Sleepy

Today the carers have continued to have problems getting George out of bed however the managed it. He is drinking well but not eating much.

Sometimes I think it is like the seven dwarfs and I never know which one it will be. Today it was Sleepy.

When I arrived George was asleep in an armchair in his room. He was curled over and sound asleep. It took some time to wake him up. Throughout the time I was there he would wake for a short while and then go straight back to sleep. I always chatter about the family and friends. I asked him who I was. He knew I am his wife but I don't think he knew my name. As I chat about people I ask him who they are. Most of the time he is back asleep. Today I was chatting to him about Mark. I asked who Mark is. 'He's my eldest son' said George. Although fleeting a very lucid moment.

I think it is so important to try to keep these memories alive through video, photos and stories.

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. 

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.

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.

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.

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.

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.

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....

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.

How the day changes

this weekend our regular caregiver was away. This can make a huge difference depending on who you get.

George came wandering out on Sunday morning with no clothes on and dragging an empty catheter bag along the floor. He had taken it off his leg.

I had to clean him up. Then I had to change the catheter bag. I dressed him in some pyjamas and gave him something to eat and drink. Then I had to start on the cleaning out. Unfortunately George had gone back to bed leaving it soiled and wet. As well as clothes I had sheets, a big blanket and a comforter to wash. Two of those items I had to wash in the bath as they are big and bulky. The floor in the hall and the bedroom was wet so I had to steam clean all of this.

George was waiting for a temporary caregiver to arrive. I kept giving him books to read and giving him more food and drink. Finally at 11.30 I got a ring to say that the caregiver would not be coming as she had had an accident. I then needed to shower and dress him as well. This takes a good hour.

Basically that took me all day.

Yesterday (Monday) morning I went to get George out of bed only to find he had rolled out of bed only to find he had rolled out of bed and was lying on the floor. It took me a good half hour to get him up. I got him to roll onto his front and then get into a crawling position. Then, with the use of a chair and me with my arm under one of his arms we managed to get him up.

It is things like this which continually makes you have to change any plans you may have. You just have to learn to go with the flow. Don't stress and learn what is most important.

Tips and tricksI

George did bounce yesterday and had a good day. A good sleep obviously helped.

Some of the things I have to help me cope with various things

• I keep a jar of peppermints in the car, as soon as he gets in the car George gets himself one
• As he is incontinent he wears incontinence pull-up underwear. He started to take them off in the middle of the night resulting in dreadful messes. Now he wears a onesie to bed. We put it on with the opening down the back so he is unable to take it off. I have tried the normal way but he still took it off. It was trial and error before we worked out this way.
• Because caregivers vary in their ability I have found it easiest to have a big bag prepared for each morning. In this is everything that they need to dress George. By everything I mean everything. It is worth taking the time to do this.
• Keep everything going in a routine as much as possible.
• Try to keep them as independent as possible. I also make sure that the caregivers do this as well. If you don't do it you use it.
• Treat them as an adult and with respect. I have heard people say it is like dealing with a kid and also speaking to them in this way. Both George and Mum pick up on this very quickly and get upset about it.
• Never argue or try to reason with them. I agree with everything.
• Learn patience, you will need it
• Rummage bag - I have a bag with photos and stuff George likes to look at. I often give it to him when he is waiting for a caregiver
• Be very aware of your voice tone. George gets upset if I use a tone that he perceives as annoyed. He tries very hard to do the right thing. I try to keep my tone light and happy even when I don't feel like it. It certainly makes it easier.
• I make sure I have some me time, I regularly meet friends for coffee. This is very necessary otherwise you can become very isolated.
• George enjoys red wine. His caregivers come pretty early to get him ready for the night. As soon as he is in bed I take him a red wine and put on one of his favourite movies. He loves it and enjoys going to bed. He tends to roll over and sleep before the movie ends. I keep the remote so I can turn it off from the door and turn the light off. 
• Attend carer support groups, you will pick up ideas from others. Some will work in your situation while others don't. Usually it is worth trying.
• Remember quality of life for everyone is the main priority.

Social isolation

In today's paper an article about elderly people being socially isolated.

