Maintaining progress

George has started going out for a walk in the sand dunes more regularly so that is great, keeping up the exercise is so important. He is continuing to have more nights with no issues and is so proud of himself so that is fantastic.

Yesterday I took him to the bank to get some money out. He still does this himself but the girls in the bank are wonderful and help with it, they know and understand that he has Alzheimer's and go out of their way to look after him. This is great as the longer he can continue to have some independence the better and it gives him confidence in his own abilities.

A quiet Sunday

George was so happy with himself this morning as he had no toileting issues throughout the night. The whole thing takes away all your dignity. It was exactly the same for mum and any of us would feel the same way. It is totally understandable that some of those with Alzheimer's get aggressive - it must be so frustrating to have everything slowly slipping away.

Took George out to the markets with me today to look for some things my sister wanted. Unfortunately we were not able to get them but George enjoyed his trip out and we went for a coffee (and he had a toasted sandwich) in Brighton which he loves to do.

An old friend of George's rang him tonight which was lovely - he really enjoys hearing from friends and family. About half an hour after I finished this post George's youngest son rang so he also enjoyed having a chat with him.

Making progress

Last night I helped George get ready for bed at an earlier time so that basically I did all his dressing for bed. I got his pads and pyjamas on and then he decided to put trousers on over top. I explained that he didn't need to wear those to bed. This morning I found that at some time he had put track pants on over the top of the pyjamas. Anyway the pad and disposable pants did the trick and were put in the rubbish this morning.

This is such a strange disease. George is still capable of catching a bus and going to Brighton to do shopping, banking, go to the cafe etc and yet he he difficulties with toileting and dressing. Another thing he has trouble with (which I didn't expect) is writing. When he does try to write it is all over the page and repeats the same thing over and over again.

Toileting issues

George had another night where toileting was an issue. Another huge load of laundry to soak and wash. This cannot go on like this. I have rung the hospital to try to get some more support to cope with this. George doesn't seem to be particularly aware of it although today he tried to clean the toilet floor. I know he tries to help but ...

Tonight I have put him into his pyjamas (with a pad and pants underneath) and then I found him trying to put a pair of trousers over the top. He told me he was going to wear them to bed too.

This b... Alzheimer's it is so hard as they are all different but George is certainly losing continence and yet he is still able to remember most things and to carry on a good conversation resulting in people not believing that there is anything wrong with him.

Night times

George wore a pad and disposable underpants to bed last night. They worked well and were discarded this morning.

Today he should have gone to the Evergreen Club but once again decided he didn't feel well and wouldn't go. I suspect that this could be a problem as it is important that he goes to these clubs to have the interaction and social activities and also it gives me a little bit of time to myself. So far in 4 weeks he has been twice and twice felt ill. As soon as he gets his own way and I ring to say he won't be there he perks up. I am going to have to get a bit harder lined about this.

ANZAC day

I awoke this morning to George lying in bed going 'oo oo oo', and shaking so I said 'do you need to go to the toilet?'. 'Yes' he replied. 'Well go then' I said. Off he went.

I would say I was just in time as while he did not soil the bed some of his clothes were soiled and I have them soaking. The doctor gave me tablets for loose bowel motions so I have given him some of those.

Today I went to help a friend with a computer problem. George wanted to come so off we went. When we finished I couldn't find George and he had gone on out to the car. As we were leaving I asked him why. He said he wanted to go to the toilet. I said why hadn't he said but he didn't know. We stopped at a shopping mall to go and get a coffee and sometime to eat (and so George could go to the toilet). When I parked he told me he wouldn't make it. Off we drove and luckily just down the street I found a portaloo so pulled up right beside it and told George to move as fast as he could - about 3 steps - so off he went. That is a blessing, we still have portaloos around as some people still do not have proper toilets after all the earthquakes we have had here.

Before going anywhere I need to check he has been to the toilet (I did today before we went out). I guess all these things are pretty demoralising to the person involved.

Walking

George had a visit today from the exercise lady who is working with him. He did the exercises with her and then she asked about how often he had been for a walk along the beach. He admitted that he hadn't so she suggested that he needed to. This afternoon he did indeed go for a walk on the inland route in the sand hills so that was great. Admittedly he is now having a snooze but that is OK too. He has been enjoying all the programmes that have been on about the World Wars - ANZAC day tomorrow.

