It doesn't take long

George has talked flat out since we left the home, I think they get quite lonely as they all sit in their own rooms a lot.

I quickly had to get back into the habit of getting him things to eat all through the day. He quickly made a lot of mess with food all over the floor and spilling drinks. I do try to keep a mat under him. He does try to go to the toilet but is unable to clean himself properly. I go through a lot of plastic gloves and baby wipes. To help keep baby wipes from drying out put a bit of shampoo in the opening and some warm water, seal back up and then shake around to soak all the wipes. This works well. I go through a lot of these.

George was looking through some photos and was looking at a photo of Dad. He said, 'I really miss your father'. They did get on well and used to tease each other a lot. We had a lovely conversation about it, so nice.

Home again

Got Gearge from the home this morning. Something I really notice about the majority of rest homes is that the residents spend a lot of time in their own rooms on their own. I contrast this with Mum's home where they are all in the lounge and the staff are constantly interacting with them; this is something I value highly.

On getting home we have looked at some of his memory books. This is something I try to do a lot in an effort to ensure that he recognises these people even though he doesn't see or rarely sees any of them. He is now starting to ask me who some the people in the pictures are. Today he asked who one person was? I said, "who do you think it is?' He then said 'he's a bad buggar'. I asked why and he said, 'he tells bullsh....'. There was a pause and he continued, 'he tells lies.' He was very pleased with himself for remembering who it was. I must admit it was very funny and he was almost shouting it when he remembered that, very excited he was.

 It is important to keep looking at pictures of family members and friends and to talk about them as if they are no longer in the person's life they will soon be forgotten.  He does remember the friends he has made at his club which is great.

He still has a bladder infection which I need to keep an eye on.

Lesson learnt

Facebook has its uses but I am very careful about any photos or videos I put up. As you will have seen I do not put up videos or photos of George on this blog as I do not want others to ridicule him in any way. There are photos of George on there, by others, and comments about how he looks now which are certainly not complimentary and mention such things as how he has aged and was using a walking stick. I would not like George to see this. While I don't show him things like this I don't like seeing people doing this sort of thing. Facebook. I would never dream of putting personal comments about a person out there for everyone to see although so many these days think it is acceptable. Unfortunately Facebook is not secure and I am not a fan of putting many photos on and certainly not photos of others. People are welcome to put up photos of themselves.

I found a lovely old picture of George's grandmother which I scanned and emailed to family members; guess where it ended up. I won't be doing that again. Very sad as I have been making small videos with George talking about various things in his life and was going to edit and send them to the family but don't want them ending up on the web.

Papers

George (and Mum did the same) is constantly cutting up photos sticking them on top of each other, cutting bits from magazines and newspapers etc. While he is away I have been going through some of these bits of paper and throwing out ones that are of no importance or have been destroyed (by him). I found a nice photograph of his grandmother which I have scanned and sent to his family members so I hope that they enjoy that one. This way they all have a copy. Unfortunately those with Alzheimer's often destroy a lot of these things, not because they mean to but because they love them to bits.

Visiting

As a child I always worried about everyone else and especially about people being lonely and feeling on their own with no one to care for them. I find that I feel exactly the same at this age. I know that one of the people whose wife was in Mum's home, worried dreadfully that if he died first then no one would visit her. I worry about that for George as really the only person he has is me. Mum is in a similar position although people have been visiting her every day since she went in to the home. I am not sure if this would continue if I died or not. Also her other daughters have come to visit from Australia several times each year. Even though I am no longer sure how much she understands I am sure that on some level she is aware that some one of her 'very own' is there. We were very concerned that she never felt that we had dumped her there.

Today I visited George and we chatted and had a coffee. I also took a Christmas present to a friend of Mum's who also has Alzheimer's and is in a home. She never had children and her husband died many years ago. I have been feeling guilty as I haven't been to see her for a while. Another cup of coffee and a chat. I will try to see her again soon as she was so excited.

Memory

Memory is a funny thing. I am lucky that I have been blessed with a great memory and can go back to when I was a very young child. These memories are clear and factual - over the years I have checked up on these. Some of my friends from school days will often ring me to ask about an event or a person which they have no memory of but I will be able to fill them in on it. It also means that a lot of the time I know when people are not being truthful as I remember about whatever I am asking them. And of course some people have very selective memories where it is to their advantage. It actually took me a long time to realise that others don't have this ability to remember so much. I am hoping it will hold me in good stead in the future.

Something I do regret is not asking Mum and Dad more questions about their families and their lives. I often did not listen carefully either.

George had a good memory for the All Black rugby games and has retained some of this.

Something I find so sad going in to the home to see him and going into the home to the home to see Mum is how some of the residents have few or no visitors especially around Christmas time. For many it must make them feel that they have just been dumped there and that their children don't care; very sad.

Respite care

I took George in to respite care on Wednesday. The people at the home are monitoring him to see if he needs a higher level of care. We had a long discussion about his condition. They will let me know how things go.

Yesterday, Christmas Day, I went to Mum's home and then I went to George's home. He had wanted to stay in bed and they were just about to get him up and dressed for Christmas dinner. He opened his presents. I had got him a big hat box filled with memorabilities about Audrey Hepburn and a set of DVDs. I was so thrilled to find that in a shop as I had never seen anything like it before and she is one of his favourite people. We were lucky enough to meet her many years ago and I took photos of the two of them having a long chat. He got presents his son sent which included some photos which we put in his blue memory book. I left him relaxed and cheerful as the staff were taking him in to have a shower.

They are going to put on a DVD for him later.

Sleep

George needs lots of sleep. He goes to bed about 7.30 at night and I put on a movie for him. He is generally asleep before 8.30.

Something the doctor and I are wondering about is the mini strokes. Obviously George has been having these for many years which is what has caused some of the brain damage. There was never any sign of these which is usual. What is unknown is if he is still having these which is likely. I wonder if the days when the bottom lip is slack if this could be a sign. I suspect this could be so.

At the moment he is very confused and has all sorts of problems. He really has no idea of what is going on.

Doctor visit

Had to take George back to the doctor today she has given him some more medication and taken a urine sample. His blood pressure is extremely low which would explain why he is tired and lethargic but she too, is unsure whether George will improve or whether he is indeed on a rapid downward path.

A nurse came in and changed his day bag. I felt very sorry for her as George had soiled his pants and it was all over the catheter. She cleaned him up and changed him for which I was truly grateful. One less thing for me to do!

How much longer

This morning I had a lot of trouble getting George out of bed. Yesterday George used a walker frame all day. This was his own choosing and just using a walking stick did not seem to be enough. He is now using a chair which belonged to his mother to sit in as it is easier to get in and out of.

The Christmas season is always when crisis situations arise. I am so thankful he is going into respite care for a week.

Today I went in and drained the night bag and took it out and cleaned it. I then went back and it took about 15 to 20 minutes to get George sitting up. He is now in the lounge with me and has had his pill, a coffee and some fresh fruit. He has now been using the walker to go up and down the length of the lounge. He is slowly moving more easily. I will need to try to keep him moving today.

Eating

George has been struggling using a knife and fork tonight he had no idea how they worked and ate with his fingers - great mess. I will need to thin of finger foods for meals.

I also gave him an ice cream today, most of the chocolate ended up all over his clothes.

Slowly getting there

George is definitely going downhill. Today I put some sandwiches on a table beside him but he didn't know where they were. He tries to pick up things which aren't there - these are hallucinations. He also gets food and drink all over himself. He is at a stage where he really can't do much for himself, not sure if this will continue or if he will improve, fingers crossed.

Got the car cleaned out!! Getting presents wrapped. George needs constantly being given food and drink - small regular amounts throughout the day (then the clean up) as well as the catheter being emptied regularly. He has to take these antibiotics four times a day on an empty stomach - the only time that really happens is first thing in the morning but I do my best... so far so good and there has been no further blood in the urine. We see the doctor again tomorrow.

Just found that George has poured his drink over the table and put jelly beans into the glass!!!???

Now to tidying up this place - and the weather is so nice outside!!!

Struggling

I have been struggling with the bloody catheter all week. I am also struggling with everything I have to do. Tonight with a call from someone who could talk me through it I now have it sused on how to put on the night bag.

This morning George's caregiver arrived about 9.15. During his shower some workers on the road turned off the water! Just what you need. Once he was ready we went off to the memory clinic end of year coffee. Next it was to Mum's home. Stayed there for some time. Today mum was awake and then asleep in equal time frames during this time.

On the way to Brighton George was obviously in pain so I took him home, gave him more painkillers ( he had his medication while we were at the home). I emptied the bag for the third time today which shows he is getting those fluids through. I then put him on the bed and put on a DVD. I then went and did the things I needed to get done, post mail, get groceries, order meat, order flowers for Mum, get petrol for example. By the time I got home I needed to get the washing on as I was not able to get it done this morning. I then had to get on with tea.

