It's time and I don't know where to start

texoma2808 · February 8

I know it's time for memory care. I always thought it would be because I couldn't handle him physically any longer, but it's the emotional, mental issues that are becoming too much. Our PCP and several family members are telling me I can't go on this way.

The physical danger is increasing, he doesn't recognize me as the wife he loved any more, just the person standing in the way of something he wants or somewhere he wants to go. He's starting to grab at me to make me move or tries to grab and twist my hands if I have something he wants. He's angry and sarcastic and just an all-around jerk. No UTI, meds don't seem to help. His poor brain is just damaged almost beyond control.

What hurts is that I still have a few hours each morning of calm and compliance. No anger, no anxiety. Confusion, yes, but I can handle that. As it is now, by 2pm, I don't love this man he's become, he is not the man I married. I'm just really, really tired and don't know how long I can do this.

But I don't know what to do first. Do I tour facilities, then see how I'm going to finance it? I have an appointment with a CELA later this month to talk about Medicaid rules and qualifying. I also have an appointment in late March with the VA dr and hopefully he can get the ball rolling for me there. I feel a sense of urgency but don't know how to start. Maybe I'm just stuck because I don't want to do this.

I'm stressing over my future and stressing over his future. Or maybe I'm just stressing over everything. I'm a planner and I don't know how to plan for this. The big question mark I see for my future is terrifying me. I know that sounds selfish, but hubby's future has been determined by this awful disease. He would be horrified if he knew I may have to practically destitute myself in order to take care of him. But I want and need him to be taken care of properly.

I'm sorry, this is kind of rambling, I'm venting and asking for advice at the same time. I sign off with "don't forget to breathe" but I am forgetting right now, panicking and not breathing very well.

Thanks for "listening",

Texoma2808

Jgirl57 · February 8

Your anxiety is definitely coming through. Yes, be sure to breathe. I think once you have the CELA appt completed you will have a better map for the next steps. I do understand the angst about planning for your own future and it is something I think about everyday. I have toured a few places so I have an idea of where I would place my HWD/alz. when needed and after another CELA visit. Facilities have a lot of admission steps so call a few and get some of that info. I am so sorry you are feeling this way and others that have been through the placement process I am sure will comment. I hope you are able to rest tonight

TyroneSlothrop · February 8

Texoma, I am also on the verge of placing my DW, and I recognize my own feelings in your story. There are moments when she is happy and playful (in a toddler-like way), but also periods when she is mean, suspicious, and angry. I work at home, and she has a daily companion, but still she interrupts me frequently, with needs, or nonsense, and she cannot be left alone; it is exhausting.

I have visited 12 MC places over the last 6 months, and have narrowed my search to 3, going back for a second visit. They want a “602”, and will do an evaluation either by visiting our home or me bringing her there. I dread the next steps: crafting the lie; delivering her; and losing her from my daily life (already happening, of course). And the cost is not sustainable for what I expect will be 10 or more years. But I am determined to make it happen by June.

Tyrone

LaneyG · February 8

I’m so sorry Texoma. I feel like I may not be that far behind you. My DH is also a sweetheart until mid late afternoon. Then I don’t know what I’m going to get. I find that if I can keep him busy and distracted enough, I can squeak through the day without major to dos. It sounds like your safety is at risk. That would definitely get me moving for placement. I get a lot of verbal threats but he hasn’t followed thru yet anyway. I have visited 3 MC so far. Im also in an abuse watch list.

JeriLynn66 · February 8

Texoma, I’m so sorry you are going through this. If your safety is at risk you may need to call 911 so that he also gets to a safe place to manage his behavior. Is your husband on medication for agitation?

M5M · February 8

https://alzconnected.org/discussion/comment/197402#Comment_197402

Laney’s, can you explain an “abuse watch list.”?

GiGi1963 · February 8

Texoma for me the worst problem is how to place my DH when he is wonderful until early afternoon. He carried on for five hours yesterday lunging at me. Verbal abuse and a couple of slaps and spitting. More than I can take! Incontinence issues are surfacing but I still feel guilt and sorrow thinking MC because of the hours he is still my husband. And, I have a hard time loving him after each episode. Guess I'm stuck.

