Busy time

What week! Times like this become a blur. My sisters cleaned out my mother's room at the home. I was really pleases that they did this because, to be really honest, it was something I was not looking forward to. Because I was in there so much in seemed too final to me. My sisters took me in there after the people in the home had it ready for the next resident but it just felt really strange, I felt like an intruder. I guess because I was in there so much for so long. My sisters also organised the cremation which was important we do straight away and I admit I was feeling extremely shell shocked at the time and reluctant to make a mistake which I could easily have done. Luckily they got everything organised. They also went through her clothes which were still stored here at the flat. I hate going through someone else's things, it just seems so wrong so it was good that they did this.

 It was lovely for them to be able to stay together and do things together. This is what we were able to do when Dad died as we all stayed together with Mum. This is very important for families at this time as otherwise you can feel very much apart and on your own. It is a time for bonding and remembering  and of course honouring a life well lived.

We did not have a funeral but we had a celebration of her life. This was something that Mum believed in. She believed that we should celebrate a life well lived otherwise we negated all that the person stood for in life. To this end we held it in a cafe that we have taken her to for many years. It was lovely and we also were all able to toast her with a glass of champagne. She would have loved that. She wished for her ashes and my father's ashes to be interred in her mother's plot. My sisters organised for this to be done immediately after the celebration.

Rest in peace Mum

Mum

Mum died on Monday morning while my sister was with her. After my sisters arrived they came to the home and took over being with Mum. That was to ensure that she was not on her own at any time.

After four years is finally at peace. It is a time when I feel so relieved for her as well as an overwhelming sadness as she was 'me mum'.

In my family there are three girls. While my dad would have loved a son he got three great daughters and then three grandsons as well as three grand daughters. We were lucky as my parents did not have favourites. I remember asking mum about this and she told me that she loved each of her children equally although maybe differently as they each had different personalities. I remember when I became a mother a lot of things like this made sense and I understood what she meant.

Death is a time when people react differently. Some people feel that they are under pressure which is a very normal reaction but it is important not to take it out on other family members - work together; remember that this is a time to come together and work together. It should be a time for remembersnce to celebrate a life well lived, it is not about anyone else however it is always difficult as you are often unsure over whether what you are doing is the right thing, all you can do is your best, we all make mistakes.

Because of all that has been going on George's routines are way out. I have been dashing around with things relating to Mum and the rest of the time have been here on my own with him trying to maintain routines, not very successfully. My sisters are together in a motel which is near my mum's home. George has been getting very confused over this time so I have arranged to take him in for respite so that I can concentrate on mum and what she would want. I take him there this morning. My son arrives this afternoon and is staying with me so it will be so nice to have someone to talk to about things.

We are not having a funeral but we are having a celebration for her to celebrate a life well lived. We have invited people who were important to her. I am sure she will love this.

I think that what everyone has to do at anytime what their own conscience tells them is right. As mum would say to me, at the end of the day you are the one who has to live with what you do or don't do, no one else.

Poor Mum

It is heart-breaking to see your mother in this condition. Apparently people have been known to last for up to 2 weeks. It is hard on her and hard on you watching it.

My sisters are here and have taken over sitting with her all the time. I go in a couple of times a day to see her. I do not know what she is aware of but I am sure she knows we are there and she loves touch and reacts to the sound of our voice.

Death is a very difficult time for anyone and all each of us can do is what our own conscience is comfortable with. I have always gone with this. When my father died I knew it would be a difficult time for my mother so to be alone in the house so I decided that I would leave home every morning early enough to go to her on my way to work and have a cup of coffee with her to help her get through this. I know that I did not HAVE to but I would have found it difficult to live with myself if I didn't do it. I also felt that I would be letting Dad down. Mum did mention once that she had not felt alone because of this.

I took George in with me today and put him the lounge with a coffee. On the way out he wanted to know 'where the lady of the hour' was. I wonder if he thought it was her birthday, not sure on that one.

A difficult time

After I wrote my blog yesterday I took George to his memory group and arrived at Mum's home by 10 a.m. I took her in a milk shake as I thought I could feed her that with a spoon. Unfortunately she had suffered a major stroke and her left side was no longer working and she was not able to swallow. One of the staff had the milk shake. I sat and stroked her hands and face with lavender oil and a homeopathic remedy. I felt she knew I was there but that may have been wishful thinking.