George had a good sleep while I was out so that was good. I am now off to get him ready for bed.

I must say I am flat out but achieving very little. I rather panic when I think of all I need to do in the next few days so I try hard not to think about it. Unfortunately a lot of time is spent unproductively as I am with either Mum or George. I did have it all worked out as to what had to be done and when I would be able to fit it in but unfortunately the last two weeks have thrown everything out and with only be to do everything I doubt if I am going to achieve what I need to do.

No rest for the wicked ( I was wicked in a past life as I don't have time to be wicked).

Changing the bag

Yesterday the nurse went over what I needed to do to change George's bag for the night one. I wrote down the instructions plus I had found a video on YouTube. Last night I tried to do it! George is very sore there at the moment. I tried to pull the day bag out. Would not come out easily plus I was getting wall to wall moaning from George. In the end I gave up and drained the day bag during the night. I have Russell coming to George tomorrow morning and I know he will be the help I need, thank God for him!

I will try again tonight but I am not sure of my success.

What a day

This morning I emptied George's bag, all good! We had a community nurse coming round at 10 o'clock as George had a caregiver coming to take him for coffee at 11.30. At 10 I drained his bag and nearly took off - there was blood in the urine. I wondered if something had happened during his shower this morning but thought, great the nurse should be here in a minute. She turned up an hour late. She explained how to change the bag for the night bag - did what I was told tonight but could not get the day bag out the way it was supposed to and George was in pain so I gave up, I will drain the bag during the night. It is all very well but there must be a trick to this.

The nurse organised for me to take George back to the doctor later this afternoon.

George went out with the caregiver while I went to Mum's home for a family Xmas afternoon. I am pleased I did as she was awake and alert and I would hate her to think we didn't care. George was dropped at the home and then I took him to the doctor. He does have an infection and he has been given antibiotics.

Keep your fingers crossed!

Drinking

One of the important things to do with a person who has a catheter in place is to ensure that they have plenty to drink. Obviously I am not keen on him having wine and he is not keen on water. Today I have bought a lot of Duet for both George and Mum as they both like that.

I am also giving George Panadol for pain.

After four o' clock it is good to knock off the drinking so there is not too much urine overnight.

Nurse

Saw the nurse at the doctor's surgery yesterday. A doctor also came and checked things out for me. They are contacting Nurse Maud for me. I did explain to them that I was not a nurse, never had been and never wished to be ( I always fainted when I was visiting in a hospital). They were wonderful and spent over an hour with me which was wonderful and they did not charge me! The were not impressed with the hospital - tell me something new!

Everything was going well at this stage - so far so good. Big problem with these things is infection. Over the weekend I bought piles of Dettol products. It is something I have tried to do is make sure things are clean - get in a mess with George pulling stuff out but try to keep things clean.

A day for George

Something that is quite difficult is to keep taking the time out to continually amuse George. I do realise how important it is to do this but the carer will often be very aware of all the other things that need doing. George has not been capable of providing any sort of assistance so everything inside and out depends on me.

Today I took him down to Brighton with me to get some more cleaners. I am very aware of making sure things are clean ( although rarely tidy). I get soaps for example with sanitisers in them and I use a lot of bleach and Dettol.

When we came home I took him outside to sit in the sun for a while as I am a firm believer that we all need vitamin D. I got him a drink and some biscuits. I have found that it is best to give him one biscuit at a time as if I give him more than one he leaves bits from each biscuit. I am not sure why this is but it may be that he forgets about the one he is eating and just goes on to the next or if he thinks he should leave a bit if each one.

He seems to be a lot happier today than he has been since his turn and did tell me today that it frightened him. The catheter obviously can get uncomfortable but we are managing.

I have an occupational therapist coming round in the morning and I am taking George to the nurse at the doctor's surgery tomorrow afternoon.

Going well so far

This morning I went to the home to see Mum. It is cold here so George did not want to go, instead I got some morning tea for him and a drink and put on a favourite DVD. A neighbour also popped in a few times to check all was OK.

Everything went well and when I got home I got him some lunch. He is nodding off quite a lot at the moment but this can be nature's way of helping the body to heal. He is eating and drinking well and ( fingers crossed) today has not attempted to take the catheter out. I have explained to him several times that he does not take his pants down! So far so good.

Up and dressed

George woke up this morning and I quickly took him to the toilet and emptied the catheter. He is very confused so we went quickly to the lounge to have coffee, fresh fruit and cereal as getting some food into him often seems to help.

After breakfast I got a bucket with warm water to give him a wash and got him dressed. He now seems a bit happier. I have to go to Mum's home this morning so will talk to the caregivers and nurse there on things I need to do and things to watch for. At this time I am not sure whether to continue using a onesie at nights or whether to use pyjamas. I think the onesie as I do not want him trying to get the catheter out.

To try to help with confusion I also keep plenty of jelly beans around to keep the blood sugar level up, he is not diabetic but they do seem to help.

Proud

I am very proud of myself.

On Wednesday they put a catheter in George. They told me on Thursday that they had taken it out again, what they never bothered to tell me was that they put it back in again! I have never had anything to do with these. I had no idea what to do. As we did not get home until late this afternoon I immediately rang the doctor's surgery and am seeing the nurse on Monday but that didn't help me over the weekend.

I looked up on the internet on how to empty it. Went down to the chemist to get some alcohol wipes and spoke to the people down there, none of them knew how to do it. Got the general idea from the internet so after tea got George into the toilet and got us ready to empty this thing.

Problem: couldn't find the pocket they were talking about in the instructions. I tried to unscrew a bit I found (quite the wrong thing to do).

I then went back to the internet and found myself a video which was about a catheter and while it was not on my problem it gave me enough of a guide that I was able to then work out what I needed.

All sorted now!

The bit at the bottom pushes left to right but does not come apart like I was trying to do.

What a learning journey the last four years have been although I have to say that none of it has been anything I ever wanted to know about.

Home

Just arrived home only to find that they have reinserted the catheter after telling me yesterday they had taken it out. I do not know about looking after this! I have rung the doctor as it is late on Friday afternoon. I am seeing the nurse on Monday and have an appointment with the doctor on the following Wednesday.

Since we have been home (less than half an hour) I have found George twice with the continence pants around his knees. This is going to be a challenge!

The hospital think this episode could be caused by:

• Urinary overflow and suspected overflow incontinence
• Suspected vasovagal episode

An appointment will be arranged with a urologist.

Incontinence

Just had a ring from the hospital and the doctors have just seen George and they are discharging him today. I said if they could bring him to the front in half an hour BUT

They have to do some paperwork first which could take some time!

The nurse then said he thought I should come in and see him so he could show me how to put incontinence pads on George as he was now incontinent. I explained to him that I was way past that and that he wears full incontinence pants! As I said to him I cannot park and get George to walk to the car as there is presently nowhere close to park but you can drive to the main entrance to quickly pick them up.

Observation

At this stage George is now going to stay in hospital for another night for observation.

He is now able to stand without others holding him up which is a great improvement. They do not know what caused the turn yesterday but it looks like the symptoms have now gone. I am very aware that he has mixed dementia and part of this is vascular dementia which is is caused through mini strokes. I have never niticed him having one of these but he must have been having these for some years. They checked him out yesterday for this but saw no signs of this, fingers crossed. Those with mixed dementia often have a stroke or heart attack unlike those with solely Alzheimer's dementia.

Waiting

I am still waiting for the hospital!!

I rang early this morning and they told me he would be ready to go when the doctor had seen him and someone would ring me.

An occupational therapist rang to discuss handles etc in the flat for him to use. She also told me someone would ring later in the morning. He is able to stand on his own so that is the main thing.

It is now 1 o'clock and I have been waiting all day!!

Hospital

Yesterday George went out for a coffee with a person from Healthcare. While he was in the car on the way home he suddenly told her that he was not well and clutched on to the seat. The two of us got him out of the car and to the doorway of the flat when he just wouldn't go any further. I raced and got a chair and brought it to the doorway and we finally got him into the chair. He was white as a ghost and his skin was very clammy. I felt his pulse and it was racing. I rang an ambulance and they came out. They took him into the hospital and I followed in a car. I did not go in the ambulance as there is no one here to help me and I have to be able to get home. It is also very difficult to get a park near the hospital. I got in there and they found that George has an irregular heart beat but they were not really sure just what was going on. A nurse and I both explained to the doctor that if George took another turn during the night or tried to get out of bed then I would not be able to cope on my own as he is pretty big compared to me and I would need someone else to help me, these are certainly times when it is so hard managing on your own. George was not able to stand on his own even holding on to something, he needed people to hold him up.

