Continence pads

The pads are working well for George. I am sure that these make him feel more secure. I tell him regularly that they do not come off and we have been over (many times) about going to the toilet.

I am happy that soon an old teacher of mine is coming to stay for a few days. Strangely enough he was in George's class at school so he always meets up with George when in Christchurch. He now lives in Perth (has lived in Aussi for many years) but remains a New Zealander and comes back at least once a year and catches up with old friends. It is always nice to see him. Later on the daughter of one of my mother's school friends is coming over to bury the ashes of her parents out at Darfield. She will also stay with me while she is here which will be lovely for me. It is really lovely to have someone to chat to who does not have Alzheimer's. I explained to both of them the situation here but both said it would just be nice to see us, so that was nice.

At the end of last week I met a cousin from Wellington for coffee which was really lovely. Her grandson lives here in Christchurch. She said to me how our mothers would love to know we were meeting up as family meant so much to both of them.

My poor mother does not show a lot of recognition any more. It is there sometimes but it is becoming less frequent. Language is ninety per cent gone with just the odd thing.

Bad day

Yesterday was not an easy day for poor old George. It started off well but...

• He took off the continence pad he had worn to bed, I searched everywhere but was unable to find it. I took all the washing out of the washing machine but could not find it. I did the washing and found that it had been in there but George must have put it inside something so I had not seen it! It takes ages to clean it out of the washing machine
• George decided to go on the bus down to Brighton. He soiled himself and came home! Shower, change and another load of washing. 
• He had a new pad on and then after lunch went to have a nap. I had to go out. When I came home I found that he had taken his trousers, undies (pad and all) and urinated down the hall and over the toilet floor. More washing and steam clean the floors!

Luckily today was fine. He now wears continence pads all the time and I keep reminding him not to remove them. I explain to him it is to help him so it does not embarrass him.

Routine

I find that the easiest way to cope is to have life in a routine. Not that that means much to George as he has no idea what is happening each day nor does he have any idea about what day it is until I tell him. I have learnt not to tell him in advance as he has no idea of time and if I tell him about something tomorrow he thinks it will happen in the near future (i.e. in a few minutes or at least later in the day).

I was speaking to someone else whose father is in the same home as Mum. Before he went into the home she had suggested that he leave his home and live with her. He agreed to this. She was leaving on a 10 day holiday at this time and they decided that he would move in sometime after she returned. She was thinking several weeks or even months however he had a suitcase packed the next day ready and this continued while she was away (she has a lot of other family members here who were going out to check on him daily). As soon as she returned she realised that she needed to have him live with her straight away which he did willingly. Unfortunately he straight away became more and more confused with the unfamiliar surroundings to the point where he needed to go into a home (this was in a really short space of time).

These people need familiar surroundings and routine to help them feel less confused. The world must be a very confusing place for them.

My poor mother continues to deteriorate and it is hard to see much quality of life left for her, it is heart-breaking to watch.

Follow through

One of the things that many people don't realise is the importance of following through on what you promise someone with Alzheimer's. It is a funny disease and you never know what they are going to remember and when they get something into their head they are like a dog with a bone.

Yesterday I went to see Mum and she was awake and alert. She is eating and drinking well but kept pulling at her trouser leg. Massaging helps to keep her calm and settled. I have also found some lovely crystal balls with a lavender smell as air fresheners. I have put a jar of these under her bed to help relax her at night. They have a lovely smell.

I had organised things for George before I left so that he would be OK (I always hope). He was; but the first thing he said to me was that his youngest son had not rung. We had not mentioned it that morning but he had rung the night before to say he would ring at 4. I explained that it was not 4 yet. This was repeated a lot during the afternoon. 4 came and went and I was having to keep going and trying to divert him. I was praying that the phone call would come. Eventually it did at 5 so I was able then to breathe a sigh of relief.

Mum was just the same.

I never tell George anything about where we are going or what is going to happen until not long before the event will take place otherwise he expects it NOW. If something is going to happen in several days time he will get ready for it every day until it happens.