I collected George at lunch time and took him home gave him lunch and settled him with a DVD, afternoon tea and photo albums. I let a neighbour know so she could look in on him. I rang my sisters in Australia and they organised flights to come straight over and a motel by Mum's home. I went back and sat with Mum for the afternoon. The doctor came in and said it was terminal and has given her drugs for pain and anxiety. Our main aim now is to keep her pain free and as comfortable as possible. Luckily she has a living will with her wishes in it so any sort of treatment now is out of the question. This is such a cruel end and certainly makes one query about euthanasia. No animal would be made to suffer in this condition. Unfortunately Mum's heart is strong and she is a fighter which is to her detriment just now.

Many of the caregivers in the home came in to give her a kiss or a cuddle which was lovely. They regard her as a member of their family.

I returned home to give George his tea, change and clean him and get him ready for bed. I put on a movie for him and hurried back to the home where I stayed until about 2 a.m. When the two sisters arrived. I came home but had difficulty sleeping.

We have agreed to ensure that Mum is not alone at all and are doing shifts. George is blissfully unaware of the reality of the situation although he knows what is going on. I have to ensure all his needs are met before I leave. Luckily he does not go away but I do know I will come home to an unholy mess. He pulls things down from the top of the wardrobe, moves all his shoes/slippers to the middle of the lounge, pulls out and cuts up pictures and photos for example. I guess it is a small price to pay. How lovely it would be to have others to help with some of this.

Learn new tricks

They say those with Alzheimer's don't learn new tricks. Well George did! At the meal table last night I got up to get something for him and then I see urine all over the dining room floor. Checked the valve on his catheter and the dear boy had opened it and emptied it all over the floor!

Very nice. I did not see him do it and nor did he know he had done it.

A bit more steam cleaning quickly done.

If this was a child you would explain the consequences of the action unfortunately that is rather a waste of time in this situation.

Just had a ring from my mother's home where she has been showing signs such as shallow breathing, high blood pressure, high blood sugar level. As Mum is generally pretty much the same this is unusual for her. They rang the doctor who is going round to see her today. This could be a stroke although at this stage they don't think so. I am just reorganising my day to get in there. Times like this become logistically difficult. I need to clone myself. At present they are keeping her comfortable and keeping her in bed. It is difficult because of course she can't tell them how she feels or anything.

Getting things back under control

Got the sheets and duvet cover washed and dried even though it was raining today ( good for the garden ). I used the technique to put the duvet cover back on and I must say that it worked well even though they had two people to do it - it still worked just with one. When I had finished it the duvet was the best I had ever achieved. Looked just like the bought job.

Last night the onesie was used again as well as safety pins in an attempt to ensure that he is unsble to take it off during the night. While George did get up a few times during the night the onesie remained on, let's hope we are back on track. Onesie stays on at night now no matter what the night is like.

Bring back the onesie

Just when you think you have got something organised - believe me you haven't. Usually George wears a onesie to bed as he can't get it off. For a long time now he hasn't tried to take it off and I have no longer had to use safety pins to stop him. It has been extremely hot here at night lately so I thought it would be safe to let him wear pyjamas. All has gone well for over a week. I was lolled in to false sense of security.

This morning George wanders out pulling the night bag ( very full ) with him. His pyjamas had been taken off as well as the pull-ups and both were by the night bag. Luckily I stopped him sitting down. He had soiled himself everywhere. I emptied the bag and started to clean him up when the caregiver arrived so straight into the shower for George while I continued cleaning. Went to the bedroom and found all the sheets and the duvet cover soiled. Got this off and put the first load of washing on. Serves me right for being too complacent.

I have trouble putting duvet covers on the duvet but luckily I have just downloaded a video showing how to do this so I will watch it again before I attempt this. It can be done by one person although easier with two.

Onesie tonight with safety pins!

Hide and seek

You know about the sox fairy who keeps taking one of every pair? We have these ones and currently are down to two pairs of matching sox. Well we have shoe fairies too - yesterday morning six single shoes. Still have not found all of them but found one wrapped in the sheets at the end of the bed. We have a shirt fairy and at the moment I am searching for three shirts that she has. There is no point in asking George as he has no idea that he has had any these things.

