MC facility not going well, but I just can't bring him home

CStrope

Sorry, I just need to talk to people that know what I'm going through. Bob has been in memory care since 4/1. At first I thought things were going great, but then the downward slide started. I feel betrayed by all the positive things they told me before I chose to place him and now I just feel stuck in a bad situation.

They told me they would take him for frequent walks outside the property, that hasn't happened once.

They told me they would have him on a every 2 hour bathroom check, he didn't wear diapers at home, but they've been using diapers on him since day 3

They told me they had ways of getting him to bathe or shower, he hasn't had one since he moved in.

On 5/17 I received notice that Bob would qualify for some Medicaid benefits. I was thrilled. The MCF immediately called me and said that he was not admitted as a Medicaid patient, so he would have to leave. There was full disclosure about my Medicaid application, and they even gave me contacts to help me fill it out. They were told since he was already in the facility he could not be kicked out for that. So now they are calling every little thing he does an "incident". They've changed his medications 4 times in the 2 months he's been there, and now have him on Risperidone and Clonazipam, keeping him pretty much zoned out.

Yesterday I got a call that he was outside….alone…..on the patio area and when they looked he was on the ground and he couldn't get up. They didn't know if he fell or collapsed or what. They had to carry him in as he couldn't stand. I was at the facility within 10 minutes. He was extremely warm to the touch, but not at all sweaty, and he was completely zoned out. A staff member kept taking his blood pressure, because it was pretty low. 80/55. I sat with him by myself for over an hour, then my son was able to come join us. The next time the staff member came to take his blood pressure I asked what his temperature was. He told me that they couldn't take his temperature because they hadn't been able to find their thermometer for a couple of weeks! The facility is next door to a pharmacy!!!!! I spend 3 1/2 hours with him, making sure he was ok. The nurse and facility administrator never once came and spoke with me or checked on Bob. The only people that did were 2 of the staff.

I'm so frustrated. I thought I had picked a good MC for him, and now I feel like I've betrayed him by placing him here. We are currently looking for other placement for him, but that can't come soon enough. I specifically asked before admitting him if they had experience with FTD, and the administrator told me they have another FTD patient. I realize now that was NOT a good answer, but a way of appeasing me. That other FTD patient has already been discharged due to his behavior.

Please tell me I'm not a bad spouse for doing this! I go up every evening after work, change his clothes for him, change his diaper for him, and last weekend I even went up and mopped his room for him because he had urinated in the corner of the room and it still smelled. As soon as he is moved to another facility, I hope to work with state authorities to make some major changes in this facility.

Jeanne C.

You absolute are not a bad spouse. You've been doing your best for Bob and placed him there in good faith. Absolutely find a new placement. And YES call your ombudsman. I'm so sorry that you're both dealing with this. My heart breaks for you.

GothicGremlin

Oh my gosh, I'm so sorry this is happening. You are definitely NOT a bad spouse. You've been doing your best for him for so long. Bob is very, very lucky to have you in his corner.

I'm with @Jeanne C. - call the ombudsman. File a complaint (once Bob is safely placed in a different memory care facility.) Not having a thermometer? Are they kidding me? I'm upset for you. And leaving him outside alone, on the ground for who knows how long? Definitely file a complaint when the time is right.

My experience with Peggy's memory care facility and FTD …. I always thought Peggy got good care there, I still do. I never felt like maybe she wasn't in the right place. That said, she was always in Depends. They checked her every two hours, so she rarely had accidents, but they still happened every once in awhile, especially if someone accidentally gave her something with milk in it (she was lactose intolerant). So I guess I don't fault Bob's facility for putting him in Depends (or whatever the brand name is that they use), they're probably being proactive on that front. At Peggy's facility it didn't matter what time I got there, someone was always mopping the floors and cleaning the resident's bedrooms, and they did this a few times a day. Peggy's room was always clean and there were no smells - and she definitely had a few lapses where she peed in the corners. So I know the good facilities are out there.

Also, for a period of time I was very worried Peggy was going to get kicked out of memory care. She wasn't violent or abusive, but she screamed all the time. We were constantly adjusting her meds. That went on from I'd say … mid-Aug. through the end of Nov., when I finally got hospice involved. I didn't like that she was mostly zoned out, but I also didn't want her to be terrified of whatever it was that was terrifying her, and I certainly didn't want her to get kicked out. So I had to settle for a mostly zoned Peggy. I mention this because that kind of a choice may be in front of you. Maybe find out (if you can) what the new facility's policy is with FTD patients?

CStrope

https://alzconnected.org/discussion/comment/211969#Comment_211969

thank you, the experiences you had with Peggy really help. I have pictures and all sorts of documentation that will definitely be given to the right oversight group once I can get Bob in a better place. I do think zoned out Bob is going to be the norm now. The biggest issue I have with the diapers is that they use it as a way to not have to pay attention to his toileting. I put a clean diaper on him before bed at night, and usually it is still on him, and very heavy with urine or feces when I return the next evening. I've started putting a little mark in the back of them so I know if it's one I put on him.

Jeanne C.

That's awful and cruel. I'm so sorry.

CStrope

https://alzconnected.org/discussion/comment/212260#Comment_212260

Jeanne C. do you know what meds they had Peggy on? My daughter was here for father's day, and she is adament that he is too zoned out and is on too much medication. I feel that if he isn't zoned out he's going to be aggressive and get kicked out immediately. I feel that he is much calmer, even if he does occasionally fall asleep in the chair! Wonder what your thoughts are. I feel like she just doesn't want him progressing, but instead she thinks that I'm not fighting for him, and that I'm willing to let him be drugged up.

