So I will try to keep this brief but apologies since I am in panic mode. I placed my mom around a year and half ago, became an issue with my wife. So around 8 months ago they said my mom needed hospice since she stopped eating and lost a lot of weight. I explained my mom just needs someone to engage with her while she eats. They claimed that is what they were doing. She ate fine with me but I said fine let's do hospice.
Now they still gave her meals but since she had someone with her she eat and gained weight, and "regained" her appetite so they removed her from hospice. Once they removed the person that was with her she stopped eating again. She once again lost weight, same thing but now that she gained weight again I am being told they cannot meet her needs.
This is a SNF memory care. Idk what to do at this point, my wife will not let me bring her home for the Holidays now since she is afraid if I do that we will be stuck with her.
My theory it is a communication issue, about two years ago she started to blend all the languages she knew into one. I was able to still communicate with her while not as fluent as she was I did know the same languages since she taught me.
Cannot speak them very well but she can understand standalone languages. Just for whatever reason cannot speak them. She also does not advocate or present signs of being hungry with others. She does not want to burden them, I explain they are here to help her but dementia she forgets in moments. Which is one of the factors that lead to hospice she became very lethargic but that happens when you do eat much.
So now I am stuck, they started the paperwork to remove her and as her legal guardian I am been informed it is my duty to find her suitable placement. My attorney did explain that even though they facility did agree to take my mom a facility can cite changes as a grounds for removal. Also, as her guardian they technically don't have to help me find suitable replacement options since part of the order does make me responsible for that.
So I am screwed? My told me she would leave me and take the kids if I take my mom in. Though the hospital told me without a proper medical emergency or reason as her guardian I cannot claim unsafe discharge. My attorney also confirmed this. I did start the process to be removed but that will take time, which is something I do not have.
My mother is 67 she had early onset. Reason for guardianship was she did not have the proper documentation setup. She does have Medicaid and it was a pain to find her current placement. Once I found a place I did not think I would need to find another so stopped looking once she was placed. Been told the fact she is being removed will also make it hard to place her, especially with this feeding issue. She is a liability at that point since now it is documented any facility will have to agree to provide her with a one to one for meal times since she is capable of feeding herself but dementia issues. IDK that is what I have been told.
Is it possible that M has been playing games for a very long time?
I never said she dos not engage with said languages after she had me. All that being said even if she is playing some long dementia riddled con, if she is willing to call my bluff and get to the point where she willfully stops eating to get down to sub 80 pounds at that point what alternative do I have? Let her starve herself health then explain to the courts why my mother was skin and bones and try to explain why neither I or the facility did ignore protocol that has proven to work to get her to eat?
Maybe you and my wife are 100% correct and my mom is playing me for a fool to get more time with me. Issue is if she is willing to take it this far I kind of have to play by her rules no?
I would rather be a bad son than a bad spouse or parent.
If you go over to Reddit and read Aging Parents, you will see many cases where one partner brought in a parent, against the wishes of the other, and are now divorced.
If you are left with the full responsibility of your Mom, rent her the absolute cheapest apartment nearby. Arrange meals on wheels and visit her daily. Eventually, she will fall and the ER will decide "she isn't safe." Then they will find a placement for her.
Please do not wreck your marriage. You will live with the damage from that much longer.
We unfortunately are probably going to divorce since I have to go back to handling dinners until I can another solution. She was pissed. My wife legit is of the mindset if she lacks the brain capacity to eat she should then just die.
My wife hates what dementia has done to our family. Guardianship is not exactly a walk in the part it ia a fulltime job in itself.
If my parents, who were in their 90s with dementia, had lived with my husband and me, it would have destroyed our marriage, because I showed more devotion to my parents than I did to him at the time.
I assumed that my husband would understand. We never discussed it. I was clearly focused on my parents' care, and I had to travel to care for them, we didn't even live in the same state.
My mistake was not discussing it with my husband.
What helped is that I expressed my thoughts to my husband, and explained how difficult managing everything was for me.