ButterflyWings · February 8

@GiGi1963 and others here -- Sundowning is a real thing. By early to mid-afternoon (sometimes later) many PWDs including my beloved have a nasty change of personality. We needed anti-psychotic meds to help turn this around. Getting the right prescription, dosage, and schedule (morning, early afternoon, and bedtime) to take Seroquel faithfully every day, stopped the hallucinations and delusions that were causing his problem behavior. Also, do check for UTI if any sudden negative behaviors escalate suddenly.

Your DH is likely suffering as well, when his behavior is off the rails like this, so you will be helping him and you both by getting his Dr. involved immediately. Not to mention the safety issues. Someone with a diseased and dying brain as dementia causes, is not able to follow the rules or the law. You could be hurt very badly.

CStrope · February 8

Sounds like there are quite a few of us in this limbo, just trying to figure out how/when to place our LO. I am there too. Last May I had to take DH to the ER for fecal impaction. For some reason that level of constipation knocks him to another level, and it is completely unbearable. He becomes a monster that physically strikes out at me when I'm trying to clean him up, and is impossible to get to do even the littlest of tasks (change pants, stand still, etc.) After a week of dealing with that situation, he was back to his normal level of dementia. 2 weeks ago we hit the same level of chaos and constipation. It was 10 days of utter hell. I looked in the mirror one morning as I was getting dressed and was shocked at the number of bruises I had on my arms and torso. I was ready to pack him up that minute. Then the bowel situation straightened out, and now he's back to being very manageable. I know everyone says once the physical abuse starts they need to go, but it's hard for me knowing that he will return to his very manageable self.

I hate feeling that our health care system has me hostage. His pension and SS will go straight to his care, and I'll have to live off of what I make working. I'm not old enough to retire, and what I make is comparable to what the amount is for "Impoverished spouse pay"!!

ButterflyWings · February 8

@CStrope Have you tried a daily dose of Miralax? Hospice placed him on 1 capful a day, and I modified it to 1/2 capful when the standard amount was a little too much. This keeps him regular without having the texture of his #2 go to one extreme or the other, if you know what I mean. Solid, but not too hard for him.

I'm remembering now, the hospice doc actually automatically put him on a Senna laxative upon intake and that was almost like a colonoscopy prep for him, and blue glove disaster for me. Caregivers' knowledge of our PWDs is so crucial because otherwise the standard operating procedure (based on assumptions or the "average" person) can really cause havoc.

After that first unnecessary purging happened, I was able to tell them that he did not have elimination issues, had been a "clean" eater for years thus didn't have a lot of GI buildup, his diet, was not taking any meds that caused constipation, and as a small-ish person he shouldn't get the same dose as someone 2 or 3x his weight, anyway.
They agreed and we have been great partners on med decisions ever since then. His med team consults me before prescribing or changing anything and I defer to their guidance after sharing my questions and input based on his history and current situation which they always take into account. I only wish they had asked me about that med and explained what could happen before I gave it the first time - what a mess!

Phoenix1966 · February 8

Please do not hesitate to call 911 when he gets physical. You cannot know if or when the slapping/spitting could escalate. If he ends up being hospitalized because of the aggression, insist on having him get a geri psych evaluation. Do not let the hospital send him home. Repeat that there is no safe discharge plan in place and you are not capable of managing his care, that you fear for your safety. They will try to get you to take him home, but remain firm. Hospitalized, they should be able to fine tune and tweak medications so that he is calmer. You need to have this done because many facilities will refuse to initially accept him with these undesirable symptoms.

While he is hospitalized, begin touring facilities. Many have waiting lists, so the sooner you find one you are comfortable with, the sooner you can place a deposit to hold a spot for him(or get on that waiting list). Some MC facilities do have Medicaid beds, but there can be waiting lists for those and oftentimes, the MC expects you to private pay for two years or so anyway before transitioning to one of the Medicaid spots.

Please keep safe. Have a charged cell phone on you at all times as well as a room(with a window or other way to exit) that you can lock yourself away from him.

jfkoc · February 8

It is always good to have Plan B in place. That usually means a placement facility. You can start your search online and/or on your phone.

You will want to know;

Staff training....both initial and ongoing

Staff to patient ratio

Will ask for a copy of the placement contract

You will ask for a copy of the state license agreement.

Only when you are satisfied will you want to go and take a look. The bare bones of professional care far outweigh how attractive a facility looks.

It's time and I don't know where to start

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