Saw mum in the home today. She just loves to talk one on one to someone. She was quite lethargic but happy enough otherwise. We talked for a couple of hours. She just loves the attention and hates not having it. She is losing language and uses 'yoghurt' for anything and also people are often 'Lucy' although she has started saying 'that lady' and then I have to guess - I am getting extremely good at guessing but it does help that I know who has been in and out and also I know (having lived it) what she is talking about in her earlier life.  Today she looked at a photo of my younger sister and said 'that looks like Jennifer' - her own name and then started stroking the picture.

Food

I need to watch George and what he tries to eat. Today I had to go out for a while to help someone with some computer problems. George did not want to come but wanted to watch the war stuff on the history channel - he really enjoys that. When I got home I found the dishwashing tablets on the bench (from under the sink). George had taken one out of its wrapper and tried to eat it. He asked me what it was and said that it tasted like caustic soda. I explained it wasn't for eating but for doing the dishes. He had also got himself biscuits and tomato etc so was having plenty to eat. He knows where the food is - in the pantry - so I am not too sure why he would go under the sink to find more!!

Phone calls and Skype

After George had been to the doctor one of his son's rang that night. George told me it made him feel as though he cared (the son). These things really do matter.

Today I got someone he used to work with on Skype and they chatted for three quarters of an hour. George liked the opportunity to have a great conversation with this person. The beauty of Skype is that you can have the video on and see the other person.  This social interaction is important.

Something I have found is that those with Alzheimer's love to have one on one with someone. They like all the attention focused on them. Unfortunately this is not always possible but it certainly seems to help them.

George also loves to chose a DVD to watch in the evenings. This means that I generally go to bed to watch the programmes I like.

Evergreen club

George was not keen on going to the Evergreen club so I got some wall to wall moaning on the way there. I explained to him that it was something he needed to do. I am pleased to say that at the end of the day he was happier.

Mum has been more confused lately and the doctor has ruled out another urine infection. He says the confusion is just a sign that mum's dementia is progressing. He said she could last 5 or 10 years.

Clarifying doctor visit

Reading my quick post yesterday I realised that I had not explained the doctor visit very clearly. The doctor had taken a blood test to check blood/sugar levels and things like that. While some of the results were higher than they should be the doctor felt that they would come down through George not drinking. He also feels that the toilet issues are due to alcohol and not Alzheimer's.

It all gets pretty degrading. 

Great news

The doctor was really thrilled with George for not having had a drink for 3 days. He said that it showed an improvement. He had got back the results from a blood test and told him that by continuing not to drink his levels should return to normal. That certainly would be a relief.

Memory clinic

Well believe it or not George has not had a drink since seeing the doctor on Monday. He is much better for it. He has been drinking coke and ginger beer. No more toilet issues thank God.

Today we went to the Memory Clinic which he really enjoys. When we got home he did tell me he had too much on his schedule! I wasn't sure what he was on about but he was worried as I can not take him one day and have organised for someone else to take him in so he was obviously concerned about that. At the moment he has been dressing himself as Mark is away. I noticed (when we got home) that he has his pyjamas on under his clothes...

No wine

Well George is not drinking wine or gin so the doctor must have got through. He is drinking a lot of ginger beer and is enjoying that. It is great to see the improvement particularly in having no soiled clothes/sheets etc.

Took my grandchildren to see mum this morning. She does like to see them but I am not too sure that she really knows who they are although she does appear to sometimes. They have done a urine test but she does not have an infection so it looks as though the Alzheimer's is progressing. They rang me late this afternoon to say that mum had been found sitting on the floor in her bedroom so they were not sure how she got there, she seems OK but I am going back to the home on Thursday to see the doctor.

I took George to see a rest home this afternoon where he can go for respite care while he is still at this level. Tomorrow we have memory clinic. I sometimes feel as though I am going from pillar to post with all the things I need to do with regards to Alzheimer's.

Visit to the doctor

Well an interesting visit to the doctor today. He has given me pills to give to George when he starts the 'runs' again. He also explained to George that this will be caused through his drinking and that at the rate he is going it is going to be difficult to see just what is going to kill him first!! I wasn't sure if George got the message but I took him for a coffee after that and we talked about it. As he said the doctor had made things very clear.

I am going to get some adult naps to use at nights when this happens in the future. It will be interesting to see if George modifies his drinking and whether the doctor has given him a good scare.

A good night

I gave George 2 boiled eggs last night (I had been giving him very bland food for the last few days) and that seems to have done the trick as this morning we have a clean bed thank goodness. I will ring for a doctors appointment soon. I will also go to the Nurse Maud hospital to get some naps for night time and an undersheet for the bed.

More soiled sheets

George decided to go to bed in the spare room last night and this morning the sheets are soiled. I am finding that I am just washing so much at the moment; two sheets each day as well as a lot of clothes.

