Listen to the family

Carers, and other family members who are actually there on the ground floor, are really the only people who actually know how best to care for someone who has Alzheimer's. If Those working in the Health Sector remember this it helps to ensure the best quality of life.

When George first went into the home he wore a onesie at night. We also put it on back the front. This was because George kept taking clothes off during the night. Sometimes he would put other clothes on. As he is incontinent he wears pull-ups. He would take these off. This could result in an awful mess. Using the back the front onesie stopped this as he couldn't open it. It worked really well.

In the home they told me that George didn't do this any more and asked me to buy him some pyjamas which I did. For some time all has been well, but guess what? He is now back to taking everything off at nights. This started again while he had Shingles and has continued. I didn't say anything figuring they would work it out. This morning I decided to suggest that to them. With his lack of appetite it hasn't been too bad for them but George is obviously going to keep doing this. Always amazes me how people really are not good as problem solvers. If they had listened to me in the first place the problem wouldn't have arisen.  I must be honest and say I did think 'better them than me'.

I think those of us who are the carers have to be fantastic problem solvers. You also need to think on your feet as you need to monitor everything all the time and change quickly if you need to.

Lunch

Took George out for lunch yesterday. We met some friends there. He knew who they were although not their names. He asked me what my christian name was as we walked across the road. He knows who I am but not necessarily my name. He rarely used my name and always had pet names for me. He rarely remembers names now although he recognises people.

When I arrived at the home the staff were just getting his things back in the drawers. He is regularly taking everything out and taking them all over the place. In there, there are not the number of clothes I deal with here on a daily basis.

He told our friends about going walkabout. He does remember that little episode but is not at all worried about it but sees it as an adventure. This time he said he was going to see the editor of the Press.

When George wants to go he starts to get restless. That is when I took him and we went back to the home. No problems, no talk of home etc.

He enjoyed going out.

Where am I?

There are times when I really wonder about just what George knows. There are times when I may say to him that tea is on the table, he gets up and is not sure where to go. I just quietly tell him 'over this way'. I use a lot of hand signals. I notice when he goes down the hall he checks in each doorway to find his room. It seems to be best to be in a smaller space rather then a bigger one but then he also needs the room for all his stuff, no win situation really. Patience is needed and I don't let him think anything is wrong even when I feel really frustrated. My life is easier if he doesn't feel frustrated.

I do feel so sorry for these people as their disease progresses. It must be really scary for them at times. George is pretty happy because he thinks everything he does is right.

Don't get me wrong as some days he knows exactly where everything is.

He often puts clothes on. I have given up trying to stop this behaviour. Some nights he will have on two pairs of long pants and three shirts. When the caregiver gets him ready for bed I spirit the extra clothes away. This tends to happen when I am trying to do something else.

Don't sweat the small stuff.

The green hat

It is St Patrick's Day. George loves to wear a big green hat on St Patrick's Day. Last night he had it on the top of his drawers. This morning, first thing, he started going on that his hat was missing.

I then had  to get him organised and settled and then embark on a green hat hunt. Finally found it carefully placed in the back of a wardrobe. He is so happy as Ne wants to wear it to his club today. He obviously got up during the night and moved it. This is a regular occurrence and why so much goes missing. We blame it on 'those bloody fairies'.

All's well that ends well.

I find it easiest to do what he wants to keep him happy and relaxed.

Clothes

Both Mum and George have had a fascination with clothes. With both of them they experienced difficulties with choosing appropriate clothes and with taking them on and off.

One of my sisters labelled each of the drawers for Mum's clothes in her bedroom. I did the same for George. It did not work for long. George spends a lot of time pulling stuff out of wardrobes and drawers. Keeping his clothes in the bedroom does not work. I can then find a pile of shoes but not one pair, only singles. I now have the main lot of clothes he wears in the dining room where I can keep an eye on them as much as possible. This gives him the stuff in the bedroom to rummage through.

In the renovations I have a large walk in cupboard with shelves, which I will be able to lock. We had to do the same with Mum in the home. We locked her wardrobe but left old clothes in the wardrobe for her to rummage around in.

They believe everything belongs to them. George tries to take my jeans or jerseys. One day I found him with my jeans around his knees! I have to try to hide my clothes from him.

Many of the residents in the homes take stuff from each other's rooms. Families often get upset about this but really what they need to realise is that their loved one will be doing it too.