Perhaps you could say something like, "This is very important to me, but you and the children are very important to me also. I want to find a way to make this work between us. I am committed to my relationship with you. I am caught and don't know what to do."
I learned that instead of saying, "I have to do this [care for my parents]" and assuming my husband would understand, I changed the words I used, to let him know that I am struggling with what to do and how best to help them, without it affecting our marriage. My changing my vocabulary helped.
I hope you can find a way that works for everyone.
You can't please all of the people all of the time. You're in a bind, and this is how you fix it. Dementia changes constantly. Hopefully this is a phase mother is going thru and a temporary one at that. Encourage her to get to know the other ladies and gents in the dining room so perhaps she'll enjoy someone else's company other than yours one day, language aside. Dementia creates it's OWN language.
Good luck.
Maybe the court can give you some guidance as to what, exactly, is your responsibility and what is the responsibility of the facility. Because this sort of murky "well, if she refuses to eat you ***might*** be liable" seems somewhat random.
If they do succeed in removing mom, I would then make a complaint to Medicaid (if they're who is paying for mom) and tell them what this facility is up to. A facility that is being paid to care for someone should NOT be threatening to toss out someone over something this trivial - it's not like mom is violent with staff or other residents - unless the family provides more (or pays for) additional care.
Again, you're not talking about someone who is violent, or who tried to wander off or into other residents' rooms, where one on one care is the only solution, this is as simple as someone sitting with mom for a little while during meals. The fact that the facility is that short-staffed is NOT your problem to solve, it's theirs. If this facility can't solve a problem this basic, how are they handling the patients who are much worse behaved?
As for how they deal with more difficult people, idk and they 100% would not disclose that to me either. They will say everything is done on a case by case baises. I will reach out to the department of mental and hygiene services though and will do as you suggest to report them though cause this is crazy.
After reading all your answers to our suggestions, and after your providing further information in these answers I must tell you that I agree with your wife absolutely.
LEAVE HER BE.
I think that your mother, at 67 and diagnosed with early onset of Alzheimer's now faces a life of ongoing absolute misery. FORCING FOOD to make her endure this life longer, is to my mind a very poor decision. BUT you are her guardian, and you are the one responsible for this decision.
I think it is your unreasonable demands to the SNF that has led them to say that they cannot provide the care that YOU EXPECT of them. So in that case they are absolutely correct. You are guardian. If you need more care than they are reasonably giving, then you will need to find that care. You and I both know that you will not be able to do so.
I think the main issue here is that you are having a terrible time accepting the diagnosis and prognosis here. It is early Alzheimer's. Your mom will go on as long now as she must. At 80 pounds that may not be a lot longer. And to be honest, Hospice and a comfortable death would now be my personal goal were this my loved one. I have a DAUGHTER 63. I would not want her to live longer, given what life in this condition will be.
The answer here is not more food.
This is where the problem comes up, my mom is doing it again so both myself and the facility are in a bind. We know exactly what can be done to get her to eat and it is the end of the year so I am getting ready to submit my annual report. I legally have to disclose my mother was on hospice due to not eating and losing a great deal of weight. I will have to mention the facility removed her as she regained weight and became more engaged again.
So if she is going through the same thing again first thing they are going to ask is why did we removal a protocol that worked when it came to eating. That is the core issue here.
The 80 bounds was the first time around, she was removed after she got back to 117. The issue is now she is showing the same signs of doing what she was before. Not eating, being withdrawn etcetera.
The facility does not want to do hospice cause she is not at the dangerous weigh yet but they also dont want to deal with her because they will also be questioned why they did not adhere to a protocol that worked for my mom. She lost about 10 pounds so far, the writing is on the wall so they are trying to kick her out before they are forced into an undesirable situation. She is around 107 now.
I am going to go to eating with her, until I can find another solution. My wife is not pleased. This is the same part my wife does not understand, I legally cannot just let her starve especially if I know a means that she will eat without forcing her to eat. Same with the facility they can also get in trouble if she goes through around stint with her on hospice for something that could have been avoided. Thus why they want her gone before she gets to that point.