Jeanne C.

https://alzconnected.org/discussion/comment/213195#Comment_213195

I'm not sure. I'll tag @GothicGremlin bc I'm sure she remembers. My husband is on risperidone and escitalopram. It works pretty well for him. We give lorazepam very occasionally if he'saggressive, but it's rare.

Jeanne C.

Oh, and my husband naps a lot. It's just part of the disease.

GothicGremlin

Sorry for my late response!

@CStrope Peggy was on Seroquel and Depakote (spelling?) She was kind of zoned on them, but the alternative was the screaming, and I was beyond worried that she'd get kicked out. She was never aggressive, but she screamed - a lot. Like @Jeanne C. 's husband, Peggy slept a lot once she got to later stage 6 and stage 7. I think part of that was the drugs, but part of it was just the progression. I think it's a common thing.

CStrope

https://alzconnected.org/discussion/comment/213239#Comment_213239

Ugh, I'm so sorry, I meant to tag GothicGremlin it's been a weird week!

CStrope

@Jeanne C. @GothicGremlin thank you both so much. After my daughter went home this past weekend, she called me with all the "answers". She thinks Bob is too sedated, I responded that he has to be or he will be aggressive and punch people. She said she thinks he's depressed! I said his brain isn't functioning properly I don't think normal depression is an option. She thinks I shouldn't be accepting of the fact that he doses off and is in lala land sometimes, I said part of that is due to progression! Of course she only sees him 1 weekend every 5-6 weeks. In the past 2 weeks he's also had an incident where he got dizzy on an 84 degree day and ended up on his hands an knees on the patio, an ER visit for a fall that gave him a huge goose egg bump on his forehead, and a UTI. But she doesn't agree that those things also lead to progression. I know she hates seeing her dad like this, but in the meantime, she has a way of making me feel like I'm not making appropriate decisions on his care.

Jeanne C.

https://alzconnected.org/discussion/comment/213293#Comment_213293

Has she done any reading about dementia? Maybe ask her to read the dementia experience. Also have her look at the FTD staging document from Tam Cummings. And frankly, I would have a blunt discussion about the fact that her dad is not going to get better and that the most important thing is to keep him calm and safe. Unless she's going to take over the physical and financial responsibilities, she needs to back off. Too blunt? It's how I truly feel. I get a ridiculous amount of unsolicited advice and I know that I'm doing the best I can for Ralph. And YOU are doing the best for Bob. Stay strong, my friend.

CStrope

https://alzconnected.org/discussion/comment/213314#Comment_213314

Thanks, I try, with kid gloves, to try and stress to her that she has to remember it is a terminal disease that gets worse with every day and every change…..I'm thinking she's got a bit of guilt going because for the few years before diagnosis (but when changes were evident), she was not in a good place with him.

GothicGremlin

I'm thinking she's got a bit of guilt going because for the few years before diagnosis (but when changes were evident), she was not in a good place with him.

Funny, last night I had a similar conversation with my s.o. about my brother. I think he has guilt around how he treated Peggy in the lead up to her diagnosis, and through the first year. He was so horrible to her, which really stressed her out, and hurt her feelings. I knew I had to move her out of that house ASAP (they were living together at our parent's house). And I did move her out. He and I have been on the outs because of this (and a few other things) - we're still on the outs, but I'm seeing a thaw, and I think that's because he's finally realizing what he did, and that he can never make it right. And that it's on him, not anyone else. It's a heavy burden to carry for the rest of your life.

And guilt is powerful, and with dementia, you can't go back and make it right. It's way too late for that, and your daughter is probably well aware of that.

P.S. I always knew when someone close had not read up on Alz/FTD. I knew it by the questions they asked, and the opinions that they gave me. I think most people (who aren't caregivers for a PWD) don't really realize that this is a terminal disease that will never get better. Over time I had to just smile and let it all go in one ear and out the other.

Just know that you're doing everything you can for Bob. He's in good hands.

CStrope

@gothicGremlin @Jeanne C. One day at the facility, a staff girl came in with Bob's clean clothes. She looked at me and said that she had him for a teacher. I replied, he's a lot different now isn't he. Then she asked me, what happened to him was he in an accident? I couldn't believe it!!!

Oh and 4 days after they got him off the ground on the patio, he fell and hit his head, requiring an ER visit. The next morning I insisted he be looked at by the nurse, but the ill-equipped administrator called an ambulance instead. He had a UTI. Most likely the cause of the head fall incident, and the incident where he was ont he ground on the patio.

Jeanne C.

Yes, it really sounds like a move might be needed. I'm so sorry.

CStrope

@GothicGremlin @Jeanne C. I've had 2 conversations with the county's Ombudsman, and a conversation with the social worker at the Hospice group. We are having Bob reassessed on Friday and hopefully the people that do the assessment agree with the Hospice nurse that he should be moved to a nursing facility here in town. They are known for having excellent care, but it's all a matter of whether the assessment can show that he needs a higher level of care than what he is currently approved for. Keep your fingers crossed!

Jeanne C.

I hope everything works out and you can move him to the other facility.

GothicGremlin

I'll be thinking good thoughts!

FTDCaregiver1

Hi CStrope, after repeated bad experiences w/4 MC placements, I ended up pulling DW out and now care for her at home since Aug/2023. This past year, though she continues her march on cognitive decline, physically, she rebounded very well. The low BP incident, as you describe this, sounds very familiar…perhaps dehydration might have happened there? That happened in MC with my DW.