Merry Christmas

I hope that people around the world are enjoying a lovely, relaxing Christmas.

I spent nearly four hours with George today. He was very confused. He did not know who I was. I told him I was Kewpie. He smiled and I asked if he knew who I was. He told me I was his wife. I talked to him about his boys but was just getting a blank look.

I remembered that I had downloaded a video yesterday from YouTube and compressed it to put it on my tablet (no internet at the home). I had put the tablet in my bag this morning to take to John. The video was taken nearly 30 years ago and had been on TV over here. It was John's son's band playing an original number of theirs.

I put the video on and showed him the tablet. His face lit up. He certainly remembered that and we then were able to talk about his last trip here and the things we had done. Visual stimulation, so powerful.

George can no longer use cutlery properly so I cut his food up and he uses a spoon. Often, like today, he is unable to put food onto the spoon so I do it and then he puts it in his mouth. They had a beautiful lunch with roast lamb, turkey, carrots, peas, pumpkin and roast potatoes followed by pavlova or steamed pudding. They have a vegetable garden at the home so the veges were fresh from the garden.

When I left he was sound asleep.

I had a community nurse round yesterday to change my dressing. She had forgotten to get a paper signed so came back today. She looked at it and decided to change it again. Someone is coming in tomorrow to change it again. Unfortunately my lower leg is swelling when I do anything so need to try to keep it up and drink plenty of water. I am taking Rescue remedy and Arnica. When your body goes into shock like mine did it takes some time to recover.

Time is a great healer. 

Shingles

Shingles is not pleasant at the best of times but for someone with Alzheimer's it is not good. It causes more confusion and of course can be quite painful. It is difficult to know exactly how they are feeling as they are not too sure themselves. George no longer seems to be getting the very high temperatures which he was getting. That was a real problem as he was shivering as he felt freezing cold. We have had a cooling fan going to keep his room cool. He is taking painkillers regularly. His mobility is not good at all and he is not too keen on showering or getting dressed. One day, when he was particularly bad l got him up out of his chair (a mission which took about twenty minutes) and onto the bed. He flopped down and nearly fell off. Using my body I helped him wriggle in to the middle. He promptly fell asleep, very high temperature at the time.

You need to keep a very close eye at these times.

Need to slow down

today I went back to the doctor for the bandage to be changed and the wound to be checked. I took in wine and chocolate for the staff to thank them for the wonderful treatment. Apparently the doctor who stitched me up - it was his first day at the centre! What a welcome! Frankly I don't remember that at all.

After the doctor I went and spent time with George. He is certainly confused at the moment. I put some of his lunch and told him to put it into his mouth, "how do I do that?".

From there it was off to the lawyer to get a paper signed and finally home nearly five hours later.

I was buggered and very trembly, resting ever since. I will be with George on Xmas Day but I am not going tomorrow - I need to get myself right or I am no good to anyone. On Saturday a Community nurse is coming to change the bandage again. I will also need to ring the medical centre to find out when the stitches come out.

It never rains but it pours.

Peewee emerges

For over a week George has been suffering from shingles. While he has had this he is kept in isolation so I have been spending a lot of time with him. I am also taking DVDs for him to watch when I leave. He loved Mary Poppins and yesterday it was Casablanca which he loves. As can be expected he is more confused than usual. A week ago when I asked him who I was he couldn't get his tongue around Kewpie and it became Peewee.  It has remained Peewee ever since. Kewpie has morphed into Peewee.

Unfortunately I was in the garden yesterday when my leg slipped down and an old branch stabbed up into my leg, in the inner calf. The blood was gushing out including clots. I put some bandages around it which did not stem the flow of blood. I got into the car and drove to the doctors. Once there I fainted and my body went into shock. Very nice. A couple of times I came round to hear the doctor saying she couldn't find a pulse. I was sweating profusely and unable to move. Very scary! The ambulance came and took me to hospital. I was hooked up and luckily enough was better enough to go home to my own bed after about six hours. When I was asked who they could ring I was very aware there is no one here, it is just me. Luckily I have some good neighbours and friends. For the last 6 years I have been here for Mum and George but I am on my own.

VERY quiet today.

6 month review

Over here, Down Under, caregivers have a 6 monthly review with the RN at the home. 

I had my first one for George yesterday. It is well known that many people deteriorate when they go into a home. This did not happen with Mum and nor is it happening with George. The RN and I think that is probably due to the constant visits that George has from me. Mum too, had visitors every day. While obviously this does not mean that the disease won't progress it seems to go at a slower rate.  George's mobility continues to be a problem, depending on the day however he hasn't had a fall for a long time. His skin is very fragile and will bruise or bleed just by bumping against something. There are days where he really won't stand and walk around and others where he is fine although always slow... 

The home will not give any pill or drops etc without the say so of the Doctor. I am getting Arnica and Rescue Remedy so the doctor can chart these so George can be given these as required. 

George eats well when he is having a good day but on a not so good day he just moves the food around. This has been going on for about a year. The RN feels that the milkshakes I take in contribute to George not losing weight which is good. 

This is so similar to Mum. As I am in and out all the time I know what is going on so there are no surprises. 

Good that we are keeping the status quo at this stage.

Kewpie has returned

Today when I went in to see George I greeted him by saying 'hi darling how are you today?'. He said he was fine. I then asked him who I was. Straight away he said 'Kewpie'. It was nice she had returned. Today we were in the 21st century.

George told me he had been round to visit me but I wasn't home. I said that it must have been when I was coming to see him so we must have crossed paths. 'what a coincidence' he said! He certainly feels that he leads an active life....

During the time I was helping him with his lunch I saw he was in pain. It is to do with the catheter he has. I do find that it is important that I keep monitoring him and constantly insisting that the carers do to to ensure that George is not in pain.

Living in the past

Today, when I went in to see George he was sitting at the table just about to start his lunch. I said 'Hi, how are you today?'. For the first time he said 'who are you?'. During the entire time I was with him he had no idea who I was. He said that he was expecting someone to come to see him as he had just arrived in Christchurch from Invercargill. He had driven up. This actually happened in 1960. However at the time he was married with a young son. He did not have any knowledge of those slight details. He was excited about his new job at the Press newspaper. He asked my name so I said 'Diane'. He said that I must be a nice person. I then thought and said 'Kewpie' which is what he has always called me. 'That's a strange name' was the reply. He mentioned he had a 'best friend'. I said 'Ron'. He was thrilled, 'you know him too'. After I replied in the affirmative we had an animated discussion about Ron, mainly him doing the talking. At various times I called him JK and Glassy. He was thrilled and recognised his own nicknames. He wondered he had called him Glassy. I told him I thought it was Scott. He wasn't sure who Scott was but thought he was a little boy. He really appreciated me helping him getting his lunch on his spoon making it easier to eat. All in all things went pretty well I guess. As usual George was the perfect gentleman. At no time did I try to tell him who I was, he was so happy just being in that time frame.

Many people in this situation just say, 'oh he/she doesn't recognise me any more' and use this as an excuse not to visit. I don't agree at all. We just went with it as though his reality was reality. He was happy as Larry to discuss all that was happening. He was happy in the moment and that is what it is all about, Having the best quality of life we can give them. Go with the flow.

