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Alpenglow33 Asked January 2023

MIL very agitated and not eating much in memory care. Any advice?

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.

Natasana Feb 2023
Speaking from experience, fentanyl can cause nausea. I broke my collarbone a few years ago and the ER gave me a fentanyl injection. I had bad nausea and dry heaves for about 24 hours. So as AlvaDear said, the fentanyl may be having an opposite effect of what your mother needs. If you're looking for ways to encourage your mother to eat, fentanyl may be working against that goal.

AlvaDeer Feb 2023
It sounds to me as though the downward trajectory is continuing, and yes, I would speak to MD about Hospice options for your Mom. I also think that the MD who ordered the fentanyl patch should know that it has had the OPPOSITE affect to the one hoped for. This is about the strongest drug known to us, and it may be causing more agitation rather than helping.
Alpenglow33 Feb 2023
Agreed on the fentanyl, we are hoping there is some kind of anti-anxiety med that comes in patch form since she won't swallow pills anymore.

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babsjvd Feb 2023
I had not finished reading your post, when I got to the part where she cannot walk, stand or sit , my brain thought hospice is needed. My mom declined rapidly from walking to not being able to stand and pivot. She was on hospice by this point. First came the wheelchair, hospital bed table, hospital bed, hoyer lift , then a wheelchair that reclines so she wasn’t slumped. Along with the medications, depends, chux, lotions , mouth swabs etc..along with a weekly visit from the RN, twice weekly CNA , clergy 3 x month, social worker monthly… all eyes on my mom , who advocated for her with the memory care when things were not right.
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.
Alpenglow33 Feb 2023
Thank you, we are asking for a hospice evaluation ASAP. It seems her ability to stand and sit goes in and out right now depending on her mood. Sometimes she manages and sometimes she slides down out of her recliner and they find her on the floor. She can only stand currently if held steady by two caregivers, and not for very long.
TouchMatters Feb 2023
It is understandable she is overwhelmed, frustrated, frightened.
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
Alpenglow33 Feb 2023
Thank you. We are definitely in the mindset to follow her wherever she is naturally going right now and not try to force anything. We don't want her to suffer and it is very hard to watch.
Cp31979 Jan 2023
Sadly I feel like this is just part of some peoples dementia process. Refusing to eat is not uncommon. Becoming unable to eat is not uncommon. Maybe she will soon be out of her earthly misery. That sounds like a good thing to me…

golden23 Jan 2023
My mother had vascular dementia and that sounds much like her last months, I think an evaluation for hospice is suitable.

lealonnie1 Jan 2023
Sounds like you are not allowing her to try meds that might greatly help her, like anti depression meds and Ativan for agitation. I'd dump the Fentanyl patch yesterday.....you're fearful of side effects yet agree to THE strongest narcotic ???? That makes no sense to me.

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.
Alpenglow33 Feb 2023
I think you might be confusing what I (OP) wrote and what other commenters wrote. We are not fearful of anti-depression side effects or opposed to those meds at all. The problem is MIL is refusing to take pills. That's why they went with the patch. We just agreed to what the doctor suggested, we didn't fight anything. One reason we were considering bringing hospice in is because it sounded like they might have access to stronger meds or other ways to get them into MIL.

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.
Msblcb Jan 2023
In my case the ALF was very clean and I never noticed bad smells. The room was kept very clean. While mom’s food had to be blended due to her chewing, the food was good. The chef made veggies specifically for my mom. I also made a full meal every day for her with homemade goodies. She loved Mexican cornbread. When she refused the cornbread, I knew something was up.

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.

BurntCaregiver Jan 2023
Fentanyl is a narcotic and often narcotics kill a person's appetite and they do not want to eat.
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.
Alpenglow33 Jan 2023
She just got on the fentanyl last week and the food problem is ongoing for many months. She was refusing food at home too, even though we were cooking what used to be her favorite foods. We can't bring her food every day. My partner tries twice a week or so but she usually just picks at it a little. Thankfully her memory care place doesn't smell too bad nor does her room.

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.
Msblcb Jan 2023
Alpenglow33,

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.
BurntCaregiver Jan 2023
That 'failure to thrive' is BS. If the food being served is absolutely disgusting, the environment smells like sh*t, and the person is surrounded by people smacking their food and slopping it all over the place, they aren't going to want to eat. Even people who have dementia and eat this way themselves will be put off their food seeing others doing this.
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.
Msblcb Jan 2023
My mom was in an ALF and while I did not have a formal diagnosis, believe she had Vascular Dementia. She was an introvert and struggled to adjust. She would not go to the dining room and would eat in her room. I think I would have had these issues in any facility she was in,

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.
Alpenglow33 Jan 2023
I'm sorry to hear about your mother. We would feel blessed if MIL were to pass soon. She is suffering, her quality of life is nil. May I ask if the staff at your mom's ALF tried medicating her when she was aggressive?
NeedHelpWithMom Jan 2023
Oh, my! This sounds absolutely awful.

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.

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