Hide and seek

George thinks everything is his! Today he brought home a magazine the cafe ( where I took him for coffee ) has for patrons to read. I didn't realise until we got home. I will pop it back on Monday as it won't be open tomorrow being Easter Sunday.

I find that I have to try to hide so much if I want to be able to lay my hands on it again. Nothing is sacred. I tried putting stuff in boxes but he just takes things out if those. It is a real problem as I need him to wear particular stuff for different activities, for example he has special shoes for walking and although he has many pairs of shoes it is often difficult to actually find a pair. I find them all over the place - behind couches, TV, chair, in the bed, in the garage, just any random place. Unfortunately these are always singles and never a pair. You actually get to a point when you feel very triumphant when you find a pair. I have to get everything ready for each caregiver which also involves shoes! If I am not careful some things, if not all things go walkabout. I then find these things scattered around the place, sometimes I find them over several days. It also applies to my clothes - I have found George putting ( or trying to ) my clothes including jeans which he got up to his knees and then got stuck.

Being organised

I try to empty George's night bag while he is still asleep first thing in the morning which is a help if he takes the two bags apart.

Something which can be very irritating is when George wakes up during the night and goes walk about. Each night I leave out all the clothes ready for the next day so these are ready for the caregiver in the morning. Unfortunately Goerge will take some of these and put them on over his onesie ( more washing results). I often then need to get more clothes ready in the morning. I am running out of places where to hide thing. It is all pretty random making it difficult to plan around, for example other nights he will pull a whole lot of stuff out of the wardrobe, put some on the floor and put some on for the layered look then back to bed. I have also found him trying to put my clothes on!

With Mum being in a home it has cost me a lot over the last four years and now I need to try to recoup. I have a small contract which pays minimum but every little helps. It also gets me out and gives me something different to do.

Hide and seek

You know about the sox fairy who keeps taking one of every pair? We have these ones and currently are down to two pairs of matching sox. Well we have shoe fairies too - yesterday morning six single shoes. Still have not found all of them but found one wrapped in the sheets at the end of the bed. We have a shirt fairy and at the moment I am searching for three shirts that she has. There is no point in asking George as he has no idea that he has had any these things.

The only way I can be sure of knowing where something is, is to hide it ( and remember where I have put it). We do not have a lot of space for hiding and no area is considered off limits to George. It actually takes a lot of time to find the stuff especially if a caregiver is waiting for you to get it. This morning I had all George's clothes ready for the day. His caregiver then told me that I hadn't given him any sox. I knew I had but started looking for them in case they had gone walkabout. They had; onto George's feet.

Routines being reestablihed

George had his first day, since Xmas, back at his club. He really enjoys this. While he is there I go to visit Mum. It always brings home to me the journey George is on.

He is still talking about his FaceTime talk from Sunday, several days ago. He is so thrilled to be able to be part of his son's life. He talked to all the members of the family, including the bird and told them all about our cat, Fluffy Bum. This interaction and regular contact will help with his remembering them. This is so important as it really struck me how he no longer recognised many of the people he used to work with - this was at a funeral where he no idea who most of his former colleagues were. Of course it also means his son is well aware of his father's progression in a more meaningful way than this blog can provide.

I had a lovely email from the son telling me how much his father meant to him when he was growing up as well as how much it meant to him to be able to have this regular contact with George and to be able to share his life with George. I read this to George last night and he was so thrilled. He is looking forward to Sunday, I see this as being a highlight of his week. So lovely and it shows George  how his son does care about him and wants him to be part of their lives.

George was pretty tired last night. It takes me a good half an hour to get him ready each evening. At this point I try not to do everything for him but try to encourage him to do as much as he can. I will tell him to take off his shoes which he will then do. This continues for each piece of clothing. He can only deal with one at a time, for example I can't say to take off his shoes and socks. Also he no longer  knows names of all articles of clothing. Of course I also need to deal with the catheter and put his night bag on. Once in bed comes a familiar 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!

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.

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.

Little things

Something that most people would not realise are all the little things that a career needs to do and to think about including cleaning a razor - I had never taken one apart to clean but I think I am now pretty good at it. Another thing I need to do is to cut his finger and toe nails. George no longer copes with lots of things like this which I have to do. Luckily he has someone coming five days a week for a showere and to dress him but I undress him each day and put his onesie on which is not the easiest task in the world and takes me some time. Obviously I dress him two mornings a week.

