Fairies and elves

When I was a child I heard a story about elves and a shoemaker. At night the elves came and worked to help the shoemaker and his wife.

I think elves and fairies are at our place. Shoes and socks go missing. It is hard to find two matching shoes or socks. I wake up in the morning and find drawers from the dressing table on the floor with stuff littered around. I find chairs dragged into the middle of the lounge. All sorts of strange things happen.

George swears black and blue that he knows nothing.

Must be the fairies and elves, just wish they would do the housework.

Confusion

I find that when George has been doing things out of routine especially when it is social things, he gets very confused the next day. Mum was the same. It does make things more difficult for me and other caregivers. George becomes very restless and has conversation becomes very disjointed and I have to continuously tell him that I am not sure what he is talking about.

This morning I have found I need to be in the same room or he comes to me ready to go out. This morning I have given him his cup to clean - that is keeping him busy for a while.

I never tell him we are seeing someone or are going somewhere at a future time otherwise I may find him sitting in the car ready to go out.

A busy social week for George

the day after his birthday George went to his club. They had a cake and sang Happy birthday to him. When they presented him with the cake he had tears in his eyes! He felt very special.

The next day we went to the Botanical Gardens to meet one of his old school friends. This friend was visiting from Perth, although he has lived there since the 1970s New Zealand is still where his roots are and he comes back every year and travels around and catches up with old friends, really nice. He also taught me at high school. We had coffee and something to eat. As George prefers to speak to one person on his own I went for a wander around the Gardens some of the time.

The following day George went to his club again. The have noticed how frail he is becoming and don't know how much longer he can keep going there which is another real worry for me.

Friday was Easter Friday. George had a quiet day which he needed. To keep him as contented and 'with it' as possible it is best to keep good routines and not get overtired which can happen very easily.

Yesterday was Saturday and George's youngest son was able to fly down in an airforce plane and arranged to meet George at a coffee shop for an hour before returning to Auckland.  George loved seeing him as it was two years since his last visit to see his Dad. The books I have made for him with photos helps him to remember people he doesn't see for a long time. It was the same with Mum. It is so important to see your family regularly as once they have gone you have lost your opportunity.

Today, Easter Sunday, George was delighted that the Easter Bunny had been and cheerfully ate a lot of chocolate.

The birthday boy

Yesterday all revolved around George.

George woke early and was sitting waiting for me in the lounge. I dealt to his needs first and then got his breakfast ready. We sang happy birthday while he had breakfast and waited for the caregiver who wished him a happy birthday when he came in.

After his shower he opened his present with me and his caregiver. He opened  his card. Both things I had carefully wrapped so that they would be easy to unwrap.

We then waited for the nurse to come to deal with the catheter.

As soon as she had been we went to the Palms Mall so he could go to the Divine Cake shop to choose a cake. When we first entered the Mall the cake shop had gone!! We kept going and found that they had moved to a new shop. George checked out all of the cakes and chose a Tiramisu.

Next we went to Honeys where he had a toasted sandwich and coffee which he loves. The owner gave him a card for two free coffees for this birthday so he felt very special.

It was 30 degrees yesterday so lovely and hot. We had lunch sitting outside and watching the world go by.

On arriving home George found a parcel for him in the letter box. On opening it he found a lovely carved bowl from his oldest friend in Tauranga. He rang him and spent a pleasant half an hour chatting to him.

For tea he wanted to order Indian takeaways which we did (his favourite).

Later the caregiver came to put him into bed and then he had a red wine and watched a favourite movie.

He loved his day, it was all about him.

Today he has gone to his club wearing a silver hat. They will also spoil him there today and have a cake and sing happy birthday to him.

Celebration Days

these are often difficult, especially when you are the only family member to organise the special things for the day. For a long time now I have felt that responsibility for Mum and John although prior to the earthquake it was wonderful having my son and his family here to share in these special times.

Tomorrow is George's birthday. He will be 82. He knew what he was doing 30 years ago marrying a toy girl...

Today I asked him: what is tomorrow?

He thought for a minute and said:

Monday?

Great stuff, I replied as usually he wouldn't have a clue.

I then asked if there anything else tomorrow.

My birthday, he replied.

