Hi,
We moved my Mum in to take care of her last summer. Gradually she has found it harder and harder to walk. With help and a frame she can just about walk 4 metres from the bed to her bathroom. Her feet get stuck turned out sideways or she is freezing all the time, also unable to move herself in bed.
She is otherwise alert, loves to eat, music. Her arms are very stiff and often at 90 degrees to her body even in bed.
She is 85, PD for 7 years. Just dont know if we are stage 5. She is practically bedbound and never wants to sit in her chair always asking to move after ten mins. So far never had bed sores pr breathing issues. I am at a loss now and at the point where we just make her comfortable rather than forcing her to be active.
We have to cover care privately which is a financial drain. Havent had any good experiences with large chain agencies, so am doing it myself and have young kids. Just quit my job as I cannot cope
Have you applied for carers allowance or any of the other benefits that maybe available to you? Also take full advantage of any local services you can. Here there is a group that will have someone come and sit with people like your mum so that the carer and any other family members can have an afternoon together away from the home.
I wouldn’t force her to be active just make suggestions of “don’t you think it will be nice if you…” etc most of the time you will most likely get a no but on the odd occasion you might get a yes. The mother in law is in a care home and yesterday on her 87th birthday we managed to get her out of bed and outside in the sun for a few hours to enjoy the sun and the wonderful cake the staff had made for her.
Hello,
My husband is 82 and was diagnosed with PD 17 years ago although looking back he had symptoms for some years before that. I think fatigue is a big issue so even if doing things sounds great it quickly becomes very tiring. I do hope your mother manages to retain enough mobility to get to the bathroom but be prepared for that to change and plan ahead. I also hope you manage to find a better care. The best person we had was self employed and she was wonderful but could not give us enough time so we used a procession of agency care as well until my husband’s condition deteriorated to the point when we needed two people 24 hours a day because of the hoisting and another heath condition so he had to go into a nursing home, where he still is three years on. I am so glad your mum is still alert and has pleasure in life. As previously advised, do apply for Carers Allowance as you are of working age. It is not much but better than nothing.
Dawn
I don’t think I can offer any suggestions about your Mum as I am a carer to my wife (she is 60 and 5 years PD),I am 61. My wife has Lewy body Dementia as well as Parkinson’s.
Posting to say please look after yourself. I have cared for my wife since diagnosis and it is exhausting. I still work from home part-time but our kids are grown and have moved out. Can’t imagine how you managed with young children.
I have posted elsewhere about our situation but suffice to say I have reached the point where I recognise I can no longer look after my wife. It reached a point where we were no longer husband and wife. She is now in a hospital and will likley to be discharged to a care home. I made the decision to try to salvage our relationship, to ensure that my wife gets the professional care she needs, and also to protect my health. Our kids may be grown but they will still need a parent now and again.
I worry about the impact that looking after Mum will have on you, on your children and your relationship with them. It’s a big decision but don’t be afraid to acknowledge that it might be too much for you. The guilt for me is huge but when I can control that I know it’s the best decision for all of us. It’s not easy but it might be the best thing for your family in the long run……
Have you looked into applying for Carer’s Allowance or other benefits that might be available to you? Additionally, make sure to explore any local services that could help. For example, there are often community groups that provide companionship for loved ones, allowing caregivers and family members some much-needed time away.
When it comes to keeping your mum engaged, it might be best to gently suggest activities rather than pushing too hard. Phrasing it as, “Wouldn’t it be nice if you…” can be more effective. Even if the answer is often no, there may be occasional moments where she’s open to trying something new.
For instance, my mother-in-law is in a care home, and just yesterday, on her 87th birthday, we were able to get her outside for a few hours to enjoy the sunshine and a special cake made by the staff. It was a small but meaningful change of pace that she really appreciated.
I am really touched by your message. Thank you for taking time to reply. Yesterday I had an appointment for myself as I have a problem in my neck and arm and I spent the evening feeling really down as I know that this has been triggered looking after Mum and feeling guilty that I should worry about myself and not wanting to feel worse or have long term damage. And then wondering how I can manage mum going forward and whether a home is the right thing even though she will hate it. But then how we can manage that financially.
