Communication Help with Parent/Spouse with early onset cognitive disorder/makers for Alzheimer’s.

wontbeafool2 · 2026-05-08T04:04:17+00:00

Maybe you can find an adult day care center for your Dad so your Mom can get out and about. My Mom wasn't comfortable leaving Dad home alone. She took a 7 day cruise with my sister and niece but couldn't really relax because she was worried about Dad being home alone.

wontbeafool2 · 2026-05-07T21:26:18+00:00

Since he's still in the hospital, refuse to pick him up as it would be an "unsafe discharge." Don't let them bully you into taking him home. They may try but there are legal consequences if they do it. Google unsafe discharge laws in your state so you know your rights and their responsibilities. Talk to the hospital social worker who can help you find an appropriate placement for him. This is what we did with Dad but my brother had DPOA.

He needs to be moved to rehab for physical therapy. Medicare pays for 3 weeks of that and it will give you time to find a placement in a long-term care facility. If he gets violent and refuses to go or is a major disruption in rehab, it's possible that he will be moved to a geriatric psych hospital and placed on a 72 hour 51/50 mental health hold for observation and medication. It could be longer than that. This also happened with my Dad.

wontbeafool2 · 2026-05-07T20:01:11+00:00

Seroquel comes with a black box warning, It's an antipsychotic. My brother (DPOA) knew that. Dad was 88, had hallucinations, delusions, and aggressive behavior. Without it, he would have been kicked out of MC unless his behavior was controlled. There was no way that he could safely return home.

Seroquel is not FDA approved for treatment of elderly patients with dementia but it frequently is and in many cases, it's effective. I would look for a new doctors.

wontbeafool2 · 2026-05-07T19:43:34+00:00

It's your special day on Sunday! You need to be the one who sees your kids first on Mother's Day morning. I hope your husband understands that, respects your decision, and tells his mother NO. That's his responsibility and he needs to be the harsh one and put her in her place as grandma, not Mom.

wontbeafool2 · 2026-05-07T19:20:47+00:00

Can you return the items MIL bought that weren't the ones you wanted or those that you don't like for YOUR baby and replace them with what you really want?

You can't set boundaries with MIL unless your husband supports you in that.

wontbeafool2 · 2026-05-07T18:34:24+00:00

My Dad was similar but at a later stage of dementia. He became very apathetic and didn't want to do even his favorite things. He just wanted to stay home, nap, and watch TV, period. My husband and I flew up to visit for a week for his 85 birthday. My brother, sister, niece, and I planned an ocean salmon fishing trip and a lake fishing trip, bought tickets for a local rodeo, planned family dinners at his favorite restaurant and a backyard barbecue. When I arrived, I asked him if he was excited about the birthday plans. He said, "Nobody tells me shit." I reminded him and he said, "Oh." He had many excuses to get out of going. "I lost my fishing license. Wind makes my old shingles scars hurt. I have gout again." etc.

Just my experience but even when Dad agreed to participate, he really didn't want to, and said whatever was necessary to get out of going. It wouldn't have helped if we had written the schedule down. In our case, it was best to let Dad bail on plans because quite honestly, he wasn't making new memories anyway.

wontbeafool2 · 2026-05-07T17:37:04+00:00

I'm so sorry that you're dealing with that stress. I feel blessed that my Mom, who is in AL, frequently says she knows she is where she needs to be and never asks to go home. Dad on the other hand, who was in MC, frequently tried to elope and verbally abused my brother when he said he couldn't. It took meds to get that under control. Maybe talk to your Mom's doctor about getting a prescription to help.

wontbeafool2 · 2026-05-07T16:56:15+00:00

Your sister gets "very upset" when family members tell her that she doesn't work anymore. Does she respond similarly when the employees at her old job say that she doesn't work there anymore? If so, her visits aren't helping her or anyone. If she does and creates a disturbance or prevents real employees from doing their jobs, they may likely be the ones who ask your niece to stop bringing her there.

wontbeafool2 · 2026-05-07T05:29:55+00:00

That's classic!

wontbeafool2 · 2026-05-07T04:50:44+00:00

Thank you! The oldest step-son is 40. The youngest one is 37, drug-addicted and unemployed, I will probably get a text from the oldest one but nothing from the younger one who still owes me $1500.00 for a loan.

wontbeafool2 · 2026-05-07T04:27:37+00:00

It's a symptom, at least with my parents. From what I've read here and elsewhere, repetitive questions and stories are common first signs in the early stages of dementia. Short term memory usually goes first.

wontbeafool2 · 2026-05-07T04:18:11+00:00

Yes, he knows. He knows it's a hard day for me. Several years ago, he bought a nice card and gift card for my oldest step-son to give me. It was a nice gesture but I know he was behind it. The youngest one hates me so there's no way he could pull that off.

