Feeling hopeless & overwhelmed

Ash_95_

Hi everyone, I’m new to this forum and I’m reaching out because I’m feeling overwhelmed and hopeless. My family lives in Louisiana and have been struggling with my dad’s Alzheimer’s diagnosis since 2018. He’s now in stage 7, and at this point, he no longer recognizes my brother or me. The only person he seems to recognize is my mom, and he’s most comfortable with her.

Physically, he’s doing okay—still walking, eating on his own, and his checkups come back positive—but his mind is so far gone. He has frequent hallucinations, uses the bathroom in inappropriate places, and collects random items, including once taking my phone and hiding it in his pocket. It’s heartbreaking to watch him decline, especially when it feels like there’s nothing we can do to help.

Lately, things have gotten worse. He’s now exit-seeking, wandering, and even becoming violent. He hurt my brother last week, and his agitation grows more intense with each visit. A new anxiety medication seems to help a little, but he’s still irritable. I live out of town, so I try to help by watching him when my mom and brother are at work, but I’m on edge the whole time. My mom is the only one who can calm him; when she’s not there, it’s like he’s just waiting for her to return.

I’m at a loss for what to do next. Our social worker from the home health service hasn’t been very helpful, and despite my efforts to research options, I’m struggling to get clear answers. We’ve looked into nursing homes and care facilities, but my dad doesn’t have Medicaid yet, and we’ve been told he needs to be admitted first before Medicaid can start evaluating his eligibility. But if he doesn’t qualify, we’ll be stuck with a $7,000 bill, which we simply can’t afford.

To make matters worse, my mom is considering quitting her job to take care of him full-time. My brother and I are prepared to help with bills, but the biggest concern is finding insurance for her. I’m under the impression that if her income is $0 and my dad receives about $1,700/month, she might qualify for Medicaid, but I’m not sure. I did a quick estimate on the MarketPlace Health insurance and it was showing nearly $1,800/mo for her to get insurance!! I broke down seeing that. There are so many variables, and it’s all incredibly overwhelming. I’ve been struggling with severe brain fog and exhaustion this year, and it feels like I’m running on empty.

I feel guilty for having these emotions, especially knowing that my mom and brother are living with him every day, but the financial strain, emotional toll, and uncertainty about the future have become too much to bear. I just don’t know what the next step is.

SusanB-dil

Hi ash95 - welcome to 'here', but sorry for the reason.

First off, nobody needs to be getting hurt. If/when that happens again, do call 9-1-1, tell them the situation, and have him brought to a geri-psych facility. There, they can adjust and find the right dosage of meds to get that violent agitation dialed back.

Does mom have DPOA and HIPAA accesses?

You could also check with hospice to see if your family could qualify for some help with him.

I am not sure if, after getting the proper meds, if you can tell them that he cannot safely come back to his home and have proper care, if they could help you get into a memory care facility. Someone may chime in with more info on that, but it is something to think about.

I'm so sorry your family is dealing with all of that. Yes, it is hard to see a LO in such a state, and no longer recognize you and other family members. So please don't feel guilty about all the emotions you are feeling. This disease is absolutely horrid!!!!

editing to add: squirreling and exit-seeking/wandering/eloping are not unusual. We knew my grandmother was hiding things. After she died, and grandfather was moving several years later, we still found odd things, wrapped in twisted tissues, in very strange places.

Do check back, and on other threads here. There is also a 24/7 line if needed. You can see below, but it is 1-800-272-3900

mabelgirl

I just did a quick google on Medicaid in your state because it didn’t seem right to have to be in a home before getting assistance. What I see is if you do go into a home Medicaid sends a letter on ways to apply but does not indicate you need to be admitted. I think your mom should get to an elder attorney to help with this. I did my mother’s Medicaid and other programs for her myself but she didn’t have a working spouse. If your mom can’t afford one have her contact elder affairs at social services or your local area agency on aging. If like FL those tend have long wait lists, though.
If your father becomes violent you guys need to cal 911 for help. A PWD that is violent is dangerous situation. It’s best for all involved to get help.

Prayers for quick assistance.

Ash_95_

https://alzconnected.org/discussion/comment/229950#Comment_229950

Hi Susan,

Thank you for your support and guidance!

My mom doesn’t have a (DPOA), and that’s been another point of confusion for us. We’ve been told by several attorneys that, as his wife, she doesn’t need one. However, when it comes to medical decisions, we’re constantly told a POA is required. We’re considering consulting with a different attorney to see if we can get more clarity, as perhaps we just didn’t seek the right type of legal help.

In addition to the financial concerns, another challenge in placing my father in a care facility is my mom’s strong reluctance. She feels that no one could care for him the way she does, and she’s determined to keep him at home for as long as possible and stated he will pass quicker if he is no longer in her care. She believes he’s still managing well since he’s mobile and eating. Unfortunately, my brother and I have not been able to convince her otherwise.

