As a child I looked after my grandmother from a very early age as I lived with her and she had a dreadful stoke. I remember she used a commode, to this day the thought of it makes me feel sick. The smell was horrendous. My problem is that as my husband gets worse and he does have a problem getting to the loo quickly enough. I now have a dreadful fear of him becoming incontinent as I don’t believe I would be able to cope. I just don’t know what to do or who to approach for advice. It literally terrifies me. It makes me feel so guilty that I don’t think I’ll be able to help my husband. There are no family close and to get a carer where we live is near impossible. Has anyone else had this problem and if you did how did you resolve it?
Afternoon everyone. Unfortunately today is a difficult day. AS I am the main (only) carer for my husband I am now finding his Parkinson’s and dementia with Lewy bodies difficult to cope with. I shouldn’t say that because it’s my husband that is suffering. I try to help him as much as possible, I deal with everything around the home, I deal with all finances and I deal with any correspondence etc. my husband however tries to do things which either result in him making himself feel even worse or potentially falling. So I keep an eye on him. We are at the point that he finds using the remote control difficult. He watches film that he watched a few days ago as he can’t remember seeing them. When he struggles with say the remote, I will offer to help. This generally results in him raising his eyebrows. If I try not to help he can be trying to find something to watch for over 30 mins. At this point I try suggesting he lets me help as we would be doing this all night. He now tells me that I make him nervous. I feel my world is getting smaller and smaller. The only time I go out is if I need shopping for us or maybe a doctors appointment. My husband will not go out. If I do go out I tend to rush incase he needs me. I have no one to help to watch him. It is only this week that he has agreed to a befriender coming to sit with him. That’s taken four years of encouraging him, for him to say yes. He wants to talk about his teenage years over and over again. He talks about people and places that I know nothing about. A lot of the time he starts conversations at the most inappropriate time. It could be that I need the loo or I am cooking or I need to sort something out. I have to ask can we leave this for now and explain why. I do make time for sitting with him and letting him go over all his memories. I do however feel dreadful and guilty. I feel like I’m not doing enough for him. That I am constantly asking him to hold that thought for a few minutes. He wants me to find a holiday but he won’t leave our dog with anyone and would not consider kennels. Last year I booked us a caravan but then had to do all the packing. Get all the cases in the car. Take them out of the car etc etc. I have back problems and I found this really hard. Now I feel I’ve got to do it all again and it’s more of a hard slog than a holiday. I feel dreadful because I feel my life is over. I also hate that I have lost my partner and best friend to this horrible disease.v
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I’m so sorry that you’re going through all this heartache. Yes your husband is suffering, but you are too. There’s no need for you to feel guilt of any kind at all, you are brave, loyal and loving and of course you have, are and will struggle mentally and physically as your husband’s health deteriorates. Please try to maintain your health, as difficult as it is. It’s what’s going to help you during the difficult times ahead. Look after yourself xxx
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I would suggest and recommend reaching out to our free and confidential helpline, on 0808 800 0303. Our staff of advisors can assist with a range of needs, from medication questions to finding support in your area, and are always happy to help. Added to this, our website, Parkinsons.org.uk, is an excellent source for answers
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Hello,
Could you ask your local council for a care assessment? It might take a while but if it was found you were eligible for carer support a couple of times per day, this might free you up to do the few things you mentioned. Its up to them to find carers to fulfil the contact. Do you have photo albums or a photo frame with a memory card in it, would your husband sit with anyone else to look at them? Does he like music and could that be a bit of a distraction? Or magazines with professional pictures such as National Geographic?
Regarding the commode, can you check with GP or Neurologist if the medication is being given exactly at the right time and how this relates to when your husband is eating and is he drinking enough? Would a gentle laxative help? Anything to make sure that everything is moving through the system as it should and if so, is there a predicabilty about this that helps the daily routine of toilet visits. You could also ask for a referral to the incontinence nurse.
You need a bit of time to yourself and dont feel guilty about that.
dear west pest
I am the patient and I recognize a lot of the problems that your hubby/me present.
I go to a local memories group, which is helping me a lot.
I encourage my bettert half to go out a lot. I like the peace and quiet.
I lose the train of 5hought and can do nothing other than wait for my brain to kick in to action. It is random and has little logic.
The toilet is right next to our bedroom and we live in a bungalow. This helps a lot. No stairs and right by the loo.
I do lots in the garden, meaning better half has her own “space”
I still have my driving licence but rarely drive. I will soon sell my car, leaving space in 5he garage for an electric scooter.
I would happily go to a care home and currently reviewing suitable homes. I will pay for my care by purchasing an insurance policy.
Shame we don’t live close, you and my better half could swap ideas ! But we areas far east as you can go in England.
Hope you have the blue skies and warm sun that we are enjoying.
Best wishes
Sooty
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We are in the process of having a wetroom built downstairs in order to cope better in the future. Quite a task and very expensive…still…
Sooty
Thank you so much for your reply. I too go out into the garden as I love the peace and quiet. My husband tries to help me and I encourage him to do this. We are fortunate in that we live in a beautiful part of the Country on the NC500 route. This however causes difficulties in getting any caring help due to the remoteness. I have now agreed that I will go for a monthly back massage and start attending a carers for carers group. I really appreciated your perspective.
Hi about 5 years ago we added a cloakroom in what used to be a large cupboard and I’m so glad we did. I remember it being quiet expensive. We also removed the bath from the bathroom and put in a double shower. We have a small Crofthouse which was built in 1884. As this is the case every job is a major job due to it being solid stone.
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