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.
In some states at least, the state sets a minimum number of minutes that mealtime at a facility has to last, to make sure that residents who need help with meals or who eat on their own, but slowly, are not rushed through the process. One facility I'm familiar with had their shift change shortly after dinner, and there was a lot of pressure on the staff there to get the meal and cleanup done by the time their shift ended so they could leave on time and so the next shift would not be arriving needing to finish that process. In retrospect, I would have gone to the management and if necessary the ombudsman to complain that some residents were being short-changed at meal time.
Is your mother's facility even abiding by the state law? You can look up the law and regulations online If your mother needs, say, 15 minutes, then it should be on the staff to find that time at least for dinner. If it's an hour of one-on-one time that she needs, that's different. There should also be a patients bill of rights or something similar posted in the facility.
1) Contacting APS, and getting comments in writing.
2) Contacting your local member of parliament and any other local dignitory, so ask for their advice. Document that too.
3) Seeing more than one attorney, and seeing any free legal service you can find. Document the advice.
Even if what you get is ‘nobody knows’, that’s better protection than simply making up your own mind.
The first is the idea of a game. Implicitly, in this context, the idea that OP’s mom is playing a game would seem objectionable—but why? Games are play, and isn’t play fun and healthy? Maybe we’re thinking of a game as Manipulation. Maybe calling it a “game” means we think that the person is making choices that are arbitrary, disrespectful, inappropriate, or inconsiderate. Maybe we are feeling some stress, so we think, how can someone ELSE be having “fun” that involves us, but that isn’t fun for us? It isn’t fair.
So another way of framing this behavior of only eating when someone else is there might be: Communication. Whether or not OP’s mom is conscious of her message, there’s something being communicated by the behavior.
We are social beings, and as the OP told us, they used to eat in a familial way growing up. So when there’s no family feeling of warmth and connection, maybe it just doesn’t feel like her life to her. It becomes unrecognizable to her as a meal. In some societies the elders voluntarily go out on the mountain to die. I’m not suggesting that’s the answer here, but, pulling away from social ties is both a sign of loosening ties in preparation for ultimate passing, and also, a feedback loop where the person’s community is conveying by how they interact—or fail to interact—what that person means to the group, the value they have. And as people get older and older, their value does tend to diminish as other community priorities take over.
So maybe instead of Game, we can think of it as a kind of feedback loop, or negotiation, or communication, by which OP’s mom is signaling that, without the warmth of human interaction, her life doesn’t have as much value TO HER as it once did—and no one is to blame for that. We can’t always meet others’ needs. And the OP is still struggling to figure out how much value he places on his mom’s life and wellbeing, in the face of everything else going on.
I still remember the last time my FIL, who lived with us during his end-stage Parkinson’s disease, came into the kitchen with his walker, hoping to help with the recycling because I was there and would help him, and it was an activity he enjoyed, feeling engaged. But this time it was 10:30 pm and I just couldn’t give him the hour I knew it would take. He didn’t say what he was there for, but I knew, and I turned away from him in the moment. And shortly after that my husband became completely overwhelmed, and his dad went to a nursing home where he refused more and more to eat, or take his meds, and of course he declined. It’s a tough thing to balance your love and respect for someone, and the shifting priorities that are just a part of life.
I had another point to share, but I’ve gotta go do something else now. ❤️
Another possibility is to replace yourself with an object,as in a doll, stuffed animal or an AI pet( I saw a real cutie, so life like) that could be a companion for her. Eat together and excuse yourself from the room, leaving them alone. Eventually, it will become a habit for her to eat with your replacement? Those little AI animals are so realistic and some actually cuddle. Does Mom understand the situation you're in? How have you discussed it with her? Maybe if she understands that she could lose you and your wife and her grandchildren she might make an effort? She's too young to be this difficult, she has lots of years left. Your wife knows that and it's a long term burden to place on your family. I'm surprised that you are tolerating this so far, what a tug of war!!
