Routine

I have found that routine for those with Alzheimer's is so important. That way they know what is going to happen.

A week ago George was supposed to go out for a walk and coffee with a caregiver, she rang not long before to say she was sick so they did not go. I took him instead but...

that night he refused to take his shoes off to get ready for bed and in fact he was determined that he wasn't going to bed as we had to go to his club NOW.

The carer got me in to calm him down (he was very agitated). Finally succeeded.

Luckily this has not happened again. He knows that when he gets into bed he will have one of his old movies and a red wine!!

In the first days I used a whiteboard so George could see what was happening each day. I never found this very successful although I know that some others do. George would not go and read it nor would he when I suggested that he do this.

I am going to take some respite care over Christmas this year and spend it with family. I am SO looking forward to it. It will be a first family Christmas for a long time.  

The journey

Each person's journey is different which makes it especially difficult for caregivers as you are not sure what is coming next.

Strangely Mum and George's journey has been very similar.

George has been very confused this week. Often those with Alzheimer's can 'rally'. Mum did each time my sisters visited. George did last weekend with his son. This is great as it gives them all quality time. Afterwards they seem to 'go down' and become more confused for a time and they are also very tired. . I guess this is because while the visits are going on they are the centre of attention and they are going out and about a lot. By the end they are tired and it takes a while to recuperate from that and go back into routines. This is even when the visits are of short duration.

I can certainly see that had Mum not have had her fracture and landed in hospital for a month I would have been able to cope with her at home for a lot longer. So sad that so many health professionals are not understanding about dementia. If something similar happens to George I would also expect to see a similar deterioration.

Problem solved

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

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

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

In and out

We have comings and going today; the morning carer for George's shower, later came a nurse to change George's catheter bag and then this afternoon a guy to go over some exercises with George. All went well, just as well that I have got George quite used to doing what I tell him, he never questions it and just relies on me telling him what is happening and when. I talked to the nurse today about some plaster strips which have a valcoe across the top. George mucks around a lot and somehow pulls the tube down and can get in intense pain which means I have to carefully get a plaster off and rearrange it, the valcoe one makes it easy to that. She is dropping some off to me tomorrow. Despite these people I was still able to keep routines going so all is good. George has also been walking up and down practising with his walker!

I am meeting the lawyer tomorrow. They had organised this meeting and then sent me an email to say that a paper that needs to be signed needs a death certificate which we do not have yet. They went on to say that it could be signed by someone who had been at the funeral ( I assume where the body was ) and of course we did not have a funeral or ( and this one stopped me in my tracks ) someone who had seen her after death. I just sat for ages before I replied! I hated seeing both my mother and father's bodies. It is so final. They are not there. Finally I emailed back that I could do it but I have to say it was not a good feeling.

After that I got on the web and booked myself a week's holiday on the Gold Coast at the end of July.

A normal day

The lovely weather is back again after the southerly yesterday so that was great. George had a good sleep last night so he is not too bad today. I do find that I need to give him food and drink at regular intervals throughout the day. This keeps him happy. I am not sure why, but eating biscuits or some thing similar he eats it all except a bite sized piece or two from each biscuit. . Maybe he thinks he is supposed to. Plates therefore are left with several bite sized pieces on them. I have to continually stop whatever I am trying to do to get him the food and drink as he is not capable of doing this.

He has a cousin who is now 101 and has been living alone and looking after herself until now. Her daughter rang this morning and said that they had put her into a home. She has been in hospital with some physical problems although she does not have dementia. She is really upset as she did not want to die in a home, it is such a shame as none of the family are willing to help with her care, very understandable as they have their own lives to lead. It certainly made me think about the guilt I felt, and still feel, that I was unable to keep Mum at home on my own. A lot of people do not take this step if there is anything else they can do.

One of my sisters got a speeding ticket driving Mum's car while they were here. This time I am writing in to try to get out of it as last time one of them got a ticket it cost me $200.

In between getting George's needs met I have been able to achieve quite a bit today! I took him to Brighton for a coffee and pie. I have changed his bed, I have done some gardening including planting yams which I thought would be lovely to have when one of the sisters was here, done two lots of washing and some tidying up ( that doesn't last cos good old George then pulls stuff out all over the place - I can but try ).