It was the same the morning I found that Mum had lain on the floor to relieve the pain in her back and she couldn't get up, nor could I get her up. I got George to come and help me and the two of us were not able to manage it. Finally we got someone else to help and it took all three of us to get her up. By that time her blood pressure was through the roof. In that case we also had to ring an ambulance.

The hospital plans to release George home this morning after a doctor has checked him out.

Night time antics

I must have been very tired last night!

When I woke up this morning I went out to the lounge where I found an absolute mess. Good old George had been up in the night and brought a pile of stuff out into the lounge and piled it up all around the place. He was now back in bed sound asleep. I must admit I looked at the chaos and wondered how the hell he had done it. He had left three walking sticks under these piles. He uses a walking stick getting around and is always VERY slow. I have no idea how long it took him!

When he woke up I got him to help me put everything away. While this takes a lot longer at least it keeps him occupied for a while.

Helping to retain that memory

After our horrific start to the day (see below) I managed to get George back on track! This did take some time but worth it. I made sure that he had his breakfast and also gave him some jelly beans to help the blood/sugar levels. I then got him out the big book I had made him and we went through it. The first time he did not recognise many people and had to read to find the names even with the picture of him with Audrey Hepburn, something he loves to remember. The second time he was a bit better and the third time he really got into the swing. He would turn a page and say, I remember this and then proceed to tell me about that day when the photo was taken. It was interesting too that he certainly remembered those he had spent time with recently, for example his son and grandson who had both visited from Sydney. I think this would be because they both spent a lot of time with him while they were here. Another old friend rings him several times a month and this seems to be important to George. They talk about old times and people they both knew as well as rugby games. For family it is important for them to spend as much time as they can with a person with Alzheimer's and keep talking about the past as then they have a greater chance of having those special moments with that person as the disease progresses.

For those separated by being in different places a great way to overcome this is via Skype - just make the time.

Next step?

After a fairly confused day yesterday George is really confused today!

When he got up this morning he was nearly crying as he came down to the lounge. Yesterday I took him to get his hair cut. This morning he kept saying "I have been to them for years". He was talking about the hairdressers he went to in town. I told him not to worry as it had gone because of the earthquake. He asked me who I was. I asked him who he thought I was. He said he thought I was his wife. I told him that was right and did he know my name. He said Diane. With a lot of moaning I got him dressed and gave him some breakfast. He then started talking and asked about family. I asked if he had any children but he didn't think so and thought they had gone in the earthquake. I explained they weren't here. I said there were two in Sydney but he couldn't remember their name's. I told him that they are Mark and Scott and he said he remembered Mark, this may be because he saw him earlier this year. I then told him he had another son in Auckland called Justin. He said "he's a bad bugger". I asked why and he said that he told lots of lies! He asked if he had any daughters but I told him he didn't. I gave him his big book to look through which he found interesting although he did not recognise many of the people in the book.

It is going to be interesting to see if he remains like this or if he improves of if he stays like this. I am off to Mum this morning and was going to leave him home but don't think that is a good idea.

Rubbish

I put a huge lot of adult diapers in the rubbish each day and I must admit I often think about the environment. We often hear about the number of nappies from babies ending up in the landfills but the adult ones being used must also be huge and will be growing.

I don't know the answer to this problem and let me tell you I am not using washable ones ( if there are such a thing ).

Bottom lip day

Thank God another dry night however -

The bottom lip is slack today! Won't go into the detail that the poor caregiver had to put up with but very pleased that it wasn't me dealing with it!

I took George with me to Mum's home today as our friend is in hospital and I will be going again tomorrow. When George is like this he fits right in! Took him to the barber on the home.

On returning home George needed to go to the toilet which he did but I had to clean him up and change him. On days with the slack bottom lip he gets more and more confused.  Someone told me I would know how to deal with George's incontinence as I had had a child to deal with! Let me tell you that dealing with a child is nothing like dealing with an adult - use your own imagination on this front. Enough to say it is not pleasant. Plastic gloves and make sure you have good cleaners.

I find on days like this there is no point in trying to do much, just go with the flow and I also ensure that he has plenty to eat, jelly beans are good at getting the sugar level up which often helps.

What a strange disease

Fantastic, another dry night!

George has been pretty good for the last few days. He has known what is going on and has been following instructions! One of the caregivers commented on it yesterday. We all try to make him do things for himself, for example putting clothes on and off. We have to tell him what to do and he then tries to do it. It is so important to keep them as independent as possible.

The problem is that you never know what each new day may bring.

Food

Last night was another dry night, fingers crossed.

Something I have noticed with people with Alzheimer's is that they all like a lot of food (preferably sweet) at regular intervals throughout the day. - breakfast, morning tea, lunch, afternoon tea and dinner.

If I am working at the bench George will go to the table and wait patiently for his lunch/dinner even though he might have just had a meal....

I then have to explain it is not tea/lunch time for a 'long time'.

Night time

Talked to some of the caregivers at Mum's home about keeping the bed dry at night (it is not every night) and they suggested putting Y front undies over the top of the pull-ups to keep them in place. This is to keep the pull-ups on as they do tend to drop down a bit. 

Dry bed this morning!!

Continence problems

This week George has constantly been soiling himself and I have had to constantly change him. I am not sure if he has a tummy bug but have been feeding him things like cheese, hard boiled eggs for example and I always keep him off such things as kiwi fruit. I have to be very honest but this means I have a lot of washing to do.

 In addition I have had to completely change the bed three times this week -  the pull-ups are not good enough. This is something I also found with Mum. Tonight I am going to start putting two pull-ups on him. Hopefully that will help.

Long morning

George of tens wakes up - and gets up - early in the morning, for example at 4.30. Sometimes I am able to get him back to bed but not always. As his carers do not arrive until several hours later this can be a time of restlessness. I have found that the best way to deal with this to get his breakfast a bit at a time and spread it out as long as I can. First he has his coffee and his pill. Next comes fresh fruit. Then I get him cereal. Last, but not least, I get toast or muffins.  This takes some time but often there are two plus hours to wait. Talking about things that are going on, personal things such as what is happening that day generally works but it does mean that you are doing things you may want to.

There is little point however in doing the washing before the caregiver has come so that is the first thing I do as soon as the caregiver goes. If we then need to get out straight away then getting that washing out is the first thing I do as soon as I get home.

Three times lucky

One of those days!

This morning the caregiver found George could not follow instructions as he does not always know what you are talking about, for example if he is told to wash his arm he may try to wash his feet or something similar.

Whenever he goes to the toilet I need to go and check on him. He will leave his pull-ups any old where! Sometimes I have had to search to find them. This happens when he wets them. He also wets his pants and takes them off too. He will then get clean ones out and put those on without pull-ups so I quickly have to get his pants off and pull-ups on first. If it is near tea time I put on old pyjama pants to save one pair of long pants. The amount of washing that gets done is unreal!

Today I changed him three times after the caregiver finished at 10 this morning.

Bewildered

I took George to the funeral yesterday which was held in town at the cardboard cathedral. I left home quite early as I was not too sure of the road closures and I also wanted to park as close to the cathedral as I could. We parked behind the cathedral in some bare land which is where people park when going there. Unfortunately this is very uneven ground although I was able to park reasonably near the the footpath. George moaned a lot getting to the footpath. There was also a strong wind and George moaned all the way into the cathedral. We sat near the back in case I needed to get him out of there which luckily I didn't. We had just sat down when an old colleague of George's came in with his wife and sat with us. That was great and George knew who he was so sat next to him looking like a wise old owl who knew exactly what was going on which was certainly not the case. He said to me later that someone had told him that he had been mentioned in the service and I told him who had mentioned him and about their 'old farts' group. He thought that was wonderful. Many people wanted to see and speak to him but many he had no idea of who they were however some he did know. Straight after the service someone  came and thanked me for bringing him and said she hoped we were staying for a while as many would want to speak to him which I had thought would be the case however it soon became apparent that with all the people and all the noise it was too much for George so we had to leave. Several people told me that it was so sad to see him like this as they remembered George for his story telling and wonderful sense of humour both of these are now only seen rarely.

Memory is so random

On Monday I took George to the bank. He loves going there and having a chat to the tellers. On Monday the teller told George that the old editor at the Press had died. George talked about it all day and I bought the paper so he could cut out the bit about Binnie. After George retired he used to go for lunch every Friday with Binnie and some others from the Press. I called them the Old Farts club.

At tea time on Monday George came out with his jacket on ready to go to the funeral! I explained it was not for a few days. Tuesday he got ready for the funeral and said about Binnie's funeral several times. I kept telling him that it was 'tomorrow'. This morning (Wednesday) I told him that we are going to Binnie's funeral today. He has no idea what I am talking about. I told him that Binnie had died. I reminded him that the teller at the bank had told him then. He remembered that and I said 'well today is his funeral'. George then wanted to know what he had been doing since he died! I tried to explain all these questions very simply. He said he was very confused - understatement of the year.