Be interesting to see what decade we are in tomorrow. 

Brain stimulation

Another blogger, Paul, regularly uses YouTube songs to help caring for his wife. He finds the songs soothing for his wife and the two of them sing and dance with the songs. Just lovely.

Within the last week a small clip was on a regular TV programme here. They present it as something  remarkable a rest home here stumbled on by accident. They promote it as being cheap,
and cheerful and reveals glimpses of loved ones long gone. They say "it is almost magic.

After watching this I have decided to set up George's room with lights and music. I have downloaded a whole lot of videos from YouTube which show Xmas lights and houses which are set to music. I am putting these all together to make one DVD to play in his room. 

I have also been buying cheap lights (made for Xmas) which operate on batteries. For example I got a small tree today which changes colour and is about 20 cm high. I am going to get a lava lamp to go in there and look for some solar lights. 

I can see that this would certainly stimulate the brain and these things can easily be turned on and off as needed. 

It is so great how we all share these ideas and see if they work for us. 

What a difference a day makes

As I have been driving around I have been looking at all the cabbage trees which are in flower. According to Maori when the cabbage trees flower early we are in for a long hot summer. I was looking and thinking about a wonderful summer ahead.

I just love these trees and we have several of them on our property. Unfortunately they are a pain to have as they shed their dried leaves and these need to be picked up and put into the rubbish otherwise they get caught in you mower and wreck havoc with them. The leaves can't be composted.

On Sunday a reasonably tranquil day, George loves seeing me each day and some of our friends also called in to see him.

At midnight that night

a 7.5 earthquake struck

I was in bed and was woken up. This earthquake was different from the others we experienced over the last six years. There was no noise and it just rolled back and forth for what seemed and eternity. I was on the first floor. The house

was creaking - due to the earlier damage. I lay thinking "should I stay here or should I go outside". I thought that if I went outside and the house came down I would be underneath it while if I stayed where I was and it came down I would be on top of the rubble. Totally irrational thoughts I know.

We were evacuated until after 8 the next day. I was dressed in a onesie and on my own in the car, not pleasant.

The main damage was in Kaikoura which has been cut off due to road damage. We are all thinking of them and trying to provide the appropriate help for them.

I went straight to George yesterday morning and watched the news about the earthquake with him. He had felt the earthquake but was not worried which was a relief.

I am off to see him soon and then attending a meeting with other carers and the home personnel.

There are certainly a lot of times when it is difficult to be dealing with everything by yourself.

I am hopeful that one day life will continue gently and without incident.

Stagnating

I know that people with dementia need to keep having their brains stimulated. It is well known that when people are put into care that they go 'downhill'.  I have seen this happen.

A man, Roy, was diagnosed with early onset dementia. He lived at home with his family. He went to the same club with George. He was always talkative, enjoyed a good sense of humour and was enjoying life. He went into the same home as George at the same time however he was still classified as rest home level and not dementia. I saw him most days when I went in to see George. He knew who I was and always greeted me. He always had a twinkle in his eye. Now 5 months later, the light has gone out of his eyes, he is now in a dementia unit with George, knows no one and sits in chair and sleeps the day away. It is so sad. I have never seen anyone come in to visit or take him out.

George has remained at the same stage. Obviously carers cannot ensure that all the residents are engaging in activities to provide stimulation. By going in each day I ensure George engages in everything even when he doesn't want to, for example exercises. I do it with him and then he really enjoys it. I also talk to him so much about his life, his family and his friends. We also talk about what is happening in the world. George getting the one on one helps him, I did the same with Mum.  I always have chocolate or marshmallows which everyone shares. They all think I am there for them too.

I look at how well Kate Swaffer is living her life. Five months ago I would have said Roy was in a similar situation. Are we letting these people down? Do we need to concentrate on helping people live well and helping those around them to support them? 

As I have always said "quality of life"

Kate Swaffer

Kate Swaffer has just been a keynote speaker at the NZ Alzheimer's conference in Wellington. 

As many of you will know Kate was diagnosed with Early onset dementia at 49 years of age. Since her diagnosis she has gone on to complete her Bachelors and Masters degrees and is now working on her doctorate. She certainly did not take her doctors advice and give up on life. 

Tonight she will find out if she has been named as the South Australian winner of the Australian of the Year for her work with dementia. Good luck Kate. 

I am interested in how diagnosis is now so early. Early this century my mother was concerned about her memory and talked to the doctor about it. He told her it was nothing. I have found that many doctors don't really want to know about Alzheimer's. 

She insisted on having an assessment at the hospital. My mother was a highly intelligent woman who always looked after her health. At the hospital they obviously gave her a cognitive test which she was easily able to achieve. They then told her she was in the top 25% for her age group. Of course this does not take into account on where she was a few years before that - no base line to compare to. Less than 8 years later she was diagnosed with Alzheimer's Moderate to Advanced. I later realised that she would have been in the early stages when she first went to the doctor. I have wondered if there was something they could have done at that stage or whether it was better to live a great quality of life for those years. I am not sure at this time what is better. I know that when we know more and have better drugs that early intervention will hold the key. 

back to normal

George's son left Sunday afternoon. What a wonderful visit for George.

It does amaze me how quickly they change from day to day. Just when things are going really well the condition makes itself known again.

Yesterday, when I went in, I sat next to him. George was dozing. When I touched his arm he looked at me and said, "I went to school with him". We then spent at least half an hour talking about his school friends. It took me ages to turn the conversation around to the visit. He did perk up and gradually we talked about what we had done. I find that sometimes he remembers things but always I keep talking about this type of thing so he doesn't forget his friends and family.

This video is just about New Zealanders, also known as Kiwis. Just a bit of light relief I found on youtube and downloaded to show George. 

Organizing ourselves

George has had his eldest son here for the last three days. they have spent so much quality time together. We took everything pretty slow and he was very much part of the conversation and was quite lucid most of the time. There were times when he was not totally coherent but we just went with the flow and he seemed to come back on track.

During this time George's son also had various things to do while he was here so we organized it all and it worked out really well. Lovely for me too to have someone to chat to and to show the building repairs to...

Yesterday was the last day and George was tired out. We stayed in the home with him and while he would wake and chat he showed no desire to move. The two of them shared a bottle of red wine which George loved.

It is so lovely to have these family times as George's son will have this lovely memory to take away with him of the wonderful time they spent together. 

Enjoying family times

George's eldest son is over from Aussi at the moment.

When we arrived at the home today he was asleep. Initially he only saw me but couldn't remember names. We took him out to Honeys cafe. He loved it and with the attention became less confused.  He had a lovely time. We got back to the home in time for Happy Hour and we left him ready for a red wine. There were several visitors in the lounge and we all had a great chat. It was lovely the real sense of 'a group of friends enjoying each other's company' from everyone. I think the fact that the visitors were seated right around the room and we were all contributing to the conversation and joking. All the residents were joining in. Just lovely to see.  This provided a great quality of life for all of them today.

When we got back I asked George to open the car door while his son got the walker out. George opened the door and promptly shut it again.  He didn't know what to do once the door was open. He repeated this three times. Finally we managed to keep it open.