While my father wasn’t always the easiest person when he was fully himself, my mom has always been his source of calm. When she’s around, he’s much more at ease. We worry about what might happen if he were placed in a facility—he will likely be in a constant angry, combative, or overly sedated state. It’s a tough situation, but we know that something will need to be done if his condition worsens.

We’ve had several discussions, and my mom has decided to continue working through the end of the year. She plans to take FMLA leave—mainly to keep her health insurance and give us time to sort out the details and finances. She’s also been dealing with rheumatoid arthritis, and her doctor recently advised her to quit her job altogether. While my brother and I always assumed we’d support her, we didn’t expect it to happen so soon. But we’re committed to getting through this and figuring it out together.

Thanks again for your kind words and advice. I’m feeling more at peace now and hopeful that we’ll find a way forward.

Ash_95_

https://alzconnected.org/discussion/comment/229983#Comment_229983

Thank you Mabel!

I am just learning Elder Attorney's are a thing and will be looking into this. My mom plans on leaving her job Early next year so I think that will help with a lot of the income restrictions etc. that medicaid tends to have. She doesn't make much but I do think her income with my dad's social security puts her slightly over those limits.

While 911 is always an option should he get violent again, I'm afraid my family wouldn't be willing to do that. My brother shook off the hits (although it did hurt him) and my mom would never and certainly would lose her mind if we ever did. I will add this fight happened because my brother was in the bathroom and my dad ran out during that short time, he tried to pull him back in the house and that's when the fight started. Otherwise I don't think he would get physical with anyone unless promoted (i.e. my brother trying to pull him back in the house). Mentally I would rather not deal with the repercussions of law enforcement getting involved even if it's the best thing to do. He eventually always calms down/exhausts himself when he has episodes.

My gut tells me we're close to the end (I actually planned my wedding in 3 months and recently got married just because I could feel it, luckily my dad did walk me down the aisle and i'm thankful for that). Until my mom says she's done this is what we'll have to do.

Thanks again for your advice and prayers!

harshedbuzz

@Ash_95_

This is tough stuff. In dad's dementia journey, some of the hardest issues to work through came from my mom's denial, ignorance and insistence at having things her way.

Please urge your mom to have a Medicaid planning appointment with the CELA prior to quitting or taking early retirement. There are ways to shelter funds and it's likely her retirement saving would not be included in any formula for Medicaid, so it might be prudent to stay at work lest she impoverish herself beyond your dad's death. Getting back into the workforce at a certain is not guaranteed.

Another thought is that behavior is communication. If your dad is agitated to the point of aggression, you should consider medication to dial back the big feelings driving this behavior. At this point in his dementia, he no longer has tools at his disposal to process them more effectively. Getting a handle on this would improve quality of life for everyone.

Your brother and you need a solid Plan B should your mom be unable to continue because of illness or if she's one of the unlucky 1/3 of caregivers who die first. My mom fought me on placement, but I toured anyway and had a SNF that would take him on the fly and a MCF picked out a week or so later when the paperwork for admission was completed.

At the end of the day, I was able to force mom's hand by telling her I would place dad in the first available setting upon her death, so if she wanted to pick, she'd need to act. That worked for me. Alas, I didn't convince her early enough to avoid a preventable medical complication that cost mom the vision in one eye. This has resulted in her not living her best stage 8.

HB

Ash_95_

https://alzconnected.org/discussion/comment/229998#Comment_229998

Thanks for your advice! There seems to be only 1 CELA in town and I've reached out this morning to get an appointment set up. There's so much we don't know and I'm hopeful we'll be better prepared as result of meeting with one.

We have a nurse who comes twice a week to check on my dad and she's gotten us some meds that have helped since the situation.

I've found a few homes with memory care units accepting new patients, just need to work out the medicaid piece to get them to cover but I'm hoping the attorney can assist with that.

My brother and I haven't had any luck forcing her hand, we've really tried. My husband is going to make an attempt, he does well with talking people through these sort of things so I'm hoping we can reach a better conclusion. I'd hate for health to decline even more (than it already is) as a result of being his primary caretaker.

H1235

If your mom retires and all their money goes to caring for dad where does that leave her when he is gone? She may be putting you and your brother in a difficult situation down the road as she becomes elderly and unable to care for herself. You definitely need an elder law attorney! Some people actually do better in AL or MC than they do at home. They sometimes respond better to help with showering and other things. Facilities have staff that are trained to handle aggression and difficult behaviors. Family tends to be more emotional making things more difficult. A facility is a safe environment, no stoves to turn on, stairs to fall down, etc. A family home is not set up to care for someone in his condition. If there was a fire could your mom get him out of the house in time by herself ( what if he decided he wasn’t going to leave)? If he can at times be aggressive, is he taking medication? I know 911 seem extreme, but it may be necessary. I would recommend any guns or weapons in the home be removed. A stay in a geriatric psychiatric hospital might be necessary to get medication figured out. If 911 were called I would insist on a transfer from the hospital to geriatric psychiatric hospital. Just some things to think about. I hope you can get things figured out.