Nursing home woes (parent, father, money, Medicaid)

[jenny1951]

My mom, aged 87, has Alzheimer's, leukemia, MS and angina. The Alzheimer's is what got her into a nursing home last February. I am so not happy with the care she is receiving but I can't take care of her alone in my home. The nursing home lumps all dementia patients in one ward, regardless of their functionality level. My mom can hold a conversation, feed herself, and is a not a confrontational kind of person. Today there was an "incident" where some man came into her room, and when she asked him to leave, he began hitting her. She is pretty bruised up and the police had to come when the ambulance escorted the man to I don't know where.
I don't know if he will be back. I am scared to death he will be back. Is this typical of nursing homes that have one dementia ward? How are they supposed to protect patients like my mom from the more aggressive patients? I think it is fundamentally wrong that she is put in this ward, but I was lucky to find any place at all for her. Since she moved there, she has been moved to three different rooms and has fallen three times, and one fall resulted in a fractured hip. I feel like I have done the worst thing in the world for her as all she asks is when she can get out of there. She is on a waiting list for another home but who knows if it is any better. She has been on the list 7 months. I get the impression that once they are placed in a home, that is where they stay. Anyone else have a loved one in dementia care? How do you handle it?

[latetotheparty]

the most important thing i found was the ratio of floor staff to patients....

my mom moved here very suddenly and with a number of physical issues and as it turned out, multi-infarct dementia.....

the first home i was able to get her into was AWFUL.... i could not wait to get her out and spent nearly 2 weeks visiting and interviewing other homes before i found one I was happy with and that had a bed for her.... it probably helped that at THAT time, she was still private pay.....

[jenny1951]

Originally Posted by latetotheparty

the most important thing i found was the ratio of floor staff to patients....

my mom moved here very suddenly and with a number of physical issues and as it turned out, multi-infarct dementia.....

the first home i was able to get her into was AWFUL.... i could not wait to get her out and spent nearly 2 weeks visiting and interviewing other homes before i found one I was happy with and that had a bed for her.... it probably helped that at THAT time, she was still private pay.....

The homes that accept Medicaid are very different from private pay, and I think that is the problem I am having getting her somewhere else. She had to have a hospital stay (she fell and couldn't get up) before a bed in any home became available (the doctor wouldn't send her back to independent living) and I thought "at last, a solution"...wrong! But now I doubt a bed will become available anywhere else as there seems to be a huge shortage. I feel powerless to help.

[Trivettes]

Jenny, I went through a very similar situation when my mom was in a horrid nursing home. I was told at every facility I went to that there was a one to two year waiting period and they'd put my mom on a "waiting list.". One facility did tell me to keep checking back--if you don't check back every month or so they think you're not interested. Another facility told me that they'd have a bed if she were coming from a hospital but not another nursing home. Apparently facilities must reserve beds for those coming from a hospital...but I also had problems when she was in a hospital so who knows. . My mom was on Medicaid too.

I finally got her home without losing her long term Medicaid by getting her in a state program aimed at getting residents out of nursing homes and either to Assisted Living Facilities or home with help. Have you checked into Assisted Living Facilities? Some have skilled nursing if she needs medical help, some don't, but ALF's are more likely to have rooms available. My advice is to start calling ALF's and they can tell you more about what they accept, their staff, etc. Also call your state Dept of Elder Affairs.

With regard to the facility your mom is currently in, you can call your State Ombudsman's office. They're a huge help with complaints and can help point you in the right direction to file a complaint with the State.

Oh, I was also told it's the law that if I wanted to move mom to a different facility, the current nursing home's social services dept was required to help me search for another place. Well...once I got my Ombudsman's office involved, the nursing home did help but only by sending me a list of facilities in my area. Yeah, some help. Lol. But the Ombudsman did refer me to the Dept of Elder Affairs, who got my mom home (or she had the option of an ALF) within one month.

I think falling three times and ending up with a broken hip is absolutely horrible and there's no excuse for this. Not to mention being attacked by another resident! Jmo, but that's neglect and the facility should be reported to the State, which will investigate.

Take care and good luck.

Triv

[jenny1951]

Thanks Trivettes. It does seem like the nursing homes don't want to take residents from other homes, but they managed to find a bed when she was in the hospital. I do check back every month with the director of what I hope is the better home. There aren't many ALF's in this area, and the few I visited were horrendous....filthy, dirty, horrible places. A couple of them had stairs and mom can't manage that! All were filled, and only one could take a dementia patient. They can't all be like that so I guess I would need to search further afield. I like the idea of being within a 30 minute drive but maybe that is no longer possible. I live in a very rural area.

