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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!!!!

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Jude, what you wrote is a reason that I set a limit on not bathing my parents. We have never been a huggy family. I can't remember a kiss ever passing. My parents wouldn't even hug or exchange loving words with each other. I knew that taking care of their personal hygiene was not something I would be comfortable doing. It is one of those tasks that someone else can be paid to do. This is not a shortcoming in me. It is just how they raised me, so I don't feel guilty at all about it.
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I've always told my mom "I draw the line at the waist" and I have held to that! I do not ever want to ddo any bathing or toilet help. I have helped her dress, wash hair, makeup, teeth, ears, eyes, fingernails, toenails, and knee issues, but I refuse to do anything with a naked bottom.....and she knows it. We sort of have some modesty in our family and nobody intrudes on anyone in the bathroom. Other families might be OK but not ours. For the bowel impaction--is there any stool softer medicine that would eliminate that (sorry for the pun).
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Sorry peeps I am going to vent:- I have to say I hate dementia with a passion. And what is moire I really hate the way it makes me feel about my mum periodically. I KNOW she has always been a vile person and I KNOW dementia only exaggerates her best and worse traits but yesterday she really really took the biscuit. So much so that I actually doubt I will ever take her anywhere again unless I absolutely have to (or if sitting within 4 walls drives me nuts.

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
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Oh, Jude!!! I ran the gamut of emotions reading your post. I admire the way you handled everything. I have to admit I laughed out loud at the mental image of the social worker's face - serves her right for being a dipshit! You are an angel! You need 2 weeks respite, not 2 days!!
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Bless you Dee .....And today the sun shines. not a tantrum in sight despite such a grumpy face earlier I thought it was going to be grim again. She has smiled got me to ring a friend for her had a long chat about utter drivel on the phone. She's eaten all her lunch drunk her drinks had her meds and even managed the loo properly. It's the ups and downs of dementia that frustrate me beyond belief - you never know from one minute to the next what you're going to face and as for the two weeks respite ...shhhhhh but I am having a week in July and another one in December - havent told her that yet ... I'm just enjoying the peace while it lasts. Just a shame she thinks I am her mother today but then again perhaps that is why she is not playing up
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In my opinion mum belongs in a care facility, hard to say that, but dementia like you've described is too much for one caregiver to handle. You have to put yourself first!
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Mallory I sometimes have to agree but I promised my dad that would never happen and he was soooooo important to me its not a promise I would dream of breaking unless it really does get to be too much. care in the UK is not good with lots of reports of abuse so I am also loahe to put into a place where she will not be CARED FOR if you know what I mean
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Boy am I glad to have seen this thread. Mom was complaining about having to help Dad wash his bum this weekend (usually her code for someone else should do this) I totally panicked inside. I can't even believe she mentioned it to me and here is why. Not only were my parents not affectionate Mom instilled me with a dread fear when I was a teenager that my maturing body was something I needed to hide even from my father. One time I forgot to put a bath robe over my flannel night gown and she lost it. Her words were that men can't help responding to the female body and it was my job not to tempt. This was not a religious thing my Mom is sick. I have no idea if she was molested but I do know there was sexual abuse in her family. Anyway I spent my entire teen years terrified I was going to do something that would cause my Dad to be improper with me. He never was but it was still an awful thing to live with. Mom also was repulsed by any attempts at physical affection from me.