You just have to go along with it all. It is very strange how they can be pretty with it and then suddenly way off the beam. This is one of the reasons why it is hard for people to try to 'have them on' as they are just unable to process it.

Death

From The Press 17 November 2014



Took George to the bank this morning (he loves to go and chat to the ladies there) where he gets out money for his wine. One of the tellers told him Binnie had died. This person was his old editor on the Press. He came out to the car and told me the editor of the Press had retired so he got some right. He wants to go to the funeral which is on Wednesday at the cardboard cathedral.

George has been quite confused today. When he was going down the hall to the bedroom he looked in each door to see if it was the right one!

The constant mess

Dear George has a habit of pulling everything out of the wardrobes and drawers which is why I try to hide as much as possible to try to keep the resulting mess to a minimum. Unfortunately there has to be stuff that is stored in drawers and wardrobes (it can be any cupboards) and then we just put it away - all takes time but at least it is not destructive.

This is known as rummaging.

 

 

Interesting times

As I have said before when George's bottom lip is slack he is going to have a confused day. This morning the caregiver found that he wasn't too sure about simple instructions, foe example to wash his hands.

It was one of the days I visit my mother so I took him with me as it is a holiday here today and the person he usually goes to have morning tea with and to have a chat would have lots of people there.

I got both him and Mum a milkshake each which they both love. Usually I grab a coffee, which is free for an old person like me, but today the coffee machine was broken so they told me that they would have two for me next time! They know me very well there. One day and new person was serving. I heard one of the others saying something which I didn't quite catch. She told that the others had told her to watch out for me and how regular I was! I suggested that maybe they were being rude about me but she assured me that they weren't. We always have a bit of a chat and I get on pretty well with them. At the home they also gave George some sandwiches for lunch which he enjoyed.

Tomorrow is also a day I go to Mum so hopefully he can have a Mr Gormsby day while I am away.

Unfortunately, despite having his pull-ups on, the bed, including the mattress were soaking. I also have more plastic over the protector and then an old towel before the sheet. George must have been twisting and turning as the towel was soaked as was the mattress protector but that had done its job. Two loads of washing. Luckily I got the first lot done and out before we left.

The strange thing is that other days he can be really on the ball and knows a lot of what is going on. He certainly still recognises everyone.

Yesterday I went and read Roald Dahl poetry to the people at the club George goes to. Most of them loved them and were cracking up. I read for an hour and many of them would have liked me to continue with some more. I used all the voices the kids used to love.

Sundowning

This is something I never experienced with Mum but I do with George. He keeps wandering around and although he seems to know what he is doing it is rather random.

George expects to eat all day with meals and snacks. However when he is in this sun downing mode he will cut his meal, play with it but not eat a lot. This can be quite a difficult time to deal with. I put his onesie on and put him to bed with a favourite movie.

Where is ...?

The toilet issues are definitely worse for men than women as they tend to piddle everywhere whereas that is not possible for women.  I look at all the adult diapers that I put in the rubbish each week and I think of the environment but I refuse to use cloth ones!

George tends to bring so much out to the lounge - I put away five shirts just before! If I want to keep something so I can find it I need to hide it which is easier said than done. When I put the clothes together ready for the caregiver in the morning I cannot guarantee that they will still be there in the morning, he may also get up and put more clothes on during the night. I do a lot of washing!

Reliability

Caregivers may find, as I do, that you need to be extremely adaptable. George has someone who is supposed to take him out each week to go for a wee walk, go to the library or go for coffee. If she is unable to come I am often not told until an hour or two after she was due to be here. I have learnt to be grateful for whatever happens however it means that you cannot make plans for this time until it happens as you don't know what will happen. Other times you may find yourself waiting for someone - this is when I find the iPad good to keep ME occupied! You also need to be available at all times in cases you are needed whenever the person is not with you or if they are in a home. I find there are many times I don't know what I am doing from one minute to the next.

George now uses pull-ups for his continence issues. These are great but again they are not something you can also rely on. Most mornings the bed is dry but this is not always so.  On the bed I have a waterproof mattress protector, the I have a large sheet of plastic followed by an old towel and finally the sheet. Believe it or not many times the bed is wet right through to the mattress protector. I have two pairs of arctic sheets which dry incredibly quickly. The mattress protectors take a lot longer to dry so I have bought three of these to ensure that there is always one dry and clean.

Strange behaviours

You will often find that people with Alzheimer's have some very strange behaviours - they know exactly what they are doing even if you don't and unlike children it can be almost impossible to stop them.

Last night in the middle of tea George got up and took his plate into the kitchen. He then started cutting it up and putting small pieces on a whole lot of plates. When I asked what he was doing he told me it was for everyone.

I explained it was all for him and got him back to the table however he kept repeating this behaviour several times until I figured he had had enough and just told him I would look after it.

You often have this sort of thing and just need to go with the flow and let them do so much before stepping in so that they feel they  have accomplished what they wanted to.

Messages for caregivers

1. Take care of yourself: Providing care for a family member at the expense of your own health or relationships with family does not benefit anyone including the person needing the care.
2. Maintain contact with friends and involvement in outside activities: This is critical for your well-being. Studies show that sacrificing oneself in the care of another and/or removing pleasurable events from one's life can lead to emotional exhaustion, depression and physical illness for you. Don't get to the stage where you have been so wrapped up in caregiving that you become 'all used up' and without a life separate from caregiving
3. Caregiving to adults is more stressful than childrearing: with an infant a person can look forward to the child's independence. With elder caregiving the prognosis is for decline and increasing dependence not recovery. It is also difficult to predict how long the caregiving will be needed.
4. It is OK not to love (or like) the person who needs care: not all older family members are likeable or loveable as they move into some diseases
5. Asking for help is not a sign of weakness, inadequacy or failure: knowing your personal limits and reaching out for assistance is characteristic of a strong individual and family unit. This also helps to ensure quality care for the relative.
6. You have a right to set limits and say 'no': trying to do it all or to do it alone makes you physically and emotionally exhausted
7. Begin taking regular breaks early in caregiving - it is not selfish: Breaks from the demands of caregiving are a must. Respite breaks helps both parties as you are likely to be more loving and less exhausted after a break
8. Make decisions based on both your needs and the family members needs: decisions need to be based on the needs of both not on the basis of the needs and desires of the older person
9. Moving a family member to a care facility can be a loving step to take: moving to a home does not end the caring relationship. When you are no longer devoting your time to meeting physical and safety needs you will be better able to meet their emotional and social needs. Meeting these needs adds immensely to a person's quality of life
10. Focus on what you have done well - and forgive yourself: Too often you may only focus on what you have not done. Remind yourself of the many things you are doing well. Not everything will be as you want it to be and there will be times when you wish you had done things differently. Learn from mistakes and move on.

Adapted from : Schmall and Stiehl (1987)

I try to remember these messages but it is not always possible. Main thing is just to do the best you can for yourself and others under your care.

Advice

When George started having continence problems his morning caregiver told me to get him into a continence clinic which is done via a doctor. They are then able to get you pads etc to help - this is a big help as these are VERY expensive. He told me to get as many as I could and any extra to store in the garage and that I would need these later.

Later has come.

George now has pull-ups. the allowance is 4 per day (and night). I have been changing George up to 5 times a day!! This is not every day but...

I have talked to the carers at my mother's home and they have similar problems with several male residents there. There is not a lot you can do about it as these people think that they are doing the right thing but they take their pants down and then piddle over everything (some in the toilet, some on the floor and some on their clothes and pull-up.

I am just thankful I have plenty of pull-ups not to worry about it.

Good days and bad days

I often think good days and bad days are like 'the good, the bad and the ugly' when dealing with those with Alzheimer's especially when they are incontinent.

Yesterday I had to change George 5 times! I have just changed him for the first time today. Also I need to wipe his bottom as he is now unable to do this properly (baby wipes and rubber gloves). I often find myself putting on several loads of washing each day.

I was discussing this with the caregivers in Mum's home and they have several men in there who are the same. Someone told me I would know what to do as I had had a child! This is not true. It is the same with all sorts of things about dealing with Alzheimer's. A lot of people think that with Alzheimer's they go back into their childhood. It is different with each person but I have never seen anyone doing that. With the people they need to be treated with dignity and respect. People think you can divert them - this is often easier said than done and they are often bigger and stronger than you are. When George has made his mind up to do something well that is the end of that there is little I can do or say to stop him.

Family visit

Last weekend was a long weekend here. George's son lives in Auckland. He came down for the weekend to see George. He came over on the Sunday afternoon and took him out for a couple of hours. George was thrilled and has been telling people all about it ever since. It meant a lot to him. The contact with family is really important for these people with Alzheimer's. At present George is still able to carry on quite a conversation (admittedly there are good days and bad days) but how long he will be able to is anybody's guess. It is important for the families too that they make the most of the time they have with the person.