One of the other residents, Barney, was waiting at the door when we arrived. We sat down until he moved away. We went inside with a carer. Barney was at the other end of the hall, heard the door opening...  He turned, and with his walker ran down the hall to get out of the door before it closed. Luckily he didn't make it.

We try to be careful that we do not tire George while we are out. Tomorrow we are taking him out again.

Instead of a home

I love this video from Positive Energy

The cost of keeping people in a home is horrific. Unfortunately many a true word is spoke in jest.

Where does the time go?

I don't have the answer to that question.

I thought that I would have more time now but it is not working out that way.

I go to see George most days and it is good if I am there for some of the lunch time. This is when the major meal of the day is served. George can no longer use cutlery properly. I ensure that all his vegetables are cut up, the carers do cut up the meat but he needs everything cut up so it is left. I also need to tell him how much he likes the various meals, then he will eat the meal quite happily. Unfortunately the carers can't do all that one on one for each person so often many do not eat enough.

George's home caters for rest home level and dementia but not hospital level care. A fall often results in a stay in hospital followed by a move to another home catering for hospital level care. It is something I need to think about for the future.

Last weekend George's youngest son visited for a couple of hours on the Sunday. He had not seen George for over 18 months. George was having a good day as he had slept in that morning. They had a good time looking at old movies about the family.

This weekend his eldest son is visiting for a few days which is great. With the two of us we can take him out. With his poor mobility it is easier with two of us and the risk of a fall is reduced.

The following weekend I am going away to visit my grandchildren. They have missed out on my visits and it is important that I get to see them. We are in contact via Instagram and regular phone calls but it is not the same.

So hard when you are pulled in so many directions. It is especially hard when families live so far apart.

Ask a stupid question...

Most of the time, when I visit, George is accepting of what is happening and appears happy. 

This week I nearly burst into tears. 

George was OK when I first went in and we chatted about various things as George had some chocolates. He was rather confused but reasonably happy. He then got up and started walking using his walker.

"Darling, where would you like to go?" I asked. 

To my horror I watched as his face crumbled and he nearly burst into tears as he whimpered, "I want to go home". 

I quickly started talking and saying about how our house was being fixed after the earthquakes. He calmed down and we walked down to the lounge. 

This is the first time he has said anything about home. 

I felt awful for the rest of the day. There are times when it is very demoralizing, very sad. You can only do your best and everyone needs to be safe and well cared for. Unfortunately the time does come when one person is not enough to look after the needs of a person with Alzheimer's. 

Time Frame

Often I am not sure what time frame we are in. You often feel like you are in the middle of a Dr Who episode.

From: https://wall.alphacoders.com/big.php?i=44447 

Today George was very excited to see me and tell me of the adventures that took place last night. A group of young men were suddenly told to do something - I was unable to fathom exactly what it was. They were then suddenly told to stop. Through questioning George told me he was one of the young men. I suspect it was when he was in the army reserves after the war. George wasn't too sure about that one. This conversation took over an hour and there was no way George was going to be side tracked. I just go with it. 

Yesterday he also had had night time adventures when a little man in my team had done something wrong. He wants me to explain things to the little man. Despite questioning I couldn't figure out who the little man but have promised to explain about appropriate behaviour to him.

A spring in the step

George has been very good over the last week and we have had lots of conversations about his son's visit. He also keeps asking when he is coming back as he obviously remembers that he is coming. He is quite happy when I tell him it is isn't for a little while and I will tell him when.

Today when I went in he was dozing in a chair and although he woke up straight away he was not very 'with it'. He needed a shave and when I gave him the shaver he just dropped it down. I shaved him with lots of moaning and groaning going on, however we got there. He did enjoy his milkshake. I also take in large bottles of drink for him, just as I did with Mum. His language was often jumbled and not very coherent. Getting him to the table for lunch was a mission.

I was feeling pretty down when I left the home. On the way home I stopped to get petrol. Here oldies get 8 cents a litre off when they use their Gold Card. When I went to pay the bill the young man serving (in his twenties) looked at the card, looked at me and looked at the card and looked at me. After doing this a few times I asked if there was something wrong. He said 'well you can't have had this card long'. I did not tell him he needed to go to Specsavers and  left that garage with a spring in my step!

I have been laughing as I have been reading some of Paul's blog. He has said how he feels at the patronizing way some people speak to him. I feel exactly the same way! So do the people with Alzheimer's. I hear people saying that looking after those with dementia is like looking after a child! WRONG. Talking to them as though they are a child is the best way to get their backs up. Mum used to get so upset and would often ask me to explain to others that she was intelligent and knew what she was talking about (even when she didn't). You need to take what they say with dignity and respect and accept that this is their reality and talk to them as though that is exactly what it is.

From: https://nz.pinterest.com/kathielangford/nursing-homes/ 

Busy, busy, busy

I don't know where the time goes but I certainly don't feel 'retired'.

Last week George's eldest son unexpectedly arrived for a visit. As I am camping in a munted house at present it wasn't something I was prepared for. I rummaged through boxes and found some bedding to make him up a room. Luckily he didn't mind camping too. We spent a lot of time with George and took him out during the day. With two of us we were easily able to manage it. We paced things each day visiting coffee shops and a pub! George just loved it. He had some really good lucid times where he and his son had a great conversation. We had to be careful not to wear him out. One day we did not go out as George was not having a good day and was unable to stand up. It was lovely that he was here for nearly a week so we had the luxury of taking each day as it came, as I usually do. It certainly provided George with a great quality of life during this time.

George has had some really good days since he was here as well as some very sleepy days. He really loved being fussed over by the two of us and it is wonderful to know his son is coming back next month.

In discussions with George when we were talking about what the three of us had done George said

It was marvellous

Father's Day

Today is Father's Day. I always try to make it special for George.

George was having a good day and was very lucid. He had had a good sleep and a big sleep in which makes a difference.

One of his sons sent a card and a gift - chocolates which are appropriate as he has developed a really sweet tooth like Mum. We carefully put these in his top drawer where we are hoping others won't find them!

I took in his regular milkshake as well. I also took a card from all his sons.

He cannot open things any longer so I open them and just have the contents peeking out. He is then able to get the card or gift out himself. He no longer makes sense from reading so I read the cards for him. He was thrilled with everything.

We looked at photos of him with his sons. This way I try to ensure that he knows them and who they are.

I have always believed that Mother's and Father's Days should be about family and doing something for the person, not just grabbing a gift. Spending time is important!

When I was teaching the children and I brainstormed all sorts of things their parents would like. These did not cost money but time and effort. It might be cleaning the car, doing the dishes or getting the parent breakfast in bed for example. The children then made a cards and a voucher for their parent. They then fully understood that the parent could use the voucher as appropriate.

Parents and children all liked this.

Something I did today was to text someone who has been a wonderful father to his children, I just told him what a wonderful father he is.

So good to celebrate days to make them special. Although George may not remember it for long you need to enjoy being in the moment.

New research

Some new research on our News tonight deals with Alzheimer's disease.

An antibody that can almost completely clear the visible signs of Alzheimer’s disease from the brain has been discovered in a breakthrough that left one scientist “trying not to get too excited”.