The only way I can be sure of knowing where something is, is to hide it ( and remember where I have put it). We do not have a lot of space for hiding and no area is considered off limits to George. It actually takes a lot of time to find the stuff especially if a caregiver is waiting for you to get it. This morning I had all George's clothes ready for the day. His caregiver then told me that I hadn't given him any sox. I knew I had but started looking for them in case they had gone walkabout. They had; onto George's feet.

Non verbal clues

George knows how to show exactly what he wants without saying a word.

Towards evening George often feels it is time for tea. He will go and sit at the table with an expectant look on his face. I admit it often makes me feel pressured.

At the weekend I had made arrangements to meet an old friend who I had not seen for twenty years. We arranged to meet in Brighton which is a pretty quiet place. The Main Street has a 'slow', one way street with judder bars going down. This makes it very safe. There is a park straight across the road and a crossing for us to walk across. George wanted to come so off we went. We sat outside in the sun which was lovely. George ate his cinnamon scone and drank his drink. He was obviously bored with our conversation which of course was a catch up. He quietly stood up with his walking stick and moved over to the crossing. He looked to see if there were any cars and sauntered across the road. He then stood by the car. It reminded me of kids getting fed up with a game and 'taking their bat and ball and going home' when they aren't winning. Naturally I had to leave. Both Mum and George want the attention centred around them and have trouble if it isn't. They need the attention and stimulation. Admittedly there are plenty of people without Alzheimer's who expect to be the centre of attention. It is something you get used to but can be irritating when you are trying to do something for yourself.

They are quite demanding of your time and energy without meaning to be.

Amazing Susan's web site

I have been going through Suan's web site as I can totally relate to her journey with her mother.


She writes in an extremely readable way and is very entertaining and presents the information in a light hearted way.

I certainly admire her at how she has accepted how things have turned out - I found it extremely difficult and just felt 'caught'. I figured I must have been extremely bad in a past life. I guess I still feel like that to a degree as really I don't know what sort of house I will rebuild and in fact whether I will rebuild as I know my life now can go on like this for a long time. There are a still a lot of things I want to and so at times just feel my life is 'on hold'. Reading Susan's web site makes me laugh and also makes me realise that I am not on my own and there are plenty of others out there in a similar situation.


My other blog


I need to start keeping this blog up to date!

Incontinence

Incontinence is not an easy thing to cope with in the home situation. It takes me approximately half an hour ( often more ) to get George ready for bed. I try to keep him as independent as possible and to do as much as possible himself. I will tell him to take off his shoes, one will come off. I then need to tell him to take off the next one. This is repeated for each article of clothing some of which he needs help with.

The catheter makes things easier in many ways: he no longer piddles all over the place, I no longer need to change the bed several times a week. It does have disadvantages too one of which is the possibility of infection. The catheter needs to be emptied regularly. The night bag needs to be attached each night and then removed and cleaned the next morning. I hold it under the laundry tap so the clean water can flow through and flush it out, this seems to work well.

Unfortunately George still wants to use the toilet to empty his bowel. He does try but unfortunately can't clean himself properly - have plenty of baby wipes on hand! another thing which is a real problem is that George somehow manages to get a lot on the floor, stand on it and traipse it over the floor! Carpet frankly, is not brilliant when dealing with this!

How anyone can think is similar to dealing with a baby I will never know. It is not. It has it's own set of problems which have to be worked around. It is different for everyone and all the carer can do is work out what works for them and keep their fingers and toes crossed.

You cannot rely on anyone else

Here in NZ some services are offered to help caregivers to manage to enable people to stay in their own homes as long as possible as this will be where they are happiest. Unfortunately things are not always as good as they sound.

George is incontinent and therefore needs at least one shower a day. He is certainly unable to clean his nether regions! Last night someone rang to let me know that no one could help me this weekend at all. Weekends have only recently been added as I was dealing with the weekends. This gives me more to do and I worry a lot about anything going wrong. At least they rang as I have had plenty of instances where I have been expecting someone , waited patiently, finally rung - you have to leave a message - and heard nothing. After at least twos hours you can safely assume they are not coming! Makes it very difficult to make appointments or plans to do anything.

Communication with the Alzheimer's person

I have noticed, and I know others have the same feeling, that many people talk about the person with Alzheimer's in front of them as though they weren't there. Many people are very condescending in their dealings with these people while others are embarrassed. People with Alzheimer's are quite capable of understanding many things even when in advanced stages of dementia and they need to be treated with dignity and respect. Many people lack the empathy to show any understanding.

