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Guilt and Horror - Parkinsons and Dementia - Carers UK Forum

Guilt and Horror - Parkinsons and Dementia

For issues specific to caring for someone with dementia.
Hi everyone,
My father was diagnosed with Parkinsons over 12 years ago - but its been in the last 4-5 years that his frailty, confusion and Parkinsons-related dementia has really taken hold. I am 38, single, and I do have two brothers who share the burden- as well as two carers who work on shift. I work full time for myself, but try to get down to see him at least 4-6 days per month. I am really struggling with the horror - and then attendent guilt - I feel when I take over his care and am required to help him on the toilet. He often has pretty horrendous accidents and when I am left to do this on my own, my brain sort of seizes up, I feel repulsion (if I am honest) at my father's horrendous state, knowing that he must hate his helplessness in front of his daughter even more (he used to be such a charismatic, atheletic person- and a very caring father who looked after me when my mum died as a teenager), makes it even worse. I feel anger, real terrible out of control anger, at having to say wipe him down and try to get him cleaned up. I don't think I can cope. Its just too much for me. It seems to be less of a problem for my brothers - i think my gender does have something to do it with it in relation to 'handling' his genitals and general nakedness. I feel I am a terrible person, which just adds to the sadness of seeing him disappear so entirely from view. I'm 38 now, single, and as my mother died of Cancer when I was 16 (something I saw far too up close and personally in the room next door to mine) this is bringing it all back but also, means I have so little parental support. I wonder if I can ask if anyone shares these feelings, and if there perhaps is somewhere I could go to talk it through. Is anger and revulsion an ok feeling at all to have? Above i feel so angry at the universe - and its been going on for years now, but still I can't cope. Any help hugely appreciated. Thanks for listening.
Welcome Lucy
Yes feelings of anger, guilt and frustration are common. Someone else on here was posting recently of the revulsion dealing with incontinence issues so you are defitnely not alone. Ill see if i can find the link.
You have done well to get such a good team of help for Dad. Could you perhaps talk with your brothers and see if there can be a restructuring of the duties so you don't have to do that task, but take on something else instead? Some on here find they are better suited to a the role of care manager rather than care provider for example.
Another option is to talk to a counsellor about your feelings, especially where it's pushing the memory buttons 're Mum
Many of us find changing the word 'guilt' to 'sad' helps. You are not guilty for Dads disease, it is just sad, very sad.

What support do you get for yourself? Anyone to give you a hug or a shoulder to cry on? Both are good stress and guilt removers :)

Am sure others will e.g. along with more comments soon. Meanwhile you've done terrific in very difficult circumstances
The time has come for you and your brothers to have a family conference about dad's future. I wouldn't be comfortable in your situation either, in fact I just couldn't do it. We are all different, some can deal with some things better than others.
There are a range of options, so to start the process of working out what to do next
Has dad had a recent Needs Assessment from Social Services? (Are the carers privately arranged or from Social Services?)
Is he receiving Attendance Allowance?
Has the exemption from Council Tax been claimed?
Does he live in his own home, or rented property?
Does he have over £23,000 in savings - just Yes/No is fine?

Think of arranging care like a road map. Whether you turn left or right at particular points will affect the route to the destination.

Most of all, everyone must now think about what dad NEEDS.
Of course he wants to stay in his own home, but is this going to be possible or practical, or affordable?
Is the GP helpful?
Oh Lucy your feelings are normal I promise you. I am the carer of my 78 year old husband and I too feel horror and yes, disgust, when I have to clean up his accidents.

Do you have any support? I agree a family conference is in order and the time may well have come for a nursing home.

Please keep posting - we won't judge you and I feel dreadfully for what you are going through. You obviously love your father very much but sometimes the time does come when they need more help than we can give.

Please don't feel guilty. My Dad has an inherited neurological illness called Huntington's Disease, which a bit like Parkinson's causes physical and mental symptoms. He is currently in hospital as my Mum has been diagnosed with Alzheimer's disease and can no longer care for him. If I am visiting he often needs to be taken to the toilet and I absolutely hate it. I started feeling I had to step up as he is basically bed blocking and I felt guilty the amount of work he creates for the staff. But I have since let go of guilt as taking him to the toilet was the final straw in a difficult situation. I now ask for help. And I don't feel bad. It sounds like he was a nice father and he wouldn't want you to feel like this, would he? As people say, try and find a different way to help if this is too much for you.

Also like you the situation has dredged up memories and feelings I thought were long forgotten and buried. My Dad was a fairly rubbish father and a bully to my Mum and my sister, less so to me. And I have also felt very angry. I plan to get some counselling to work through all this when things are more settled!

Be kind to yourself.

I spoke to alzheimer scotland helpline after my mum fouling wc for second consecutive day last week. Seemingly it is a dignity issue and you SHOULD NOT be expected to assist with toileting (or as in my case cleaning up after).

Is a colostomy bag or similar an option?

I know exactly where you coming from re intimate care for parent of different gender. I simply refuse to do it, that's what carers are for, leaving me assist with meals, meds, etc which happy enough to do.

Know this sounds brutal but maybe only going in when your brothers or carers are there way forward?