Researchers scanned the brains of people with the degenerative condition as they were given doses of the drug, which is based on an immune cell taken from the blood of elderly people aged up to 100 who showed no signs of the disease.

After a year, virtually all the toxic “amyloid plaques” that build up in Alzheimer’s patients appeared to have gone from the brains of those given the highest doses of the antibody.

The scientists, who described their results in a paper in the journal Nature, also said the patients showed signs that the rate of their cognitive decline had slowed.

Be great if this does follow through on its promise. 

The article points to 7 risk factors 

Depression

Smoking

Low education

Hypertension

Diabetes

Too little exercise

Obesity

I was extremely surprised to see no mention of contact sport or alcohol....

Gene Wilder

So sad to hear today of Gene Wilder's death at the age of 83. I loved him in films like Charlie and the chocolate factory. I confess I had not realised he had Alzheimer's.

Today I also read On the Day I die .

This is on JOHN PAVLOVITZ's web site.

It starts:

On the die I day a lot will happen.

A lot will change.

The world will be busy.

On the day I die, all the important appointments I made will be left unattended.

The many plans I had yet to complete will remain forever undone.

There is a lot more to give us things to reflect on.

Wedding anniversary

Today was our thirtieth wedding anniversary!

I took in two chocolate sponges for everyone to have for morning and afternoon tea today.

George and I sat going through his books and talking about all sorts of things that have happened over the years. George was having a good day and enjoying reading his books, talking and eating chocolate.

Another resident had received mail which he couldn't open. It had come to him from his son in Australia and was delivered to the home. I said I would help, so with a group of seven onlookers we started. I used a key as a letter opener which they all thought worked well. When it was opened I pulled it out a little way so he could pull it out himself. He wasn't sure what it was so I read all the card to him - with the others listening avidly. There were also three photos (luckily with names on the back) so we talked about those and I wrote his name on them so they don't go missing. All up that was a half hour with all those people really involved and joining in. They were all relaxed and so happy.

While we were doing this the caregivers were getting the lunch ready. Hopefully they try using some of my techniques - I always try to model how the carers should be, same as I did with aspiring teachers.

Passing problems along

The comments Amazing Susan made on my last post reminded me that I had not shared my own thoughts about how we sometimes deal with those of us with difficult behaviours.

I was a teacher for many years. During this time I regularly stood up for those children that other teachers wanted to be 'stood down'. In the old days this was called expelling a child from a school. My attitude always was that the failure was the schools and that we needed to have strategies to deal with these children. All that you do is give the problem to another school! I could never see how anyone could think was beneficial to a child. While I was there no child was 'stood down'.

Some time ago I knew of a case where a person was in a home. She had early onset Alzheimer's and was very strong. She frequently lashed out and many caregivers were frightened of her. One day a family member came in just as this woman hit the family member's mother. A formal complaint was made - result. The woman was taken away for reassessment and moved to another home. Exactly the same as in the education system, pass the problem on for someone else to deal with.

I spoke to a senior staff member about the minister and said about how our education system deals with the problems and that I hoped that they were going to look at how they had failed rather than blame him - this was my way of dealing with these things in our school.

I am now watching this space...

Aggressive behaviour

In the Home with George are several men as well as women. Two of the men are pretty big. One of these men was in the American navy and speaks with an American accent although he is actually a kiwi. He walks with a walker.

The other man does not have mobility problems. Previously he was a minister in an Anglican Church. He wanders around a lot saying 'Jesus loves you' over and over. Unfortunately he tends to bother women and will often hit them.

Two days ago I saw the navy man had a black eye. I asked him if he had had a fall. He told me no he had been in a fight and I should see the other guy who is now in hospital!

Apparently the minister was hitting a woman. The navy man went over and told him not to hit a woman. The minister turned around and faced up to the navy man. They then got into a fight.

Result: navy man - one black eye, minister - fell and broke his hip.

It is very difficult for caregivers to cope with this sort of happening especially when there may only be one of them on duty.

Thank goodness George was not there. He is not used to aggressive behaviour and would have been shocked had he been there.

A poem for all of us

This is one of those poems that all caregivers need to read frequently

Do not ask me to remember

Do not try to make me understand

Let me rest and know you're with me

Kiss my cheek and hold my hand

I'm confused beyond your concept

I am sad and sick and lost

All I know is that I need you to be with me at all cost

Do not lose your patience with me

Do not scold or curse my cry

I can't help the way I'm acting

Can't be different though I try

Just remember that I need you

That the best of me is gone

Please don't fail to stand beside me 

Love me till my life is done

Being an advocate

Something I have found is that it is no good thinking that because you have put a loved one into care that you can leave them there and visit occasionally. Research tells us that when caregivers see the residents as people they treat them better. In order to do this the family can tell anecdotes about the loved ones life. Having books and photos about their lives are always of interest to others and it is interesting to see their attitudes change as they realise the interesting lives the residents have had.

I go and spend time with George every day. George hates being pushed into hurrying and then he resists making things more difficult for the caregivers. When I see this happening I, tactfully, explain that I think they may find it easier if they do....

I have seen a carer take down his pull-ups to check the catheter. The pull-up was soiled and the carer thought it was OK just to pull it up. I was not a happy bunny over that one.

It was the same with Mum. You need to watch and monitor some of the carers, others ofcourse are excellent.

Just remember that your loved one may not be able to make their needs known and it is important that they have someone ensuring that they get the best care possible.

Support groups

George enjoys seeing me each day. He is still aware of who people are and seems quite settled.

When the carers ask who wants to go through to another area for an activity I have noticed that George just sits there. I suspect he doesn't know what is going on. I encouraged him to go one day this week when I was there. It was some entertainers who come in each week, they sing and the whole thing is very interactive to include the audience. George loved it. I have told the care givers to tell him to come so he doesn't sit back. He loves these things but needs the encouragement and support to go.

This week I have set up two support groups for people. The first one is for people who have someone in care. There are six of us at this stage and we meet in a mall. Our buses go between all the malls in the city and are free for those over 65.

I made sure I was there a few minutes early to greet the others. The first to arrive was a woman who recently put her husband into care and is suffering from feelings of guilt and is rather depressed. Her face lit up when she saw me waiting. When we left she told us all how much better she felt after the time we spent together and really she had a spring in her step as she left, so worthwhile. Everyone felt that they wanted to keep the group going so we have arranged monthly meetings.

The other group I set up is for parents of some of my old pupils. I found out by accident that one of my old parents is suffering from depression and not going out. She would also lock her doors and not answer. She really wanted to be able to out. I organised for another one of my old parents to pick her up and the three of us met for coffee and a chat. She loved it and felt very comfortable. We have organised to meet weekly. Many people here are still traumatised and suffering from depression after the earthquakes. I realise that people who have not been through some of these things would think 'get over it'. It is not that easy.

So good we can share information, have a laugh in a relaxed informal manner and build up a rapport to support each other.

Summit

An interesting Summit starts today

http://alzheimersdementiasummit.com/schedule/?inf_contact_key=a901b08af2a831f82cb8c00c0463ee2dc5192a90b8a7d0425313ac91af3664ec

It is online and free!