I remember at George's mother's funeral someone there was in tears. George spoke to him for a long time about his problem. It was about this man's relationship with his father and how he had not bothered to be there for celebrations (e.g. special birthdays or Christmas) even though he knew his father desperately wished for him to be there. It is so sad if people are left with a feeling that they could have/should have done more. I remember that not long before my father died my son spend many days sitting watching cricket and talking to his grandfather. I know that this time meant a lot to both of them.

Live every day as it comes and make that time to show your parents that you care. Surprise them with a visit at Christmas time or a special birthday. Spend time with them.

Hide and seek

As I have mentioned before something Mum did and George does is hide stuff.

George brings shoes into the lounge - always single ones, never a pair. Many times I can find plenty of single shoes but not a pair when we go to get him dressed. He goes for a walk once a week. He had a pair of shoes especially for this but unfortunately one of the shoes has been missing for ages now. I got some new ones which I keep hidden so he can't find them and just bring them out when he is going for a walk. This is the only way I can keep track of things but unfortunately I can't hide everything!! Shirts are rarely left hanging in the wardrobe - they end up all over the house and often he is wearing two or three.

There is not a lot you can do about this just go with the flow.

What a morning

As I have mentioned with George, at the present he has retained a lot of memory. Last night a builder was in to see about the place where we live in relation to the repairs that have to be done. He was asking if I would get an accommodation allowance but we won't get that and also he asked about a container for the contents which I will also have to pay for. Poor George obviously understood some of what was being discussed and afterwards asked me if it would help if he went and lived in our munted house!! I felt dreadful, he does try so hard to help and although it is not an easy situation to be in 'thems the breaks'.

I told him not to worry about it as nothing will be happening for ages however it must have been on his mind as he did not sleep well.

this morning he looked awful when he got up and was really 'out of it'. I gave him breakfast in 3 stages (as I usually do) fresh fruit, rice bubbles followed by toast. He was still restless and not really knowing what was going on. The caregiver found the same. For example while he was shaving he took his new razor to pieces, took me ages to get it back together again!!

Then we had Harakeke and I had to visit mum - got the washing on before we left and got it out the minute I got home. He was fine when he got to Harakeke and sat with some other old men and chatted away. He really loves socially mixing with the others.

Really you can't worry about other things I have found, just concentrate on each day as it comes.

Just what you need

Tonight I am putting on tea while George watches the early news (I thought!).

Off he goes to the bedroom and puts on two more shirts, takes off his pants and continence pants. He then wees all the way down the hall to the toilet and then does a poo which he gets all over his clothes. I then have to make him get all his clothes off - a singlet, a rugby top and two more shirts! As they all have poo on.

Tea has to wait until I have finished.

I keep a bucket with white vinegar and water with a scrubbing brush at the ready to deal to the floors. I also keep plenty of baby wipes at the ready!!

On their own

When left on their own those with Alzheimer's often wander off and get lost. I am extremely lucky as though I have always been aware of this neither Mum nor George has ever shown a tendency to go out alone.

What I do is put on a favourite DVD and leave a plate of biscuits and a drink on the kitchen bench. This seems to work quite well. I do this every Saturday when I go to Mum.

You do have to be prepared to clean up the mess when you return. In addition to bringing stuff out all over the place this morning a found his continence pants on the the floor and just put a pair of long pants on. Change and clean was then the order of the day..

What a mess

Today we had to get George to memory clinic.

As soon as he had George finished we had to leave so I put the washing on and off we went. After memory clinic we went to see the man with the bad back.

Got home and got the washing out. Went to go to the toilet....

• Wee all over the floor
• Poo all over the toilet seat

Guess what I did before going to the toilet (and I was busting!!!)

Routines

When you are caring for a person with Alzheimer's the career will find that their life needs to work to a routine. My life with George certainly is. I find that I am dashing around all the time taking him to and picking him up from various activities. Some of these I am expected to stay while others this means that I may have an hour or two to myself which unfortunately is not enough time to go home but is time to have a coffee or something.

I often have to leave the washing going when I leave in the morning. The first thing I need to do when I get home is get that washing out.

I find it best to organise George's clothes ready for the next day before I go to bed. I do this after I have got him into bed.

Something I do find difficult at the moment is that I have broken a tooth and am trying to dash in and out to get this seen to. I have been asked if I want a sedative and of course have had to say I can't as I can't risk it and have no one to help me if I need it. These are issues for all caregivers.

Eerie

In my mother's home was a woman named Christne. Her husband visited regularly a couple of times each week (he regarded staff there as his family) and both he and I would be at the home during Christmas dinner. He then went to family for the afternoon and then tea. He had a heart complaint and had been in hospital several times (staff would go and visit him there) and had been hoping for some time that she would predecess him as he was worried that she would not have regular visitors. We have ensured that someone sees our mother every day and she has a massage once a week. While I do pay people to go to see Mum it is worth it as having visitors provides a quality of life.

He died on Friday. Christine had been very ill for over a week and her son had been in to the home regularly during this time. The day after he died another of their sons had just flown in from his home and went in to see Christine and he told her that her husband had died and that she could now go to meet him. She appeared to understand and he had seen recognition in her eyes. 5 minutes later she died.

There is so much we don't understand.

Hat

George wears a hat all the time. He puts a hat on to move around the house, he puts a hat on to go out, he puts a hat on to go outside. Now he puts a hat on (and sleeps with it on) to go to bed!!

Those with Alzheimer's often have behaviours which they repeat over and over for no apparent reason.

Something both Mum and George have in common: Mum went through many packets of tissues, twisting them around in her hands, George brings large pieces of toilet paper which he twists and discards - I find it everywhere. Mum no longer does this but it does seem to relieve anxiety in these people.

I find it best to just let them do these things and go round behind and pick it up. This saves arguments or frustration.

Depression for Caregivers

It is well known that those caring for a family member suffering from Alzheimer's often experience depression. Some research points to this being true whether the person is at home or in a home. I guess a part of this is that when someone goes into a home the career suffers an incredible amount of guilt as they "weren't able to cope better'. While this may not be true when someone is in the throes of depression they probably will not see it as such. Bergman-Evans says that every day holds unexpected challenges and loss of personal control and that both emotional and physical health are at risk.

Other people don't want to know about this, I guess that is to be expected as they want to live their own lives.

Here many people are also suffering depression due to the earthquakes we have had. This has caused major loss for many people here and counsellors are still working very hard helping these people which is still being discussed in the community. We also have many ads on TV urging those suffering from depression to tell others, friends and family, about it.

I know that for at least the first two years after the earthquakes I was certainly suffering depression caused by many things happening in my life (many of these things resulting in losses). I definitely found that my health suffered both emotionally and physically. This was the first time I had ever suffered from asthma. I have frequently felt completely overwhelmed by everything. I found it hard to talk to anyone especially as someone actually told me that they didn't like talking to me as I sounded as though I was sorry for myself. Most people here were in similar situations and many had been traumatised during one of the earthquakes.  I also found it very difficult as the only family members here were ones with Alzheimer's so that wasn't much help to me. Although in reality I knew that a lot of things would eventually work out it is hard to keep that in mind. It took me a long time to work through it all pretty much on my own.



I knew I had to keep going for Mum and George so that made me get out of bed in the mornings. I took any contract work that was offered which gave me a sense of 'normality'. I have done voluntary work in the community right through, this gives you a sense that you have something that is valued by others. I try to meet a friend for coffee once a week and just chat about any old thing, not important things just light-hearted. I got myself a new cat; so I could love it and she could love me.

Some people we also know, through my sister, are a couple. The wife works and also is one of the visitors for my mother. The husband has had a very bad back requiring two major surgeries which has meant that he has been house bound for over two years. He has been in pain and bored being on his own so much so we try to visit him weekly and always take cream cakes or sponges for a treat for him and George (I always take enough for the others in the house to have that night) which of course costs me quite a bit. He and George enjoy talking together. Before this he was a caregiver. I sometimes leave them while I get a bit of shopping done. This takes his mind off his own situation, gives him someone to talk to and also we are claiming for him looking after George so that he gets a small allowance. This then helps his self esteem. Of course this makes me feel that I am helping someone else.

I guess what I am saying here is that for the caregiver you are often 'on your own' so you have to create the opportunities for yourself.

Hide and seek

Something I find really difficult with George's incontinence is that he does still use the toilet during the day. This of course is when he often gets it all over the floor or he will come back out with his pull ups and long pants in one hand. He rarely flushes the toilet so I do go in regularly to flush the toilet and wash the floor which isn't too bad I guess however;

Hide and seek: something George also does is come out with only his long pants as he has hidden the continence pull ups. You may think it should be easy to find them but that is not nessessarily so. I can spend a lot of time finding them and of course there is another load of washing.