So, this being all on your shoulders, it's time to set the boundaries before you're torn apart. Tell the facility about your situation and you need time to work in out. They should understand!! Tell Mom and family WHAT YOU WANT TO DO as you're the middle man and you can only be stretched so far. This is what you can do for both sides and keep yourself well! You're not going to be there for either side if this continues, you'll end up ill and needing care yourself. You must be close to a nervous breakdown, panicked and torn with so much responsibility. Take charge and take care! If this were me? I'd scream bloody murder in my car and beat on the steering wheel and then decide what's best for ME to get through this. Caregiving sucks, it's a no win, just lots of sacrifices with no appreciation. Good luck friend
"I'm the best Me,
I can be"
As for letting it out, will say this coupled with a 24 hour gym have been great for my overall physical health. Mental health is questionable, but yeah in the best shape I have been in since my swimming days.
In her world sharing dinner as a family is the norm, that is how we did it at home. No TV just the mom, dad, and myself together at the table. It was the time we spent with one another. Finding out how our days went, my mom would always want me to share one new thing I learned. Even with her dementia she still acts like I in school and asks what new thing did I learn.
Another poster hit the nail on the head, dinner is family time. I wish Zoom or FaceTime worked but yeah. Trust me I even thought of making a 3D model and creating a pseudo virtual assistant. Build the data set off everything I know so she can interact with a virtual model of myself, and even other family members that have ghosted her over the years.
Her world has become much smaller, but I have to protect myself. Maybe a part of her does want to do "The Long Walk" so to speak but I legally cannot let her starve herself without trying to get her to eat. I also just don't buy that theory as others have pointed out because she does eat.
I do agree with that one poster who mentioned family time may he her only reason left to live. Way I see it is if that is the case why take that away from her before dementia robs her of it anyways?
Dementia takes and takes. All it knows is destruction, it does not need my help in destroying what little happiness she has left.
Thank you for the words though, and thanks for reading my little rant.
The facility is also going to be in full CYA mode they are 100% also documenting everything. When it comes to dealing with Guardianship and courts being proactive is generally for the best.
OP don't gamble with the courts you are not rich, you are a normal person.
Once she was placed I mistakenly stopped looking cause she was placed in memory care and I thought that was it. Never thought this would happen after I stopped eating dinner with her.
The plan is to find alternative placement but first I want to see if I can come to an agreement with her current facility to keep her if I make sure she has someone to eat with her three times a day.
Getting ready to have breakfast with her, and going to try a bunch of different things to front load her calories. Her doctors are okay with the idea and her numbers are solid so they said I could go heavy on suger if need be since it might be a taste bud thing.
I do know what she needs, just unfortunately I am limited by the fact facility does not have the staffing and I don't have the extra income to hire someone. Until, I find a charity service or make more money it is on me.
That is what makes this situation so frustrating since the fix is easy yet hard.
Got home around 7:30 my time, but got out of work at 5:30ish. Just one day but was a good one. Still got to hang with the family thumbs up all around from me.
I agree with the poster below who states that you going there 3 times a day is not necessary to see that your mother eats enough. Her calorie needs will not be great, and should be able to be met. as someone suggested by a couple of smoothie type meals a day. I suspect you going there 3 times a day is more about meeting your needs than hers.
Do you have a job? How can you maintain work while devoting this much time to your mother? It seems to me not doable.
Personally I would be scouring the countryside to find a facility who would give your mother attention at meals. When my mother was in an NH. the aides helped her and others to eat.
Your stated solution is to be with your mother for three meals a day. Looking for another facility comes after that. So you may be bound to this regime for some time. I have to wonder at your motivation and your ties to your mother. All the legal speak seems to me to be justifying your position. And all this at the cost of your immediate family - wife and child/children. I find it quite sad.
BB is putting an enormous effort into supporting what he has decided to do. If he manages to post this on his phone on the one-hour trip home, he would definitely be in legal trouble where I am. If he is doing it at work, he needs to concentrate on getting a raise. He has been trained into this by a very clever 67 year old. W is better off out of it.
If you must know, I do park and ride. So I am not driving the entire way to work. Secondly sometimes things are slow and I check my phone throughout the day.
Maybe if we had dual income household I could use money instead of time but I cannot force my wife to work. That is her call and her choice. All I can do is provide the best possible care I can for those in my life.
