Relieving caregivers

My regular caregiver is away at present. The relieving ones are of varying expertise. The agency gives them no knowledge about George and his needs.

I decided to write the instructions on a sheet which is then laminated.

I am finding this is a great idea and the carers appreciate it.

Unfortunately George is continuing the downward spiral. 

If the repairs had been able to be done a year ago when I was ready it would be different but unfortunately I cannot see him going into a home for 6 months and being able to come out. So sad....

Road works

Our earthquakes started over five and a half years ago. Our roads have not improved much since then. It is still a nightmare trying to find your way around. Often you find that you get to road you want to go down and blow me it is closed... You follow the signs for the detour and often find yourself in an unfamiliar place. Great.

There is also a lot of associated dust with all of this, no wonder there are a lot of people here with respiratory problems, including me. Since the earthquakes I have developed asthma and have breathing difficulties. As the doctor said a certain amount is also caused by stress - something all caregivers face continuously.

The parts they haven't started to repair still need to be treated with care as you tend to go up and down as you travel along. Rather like being on a Rocking Horse.

At the moment I am also trying to pack stuff here ready to move out and finally get our place renovated and repaired. A very costly exercise although the insurance will pay some of it.

It does create problems when I am trying to get George somewhere. I try to leave a good 15 to 30 minutes earlier to allow for the unknown. However I am also reliant on the caregivers being punctual which doesn't always happen. Again I have to cross my fingers and toes and pray.

My heart goes out to the people in Japan.

Caregivers support group

I have been going to a caregivers support group once a month. I find it fascinating at how different how different each person with Alzheimer's is as the disease progresses.

Some with early onset Alzheimer's still have young children living in the home. This creates a lot of problems and the caregiver can feel very pulled in who needs their support at any given time. Children also need to be children and do things other kids do. Several caregivers of those caring for someone with early onset report how they are often hit and yelled at. They discuss very aggressive behaviours and yet when in respite care they are still at rest home level. I listen and think how lucky I am that neither John nor Mum have been aggressive.

Some find that the person with Alzheimer's does not want other family members visiting. This effectively cuts support for the carer, a real worry as people can become more and more isolated.

I am always impressed at how well carers cope and adapt to changing situations. It is often overlooked by others. If you know someone who is a carer don't criticize or offer 'helpful' advice. If you can support them by staying over for a night or two while the carer goes away. Take over a prepared meal, or take the person with Alzheimer's for the day ( or an afternoon ). Try to be on the same page as them - don't give them more stress, they have enough to cope with.

The big thing for carers is to make sure they look after themselves too.

Research

It is great to know that people are researching Alzheimer's disease all the time (so far without a lot of success).

Here in New Zealand a blood test is being developed that will allow people to find out whether they are likely to get Alzheimer's in the future. This is from The Press (in Christchurch) on April 7 2016.

 

They point out the pros and cons that will arise with this knowledge. An interesting dilemma.

 

Frankly I am not sure how I would react but I know I don't want to go through what George is going through and what my mother went through. However during this time there may also be breakthroughs in slowing down the disease.

The toys

Another story I read, as a child, was how toys came alive when everyone was asleep.

I often think George must have read this story and decided to act it out at night. Maybe thinking he is a toy.

I often find clothes and shoes in the bed when I go to make it in the morning.

George mucks around in bed. This morning I found he had pulled the catheter bag off his leg and then the bag had come separated from the catheter.

Result: a wet bed.

I usually have a stocking over it to try to keep it in place. Unfortunately some caregivers forget to put it back on and this was the result. Sheets get changed here very regularly.

Frail

George is becoming more and more frail. His legs are very thin and do not look strong enough to hold him up.

On Friday we visited a friend and then went into town to the library in there.

On the way out of the library we went to the car and I turned around. George's legs buckled beneath him and he went down. Luckily it wasn't a fall but just went down. He was not hurt although he got a shock, as I did. A lovely man rushed over and the two of us got him up and into the car. On returning home George had a long sleep and felt much better when he woke up.

When he is going a distance he uses a walker but for shorter distance he uses a walking stick. The walker will need to be used more and more.

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.