A lack of empathy is a major component of the narcissistic personality disorder. While we have always had people like this in our community the number appears to be growing. As our population ages more people are being diagnosed with dementia. I have found that many people are scared of those with dementia and many lack empathy. We need to role model appropriate ways of dealing with things, animals and people for others and we also need to educate people on some of these things. We really don't need to have the 'Me' generation attitudes as being the norm.

When Mum first went into a home she got really upset at the way some of the caregivers treated her and/or spoke to her. She felt that she was being treated as a 'thick shit' and demanded that I inform some of these people that she did know what she was talking about - she obviously felt that they were behaving in a condescending way to her. I would do so. I notice that people do the same to George. I can quite see where these people are coming from as they see what is in front of them. They do not see the bright, articulate person this person was. I have made published books for both of them which show pictures of them during their life times. I have found that carers look at these and then look at the person in a new light. I find that many times I ensure that people have some understanding of Mum and George BA (before Alzheimer's). You often become defensive on their behalf rather like the mother of a special needs child.

Tolerance, empathy and understanding - all values we all need.

Here endeth the lesson....

Aggression

Yesterday I was talking to a woman who is a social worker with the Alzheimer's group. We were talking about those people with Alzheimer's who become very aggressive. Often these people have early onset Alzheimer's so they can be physically fit in other ways and be very strong. The combination of these factors make these people difficult for family and carers to cope. I have seen some of these people in Mum's home doped up to the eye balls. One woman who was like this now sits quietly without moving but the look on her face and in her eyes shows such suppressed anger, it is so hard to watch. I always have a chat to her as I have never seen anyone visit her. Recently she has given me a lovely smile and the change in the tortured look in her eyes to a calm look is lovely to see. While I realise it is necessary to dope these people up so they don't hurt themselves or others it just seems so wrong to see them like zombies. Unfortunately I don't know the answers.

What I have also seen happen is a home refusing to keep a resident because of aggression and so they are shifted to another home. Reminds me of schools expelling or excluding children. What is happening is that you are just sending a problem somewhere else for someone else to deal with. There must be a better way.

Medical profession

I have been thinking a lot lately about the knowledge and understanding of the medical profession with Alzheimer's. My mother was a very intelligent and articulate woman. About twelve years ago she started worrying about gaps in her memory as well as her perceptions of things. As she had done things like not knowing where she had left her keys we would laugh and remind her that she had done things like this all her life. Frankly I was not bothered and just thought it was part of normal old age however she went to the doctor who had her assessed at the hospital. They gave her things to do and talked to her and told her she was doing very well for a person her age, no brain scan was done. I thought no more of it but looking back she would have been in the early stages then. It is such a shame it was not picked up then when medication may have been beneficial. I feel quite guily that I did not take her concerns more seriously.

Later they used brain scans as well as verbal tests to diagnose Alzheimer's and other neurological diseases. Now, in and effort to save money the diagnosis has been passed to the GP. In my experience this is not going to help a lot as the majority of them are net well versed in this disease. Frequently I have  had to tell various doctors about things they don't appreciate about the well being of their patient. When I realised that George had it as well as Mum our own doctor was very reluctant to accept this and did not want him to be assessed. Luckily a locuum thought I was right and sent him for assessment. I fully realise that they cannot know it all and it is very difficult as these people all display different situations. It is so important that we have specialists who have a greater understanding to deal with this problem.

My mother has had two reasonably extended stays in hospital, both with disasterous consequences due to staff having very little understanding of how to deal with her and not listening to family members who tried very hard to help them with her care. I am not sure whether this was due to arrogance or their rigid rules or what.

Funeral

George was pleased to go to his friend's funeral yesterday. One of the pictures on the back of the Order of Service showed a picture of four old friends including George who is now the sole survivor. A PoerPoint presentation was played before and after the service which included a lot of photos of the group of old school friends who had retained close contact until recent years. His wife told me that they had been looking at rest homes for him so he was lucky to go before that became a reality. He had Parkinson's disease with associated dementia.