Also remember the neglect is based off the end result. If she is not eating and dies from starvation you really think courts will be like yeah she was old it happens? I think you are underestimating that some courts actually care about the wellbeing of their wards.
The end result is what will determine the neglect not just the action in itself.
Leaving your 6 year old alone is not inherently illegal. If nothing bad happens no one is none the wiser. Is it smart? Probably not but sometimes it has to be done.
Though if your six year old burns down the apartment due to not being under supervision you think courts give a shit about the raw intent in the grand scheme of the end result?
Was looking at sites like care.com to see what the going rate is. Not keen on taking extra work. My current job ia stressful enough as is. We will see though.
I am maxing out my contributions to our accounts including our children don't want to skimp on that but worse case I am thinking of it. I can still do lunch cause she is close by to my job. Would be around 80 a day, since many have four hour min.
If we cut we can cover the$ 1600 extra a month. Wife would not be pleased. It adds up and that is not counting weekends. We do weekends that will be $2240.
I will have to figure it out and check more in depth.
That will be my next attempt. I can swing 20 a day, but 80 a day adds up pretty quickly. I did try to get her LTC insurance but she did not pass underwriting.
Unfortunately, situations like mine are becoming more and more common. Maybe I am naive but I don't agree that this has to be an either or situation between good husband / father and son. Like some have mentioned here. I think one can be all three.
Even her doctors find my mother's situation sad. Health wise she took very good care of herself. She has no other issues, we don't even know why this happened. Was fine the day before next morning she was extremely confused and downhill from that point.
Her MRI's don't show signs of stroke or infracts chronic or otherwise. It is weird. We tried things like the infusion and stuff to slow progression but yeah no idea if it did anything or not.
I legit lost my mom that day. She was fine the night before, last time I saw her normal she was having a glass of wine watching baseball.
Something switched. It is painful, and sad. If it was not for support groups I would not even have somewhere to vent. You know the worse part about all of this, I never got any of her recipes. I miss the little things so much. Her saying see you tomorrow god willing. Her putting up her hands in a playful motion like she was going to fight you when you say something silly with that big smile of hers. I miss my kids will never get to try her cookies or have her take them to a baseball game. I hate that the person who showed me what strength truly is now is at the mercy of others.
This was a women who taught herself many languages, worked her way through school, who's parents left her with her grandparents. Never once heard her complain about the hand life dealt her. She always took everything in stride. As she use to say, god does not give you more than you can handle.
I will get through this, I am her son after all. I have the strength of both my parents on my side.
It is sad you can take care of yourself and still get screwed over in the end life is really funny. Worse part people will still judge and act like your life suddenly has less value or even blame them for their lack of planning. Like that does anything. My wife does that and likes to say don't live in the past. Yet she focuses on my mother's lack of planning all the time. It is weird. I get this is a less than ideal situation. No one our age should be in this situation. We are barely in our 30's. It is not fair but it is what is no. All we can do is adapt and move forward.
Keep putting out your feelers to see where you can get help.
I am wondering if your once-a-day meal visit is enough. Perhaps you can hire a person for the midday meal on Saturday and Sunday. That’s only ~$50 a week. Our AL has several “off menu” items you can order any meal, like toast and an egg or other light and simple things. Perhaps there is something like that they can serve her, but if she doesn’t eat it’s no big deal. I do not think three meals a day is necessary, and if she skips breakfast and won’t eat much dinner that’s ok if she had a good lunch. Again, perhaps focus on getting one good meal a day in, not three.
Somehow you’ve also found an attorney who is enabling your martyrdom by agreeing that you will go to prison for murder if you don’t spend all your time hanging out with her for every meal.
You are intent on arguing with every piece of advice you are offered because the only answer you seemingly will accept is that you’re right, you have no choice but to perform this exhausting dance with your mom, and that your wife is being unfair for thinking you should come home and pay attention to your family every once in a while. You’re so insistent that your mom is entitled to “family time” with you at every single meal but you’re not giving that same family meal time to your own family even once a day. This whole discussion is wild to me.