I am taking George to the doctor tomorrow - it is really difficult coping with this. This really is a deal-breaker to caring in the home, you can just do so much. The doctor may be able to find out if George has an upset stomach or what. We will also need to find out about naps for him to wear as it is impossible at the moment. Every time I think I have finished cleaning up I find more somewhere else. It feels never ending. It also means that I am reticent to take him out anywhere...

Stomach problems

George still has his stomach upset. I have given him bland foods to help him. I am not sure where he got this from or what he has eaten. He is not unwell but just has a lot of problems with going to the toilet. What I am not sure about is if this is part of the disease or to do with his drinking. He is certainly getting into a lot of a mess so I am doing loads of washing.  I have found poo on his clothes, in the bed, on the floor, on chairs and on cushions; he seems quite oblivious to it. There is certainly no way I would feel comfortable about going away anywhere with him. Unfortunately these toilet issues make it really difficult in the home so I need to talk to someone about this and see if they have any ideas. He is still having his wine. He was supposed to have a lady round this morning to see him about the exercises he is doing but as he was not too good I put her off.

My grandchildren are in Christchurch at the moment and so I was lucky enough to be able to spend some time with them. We went out for lunch, then to the skateboard park (they love that) and finally to the home to see mum. Mum was in bed having a sleep. She is very tired at the moment and certainly not her usual self. She knew who the boys were and they said that they would like to go and see her again on Tuesday before they go home so that is great.

Memory clinic

George went to the memory clinic yesterday and really enjoyed it. He feels that it is beneficial and helping him with strategies to help him.

Today he was supposed to go to the Evergreen club but he refused to go as he has an upset stomach. I had found a lot of poo over the toilet and the floor this morning so cleaned it up and got him some toast for breakfast.

I had an appointment with our accountant so I left him while I went there. When I came home I found more poo all over the toilet and floor again - George seems quite oblivious to it. I bought home some Easter eggs which he really enjoyed and I notice that his stomach has not stopped the wine drinking. This is where it can be very difficult as you know that it is the disease but it just seems there are some really awful behaviours that also become apparent.

I find it necessary to remind him about exercises and things like that. He is quite content to just continually go through stuff and drink his wine.

Coffee morning

Took mum out for coffee today. She is finding it more and more difficult to do things such as getting in and out of the car, sitting at a table etc. I took her to Brighton where we met George. Both of them enjoy this time even though mum makes little sense a lot of the time.

George went to the bank and also travelled home by bus - it is important that he keeps doing things like this independently so that he retains these abilities.  When I arrived home he had drunk a bottle of wine! It is hard to keep him off it when I am not there and even then he puts it in coffee mugs.

Hoarder

George is a hoarder and always has been. Before the earthquake we had a big home so it wasn't so bad but now we have moved to a smaller home. I have ensured that he has a whole wardrobe to himself plus a big dresser but still... He is constantly going up to our old house and bringing down rubbish which we have no where to put it all. It is really frustrating as I have to do all the housework and gardening as well as everything else and at times I just feel that as fast as I tidy he puts more rubbish around.  Also once he has stuff down here he constantly pulls it out and goes through it. I then have to remind him to put it away (or I do). This also happens a lot when I go out to see mum for example. I do realise it is all part of the disease but it can get frustrating - it is like when the kids are little and leave their toys all over the house.

The big difference between being a caregiver for the kids and for an Alzheimer's person is that the kids are going to grow up while the Alzheimer's patient is only going to get worse.

Easter

A very quiet Easter for us - there are times when you can feel quite isolated. But we did not feel totally on our own. My sister sent a lovely e-card for us which we both enjoyed and then my son and grandchildren rang from Auckland. One grandson was going out on the harbour fishing with his father (a chip off the old block) while the other had things he wanted to do. They spoke to both George and to me so that was lovely. Both grandsons had been into the chocolate Easter eggs and enjoying them - they sounded very excited.

My grandchildren and daughter-in-law are coming to Christchurch this week and I am very excited. They wanted to see us Thursday but unfortunately I have already made an appointment that morning which is quite important - I did that as George will be at the Evergreen club that day. They will be here for over a week so I am sure that they can fit some time to see us. I particularly want to make sure that the boys see mum as she wants 'to see the boys before I die'.