Baby wipes are also needed constantly.

Weekend

I was able to have time with my grandsons this weekend while they were down from Auckland. I have to organise everything for George while I am out and also realise that when I get home there will be a mess for me to try to sort out as well as spend time with George.

I am very aware that I cannot get sick! I still need to be on deck to get the basics done such as meals, washing, floors and taking George to all the places he needs to go.

I am also aware that it is becoming more difficult for others to stay here as it can be rather confronting. I am aware that it has been this way for some people for some time although for others they are pretty understanding. I have promised my grandchildren that if they let me know in plenty of time I will put George into respite care so they can stay.

Unbelievable

I picked George up last Sunday...

Since then he has managed to put toilet paper all over the place. He pulls stuff out of his wardrobe and drawers. He never puts anything back and it is often difficult to find things. It is amazing how much of a mess he is able to make. He does not mean to and he tries so hard. He often just wanders around taking stuff - everything is 'his'. I find stuff in the strangest places.

Toilet floor - back to constant cleaning in the toilet.
Washing - back to washing every day, sometimes more than once

We also have a new person on Wednesday and Thursday morning and it is going to take me some time to get him organised. At the moment he calls to me every 2 seconds to help him with something although I have all the clothes and everything ready. We will get there.

It was nice to be on my own for a while.

Home again

George came home yesterday. The washing is already underway. The toilet paper is now coming quickly off the roll and is found in strange places. I have his seat well set up so that, hopefully, it will remain protected. He is still regarded as rest home level and not yet what they call D3 which is the level where they go into a dementia unit.

I use this home as it is one of the few that will take bookings. I have developed a good relationship with the admin staff and they always fit him in, sometimes in a very plush apartment. This home has largely been rebuilt due to the earthquakes. The rooms are lovely and the staff very nice. There are activities for the residents but very little interaction between staff and residents. I spoke to a nurse about this yesterday and she that actually there is not the interaction as they don't have time. The dementia unit is on the 3rd floor. This is something I would not be happy about, it is so nice for people to be able to go outside,everyone loves to smell the flowers. There is a lot of research to support this view about those with dementia and gardens. When the new gardens are completed at Mum's home I am planning to wheel her out into the gardens and sit in the sunshine, a thing I always appreciate.

Little things

It is the little things that count. This morning I left home to go and do some shopping at 8.30 a.m. As I got near the shop I thought, 'this is something I used to do but no longer can', the freedom made me feel great. Got a park right outside and was in the shop and back home in under an hour!! Wow, so great.

Last night I got a call from the home where George is and they said that they needed more clothes. This puzzled me and I asked what sort. They said he had nothing to wear to bed last night. I said that he wore onesies and that I had packed 2. They said that they were in the wash. I took more over. Guess what?? The other ones were in his drawer!!! I wasn't a happy camper.

This is something you need to be aware of: if anything goes wrong in a home where your loved one is if anything happens that they ring you straight away which you would expect but also be aware that while many times it is just to let you know about something other times you have to go to the home straight away. When you are the only family member around this means it is you.

Time slip sliding away

I spent nearly four hours today getting the measurements to the place to get a quote for curtains and carpets. It was on the other side of town and then I had to go through each measurement with them. Very time consuming. On top of that they charge $75 for the curtain quote and $75 for the carpet quote. One more thing done however.

Getting there

One foot in front of the other is good travelling so they say. Got some windows cleaned and also have been stripping and airing the beds and bedrooms as usually I change the beds but it is good to give everything a good airing which I am doing while I have the time. I know that it all probably doesn't seem a lot but it makes me feel better and therefore I feel better about things which is the main objective. I have had to learn to ignore what others think and concentrate on what I can achieve.

Airing and steam cleaning

I am stripping beds and airing them thoroughly before remaking. I am also steam cleaning all the furniture. Although it probably doesn't show to the naked eye I know how much cleaner they are.

George can no longer cope with trousers and a belt so I am taking those out of his wardrobe and I will get rid of them (keep a couple of pairs in case we need them and will keep the belts for him).

Lovely day so have done some washing and now will tackle lawns and gardens.

Haven't heard from the home so they must be coping.

Making the most of the time....

Nice

Got quite a bit done yesterday. Weather was foul - cold with rain and hail so it was a good day to do some spring cleaning. I still have plenty more to do but feel very happy with what I have achieved so far. Something I certainly notice with George is that he is like a little magpie and secrets all sorts of things. I have found some important papers that were needed for our last year's tax return. As the rest of the stuff is with the accountant I need to scan and send these to him, just as well I have found these  and hope that I don't find too many more!

How nice to rush to the toilet and not have to check that it is clean first!

How nice to wake up and find that the cleaning up I did yesterday is still tidy!

So little time

Getting into some cleaning today. Although I clean the toilet and bathroom floors constantly today I have been scrubbing! The weather is revolting with hail and high wind.

Tomorrow I have to go to Nurse Maud for George and also visit Mum as well as taking a little boy to improve his reading. Another day I need to go over to the other side of town to try to get a quote for our carpets and curtains. Measuring up for this is very time consuming. I realise that the time George is away will go very quickly and I will not get everything done but every little helps.

George liked the new building at the rest home so I hope he enjoys his time there.

Respite care 2

Getting George to respite care today which I am really looking forward to. I mentioned about washing - on the second load this morning and will have another one after I have taken him in. Unfortunately he has taken stuff I had packed out but luckily I found it or things would have been difficult as he would not have had the clothes he needed but I am just doing all that again!! Been a difficult morning as George woke up in a real mess and straight into the shower which took some time to get hot enough and it was difficult to keep him in one place while we were waiting.

On with getting ready....

Respite care

When someone goes into a home for respite care all their belongings have to be labelled. Very happy as I have found a place where they do iron on ones which are so easy. With Mum's stuff I had to sew each one on. Remember this is every sock, pair of undies etc - very time consuming.

I have George going in to respite care this weekend. I am so looking forward to:

• Not having to do constant washing
• Not having to amuse someone else
• Not having to take someone else here there and everywhere
• Not having to clean the toilet 2 or 3 times a day
• Having a good night's sleep
• Having a read
• Having a lie in bed
• Doing what I want, when I want

It actually takes ages to get someone ready for respite care and I have decided to have a case ready so I can just add his personal things quickly if I need to put him into respite care quickly; for example an emergency.

Doctor calling

After getting George dressed this morning I then found him with a jersey. He had put it on: one leg through the neck opening and another leg down a sleeve.

Then I was getting ready to visit Mum. I saw George going towards the window and asked him where he was going. He was adamant that the doctor was calling to him!!

At the home I was talking to someone else and telling him how I nearly lost the TV. He told me that his wife had continually gone on 'why is that bitch watching us?' and things like that until a point where he never turned the TV on.

Going, going, not quite gone

Nearly lost the TV last night.

I was in the kitchen area getting tea when I saw George approaching the TV with his hand outstretched ready to pull the TV over!!!

I shouted out and luckily he stopped midway. I asked what he was doing and he said he was answering the door! He thought that the person on the TV was someone coming to call.

The caregiver often needs to keep one eye on the person to avoid some of these things happening. Obviously you can't watch all the time, that is the tricky part if you are the only one as you can not be everywhere at once.

Continuing up and down

George continues to be up and down so I find that I have to go with the floe. Caregivers will find that basically their needs and wants have to fit around those of person they are caring for.

Today I was my usual lazy self. I spent all morning taking him to the doctor and then getting things for him and found that the whorl morning had gone and I had achieved nothing!

While we were with the doctor she and I also discussed George's progress. She is great as she similar ideas to my own about medication and quality of life for old age people. She also has a bedridden mother who is in her 90's so has a realistic understanding. She is also in my age group. I think it is very useful to have a doctor like this who you can trust and who have an understanding of the situation.

Progression issues

George has been very confused this week which has been very trying and quite difficult for me. I have not been sure how much of this has been due to the disease progressing or something else.

Usually I try to keep things to a simple routine but various things have changed our routines this week which may have contributed to George's confusion. He finds it hard to do things quickly or if things are different.

On Friday George's caregiver was our experienced one and he also noticed how confused George was. He suggested fish oil tablets and a teaspoon of lecithin. We went out for coffee. George loves doing this. Afterwards I was going to go shopping but changed my mind as George seemed a bit strange. On the way home we got the fish oil tablets and some lecithin which I gave him. He had a big sleep during the afternoon and an early night.

We are seeing the doctor on Monday as he also has fluid retention in his left leg but to be honest I was thinking he may have to go into a home sooner rather than later.

This morning what a change! Chatting away flat out and back to normal - as much as possible. I will be keeping up with these supplements.

