Hi there, this is going to be a long post with so many question I apologise in advance.
My mum has had PD related dementia. She and my dad both contracted Covid before xmas and sadly my dad passed away in hospital just after Xmas. At that time mum had been taken in to (a different) hospital and after 8 days was discharged to stay with me. When she came home (and to a degree, before she went in) her PD symptoms worsened so much. We found out that whilst in hospital she wasn’t given her PD medication - which is just ridiculous, but I’ve got bigger fish to fry right now. We put her back on them not knowing that that was also the wrong thing to do, so she’s gone from one shock to the other.
It’s mainly her mouth tremor and confusion that is the worst. Every two hours she will start to shake and become really upset, agitated and uncomfortable. It gives her awful headaches and the noise of it makes her so upset. I try to encourage her to relax, breath, take her mind off it, make her comfortable and eventually she will fall asleep. But this can take up to an hour. Then the whole cycle will start again. We’ve tried a teething ring to chew on and mouth guard. Does anyone have any other ideas? Although it takes a long time to settle her, once she gets to sleep around 10pm she does settle for the night now (with the help of her sleeping tablet).
Obviously living here rather than in her home is confusing for her. She is asking to go home all the time. On top of all this I’m trying to help her understand Dad has passed away. When I first told her, she barely reacted. I have tried to include her in the plans for the funeral (which is tomorrow) but she’s not really interested or understanding. I can only hope she hasn’t processed it and maybe never will. Does anyone have any experience of this? Should I keep pushing forward with the truth or just pretend Dad is away doing something and ‘will be back soon’?
My sisters feel she isn’t up to the funeral and I do agree. The timing of it would mean she’d be at her worst time of day and will feel completely uncomfortable. Not to mention the fact she is only just getting over Covid. But, this is her husband of 55 years, how can she not go? I’ve asked her if she’d like to go and the answer varies depending on if she’s mid ‘wobble’ or not.
I’m so overwhelmed by caring for her, grieving and trying to look at options for her in the future I’m not sure I’m doing what’s best.
Really looking for suggestions of ways to help her tremor firstly and how to process grief.
Hi JJ,
Please accept our condolences on the passing of your father. We’re very sorry to hear things have been so difficult this winter. Our forum community is sure to have some thoughtful life advice and words of support, and to add to that we wanted to be sure you’re aware you can call and speak to a trained helper directly at 0808 800 0303, who will be able to listen and offer some suggestions and local support if necessary. You’re not alone, and there are PWP and carers that are happy to help, even if it just means a friendly chat.
Please accept our best wishes in this difficult time,
Jason
Moderation Team
Hello JJ5
I must be honest and say I felt quite overwhelmed just reading your post so have no idea just how you and your family are coping with it all. I am not sure I can tell you anything practical as it seems at least in part mixed up with your mother’s medication getting messed up and I wouldn’t want to suggest anything that could potentially make things worse - although to be honest I would be hard pushed to suggest anything that would help right now. I would just strongly encourage you to do as Jason has suggested and speak to the helpdesk. I would also say that although I feel I can’t offer much constructive help the forum can at least provide an ear to offload whenever and however you are feeling; if nothing else we can support and care. Hopefully someone on the forum has some ideas and please do ring the helpdesk. My heart goes out to you and your family and I send a huge virtual hug. Good luck and best wishes to you all. You are to be admired and respected for all you are doing given the emotional turmoil, you are doing what you can and that’s all anyone can do.
Hi @JJ5
Sincerest condolences for all you are going through just now. I suspect that I speak for most if not all of those who have read your message, and as articulated by Tot, that it is an awful situation you are in and it is very hard to know what to say that might help at all. Only the most foolhardy would attempt to offer advice unless they really know how to help, but at the same time silence can also be difficult to cope with when you have been brave enough to post your message
I have no doubt that you have everyone’s sympathy but realise that although that could be comforting to a degree, it doesn’t help with the practicalities.
At the risk of stating the obvious, I would urge you to take care of your own physical needs, good food, hydration and, if possible, sleep, and for these to be as much a priority as anything else, since they all impact on your emotional and mental state and ability to cope with stress.
And I know it may sound silly or trivial, especially in your circumstances, but taking some slow, deep breaths every so often can also help a lot. When your “ fight or flight” mechanism is in full spate, as it were, it is extremely hard to think clearly, and deep breathing can help restore a degree of calm and the ability to think what to do next.
You have somehow got through your father’s funeral…I am sure it bore little resemblance to the one you might have had in mind for him at some future Covid free time and I imagine that it hard to bear too. It is all so very hard. You will get through it, though it must feel like you won’t or can’t.
Please let us know how things are going,
Warmest regards
Pippa
Hello I do so hope your sisters and you were able to support each other through your fathers funeral remembering better times. What a sad stressful time we all find ourselves in through this pandemic. I can re-iterate pippa’s comments and also say the help desk is very good please give them a ring. Despite Parkinson’s U.K. fighting for a country wide hospital agreement that Parkinson’s medication is given and imperatively given on time my husbands hospital admissions have always proved problematic and not happened. He was in hospital for surgery the first week of November 2019 and including the surgery healing time is only now feeling his Parkinson’s is as good as can be with medication back on time.
Also the utter stress your Mum has gone through in contracting Covid being hospitalised separately to your father will no doubt have had an impact on her Parkinson’s.
Hopefully with medical input reviewing her medication she will be more settled enabling you to take stock and grieve the loss of your father. Very Best Wishes Jane
Gosh, what a situation. There is not a lot I can add to the other replies, but I feel for you. Try to keep a bit of yourself in reserve somehow through this awful time; try to find time to do something that’s just for yourself. Easy to say, hard to do, I know. And don’t be afraid to call on help from whatever quarter is willing to provide it.
I can only add that having seen a specialist neurological ward fail to give PD medication on time to my partner, despite its insistence that we provide the tablets and a timetable for them on arrival, I am not surprised by your dreadful situation. In the end I was arriving in the ward at 8am and leaving at 10pm to ensure the tablets were given. Sometimes this required considerable debate with whoever was on duty; other nurses were happy to let me get on with it. We have a neighbour with PD who went into hospital and didn’t get the right medication and came home in a very confused state.
One of my biggest fears is my partner catching covid, because I am certain that overrun staff will not be handing out sinemet at two-hour intervals, never mind the four other meds consumed on a daily basis. Since the start of the pandemic, we are seeing nobody, not our kids or grandkids, and have only left the house an handful of times, for fear of infection. And of course, while less vulnerable people locally have been receiving food parcels and have been vaccinated, my partner does not qualify, as PD does not appear to count…
I digress. I don’t know what to say that will make things even remotely better. But your situation could happen to any of us and I fully empathise. I wish you well.
Hi @JJ5 I too have nothing practical to offer (I am at the start of my PD journey), but I just wanted to say I have read your post and offer my sympathies for the dreadful situation you and your sisters have found yourself in. I hope you managed to give your dad as good a send off as you could. Have you tried contacting your mum’s Parkinson’s Nurse - she should have one.
Best wishes
Hi Pcyc and tiredcarer, apologies I haven’t had a chance to get back on here since I started asking for advice. Mum is much better, we’ve got on top of her meds and after about 2 months she finally seems to be getting back to a semblance of what she was. Obviously we now have other issues to deal with (which is why I’m back here and will be asking about in a separate post) but we’re getting there.
Yes we did try her Parkinson’s nurse who was sympathetic and listened, but ultimately couldn’t do much. We’ve pretty much muddled by on our own.