There's a series of videos by various speakers on different aspects of things to do with Alzheimer's. I have registered and looking at the topics it looks worthwhile taking the time to register and view.

Being on your own

While you are caring for a person in your own home gradually, as the disease progresses, their needs completely take over your life.

I found that I saw less and less of my friends. We stopped going out during the evening. You actually become rather isolated. During this time it is important to retain the contact with others as much as possible. I tried to have coffee with friends whenever I could. Of course the effects of the earthquakes has also made this difficult.

My family had all gone so I only saw them briefly when they came over to see Mum. My son and grandchildren are in the North Island and I always made time for them whenever I could. I live in our home town but doubt that my siblings will ever return now our parents have gone as they have made their lives in Australia and there is now nothing for them here.

Since George has been in care it has been a real time of transition. For over five years my sleep has been very broken. My sleep patterns have not yet returned. I don't worry about it and several times have gone back to sleep and not woken up until after 9 a.m., very unlike me. I haven't had a lie in since I don't know when.

I am now 'camping' in my munted home while the flat where I live is being repaired. I now live on my own for the first time ever. It is a funny feeling. I am pleased I have my cat, Fluffy Bum, who sleeps on my bed at night which is rather nice.

I am having to make sure I eat proper meals! I must admit though it is just things I feel like.

It is lovely to not have the mess everywhere.

I am organising a group for people who have been carers and have recently put the person into care. We are meeting monthly at a cafe. It is good for people who are similar stages to get together like this as these people understand what you are going through.

Life style choices

There is no known reason why some people develop dementia. Often the people who do in fact develop dementia are people we do not expect it to happen to and of course the reverse is also true.

There are many articles written to help people try to keep their brains active in later life. It is important to realise this is no silver bullet as many people who do 'all the right things' will still develop dementia.

However we could do a lot more to educate people during their younger years.

Contact sports are played without any thought to the damage that is being done to the brain. Here people played on while suffering from concussion. It was considered that you did not leave the field unless you had to be carried off. Now people who are knocked out need medical clearance before they can play again. A good start but I do think people need to be aware of the dangers that may occur in later life.

Most adults have little understanding about dementia unless they have been directly involved in the care of someone with it. I personally had very little knowledge about it before I fell in the deep end! I have read widely and researched to find out as much as I can but boy there is so much to learn and no answers!

People who have the answers usually have little understanding.

Alcohol is part of our life style. Younger people often drink until they pass out. People who drink to excess often get involved in physical or verbal altercations. Often they are very aggressive but on sobering up have no memory of their behaviour or what they have said, often very hurtful and erroneous comments. Domestic violence is often associated with alcohol. Alcohol related dementia makes up a significant number of those people with dementia. The majority of younger people have no knowledge that this is a possible outcome of this behaviour. Teaching about this should be part of our Health curriculum.

Turkey

Today we learnt about the problems in Turkey. My heart goes out to them as well as those in Nice and the USA. What an unsettled time we live in now, maybe it is just as well my finances don't allow me to travel. Since Britain's referendum we here, in New Zealand, have received a lot of applications from British doctors and nurses to come here to live. A lot of New Zealanders are returning home and surprisingly many of our neighbours are relocating here. Part of it is that our economy is not as bad as many others and we are known as a relatively safe country.

George's home is still in lockdown however I still go and see him and ensure he is OK. He just loves those milkshakes. I figure that they are giving him sustenance as well as fluids. I hope they all recover soon. 

Money flies!

Once you have a parent or spouse go into care you will notice that money flies out of the window and honestly it flies out quickly.

Our economists have worked out how much people need to save in order to be able to have a good standard of living once they are retired.  Unfortunately this makes no difference for the carer. In New Zealand our Government helps with the fees when assets reach less than one fifth of what the economists recommend you need for retirement. Unfortunately this means that carers will not have the retirement life style we all dream of, for example travel. We will always be in the position of needing to watch every penny. Unfortunately more and more of us will be in this position. I must have been very bad in a past life to have been responsible for two, very costly.

Luckily George has dodged the illness in his home - fingers crossed! He is eating well but still very frail. When he first went in he often went out for a walk, not now! Carers in the home take the residents out for a walk when they want to go. They also have a nice garden area to go outside to wander around or sit in the sunshine. We have been having a very mild winter with lovely warm days.  George certainly feels the cold and wears a lot of clothes. This seems to be the same for a lot of the others too.

Lock down

George's Home is in lock down at present as many residents have vomitting and diarrhoea. Keeping fingers crossed at the moment as so far George has not been affected. I am still popping in with milk shakes and things but I am not staying for long.

Often, when I arrive, George will be seating in the lounge and be sleeping. After a while he will wake. He still recognises everyone and enjoys looking through his books and photos. We discuss the photos and talk about things we all did together. He also enjoys hand massages. His language is often really good and we will have a long and, sometimes, involved conversation. Another day his language makes very little sense, it varies from day to day.

He is quite happy in the home and does enjoy being with others. The unit he is in only caters for twelve residents which is ideal for him. He is getting to know some of the other residents many of whom and still operating at a higher level than he is.

Going out

George has been going downhill since going into the home. His mobility is really going downhill. Many days they use a wheelchair to take him to the lounge, a very short distance. When he first went into the home he was using a walking stick. Now he needs a walker and sometimes even that is not an option. This has made going out not possible. I am hoping that things improve. He is very frail. 

He still has a certain amount of short term memory and remembered some friends seeing him yesterday. I go in every day and take in plenty of drinks such as Cranbeery juice, lemonade and ginger beer. Most days I also take him a milk shake - just like I did with Mum.

Families

My mother was a strong woman and a matriarch in our family. Her wish was that all of her daughter's would always there for each other and that they would always have each other's backs.  When I was looking after her Mum used to ask me if my sisters looked after me like that too. Ofcourse at this stage Mum was suffering from dementia. She herself was an only child and I am sure that she would have loved to have a sibling. It is so sad when you hear about siblings 'ganging up' against one of the siblings. I have always believed that blood is thicker than water but unfortunately this does not seem to always be the case. Nurture family relationships as they are important. This is especially important when there is an elderly parent or other family member in care. Naturally due to various circumstances (such as work commitments or geographical locations) one of the siblings will be the main carer. Be kind to this person, support them and remember how they are taking the main load of everyone's responsibility. One of the groups I go to for carers have spoken about how some of them feel isolated due to feeling 'on the outer' by their siblings. It is really important for everyone to work together so they can achieve the best quality of life for their loved one.

I know Mum would have been thrilled to know that two of her grandchildren were there for the celebration of her life. One of her grandchildren also put a lovely tribute to her on her Facebook page.  That would have meant a lot to Mum to know how these two felt about her.

Neurological conditions

On the News last night they pointed to eleven hundred neurological conditions, none of which have a known cure. Rather frightening. Here they are using boxing classes to help those with Parkinson's disease. One man said that while he didn't expect to live longer he expected to have a better quality of life. It is known that all exercise helps any of these diseases and therefore anything that can help is to be encouraged.

Politics

My goodness so much going on in the world today; Britain has left the EU, Australia can't work out who will be the next government, in the US Donald Trump is taken as a serious contender for President.