Visual stimulation

 When Mum was walking she took everything she could lay her hands on and often destroyed things through loving them to death. She would rip things off the wall if she wanted it. Unfortunately this meant that anything we tried to do in her room at the home was destroyed.  Photos were a thing she would carry with her and scrunch them up. I laminated many of these and that did help to protect them for her to a certain extent but not fully. George does the same things.

Mum is now unable to walk and so is in a lazy boy armchair most of the time. Consequently she can no longer rip the stuff off the walls. However she is often awake for periods during the night. I did not want her to just have bare walls to look at and so have put up pictures and stickers (some 3D) all over her walls as well as lights, a canvas of all of us with her and mobiles hanging from the ceiling. Everything is placed out of her reach as she would still rip them off (and has done so) if she could. The staff tell me she loves to look at them and has said that they are beautiful. She waves her arms and reaches out to them. I believe it is important to provide visual stimulation to people with Alzheimer's as they can focus on things they love. At present I am making George a canvas for his birthday which will have 25 photos on it.

Funeral

Not to sure what we will do here. On Saturday George was upset when he learned that his friend had died. On Sunday he was talking about the funeral. When I said to him this morning that the funeral was today there was a silence. I asked him if he wanted to go and he said 'not particularly'. We have talked about who might be there that he will know. I have told him to see what he thinks later. I am wondering if he is worried about being with a lot of people he doesn't know. I have noticed that people with Alzheimer's do not cope well with a lot of people, they are best in a one-on-one situation although I am sure this is different for different people but I have certainly found it to be true for both George and Mum.

FaceTime

George is now on FaceTime with his son and is feeling happy. They are having a great chat so that is really nice.

 I am so pleased as it gives me a wee break but also I think he feels that every time he tries to do something today it turns to custard - just before he put a large bottle of sparkling lemon into the coffee jar and over a litre of red wine into the food processor. He doesn't know why he does these things but for some reason he thinks he is helping.

Catheter problems

At night a larger night bag is attached to the end of the day bag so urine passes through the day bag

and is collected in the larger bag. I have been worried about George and nocturnal wanderings when he drags the night bag around. I try so hard to get him to stay in bed but unfortunately I don't always wake up. Last night he got the night bag off the day bag which meant it drained on the floor. It also meant that the day bag had the valve left open meaning that any urine was not being collected. Very nice!

Luckily this happened not to long before I discovered it but not too much damage but ...

Old friends

George and three others he went to school with have remained close friends over the years. We found out yesterday that one of these friends has just died. He had Parkinson disease but was still at home. This is the second of the four in the last couple of years. The other one now. Lives in Tauranga. He was the one who luckily rang to let us know of this death for which I am very grateful as I did not look at the paper and we may have missed it. This made me realise how important it is that old friends are notified at the times. George would have been devastated if he had missed the funeral. George is very upset about this and I will take him to the funeral on Monday. There are others who George went to school with who he hears from regularly, one lives in Perth while the others are scattered around. Unfortunately most have now passed on.

It was very hot here yesterday and I have found that the hot weather tires out both Mum and George. After I got home from seeing Mum yesterday I got George some lunch and a milk shake and then he decided to go to bed for a nanny nap. At the home I was not able to wake Mum up for very long. When she did,briefly, wake up her eyes were not seeing me or her surroundings but were focused on something we can't see.

Caregivers

George had a new caregiver this morning, a woman which he would have been upset about a few years ago. She just loved working with him and was so good with him, lovely to see.

Would be good to have her again. She certainly could see why he has not been deemed ready for a home yet but as we were saying this is such a cruel disease as there is only one way to go.

Exercises

For the next few weeks someone is coming in each week to teach George some exercises and take him for a wee walk. George is now using a walker more and more. He enjoyed the exercise and walk yesterday and even though these were gentle he was pretty tired afterwards.

I find it amazing how both Mum' and George's tastes have changed. George has developed a sweet tooth while Mum will now eat porridge and milk puddings - I never thought I would see her do this!

Keeping things safe

Both George and Mum love things to death and consequently destroy them. I have just found a lovely cutting which was a story about George when he retired from work and unfortunately has now been cut up. Such a shame.

Several years ago there was a chapter in a book which included a chapter about George. I bought copies of this book and gave them to each of his sons, I am not sure how they felt but I hope they enjoyed these and felt proud of their father, of course they can also share these with their own children.

