Bad sort of day

[Courgettegrower]

My husband was diagnosed in 2013 with probable MSA and we had many of the following years with minimal impact. Plenty of river cruises with friends and some holidays on our own and with family. 2018 things began to get serious so we moved to a bungalow from a ridiculously large family home and put in various helpful things, walk-in shower, big doorways etc.

All this time I have assumed Ian was aware of his situation. Today I wonder. He talked about getting different wheelchair that he could use manually, he couldn’t manage one some time ago! He also asked me to take him to the loo, we need two carers and a hoist to move him now! I am wondering if he is still in denial about his true situation and wondered if other carers have dealt with this situation and how.

Jenny

[Yanno]

Hello JennySo sorry you've had a bad day; some days just seem to be like that. As you know Jackie was diagnosed just a little later than Ian and thankfully we were already in a large bungalow having luckily never found the 'right house' in the village we live in and love.

Jackie shows some of the elements that your Ian does in two ways. Firstly she started hallucinating about a year ago. She is convinced that her mother or sister were with her (when they weren't!). Sometimes she repeats things that they have said to her. Jill Lyons (MSAT specialist nurse) gave me some excellent advice in that for the person who is hallucinating it's real and to simply to say it's rubbish will not help. I gently remind Jax that her mother doesn't leave her house now and that we perhaps just visited her that morning. Jackie accepts that her mind has made it all up and we will have a laugh at her latest invention!

The second thing that really worried me, is she started to think she could walk, or do things herself that she hasn't been able to do for some time. A companion was with her some weeks ago and Jax suggested that with 'just a little help' she could go to the loo! Thankfully I arrived home to remind her that, sadly, she needs considerably more than 'just a little help' from me.

I treat all these episodes with compassion, humour and some pleasure that Jackie is still trying to do things, even if we all know it's impossible. Hopefully your Ian will see the difficulty in what he is asking for and with luck you'll be able to have a laugh about it soon.

Take care, Ian

[TK-67]

So sorry it's tough, my mum will often make reference to 'getting better', but yesterday she asked me to remind her what her condition was called and she seems to accept her deterioration. She's at the point where there is a lot of confusion and mixing her 'dream world' from reality. As with so many every day is very different. We're just very gentle and consistent in how we talk about the help she needs and why we worry about falls etc when she 'forgets' how bad her mobility is.

[Hellebelle]

Hi,

This does seem quite common. I remember my mum telling me about a number of incidents that saw dad getting out of his chair and walking a few steps at a time when he was no longer able to mobilise on his own. On some occasions he made it to the TV to try to turn it on and on others he fell over and luckily did not break any bones. This happened when my mum visited the bathroom and was therefore out of sight. Each time, he looked really puzzled when my mum showed her shock at what he was doing.

Dad also did this when he was in hospital and tried to get out of bed when he was unable to do do. Eventually, he had a bed sensor and chair sensor fitted. This alerted us to any attempt. It wasn't a road we wanted to go down but it became more frequent and dad was injured quite badly when he fell once at home.

I think Ian's approach is great. Showing compassion and understanding is the best approach however shocking/frustration etc it can be. We all have this natural compulsion to move, it is in our DNA and it must be so strange and frustrating not to be able to do so.

Sending you lots of love

Helen xx

[TK-67 in reply to Hellebelle]

very familiar, we have a lot of issues with mum at the moment doing things she really shouldn't physically be able to do! She's cared for in a nursing home and it's very challenging that despite every precaution she falls so much. However she is apparently super human and avoids any injury! It's our biggest worry that she will break something but she does seem to have worked out how to fall safely.

[FredaE]

the thing which did for m husnabd was the belief that he cold help me by getting himself ready for bed. He fell abd broke his collarbone, ending up in hospital

ihad just left the room for a minute or two. i am afraid it was not his first mistake or his last.

[Hellebelle in reply to FredaE]

Mum felt very guilty when dad injured himself after a fall but you you can't be with the person 24/7. It's very hard for carers.