I’m new to the forum and hope I can just pop in and out if that’s alright.
My husband has severe Parkinsons and has gone down hill badly in the last year. He can’t walk unaided and is suffering badly with Bradykenisia . It can take ages to get him to bed.
I really just want to talk to someone who understands now and again. I feel very isolated even though I have family nearby. All they see is my husband sitting in a chair, nice and clean, well fed and smiling. They don’t know and we don’t want them to know the half of it. They have their own lives to lead. Thank you for listening.
I’m new to the forum and hope I can just pop in and out if that’s alright.
Hi Molly welcome I totally understand where you are coming from but having been through exactly the same scenario only with a parent I would urge you to try and include family and or close friends as you will almost certainly at some point hit the wall you have to take care of yourself or you will end up in a big hole you made a good start by joining the forum you can find me on insomnia thread and contact me any time you want to if I can help I will gladly I now have pd myself
Welcome to the forum - and sorry to hear what you are going through. As someone who has mild PD and cares for someone who has MND, members of my family often drop in or even stay for few days - and will help when they call and are available to chat to. Sometimes I go to Cares UK forum as it can be nice to post a query there. I found it helpful to have a meeting with a local advisor from parkinsons.org - I often go out for walks and can meet people for a chat on the way round. Even with all that I can sometimes feel isolated - I hope you manage to get out now and then. Best of luck to you
Thank you Peter.
I will try and make the effort. I couldn’t reply straight away as a Grandaughter popped in for a coffee.
I will be in touch again.
Thank you Justthisguy.
I think that you have spurred me on to accept a little help in the future.
Thank you for replying.
Any time Molly we all need help some times
Hello Molly, just wanted to echo what the others have said. It most certainly is ok to dip in and out of the forum, it’s never closed and you will always find a willing ear. Like the others I understand why you keep so much to yourself but please do take care of yourself and remember you can change your mind and let others in. I wouldn’t be surprised if they didn’t suspect something was up, even if you are not saying anything and your husband is presenting well. It is hard to hide all the non verbal cues when you know someone, maybe they don’t like to ask. I am not assuming anything here you understand, just offering a view and if you get enough support by coming to the forum now and again that’s fine. The question of when, if and how to tell family and friends is one we all have to wrestle with and there is no black and white answers to that, only what feels right for you and your husband. It is true you don’t know how people will react but if that is stopping you, ask yourself why. Strikes me you are using a lot of energy in keeping up appearances when it need not be like that. Please be assured I am not being critical of your decision for you and husband to manage, it is your choice and if that works for you then it’s the right thing to do, just be equally sure of your reasons and know there are other ways to manage the circumstances in which you find yourselves. Whatever you decide, use the forum whenever you need. You are most certainly not on your own. With best wishes to you both.
Hi Molly just to introduce myself I, m 9 member of my family with pd my late father, and his late brother and sister both had pd so I have seen Parkinson’s in it, s many forms and all I can say is in the end we gave in and asked for help it’s not an easy decision to make but you really can’t afford to run yourself into the ground please talk it over and at least think about it I, m here if you want to chat
Hi Molly I do so understand. My husband dx around 10 years ago. He is declining quite badly and because of past problems due to dopamine agonists (no longer on them), his family (he is my 2nd husband) have nothing to do with him. So the task of caring is 100 per cent at my feet, although my family have been much more understanding and fully support me.
Although he is not quite at level of your husband he is definitely failing and its hard to watch him struggle on really bad days like today. I hope we can offer each other moral support over the difficulties this wretched illness causes.
Just thought I’d say hello & welcome to the forum.
I’ve read the whole thread and can’t think of anything to add to the good people who have already replied.
Except to say that on here we look after each other as best we can.
I wish you peace of mind and hope you find the kind of help that you require going forward.
Hi, it might be useful to say what area you live in. I’d be happy to pop in if you think that may help.
I’m Vanessa. I care for my husband with advanced PD and Lewy Body dementia
Have you got any free or paid help at all yet? Or help and advice from a charity like Carers Support, who are marvellous. They can refer you to various free expert advisors. And to charities who provide respite care.
I wonder if you are able to leave your husband at all to get out and have a coffee with friends.
I understand you want to protect the family. I began that way with my husband’s daughters. And then felt they deserved to know. It didn’t make them more attentive! But I keep a daily diary and sometimes share parts of that with them by email to keep them in the picture about their dad. They appreciate that.
Only you know what is best for you. And while your husband has the right to make that decision, he will want to consider you and the family. Would they be more hurt by not being told?
Whatever you decide, please try to have a few hours to yourself, either in or out of the house, each week on a regular basis. Don’t wait till you hit a wall. You matter too. Without you, your husband could not manage alone.
Something you may not have thought of, because I didn’t, is that it’s a good idea to surround yourself with sufficient professional visiting support to have evidence you are able and competent to be your husband’s main carer. District nurse for example, or charity employees such as Care Navigators.
Take care and good luck.
I haven’t been on the forum for a while but would like to thank you all for your replies to my introductory post months ago. My apologies for not getting back to you. I feel I might have misled you by writing the way I did. My children are well aware of the PD. It was just that I made it appear to be ‘not too bad’ and ‘I’m coping with it’. Well I wasn’t coping up until a few weeks ago when I got a carer to come in and get my husband up, showered and dressed and wheeled into the lounge. What a difference it has made.
He has recently been diagnosed with Lewy Body dementia and has taken a severe downward turn. He cannot walk at all now and is hallucinating badly. He recently spent a few days on hospital because I thought he was having a stroke. He wasn’t, it was the PD stage 5 setting in. I wasn’t aware of a stage 5. But I will take any help that is given because I know now that I can’t do it alone no matter how tough I think I am. I am in touch with a mental health nurse, a PD nurse if I really need too and have a wonderful carer. Thank you all for your support. I hope you are all managing somehow, as it is all we can do is manage.
So glad that you have finally got help and a carer. It was the most difficult decision I ever made to have a carer for my OH. I thought I could do it all 24/7 and it was only a few months later, after a near fatal accident myself,( not even driving the car just standing next to it), that that decision was taken further out of my hands and a care home was needed as I could no longer physically cope with the demands of full time caring.
just wanting to say hi really - as someone in a very similar boat to yours, though my OH remains mobile, which is a blessing - I suppose - sometimes I wonder.
Being around people who “know” - i.e. other carers, is when I can feel most relaxed and understood - not needing to explain or excuse or whatever. Our local CMHT run a 6 week programme called “caring and coping with loss in dementia” . I didn’t find the programme itself or how it was run very helpful at all (others said they did) - but, it introduced me to some other people in the same situation and that has been really excellent. I only mention that in case there is something similar in your area . The difficulty for so many of us is getting out of the house on our own - especially for a regular commitment - given the vagaries of how Parkinson’s presents itself. I am very fortunate in having a son who helps out when he can. Online forums are fantastic, but you can’t beat face to face contact too - it is just a lot harder to organise. Perhaps we need to be content with doing the best we can, under extremely difficult circumstances, and which are such a far cry from how we wish them to be. SO much easier said than done.
warm regards, Pippa