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.
Dear Sean, Thank you for taking time to message me. I really appreciate your thoughtfulness. I left work as the strain was too much and I couldn’t give anything or anyone 100%. Unfortunately both my inlaws are very unwell too and require 24 hour care , located across London. As a family, we like we are constantly being squeezed. The strain on my husband is much worse and his parents can no longer speak. - stroke and dementia. He also has a demanding job. Anyhow since I left work and administer all Mum’s medication , she is more stable, sits out more and does some physio everyday. We have got in to a new routine. I am going to start with a caring agency and once mum is comfortable increase it. Then I hope to get my life back a little and work again. I have told her that once she is no longer able to walk, she will have to move to a care home. She stayed for respite twice now. Maybe this has motivated her to move more!. Anyway so now I need to find a way that she can have a timed medicine dispenser for one or two doses, which she can manage when the tremors start and meds have worn off as that will help me when rushing around for the kids. I haven’t seen anything that will specifically help yet: Wishing you all the best with your family.
Hi my brothers carers have not been giving him his meds everyday and now he has ended up in hospital as he could not do any thing for his self as before this happened he was able to feed him self and was going in to town for a coffee with his mates
Hi all. My mum is 86 and been diagnosed with PD in Dec 2018. We were told it is the slow progressing disease. We now are at the stage where Mum struggles to stand up (out of her hospital bed), she just can’t get her balance unless she points her feet backwards. I have some carer for visits for three evenings, they have now said that we need two people for an hour for a visit. Everything has just doubled, but I understand. I am struggling. Also she has a bell, she doesn’t seem to know when she has passed a no 2. She is aware of everything but in the last two weeks (she wears pads) I’ve had to clear and clean 7 times with a bad back. I have young kids, sick in-laws and everyone needs me for everything. I am very overweight. I have no motivation and am exhausted all the time. I feel like caring for my Mum in the last 2.5 years in my house and 2 more before that has completely wiped me out. I know things won’t get any better. She is effectively bed bound and only walks with difficulty to the bathroom. If I get more carers they will give up on the walking and change her in bed due to risk assessments etc. the costs are ridiculous. Not sure whether we should up the double visits for care at home or move her to a home. She has to use her savings and they will dwindle down very soon. I’ve not seen any great homes from the ones we used for respite care. Sorry if I’m moaning. I have given up my job for a year, feel trapped . She’s part of the Parkinson’s unit, still chasing OT for a visit about a sirasteady, altho our bathroom may not be big enough. Will a sirasteady make it easy to move mum around, with one person?? Maybe that would help with care visits not being doubled. I’m a bit broken and it has only been two weeks since mum is home from a 3 week respite care.
Oh I also have noticed that Mum speaks on things occasionally that make no sense and in all seriousness - she said there were zebras, lions and elephants in the garden and to be careful for her grandson. One morning she told me how she was in hospital and awaiting the doctor and asked me to go see what was happening. Are these hallucinations???!! Her meds haven’t been changed for more than a year.
Hello, we are so sorry to hear you are struggling and understand how concerning this may be. Please know the way you are feeling is totally natural and you are not alone.
Caring for someone with Parkinson’s can be tough. On our website we have some information, including links to local support groups and respite for carers, which you may find useful: Supporting someone with Parkinson's | Parkinson's UK
If you need to speak to someone, please do call our helpline on 0808 800 0303. It’s free and confidential and our specialists will be able to offer you advice and guidance as you continue to navigate this.
Please take care and let us know if we can help any further.