Toilet issues

As George has become more incontinent some of the issues I face are:

• He now wears continence pull ups which work great while they are on - the trick is keeping them on
• He will go to the toilet (and get urine all over the floor) and then come out to the lounge with he pants and pull ups in his hand - luckily this has not happened when we have had visitors
• He will bring toilet paper out of the toilet (I do not keep spare rolls in the toilet any more)
• At night he would get up and take his pants off and then wee all the way down the hall to the toilet - I have found a onesie on at night ensures that he can't get it off
• I find I need to clean the toilet floor a couple of times a day (as well as the toilet)

I know people wonder why we haven't gone away for a trip - this is why.

Night time antics

George woke up late this morning. I had slept through his prowling. He had been in the spare bedroom and been through the wardrobe, including the top cupboards. He had also been out to the garage.

When he got up he had on, over the top of the onesie, a pair of suit pants, a pair of pyjama pants, a shirt and a jersey. This something he will do for no particular reason. It does create a lot of washing.

Respite care

It is a long time since George has been in a Home to give me some respite care. I have booked him in for a week later this month. It is often difficult to find a Home which provides respite care. What will I do? Initially I thought I would go away but on looking at the price of airfares and accommodation I decided not to.

What is the purpose of this time for me? To give me a rest which is what I really need. I can do that just as well at home as anywhere else so that is what I have decided to. I will read books, have spas and hopefully get some sun!

Alive inside

A new movie, recently released and being shown in film festivals, is Alive Inside.it focuses on the power of music for those with Alzheimer's and the remarkable results the use of a headphones playing music that means something to that person. I have bought MP4 players and headphones and have been downloading free songs from the web to load up to the player. I am also doing a 'how to' page sheet for the home so the careers can put the headphones on and play the music for Mum. It will be interesting to see how it goes with each of them. In the movie a man who had not spoken for years started to talk again!

Best thing I have done since finding myself being here with Mum and George is to get the spa. I really look forward to having one each day, luxury.

What a mess

Today I got George two bowls of soup with toast for lunch. The next thing I found him at the table and he had obviously thought he needed more to eat. He had got himself a hunk of cheese, some marg, a spoon, a knife and was buttering a piece of paper to put the cheese on! I got him some cracker biscuits and then prepared them for him and cleaned up the mess. He thought he was being so good doing something on his own and retaining some independence.

Something George does is go to the toilet and come out holding his trousers and continence pants. Sometimes both are wet but not always. I just fix him up. Luckily no one has been here when this happens but the day may come...

Toilets

Something I think that is quite necessary to deal with an Alzheimer's person at home is two toilets. I am constantly cleaning our toilet but frankly George's needs come before my own and so many times I would like a toilet he did not use. I go in to use it and find I need to clean it first, not good if you are in a hurry!!

Down right embarrassing if a visitor wishes to use the toilet!!!

Television

I have never really seen why they do not have television on at my mother's home. I do now.

Last weekend we went out for breakfast at a lovely winery. Afterwards I asked George if he enjoyed it. He told me there was good and bad. I was slightly taken aback as it was a lovely meal in a lovely setting. I asked what was bad and he told me, in a forlorn voice, that he hadn't seen the horses. At first  I could not work out why he was saying that. Finally I worked out that we had watched a programme the night before about a herd of horses  being culled in the North Island. I explained to him that there were no horses and we had seen it on TV. That made little difference as he told someone else, the next day, the same thing.

George got up and was walking around and I asked him where he was going. He replied "to Townsville". I told him that was fine so he sat down again. There had been an ad on TV about Townsville. Another time, while watching the News, he got up to see the Prime Minister!

While none of these things were too significant I can now see how those with Alzheimer's find it difficult to distinguish between reality and fantasy.

Confusion

George has been very confused lately. I will see him heading outside and ask him where he is going. "To the toilet"

I then have to point out which door to go through. I remember mum being like this at times. I will also say, "come to the table for tea" and he will ask where the table is.

Today he went down to get the mail. He then took his pants off and peed all over them! Somehow he blamed everything being wet on the mail box. After I cleaned him up,put the next load of washing out I then made him a fresh ham sandwich. He then told me he couldn't eat it because it was wet. I explained that it wasn't but he just kept on bringing it to me saying it was wet. I said that it wasn't but he was sure it was because it came out of the box. I couldn't work out what box we were talking about for some time but finally worked out he was talking about the mailbox which,according to him,was where he got wet. Finally,in frustration, I got him over to the kitchen so he could watch me make another sandwich which he then ate.

My advice: don't try to work out what is going on in their minds and don't try to explain it to them, just do it in front of them and say what you are doing at the same time. I don't know if they understand any of it but it seems to work.

Up and down

Saturday was fine - I went to see Mum while George watched a DVD and I left out plenty of food. Sunday was really bad and I was left wondering how long he would be able to remain in the home situation however he is fine again today.

This morning, after the caregiver left, he described what he thought that the caregiver had done wrong - over and over!!! The best way to deal with this is ignore!! If I try to move away he just follows me so that one doesn't work.

We then went to the bank and shops so that diverted him and he has been fine. Got his nails cut again today. I must admit that while it is easy enough to cut my own I do not find it so easy to cut someone else's nails - the people who do this as a job do it well.

Eating

George eats normally with utensils for the most part but there are some things I have found:

1. Mandarins -  I peel them and segment them, he puts a segment in his mouth and chews and then spits out what is left (there are no pips in these ones) which leaves a big mess
2. Lamingtons - I gave him some creamed lamingtons (in halves) for dessert last night, he got himself a knife and fork to eat them - which indeed is what he did
3. Apples - I cored and cut into segments and he will just eat a bit out of each piece so I also need to peel them
4. Banana - I peel but he doesn't eat if there is any colour on them - cut that off then he is not aware

I do find food scraps in some very funny places and also his continence pants so these are things I need to keep an eye on.

Best laid plans

The best laid plans of mice and men

You will have heard the phrase and ...

On Wednesday was the first prison visit and I was to meet a co-ordinator at 9.30 at the prison gate and the first session was for 10. In order to get there by 9.30 I needed to leave home at 8.30.

George's caregiver is due that morning at 8.

Just before 8 I went to the toilet to find a lake in there!! Clean up time straight away.

Next problem - caregiver late and arrived at 8.25!! Got him organised and left.

Next problem - got to a round about which a lot of vehicles have to use with people travelling to work and/or school. A flat decked truck (rather beaten up) was carrying a load of scrap metal going round the round about. As it circled round the metal went all over the road. The truck stopped in the round about and two men alighted and picked up the metal while cars banked up on all four roads leading to the round about. After 10 minutes we were able to go.

Got to the prison just on 9.30 and went to the gate house to meet the co-ordinator. 9.45 he still had not shown up. I went to the counter and asked for them to ring him and find out where he was. He came over - he had the wrong time down.

Got the area where I was to do the literacy work and had just sat down when a phone call came through; the prisoner refused to come!!

Back we went to the co-ordinator's office to find out what was happening. Finally it was arranged that I take it at 11 that day rather than 10 so everything worked out in the end but talk about one stress after another.

While I am away someone takes George out for a walk and then they get a coffee and something to eat. We then get home about the same time.

Although it was a stressful day due to unforeseen circumstances it gives me a chance to do something for someone else which will hopefully be useful. Doing voluntary work for others makes people feel good about themselves.

Prison

When you are the only person living in a house caring for someone with Alzheimer's it can be rather lonely and you do not have the contact with others to the same extent. Tomorrow I am starting a course to teach a prisoner literacy skills. I am a believer that people should give back, through voluntary work, to the community. I do some voluntary work with the Alzheimer's group but would rather do work in other areas as well. As my background is in teaching this work will fit in well. I am hoping that it is of benefit for the prisoner and of course it will also benefit me as I feel that I am doing something worthwhile for somebody else.

Little things

Something that most people would not realise are all the little things that a career needs to do and to think about including cleaning a razor - I had never taken one apart to clean but I think I am now pretty good at it. Another thing I need to do is to cut his finger and toe nails. George no longer copes with lots of things like this which I have to do. Luckily he has someone coming five days a week for a showere and to dress him but I undress him each day and put his onesie on which is not the easiest task in the world and takes me some time. Obviously I dress him two mornings a week.

Visit

George had a lovely visit from his grandson this week. He stayed for a few days which was lovely for George. Luckily he didn't wake early of a morning so didn't have too many confronting behaviours. I took them out quite a lot and they enjoyed each others company. George is better with one on one conversation so I left them to that quite a bit. It was a nice break from our ordinary routine.

Divorce

 Not sure how things work in Aussi re being funded while living in a Home. Here it is very strict and the rules are clear so that the person has to have little money left before the Government steps in. This can make it difficult for partners still living at home. Here also the Government can go back through your affairs for 7 years to see where your money has gone and they go through it with a fine tooth comb.