I couldn't believe it he had remembered. We have mentioned it several times over the last week.

He had no idea how old he would be. I told him and then said that then he would be a wise old man.

'I already am the wise old man' he replied.

Love it.

We are going out in the morning to buy a cake and he wants Indian curry for tea.

I have got him a rugby book and have also made another book about him but it is still being published so it will be something he will enjoy when it comes. It will also be great for him to take when he is in the home.

50 Years 50 Stories: Murna Downs

Published on Feb 15, 2016

Professor in Dementia Studies and Head of the School of Dementia Studies at the University of Bradford, Murna Downs, explains how Dementia affects information processing and the ways research is making a real world impact in care settings. 

Really worth watching

Alzheimer's and driving a car

Yesterday someone reminded me of an aha moment that I had.

6 months before Mum's condition caused her to need to go into a home she was still driving. One morning I was at home working. I heard a loud bang. Mum had backed her car out of her garage and straight through the neigbour's fence. Luckily only the car was hurt. No more work for me that day. I needed to organise for the car and ring various people regarding the accident. I had been noticing Mum's driving was not what it had been but she was only driving short distances to the shop or something, most of the time I took her places.

I suggested to her that this was someone trying to tell her that it was time to stop driving. She was quite happy with that and in fact may have been relieved. Here we have free buses for the over 65s and half price taxis. All worked out until unfortunately well meaning people said to her how awful for her to stop driving and it would mean she would lose her independence!! I couldn't believe it but it was her decision and her money. Sometimes it is important for others to think before making some of these decisions.

I took her out to buy a car. With the salesman she took a test drive and drove really well. That was the last time she ever drove. She asked me to go and get it to bring it home which I did. She tried to drive it but couldn't work out brake and accelerator. I tried to give her some lessons to no avail. I got a man out from AA who frankly looked like a ghost after trying to work with her. He pulled me aside and said she was past it and would never drive again. That is exactly what happened. I was then able to tell other people that we had tried to get her back driving but it was not going to happen. Rather a waste of money but kept everyone happy.

5 months later we had the devastating earthquakes. A few weeks later I was at a class in Brighton. George came in to tell me that thieves had stolen his car from the car park. He had reported it to the police. I checked the car park. At this stage I hadn't know George too had Alzheimer's. We did not get the car back and the insurance company paid out on the claim As with Mum I told him it was sometime telling it was time to stop driving. He accepted that and started using a bus (with couldn't go far with many roads closed).

Six weeks later he came home all excited he had seen his car in another car park where the thieves had brought it back to. I took him down - I didn't actually know that this car park existed. As soon as I saw the car I knew it hadn't been stolen. He had a steering wheel lock on and it hadn't been broken... He swore up hill and down dale that thieves had taken and returned it.

I rang the insurance company to let them know.

A couple of days later I was cleaning out stuff in the garage (part of the earthquake damage) when I heard George's car coming home (I didn't know he had gone out). As he turned the car to go into the garage I heard the tyre on metal! I went over and asked if he had had a prang. No, no said George!!! Utter rubbish, there was a big ding in the front left of the car. I showed it to him but he thought that someone else had done it while he was getting his wine.

Very stressed I was by that time.

Just then the phone rang and it was our insurance broker. I told him what had happened. He asked me and something and I said something or other and he said, 'don't you want that car'. I had told him when it went missing that I was relieved as I was not happy with George's driving so I reiterated that sentiment. He then told me he would send a truck and auction it off and I could keep the payout. So wonderful of him.

That is when I had my aha moment and realised that George too had Alzheimer's.

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.

How the day changes

this weekend our regular caregiver was away. This can make a huge difference depending on who you get.

George came wandering out on Sunday morning with no clothes on and dragging an empty catheter bag along the floor. He had taken it off his leg.

I had to clean him up. Then I had to change the catheter bag. I dressed him in some pyjamas and gave him something to eat and drink. Then I had to start on the cleaning out. Unfortunately George had gone back to bed leaving it soiled and wet. As well as clothes I had sheets, a big blanket and a comforter to wash. Two of those items I had to wash in the bath as they are big and bulky. The floor in the hall and the bedroom was wet so I had to steam clean all of this.