My mom's last roommate broke her hip just last week. I read where that is common in homes. My mom refuses to ask for help when she goes to the toilet, and that is how she fell. She says it often takes them too long to respond. She is somewhat incontinent so I have to supply the Depends which no one makes her use, so her clothes are always soaked in urine. Oh yes, I have to do her laundry, because all her clothes, though well-labeled, vanished the first few weeks she was there when they did the laundry.

The staff, on the other hand, seem so very nice and compassionate to the patients. I have no complaints there. It's funny, the state Medicaid auditors were at the home this week doing the annual inspection. I wish they had been there yesterday when this happened.

I thought all her difficulties would be resolved when I got her into a home, but in some ways it is worse. I just want her safe and well-cared for. I wanted to bring her to my house, but I would need to widen doorways, etc so she could get to the bathroom, and I don't have the money to renovate. And of course she is heading in the direction where she too won't be able to walk at all or communicate, like the majority of patients in her ward, and everyone tells me I am not capable of taking care of her alone. But the guilt has become enormous. Thanks for your advice....

[Trivettes]

Jenny....you have to supply her Depends? Medicaid pays for those! They did for my mom, anyway.

My mom's clothes kept vanishing too. By law, if it's inventoried and they lose it, they must reimburse for the lost items. Call your Ombudsman's office, they can hopefully help with this and with the Depends.

I was so fortunate to be able to bring my mom home. I didn't have to widen the doorways, but our State program (Florida CARES program) would have helped with that if we needed it. That's what they told me, anyway. I bought mom a bedside potty chair and she did use that during the night (I put small size trash bags inside, made it much easier to dump and clean). During the day, mom was able to use her walker to get to the bathroom and then her cane to walk the couple steps to the toilet. I had also gotten her a toilet riser because mom had had both knees replaced and her right hip, so the elevated seat helped. This program sent in aides to help at home--housework, bathing, personal care, shopping, etc. I didn't need the housework or shopping but I could not bathe mom at all even with the shower chair. She wouldn't let me! lol But she'd allow the aide to do it. Go figure. lol

Falls do happen in nursing homes but if staff is on the ball they won't let it happen if they can help it. They can be fined if there are too many or repeat falls. My mom fell a couple times (once with head injuries) and I saw state public records reports for the home which cited them for falls.

My thoughts and prayers are with you. My mom wanted to come home so badly--she kept saying to me, "Please don't let me die here." That really plays on the guilt! I was fortunate that mom did get to come home before she passed, but my point is that the guilt is horrendous while they're in the facility and you can't bring them home. I would never have known about the Florida CARES program if it were not for the Ombudsman and Elder Services.

Also, you might want to call your local Council on Aging. They can also be of tremendous help, both with advice and aide.

I understand about the ALF's too...it's very hard to find a good facility, especially with skilled nursing (which my mom needed). Some really are horrible. I'm so sorry you don't have a good one near you. It's important, I think, to find facilities nearby so we can keep an eye on the conditions and our loved ones.

Bless you. I'll keep you in my thoughts and hope things improve for your mom. After my experience with my mom with a couple of nursing homes I decided to train to become an Ombudsman myself. I haven't yet only because Mom just passed in May and I am still getting myself together. I miss her so, but if there's one thing I vow it's to help others in nursing homes and ALF's.

Take care,

Triv

[superk]

Sigh.

Yeah, all of this is one of those "damned if you do, damned if you don't" situations. We've experienced everything you've described at least once. I'm more of the "let them live their lives as they want to" mindset. So, I'd rather have them fall than be restrained or sedated. I'd rather let them choke eating something they enjoy than to have to eat bland pureed food. I know there was no alternative, but I feel so guilty somedays that I have to go out somewhere and numb myself with alcohol to lessen the guilt. My MIL turned into a full-fledged alcoholic when she had to go through the exact same process as me when her husband and other daughter had to be placed into homes (in case you're counting that's three members of the same family, plus his father, who've had the same disease).

[old_cold]

jenny, is one part of the problem trying to find another place that is close to you?
I am familiar with a couple of places downstate that have pretty good reputations.
They don't seem to have extremely long waiting times although it is probably a factor that your mom might not be considered priority since she is placed

[eyewrist]

Originally Posted by jenny1951

My mom, aged 87, has Alzheimer's, leukemia, MS and angina. The Alzheimer's is what got her into a nursing home last February. I am so not happy with the care she is receiving but I can't take care of her alone in my home. The nursing home lumps all dementia patients in one ward, regardless of their functionality level. My mom can hold a conversation, feed herself, and is a not a confrontational kind of person. Today there was an "incident" where some man came into her room, and when she asked him to leave, he began hitting her. She is pretty bruised up and the police had to come when the ambulance escorted the man to I don't know where.
I don't know if he will be back. I am scared to death he will be back. Is this typical of nursing homes that have one dementia ward? How are they supposed to protect patients like my mom from the more aggressive patients? I think it is fundamentally wrong that she is put in this ward, but I was lucky to find any place at all for her. Since she moved there, she has been moved to three different rooms and has fallen three times, and one fall resulted in a fractured hip. I feel like I have done the worst thing in the world for her as all she asks is when she can get out of there. She is on a waiting list for another home but who knows if it is any better. She has been on the list 7 months. I get the impression that once they are placed in a home, that is where they stay. Anyone else have a loved one in dementia care? How do you handle it?