Catching up

I had a wonderful time when we had a friend to stay for a few days. It is so nice to have someone 'normal' to talk to. We went out quite a bit seeing the impact of the earthquake and having lunches. We also did a bit of shopping. I guess it is like a young mother but usually they have another adult round to speak to while I have no one.

Today was a public holiday. George is quite happy going to sleep or pulling everything out of cupboards! He also expects to be fed regularly...

Today I suggested that he play some quoits. That is something he likes to do. I have also saved cans and bought some balls from the $2 shop so he can play skittles. He won't do these things for long but at least it is something.

The new lady who takes him out on Wednesday afternoons (at 2 pm) is taking him for walks which is great for him. She is German and speaks with a thick accent but is lovely.

I find that I am constantly cleaning up after George - picking things up and putting them away, often the same thing several times. It is very time consuming. He has out about 4 pairs of shoes and 2 pairs of slippers in the lounge at the moment but always puts on two different ones.

Life goes on

I haven't posted for a while due to many things happening.

George is sitting reading the paper. I told him this morning that the paper was there at the gate. He got his walking stick and walked outside and then came back. I thought that he had forgotten what he was doing but no

he had forgotten to wear a hat!! He wears a hat ALL the time except when he is asleep - he is the same with gloves. We will be going out and I will have him in the car and then he will get out to go and get his gloves. Unfortunately he is unable to keep any one pair together and so I find them all over the place. For times when I am in a great hurry I keep a pair in the garage!!

Yesterday was one of the days I go to visit my mother. Before I leave I like to get the washing done and out, including changing the bed. Yesterday George slept in so as soon as he got up I stripped the bed to get the linen in the wash (earlier I had done another load of washing - as I do most days). I had already got George's breakfast and pills out ready for him. He came out wearing; one pyjama top, two T shirts, two shirts, one pair of undies, one pair of pyjama pants, two pairs of trousers....

Learn patience when caregiving anyone with this disease.

Clothes

Poor George has no idea about what is appropriate in the line of clothes.

The other night, while I was getting tea, he went into the bedroom and pulled out a lot of clothes and came out wearing:

• two T-shirts
• three shirts
• a pair of trousers inside out
• his old school cap

This is taking the layered look a bit far.

Trying to keep this place tidy

Over the last fortnight I have been flat out getting George to all the places he wants to go, going to see Mum and trying to get parcels away for Xmas. Unfortunately one of the people who go to see mum has not been in for a fortnight so I have gone to see her on those days too.

The house and gardens do not get done properly. Today I thought I would do that and stay home!! George likes to go out every day for a  coffee and something to eat. When he is like this it is easier to do it although that takes one to two hours. We went down this morning and I have been trying to put things away. He continually gets more out. I often feel like I am going round in circles.

I had clothes ready for the new week yesterday. I now find two clean shirts are gone!! He put them both on as pyjama shirts last night. I have tidied out his wardrobe and drawers again today and he had two pyjama shirts hanging up as shirts. I do put his pyjamas on but that does not mean he will stay in those each night.

Sleeping and eating

Although George is not to the same point as Mum he spends a lot of time eating and sleeping.

I need to get him breakfast, morning tea, lunch, afternoon tea and tea. He will also look around for supper.

He often goes to sleep on the couch.

This morning when he got up he had on, a hat, two jerseys (inside out) and a pair of undies. He came into the lounge looking for socks. I just leave him and it gets sorted when he has his shower. Instead of saying anything I get his medication, coffee and breakfast.

Don't sweat the little stuff.

The layered look

This morning George was up at 4.30 (before that as he woke me then). He had clothes on over his pyjamas. It is warm here. He had on long john, thermal underwear, under his pyjamas. Over the top of his pyjamas he had on one pair of pants and two shirts, including one flannelette one. I left it so that the caregiver could use some of the clothes when he had had a shower.

I put his cornflakes in a bowl. He poured hot water over them resulting in some awful looking stuff. I got him to get the milk out of the fridge and got him some more cornflakes.

Dressing

During the weekend George does not have any come in to help him dressing etc. this morning he woke up late and came out wearing his pyjama pants with a pair of shorts over the top! I had to go to see Mum so I got his breakfast, put on a DVD for him to watch while I was away.

George eats a lot all day. I also left him two plates of biscuits and cake as well as a large cake of chocolate. He had eaten all of it by the time I got home. I then got him lunch...

I have asked people who deal with those with Alzheimer's if they find the hot weather effects them more and they have all said that it certainly does so it is not just my imagination that George is more confused.