My mum was diagnosed with PD 3 years ago and we are seeing her getting worse which was to be expected. Her posture is bad and she has had neuropathic pain and she is now on Gabapentin. She was on the one a day med and she has now gone back to 3 a day. She has underlying functional problems, and is due to have knee surgery to explore further. We are trying to eliminate all other complications before accepting what actually is the PD symptoms.
In this long struggle I wondered if anyone could offer their experiences and advice on planning for the future. My mum will need support and care in the very near future and we had a bad experience of a home stay as a result of a bad A&E decision which brought about a conversation that made us all agree that we didn't want my mum in a home. All sorts of bad practice came about, I am sure some of you will have experienced the lack of knowledge and training of care staff, forgetting meds on time which made my mum very ill not to mention d&v as a bonus. My mum explained it was as if she was distant somewhere struggling to get back. I don't want her to have these future experiences and we want to care for my mum.
My husband and I have a young baby (10 months) and we both agree we want to do this so that Baz will have his Nanny. I have an older brother who I expect will disagree given that my mum lives in Staffordshire and we now live in Edinburgh. I can't see her living on her own anymore.
Has anyone done this, I would love to hear your experiences and any support you got. We are not greatly financially well off and this would be a real strain, does anyone know of any funding or benefits? so far the only real support we have had was in getting a blue badge!
We need help and would love to hear if you have advice to offer, good or bad.
I strongly recommend that you speak to the helpline, top left of this page. They can give all sorts of advice, medical social, practical and might well be able to put you in touch with a Parkinsons UK local Welfare Officer. The first thing that springs to mind is that your mother should at some stage be assessed by an occupational therapist through whom you should be able to access appropriate equipment (there's all sorts of stuff people have gone and bought at disability shops which proved to be useless) and as and when necessary adaptations to the home both small and large.
It may be, as you say, that when her other problems are sorted out the PD can be better assessed and hopefully an improvement. I am 73 and was diagnosed three and a half years ago and am doing pretty well albeit with the neuropathic pains at night and stiff hips. Judging by the fact that you have a baby I'm assuming that your mother is not that old.
Thanks for your post and for the advice which means a lot particularly as you will know how my mum feels. It is really hard to know how my mum feels, I can only imagine. She has depression and this is difficult to see in my mum who has always been the positive, outgoing person who held the family together.
I will give the helpline a call. We have tried to gain access to support for my mum, she did see a physio and OT in her short stay in a home, but not a great deal came from this (other than a perch stool) as she does not have a great deal of need for adaptation just yet, but I am sure she will. I am finding that these groups and other support do not provide assessment or eligibility until really late on and when they consider the need to be greater, the irony being that you need it early as a preventative.
My mum is 63, she is young and I am 33, we lost my dad to a stroke when I was 23 so she lives on her own which is a great worry to me.
I feel a bit lost as I can normally come up with solutions to problems, this is one I can't fix.
I wish you all the best and take care, thanks again.
I agree a call to the helpline is a good place to start,As you live in Scotland some things will be different especially care, perhaps the helpline will put you in touch with a PDUK local support worker in you area and she will be able to assist you in making the right decisions.
If you are not working and your mother needs help with managing her daily activities ie dressing washing medication or other assistance she may be entitled to DLA and if you also help her you can then claim carer's benefit as long as you don't earn over a certain amount (I think its around £90per week at the moment) as she is only 63years old she may be able to claim the mobility component of DLA she [u]m[/u]ust do this before she is 65yrs otherwise she will be unable to claim it. Just because you have your mother living with you doesn't mean that you can not get home care into to help so don't be put off as you will need this help especially with a young baby.
You mention your mother may need an operation on her knee, having a general anaesthetic can upset PD so be prepared for her to take a while for this to settle down again.
Do think carefully about how you will manage her ongoing condition and if you go ahead please make proper plans and use everything available to assist you all.
Just to let you know my husband has had pd for thirty years and I am quite a strong person not physically but mentally, I kept him at home for 28years but couldn't manage even with 24hour care in the end so he is now in a nursing home, I would do anything to be able to get him home again but this is not possible so I do understand your concerns about care homes. There are some good ones but they are too few.