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.