Time

All sorts of things take so much time and at the same time I am trying to keep George into a routine and of course he doesn't understand why I need to be doing other things. After the problems with the computer on Monday I had to go to get the computer back. After that I had to visit two banks and prove my identity to unfreeze these accounts - this is not a two minute job. I have another bank to go to next week and have an appointment there. Before going to the banks ( George was in the car ) I bought a milk shake for him and gave him some magazines to look at while I was doing this. He was very happy with this. After this I took him his favourite cafe for a chicken and cranberry pie with a coffee which he loves doing. The wind was very strong and although it was a warm day he was not particularly happy going from the car to the cafe and back we managed it. We then returned home and I was able to the routine until late afternoon when a person from the hospital decided to visit us to show us how to use his new walker. At this time I am generally preparing the evening meal as I need to get this on the table when he is ready, you cannot be very flexible as you probably normally are. I try to run things like clockwork as things are better for him and he is happier when I do. He is a lot better than he was at the weekend.

With Mum's death there are lots of things I need to do and I am trying to make appointments and things in the time I have when he is at his club. I had papers to sign yesterday and was able to have these emailed. I then printed, signed, scanned and emailed back. Takes time too but a lot less than going to do it and a lot less messing around. What did we do before home computers were the norm?

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.

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.

Weekend blues

George does try to help but unfortunately it generally creates more work. On Saturday I wash the bed linen and let the bed air while I go to visit Mum. I went into the bedroom to find a sheet plonked on the bed and the duvet inner taken out from its cover, just what you need.

George is certainly not coping with toilet issues at the moment and often comes out of the toilet area carrying his pants. It is very difficult to know how to deal with things sometimes as often those with Alzheimer's really have little idea of the fact that what they are doing is not the way to do it.

Another thing I will have to watch is whether he is starting to see things which are not there. Yesterday he looked over the arm of the chair and said to the floor, "oh there you are, what are you doing there?" When I asked who he was talking to he told me it was the cat. At the time the cat was having something to eat in another room.

Routines

In the last post I spoke about the routines in relation to the person with Alzheimer's. I also find it important to have a routine for myself which works around him. For example I check and clean up any mess in the house as soon as I wake up, I wash towels on Friday, bed linen on Saturday (before going to the home to Mum). There are times when I can go and have a coffee with friends e.g. Monday or Thursday around 10.30.

As a caregiver there are times when you want to let off steam. Most others don't want to hear and don't understand. Other people just want to think you are quite happy in your situation or will tell you things such as 'we all have our challenges' which is of course quite true. I think that part of the problem is that none of us ever sign up for this role (I can't say it was ever something I considered). Other people who are in the same situation (or have been in a similar situation) have an understanding as do the people at the Alzheimer's, it is better for everyone just to talk frankly to these people.

It is important to take the time to enjoy the odd little special times as they arise.

Spoke too soon

I spoke to soon when I wrote on the blog yesterday. George was very confused all day and not feeling well. I put him back to bed for a while and then during the afternoon spent a lot of time chatting to him.

I find that routine is best. Each day I get George breakfast, morning tea, lunch, afternoon tea and dinner. After tea I get him ready for bed and then put on a DVD of his choosing.

Monday: caregiver to shower and dress. Julie ( a caregiver) takes him out for an hour and they go to have coffee (costs me $10). 3rd Monday in the month to Alzheimer's coffee at Wigram

Tuesday: caregiver to shower and dress. Harakeke club - 10.30. I drop him and go and see Mum. After I have seen Mum I do any shopping and then come home. I take a child for reading later in the afternoon and then George comes home in the van.

Wednesday: caregiver to shower and dress.

Thursday: caregiver to shower and dress. Harakeke club - 10.30. I get the groceries and come home. Later I have coffee with a friend and then pick George up from the club (about 2.30 - 3)

Friday: caregiver to shower and dress. Go to see a friend who is recovering from an operation. 3rd Friday in the month Alzheimer's memory group. Last Friday in the month Alzheimer's coffee afternoon for East siders

Saturday: I get George dressed. I go the home to visit mum. At present George is OK to stay at home alone. I try to get all towels and sheets washed before I go in the morning

Sunday: I get George dressed.

By having them in routine it seems to give them structure.

Do you ever have those days when you are not feeling well and just want to spend the day in bed? As the sole caregiver I can't do that. I am just getting over a cold and chest infection. I have found that the only thing you can do is get an hour in here and there (usually that is not actually when you really feel you want it) and go to bed early.