I have heard of two people in Aussi who have divorced their spouse with Alzheimer's which somehow helps with the cost of their care in a home. It certainly doesn't work here.

George is excited as his grandson is coming to visit for a few days. I hope that he doesn't find it too difficult. He loves any contact with his family.

George is often very slow with his speech and takes a very long time searching for the word he wants. He always seems better on Thursday afternoon as that is the day some other elderly men go to his club and he loves to chat with them.

Lost

At the weekend I took George down to the shop with me - he likes to go. When we got home I was unpacking groceries. He then wanted me to do something. From experience I have learnt to stop whatever I am doing and attend to his needs before any thing else. I did this and then having got side-tracked did not complete unpacking groceries. Later when I went to do this guess what? A bag was missing. I have been searching for it ever since!! George has no idea what happened to it. God only knows what George has done with it and he  won't tell me. Unfortunately there is a perishable item in the bag!!

Internet

The internet is a life line for carers. It is great to be able to keep in touch with friends and family via email and Skype. Hearing about the normal things they are doing is nice. Unfortunately my life is so organised around George and to a lesser extent Mum that there is not much I can tell them about my life although I do try to keep everyone informed. I always try to have a coffee with someone each week, so nice to chat to someone about any old thing...

George is up and down at the moment. Last night his language just didn't make much sense although he is much better today. Yesterday he wet his clothes 3 times but today he has been great. - just remember to deal with things one day at a time - the sun will shine...

George's grandson is coming to stay so I hope that he is going through an 'up' period then.

Phone call

George was talking on the phone today to an old friend who has Parkinson's. Neither of them made much sense. His friend asked to speak to me and said 'George can't speak properly'

Talk about the pot calling the kettle black.

It is interesting as George does not really realise that he is any different and thinks that he can manage things well. Like Mum he was not diagnosed in the early stages so never really understood about any of it. His friend by way of contrast was diagnosed early on with Parkinson's and is well aware that it will get worse and is obviously quite depressed. Another part of this will be the friend's wife just treats him as she always has and does not admit that anything is wrong with him which makes it more difficult for him. George on the other hand is included and feels quite normal.

Foaming

George usually uses an electric shaver but not always that well. Sometimes one of the carers will give him a shave using a razor. I have shaving foam in a can for this. George found it and obviously didn't know what it was and so pressed the button a few times; result shaving foam all over the vanity unit!!

Isolation

What a week. A neighbour was devastated when her sister died last weekend. I comforted her, baked biscuits and corn cases and fed the cat while they were away to go to the funeral. Another neighbour has just found out that there is no more work for him with his old firm. It has been a very hard time for people here as just when you think things are getting better something else comes along. I guess we are all noticing it as we all have so many issues still from the earthquakes which were 3 and a half years ago. It must be something in the water.

George has been confused all week - he is compliant which is a relief - and needs to be told exactly what to do - almost like giving commands sometimes. He does try to please but - the caregiver one morning told him to go the toilet and wipe his bottom. He did and went into the bathroom with the soiled toilet paper for the caregiver.

Something I find extremely hard to deal with and I know a lot of other caregivers also do is the isolation we often feel. Those who are not in the same situation are pretty good at telling you what you should do but the reality is really quite different. You tend to find that most of the day is tied up with doing things with or for the person you are caring for. When no other family members are here there is no one to celebrate your birthday with or Christmas. We try to make the people we are caring for feel special at these times but there is no one to make you feel special. As someone said to me you have to do it yourself. When you are just on your own it rather takes any fun out of it. Some caregivers do have family around who will come and stay with the person they care for, for example I know of someone who went with her girlfriends on a cruise while family members cared for her husband. I rely on the respite care I am given from the government which I need to use carefully. I have been told it is like looking after a small child but that actually is not true. Many mothers have grandparents or friends who can look after their children for a time this is generally not true with elderly dementia patients.

Confusion

George has been rather confused this weekend. He seems to go through periods of it and then be OK for a while. Something he did the other night was walk in and out of the room - he seemed to think things had changed somehow. He also pulls clothes, shoes etc out (as well as papers) and has piles all around the place.

I told him to go to have a shave yesterday and found him pasting pictures onto a window in the spare bedroom!! I had to take him into the bathroom. He was unable to start his razor so I did that too.

I find the best way to deal with this is just to say nothing and fix things up behind him.

Three

At the moment George is fixated by the number 3; he pours 3 wines at a time, this morning he put three hats on his head! I must admit it looks hilarious but I can fully understand how some others find it disconcerting and prefer not to visit. He sees nothing wrong with doing things like this. At home I just let it go but when we are going out I need to sort it out -

They can be like a 'dog with a bone' and it is almost impossible to divert when they have something in their head. I ignore and let it run its course.

DON'T SWEAT THE LITTLE STUFF

Busy week

This last week has been busy and I am feeling rather behind with things and tired. This is something caregivers regularly face and it is just part of it although others may think we are 'lazy'. Don't worry about how others view it a caregiver can only do their best to support their loved ones.

On Monday I had meetings at my mother's home regarding their wish to move her to another facility. As the first meeting was at 9.30 I had to get George's caregiver to come an hour early so we could get there in time. This meant that I had to get him up earlier and give him breakfast etc and have everything ready for the caregiver. I took him with me to the home as it was going to be a long morning. I did not want to be distracted by worrying about how he was.

The first meeting was arranged for my sister and the staff at the home. This was so they could clarify to her the reasoning behind this move. I had told our family members what I had been told but was unable to justify their reasoning and answer their questions so felt it was better that she got it from them. The next meeting was with a woman from the hospital board who assesses mum to see what is going to happen. She had wanted to come the week before but as my sister was in NZ and only in Christchurch that Monday they changed things around to accommodate her being able to attend which was great. Several things that I certainly was unaware of before all this: An EPA can be superseded by the hospital board. If they want to do something that the family does not want they are able to. An assessment is done through notes and not necessarily from people who see the person a lot. The doctor who sees mum for about 5 mins every 3 months had written incorrect statements relating to her abilities at this point but only seeing her for such a little time makes it impossible for him to know. The two staff members who were there; one has only been at the home for a couple of months and had 'cared' for mum one morning, the other used to have a lot to do with mum (over a year ago) but has been working in another part of the home since then. I am not sure how valid anything they could say would be. I see mum twice each week but was not asked about anything. My sister spoke about how she found mum when she came over to see her and showed videos and photos of mum. The person from the hospital board knew that the wishes of the family were for her to stay where she was and that is what is happening. It was nice that there were three people there to voice Mum's wishes; my sister, the Patient Advocate and me.

On Tuesday I took George to Harakeke club and then my sister and her husband to the airport before teaching a small boy with his reading. It was lovely to catch up with my sister while she was here. She spent a lot of time going to see mum which meant that there were two visits I didn't need to do while she was here.

On Wednesday I spent about 3 hours with the accountant going over mum's George's and my books for the financial year and then I had to get more continence pants for him.

Thursday I dropped George at Harakeke and went to have coffee with some women I used to work with which was lovely.

On Friday we visit a friend who is unable to walk properly at the moment due to spinal problems and he therefore stays home by himself during the day. We go to chat and keep his mind off the pain etc. His wife is one who visits Mum each week so I feel that in some ways this pays her back and also George and the husband enjoy chatting. That afternoon I took George to East side Alzheimer's group. All these things he does is for socialisation which helps with the Alzheimer's. Friday morning I need to change the bed as George had wet it.

Today I saw Mum this morning. I dress George at the weekends.  I leave George at  home with a DVD on and morning tea on the bench and then get him lunch as soon as I get in. Then I get on with washing and other things here.

I am now putting George's onsie on back the front to try to stop him getting out of it during the night (last four nights) so far success....

I have managed to get a small amount of gardening done and luckily the lawns were done not long ago and don't need to be done again yet.

Mooning

Something George does is he often returns to the lounge after going to the toilet without his trousers and continence pants on. I then have to tell him how to put them back on!! Luckily this has not happened when we have been out but could be a rude shock to others. This is where it becomes difficult as he is going to have to miss out on his son's second wedding as it is in Auckland. It is not possible to travel any more.

My sister has been in NZ for about 10 days and it has been nice to catch up with her. She and her husband have visited Mum, their friends and done a tiki tour while here. They stay at motel while in NZ.

Tomorrow we have meetings at the home as they are trying to move Mum to a different home as they seem to think she no longer shows dementia signs!! After 3 and a half years of living there this would be traumatic for Mum as she regards it as her home and knows the staff. Putting her with strangers is the last thing I would have thought she needed at this time. It is lucky that my sister is here to attend with me. I have also organised for a Patient Advocate to come as well. Because I will be away so long I am taking George to the home with me. I have therefore had to reorganise his care and our morning routines, so much to remember to do just for a simple thing like being ready for a meeting.