George was waiting for a temporary caregiver to arrive. I kept giving him books to read and giving him more food and drink. Finally at 11.30 I got a ring to say that the caregiver would not be coming as she had had an accident. I then needed to shower and dress him as well. This takes a good hour.

Basically that took me all day.

Yesterday (Monday) morning I went to get George out of bed only to find he had rolled out of bed only to find he had rolled out of bed and was lying on the floor. It took me a good half hour to get him up. I got him to roll onto his front and then get into a crawling position. Then, with the use of a chair and me with my arm under one of his arms we managed to get him up.

It is things like this which continually makes you have to change any plans you may have. You just have to learn to go with the flow. Don't stress and learn what is most important.

Tips and tricksI

George did bounce yesterday and had a good day. A good sleep obviously helped.

Some of the things I have to help me cope with various things

• I keep a jar of peppermints in the car, as soon as he gets in the car George gets himself one
• As he is incontinent he wears incontinence pull-up underwear. He started to take them off in the middle of the night resulting in dreadful messes. Now he wears a onesie to bed. We put it on with the opening down the back so he is unable to take it off. I have tried the normal way but he still took it off. It was trial and error before we worked out this way.
• Because caregivers vary in their ability I have found it easiest to have a big bag prepared for each morning. In this is everything that they need to dress George. By everything I mean everything. It is worth taking the time to do this.
• Keep everything going in a routine as much as possible.
• Try to keep them as independent as possible. I also make sure that the caregivers do this as well. If you don't do it you use it.
• Treat them as an adult and with respect. I have heard people say it is like dealing with a kid and also speaking to them in this way. Both George and Mum pick up on this very quickly and get upset about it.
• Never argue or try to reason with them. I agree with everything.
• Learn patience, you will need it
• Rummage bag - I have a bag with photos and stuff George likes to look at. I often give it to him when he is waiting for a caregiver
• Be very aware of your voice tone. George gets upset if I use a tone that he perceives as annoyed. He tries very hard to do the right thing. I try to keep my tone light and happy even when I don't feel like it. It certainly makes it easier.
• I make sure I have some me time, I regularly meet friends for coffee. This is very necessary otherwise you can become very isolated.
• George enjoys red wine. His caregivers come pretty early to get him ready for the night. As soon as he is in bed I take him a red wine and put on one of his favourite movies. He loves it and enjoys going to bed. He tends to roll over and sleep before the movie ends. I keep the remote so I can turn it off from the door and turn the light off. 
• Attend carer support groups, you will pick up ideas from others. Some will work in your situation while others don't. Usually it is worth trying.
• Remember quality of life for everyone is the main priority.

Downhill slide

It is becoming More and more obvious that George is going downhill. He often seems to bounce back a bit so we shall see.

Yesterday he went to his club and had a lovely day. It was a very hot day. Last night he did not have much of his tea. After tea he slumped in the chair. When it was time to go to bed he found it very difficult to get out of his chair. We had to help him up. He needed to use his walker to slowly be guided to the bedroom. He was totally confused and relieved to get into bed. Once there he enjoyed his wine and a movie.

We shall see what today brings.

Busy, busy, busy

It has been a very busy time just organising things that need doing as well as ensuring that I meet friends for the odd coffee.

We had a very hot month throughout February when George needed more help than usual as he had more times when he was very confused. In addition he encounted more toilet issues which meant that I have been washing up to three loads a day as well as changing the bed very frequently. Also took all the bedding off in his room to wash and air everything. With his incontinence and the catheter the smell of urine can permeate the place! Think I am winning at the moment.

Went to a caregivers group yesterday. A woman I had never seen before was there. Unfortunately this poor woman obviously has mental problems. Her mother has just been put in a home. She feels that her siblings and that staff from the home are all against her. So sad.

There is a lot of literature about siblings not  all being on the same page in these circumstances especially when some do not live in the same place. Often it is the primary caregiver who other siblings criticise. It is important to remember that it is the parent who is the important one and the most important issue is to provide the best quality of life possible. Support that primary caregiver as they really need that support and they also need to know that their efforts are appreciated. I think many of us forget that.

Poor George caught his finger in the car door one day resulting in a black finger nail. He gets very upset, like a child, if he hurts himself. Keep plasters and some TLC handy.