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

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.

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.

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.

Forgiven

Fluffy Bum has forgiven me and sat with me on the sofa last night.

Got an email from a neighbour yesterday to see if George and I wanted to go to coffee so we met up today and had a pleasant time sitting in the sun and chatting.

I have been putting on the World Cup Rugby for George but he is not able to follow a game any more. He is better just talking about it and maybe watching a few highlights. As this was his passion and he had a fantastic memory about the games and players it is so sad to see this sort of thing happening.

George had a lovely day and is still quite 'with it' and able to carry out a conversation at the moment.

The best laid plans

They say 'the best laid plans of mice and men...'

My cat, Fluffy Bum (named after the cat in the book Badjelly the witch) needed to go to the vet this morning as she has started to limp. As George's caregiver comes at 10 a.m. on Saturday morning I arranged the vet appointment for 11.15 a.m. so he could come too (he loves going out). The caregiver arrived half an hour late. He tried to get him done in half an hour but was unable to. I got the cat and put her in the cat box, wall to wall moaning!! All the way there it went on and on. I then had to keep her calm when she came out of the box!! She has an infection in her paw!! Paid the exuberant bill and then the wall to wall moaning all the way home. As soon as she got home she was in a bad mood, out of the box and outside until I had put the cat box away and boy did I get some bad looks.

George was unhappy not to go out so off we went and had a coffee - he, as usual also had a bacon and egg toasted sandwich and finally came home. George takes a long time to eat his food. That was pretty much most of the day wasted. People wonder why but it is due to things never going according to plan and EVERY day is different!

A good day and night

Wow, we had a great day and night. I took George out for about 4 hours yesterday and also out to feed a neighbour's cat. One of the things we did while we were out was to put freesias on my mum's grave. These were a favourite flower of hers. We went near my childhood home and fed the ducks. A little girl came along and shared the bread to feed the ducks. I can't say the weather was good but it wasn't raining. I must have tired him out and he did not wake during the night - a first for a very long time. He woke this morning 'full of fluffy ducks' and seems happy and relaxed (fingers crossed).

It takes a lot of time to do this sort of thing but I guess it is worth it. Not a lot done at home!!

Going round in circles

Sometimes George wakes before me, like this morning. He had pulled all the clothes out of the wardrobe and there were piles in every room of the flat. Guess who had to put them away. He actually has no idea why he does some of these things and often doesn't think he has. When this sort of thing happens (and it does frequently) you are better just to say nothing and clean up after them. You often get the feeling that you are going round in circles.

This morning he was very restless (sundowning in the morning!). So after a shower and a nurse changing his catheter bag I took him out to a shopping mall. It is bitterly cold outside so thought that this would be a good option. We then walked from one end of the mall to the other - good exercise. By then he started to say he was tired. We had a cold drink and then walked back to the other end where I got him a cream freeze ice cream. He enjoyed all that and he seems more settled now.

At the moment our regular caregiver is on annual leave so we are having all sorts coming. Each one you need to explain exactly what to do, have everything ready for them and be on hand to help them. George finds it difficult to cope with a pile of different people in and out.

Luckily this all ends next week.

Not an easy day

Something I find interesting is that each of the people with Alzheimer's display a different sign which shows that they will be more confused than usual. With George it is his bottom lip goes slack. Other people who are not as intimately involved probably will not even notice these signs.

Yesterday it was a bottom lip day. After rushing round taking George to 3 different places associated with helping him I had not had much time at home the day before to do the things that needed to be done here. Unfortunately most of it did not happen yesterday either. When George is like this it is easier to do little bits and then attend to his needs. His language was really bad and he had a lot of difficulty getting his needs articulated. One of the things he wanted was for me to take him to the bank to get money. Mum was always obsessed with money too. I can assure you a lot of money goes missing when they have it....

George is like a prisoner and gets 'stir crazy' if he doesn't go out each day. As I needed a couple of things from the dairy we went out. He wanted to go to Brighton so I took him there. There are not a lot of shops for him there but I took him to a 'That's incredible' shop where he decided he wanted a dress up policeman's hat. He loves it so he added that to his collection of hats...

Problem solved

Realised last night that I forgot to go to Nurse Maud to pick up George's diapers so I will need to fit that in today. I also have to take George to see a friend this morning and then to an Alzheimer's coffe this afternoon. I need to stay with him at these things so that is today written off. This is something that caregivers find; most of their time will be taken up with doing things for and with the person. It is really important to keep routines going which gives the person with Alzheimer's a sense of security.

