Hi all, I’m concerned about a friend who has Parkinsons, since diagnosis the deterioration has been rapid. My friend doesn’t want outside help and the elderly Mum, who is the unofficial primary carer, is struggling. I visit when Covid restrictions allow and my friend has lost a lot of weight during the lockdown. I’m worried for my friend, elderly Mum and siblings, I don’t know how or what to do to help.
Hi Ruth and welcome to the forums. I’m sorry to hear of your friend’s situation. I’m sure there will be other forum members who will be able to share their own experiences of supporting a loved one or friend.
That said, you can also contact our Helpline and Local Adviser Service on 0808 800 0303 or email: [email protected] where we have specialist nurse advisers who will be able to discuss your concerns, and our helpline and local advisers can also link you in to support in your area.
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First I want to say how lucky your friend and her family are to have such a caring friend and the best thing you can do for her and them is to continue to be there for them, just as you are doing now as best you can with the way life is at the moment.
Many people when first diagnosed effectively go in to shock. Their whole world can be shattered and they won’t be able to see a future. More to the point they probably know little if anything about Parkinson’s, and many start reading everything they can get their hands on and end up scaring themselves silly. This may or may not be an accurate description of your friend but my suspicion is that is at least in part what is happening now. The hard truth is that it is not something that is going to get better and that is not an easy thing to accept but she will discover in her own way and in her own time that you can have a good life with Parkinson’s and it’s not the end its just different. (Have assumed your friend is female apologies if not) I am not going to insult your intelligence by saying its easy because its not. It can be challenging and frustrating but in most it is slow moving and adjustments can be made. The early days are hard for most, everything feels uncertain and unknown, which in many ways it is but it is a path all of us with Parkinson’s have walked in one way or another and come out the other side. I was diagnosed 11 years ago, live on my own with only 2 hours help a week which I arranged privately - I never did like housework much!
I have to assume she has not long been diagnosed and has contact with a medical team and hopefully a specialist nurse. I know that is not everyone’s experience.
Just to pick up on a comment you made. You said her deterioration has been rapid but do not say how other than weight loss and you also say she doesn’t want outside help. This is not to be critical of you but to try and help you understand. You have not given a lot of detail so I am reading between the lines a bit so apologies if I am way off the mark. The suggestion of outside help well intentioned though it may be, can serve to reinforce the notion that you can’t do things anymore and it is actually difficult to let someone else come in and "do’ for you, it can feel very intrusive and indeed in a way it is. It may be better to let that lie for a bit and not run the risk of it becoming an issue.
I do understand you want to help and by that you mean do something practical, something where you can see you 've made a difference and your friend is coping better. One of the hardest things for family and friends to do is see someone they care about struggling in the way you are seeing your friend. The greatest gift you can give at the moment is to carry on caring and be patient. It can take time to discover life with Parkinson’s isn’t the end of the world but she’ll need to work that out for herself.
You didn’t give a great deal of info so as I said I have been second guessing a bit. If I am way off I the mark please let me know.
I hope this helps a little.