Food

Last night was another dry night, fingers crossed.

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

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

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

Night time

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

Dry bed this morning!!

Continence problems

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

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

Long morning

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

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

Three times lucky

One of those days!

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

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

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

Bewildered

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

Memory is so random

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

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


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

Death

From The Press 17 November 2014



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

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

The constant mess

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

This is known as rummaging.

 

 

Interesting times

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

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

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

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

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

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

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

Sundowning

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

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

Where is ...?

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

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

Reliability

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

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

Strange behaviours

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

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

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

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

Messages for caregivers

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

Adapted from : Schmall and Stiehl (1987)

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

Advice

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

Later has come.

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

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

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