Something both George and Mum have loved are books I have had published about them. They have both been very proud of these and love sharing them with others. Money well spent. I have found that it is very important to put in small details with the photos outlining who is in the photo and where the photo was taken. There are several places on the web where you can do these. My beautiful grandsons have both asked me to do some for them. They take quite a while to get the photos organised and then do the layout but well worth it.

Memory

How strange - this morning, before I took George to his club, I said I would make him a milk shake. When we got home tonight I had completely forgotten. George just asked when I was going to get him has milk shake!

He can certainly remember things he wants to!

Different times of the day

Sometimes George will wake up and the bottom lip is slack. I have recognised that this means he will be confused. The caregivers have to be very patient with him at these times. When this happens he rarely improves during the day so I need to make allowances for this. I will often suggest he take a nap during the day.

Other days he will wake and be quite with it. During these times he likes to talk and have someone around with him. He also likes to go out for coffee or a milk shake. When we do this he expects to also have something to eat so this exercise can be quite expensive. During the day if he gets tired his bottom lip will gradually become slack. I find he needs to go to bed around 8. This means I start to get him ready about 7.30.

Something I intensely dislike is having to clean his rear end! Let me tell you it is not at all like doing it for a small child! I make sure I have plenty of baby wipes as well as nice soap for me and plastic gloves.

Routines being reestablihed

George had his first day, since Xmas, back at his club. He really enjoys this. While he is there I go to visit Mum. It always brings home to me the journey George is on.

He is still talking about his FaceTime talk from Sunday, several days ago. He is so thrilled to be able to be part of his son's life. He talked to all the members of the family, including the bird and told them all about our cat, Fluffy Bum. This interaction and regular contact will help with his remembering them. This is so important as it really struck me how he no longer recognised many of the people he used to work with - this was at a funeral where he no idea who most of his former colleagues were. Of course it also means his son is well aware of his father's progression in a more meaningful way than this blog can provide.

I had a lovely email from the son telling me how much his father meant to him when he was growing up as well as how much it meant to him to be able to have this regular contact with George and to be able to share his life with George. I read this to George last night and he was so thrilled. He is looking forward to Sunday, I see this as being a highlight of his week. So lovely and it shows George  how his son does care about him and wants him to be part of their lives.

George was pretty tired last night. It takes me a good half an hour to get him ready each evening. At this point I try not to do everything for him but try to encourage him to do as much as he can. I will tell him to take off his shoes which he will then do. This continues for each piece of clothing. He can only deal with one at a time, for example I can't say to take off his shoes and socks. Also he no longer  knows names of all articles of clothing. Of course I also need to deal with the catheter and put his night bag on. Once in bed comes a familiar movie.

Very busy day

Yesterday it was very hot here and I had hoped to spend some time outside. Pigs might fly! I spent some time sorting out the people who go to see Mum, one had a migraine yesterday ( a frequent occurrence ) she had also made other plans for the day of her next visit as it is her birthday; the other wanted to change the day she visited Mum ( she also changed days late last year). All these things take time to organise.

George was pretty good first thing but he had three visitors - two nurses and a case manager. Each of these visits lasted well over an hour and necessitated both George and I being present. Each time they would also want to see how George could manage with doing things like walking.

After the last visit at about 4 p.m. we needed to get some groceries. After we got back home there was a noticeable change in George. He really had little idea of what was going on and his voice even changed. I felt that he was extremely tired so quickly got his tea ready and then got him into bed with a favourite DVD on. He was out like a light and much better this morning after a good sleep.

George enjoyed his day

It was a hot day here yesterday, over 30 degrees. George has a much lower body temperature as does Mum. He was up very early and I was spreading out breakfast and keeping him entertained while waiting for the caregiver - this can be easier said than done.

I took him to Brighton to have a milkshake and something to drink. He enjoys doing this sort of thing however I also have housework to do which I often have to do as and when I can, this can be very frustrating however all you can do is the best you can as I am only one person.

I was able to contact one of his sons on the iPad using FaceTime. They talked for about an hour and George loved it as he was able to stay on his chair and chat away as well as seeing his son in real time. I had hoped to do this using Skype with his sons but this has never worked out. We have now arranged to do this each Sunday. This is great as it frees me up to a large extent to do other stuff, I just need to keep an eye on George and the iPad every ten minutes or so.

Another hot day today, hope to get out into the garden for a bit.