Not like we are putting a feeding tube or stuff, all that was done was ahe had a one to one and she ate. Neither of us would be able to easily explain why she is losing weight when a simple solution exists. THus why I am going back to eating with her despite my wife being upset cause I have no other option at this time. I need to buy myself more time to find a better solution.
Even spoke with my attorney last night, letting someone with dementia starve themselves to death a murky area especially if they have been deemed to lack capacity. They don't have the judgement to make reasonable choices anymore and yes the facility and myself can be held liable if it was found out we knew what was going on and ignored it because she is suffering. We legally cannot determine suffering and with guardianship it gets murky cause everything is documented. We have no plausible deniability.
It is SO weird to me that this facility is unwilling to do what it takes to care for their patient. Would they help her to drink a shake? Does she drink water on her own? Isopure makes an unflavored protein powder that can be mixed with water, but it should be consumed within a few hours of mixing. An insulated tumbler with ice could extend that time by another couple of hours maybe.
Honestly, you need to start making phone calls to other facilities to get her on waiting lists at multiple places. Even if you can get her into another SNF that isn't a great choice, it will give you time for better options to open up.
Since we don't have to force her to eat just provide a warm body it would not look good if she passed and it was documented none of us tried to give her a companion.
The language aspect is complicated because she speaks an amalgamation of every language she knows. She does respond to standalone languages but she replies in her jumbled up language.
I get by cause I know bits of every language she spoke so I can piece it together. They have spanish speaking staff and they can get like 10% it is weird. Her brains wires got super crossed.
My wife wants me to leave her be, issue is leaving it be got my mom to the point the facility recommended hospice and I agreed cause they said it was progession but she started to eat again. So do I just let this eb and flow?
While I feel for your wife and agree with/admire your decision to put your wife's needs first and place mom, I think now your wife needs to cut you some slack and meet you part way. Her impatience with your visiting mom during meals to keep mom happy and IN THE FACILITY is short-sighted, in my opinion. I can understand her wanting you for family meals, but if this is the solution to keep mom in her facility - until such a time you can find a different solution, be that placement somewhere else or finding someone to "spot" you and sit with mom at meal times - then she needs to suck it up a little bit.
After all, it's in your wife's interests to keep your mom in her facility, especially if the alternative is your mom has to move back in with you guys.
"Please tell me in what way you, a Skilled Nursing Facility, are unable to meet my mother's needs. She has a need to be kept clean, to be fed or attempted to feed, to be cleansed when incontinent, to prevent bedsores, to give what time and attention can be spared, and to be medicated/ I need you to tell me in writing what needs of my mother you are unable to meet".
I am beginning to think it is perhaps the family's needs that cannot be met? Because there are truly few needs your mother has now other than comfort, kindness, what protection of skin and dignity can be accomplished, to be fed and medicated and changed.
This is what they are trained to do, so what they said to you, on the face of it is UTTER NONSENSE. OR they should lose their license to give care.
You need a little extra help that doesn't interfere or disrupt your life with your wife.
It It doesn't appear that your mom needs hospice... She needs someone to encourage her to eat and socialize and take showers etc. look to care.com or private agencies in your area. My best to you.
I pray I can find a volunteer group or something that will come handle dinner. I can still handle lunch and while not perfect she was maintaining weight with two meals. Might even go early to have breakfast with her, just have to see if they are okay with me going in at 6am. I know she would he fine, just not sure about the facility.
She knows a tad of other languages but those were the ones she was absolutely fluent in.
As suggested I am going to look into church's and volunteer groups that would be willing to help. In the meantime I will go back to doing lunch and dinner. My wife hates the idea but I need to buy sometime to find a solution.
She is also of the mindset if she does not eat without engagement that is on her not me. Though does not sit right to let her starve herself over something that can be managed.
Your mom has early onset you tell us. I assume you mean early onset of Alzheimer's. The progression to late stage, where she doesn't wish to eat, happens early in early onset, and to be frank is a blessing. She should not be forced to take in food or fluid. She will be put on Hospice again at that point for more help.
