My MIL (79, early stage 7 dementia, we believe vascular) went into memory care last November after a six-month period of very fast stair-step declines and has continued to decline there. While still at home, she was only barely mobile with a walker and had lost much of her appetite but could still be coached to eat. She became doubly incontinent and started collapsing a lot and we had to call EMTs to help us get her up. Ultimately she was hospitalized after stroke-like symptoms that turned out to be a bad UTI and went into care after treatment with IV antibiotics.
She is very upset about being in memory care - she was completely dependent on my partner, her primary caregiver, for comfort while in our home (and refused help from me or her hired caregivers). In the last month she has lost her ability to walk, stand or sit unsupported and spends most of her time slumped in a wheelchair crying, cursing and ranting, which is very unlike her. She also sometimes refuses to let the facility caregivers change her and gets aggressive with them. She recently started refusing to take her pills (blood pressure meds and trazodone at night for sleep).
She is mostly uninterested in the food the facility gives her and no longer understands how to use utensils. She occasionally accepts being spoon-fed by a caregiver and does eat finger foods like chips and popcorn when my partner brings them to her. She is still overweight so not really in danger of starving but we think she's probably not getting more than a few hundred calories a day.
The facility doctor thought her arthritis pain might be causing her agitation and gave her a fentanyl patch (on her back where she can't tear it off). It doesn't seem to be helping, she's more agitated than ever. She tested negative for a UTI. What kind of meds might they suggest next?
Visiting her is very hard and sad for my poor partner, she mostly keeps her eyes closed and says angry things that don't make sense. My partner has found that putting on a familiar movie and giving her salty snacks calms her down for brief periods, she can still shovel chips into her mouth.
Does it sound like she is a candidate for hospice? I'm also interested in hearing any anecdotes from people who have seen similar things happen to their loved ones. Given her fast decline up to this point, it is hard to imagine she will be around more than a year, but who knows.
We do know that despite being understaffed (after a big recent covid outbreak), her facility is doing their best. They do try to coax her to eat when she agrees to go to the dining room, sometimes successfully, but if she refuses, they bring a tray to her room and it remains untouched. We are hoping they can at least resolve her agitation - it's really upsetting her two cousins who visit weekly, they are putting pressure on my poor overloaded partner to move MIL to a different facility and we are positive that wouldn't help.
All I can say is that I admire you for placing her in memory care. That was absolutely the best decision for all of you.
Your cousins don’t have a right to pressure your partner. Ignore them or tell them to stop.
I do not have any experience with this particular situation. My mom had Parkinson’s disease and dementia.
Others on this site do have experience and will be happy to offer advice.
Best wishes to you and your family.
She began to enjoy the activities but within a couple of weeks went from being very passive and sweet (which was her normal personality) to refusing baths, refusing meds (hiding them in her pockets) being aggressive to staff and barely eating, I tried everything and checked for all the possible reasons….UtI, potassium issues, B12. I tried every possible food to get calories in her. I would record her meals and could barely get 500 calories in her. She lost interest in all of her favorite foods.
She passed in November. It was a rapid decline. Hospice was called in and predicted 6 weeks and she was gone in 5 days…much faster than I or anyone could have predicted.
Now that I can see things a little clearer, I believe she had some type of stroke. Something started the decline. She never recovered.
I would check for anything that may be causing the issue. Sounds like you are doing that. UTI’s can be vicious. It may be helpful to have her evaluated by hospice. We had multiple hospice options. I ask for referrals to be sure I chose an organization that was good,
They can provide good information as to what you are facing. The good news is that if she qualifies and eventually gets better, she can come off of hospice. While my time with them was short, they offered help to me that simply cannot be measured, I would have been lost without them.
My prayers are with you. This is not an easy journey. You make the best decisions in the moment you are in. Keep us posted.
God bless.
They did try an appetite enhancer and an antibiotic due to a wound issue on her leg, They diagnosed her with “failure to thrive” which, for me, meant absolutely nothing. We spoke about anti-depres. I was afraid of the side effects. We chose not to try meds to calm her. She was already struggling to take the numerous pills she had. She had 5 or 6 pills per day already and I would find them in her pockets, her bed sheets etc.
When she began to refuse her meds, it was hard to know if that had an effect on her condition. A merry go round of questions with few answers.
hope I am making sense.
The NH home wanted to give my father an appetite enhancer too. I told them instead of another pill, we're going to try serving some food that isn't absolutely disgusting. When we started bringing his meals and having him eat away from the other residents and in an area that didn't stink, he would eat and well.
