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I feel lost: We don’t have a diagnosis yet

Caregivers: Dementia | Last Active: Sep 2, 2023 | Replies (23)

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@anotherday

Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years ago and started researching, trying to figure out just what was going on. He's withdrawn from any social experience with the occasional phone conversation that he's willing to be a part of. We used to travel in the motorhome quite a bit, that came to a halt in 2014. We attempted a car trip in 2016 but when we reached our destination he refused to leave the hotel except for the event we went to attend and then to come home. With this said, this has been going on a long time.
I have noticed that certain supplements really do make a difference. Are we allowed to talk about those here? They may help someone else who's also in my situation. Diet is extremely important as to his behaviors and moods. Seafood for the omega 3's a couple times a week makes a noticeable difference. I've also noticed that what he watches on television or listens to via podcast or whatever I set up for him on the computer has an influence. I just went back up through your list and saw about the open communication with spouse...I've tried. He is in complete denial that there is anything wrong. I've had to quit leaving him here by himself, he gets wayyy out of sorts when I leave for any time. With that said, I have made it an unwritten, so to speak, rule that he has to go with me each Wednesday so that we can take care of whatever business and shopping needs to be done. He gave up driving on his own several years ago, but every now and then thinks he should be driving again. You're right - I need to be keeping a journal of his changes. I feel like the frog in the pot of water coming to a boil. I've been adjusting to these changes over time and have become used to them. I've reached out to family and friends, so far not a one has stepped forward to offer any help other than I can text them for a call when I sense that my husband is going violent again. They will call and talk to him long enough that it diffuses whatever situation and before they get off of the phone he's settled down or forgotten what he was so upset about. I guess that's something I should be really thankful for. I alerted our doctor when he began threatening to kill me. I've also made a believer out of my hubby that if he physically attacks me ever again he will leave here in handcuffs. I say made a believer because the last time he attacked me it was severe enough that it took months for me to heal. I moved out of our bedroom to the upstairs and have set up an almost apartment for myself complete with doors that lock. Sidenote on the door locks, our house shifts from season to season. They don't always latch. I found a lock that perfect for this situation and it can't be kicked in. At least not readily. I'll gladly share the lock name and where you can get it if anyone needs that information. It's been well over a year and he still wants me to come back to our bedroom. He's never attempted an apology, says he doesn't have anything to apologize for. As far as his functioning - that's somewhat difficult to gauge. Most days he gets up between 9:30 and 10:00, puts the bird feeders out, (we have bear) spends the day in front of the television until around 4:00 or 5:00 then wanders outside to water his little garden, pots of vegetables, and feed the deer. Otherwise, he's constantly calling out for my attention. Every few minutes, sometimes seconds, it's Hey (insert name here) , and wants me to see something or hear something he's seeing on television. If I'm in sight of him watching television and he loses interest in whatever show, he then takes it upon himself to shadow me, wants to tell me how to do every step of every project I may be trying to accomplish. Very annoying. Maybe one of you can explain the hyper talking thing. He gets to talking and just doesn't seem to be able to stop and gets furious if I even try to insert anything. I've put all of this in writing and handed it to our doctor. Our doctor and I have tried to convince hubby that he needs further testing, hubby absolutely refuses. Hubby is sure if he gets anywhere close to a hospital they will kill him. Yep, paranoia to the nth degree. Everyone, including me is out to get him and take all of his $$$. Hospitals became a done deal with him through the covid thing, he won't go anywhere close. So where we are now is that he will not allow himself to be diagnosed and I live in hell a lot of the time. Don't get me wrong, we do still have times where things are a little less stressful, but the absolute personality changes have been hard, to say the least, to handle. I've been all over everything I can access to do with brain changes, Alzheimer's, dementia, schizophrenia, etc. Our doctor is leaning towards dementia. I haven't been anywhere without him since last Winter, have had zero breaks, he refuses anyone coming in so that I can leave for a couple hours even to go get my hair done. Suggestions are welcome and thank all of you for your most valuable input. Wow, I think the dam just burst, I just reread what all I wrote and am sitting here bawling like a baby.

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Replies to "Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years..."

As I read your post I saw my husband and myself in some of your descriptions. My husband was diagnosed with lewy body dementia. He had the lumber puncture test which told us definitively what the diagnosis was. My husband is angry. He is on zoloft to help with his moods. He sometimes quits because he read not good
for you. Then I have to get him started up again. He also tells me it is my fault the neurologist said he had to have a drivers test and one every 6 months because of his disease progressing. It my fault for alot of things in his mind. I feel for you and hope you are able to take care of yourself.

Sounds much like our situation from about 2014 also. Keep giving doctors journal notes. When my husband got too violent he has no choice but to live in memory care but does not accept it and he wants me there all the time. It is still horrible. My next step is to not visit so much. He has no friends left and no family nearby so no one visits him. The aides say he is “better” when I am around and they and him are apprehensive when I leave. So difficult. Of course, the top people say he is doing great as they want the money. It is his second placement. If it took months to recover he should be placed. IMO

anotherday, I read your post several times. I am so sorry for your hard hard days.
If you have to lock your door, you have been attacked and badly hurt, and your hubby has threatened to kill you please try your hardest to get him to a neurologist, or a doctor can refer you to a neurologist upon your request. (Sounds like this may be too difficult to get him to do.)
If you are threatened again, please call the police. They can take him to a hospital to be evaluated. Document the abuse, attacks, threats and paranoia and personality changes to give to whoever will be evaluating him. A hospital has social workers who can help you understand what all your options are going forward. At the very least, there are medications for violent tendencies and paranoia.

Your safety far overrides any strong objections he has to not get evaluated and to get the care he needs.

In my very unprofessional opinion, "leaning toward dementia" is not an evaluation and not helpful enough to get the professional help it sounds like you and he desperately need.
Please let us know how you are doing.
All my very best to you.

Hi @anotherday, My heart goes out to you as you are living a nightmare. Please, if he attacks you again, do not hesitate to call 911.
The Alzheimer's Association operates a helpline 24/7 that is staffed by counselors: 1 -800-272-3900. Maybe a consult would be helpful.
Wishing you the best, and some peace.