I often think it is things that are really important to them.

Poo day

After the earthquakes we had no power, water, sewage for weeks. People were very inventive in making outside toilets and portaloos were placed everywhere. Poo was very much part of our daily conversations. Stopping people using the inside toilets as they did not understand was a mission. I even had someone go to the toilet before they left our home and we had no water to get rid of the poo in the toilet!! Very nice. Even today the sewage is not good and we have a big tank in our driveway and a poo truck comes each day to empty it - shades of the old long drop toilets.

It is still very much on my mind now.

Luckily George's caregiver came very early this morning as the washing I need to do today is a huge amount and I want to get it done before taking him to his club and going to see Mum.

When I got up this morning I found poo all the way down the hall and all over the toilet floor. I am so pleased I have the steam cleaners. Got the floors cleaning immediately and gathered up clothes I found that were soiled - George was still in bed. He has soiled the bed and a pile of clothes (I think he just continually changes his clothes including 2 pairs of pyjama pants, 4 pairs of underpants, 2 pairs of trousers). Something I have found with those with Alzheimer's is that they are not at all worried by this, they just seem to take it in their stride and show no embarrassment. They do not seem to understand although he does know to go in the toilet (I guess where most of it goes) the fact that it is everywhere else does not worry him.

All of this is not easy for the caregiver let me tell you and of course there is no one you can explain this all to.

P.S. Just got home from visiting Mum. What I did not realise was that George went to the toilet just before we left - steam cleaning toilet floor and hall floor again...

Knowing where family members are

When my father died only my mother and I were in the same city. We had to contact other family members which is not always easy. At the same time there are a lot of other things that you have to start arranging straight away such as an undertaker etc. At the time we had to get the police to try to find my son. They asked me a simple question: what is the licence plate number of his car? I didn't know so then I had to try to find that one out. I admit that the police were fantastic and rang me frequently throughout the day. He was staying in an area out of cell phone range. Eventually he went out and was able to retrieve his voice messages. To be honest it was quite stressful. I guess because of this I do like to know where family members are and how to contact them.

Particularly when I have two to worry about...

Holidays

It is the holiday season over here at the moment and many go away. Up our drive one couple are in India for 6 weeks, another couple have just returned after 10 days in Australia, one family have been staying over on the Peninsula and the other couple left today for a couple of weeks on Australia's West Coast. I guess many people think that for someone like me life is just one big holiday.

For caregivers without others to take over completely holidays as such are often not an option but you can do other things.

1. Go for a walk
2. Go for a swim
3. Find a quiet place to read a book
4. Meet a friend for coffee - I try to do this once a week; the highlight of my week
5. Have a 'nanny nap'
6. Do some gardening
7. Sit quietly, on your own for a while and clear your head
8. Do voluntary work in the community - I am going to be teaching literacy skills to prisoners this year endeavouring to up skill them to enable them to get work on release (and a car licence)

These things do not need to be for long periods (sometimes not always possible) but even 10 minutes out can be helpful.

Make your own list and keep adding to it.

Here we are allocated some days each year for respite care when the Alzheimer's person is taken care of in a rest home. I use these days to get in a couple of weekends to see my grandchildren and also to do some contract work which gives me money as well as a break from dealing with the Alzheimer's - not exactly a r&r I know but it certainly serves two purposes.

Unfortunately caregiver burn out is serious and common so it is important for caregivers to take care of themselves.

Differences between days

Today someone else was going to see Mum but again couldn't because they might be having carpet laid. I am thankful I went as Mum was wide awake and grabbing at things. This is the sort of day where I think she may recognise if someone doesn't go and see her, I am not sure. I took George with me as he hadn't been out for a couple of days and he likes to go out every day if possible - he gets 'stir crazy' otherwise. I am always reticent about taking him as one day it will penetrate that that is where he is headed.

