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.
Your honesty and forthrightness is commendable and what you have communicated indicates that you are warm, kind and sensitive human being.
This is a sensitive subject and difficult for all of us to come to terms with. The care of an elderly male and keeping hygiene standards, particularly in the more sensitive areas is not easy even for non-family helpers (professional care staff, nurses, etc) for a daughter to tend to her father for such needs, is in my view, very stressful and may I say unreasonable for one to have do such duties. As it would be for a son to undertake these sensitive tasks on his mother.
It is really beyond my ability to make recommendations or give advice on this. I’m hoping our all-seeing Moderator may see this and be able offer advice.
Your brothers are helping to resolve this and sometimes other relations (cousins, etc) are helpful. Also social services must be available to help. The problem of timing, of suddenness of the needs of your dad and his unavoidable lack of control, coupled with unpredictability is indicative of the need for full time care.
I have some experience of this kind of problem in that in the sixties when my wife and I were first married her grandfather had a stroke and was totally incontinent. He had two daughters and three granddaughters who refused to clean him so I had to help. I was of course at work and sometimes when I arrived home (we were living at my wife's mother’s house). It was horrendous. There wasn’t home help or carers available in those days.
You are brave to bring this subject up. I do so hope it can be resolved. I know some of the female members of this forum will be able to help and offer advice.
Please try not to feel guilt, you have nothing to feel guilty about.
I agree with Jules, it's very brave of you to bring up a subject alot of people think of but don't say. You're not a terrible person just one who has been put in a horrible situation.
Would talking to a counsellor help? Someone neutral who holds no judgement.
I would guess your not alone as a family carer , Maybe a local Pd nurse will be able to sign post you in a direction of help in your anger? I doubt you'd be the first or last in your problems, other than that i can only say i watched my sister succumb to cancer at the age of 31 some 20 yrs ago now, as Jules said we were also alone in the care of my sister my mother having to give up work to do just that, and more recently my girlfriend was also ill and eventually died, Grief is a strange animal, maybe sometimes we don't fully grieve for those we loose for one reason or another, or it comes out in different ways?. I know when i was diagnosed i felt like i was grieving the loss of my past life.
Thanks so much everyone for your kind words - it is really useful to remind myself I am not alone in these feelings, or experiences. I am going to look into counselling - but also feel empowered to say that there are some things I just don't think I can emotionally or mentally cope with, and that I can and should draw a line if at all possible to the certain things i simply cannot do. My fear is that if I am forced to continue doing it I will only cope by disassociating completely and become like some numb robot, or putting all this anger/worse onto my father, rather than being the thankful daughter I am trying to be. Thank you all. I am going to follow up with Parkinsons UK and other places to see if there are any counsellors or groups I could join. Strength to you all.
Wow, you will be feeling I wish he would follow mum, feelings then, I felt those feelings when my most lovely Mother died just over one year ago and yes I felt guilt and horror that I could feel like that, she fell and lay all night unable to move, and my wife found her as y usual visit was and still is curtailed by two prolapsed discs, agony is not adequate enough to describe, things were much worse for Dad, a ex miner, it took a year for him to leave us, and on one terrible visit (they all were ) he gripped my hand and said " will yu tek is yem son divint leddis die in heer" I couldnt despite lying to him saying I will see what I can do Da, it was a reliefe when death took him 6 month later,
Guilt oh yes it will be with me forever,but so will my deep love for them both and that is what drives you to help your Dad, only the passage of time can ease that terrible dilemma , I WISH YOU WELL ON THAT AWFUL journey young kind person
I'm really sorry that you are having to go through this. Being a carer poses many challenges, but remember that you are not alone and there are many kinds of support available to you. It's great that you have opened up to the forum community, as other members do understand what you are going through and are a huge help, as you've seen.
We have a section on our website specifically for carers: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons You will find quite a bit of tailored information there, from links to organisations offering counselling to support available in your local area. However, remember that you can always call our helpline on 0808 800 0303 to discuss any concerns, ask for any information or simply to get support if you need to chat. We are here for you, so please have a look at the resources available and do get in touch if you need to.
The anger & frustration is very natural & I sometimes feel so bad for projecting these emotions onto him.
i don't believe he evens understands bc I feel
tthat the meds have made him
a very selfish, angry & self deprecating man. Nothing like he was 2 years ago. It's very hard to accept that that strong father figure will never return.