It is really good for George when family ring or email as then he feels that they care. It is really sad when family members do not bother to keep in touch although it is a reality for some people. For others it is really fantastic to see how family members and friends help out during the rough times. My sisters Skype and email which is lovely and I have another cousin in Australia who rings and one in Wellington who stays in regular contact. I know that it is difficult for everyone as they also have their own lives  with their own problems and often, I think, it is easier not to think what is going on elsewhere.

When a family member had cancer some time ago it was nice to see different family members leaving their own families and going to help out at different times, I am sure it makes a difference for all concerned. For those with Alzheimer's it is similar as they know that there is no cure and they are fighting hard against the disease and they need all the support that they are able to get from their families and friends.

Skype is a great way to keep in touch and it costs NOTHING.

Socialising

Last night George really enjoyed himself, it was great. We went to see some old friends for drinks at around 5 pm and ended up staying for tea. George was like his old self and had a lot to say. Our friends were very good and we all gave him plenty of time to find the words he wanted and things like that. He spoke quite openly about his Alzheimer's and how he is trying to stave off its progression.

I was well aware that I needed to be home reasonably early to get ready to go to see mum.

This morning I went in to see mum quite early as I knew a lot of people would be around the coffee shops and things as it is Easter Saturday and shops were all shut yesterday. When I got there I found mum in her room lying across her bed asleep. She was very tired and didn't want to go out (most unlike her) so we spent several hours looking at photos and talking about her past. She was very confused with most things although she would certainly have some lucid moments. Her back was not sore and she did seem more contented today so that was certainly a positive. I have asked the home to check her urine in case she has another infection.

I took in Easter eggs for all the people in the home (small marshmallow ones) - mum had about half a dozen. They came to take a blood test for diabetes but I did suggest that her reading may not be accurate with all that she had been eating.

While I was out George got the bus to Brighton and had a coffee and toasted sandwich. It is so good that he is still able to do that so confidently. He also walked to the end of the street to catch the bus - over a kilometer away. Last night someone said that they thought that they had seen him walking so he thought he would today - great stuff...

Later on George went up to our old house and started pulling more things out and going through them.

Evergreen group

Meeting and socialising with others is important for those with Alzheimer's. There are clubs here where people can go for the day. These clubs are very popular and it is difficult to get into one of them. This is because of the number of people now being diagnosed with Alzheimer's. To get a place in one of these clubs the social worker from the hospital organises it for the person. The Evergreen club rang earlier in the week and they had a space on a Thursday and thought that George might like to go along to have a look.

We went for morning tea and then, as George seemed to settling down with the others, I left him for the day. The day is from 10.15 to 2.30.

The timetable:

• Morning tea
• Quiz
• Housie
• Exercises (chair)
• Lunch
• Games - cards etc

George did tell me he preferred the people at the memory clinic but all up he seemed to enjoy the club.

Before the earthquakes George had a group of friends who met weekly for lunch. The earthquakes have disrupted a lot of our lives. George's group no longer meets as the place where they used to meet has gone and with the roads being so impossible nothing was done to reorganise their meeting again. One of the members died (old age, not earthquake). George also no longer drives - he 'lost' his car and then had an accident he didn't remember having, so it is important that I make sure that he goes to meet these other people. It is not enough to just have the company of your partner and family the stimulation of others company is also important. 

Memory clinic

George started his memory clinic today. He enjoyed it. While he was doing that the carers had another meeting where they discussed some of the issues for carers. George finds that talking about the issues he has with others who are in the same situation is helpful. These clinics are held weekly for five weeks and then they have meetings once a month.  They also look at different strategies to help them cope with the disease.

visiting

Went in to mum this morning. I sat and had a coffee with her while she finished some food and drink. We chatted about all the visitors she had last week: in addition to all her usual daily visitors she had a cousin, an old friend from Rotorua and another friend from Christchurch come to see her. This meant she was often having two visitors a day. It is very interesting that no matter how often I go in she tells everyone that she doesn't see me and that I haven't been to see her for 'months and months'.

We then got ready and I took her out. I took her round to see Alison, a friend for morning tea. We took a book which shows pictures of mum throughout her life to show Alison. She enjoyed doing that. We were there for a couple of hours and she also had a couple of little sleeps during this time. She constantly keeps coming up with comments such as 'I want to be part of the family'. I would tell her how she was part of the family and how everyone comes to see her and how we are all doing our best for her - 'yes but... '. I have to work very hard to distract her but she frequently comes back with this sort of comment. She is also constantly saying how she does not like where she lives and wants to live in a home on her own. It is very hard and no matter what I feel very guilty because there is no way I am able to cope with having her at home.

There are times when I do find it difficult to go to see her as I know that I am going to get these comments and it is very wearying.