Good days and bad days

I often think good days and bad days are like 'the good, the bad and the ugly' when dealing with those with Alzheimer's especially when they are incontinent.

Yesterday I had to change George 5 times! I have just changed him for the first time today. Also I need to wipe his bottom as he is now unable to do this properly (baby wipes and rubber gloves). I often find myself putting on several loads of washing each day.

I was discussing this with the caregivers in Mum's home and they have several men in there who are the same. Someone told me I would know what to do as I had had a child! This is not true. It is the same with all sorts of things about dealing with Alzheimer's. A lot of people think that with Alzheimer's they go back into their childhood. It is different with each person but I have never seen anyone doing that. With the people they need to be treated with dignity and respect. People think you can divert them - this is often easier said than done and they are often bigger and stronger than you are. When George has made his mind up to do something well that is the end of that there is little I can do or say to stop him.

Family visit

Last weekend was a long weekend here. George's son lives in Auckland. He came down for the weekend to see George. He came over on the Sunday afternoon and took him out for a couple of hours. George was thrilled and has been telling people all about it ever since. It meant a lot to him. The contact with family is really important for these people with Alzheimer's. At present George is still able to carry on quite a conversation (admittedly there are good days and bad days) but how long he will be able to is anybody's guess. It is important for the families too that they make the most of the time they have with the person.

I remember at George's mother's funeral someone there was in tears. George spoke to him for a long time about his problem. It was about this man's relationship with his father and how he had not bothered to be there for celebrations (e.g. special birthdays or Christmas) even though he knew his father desperately wished for him to be there. It is so sad if people are left with a feeling that they could have/should have done more. I remember that not long before my father died my son spend many days sitting watching cricket and talking to his grandfather. I know that this time meant a lot to both of them.

Live every day as it comes and make that time to show your parents that you care. Surprise them with a visit at Christmas time or a special birthday. Spend time with them.

Hide and seek

As I have mentioned before something Mum did and George does is hide stuff.

George brings shoes into the lounge - always single ones, never a pair. Many times I can find plenty of single shoes but not a pair when we go to get him dressed. He goes for a walk once a week. He had a pair of shoes especially for this but unfortunately one of the shoes has been missing for ages now. I got some new ones which I keep hidden so he can't find them and just bring them out when he is going for a walk. This is the only way I can keep track of things but unfortunately I can't hide everything!! Shirts are rarely left hanging in the wardrobe - they end up all over the house and often he is wearing two or three.

There is not a lot you can do about this just go with the flow.

What a morning

As I have mentioned with George, at the present he has retained a lot of memory. Last night a builder was in to see about the place where we live in relation to the repairs that have to be done. He was asking if I would get an accommodation allowance but we won't get that and also he asked about a container for the contents which I will also have to pay for. Poor George obviously understood some of what was being discussed and afterwards asked me if it would help if he went and lived in our munted house!! I felt dreadful, he does try so hard to help and although it is not an easy situation to be in 'thems the breaks'.

I told him not to worry about it as nothing will be happening for ages however it must have been on his mind as he did not sleep well.

this morning he looked awful when he got up and was really 'out of it'. I gave him breakfast in 3 stages (as I usually do) fresh fruit, rice bubbles followed by toast. He was still restless and not really knowing what was going on. The caregiver found the same. For example while he was shaving he took his new razor to pieces, took me ages to get it back together again!!

Then we had Harakeke and I had to visit mum - got the washing on before we left and got it out the minute I got home. He was fine when he got to Harakeke and sat with some other old men and chatted away. He really loves socially mixing with the others.

Really you can't worry about other things I have found, just concentrate on each day as it comes.

Just what you need

Tonight I am putting on tea while George watches the early news (I thought!).

Off he goes to the bedroom and puts on two more shirts, takes off his pants and continence pants. He then wees all the way down the hall to the toilet and then does a poo which he gets all over his clothes. I then have to make him get all his clothes off - a singlet, a rugby top and two more shirts! As they all have poo on.

Tea has to wait until I have finished.

I keep a bucket with white vinegar and water with a scrubbing brush at the ready to deal to the floors. I also keep plenty of baby wipes at the ready!!

On their own

When left on their own those with Alzheimer's often wander off and get lost. I am extremely lucky as though I have always been aware of this neither Mum nor George has ever shown a tendency to go out alone.

What I do is put on a favourite DVD and leave a plate of biscuits and a drink on the kitchen bench. This seems to work quite well. I do this every Saturday when I go to Mum.

You do have to be prepared to clean up the mess when you return. In addition to bringing stuff out all over the place this morning a found his continence pants on the the floor and just put a pair of long pants on. Change and clean was then the order of the day..

What a mess

Today we had to get George to memory clinic.

As soon as he had George finished we had to leave so I put the washing on and off we went. After memory clinic we went to see the man with the bad back.

Got home and got the washing out. Went to go to the toilet....

• Wee all over the floor
• Poo all over the toilet seat

Guess what I did before going to the toilet (and I was busting!!!)

Routines

When you are caring for a person with Alzheimer's the career will find that their life needs to work to a routine. My life with George certainly is. I find that I am dashing around all the time taking him to and picking him up from various activities. Some of these I am expected to stay while others this means that I may have an hour or two to myself which unfortunately is not enough time to go home but is time to have a coffee or something.

I often have to leave the washing going when I leave in the morning. The first thing I need to do when I get home is get that washing out.

I find it best to organise George's clothes ready for the next day before I go to bed. I do this after I have got him into bed.

Something I do find difficult at the moment is that I have broken a tooth and am trying to dash in and out to get this seen to. I have been asked if I want a sedative and of course have had to say I can't as I can't risk it and have no one to help me if I need it. These are issues for all caregivers.