I recognise that I would feel guilty if I didn't go and I feel bad enough that I am not doing a good enough job without adding that to the mix. I certainly envy those with the confidence to know that what they do is right and do not feel this way.

Mum looked at me twice and straight away said my name. She also recognised George and her eyes lit up and she tried to say his name and grasped his hand. He took in some of his cuttings to show her and I tried to tell him she would destroy them; he didn't listen and she did. I massaged her arms, hands, feet and legs with lavender oil which she enjoyed. We looked at photos and videos and I chatted about our life. I read her nursery rhymes which she enjoys. That seems to relax her. It is important to keep things pretty quiet and just go slow and relaxed when dealing with her.

She likes to drink through a straw and will not have a bar of a sipper cup.

I feel so sorry for the caregivers in the Home, they are fantastic but often work under trying conditions; for example the dishwasher in the back lounge has been broken for three weeks and is not yet fixed. These things mean less time spent with the residents.

In addition I had to go to Nurse Maud to get continence pads for George and go to a chemist to price some medication Mum has been put on. The Home will be charging her for these so I am looking to see if they are cheaper somewhere else.

When we returned home I was busy and George:

1. got out rolls of wrapping paper and completely unwrapped them for the cardboard
2. poured himself a wine and didn't turn the tap off resulting in red wine over the floor and bench

Walking stick left behind

Today I went to see mum and she was sound asleep. She had the caregivers trying to get some yoghurt into her for her breakfast. They spent a lot of time and trouble and were certainly not shovelling food into her but it was extremely hard going. I find it quite distressing to see her like this - which is becoming more the norm. I do realise that when another one of the people we have going to see Mum is not able to I do not need to go but it worries me in case it is one of the days when she is awake. These are the days when she really wants and needs the one on one attention

I also realise that this is what will happen to George. I find things extremely confronting and for me it is constant.

When I got home I found George had gone to Brighton and had a coffee and then went to get himself some wine (2 casks) and returned home without his walking stick (once again). I then had to go and retrace his steps and luckily found it. I know that these things do not sound like much but they take a lot of time.

Little things

If you are a caregiver for someone with Alzheimer's you also need to take care of little things for them. I clean out George's razor - I did not realise that he was not doing that until about a year ago when it wouldn't go as it was clogged out. Now I clean it out weekly. He is also not too good at shaving so I tell him the bits he has missed.

Another thing  I need to do regularly is cut his finger and toe nails as he can't do this any longer.

Often these people will sit there waiting for you to do something with them and are not capable of doing much.

I keep the oven turned off at the wall - George can't use that. He can't use the microwave as he can put something in, turn it on but can't open it to get it out again. Similarly he can no longer use the toaster or jug.

He gets pretty confused doing even small things; for example I put his cereal in a bowl in the mornings for him to put the milk in. He now puts in a lot more than he needs and it then goes down the drain. This morning he also put a whole lot in a mug but not to drink - he is not sure why.

It is important to try to keep him independent as possible but it can be a bit hard.

Frustrating

It can get rather frustrating dealing with someone with Alzheimer's. They do what they want, when they want and how they want. We were going out to see friends this morning. George's caregiver had him ready (apart from hair and shoes) before 10. It then took him nearly and hour to get ready so by the time we got there it was nearly lunch time. It is really frustrating when you want to get on with more housework or gardening or whatever. He will not be hurried. He wanted to go but only gets himself ready in his own time. They do not see things from other's points of view nor do they understand what others have to do for them as they just sit and accept that they will be looked after.

George is very slow to figure out what he wants to say and so you need to listen very carefully and fill in the words that he can't find. Mum was the same and they get uptight when you don't get the word for them.

I have heard people say that it is like looking after a small child again but this is totally incorrect and shows someone who has not dealt with these people on an intimate basis for any length of time. You cannot train someone with Alzheimer's to do things i.e. put things away after themselves as they have no idea how to do it. With a child they are learning, with these adults they are losing their memories slowly but surely and along with this comes the knowledge of how to do simple everyday tasks.

Happy New Year to everyone.