My mum has had PD for around 15 years now. For the last two years her mobility is reduced to moving around her room. She lacks confidence to go much further and is scared to go downstairs as she may get stuck downstairs. She gets stuck doing one task be it scrolling through her phone or looking for something in her room.
She has limited quality of life, yet has so many unfulfilled desires. Simple things likes going to the beach or something closer like a garden centre. To do this it requires multiple people to get her ready or simply move her as her movements are so slow. It takes at least 2 people to get her ready and it seems like everyone is too busy or can’t be bothered to do anything. It’s a real struggle for everyone supporting her.
We have carers but they often struggle too to put her bed.
Does anyone else face this similar issue?
Hi Gnijjar,
Wow, I don’t quite know what to say, Have you considered moving her into a care facility?
Neither you nor you family can carry on like this, it will end up virtually destroying your quality of life.
My 77 year old dad is in a similar situation having being diagnosed 12 years ago. Last 6 months have been a nightmare. We also found out he was deficient in vitamin b12 which hasnt helped his Pd. His mobilty has reduced to a few very slow and careful trips to the toilet a day. We have bought a colapsable wheelchair which has helped getting him out of the house for half an hour a few times a week. But yes even getting him to the toilet sometimes feels like a challenge. Hes also had several falls this year, thankfully nothing broken as yet but it feels like we are just waiting for it. We have carers twice a day as well but they are limited in what they can do. But you are correct it takes its toll, especially when you are trying to work full time as well as i am. My father has some signs of parkknsons dementia as well which i hope to discuss with his nurse in a couple of weeks (first time he will have seen anyone in 2 years). I am going to give my dad every chance to stay at home as long as possible but as the same time i dont think i can do it much longer. I do have some guilt when i start thinking about Care/nursing homes, but at the same time i think they are a lot better than they used to be, and i even think my dad would probably have a better quality of life than he does at the moment, more company etc, better more tailored care for his particular needs.
Thank you for the response, this sounds very similar to mum, she’s fallen a few times this year. In fact she couldn’t get up from the floor the other night and dad couldn’t pick her up as he’s recently had a knee op so she ended up sleeping on the floor.
I too don’t want to consider a care home as she is only 68 and still has good mental capacity, but has a poor quality of life.
However it may be the only choice we have as a family in the future
I completely understand you dont want mum in a care home at 68 and obviously it sounds like dad is still living with her. It is sometimes good to talk about these things openly and honesty. Ive talked to my dad about the future several times since his pd deteriorated (definitely stage 5 now) and on occasions hes almost happily accepted life in a dedicated care home would be better, then on the rare “good” day he has at home he hates the thought. The main issue i have is the falls. I cant be there 24 hours a day. Sooner or later hes going to end up in hospital and breaking for example a hip or a leg at 77 with pd its probably game over as far as living at home goes anyway. I hope things improve for you.
Hi, I was almost brought to tears reading your post. I was diagnosed in 2005 and at first thought I’d been given a life sentence but I’m a strong willed person and I decided that I would learn all I could about it. I gained an interest in Chinese Medicine in order to have one more tool to aid me (I say tool and not weapon). Apologies, I’m getting off the subject. I understand entirely what your Mum AND you are going through, as I get days when I get similar symptoms, like when I feel like my feet are glued to the floor. After much studying, I found that I could manipulate several places on my ears, wait 5 minutes, then I could walk normally. I used this for 3 years or more, so I know they work. Sorry, Im going off subject again. Im lucky, I have understanding friends and family. It is still hard for me and I’d be lying if I said every day I’m OK but I have learned to push myself through most days, as I am a carer for my wife who had a brain aneurism and stroke several years ago. So I spend most of my days caring for my wife. She’s in hospital again, so its a drag going to see her as she’s not local and I get home exhausted, especially when travelling with my fit and healthy son-in-law. I wasnt going to post this after taking a long time putting it together because there’s nothing constructive to help you except to say that I feel for you and I understand entirely what you’re going through. I sincerely hope that things change for you soon and you are given more help.
Dave.