Here, in New Zealand, we are a small country in the south of the Southern Hemisphere. What happens in other countries throughout the world effects us. We rely on exports and imports. We only have just over 4 million people here so what happens in other countries is important to us.

I tell George about what is going on. Now he is not capable of any understanding of what is going on. Sometimes I think this is a good way to be. Don't know what is going on and don't care! I guess there are also plenty of people who are like this who do not suffer from dementia. I am reminded of the Hawaiian saying 'don't worry, be happy'. A great mantra for all of us.

I took George some new shoes today. They have a well cushioned sole which I am hoping will help with his mobility.

Watch this space...

Mobility

George's mobility is certainly not as good as it was when he went into the home. Even with the walker he will only go short distances. At the moment he prefers to sit and chat. He loves chocolate milkshakes so I have been taking them into him. It is important that he drinks a lot as he seems to be getting urinary infections. These make people more confused. Mum was the same.

I have found that I am as busy as ever. Going to see George each day takes a considerable chunk out of the day. I am also looking at stuff for the flat such as colour schemes. I am bring home plenty of fliers to try to sort out a few things. I have ordered some things such as a bath and shower. Many people here don't have a bath but there are times when I enjoy one.

I got George some handles to use in the shower. These are held on by suction and are really fantastic. Another carer told me about them and I was skeptical but put two up in the shower and then held on with all my weight and they supported me, no trouble. They are really great. In fact the builder I have was suitably impressed and also wants some!

Doing his own thing

George has always lived his life to the beat of his own drum. He has always been very slow doing things, he has been rarely on time for anything and he refuses to be hurried. Several decades ago I worked out strategies to get around these idiosyncrasies. I always told him that we had to somewhere at an earlier time than we needed to be somewhere. I NEVER tried to to get him to be quicker - if I did he went slower...

His son always said the only times he was on time was for planes and trains because they won't wait.

He is now training the people in the home. Certainly it is in different ways but he gets up when he wants to get up not at a time that is convenient for anyone else. If the caregiver tries to get him to be quicker while he is having his shower he goes slower and will complain that this or that is sore. 

Yesterday, after they had tried to hurry him he just moved slower and slower with difficulty. They took him to the lounge in a wheelchair - who won that round. I arrived not long afterwards and his mobility was fine! 

One way or another he still goes to the beat of his own drum.

Sometimes you have to laugh

I have been going to a group for people who have just put someone into care in a home. I have met some of these people previously at other courses.

Today was the last day of this course but we are going to meet together as it is really good to talk to people who are walking in similar shoes, others may think they know what it is like but the reality is that they don't.

One of the women, Jane, has put her husband into a home. He loves it and thinks it is a hotel. That is lovely but the downside of this is he regularly accuses her (in front of everyone) of running a brothel so she can pay for the 'hotel'. As I said to her today, maybe I need to work for her to help pay for George's care. 

It is good to be able to laugh at things.

Out we go

George was not dressed when I got to his home today. The carer gave him a shower while I had a coffee and did the sudoku in the morning paper. I must say the carers are very efficient. One of the carers had broken his brush. Another carer has lost the blades out of his electric razor (these are very expensive). I must say that many of the carers just put the broken things away and do not mention when they are broken, very annoying.

As soon as George was ready we got ready and left. I made arrangements for his lunch to be held for him.

George asked how I knew how to open the main door. I told him I was magic! He liked that. He was able to open the car door and get into the car without any help. As we were going down the road the first thing he did was open the jar of peppermints to get a couple. I have always kept a jar in the car for George and Mum and it has always been the first thing they do when they get into the car.

We went to a local mall where he had a milkshake and a bowl of chips. He throughly enjoyed them. I asked if he enjoyed going out.

'It's spooky' was the reply.

Despite further questioning I am not too sure what he meant.

I bought a new hair brush for him while we were there.

When we got back I settled him for lunch.

He had a lovely time but I expect he was pretty tired after his outing.

Going out helps to give a quality of life.

Sweet tooth

Something I have found with both Mum and George is that developed a sweet tooth. Mum always enjoyed a wide variety of foods while George always preferred savoury foods. After developing Alzheimer's both developed a real sweet tooth.

I was reminded of this yesterday when another wife visited her husband. She promised to take him out for an ice cream on Wednesday, he just loves going out for that ice cream.

I always have chocolate with me. Mum and George both love sucking on chocolate. Don't know how many cakes of chocolate I go through but it is a fair few.

I have always ensured that they have plenty of fizzy drinks such as lemonade and ginger beer. In addition to the juice the home gives them this keeps the fluid intake up. Both have been prone to urinary tract infections so this is important.

While Mum was borderline diabetic frankly I didn't take much notice of that. She loved going out for coffee and pavlova.

Quality of life...

Seeing the dementia person as a 'real' person

Today George and I read one of his books and talked about all the memories this brought back.

I scanned many photos which I have used to publish books for both Mum and George. The first book I published was for Mum. I didn't put in that book who all the different people were so really I was the only person who could use that book with her. One of my nieces wanted that book. I made both Mum and George large 100 page books. Before putting the pictures into the book I put the photo into PowerPoint then used text boxes to put on each name, I then grouped everything and saved it as one picture to put in the book. This meant that they could read the names themselves or others could point out who the people were. When I put the pictures into the book I would often also add a caption. These published books are high quality and there are many companies on the web where you can go to make these books.

This photo shows Mum's grandparents, her mother (Rose) and her uncles and aunts. 

I have found too that staff in the homes love these books. Seeing these makes staff (according to the research) view the residents differently. Another thing that helps this process is telling staff small anecdotes about your loved one's life. The research points to these residents being treated better.

Ups and downs

i find that George is constantly up and down. On Tuesday and Wednesday this week he was so lucid and then the last two days very confused and sleepy. I am really reticent to take him out at the moment as he is so slow and frail when walking. I am wondering whether just to take him for a drive to feed the ducks when he doesn't need to get out of the car.

Today I bought a big Boston bun and a pineapple sponge car for them all to have for afternoon tea.

As I have told the nurse there 'quality is more important than quantity'. I just want George to have the best quality of life that is possible. I also felt the same for Mum as was known in her Home and I also did the best I could to ensure this happened.

A gentle day

We are having the most wonderful weather, very mild even though we have just passed the shortest day of the year. The ski fields haven't been able to open, lack of snow. I am not moaning.

I have been enjoying sunrises and sunsets up at the old house. I have missed these so much. I enjoy watching them and thinking of my loved ones.

George's name tags arrived on Monday (I couldn't find the other ones - packed away) so I have been getting stuff named for George. As with Mum I take in body wash for him. People in homes seem to go through it very quickly. I seem to need to get a new bottle every week and I get very large bottles.

Same as with Mum I am taking over bottles of drink so he gets plenty of fluid. Mum loved raspberry, lemonade, ginger ale, lemon and padrona, and tonic. George has the same tastes. George and Mum got on really well so it was nice for both of them. It is so nice for in laws to be as close as George was with my parents.

George was pretty lucid today which was great. We had a great talk about some of his friends and the things they did. He is currently on a course of antibiotics as he had a urinary infection, this causes people with Alzheimer's to become very confused.