Since putting the onesie on back the front we have luckily had no more problems at night this week ( thank God ). Problem solved.

Our whole country almost came to a standstill over cricket this week. It is great for everyone to get behind these teams. Although George was highly involved in sports all his life he has now lost interest but enjoys reliving games played years ago.

A messy day

Yesterday started with the caregiver coming at 10.45 instead of 9.00. By the time he had George showered and dressed it was nearly lunch time. Then a nurse came to check on the catheter. All is well there.

Finally I took him to Brighton for a coffee as I had promised (while we were waiting for the caregiver! - bribery). Obviously by then the better part of the day had gone. As I went to get a park I saw a tradesman walking back to his van. As he went past I asked him if he was going and he said he was. I thanked him and said I would back into the park. As he drove past me he stopped the van and leaned out of his window and asked if I was single. I shook my head but that was a nice little boost for the old self esteem.We did have a nice time sitting in the sun and having our coffees as well as George's pie.

Tonight he was looking through his memory book. Unfortunately he carefully cut through a page - he seemed to think a photo of my sister was the same person as an old newspaper cutting he had.  I have carefully mended the book and suggested to him not to cut things out until we have talked about it. He has done this before. This is where it is often hard. There is no point in trying to fathom out why they do things  and also there is no point in arguing about it. Just play along with it....

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.

Son's visit

George's son arrived on Thursday night in the middle of a storm, poor buggar was soaking wet. George got a huge surprise and was really thrilled. I had some food ready for him which he was pleased about. The two of them have spent a lot of time chatting about old times which is great. It has been lovely for me to have him here too and have someone to relax with and chat to. We have been having some really good chats and enjoying each other's company.

We have been to Sumner, Lyttelton and the new cathedral. I love the cathedral and it moves me each time I go in it. George's son felt the same.

Today they have gone to Akaroa for the day which is lovely as it gives me some me time - just had a spa and will have a soak in the bath. I have a red wine stew in the slow cooker for tea when they get in.

Had some toilet issues last night and luckily was changing the sheets today instead of yesterday (which I normally do). The continence pants saved to some extent but certainly not all.

Yesterday at Mum's home, they told me that she no longer displays Alzheimer's behaviours and should be in a general hospital level of care. I told them I did not agree and gave a lot of reasons why. To move her and the people she knows is just plain cruel.

Life goes on

I haven't posted for a while due to many things happening.

George is sitting reading the paper. I told him this morning that the paper was there at the gate. He got his walking stick and walked outside and then came back. I thought that he had forgotten what he was doing but no

he had forgotten to wear a hat!! He wears a hat ALL the time except when he is asleep - he is the same with gloves. We will be going out and I will have him in the car and then he will get out to go and get his gloves. Unfortunately he is unable to keep any one pair together and so I find them all over the place. For times when I am in a great hurry I keep a pair in the garage!!

Yesterday was one of the days I go to visit my mother. Before I leave I like to get the washing done and out, including changing the bed. Yesterday George slept in so as soon as he got up I stripped the bed to get the linen in the wash (earlier I had done another load of washing - as I do most days). I had already got George's breakfast and pills out ready for him. He came out wearing; one pyjama top, two T shirts, two shirts, one pair of undies, one pair of pyjama pants, two pairs of trousers....

Learn patience when caregiving anyone with this disease.

Walking stick left behind

Today I went to see mum and she was sound asleep. She had the caregivers trying to get some yoghurt into her for her breakfast. They spent a lot of time and trouble and were certainly not shovelling food into her but it was extremely hard going. I find it quite distressing to see her like this - which is becoming more the norm. I do realise that when another one of the people we have going to see Mum is not able to I do not need to go but it worries me in case it is one of the days when she is awake. These are the days when she really wants and needs the one on one attention

I also realise that this is what will happen to George. I find things extremely confronting and for me it is constant.

When I got home I found George had gone to Brighton and had a coffee and then went to get himself some wine (2 casks) and returned home without his walking stick (once again). I then had to go and retrace his steps and luckily found it. I know that these things do not sound like much but they take a lot of time.

Frustrating

It can get rather frustrating dealing with someone with Alzheimer's. They do what they want, when they want and how they want. We were going out to see friends this morning. George's caregiver had him ready (apart from hair and shoes) before 10. It then took him nearly and hour to get ready so by the time we got there it was nearly lunch time. It is really frustrating when you want to get on with more housework or gardening or whatever. He will not be hurried. He wanted to go but only gets himself ready in his own time. They do not see things from other's points of view nor do they understand what others have to do for them as they just sit and accept that they will be looked after.