Also, if she's upset about being in memory care, she might not be as far gone as you think.
There are many reasons why she isn't eating. Ask the first and simplest question.
Is the food they're serving in the memory care nasty? My guess is yes it is. When my father was in the NH for a few months before he died, we had to bring his meals because he would not eat the gross and nasty crap they were serving. None could blame him. I wouldn't touch it either. My father was Italian/Greek. He'd starve to death first. Another reason why a person won't eat in memory care or a NH is because these places usually smell bad. Try bringing her some good food and have her eat in an area that does not smell and is away from the other residents. This will likely work if as you say she'll still eat chips and popcorn.
She is not very coherent these days and says weird things like "There are no salty babies here" and talks about "the lady with the fish" so it's hard to tell exactly what's going on with her, but she is definitely an introvert and clearly does not like strangers taking care of her. Unfortunately there's nothing to be done about that.
However, My friends are right, these things can impact someone adjusting for sure. I do not believe it was a factor in my case but absolutely something to add to your list of potential causes.
I also don't buy that the food is so dreadful and the place stinks, yada yada. Mom's memory care was clean, well kept, no odors at all, and the choices of food were good, especially considering a resident could always order a sandwich or bowl of soup.
I'd look into a hospice evaluation immediately for your MIL. When my mom was approaching the end of her life, her appetite was greatly diminished and she was even turning down her favorite cookies and treats I'd bring for her. She had great success with Ativan for her agitation and late day Sundowning and the meds didn't turn her into a zombie. She also took the highest dose of Wellbutrin for her moods and depression and it made a HUGE difference to her quality of life.
The 2 cousins need to butt out of this situation entirely! What makes them think a different memory care would result in a happier mil? If she's approaching the end of her life, which sounds very possible w stage 7 dementia and all the rest of her issues, then she needs more comfort measures to be taken on her behalf. That's where hospice is a big blessing.
Wishing you the best of luck with a difficult situation.
It also wasn't me that said the facility smells and the food is bad. The food looks fine and her facility is very nice and well kept. MIL has been very picky for the last year or so, though. Her range of acceptable foods grew smaller by the day while she was at home. She refused anything that didn't look to be in the exact familiar form she expected. So that is likely part of the problem. We are going to ask the facility if they can start giving her a limited diet of finger foods that she likes.
My initial thought was 'depression' and she is giving up. If I were in her situation, I would want to give up too -
While this isn't easy to write, I would recommend shifting your/partner's thoughts - to ' flow with her,' where she is heading vs 'trying' to keep her alive. She is miserable. If this was my relative, I would get her on medications to ease the anxiety and calm her down.
By all means, call Hospice. A person doesn't have to be diagnosed as in the process of dying to quality. They can provide some services although my personal experience is, unfortunately, disorganization and incompetence. It depends on the Hospice 'group'. Years ago, the two social workers working with me / my client couldn't have been better. I can't say that with my current situation needing / dealing with [a different location] Hospice. Whatever you decide, be sure to follow up with everything they say they will do. Businesses have changed. People / employees come and go in a flash... Covid takes its toil.
I researched a bit and copied below:
What are the symptoms of vascular dementia?
The symptoms of vascular dementia depend on the location and amount of brain tissue involved. Vascular dementia symptoms may appear suddenly after a stroke, or gradually over time. Symptoms may get worse after another stroke, a heart attack, or major surgery. These are signs and symptoms of vascular dementia
Increased trouble carrying out normal daily activities because of problems with concentration, communication, or inability to carry out instructions
Memory problems, although short-term memory may not be affected
Confusion, which may increase at night (known as "sundown syndrome")
Stroke symptoms, such as sudden weakness and trouble with speech
Personality changes
Mood changes, such as depression or irritability
Stride changes when walking too fast, shuffling steps
Problems with movement and/or balance
Urinary problems, such as urgency or incontinence
Tremors
I don't know if my feedback helps at all although it seems like 'relaxing the energy' would help-and that starts with accepting what is and allowing the process of decline to happen. Believe me, I know this is not easy and perhaps counter-intuitive. I try to put myself in the other's shoes and see how I would feel - confused and scared, and mental and physical challenges. I likely wouldn't want to eat either.
Gena / Touch Matters
Get hospice on board. They will probably give morphine to treat her pain… my moms was a low dose until the day before she passed.