Situation: 94 yr. old always-verbally-abusive mother with one year diagnosis of Lewy Body Dementia. Lifetime history of undiagnosed/untreated emotional/personality disorder with angry outbursts and paranoia that affected every family member, but she "ruled the roost". I got out early, got counseling, was able to maintain a semi-okay relationship over the many years. She was a good grandmother to my children.
Started noticing memory problems, poor decision making and increasing paranoia as long as 12 years ago in looking back at things. (We were told this is how insidious Lewy Body Dementia can be!) Deficits became more noticeable and more pronounced after Father's death 10 years ago. Mother refused any and all suggestions, both from family members and her PCP, for medications that perhaps could have helped (Aricept). As only child in town (one sibling thousands of miles away) I provided all support/transportation for health care, family gatherings, etc. for both and then for her alone. Eventually my children both began to help me out with this at times.
Within weeks of Father's death delusions began. Did not know what I was dealing with at first. Tales of obscene telephone calls from an old neighbor. But would not allow notification of the phone company about this. Tale of receiving call "from a friend" that she should not mourn my father's death (which I had not seen any evidence of anyways) because he was having an affair. (Never would I believe this). A story that my father was a drug dealer, selling his pain pills out of the car while she was in the grocery store. That the people he was selling drugs to were calling the house asking for him. Bizarre stuff.
BUT, I am the only one she "shared" with, at least for several years. So, for a while, other family members thought she was "okay", despite me describing these things. They laughed and lovingly referred to her as "always kind of nuts".
Yes, I discussed it with her doctor. He suggested medication. She refused. He said "I can't force her to take medication". So there we were.
About two years ago, she started into delusions, which she began sharing with the others. Deeana is coming into my house and putting things into my closets. Deeana came in and tore up my will and left it laying on my bed. I woke up last night and Deeana was in my living room. And they just kind of laughed. At this point I insisted sibling talk to doctor. Doctor suggests meds, she refuses, etc.
Still taking her for lots and lots of medical and dental care. Verbal abuse and paranoia increasing. But ONLY directed at me. I now realize I have taken my father's place - she was just awful to him for as long as I can remember. I'm remaining calm for the most part. But am denying I have snuck in and stolen her hair dryer and left more things in her closets....
A year ago hallucinations began. Seeing dancers in costume on her front lawn. I call her doctor and make appt. for her in two days. Son goes over that night to sleep on her sofa and see if maybe she is dreaming this. She isn't dreaming. "She seems fine except she is seeing things that are not there" he says.
Doctor sends her from office to hospital for admission. Geriatric psychiatrist diagnoses LBD within 2 days. She is pissed off, denies any problem and tells anyone who will listen that Deeana is just making up lies about her and wants her money. Also states I have stolen money from her. (I have not) Placed on medication and (unknown to me) released TO HOME! Son took her home, "made her comfortable" and left. Of course she fell that night. Broke hip, hospital, rehab, and then assisted living ever since. She recovered from hip, got better enough on meds to be fairly okay. No hallucinations, paranoia still present but decreased and not as aggravated. I was visiting regularly.
Then noticed increasing aggravation, verbal abusiveness with me and workers. Requested psych consult thinking med review was in order. Then learned she had been refusing psych meds for over a week. I visited, pleaded with her to take meds. "No, YOU just want to control me. You want my money! You've stolen from me and you will do it again! Get out of here! I don't want anything to do with you! You've always been nothing but a troublemaker! Get out, get out of here!
I did leave, of course. And when I called to talk to the Social Worker I was told that mother had removed my name from them being able to discuss her condition, her meds, or anything else about her.
That was 6 months ago. I have not gone back. And I don't intend to - unless I was assured she is medicated. Out of a wish to preserve my own mental health. Something inside me just clicked that day. And my gut told me to not subject myself to this any more, ever.
So folks, even when it's dementia, there does come a limit to human endurance.
I wonder if anyone else has experienced anything like this?
Sadly,
Deeana
I got a lawyer and he gave me very good advice. He said you can't make your mom like or love you. She has already revoked your POA, wrote you out of the will and told you she doesn't want to see you. If you push her, you aren't going to like the results. He told me he sees it everyday.
Unless you've been through the ravages of a mother like yours or emjo's or mine, you will never get it. The hurt of hateful words from your mother is like a stab in the heart. Being rejected at any age is beyond description. Whether dementia is involved or not, those words aren't easy to deal with. Sometimes you have to walk away whether dementia is involved or not. I'm so sad you're going through this. I'm sad for emjo too.
And yes, throughout life there were times of no contact - for as much as a year one time. I can well remember my poor father sneaking over to my house to see his grandchildren. How sad when I think back on it.
The last time I ever spoke with my Dad before he died we talked about her and he said, "Deeana, you have no idea. This woman is nuts! I can't even believe the things she accuses me of." It was Christmas Day and we were outside on my deck having a cigarette together. I was concerned for him - because I knew she was not right - I asked him if she ever got physical with him, if she ever hit him. He said, "No, it is all verbal. And it is awful." When I asked how he handled these outbursts he said he just walked away and that within 10 minutes she would have forgotten about it. Although I did not press him on it, I now assume she was either accusing him of infidelity (he was 85!!) or being a drug dealer.
A kind, lovely, and long-suffering man (they didn't get divorced in those days, and I actually think he loved her) he died two weeks later of a sudden heart attack. And get this - my mother was MAD AT HIM for dying! Oh, yes. He was her chauffer. The woman dropped about three tears at the funeral and that was IT! And I got to be her chauffer for the next two years until I introduced her to Senior Transport. Oh, and how she wailed about that! How it showed everyone how little her family members thought of her if she had to take "public transportation". I held firm and she managed somehow to endure it.
101, huh? Yep. I've often said "I'll probably be dead before you are, mother."
I think that those of us who did NOT have that idyllic childhood, that idyllic mother/child relationship - for whatever reason, but emotional/mental disturbance likely enters into it, whether diagnosed or not - face different issues at the caregiving stage. Especially when dementia enters into it.
I suspect that for many of us, it isn't that we didn't WANT to have a better relationship with that parent. And if you are anything like myself, you tried and tried over the years. You worked on yourself. You compromised. You hid a lot of things. Including from your own children.
And now - here it is, back again. And now it can't be hidden anymore because of the dementia. So you must deal with things like, "Mom, I don't understand what's going on. I went in to see Grandma today and she swore at me. Mom, it was awful!" And then with a look of extreme pain, your daughter looks at you and says, "Mom, she called me Deeana today when I was in there."
Sincerely,
Deeama
(((((((hugs))))) I understand. You are doing the right thing.