This is so sad and I am sure is because of families leaving their home towns and making lives in other places.

This did not happen in earlier times (and still does not in some families) and the families would gather round and share looking after their elderly family members.

Today many families do not worry too much about the elderly members of their families. Often the elderly are put into rest homes where they spend all day in their room. Once in a rest home many family members feel that they are OK there and don't make the effort to go and visit very often.

Going in to visit and take the time to talk and have a special time with your family member/friend is so important to them, don't just think that they are OK.

Often when a family is living in all different places, or for other reasons,  there is one member of the family who does most of the caring for the person. If you are a member of a family where this is occurring and you are not the primary caregiver don't forget to acknowledge this and don't forget that it is often costing a lot of money to give your loved one the quality of life you would want for them. Do you envisage reimbursing some of this to the caregiver or do you just expect that that is what they should do? Just remember too that this caregiver can also become quite isolated due to their commitment - acknowledge and thank them appropriately - don't be half hearted about it, remember how much they are taking off your shoulders. Criticizing whatever they are doing does not help them. Just a few thoughts.

Yesterday I saw that the caregivers have not been doing a good job with his shaving. I made an appointment for him at a groom room. While we were waiting I watched as they gave two guys hair cuts. As part of the treatment they had scalp massages and then a shoulder/neck massage to finish - talk about pampering. He had a razor cut but was very tense throughout. The woman who did it was very good. I have booked him in for a hair cut in a couple of weeks. The price is about the same as his regular barber and so much nicer.

Got home to a massive flood! The dishwasher had started up all n its own and flooded the place. It took me ages to find the plug and turn it off. Got it off thank goodness and got someone in to look at it. They have taken it away to try to repair it - fingers crossed.

Let me tell you it is no fun trying to clean up with George making demands all the time.

I bought a new magazine today - guess what? It has mysteriously vanished into thin air. I suspect it is now cut up and I didn't see any of it...

Making sense of dementia

I remember when Mum was first diagnosed with Alzheimer's. I really did not envision our lives changing much (famous last words). I knew that she needed me to move in and live with her and she also had carers to shower and dress her. However I thought that Mum, George and I would do a big road trip for about 3 months around both islands of New Zealand; didn't happen unfortunately. Everything went downhill "at the rate of knots".

I found that even medical people were not able to tell me that much and I got very confused as some people referred to dementia and others to Alzheimer's. I kept asking what the difference was. A few weren't sure, some said that they meant the same thing and others didn't know.

I read widely about Alzheimer's and figured out:

Thinking of dementia as the universal set, Alzheimer's is one of the subsets. I made this diagram to show some of the forms of dementia (not all). People often have more than one form of dementia, for example George has three different forms.

The reason why people do not answer with a straightforward answer is because there is not one. Everyone is different and their journey with dementia is unique to them.

For carers knowledge is power. You are the only ones who really knows what it is like caring for these people, others may tell you but the reality is that they go home at night and have a social life while you do not.

A lot of what I found, initially, did not make a lot of sense to me as both Mum and George did not fit into the stuff I was reading. Just take the  bits that fit your situation and discard the rest.

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!

Spring

Spring is such a wonderful time of the year. The monarch butterflies are in the garden and the Godwits have returned. All the flowers are out and looking so lovely. Sometimes I take George to the river to feed the ducks. He enjoys that.

I do find myself rushing to get things ready for the caregivers - each one wants different things and they have their own way of doing things. One that is quite demanding is German lady in her fifties. She is one of those people who always knows better; if you say something she knows a better way of doing it for example, one of those Control Freaks - I actually find them difficult to deal with and I know a few of them. She takes George out for a walk once a week and they go for a coffee. Each time he needs to be wearing particular shoes which she specified and I have to have the following ready:

• sunhat
• winter hat
• heavy jacket
• wind breaker
• light jacket
• water bottle
• gloves
• scarf
• library card (in case they go to the library)
• $10 for a coffee and something to eat
• A book which she writes in about their time together
• Walker - although George normally uses a walking stick she likes him to use the walker when they go out

They are truly set for any weather. 

George is quite 'with it' at the moment. It is times like this you need to enjoy as they happen less and less as time goes on.