When I first started full time care for my mum I brought in and paid for carers to give her a bath but they did such a shoddy job I stopped them coming - no point in having a dog and barking yourself is there. HOWEVER I found it incredibly difficult to physically touch my mum - its not something we ever did I had never been kissed by her in my living memory and I found that awful too. So you can imagine (or not if you're the insensitive sort) how distasteful I found it to have to clean her nether regions or lift her breasts up to wash and dry under them. Made worse because it was almost as though she sensed my disgust and wanted me to cream her lower groin area or put petroleum jelly around the anal area. I gritted my teeth, donned the obligatory surgical gloves, did it and went up and vomited - I couldn't help it. At one point I wanted to commit suicide rather than do this and when she got an impacted bowel and doctors would not come out (I live in UK so things are slightly different here) I had to manually disimpact her and that was gross. Time marches on though and now 2 years on I can manage to do it without disgust; the feelings of hopelessness have gone but I am known to my family as the mutterer for when it all gets a bit much I mutter terrible obscenities as I walk out the door. Mum doesn't know and I feel so much better for the mutterings. I won't ever say them out loud and they are unprintable here but suffice it to say ffs happens to be the most likely one.
Do i feel guilty? I used to ... now I accept that it is my way of coping and I though I ought to share it on here. Don't get me wrong I love my mum I just don't like her but then we have never liked each other and when I was little she always said she wished my brother had lived and I had died. Odd how 58 years on I would so love to remind her of those words but of course I won't.
Then today through her grumpiness and vile temper she said to me noone else could care for me like you do...So I made a joke and said am I that bad? No she said you are just like the daughter I always wanted not like the one I got. That will teach me to fish for compliments!!!!
R is for responsible
E is for enduring (estrogen cream in Dees case)
S is for safeguarding
P is for persevering
I is for incredible
T is for time giving
E is eternity
As care givers we are responsible for enduring care enduring their tantrums and still safeguarding them against those who would harm them. It is because we are persevering that we achieve such incredible results despite the odds being stacked against us. And that os because we give of our time not always willingly not always with love but because we care and yes sometimes each day can seem like an eternity and THAT IS WHY I NEED $%£%DY RESPITE BEFORE I COME AND SHOOT SOMEONE DOWN THERE.... Hmm now would that work? Doubt it
And Jude, what you did to that social worker was very naughty :) Enjoy your respite!
Now, we were a more affectionate family than some, so that wasn't so much an issue. But it seemed so weird for me, a 56-year-old man to be bathing and wiping Mom down. For bathing I'd put her in her wheelchair, get a basin and washcloth and clean her that way. More intimate areas I'd hand her the washcloth and tell her to "do the honors." Fortunately, that team effort worked. I did the same when replacing her Depends and cleaning her up. She did have a pressure sore on her butt, and I had no problem with treating that.
Dad's got dementia, I think the vascular kind. He has trouble buttoning his shirt and all, but I'll kid him about it. "If you ever reach the point you can't zip up your pants, you're on your own, bubba." But I guess all this is the part of the job no one wants to tell you about.
Her personality is so toxic to my system that I can hardly handle being in the same room with her, so professional caregivers will be needed when the time comes.
I'm so glad to read that there are other people who draw the line at this without guilt. I shouldn't need permission to say no to this but people keep saying the past is the past, get over it. Sometimes you just can't.
I should have known by the way the day started. First stop bowel movement - she usually calls me in to deal with that because she says she cant wipe properly. Well she cant and then she couldnt get her pull ups up as it were so she hobbled across the room (we have a care buzzer round her neck she COULD have rung) and all of a sudden the carpet is soiled in about 4 places, its all over her hands and the handles of her walker and she wants to hold on to me (never going to happen - I dodged that one) One hour later and cleaned up (6am now) she refuses meds - oh deep joy - so about 45 minutes later and she is screaming I havent given her breakfast, She has cereal or porridge or toast never ever wants anything else. I brought it in she through it across the freshly cleaned carpet and asked for a cooked breakfast. OK breathe and count to ten. The rest of the breakfast went well as did the rest of the morning and then I made the fatal error of taking her out for lunch. As we sat down she mentioned her respite care. She is going into a facility for 2 nights so I can visit an old friend I havent seen for 10 years. I know she doesnt want to go but I am at breaking point so SHE IS GOING. She then without warning told everyone nearby how I abused her. How I wouldnt let her have her bank cards- last time she gave them to a woman in the street and asked her to get some money out for her and gave her the pin number....hence me taking them off her.How I made her sit in her own faeces for hours well you get the picture. I didnt get up and run out. I sat there and explained to everyone who was by now giving me filthy looks that if they wanted the name of her doctor and my social worker I would happily give it to them. One woman did ask and I quite readily gave it. Eventually we got home ... mum had calmed down. The door bell rang - social worker to see mum without me. Okaaaaay Mum explained her carer (me) is wonderful but her daughter (me) is horrible to her. She also said she didnt want to go into respite, so the social worker agreed she didnt have to. When she told me I thought I was going to explode I was so angry. People say that if you contemplate suicide then you are depressed. The thought of having no life for however long makes me feel suicidal and thats not depression that the hopelessness of the care siruation you can find yourself in when noone else gives a damn
I went with her into the room where my mum is and said I am going away for a couple of months mum I am not well. This nice lady is going to stay and look after you. Oh thats nice dear - said my mum!!! So I went upstairs got an empty suitcase packed a few things and I was off out the door and into the car. The social worker was still spluttering as I drove out of the drive
Something obviously sank in to my mums brain and she promptly (apparently) repeated the morning bowel performance in front of the social worker (and who had not yet summoned any assistance.) Meanwhile I went to a park about 400 yards away and sat taking deep breaths and wishing I had never given up smoking. Calmer I rang the doctor to explain the situation.
The doctor suggested I went back home after about 15 minutes which would give her time to call the social worker.
The day was awful but having cleaned the carpet 3 times today, having eventually won my battle I can now go and have 2 days respite. Mum was lucid this morning and I have explained to her that if she is not cooperative about me having a weekend to myself then I will put her in care and sell her house to fund it. I know I sound cruel and its why I say I hate dementia with a passion but I know noone would give her the care that I do or take the abuse that I do and deep in that fuddled brain she knows it too ....as for the social worker I think she is still trying to come to terms with a faeces handed women coming towards her trying to grab hold of her