Eerie

In my mother's home was a woman named Christne. Her husband visited regularly a couple of times each week (he regarded staff there as his family) and both he and I would be at the home during Christmas dinner. He then went to family for the afternoon and then tea. He had a heart complaint and had been in hospital several times (staff would go and visit him there) and had been hoping for some time that she would predecess him as he was worried that she would not have regular visitors. We have ensured that someone sees our mother every day and she has a massage once a week. While I do pay people to go to see Mum it is worth it as having visitors provides a quality of life.

He died on Friday. Christine had been very ill for over a week and her son had been in to the home regularly during this time. The day after he died another of their sons had just flown in from his home and went in to see Christine and he told her that her husband had died and that she could now go to meet him. She appeared to understand and he had seen recognition in her eyes. 5 minutes later she died.

There is so much we don't understand.

Hat

George wears a hat all the time. He puts a hat on to move around the house, he puts a hat on to go out, he puts a hat on to go outside. Now he puts a hat on (and sleeps with it on) to go to bed!!

Those with Alzheimer's often have behaviours which they repeat over and over for no apparent reason.

Something both Mum and George have in common: Mum went through many packets of tissues, twisting them around in her hands, George brings large pieces of toilet paper which he twists and discards - I find it everywhere. Mum no longer does this but it does seem to relieve anxiety in these people.

I find it best to just let them do these things and go round behind and pick it up. This saves arguments or frustration.

Depression for Caregivers

It is well known that those caring for a family member suffering from Alzheimer's often experience depression. Some research points to this being true whether the person is at home or in a home. I guess a part of this is that when someone goes into a home the career suffers an incredible amount of guilt as they "weren't able to cope better'. While this may not be true when someone is in the throes of depression they probably will not see it as such. Bergman-Evans says that every day holds unexpected challenges and loss of personal control and that both emotional and physical health are at risk.

Other people don't want to know about this, I guess that is to be expected as they want to live their own lives.

Here many people are also suffering depression due to the earthquakes we have had. This has caused major loss for many people here and counsellors are still working very hard helping these people which is still being discussed in the community. We also have many ads on TV urging those suffering from depression to tell others, friends and family, about it.

I know that for at least the first two years after the earthquakes I was certainly suffering depression caused by many things happening in my life (many of these things resulting in losses). I definitely found that my health suffered both emotionally and physically. This was the first time I had ever suffered from asthma. I have frequently felt completely overwhelmed by everything. I found it hard to talk to anyone especially as someone actually told me that they didn't like talking to me as I sounded as though I was sorry for myself. Most people here were in similar situations and many had been traumatised during one of the earthquakes.  I also found it very difficult as the only family members here were ones with Alzheimer's so that wasn't much help to me. Although in reality I knew that a lot of things would eventually work out it is hard to keep that in mind. It took me a long time to work through it all pretty much on my own.



I knew I had to keep going for Mum and George so that made me get out of bed in the mornings. I took any contract work that was offered which gave me a sense of 'normality'. I have done voluntary work in the community right through, this gives you a sense that you have something that is valued by others. I try to meet a friend for coffee once a week and just chat about any old thing, not important things just light-hearted. I got myself a new cat; so I could love it and she could love me.

Some people we also know, through my sister, are a couple. The wife works and also is one of the visitors for my mother. The husband has had a very bad back requiring two major surgeries which has meant that he has been house bound for over two years. He has been in pain and bored being on his own so much so we try to visit him weekly and always take cream cakes or sponges for a treat for him and George (I always take enough for the others in the house to have that night) which of course costs me quite a bit. He and George enjoy talking together. Before this he was a caregiver. I sometimes leave them while I get a bit of shopping done. This takes his mind off his own situation, gives him someone to talk to and also we are claiming for him looking after George so that he gets a small allowance. This then helps his self esteem. Of course this makes me feel that I am helping someone else.

I guess what I am saying here is that for the caregiver you are often 'on your own' so you have to create the opportunities for yourself.

Hide and seek

Something I find really difficult with George's incontinence is that he does still use the toilet during the day. This of course is when he often gets it all over the floor or he will come back out with his pull ups and long pants in one hand. He rarely flushes the toilet so I do go in regularly to flush the toilet and wash the floor which isn't too bad I guess however;

Hide and seek: something George also does is come out with only his long pants as he has hidden the continence pull ups. You may think it should be easy to find them but that is not nessessarily so. I can spend a lot of time finding them and of course there is another load of washing.

Baby wipes are also needed constantly.

Weekend

I was able to have time with my grandsons this weekend while they were down from Auckland. I have to organise everything for George while I am out and also realise that when I get home there will be a mess for me to try to sort out as well as spend time with George.

I am very aware that I cannot get sick! I still need to be on deck to get the basics done such as meals, washing, floors and taking George to all the places he needs to go.

I am also aware that it is becoming more difficult for others to stay here as it can be rather confronting. I am aware that it has been this way for some people for some time although for others they are pretty understanding. I have promised my grandchildren that if they let me know in plenty of time I will put George into respite care so they can stay.

Unbelievable

I picked George up last Sunday...

Since then he has managed to put toilet paper all over the place. He pulls stuff out of his wardrobe and drawers. He never puts anything back and it is often difficult to find things. It is amazing how much of a mess he is able to make. He does not mean to and he tries so hard. He often just wanders around taking stuff - everything is 'his'. I find stuff in the strangest places.

Toilet floor - back to constant cleaning in the toilet.
Washing - back to washing every day, sometimes more than once

We also have a new person on Wednesday and Thursday morning and it is going to take me some time to get him organised. At the moment he calls to me every 2 seconds to help him with something although I have all the clothes and everything ready. We will get there.

It was nice to be on my own for a while.