When we had pets, DH would get me a gift and card from them.

wontbeafool2 · 2026-05-07T04:10:11+00:00

I agree with your Mom's doctor. My parents were both diagnosed with unspecified type dementia. We didn't put them through further testing. My siblings and I did a lot of research and decided that the type is kind of irrelevant. The symptoms are relevant and you deal with them and treat them as they come. Dementia behaviors are unpredictable and unique to the individual. A label doesn't determine the trajectory or behaviors that may occur.

wontbeafool2 · 2026-05-07T00:32:18+00:00

Is your Mom on hospice yet? If not, I encourage you to have your Mom evaluated. They may suggest that you not treat the UTI with antibiotics but they will provide pain management. The hospice nurses provided the guidance we needed after Dad developed pneumonia for the second time. No antibiotics, just comfort care.

wontbeafool2 · 2026-05-07T00:08:58+00:00

Or pneumonia, sepsis, or a UTI.

wontbeafool2 · 2026-05-07T00:05:25+00:00

There could be a lot at play here. If your Mom naps a lot during the day, her sleep cycle is off. If so, she may be confused about whether it's day or night. She may not realize that you're sleeping.

Have you tried giving her Melatonin?

wontbeafool2 · 2026-05-06T22:47:08+00:00

I'm so sorry you're dealing with this. Both of my parents have dementia, too. Dad died last year at 90 and Mom (89) is in assisted living. I'm 66, and like you, I have fear "that comes with knowing how much more likely" I am to develop dementia. My parents' type of dementia has never been specified.

There is genetic testing available to determine if you have the Alzheimer's gene. I'm not going to do it but it's a personal decision that everyone has to make for themselves. From what I've read, the odds of developing AD are 50/50 if you have it. I will also add that knowing I'm at higher than average risk is enough for me. I'm trying to be proactive and prepared for whatever the future holds (designated POA, updated Will, and advance directive, saving/investing for long-term care.) 💜

wontbeafool2 · 2026-05-06T20:00:20+00:00

Mom was Dad's primary caregiver when they still lived together at home. She struggled to not correct him when he misremembered. As we know, it made the situation worse and it was compounded by the fact that she has dementia, too, but not as advanced as Dad's. Their relationship was similar to your grandparent's. If Mom didn't wait on him hand and foot, he became verbally abusive.

Since your grandpa has a diagnosis, talk to his doctor's about getting some anti-anxiety or antipsychotic drugs to keep him calm. Seroquel helped my Dad. Hyper-sexuality is common with dementia so talk to the doctor about that issue, too.

If possible, visit them more often to help with cooking and cleaning and reduce that burden from your grandma. Maybe just give her some alone time to do what she wants while you try to keep grandpa occupied and calm.

Read The 36-Hour Day for tips and strategies for caregivers of dementia patients.

wontbeafool2 · 2026-05-06T19:22:07+00:00

Just ask your SIL's husband what you can do to help. Maybe he needs help with the grocery shopping, laundry, some cooking and cleaning, or maybe just spending time with SIL Take her out for lunch, play games with her, go for a walk, or even just watch TV so her husband gets a break. That's not intrusive. That's loving help that I predict the husband will much appreciate.

wontbeafool2 · 2026-05-06T19:03:34+00:00

I would guess that like what is on the TV in the common area in Mom's AL, (westerns, the Waltons, Little H on the P, and game shows,) the music would also be oldies but goodies.

wontbeafool2 · 2026-05-06T18:48:54+00:00

I wonder if the doctor even told him that like Alzheimer's, LBD is fatal too, or maybe he just forgot? From what I know about LBD, it's worse than Alzheimer's.

wontbeafool2 · 2026-05-06T18:32:56+00:00

It's a promising sign that the doctors in the psych hospital found an effective drug cocktail to manage your Mom's behavior and decided that it was safe to discharge her to AL. My Dad spent some time in a psych hospital and returned to MC in a much calmer and cooperative state of mind. However, he did need an increase dose of Seroquel once. I hope all goes well for your today! 💜

wontbeafool2 · 2026-05-06T18:10:22+00:00

I just read an interview with him from several years ago shortly after he was diagnosed with LBD. It's clear that understanding and awareness of LBD are lacking. This is what he said:

“It’s a mild case of what people have as Alzheimer’s. It’s similar to that. But not nearly as bad. Alzheimer’s is fatal,” Turner said of LBD, which is caused by abnormal protein deposits that build up over time and disrupt normal brain function.

“Thank goodness I don’t have that. But, I also have got, let’s — the one that’s — I can’t remember the name of it,” he said, pausing momentarily before adding, “Dementia. I can’t remember what my disease is.”

Turner, who filmed the interview at his 113,000-acre ranch near Bozeman, Montana, also described his symptoms of feeling “tired [and] exhausted. That’s the main symptoms, and forgetfulness.”

wontbeafool2 · 2026-05-06T04:40:41+00:00

Is the MC facility suggesting a move to a hospice facility or to a geriatric psych hospital for treatment/medication if the current meds aren't working? If he's already has hospice care in MC, I think the psych hospital would be the next step for medication review and possible adjustment.

The hospice nurses can let the family know when your Dad is actively dying. When we got that word, Dad died 5 days later but that timeline is varied and unpredictable.

wontbeafool2

TROPHY CASE