My MIL was staying with us for a four years, she has dementia but it got too much and was destroying us after a lot of counseling and guidance my husband finally agreed to place her. We found a place last June, problem is my husband's fears came to fruition.
His mother is physically 100% functional, her issues are all cognitive. She needs prompting, queueing, ans guidance for nearly every task. She will not eat unless someone constantly reminders her to eat, she needs prompting to bath and constant coxing or she won't do it. If you don't watch her she will throw the food away.
She can engage but needs someone to hold her hand through the process. Think of her needing a para professional like some kids in school need.
My husband gave it from June to January to see if she would get adjusted. She never did she was not eating much, she lost a lot of weight and mostly just sat around watching TV and talking to tge TV.
She never did that at home, since January my husband goes over everyday and she is doing better but I don't see much of my husband. I do not understand how a memory care facility is not equipped to better handle people like my MIL.
Granted I know she can be a handful we did it for many years, but we are not trained like they are how is it we can get her to eat, shower, engage albeit with some effort but we can do it. Yet they cannot. I am afraid I ruined my marriage by not sucking it up instead of pushing him to place.
I told my husband she will get better care than we could provide issue is my husband is still providing a lot of the care. He handles her dinner which sometimes is the only meal she gets since we have been told they cannot force her to eat. Reminding her constantly should not be seen as forcing. Same with shower we been told if she says no they have to listen. She has dementia, what is best for her should overwrite that. During the period my husband did not show, they did not bathe her for a month.
Got so bad we had to come up once a week to bathe her since she would not listen to anyone else.
I feel horrible she is not the same person she was before we placed her, and I think my husbans resents me for it. He told me this could happen, I refused to listen caused I wanted our lives back. Even with her placed we don't have that.
I need some guidance and help.
We had to tell the nursing home to just bath my granny. She hated it and cried help the whole time but, it was important for her overall well being that she was bathed regularly.
The facility needs to put the care plan in writing and enforce it with the staff. Not feeding someone that requires help is actually neglect and could get them in huge trouble.
Your husband has all the authority, time to step up and advocate for mom to be taken care of.
If you look around at other facilities look for a facility that gets the residents to a dining hall for meal times.
Mom had CNA's that worked full time jobs in residential facilities. I remember them telling me that the residents loved going to the dining hall for meals.
For what is is worth from what you described I do think the issue is not your mom but her placement. Showing could be thing but her case does not appear to be the case. It does seem where she currently placed is not equiped and should be reported because all the behaviors you have mentioned are common dementia behaviors and they should be trained to handle said behaviors.
You are right she is young and does have a lot of life ahead of her, just because she has dementia does not mean she should be treated less than. Do what you and your husband can live with when she passes. Support groups are great but often times as caregivers we become jaded and numb so our words come off as harsh or uncaring but it is anything but.
I don't think people mean her lack of engagement and stuff is right but we live in the real world. That level of care is not profitable or even possible in most places. So we have to operate with what realistically can be done.
Wish you all the best.
You say your urging to have MIL placed may have damaged your marriage. I think bringing her back to your home will as well. This sort of crisis caregiving affects family relationships. I know this from dealing with my developmentally disabled SIL's issues and what this did to my marriage. We were very close to divorcing but we managed to save it.
You and your husband are very young. You don't mention children or working full time. Surely the two of you must have other obligations to fulfill besides your MIL's care. The two of you matter too.
Good luck.
Yes, it's true that loved ones can often get a person with dementia to do things that a carer can't - either because they know them so much better, or because they take the time to engage with them. AND IT MAKES THEM ILL, LEADS TO BURNOUT, AND STEALS THEIR TIME, THEIR ENERGY, THEIR LIVES.
That's just one of the reasons a care home is better at taking care of dementia patients. Because the carers don't get burnout and their job doesn't take over their lives, or ruin their other relationships.
A care home sometimes gives a dementia patient a new lease of life, due to company and activities, but not always. It depends on how much a patient is willing to participate and how cooperative they are. They can't be forced.
A care home doesn't provide one to one care to ensure that a patient does everything you want them to. Not unless you've got bucket loads of money to pay for that.