George is very slow to figure out what he wants to say and so you need to listen very carefully and fill in the words that he can't find. Mum was the same and they get uptight when you don't get the word for them.

I have heard people say that it is like looking after a small child again but this is totally incorrect and shows someone who has not dealt with these people on an intimate basis for any length of time. You cannot train someone with Alzheimer's to do things i.e. put things away after themselves as they have no idea how to do it. With a child they are learning, with these adults they are losing their memories slowly but surely and along with this comes the knowledge of how to do simple everyday tasks.

Happy New Year to everyone.

Going going gone...

Something that is really difficult and time consuming to deal with is things going missing.

Yesterday George caught the bus home from Brighton. I was not there when he got home. The next day he needed his stick. I spent ages looking for it. Nowhere to be found. I have rung the bus company but no luck. He later showed me a parcel that he had bought. This happened while I was getting tea. I told him to put it into the bedroom. This afternoon he wanted it. Again I have spent a long time looking for it with no luck.

While I was looking I found two pairs of pyjama pants stuffed up into the top of the wardrobe, I had been looking for these s I guess that is something.

Made it

I did make it to the prison in time and so have been inducted to be a volunteer out there which was a relief.

George went to Brighton on his own yesterday and safely got there and back using the right bus stops so that was a relief too. He likes to be able to do this and I don't want to have to stop him just yet.

Today at his club I found out that another man he has made a close friend of has now gone into permanent care which George will find sad. I am not telling him as the two of them have been gravitating to each other for some time and look for each other. His wife is applying for a Government subsidy but if she does not qualify for it she will need to bring him home. They set up family trusts some years ago and she is hoping that she has it right. I will be interested in how she gets on. We will never qualify which is a worry as the partner still has to live and pay their own bills. What you are left with is very little. You can have:

a house
a car
up to 115000 in investments or in the bank

Not a lot when you consider that as well as the fees for the home there are a lot of extras that they need. It costs me quite a lot each month for mum. In addition you have the running of your own home and car as well as a standard of living. On this there is not a lot for any luxuries and certainly travel would be out of the agenda.

Of course this is what a couple can have left. For a single person it is minus the house and car. We are very lucky that Mum was living in her flat as had she still been in her original home everything would have had to be sold and then the money used for her care which of course would mean that the capital would rapidly deplete.

Time for me

I do try to have time for things I would like to do but it is easy to say but the reality is a bit different. Other people have very interesting ideas about how I can manage juggling all this. For example I have volunteered to go to the prison to teach reading. (It is something I believe in doing and I think that everyone who is able to should give back something to the community through voluntary work.)

The induction is this week and they will not let you in if you are late. There is no flexibility for the day or the time.  I will be cutting it very fine as I also have to work around the caregiver and then drop George at his club before setting out for the prison... If I don't get there in time I will have to withdraw as this is the only time that they run these sessions. This is the sort of thing that happens that makes me very aware of how alone I am and how everyone else's needs come first. Unfortunately all our friends work and I no longer have any family here so I do not have anyone to call on to help.

Today I went tot the home to spend time with mum. I dropped George in Brighton so he go for a coffee and morning tea. He caught up bus home but got lost in Rocking Horse Road. Luckily someone I knew saw him and brought him home. I am going to have to try to stop him going on the bus. It looks like I may not be able to leave him on his own at all.

What an odd disease

What an odd disease this is. George has no idea of time at all. His caregiver took him out for coffee and he returned home at around 3 p.m. I was working on the computer while he was watching TV. Next thing a neighbour came in to tell me that George was at the bus stop! I raced down there and brought him home. He was off to the bank (it was about 5 p.m.). I explained to him that it was too late in the day and the bank would be closed, I don't think he could work that out.

George is still able to hold a good conversation and knows everyone and also about what is happening in the world. His short term memory is also good so he is high functioning here although he can no longer write very well at all. He also struggles and is unable to cope with envelopes.

Last night he used a sponge bag (in the bathroom) to go to the toilet in...

I do find it gets very demanding on my time. He also uses a different glass all the time and often has 3 or 4 glasses lined up on the coffee table. I have to search around to find all the glasses and coffee cups. He tends to pull things out and never puts things away but leaves piles of things all over the house.