Sorry to hear about this situation. The cops were used as a form of documentation to possibly "remove" him from the facility for" endangering himself or somone else", which was your mother.
Alz and Dementia are two hard diseases to deal with. It is actually like brain damage that is getting progressively worse if you really think about it. They have to be locked down or they would wander off and emotionally unpredictable like that man that hit your mom. And being dressed like everyone else, they could easily slip out a door and end up lost out in the streets somewhere. Most facility would have to have 1;1 or 2:1 supervision if they did it the way WE would want it and THAT would cost $$$ plus the personal caregiver would burn out very quckly and quit anyway. I hate to say it but Alz and Dementia patients do best in nursing home that specialize in these diseases...like what they call Memory Care facilities. The regular nursing home are not equipped to care for them and other who are in the same facility unless they have them in a locked ward or wing for their safety. Hope this helps.

[jenny1951]

Originally Posted by Trivettes

Jenny....you have to supply her Depends? Medicaid pays for those! They did for my mom, anyway.

Yes, because the only thing they have available are these one-size-fits-all diapers that mom refuses to wear...not that I blame her!

Originally Posted by Trivettes

...it's very hard to find a good facility, especially with skilled nursing (which my mom needed). Some really are horrible. I'm so sorry you don't have a good one near you.

The biggest problem I have is that my mom lives in NH and I live in Vermont. Her Medicaid wouldn't cover anything unless we tried switching state aid, but mom would first have to be a resident of Vermont.

Originally Posted by Trivettes

Mom just passed in May and I am still getting myself together. I miss her so, but if there's one thing I vow it's to help others in nursing homes and ALF's.

I am very sorry to hear that but you were so lucky to bring her home in the end. You are so right about the guilt.

Originally Posted by superk

I know there was no alternative, but I feel so guilty somedays that I have to go out somewhere and numb myself with alcohol to lessen the guilt. My MIL turned into a full-fledged alcoholic when she had to go through the exact same process as me when her husband and other daughter had to be placed into homes (in case you're counting that's three members of the same family, plus his father, who've had the same disease).

I find myself drinking substantially more than I ever did before for sure, most especially any day that I visit. My dad was convinced he was getting dementia, and took his life in 2003. If his fears were based on fact, then now I fully understand what he must have been going through and what he managed to avoid by his actions.

Originally Posted by old_cold

jenny, is one part of the problem trying to find another place that is close to you?
I am familiar with a couple of places downstate that have pretty good reputations.
They don't seem to have extremely long waiting times although it is probably a factor that your mom might not be considered priority since she is placed

Yes, that is exactly the problem. It seems that once in a home, you are no longer any kind of priority at all, especially since Medicaid pays for most of it. The answer might be to simply place her on as many waiting lists as there are nursing homes in NH

Originally Posted by eyewrist

The regular nursing home are not equipped to care for them and other who are in the same facility unless they have them in a locked ward or wing for their safety. Hope this helps.

Yes, that is where my mom is, in a locked ward where the windows don't even open. In spite of being a very high-functioning dementia patient, they based her placement on the Alzherimer's diagnosis alone. She can't really walk anymore since she fractured her hip (the MS made one leg totally numb) so I wish they would at least move her to the long-term care on the other side of the building. I may ask about that next week. The one place where she is on a waiting list did say that they base the ward upon the diagnosis at the time of admission, so it really may not be any better there if she is thrown in with all the dementia patients.

I went to check on her this morning and the bruise isn't too bad. It is always difficult to piece together the where, what, how and when from her conversations. She gets very confused, but she did say that she tried pushing the man out of the her room when he started hitting her. Then she said she may have "hit him first". You have to know my mom, a very sweet petite 90 pounds soaking wet woman, but I know that the disease can cause changes in behavior. This may be a sign that some subtle change is happening in her brain.

The man is back today. I don't know where they took him, (if anywhere) but he's back and roaming the halls with the rest of them. I told her to ring for the nurse if he ever comes in her room again. But she forgets that she has a bell to ring.

Thanks to all for your replies. It is helpful to vent...and a bit too early for the first Heinken