Advice would be so welcomed please ...

Living with Parkinson's Carers, friends and family
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My sister told me last year that she had been diagnosed with Parkinson’s and Lewy Body Dementia. I understand that the Lewy Body was confirmed by a scan. She’s not on any medication, because she believes they have it wrong. We live miles 160 miles apart and as I’m unwell with my heart, I can’t get down to see her.

We talk every day and some days are just fine, but then on another day quite the reverse. She has opened up about being muddled and that must have taken some doing. She is clearly aware.

I did make contact with one of her children this time last year, just letting them know that his parents could do with some help, perhaps live closer to one of them. He/they hardly see them as they live miles away and when they do, it’s only for a short while. Sadly, the reply was not as expected and so I backed-off. I feel I need to let them know (again), very gently of course that their parents need some support and go a step further, re the dementia issue. Dad is having a huge problem in that direction as well.

Outside support is not an option, as they have said so. I imagine this is a typical reaction. Perhaps I would feel the same … I guess so.

I fear I will be seen as an interfering Aunt and am at a loss what to do. I would be grateful for any suggestions please. Ridiculous time of night to do this, but I know I won’t sleep for worry. Thank you so much.

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Hi Betty1
Welcome, and you will be supported here i am sure. I see your dilemma, Not all adult children can support because distance. Or struggle with the thought of caring for elderly parents when they are unwell. Reading between the lines , it appears your Sisters children did not take kindly to having their eyes opened about the needs of their parents. Plus your sister sounds like she is not ready to accept the situation, she will when the timings right for her.
So no think of it as backing off, you are just re grouping! Their is helpful information all over this site . And direct contact too. With more information you will hopefully find a way to support them.
Do not for get to look after yourself and thoughts at this time.
Esme

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Hi Esme
Thank you very much for taking the trouble to reply.

I’m sure you are right and I’ve been fretting. I understand now that the two are visiting in a few weeks time and so I will just back off. My sister’s view is that they have busy lives and so I shall continue to do what I can, talking them through instructions to sort things over the phone. I will also hopefully visit in the Spring and do some jobs for them.

I browsed the other night and it is helpful to learn from others, it also made me realise from other threads, that it probably started 3 years ago.

Thank you again for being so kind. You take care too.
Kindest regards, Betty1.

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Hello Betty1
Have just picked up on your post and see that Esme has replied. I have to say I pretty much agree with her wise words. I appreciate you are worried but until either your sister or her children are prepared to accept she needs help you could repeat it as often as you like and chances are it will fall on deaf ears. The other thing that came to mind, and this is no criticism just an observation based on experience, but you mentioned you live some distance away. Your view of the reality of the situation may be a bit distorted because all you have to go on is what your sister tells you and how you interpret that, you have not seen her and how she is managing for yourself. I have more than once been in situations where the son or daughter lives some distance away, sometimes even abroad, and they more come for an infrequent visit and are shocked by what they see. They reality though is that although it may look bad, Mum or Dad are actually managing quite well; it’s because they see all the deterioration in one go - a bit like it’s a shock to see how tall a child has become when you’ve not seen them for six months. I’m not saying you are wrong, only that it is easy to assume something that isn’t actually so.
Esme is right, you need to look after yourself too if you are going to continue supporting your sister. You’ll be no good to her if you become ill. In your shoes I would try to keep the lines of communication open but not make a big thing of your feeling that she needs more help and take a softly softly approach if you mention it.
You’re in a difficult situation and the reason you’re finding it hard is because you care and as I frequently say here on the forum you can only do the best you can - and you are doing that as I am sure your sister knows.
Do let us know how things are going.
Tot

2 Likes
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Hello Tot

Thank you most kindly. I’m sorry for not replying, but I’ve not accessed the site for a bit.

The two children are visiting this weekend. I guess I won’t know much, as she probably won’t tell me. It’s given me a rest, as I’m struggling to cope in trying to guide them how to fix things over the phone. My heart’s bad and I’m struggling with anti-social behaviour from neighbours.

I am hoping that she will ask them to do the couple of things that’s really important, but I guess not. I’m finding that she has good days and bad days, eg just over a week ago she exclaimed “Your’e never 70!”. She also couldn’t remember her age, just the year she was born, when she was asked at the chemist. I think she had gone there to ask about the flu injection or something and she was asked her age.

My brother in law has early dementia - hers is Lewy Body. I must confess that there are days when all seems well/relatively so and I’m wondering if the bad days are, when she’s so constipated. She’s fallen, he’s fallen (though he didn’t sustain a fracture - it was at home), and in the main she’s looking after her husband as well as herself.

As I say, some days are relatively OK and I know this because of what she tells me. As there are no grandchildren around, I’m guessing the children themselves will be able to focus on their parents’ needs - observe/see what’s what. She will of course tell them that everything is fine and that they are managing, but I know from what she tells me they aren’t. In which case Tot, there is nothing I can do.

I do try to put myself in her situation and perhaps I would do the same … not wishing to give cause for concern/disrupting the lives of my children as their lives are busy, etc etc.

There are so many of us that find our lives completely changed/changing as we get older … we couldn’t see it when we were young.

I worked in Geriatrics after I qualified as a nurse in the 70’s and I loved every day of it. I can see my Parkinson’s patients, patients with dementia to this day … you never forget. What you don’t see of course is ‘life’ outside the hospital ward. You hear about it, meet the relatives and there it stops.

Sorry for rambling, Tot. Do take care of yourself and have a good Christmas. And to everyone, who might read this reply/post …
Betty1

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Hello Betty1
You can ramble away as much as you need, that is what the forum is for and if it helps to get it off your chest so you feel a little better then you just carry on.

For what it’s worth, it’s understandable that you worry about your sister given your circumstances but I think you are doing the best you can and that’s all you can do.

Look after yourself - your health is important too - and I hope you have a lovely Christmas.
Tot