Meanwhile, the only thing you can do is cooperate with Social Workers finding proper placement. Her care now should be palliative only. That doesn't require a lot of an SNF. It is basic care of a bedbound patient, not forcing food and fluids, and the end will approach, with Hospice and comfort care medications.
The one thing you must never do is allow any transfer to your premises. That would be care you are not qualified nor able to provide. She now needs several shifts with several people on each shift providing her comfort as she exits this sadness from which the only escape is death.
I am so very sorry. You will not be able to resign guardianship. Few judges allow this even in the case of your own illness. Again, I warn people, do NOT accept guardianship.
Even when they put her on hospice they did not force her to eat but since she had someone with her durinh each meal just engaging with her she was eating. They removed her off hospice since she gained weight and was no longer lethargic.
It is not an appetite issue she does eat fine under the right circumstances which is why the facility states they cannot meet her needs. Doctors already admitted it was not the right call at the time.
But yeah they did not force her to eat they just provided the meals but she was eating. When I did lunch and dinner she had no issue eating. She always eats lunch with me. So yes they do think it may be attention seeking behavior because it started after I had to stop dinners, but at the sametime when we ate together I did interact and engage with her which is how we use to eat growing up.
So it is hard to tell if it is done on purpose or she just going back to how things were. Hard to explain. Hope that makes sense.
You've stated you cannot afford to pay for any outside caregiving (which is expensive).
I would search for a non-profit, faith-based facility since they see the care as a mission and might be more willing to accommodate your very difficult situation -- even temporarily.
You may want to contact churches to see if they have Elder Care ministries and may be able to provide some in-home volunteers for a short time. My church has such a ministry but supplying volunteers can be challenging.
Have you contacted your local Area Agency on Aging for information and resources? Maybe there is a church that provides low-cost adult day.
I wish you success in finding the right care arrangement for your Mom.
Thanks for the suggestion, I will see what I can find and try.
They also have a theory that it may be a game, but issue is the communication aspect makes it rough and as my attorney explained liability still falls on the facility game or no game since she has dementia. Idk if it is a game cause that means she pushed it far she lost a lot of weight.
I think it is just a staffing issue, just like mine is a money issue.
Can you hire a carer with appropriate language skills to help at meal times? It might even be possible to pay extra for this to a facility. Your wife is strongly opposed to care at home- in fact to the point of leaving if you even try it. That raises the issue about whether your M is difficult in other ways that you haven’t mentioned. Your M has dementia, but you might choose to consider whether there are some ‘games’ going on, for example forcing you to spend more time with her.
Sympathy in a very difficult situation.
It is SNF memory care or nothing else. Even if she is playing games she got the point where they recommended hospice due to her not eating and lethargic behavior. I did not request it, what can I really do about that.
As I stated in a comment this would be a none factor if I had the money, but I don't.
Can you hire a carer with appropriate language skills to help at meal times? It might even be possible to pay extra for this to a facility. Your wife is strongly opposed to care at home- in fact to the point of leaving if you even try it. That raises the issue about whether your M is difficult in other ways that you haven’t mentioned. Your M has dementia, but you might choose to consider whether there are some ‘games’ going on.
Sympathy in a very difficult situation.
Does your Mom get taken to the dining hall and sat to eat with others at meal times?
I'd hire someone to come in at either breakfast or dinner shift to sit with her while you take the lunch shift.
My mom is kind of weird when it comes to eating she likes to ask about your day on repeat or stuff. The communication aspect makes it rough since she blends each language she knows.
Appreciate the suggestion.
I stopped dinner but kept lunch which prolonged things a tad but still one meal a day is not a whole lot so it did catch up with her.
Unfortunately, no I do not have anyone who would be willing to do that. Only child and no extended family near by.
Live in California so money is tight and my mom's SS check goes to the nursing home. It is frustrating, money would solve my issue. Rock and hard place, I do side hustles to pay for someone it defeats the purpose of me dropping the dinner shift. Wife and kids were upset I was not home as often.
It is so annoying you place them but God you still have so much to worry about and manage. Appreciate the suggestion.