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.
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Trying you are absolutely on the money there. The trouble is when the carers dont turn up what else could I have done short of leaving mum in a soiled situation. as for the past is the past - that is such a stupid thing for people to say. In life there are some things we just dont get over, we learn to live with but never truly get over. Emotional suppression is one of them so you stay strong and say no me dear it is your right xxxxx
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I've done things for my mom I never thought I would have to/be able to, including suppositories for constipation. Am supposed to start my mom on an estrogen cream. It's supposed to help with recurring UTIs. I was all for it, then I found out how it has to be applied. I got the prescription filled 2 weeks ago...it's still sitting in the bathroom unopened.
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Gads, now I must google how it's applied.... sigh, the things I now want to know
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Jeanette...just like yeast infection treatment. Yeah. How in the heck am I supposed to do this? I gotta give the treatment a shot, those UTIs are so hard on mom (and me). I'm praying I can set it up and mom can somehow do it herself.
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This is basically what the doctor said: http://health.usnews.com/health-news/news/articles/2013/06/20/how-estrogen-may-help-prevent-urinary-tract-infections-after-menopause.
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dee, if the cream is Premarin don't use it for any length of time... increased risk of developing probable dementia... YIKES.
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Mom already has dementia...uh oh. I'll have to check to see if it's a generic for it. Thanks for the info!
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I won't have any physical contact with my mother, so the hygiene related things go without saying. We also were a very unaffectionate family, and the last time I tried to hug my mother (my father was terminally ill at that point, she had just accepted a hug from my husband, so I thought I should at least try to hug her), she pushed me away. It was a relief, because the idea of touching her makes me physically very uncomfortable, and now I know I never have to try doing that again.
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.
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Dee I am sat here roaring with laughter - I can so see that bathroom cabinet being locked and the key thrown away. Ther is no way on gods earth I will ever do anything like that - I disimpacted my mum ONCE and it aint ever going to happen again I felt so disgusted - the whole thought of dealing with the frontal arena is one step too far ...what am I saying its a million steps too far. Actually now I have read more I am refusing to do anything which is invasive ie if it has to go inside the body someone else is doing it, just in case I do it wrong (thats my excuse and no I dont want to be trained thank you!)
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Someday this will be a humorous memory. Not.
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Oh bless you Dee I do feel for you and I wasn't making fun of you at all. I think it is amazing you can do as much as you do xxxxx
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Soon after I became fulltime caregiver, Mom (with Alz & died in October) lost the ability to move to the bathroom so the bathing part fell on me. Incontinence was a problem too; I mean both kinds.

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.
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Haha I know Jude. I'm laughing too. Caregiving is a character builder for me and I'm getting a workout. Creativedanger I used to kid my mom and tell her if she sh*ts her pants she's on her own...til it happened. Twice. I don't kid about it any more. Probably a good thing we don't know everything involved when we begin caregiving...better to learn gradually.
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Not long ago I was peering closely at my mother's undercarriage looking for signs of pressure sores, having a good old rummage around in the creases, like you do; and became gradually aware that the carer, who was new to our household, was very quiet on the other side of the bed, and then suddenly aware of what the scene must look like to her. I just said brightly "it's amazing what you can get used to, isn't it?"

And Jude, what you did to that social worker was very naughty :) Enjoy your respite!
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Just an update peeps ... I rang the social worker today to ask about something she had said she would to only to find she has handed in her notice ....now I feel extra guilty in case it was me .... I probed further only to find she wasn't making the grade phew. NEXT! I swear they will get me in the end because someday I may need care. Hopefully they will have brought in legal euthenasia by then so I can choose how to spend the last days of my life for I want them to be happy ones not ones where i am in discomfort pain etc and dont know anyone, or where I am or need feeding ...is that so wrong?
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Oh Jude that social worker was obviously in the wrong job. Gotta tell you I still giggle at the visual image. You are such a card! After the day you had with your mom you deserve a few days to yourself...hope you have a relaxing respite.
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You guys had me literally laughing out loud... I suppose it is only funny to other caregivers though ;)
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Yeah, we the members of the caregivers club...our secret password would be "respite"...no one but a caregiver would know what that means. In fact, in 6 1/2 years I've yet to have one other than Mom's hospital or rehab stays. I'm pretty sure they exist though, cause I've read about other folks' experience with them.
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p.s. I'm really afraid that box of estrogen cream is going to expire before I work up the nerve to start the regimen. I'd try it without looking, but what if I miss? Oh, geez....
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I think you should pop some on a tampon. glue the tampon onto the continence pants end on as it were and then pull them up - make sure the glue is dry first cos it could be quite difficult to explain at the emergency hospital!!!!
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My request for RESPITE aimed at any social worker who reads this not that there is a risk of that!
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
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LOL Jude! You made my day.
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