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Frustrated and sad! I am my dad's main caretaker, though I live in a different state. Over the last year, which was also the first year of my marriage, I've spent almost half my time away from my husband and career to get my dad's life in order and make sure he has care and that his needs are being met. It drains everything from me but I do it for love and care of him.
I took him for memory tests in January and he was diagnosed with early/mid Alzheimers. If you have been following my posts (if not, you can take a peek) I've had serious issues battling his 3 other adult children who came out of the woodworks after my stepmother passed and they caught wind of a small life insurance policy. Now, after being largely absent for decades (my father and their mother separated in the 60s when they were kids), they flatter and dote on him as in King Lear. He loves the attention. I am the one who actually does all the work and turns my life around for his care.
After spending two exhausting weeks this month with him, dealing with everything from flooding toilets to health care to soliciting and interviewing new housemates, etc. I left for a short and much needed self-care trip with a friend. A couple days later he emailed one of the other daughters saying something like "I've somehow alienated xxxx [me], and I won't be surprised if I don't hear from her on my birthday." This email was then circulated around to the 3, and even to my aunt, as if to say, "see, look how he's being neglected" or whatever narrative they like to spin about me.
I then asked him today, which is his birthday, why he would say such a thing and that it made me sad he thought that, and he said "I would never say something like that. I have no reason for saying it! They've never heard anything like that from me, that is positively certain!"

Bottom line, and I'd love to hear from those who have dealt with dementia moods and their loved one saying different things at different times to different people:
He says something dramatic and quite alarming to one person, then forgets and denies he said it a day later. Meanwhile it's created a rift and damage which richochets. This has been happening for months and it's horrible. Has anyone else dealt with something like this?
Any advice?

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Dear Bettina,
I am so sorry for what you are going through. I can relate to so much of what you said. More and more lately I long to go back to just being a loving daughter, as all the stress and awfulness of the situation that has developed as a result of his dementia and of the other children's meddling has been a total life suck.
Sending hugs.
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Reply to sunbrooke
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Bravo to the phrase “voluntary ignorance.” My aunt and I tag-teamed caring for my mom (aunt’s sister). My aunt refused to believe the truth about mom’s decline. I talked aunt through the gazillion forms of dementia that suck away reasoning skills first. I gave her reading materials. Nothing sunk in. So frustrating. Aunt kept insisting that mom was her old 1980’s self, just frail and full of “anxiety.” Jeebus, after 3 years of this round-robin, MY anxiety was the only anxiety worth talking about!

And yes, the old folks we are shepherding will show different “sides” to different people. Mom made a chump out of me more times than I could count. I know with dementia, you’re supposed to believe it’s all out of their control. Ehhhhh. Kind of but not really. When they are still functional and semi-functional, they can aim the super-show or the super-bomb at exactly whomever they choose.
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Reply to BlackHole
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Hi shakingdustoff, he does have full time care at his house. I say I am his main caretaker in that I am overseeing everything, go monthly (for two weeks/months sometimes) and am on the front lines of every decision and POA for health and finance.
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Reply to sunbrooke
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I've had same situation. Very mild, mostly situational dementia (ie when tired)
I think he does it for all the extra attention, and the others buying into drama
do it for possible pay out--either monetary or just enjoying causing trouble. I've
helped father for decade and gone without vacations to help him with countless
health crisis and end result is being continually chided that I don't do enough.

He frequently stirs up trouble with his gossip about me. The main thing is his
addiction to attention. He essentially needs constant attention and being in the
middle of a drama provides that. The other thing, and here I'm just conjecturing,
is that he does not want to be obligated to me in any way. If he totally minimizes
my efforts, and further implies I'm neglecting him or worse absconding with his
funds, he's free to bring in someone else. Maybe a verrrry late life romance. And
he'd like the freedom to cut me loose without feeling any guilt. This is just a conjecture
from him talking about marrying a woman over 50 years his junior!

And ditto about the relatives and other "friends" who don't do any meaningful help
(ie anything more than a very occasional hour here or there) but suck up to him in over the top manner. Somehow they seem to know all about his finances. They also pry into my personal business which he is all too happy to reveal.

It's very disheartening, but many people appear to be mainly driven by money and some are into gaining social leverage through malicious gossip. It's an ugly side of human nature, that especially rears it's ugly head with aging seniors who have even a small amount of $$. Don't hear this kind of drama with poor seniors for some reason :/

Ive contacted an elder care lawyer for advice-mainly because I've been questioned
so many times now by others, I've started questioning the decisions I've made on
his behalf. The whole thing makes me sad, and its destroyed any hope I had for a
close genuine relationship.
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Reply to bettina
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Yes. Both my parents have involved relatives and friends and the law in their delusions. I wonder why people are so very eager to believe the crazy stories and want to believe that the caregiver daughter and granddaughter are just evil? This has alienated me from all my relatives. I don’t forget their mischief and interference. I was going to have MY grave in the family cemetery but I’ve changed my mind. I’ll never see any of them again after this caregiver gig is over.
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Reply to HolidayEnd
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It sounds like your step-siblings don't understand dementia, either through voluntary ignorance or just a lack of information. I'd start sending them some short articles on dementia or send them to Youtube to watch some Teepa Snow videos. And ignore their criticisms in the meantime.

I second the idea of moving your dad closer to you. My parents lived 200 miles from me and when they hit their 80s, I'd get frantic calls to come help. It was killing me with stress. I asked them to move near me and they did. There was still stress involved, but not nearly as much when they were 1.5 miles away from me. I could be with them in five minutes instead of driving for four hours.

Hang in there, this is a marathon and not a sprint. I took care of my mom for 15 years and my dad for 9. I had to learn to pace myself and give up my inherent perfectionism. I also had to learn to forgive my brother for his lack of help. My anger at him was killing me for a couple of years until I wised up. What you're doing is one of the most frustrating, stressful and gratifying things you'll ever do. We get it. So come back here often to vent or update us on what's happening. {{{Hugs}}}
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Reply to blannie
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Thanks, Ahmijoy for the kind and encouraging words. It does help to know this is common. Warm wishes to you.
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Reply to sunbrooke
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I know how difficult this is. It’s that difficult for all of us who have a loved one with dementia. We often say that our LO has a “broken brain”. I think what’s bothering you isn’t so much what he says, it why he’s saying it. You obviously are very close to your dad and dedicated to him and it’s not easy to accept that the person we love is slipping away from us. Don’t worry about what others think. People who know your dad will realize something isn’t right. Don’t hesitate to fill them in on Dad’s diagnoses. Good luck to you. Come back often. There are plenty of people here who really care.
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Reply to Ahmijoy
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Ahmijoy he only speaks with close friends and family. He does not have a wide network. I wish everyone could realize it is the disease speaking and I am working on not letting it get to me, but I haven't gotten there yet.
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Reply to sunbrooke
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Is your father speaking with just close friends and family? Or, does he have a wide social circle where he makes these outlandish remarks? As his dementia progresses, people he speaks with will come to understand he has this disease. Your step-siblings sound like a fine lot (not really) and I wouldn’t worry what they think or say about or to me if I were you. Being reasonable is not in the nature of the beast with this disease. Behaviors range from anxiety and self-pity to downright abusive actions, verbal and physical. He may not even remember exactly what he said to whom and his first reaction when confronted is to deny, deny, deny. If there is any “normal” with this disease, this behavior is normal.

I admire you for your dedication to your father. And I admire your new husband for supporting you. Have you ever considered moving him closer? Is he in a facility or does he live on his own?
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