However, you have no way of knowing how your m-i-l would be if she had stayed with you. Your husband might be visiting every day, but that's after having had a proper night's sleep - if he were giving 24 hour care he might not be able to look after his mum so well.
The problem, I'm afraid is with your husband's and your expectations. The problem is you cannot accept the natural process of aging, especially aging with dementia.
You can't keep someone going when they don't have the will to do anything for themselves, not even the basics to keep themselves alive. Getting your m-i-l to eat, or shower, or pay attention to something other than the TV is not her living for herself. It's your husband (and you) propping her up, like a puppet, only able to do anything while you pull her strings.
That's not living.
I know how harsh this sounds, but it's not necessarily the kindest thing to force someone into activities that no longer bring them joy once they have lost the will to live. It's time to accept this situation and not expect your m-i-l to do things or want to do things that she did when she was healthy, before her brain was broken.
However much it might appear that your m-i-l does well when her son visits, that's at the expenditure of your husband's time, energy and emotional health. It's also your marriage that's paying the price.
Your m-i-l has had her life. She's just going through the paces now, but she's not doing anything voluntarily.
You were right to persuade your husband to place your m-i-l. Unfortunately, your husband can't let go. He can't see the reality of his mum's condition. That's not your fault.
In her last months, she was taken to a sing-along group for dementia sufferers. She really enjoyed that, but as soon as it was over, the switch was flipped and Mum's light went out.
I felt if I could have been with her every day, I could have kept her more engaged and "with it" a bit longer. But I'm pragmatic and knew that would have been at the expense of my health and my life.
I loved my mum, yet I accepted that she'd had her life (although, cruelly, cut short) and I couldn't live her life for her, I had to live my own.
I learned to stop feeling guilty when I wasn't visiting my mum. I couldn't change her diagnosis, and I couldn't halt the progress of the disease. However bad I felt, I had to continue with my life and I couldn't do that by being with my mum every day.
Curious because I do believe that other cultures have more respect and regard for the aged and dying.
The DON of a Medicaid facility is going to listen to one thing and that’s going to the state ombudsman. This whole charade might in fact end if you ask the don for that number, which all snfs are required to give anyone.
Is hubs her poa?
I will look into getting that number and speaking with them. Yeah he is her guardian.
I agree with others that MIL is in decline and you can't fix that no matter how many 1:1 caregivers there are. It's common for those with dementia to perk up as she did for a birthday outing, then go back to a baseline of non-engagement. For her to engage with your husband is nice, but that isn't gong to last forever no matter how many dog-and-pony shows he puts on.
I also have my doubts that it's even reasonable to expect MIL to be active and doing things all the time. She has dementia. Her brain is broken, and maybe it just wants to relax so she can stare into space. There's no evidence that being quiet and "out of it" is bad for dementia patients. My husband is a dementia patient and lives in a facility. He can be very animated and talkative, though we can't understand what he says, and he enjoys laughing and interacting. Or sometimes he just stares, as do about half the residents there. We don't know what they are thinking or seeing, but sometimes they talk with whatever it is. We let them be. Their world isn't our world, and for them, their world is comfortable.
So be it.
I am just confused why places that claim to be able to handle the condition are at the very least not able to get them to eat and bathe? It is not like the physically even have to bathe her she can do it on her own she just needs someone to kind of push her to do it since for whatever reason she dislikes water.
We even told them how we use to handle it. We would tell her time for a shower she would bemoan and whine but she would do it. Just need to watch her to make sure she washes properly and does not fall.
Same with eating she just needs someone to pay attention to her or she gets distracted or forgets so needs to be redirected to eat.
Idk those seem like general dementia behaviors why are they having such a hard time dealing with them. Doesn't that seem weird for a memory care unit?
Even when it comes to activities my husband gets a whole bunch of people to engage and interact together. He has a music time, story time and a lot of the residents get involved. Ones that are still verbal tell stories or they just dance around and they seem very happy. I understand they are overworked, understaffed, and probably underpaid but it seems odd how one person can do that with just a keyboard and a guitar. Maybe it is the type of activities they try to engage in idk.
Maybe he just has more patience and he would he fine if I was not in the picture. I will never let her move back into our home I would divorce him if he did that. I do defend him because if he wanted to he could have easily kept her home ignored my concerns and never placed her. That would have been the easier path. He could have put the burden on me to leave.
