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sillywren Posted January 2016

I feel like I am getting lost in my Father's dementia....

I spend all day keeping him occupied and all the rest.. fed safe etc.  He won't acknowledge his very advanced stage of dementia. I am unable to leave him so I can take care of things. I have to take him with me everywhere and that is not always practical. If I pay attention to any one else...my mom, my kids, the very few friends I have left....let alone talk to strangers to try and conduct business... he gets mean and aggressive and is very controlling. I feel like I am disintegrating myself..... He doesn't qualify for assistance, too much income but not enough to just pay for help. Something he wouldn't do anyways because there is nothing wrong with him. Even tho he remembers next to nothing of his personal history and is delusional about his past. He is starting to lose speech. He has gone from stuttering and word swapping to just not having the words and being unable to speak when he wants to say something. His appetite has significantly decreased, he refuses to go to doctors or take meds. He gets fatigued quickly and gets out of breath easily. He is starting to shuffle his feet also and is starting to fall. I need to be able to get out occasionally and do things, talk to people take care of business. But I don't know what to do. My middle daughter has offered to help and spend time with him so I can get away....but she has a life and never follows thru. And I don't feel right insisting she do it. I am the only surviving child so there are no siblings to help me. He has driven away any and all friends/mates he has ever had with his horrible personality long before this came along. My mother has advanced MS and needs my help too.

sillywren Jan 2016
I have tried...he is not the least cooperative and has never been a social person. I believe he has Asperger's syndrome like me and my son. Sigh. He is neurologically an absolute train wreck with a very strong personality.

caregiver75104 Jan 2016
Take him to adult daycare. Call his insurance and see if they will pay for it. Before my grandpa went to live at a nursing home and he was under my care, i signed him up for adult daycare and his insurance paid 100% of it. It was a lifesaver for me and it benefited him so he could be around other people and do activities there.

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PhoenixDaughter Jan 2016
You may also want to talk to his doc re covert medication especially if he is bipolar or psychotic. You are not trained to do 24/7 care none is and in this case hun you will burn out long before him. Seek help ...please. Vstefans, as always, is spot on in their response

vstefans Jan 2016
Sillywren. Breathe. You are not silly in the least. This is a big hairy mess and its going to keep getting hairier. What you are describing is either Lewy body or frontotemporal dementia, or garden variety vascular dementia with parkinsonian features. If he is over income for Medicaid, see an eldercare attorney about setting up a Miller trust. Now, you may ask, when am I supposed to do that when dad wants me paying full attention to him every waking moment? Yes you really do have to get some respite and care for you, and yes, you also have to get the ball rolling for someone taking over his decision making for the things he no longer has the judgement to decide. You - and he - absolutely have nothing to gain from you burning yourself out trying to let him have his own way in things where that really is not practical. He is going to be angry no matter what you do or don't do, because he has zero insight and has probably blamed others for anything and everything that is wrong all his life - that's not going to change now. This is not the kind of eldercare one person can handle solo 24 x 7 x 365 - not to mention trying to help your mom who, fortunately, lives safely away from him. You will have to have much more help and possibly out-of-home care to manage this whether he likes the idea or not.

At some point, there is a real possibility that your best option will be to get him to the ER after he falls or injures himself or someone else - hopefully not severely - and explain to the social worker that you can no longer care for him in your home.

sillywren Jan 2016
Thank you for listening and commenting. And yes I SHOULD do that... but we have done the doctor routine. My father was/is an alcoholic with violent tendencies. I am apparently the only one at this point that can handle him. Sigh. He may have been bipolar and I am almost positive he is where my kids and I get our exceptionally high functioning autism from. Nobody ever offers. Except the one daughter that is epileptic and doesn't drive. My dad lives with me and my mom lives on her own 20 miles away. He has/had a 150 plus iq and is a suspicious sob. Tricking him isn't that easy. I usually end up having to bully him. He has had bad reactions to every med we tried, most make him more aggressive. I think I am just going to have to get a little more insistent about my middle daughter helping. She is the only one he other than me he behaves for. On the rare occasion I leave him here with my 18 year old son all i get is a barrage of oh boy is he pissed messages. I am hanging as tough as I can. lol Thanks.I have spent the last 2 days trying to come up with excuses not to drive him "home to Nebraska". He is operating under the delusion that he owns a half section of farm land in his old home town with a house and barn and all the accumulated paraphernalia. Sigh. He left there at 18 and never looked back. He was a machininst for the airlines and we always lived in the suburbs. He has never owned ANY farm land. Spent the last 22 years down here in florida... Ah well... If I can get my daughter to spend the nght one night soon I am going to go the clinic and see if I can get some help for depression. Hopefully that will help. Again, thank you!

Mincemeat Jan 2016
Where do your parents live? With you? IMHO you should schedule one day a week as your errand, go have lunch with a friend day and have an in home caregiver come at your parents expense. If they dont like it...too bad. It also sounds like your father needs a full exam by a physician pronto. Trick him if you have to. This is where you can enlist the help of your daughter. Medication and some medical and home care support will make this more bearable. If family and friends offer to help, take them up on it and assign them a time slot and specific day. Hang tough!

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