Restless

This morning George is restless. He gets like this when he needs to wait for someone. I have been stretching out his breakfast, cereal and coffee, followed by fruit, and finally toast. He then had a shave - he can't do this properly but if he makes and attempt it is easier for a caregiver to tidy it up. Unfortunately he wakes early and so it is often a long wait for others, in this case a caregiver to shower and dress him. At the moment he is walking up and down and round and round and round!! Others have no idea of how difficult this can be in a restricted space.

I have just found, in our old house, some letters written by his parents before they were married. An interesting read and a lovely slow pace of life then (90 years ago). I doubt that they are of interest to others but I remember George being thrilled when he found them after his mother's death. Actually he read the letter from his father at his mother's funeral which was lovely although my mother told him he couldn't read the final phrase which said 'Yours to a cinder'. I remember one of my mother's cousins throwing away many old photos and letters as she knew that no one else would want them. With our limited space this is something I have to do too. George was a great hoarder so there is a lot to go out.

Yesterday a present arrived for George from his son. He was so excited. It was a CD which I will put on his MP4 player for him so he can listen to it. Music is great for those with Alzheimer's and there is some interesting research in this area.

Catheters

As I have said before caregiving is a learning curve.

As well as knowing virtual nothing about Alzheimer's I knew very little about catheters. I did know that they were for draining the liquid from the bladder but that was all!

These need to be emptied regularly and in order to do this you need to know how to open the valve. This is a trap for young players as there are many different types. The first time it took me ages to accomplish and I found help on the internet. Another thing you need to ensure is that the person with the catheter drinks plenty of water. I can't tell you that George likes water too much and would rather have something else to drink but we get there.

At night a night bag is attached to the bottom of the day bag. You then leave the valve of the day bag open so the urine drains through into the night bag ( this is a bigger bag). I put this inside a bucket at the side of the bed. In the morning you empty the night bag leaving the day bag. You then need to flush out the night bag by running water through it ready to dry. Before hanging this up to dry you need to place a cap on the attachment end. Infection is a major issue so I am using a lot of disinfectants.  Something I worry about is when George goes on a night walk. He drags the bag around with him and I worry that he will trip over. If this happens we are in real trouble as he is too heavy for me to get him up and he wouldn't be able to do it himself. So far I have not been able to stop him doing this.

Unfortunately George came home from the hospital with an infection which has proved difficult to clear up but I think we have now achieved this.

Many people refuse to care for these people in the home situation. It is certainly not easy.

Something that you also need to remember with people with Alzheimer's is that they are unable to cope with several things going on at one time. George is better in a one-on-one conversation. I also find that most parts of the internet are too 'busy' for him. I try to find relatively uncluttered things to share with him - these of course need to be things he is interested in.

Memories

This afternoon an old friend of George's rang from Perth. George immediately knew who he was. After the phone call he told me all about the members of his high school team, the positions they played and what has happened to them. It was astonishing how much he remembered about them all. He even remembered a phone call from one of them to tell him when one of the old team had died by putting his head under in one of the hot pools in the North Island.

At he moment George is able to talk on the phone and luckily he has two old friends from school days who ring him several times a month. One lives in the North Island and the other in Australia. It is so nice of them. When someone rings for him I immediately pass him the phone and he feels so special and talks about the conversation when he hangs up.

After I had showered and dressed him this morning - this takes over an hour - I took him out for a coffee and something to eat. He loves doing this and there were some buskers there playing jazz music. We sat in the sun and listened to them. George loved it and was singing along with them.

Reliability

Something I have found, since George has had this condition, is that I can't rely on anyone else. It is really hard occupying someone with this condition while you are waiting for others. This morning a caregiver was supposed to come at 9 a.m. Guess what, no one came. I rang the company to try to find out what was going on but only got an answering service. Honestly I spend half my day sometimes just waiting for people to deign to show up. I admit that things like this didn't use to worry me but with trying to look after George during the waiting time is not easy and some people keep you waiting for hours. Before I would have gone and done something else but now it is not as easy to do that.

I had a laugh this morning as I heard on the radio about poor spelling. Apparently the Oxford dictionary looks to get the common errors. Places they randomly chose are the newspapers, university assignments, and Facebook. I think what many people don't realise is that employers and others often judge people by their lack of knowledge.