Your husband will never Do Enough for his mother, in his eyes, because he holds the title of Her Hero and Savior. It's a burden no person should ever be saddled with, honestly. He'll do too much and STILL feel guilty it wasn't enough. It's the nature of the beast, and it's a beast alright.
This has nothing to do with "Boomers", what a ludicrous generation to blame (as usual), but with the Only Child syndrome. It's not your fault, it's your husband being stuck in the FOG of his mother's teachings, most likely, either verbally or by insinuation.
I'm sorry you're going thru second hand FOG YOURSELF now. I'm not sure your MIL is going to get a ton of 1:1 attention from ANY Medicaid SNF, to be honest. Nobody can force an elder to eat or to shower, but the staff should have tricks up their sleeve to coax a resident into compliance. I wish you good luck and Godspeed with how this all turns out. But stop blaming yourself for the SNFs shortcomings, please.
I am not sure if it done out of FOG or more so my husband like most people don't want to see they love dirty or eat like they never had a meal before. All any of us want is for her to be taken care of not just watched if that makes sense.
Also, the facility can’t force her to engage with people and activities.
You both have very unrealistic expectations. Facilities cannot provide 1:1 caregiving. You can, however, pay someone and provide it for her.
Your husband is going to visit entirely too much and you are actively causing a catch 22 where she isn’t going to listen to the workers because she is waiting for your husband.
We did give it time, don't think it is entitled to expect them do basic things like hygiene, making sure they eat and stay active. What exactly is the point of placement if they cannot do that stuff?
He resents you for having her placed? You already tried putting up with it for 4 years or did he forget about that? And does he think this is fair to you to have to be a caregiver for the next 20 years? I am sure he feels bad for the position he is in, but he is wrong to make you suffer so his conscious is eased. Put this on him to come up with alternatives.
I am going to help find places cause he already has a lot on his plate. We don't have much in terms of disposal income and we looked on sites like care.com the minimum people want in our area is $25 an hour and all of the have a minimum of 4 hour requirement.
Which makes sense has to be profitable for them individually. On Monday going to call around and find some new options.
Getting full on Medicaid MEMORY CARE on the taxpayer is a gift. If she won’t take it, then away to snf she goes.
Taking her from familiar surroundings to unfamiliar will cause some decline. But there are laws and even with Dementia people have rights. And one is, you can't force them to do anything. I found with my Mom the aides would ask "Miss Peggy do you want to take a shower" Of course she would say No. They are just like small children. I told them to stop asking, just tell her. "Miss Peggy time for your shower". I never had trouble with my Mom when she lived with me, but I did not ask I just said "time for a shower".
There should be activities. Are the aides asking her if she wants to go and she is saying no or are they taking her and she is not participating.
As said, in your home 2 people were giving her attention. That will never happen in a facility. Seems you need to make changes if your marriage is going to stay intact. You have lost your husband because he feels he needs to be there for his Mom. You bring her back to your house and still you have lost time with him because Mom needs attn. There has to be some "us" time. Daycare was great for us but we were both retired. So as soon as the bus picked Mom up, I showered and out the door we went. You need an aide to babysit Mom so you can have time together. I was able to find one that would bath Mom. If you bring her home, u can place her in an AL for a week why you go away somewhere.
Nothing is going to be perfect.
When she was living with us she did have daycare but it just was not enough of a break. Which is why I pushed for placement. I would possibly agree to take hee out of placement if Medicaid paid for majority of her care.
His mother has become now so much a victim of her dementia that she is no longer who she was, nor who he remembers her as or imagines she could be again. This is a kind of living death, made the worse because the shell of who we were is still living, visible and suffering.
You can feel as guilty as you wish, but you didn't cause this and you don't have the cure of it, and throwing your entire family and life upon this burning funeral pyre will not make MIL happy, you happy, nor your husband happy. In fact there is NO HAPPY in any of this. Not ever. Not until she has passed and is relieved of this torment and you relieved of standing witness to it.
Until your husband can find some acceptance that this is horrific but it cannot be changed appreciably, he is going to be angry, hurt, frustrated and looking for someONE or someTHING to blame. He needs help. Either together or separately he should be in counseling with someone who works with those dealing with life transitions.
