Dementia and Parkinson's

[Breathmiller]

I'm not sure why I'm posting this, just having a difficult day and would like some support from others who know how hard this is.

My mum is 74 and was diagnosed with Parkinsons 5 years ago just before her 70th birthday. Previously she was a fit and healthy woman. Danced, hill walked, healthy active lifestyle.

She was at home with my step dad and they were managing.

But then she took a real dip and ended up in hospital in January fairly ill. She ended up with flu in there.

Sadly she just kept deteriorating and she was moved into a nursing home at the beginning of lockdown.

She now has Parkinsons related dementia and this has been devastating to see it take over as quickly as it has.
I don't think it helped that we couldn't see the home, or help her move in or visit her. She can't understand why we don't visit. In clearer moments when she is coherent in her speech she has asked why we have all abandoned her. It makes me weep.

We were managing facetime but she cant do that anymore. I had a 5 minute phone call with her yesterday and it is just so sad. She doesn't understand much and makes no sense at all. I know she gets very upset and distressed at times too.

My step dad was allowed his first visit this week outside and said it was awful to see how much she had deteriorated in such a short time. It's only 1 visitor so i can't go and see her yet.
She is just hunched over in a wheelchair, completely folded in and she can no longer walk. She had no eye contact and didn't make any coherent conversation. Just mumbling and rambling he said. It's just all so heartbreaking and I worry about her future. I can't bear to think how bad its going to get for her and perhaps best not to know how bad it will get.

Sorry, that was long and a bit woeful. As I say just having a bad day about it all. I'm normally coping with it better than this.

I couldn't read and not post..sounds like you are a little bit further down the road than us.

Mum is 64 and was diagnosed with parkinsons about 8 years ago. Aside from the constant pain, fall and general deterioration from parkinsons. Dementia, possibly altzhemiers has set in over the last year but the last few months have seen a big deterioration, the confusion, not knowing where she is, who she is, wanting to go home when she is home, awful hallucinations from her meds and lack of mobility is bloody awful.

Stepdad is currently trying to cope and there may be a new altzhemiers drug in a couple of weeks that she can try but if that fails I imagine we will be looking for a care home in the not too distant future which seems criminal at 64.

The future is an unbearable thought isnt it, especially when things seem to progress so rapidly. My sister and I have decided that all we will be able to do is love her, make sure she is a happy as can be and be there. It must have been so hard for you all these last few months, but it sounds like you are trying to do just that for your mum.

Sending you a massive hug and i know there is not much traffic round these parts but here if you need to unload.

maureen

Oh I am so sorry that you are going through this too. And your mum is so so young.

You are right, all we can do is love them and look after them as well as we can. I try to meet my mum where she is, try to inhabit her mind and go with it sometimes but that is getting harder and harder.

I think that's what has been so hard about lockdown, that i have been made redundant from caring for her.
When she was in the community hospital I would go for the day and do her nails, massage her hands - she hates having sticky hands. Massage her legs which really helped her tremor. And just sit with her, human touch and companionship can go a long way. But I can't do anything from a distance.

I do hope that the new drug helps your mum. It is a balance of medication isn't it? My mum is tiny, like 6 stone at times and doesn't react well to a lot of medication as it makes her sick and stop eating so we have to be really careful as she hasn't got much to lose.

Thank you so much for replying. I am sorry that you and your family are going through this but it helpful to hear others stories too.

Sending you a big hug back.

I saw on the news today that care home visits are to resume in England and thought of you. I hope you are in England and that applies to you and you can see your mum.
I'm sure just seeing you and hearing your voice will perk her up.

Parkinsons is all consuming isn't, it has been with mum and the stress on the whole family can be really tough, it's so hard to watch someone you love suffer like that and no that there is no miracle cure or happy ending.

The meds are really tricky aren't they, we have learnt that just 15 minutes out or eating at the wrong time can make a massive difference to how mum is. It must be worrying with your mum being so slight if they make her poorly. I know my mum can sometimes go all day and forget to eat or drink so we have to monitor that really closely.

It is all such a balancing act.

That was so kind of you to think of me.
We are in Scotland and have even taken a step back as my step dad called me last night to say that the visiting for him has been cancelled as one of the staff has tested positive. So he only got one of his two visits and now the second has been cancelled.

I do hope thay change back again soon. Even if I can't get in I was pleased that he could. He has really struggled with it all.

Also one of the hard things has been sorting out all the finances to pay for the home, I'm so glad my mum had the foresight to sort out power of attorney before she got ill. That was fairly straight forward when she lost capacity.

Yes, eating seems to be something that makes a difference. Last year my mum was advised to make sure she took her medication half an hour (or more I can't quite remember) before meals. And she felt it did make a difference. I'm not sure that they do it all the time at the home though.

Sorry to hear that your mum is struggling with her food intake, it must be such a worry for you. My mum completely lost her appetite for a few years and it was a terrible worry. But bizarrely when she went into hospital and started to deteriorate she eats everything. Puddings every day which was something she would never do. It amused all of us to see my very food conscious (bordering on anorexic tendencies we now think) wolfing down sticky toffee pudding and custard after every meal.