Parkinson’s Plus


#1

My mum has recently been diagnosed with Parkinson’s Plus, after a 3 1/2 year struggle trying to understand her condition & help care for her. In 2015 she was admitted to ICU with pancreatitis, on her discharge she shuffled instead of walking as she previously did. Mum has now lost the ability to walk, stand & her speech is slurred. After a fall last month & prolonged stay in hospital, we made the heart breaking decision to move her into a nursing home. Mums been prescribed Madopar & takes regular pain relief for aching limbs. I’m still in shock from the diagnosis & having to move her from the family home. Any advice, suggestions, past experiences, would be greatly received as at present I feel as though I’m the only person watching a loved one go through such an illness. Thank you


#2

Hi @laineytay,

A warm welcome to the forum.

I’m really sorry to hear that you’ve had to make such a tough decision, I can only imagine how heartbreaking this must have been for you and your family. We have some information on our website about care homes which you may find useful and there other services available in addition to this forum where you can speak to other people that share similar experiences to you.

Please visit here and here for me information and support.

Best wishes,
Reah - Forum Community Manager


#3

Hi there,
I’m sure that everyone who has read your post will be rooting and feeling for you and your mum. You are very far from being alone but I know that it feels like it because you are not surrounded by a bunch of people going through the same. And yet they do exist, in their hundreds and thousands, ( v sadly), all hanging on in there by the skin of their teeth, making the best they can of each day, each moment, despite huge pain and struggles, emotionally as well as physically. Unsung heroes everyone of them.
Nursing homes have such a bad name, but I have several friends who had no option but to find a place for their parents, after much soul searching and questioning, but it proved to be the best thing for them in a lovely, lovely home, and I suspect they had a better quality of life and care than if they had stayed with family , if only because in the home there was more company, wonderful care, stimulation and safety. It is not a path that many people would choose for their loved ones but maybe they should. Am not there yet, with my husband but have to be open to the possibility that I won’t be able to cope with him at home full time and to try and do so would incur too great a cost to him let alone me and our sons.
I know it can feel like a failure, a betrayal, an “easy way out”, but of course it is none of those things and anyone who has been through what you are going through knows that. And surely no one should wait till they are well and truly burnt out or desperate to decide on that option.
And, if it means that you can rest and recuperate and be less worried about your mum, then the time you spend together now will be all the richer for not being muddled up with all the demands of physical care and you can simply enjoy spending time together, in whatever form that can take.
It sounds to me like you have done absolutely the right thing…it is a matter of you coming to believe and accept that, and that is no easy thing., I know.
Warm regards,
Pippa


#4

Thank you for your lovely words of support Pippa, they have brought tears to my eyes. I’m sorry to hear you and your sons are having to realise the consequences of Parkinsons too. I think I previously stated my Mums only just been diagnosed, but has had the condition around 3 1/2 years. I assume with P+ the illness progresses much quicker than Parkinson’s. Mum & Dad moved closer to me a couple of years ago, because we could see her health wasn’t improving. We hoped a new life, near me, the grandchildren, open county side, would improve her life. Unfortunately it didn’t. After numerous falls & breaks we are now in this position. It’s heartbreaking to watch someone you love & someone who was so active & giving, to be in this situation. It’s hearbreaking.