I am gradually getting some things sorted and made a trip to the dump today, every little helps.

Settling in

George is settling well into the home. He is very much up and down. On Sunday he was really down. His mouth was slack and he was asleep most of the day. As he has vascular dementia as well when he is like this I wonder if it is a mini stroke. Then the next day he was a lot better and very with it. He improved even more and now he is walking better as well as being far more aware of what is going on. I have spoken to staff and have taken some red wine so he can have a glass when he goes to bed at night. He is thrilled about that.

Something I am noticing very much is that I am only now starting to grieve. When Dad died my focus was on keeping Mum going so she didn't feel alone. I know I succeeded as she told me. She then moved next door so I kept everything going on an even keel for her and George. Then I had Mum in the home, George as well as the earthquakes to deal with. Now for the first time I need to look after me. I guess it is the first time I have had the time to grieve. It is so much to grieve for - Mum, Dad, George as well as the earthquake losses. It can be quite overwhelming. I knew it would happen but I had thought I was handling things well.

It all happens at once

the last few weeks have been so busy, now I have time to catch up on a few things.

George stayed in the rest home after his respite care. He is well looked after there and is happy. When this happened his son, from Sydney, came over and the three of us spent three great days going out together. George just loved it and continued to talk about his visit for some time after the visit. He was a great help to me to sorting out some of George's papers for me. It is a visit George's son will also treasure.

I have been visiting most days. Sometimes it is only a short visit other days we go out for coffee and he enjoys a toasted sandwich. Some days he is very confused and has no idea who anyone is or what is going on, other days we look at his books and he talks a lot about things he did. He is getting very fragile and I am not sure how much longer I can take him out. We would be in a lot of trouble if he falls.

The flat is packed into boxes and is stored in our old house and garages. I have set up a bed sitting room in our old house. It is nice and warm which is important. Also I can check on the builders.

I allowed someone to live in the old house rent free for a year and I must say he was very reluctant to leave. Prior to that I allowed another couple to occupy it rent free for two years. Of course I had to pay rent and the property owners costs for the flat. That helped to pay Mum's fees in the home. I am now having to pay for George. Since the earthquakes I have been caught between rocks and hard places. Of course all of this has seriously eaten into my investments.

Online friends

When you in a situation like this online forums become most important.

On my birthday a lot of my old kids posted on my timeline. During the last five years it has been so nice to hear how much I meant to them. I have found that I do like to keep up with what people are doing it and this is a way I can do it.

I am aware that many people disclose far too much information in social media but this is where it can be a boon to some.

I do think that it is important that children are taught early on about how to use social media and about internet safety.

You are still IT

Even when your loved one is in a home you are still IT.

Today the nurse at the home rang the doctor's surgery who then rang me. Upshot is I have to take him to the doctor's tomorrow. Of course that will write off the afternoon. George is still going to our doctor.

In the home Mum was going to the doctor associated with the home. Quite a few times I was asked to go in to see the doctor with Mum. You always need to be available for their needs it is not a case of putting them into care and then just going in once a week or once a fortnight. You frequently get calls regarding all sorts of things relating to them and that was even with me in and out of Mum's home like a jack in the box.

Lunch

Took George out for lunch yesterday. We met some friends there. He knew who they were although not their names. He asked me what my christian name was as we walked across the road. He knows who I am but not necessarily my name. He rarely used my name and always had pet names for me. He rarely remembers names now although he recognises people.

When I arrived at the home the staff were just getting his things back in the drawers. He is regularly taking everything out and taking them all over the place. In there, there are not the number of clothes I deal with here on a daily basis.

He told our friends about going walkabout. He does remember that little episode but is not at all worried about it but sees it as an adventure. This time he said he was going to see the editor of the Press.

When George wants to go he starts to get restless. That is when I took him and we went back to the home. No problems, no talk of home etc.

He enjoyed going out.

Happy birthday to me

today was my birthday. Got a phone call early this morning from the boys in Auckland so that was a lovely way to wake up.

I had organised for two guys to help me getting some of our stuff up to the old house. This is giving me some space ready for the next lot of packing. It is taking a long time but I am gradually making headway. When we had finished I took the boys to a cafe for lunch which was nice.

Came home to a phone call from my sister in Brisbane so that was also nice to hear from her.

I then went over to the home to see George. I was going to take him out for coffee but when I saw him I realised it may be unsettling for him. We sat and chatted. I told him it was my birthday. He wished me a happy birthday and then undid the buttons down the front of his shirt. He reached inside his shirt and pulled out a folded advertising booklet which he gave me for my birthday. He was so thrilled with himself that he had that for me. I thanked him and we looked through the booklet together.

I asked him if he would like to go out for lunch tomorrow. He thought that was a great idea and I said we would go to Honeys. He was so excited and said, 'the Honeys'. I told him that yes it was. He told me about some new friends there. He seemed pretty happy and settled which is a great relief to me. Before he came in to the home I had explained carefully what I would be doing and how he would be coming home, this seems to be helpful to him.

I then popped in to the local mall on the way home and bought myself a caramel sundae for my birthday - I rarely have these so it was special.

All in all a pretty productive day.

Delusions

For some time now George has had some delusions. One I watched him use a knife a fork to eat a meal when there was nothing there.

He will tell me some one is at the door or somewhere else when no one is there. I just go and look with him and then say no one is there or something like that. I never argue with him. I have said that they must have gone or something similar.

This morning I went to visit him at the home. He was standing at the door of his room and told me that the man in there was dead. I poked my head in and told George he had gone. I then took him down to the lounge and chatted to him. He settled quickly and I left him with DVDs for them all to watch.

With the delusions I never correct him or tell him he is wrong or that no one is there. I simply reply as though what he has said is correct. That seems to work for him.

Missing

George got up in the middle of the night. I suggested that it was night time and to go back to bed. He was reluctant so I said I was and to go back to bed when he was ready. Usually this works. He hates being cold and likes to stay warm in bed. George never goes off our property on his own. Occasionally he will wander down to the old house or down to the letterbox but it is very rare and I always know as usually I have suggested it. He NEVER wanders off on his own, famous last words! 😢

Last night at some stage however he decided to go to see someone he worked with! He set off with only his onesie on and no walking stick.
🚶🏻
I woke up early, pitch black! It was before 5 a.m. No George. I searched all over the property inside and out. No George. I searched all over our old property, no George. I knew he wouldn't have gone to the beach as the track is too difficult for him now.

I walked to the two streets in each direction straight outside our place. No George!

I rang the police. This is where it is really hard being so totally on my own.

The police researched all the areas I had been. No George.

My front neighbours were up by then getting ready for work. They also helped in the search.

Finally he was found some considerable distance away down the road. They brought him home. I gave him some breakfast and chatted to him.

He said he was off to see someone he worked with and had some pages from a photograph album with him. At one point he knocked on somebody's window, luckily not waking them. He knew he was lost. Someone tied his shoe laces for him! Unfortunately he couldn't tell them where he lived. He did not have his identity bracelet on which has his name and phone number.

Thank God he didn't fall. Some very scary hours!