I am so sorry and my heart goes out to him.
He sounds extremely anxious.
At least here many doctors have expressed the same concerns for the use of antidepressants and other medications especially when non chemical means are effective also think it has something to do with her age. It seems her doctors are more hesitant to use drugs as the first line.
Every facility we toured did have the same philosophy around medication. Idk why many places told us medication usage is not as wide spread as it was in the past.
I am going to start looking for other places though come Monday as per suggested.
Your husband should have NEVER allowed his mother to move in with you at such a young age to begin with. If it's anyone's fault it would be his for putting his mother before his wife.
The fact that your MIL is so young leads me to believe that she must have early onset Alzheimer's which can go on for 20+ years. Your marriage won't survive that if your husband continues to put his mother before you.
There are no easy answers here, but you and your husband are still very young, and deserve to have a good marriage, without the responsibility of daily care for his mother.
I hope and pray that your marriage can survive, but as long as his mother comes first, I honestly don't see how it can.
A facility, any facility does not have the staff to do that. Even if you used the same ratio they may use in a Day Care Center where it is 1 staff to 4 infants or toddlers at some point the caregiver would be off tending to to others and your MIL would be left to "entertain or engage" herself.
Even if she were in Assisted Living where a staff person would come in and remind someone to take a shower, get dressed or eat their snack they would not stay there and help her do so.
Are there any smaller "Board and Care" homes in your area? That might be an option as there would be fewer residents.
Is there a remote possibility that MIL could return to your home and utilize an Adult Day Program AND have a caregiver help out when she is not in or at the Day Program? (and would your marriage survive that?)
I know this could be a bit dicey as she WILL decline and she WILL need 24/7 care. Would you at that point return her to the facility...and if she is on Medicaid it can be difficult to find a facility with an open Medicaid bed.
Realisticly speaking it would not be safe for her to be alone, and I am not going back to sharing our space again. So yeah doubt our marriage will survive her coming back. I know my husband wants to bring her back.
I will look into board and care homes. Thank you.
She is young, she just turned 67. It was just too much for me to deal with we are also young. Caring for her at home was not inherently hard per-se I just could not deal. My husband did help in a large capacity but he also works a very demanding job.
Thanks for the suggestion I will look for other options though and present them to him. Do feel horrible told him things would be fine, and after she is placed he could go back to being more of a son. Seems like I was mistaken.
Your MIL would have declined whether still in your home or in her memory care unit, as that's what this horrific disease of dementia is all about. And sadly she will just continue to decline.
So quit beating yourself up, and talk to your husband about hiring someone(with his moms money) to take over what he feels is his responsibility(which in reality is not).
And then start working on your marriage so you can hopefully get it back on track.
Issue he has is she was fine when we took her out for her birthday in May. Guess I am having a hardtime explain to him that even though they are trained to deal with this in his eyes they are not doing enough because he can get her to eat, bathe, and engage with himself and others.
Guess I am worried he is going to resent me since everything I told him about placement kind of wrong. He had his concerns but I assured him that she will get better care than we could ever give her, yet he is still providing a lot of the care.
So in his eyes it is not some impossible task like they make it seem.
My step-mother was in MC FTD, she loved to draw and color, as she advanced, she did it less and less, then one day she just stopped.
A facility does not force anyone to shower. We hired someone to come in once a week to help her to shower, it was a fight, some weeks she did some she did not.
You can hire a helper to come in and make sure she is bathed and eating a couple of hours everyday.
Don't impose what you think as a younger healthy person on a older person with dementia, they are not as active and the decline will continue.
If they engage with her on a one to one level she will be more likely to engage. Unfortunately, we cannot afford to pay for additional help, and isn't basic hygiene part of a proper plan of care?
I feel awful cause I convinced my husbans she would get better more professional care and would generally be happier with all the activities. My husband's concerns where that she cannot just be expected to engage without someone to guide her and keep her on task.
I told them they are trained for this, they deal with it all the time. Feels like I lied. When we took her out for her Birthday back in May she was her old self. She can engage she just needs someone to help her engage and stay engage she has ADHD brain gets distracted very quickly.