Decisions, decisions, decisions

I have been patiently waiting for alterations and repairs to be done to the property we live in. We have been waiting for over five years. During this time George's Alzheimers has progressed a lot as can be expected.

Last year I realised that it means that George and I, along with all property, have to leave the property for at least six months. George has to go into a rest home due to his condition and his incontinence. We will be paying big time for this.

I have been very worried about how this will affect George's condition. I arranged so that when it happens George's routine will continue as much as possible.  This has been done with the expectation that I would be bringing him home.

However I now think that this is unrealistic.

I have recently been told that his disease has progressed to a point where he will no longer be able to attend his club.

George is going in to respite care so I can do some packing, it is impossible with him around!


For the last two weeks his regular caregiver has been on leave so he has been having a lot of relievers. While some are good others are not. As a consequence it has been a difficult two weeks for me and George has been extremely confused. It is in the lap of the God's as to whether George will be able to come home after the six months. Increasingly it is looking less and less likely.

Relieving caregivers

My regular caregiver is away at present. The relieving ones are of varying expertise. The agency gives them no knowledge about George and his needs.

I decided to write the instructions on a sheet which is then laminated.

I am finding this is a great idea and the carers appreciate it.

Unfortunately George is continuing the downward spiral. 

If the repairs had been able to be done a year ago when I was ready it would be different but unfortunately I cannot see him going into a home for 6 months and being able to come out. So sad....

Road works

Our earthquakes started over five and a half years ago. Our roads have not improved much since then. It is still a nightmare trying to find your way around. Often you find that you get to road you want to go down and blow me it is closed... You follow the signs for the detour and often find yourself in an unfamiliar place. Great.

There is also a lot of associated dust with all of this, no wonder there are a lot of people here with respiratory problems, including me. Since the earthquakes I have developed asthma and have breathing difficulties. As the doctor said a certain amount is also caused by stress - something all caregivers face continuously.

The parts they haven't started to repair still need to be treated with care as you tend to go up and down as you travel along. Rather like being on a Rocking Horse.

At the moment I am also trying to pack stuff here ready to move out and finally get our place renovated and repaired. A very costly exercise although the insurance will pay some of it.

It does create problems when I am trying to get George somewhere. I try to leave a good 15 to 30 minutes earlier to allow for the unknown. However I am also reliant on the caregivers being punctual which doesn't always happen. Again I have to cross my fingers and toes and pray.

My heart goes out to the people in Japan.

Caregivers support group

I have been going to a caregivers support group once a month. I find it fascinating at how different how different each person with Alzheimer's is as the disease progresses.

Some with early onset Alzheimer's still have young children living in the home. This creates a lot of problems and the caregiver can feel very pulled in who needs their support at any given time. Children also need to be children and do things other kids do. Several caregivers of those caring for someone with early onset report how they are often hit and yelled at. They discuss very aggressive behaviours and yet when in respite care they are still at rest home level. I listen and think how lucky I am that neither John nor Mum have been aggressive.

Some find that the person with Alzheimer's does not want other family members visiting. This effectively cuts support for the carer, a real worry as people can become more and more isolated.

I am always impressed at how well carers cope and adapt to changing situations. It is often overlooked by others. If you know someone who is a carer don't criticize or offer 'helpful' advice. If you can support them by staying over for a night or two while the carer goes away. Take over a prepared meal, or take the person with Alzheimer's for the day ( or an afternoon ). Try to be on the same page as them - don't give them more stress, they have enough to cope with.

The big thing for carers is to make sure they look after themselves too.

Research

It is great to know that people are researching Alzheimer's disease all the time (so far without a lot of success).

Here in New Zealand a blood test is being developed that will allow people to find out whether they are likely to get Alzheimer's in the future. This is from The Press (in Christchurch) on April 7 2016.

 

They point out the pros and cons that will arise with this knowledge. An interesting dilemma.

 

Frankly I am not sure how I would react but I know I don't want to go through what George is going through and what my mother went through. However during this time there may also be breakthroughs in slowing down the disease.

The toys

Another story I read, as a child, was how toys came alive when everyone was asleep.

I often think George must have read this story and decided to act it out at night. Maybe thinking he is a toy.

I often find clothes and shoes in the bed when I go to make it in the morning.

George mucks around in bed. This morning I found he had pulled the catheter bag off his leg and then the bag had come separated from the catheter.

Result: a wet bed.

I usually have a stocking over it to try to keep it in place. Unfortunately some caregivers forget to put it back on and this was the result. Sheets get changed here very regularly.

Frail

George is becoming more and more frail. His legs are very thin and do not look strong enough to hold him up.

On Friday we visited a friend and then went into town to the library in there.

On the way out of the library we went to the car and I turned around. George's legs buckled beneath him and he went down. Luckily it wasn't a fall but just went down. He was not hurt although he got a shock, as I did. A lovely man rushed over and the two of us got him up and into the car. On returning home George had a long sleep and felt much better when he woke up.

When he is going a distance he uses a walker but for shorter distance he uses a walking stick. The walker will need to be used more and more.

Fairies and elves

When I was a child I heard a story about elves and a shoemaker. At night the elves came and worked to help the shoemaker and his wife.

I think elves and fairies are at our place. Shoes and socks go missing. It is hard to find two matching shoes or socks. I wake up in the morning and find drawers from the dressing table on the floor with stuff littered around. I find chairs dragged into the middle of the lounge. All sorts of strange things happen.

George swears black and blue that he knows nothing.

Must be the fairies and elves, just wish they would do the housework.

Confusion

I find that when George has been doing things out of routine especially when it is social things, he gets very confused the next day. Mum was the same. It does make things more difficult for me and other caregivers. George becomes very restless and has conversation becomes very disjointed and I have to continuously tell him that I am not sure what he is talking about.

This morning I have found I need to be in the same room or he comes to me ready to go out. This morning I have given him his cup to clean - that is keeping him busy for a while.

I never tell him we are seeing someone or are going somewhere at a future time otherwise I may find him sitting in the car ready to go out.

A busy social week for George

the day after his birthday George went to his club. They had a cake and sang Happy birthday to him. When they presented him with the cake he had tears in his eyes! He felt very special.

The next day we went to the Botanical Gardens to meet one of his old school friends. This friend was visiting from Perth, although he has lived there since the 1970s New Zealand is still where his roots are and he comes back every year and travels around and catches up with old friends, really nice. He also taught me at high school. We had coffee and something to eat. As George prefers to speak to one person on his own I went for a wander around the Gardens some of the time.

The following day George went to his club again. The have noticed how frail he is becoming and don't know how much longer he can keep going there which is another real worry for me.

Friday was Easter Friday. George had a quiet day which he needed. To keep him as contented and 'with it' as possible it is best to keep good routines and not get overtired which can happen very easily.

Yesterday was Saturday and George's youngest son was able to fly down in an airforce plane and arranged to meet George at a coffee shop for an hour before returning to Auckland.  George loved seeing him as it was two years since his last visit to see his Dad. The books I have made for him with photos helps him to remember people he doesn't see for a long time. It was the same with Mum. It is so important to see your family regularly as once they have gone you have lost your opportunity.

Today, Easter Sunday, George was delighted that the Easter Bunny had been and cheerfully ate a lot of chocolate.