What causes resistance to care?

My mother has been through numerous episodes of refusing foods, even foods she previously liked. She does not have Alzheimer’s. The first experience we had with this occurred for several weeks following an unexpected surgery. Getting calories and water into her became a daily struggle. Definitely supplement with a nutrition supplement such as Boost or Ensure, which are formulated for adults who are not eating well. We use the extra protein version as our patient is eating very little food protein ie.beans, meats, dairy.

Over the past few years we have struggled with food and fluids for extended periods of time. There appear to be no legitimate medical causes other than a revulsion to food. She is closely monitored by her doctor and nurses and we care for her at home. Her weight has decreased with each episode with some weight gains. The doctor has placed her on two types of anti/depressants. One she takes daily and the other is given to her when she is going through specifically bad days. We also give her over the counter B12 gummies each day of 1,000 Milligrams. Theoretically, Vitamen B12 stimulates appetite and improves health of red blood cells. Doctors do have the ability to prescribe appetite stimulates. In my mother’s case, traditional prescriptions for appetite are in conflict with several of her meds so we could not use them and continue with the anti depressants and B12.

Gradually, we have settled into doing the following : We have her eat from a tray rather than at the table as looking as the serving bowls of food and seeing food on our plates always generate a negative response. She eats from a saucer on which we place small amounts of 3 to 4 choices. Examples would be a few cashews, a few pieces of an orange, a Cheese slice cut into small pieces, crackers. Do not make a big deal out of “you have to eat”. Try to just set in front of her and leave it.

Another technique we use regarding eating is to break it down into several small offerings. Example: breakfast; 2 hours later a Boost, mid afternoon a snack, supper, and a Boost at bedtime.

To boost nutrition, powdered milk can be added to puddings, milkshakes, mashed potatoes, even meatloaf. Extra egg can be added to meatloaf. These people are eating so little we strive for as much nutrition in each bite as we can get in there.

A serious issue also developed with fluid intake. This caused dehydration which resulted in hospitalization and IV intervention. She does not like to drink and never has but age and health dictate she MUST. Her doctor suggested sparkling water and/or flavored water. This miraculously has worked. Push beverages as much as you can, and keep several options on hand. Even an ounce of liquid at a time is something.

Concerning hygiene, a savior for us has been stocking up on and using wet wipes. These are made for humans and do a decent job of getting hands and other body areas a bit of a spot clean. Baths for some seniors is traumatic. Our patient is afraid of bathtubs and showers for reasons even she cannot explain. Bathing can wear them and you out, that is a for sure. Been there! Also, check to see if you’re MIL gets cold easily. This is another area wherein we turn the heat up and keep the bathroom unusually warm. We usually do teeth brushing with a bowl and a glass of water at a table where she sets down and brushes, spitting into the bowl. I cannot explain WHY this works for us, but it does.

Patience is a big asset if you can muster it. Very challenging dealing with these things. One of the reasons we keep her at home is that we know she will not get the constant care she gets from us. You are in a tough place for which there are no easy answers. The items we have developed with the guidance of her doctor and our experimenting have definitely made a difference in our situation. Best wishes to you snd your family.

This is all typical with dementia. She may be scared, frustrated, angry, etc. because she has so little control and nothing seems right to her. She needs to be in memory care ASAP. If you can afford to hire caregivers to be in the home until you can place her, at least they could relieve some of your responsibilities.

“Placement” is not so easy for some people. Not everyone has the funds for memory care. That’s thousands of dollars a month that many families do not have.

And Medicaid facilities are often substandard and understaffed.

It seems like the knee-jerk response to almost any question on Agingcare is “Placement - it’s that simple!”

It’s NOT that simple.

Catlover99: With late stage Alzheimer's at play, her brain does not possess the capacity for logical thought processes. She requires memory care facility living.

Since my loved one was diagnosis with dementia , I have seen similar things happening.. Cleanliness is one of the top things that we argued about. I know for my man , “in the reality that he lives in” , he really thinks there’s nothing wrong with him, and there’s no need to bathe. I also know over the past five years that his taste has changed dramatically. The things he used to love he no longer eats. Another thing I notice is his sense of smell isn’t what it used to be. And I think that adds to the fact that he doesn’t smell himself. Please remember her “BRAIN IS BROKEN “. She can not change what is happening to her, and neither can you. But you can change how you react to her . As a suggestion, the first thing I would say is find a good Caretakers group. Then start reading as much as you can about the dementia and Alzheimer’s. Look into what type of help is out there. You are not alone . Call your local council on aging and see if they can work with you. Hospice in some areas offers Palliative care . The Alzheimer’s Association has a wealth of information . Most important is to tend to your own mental health and well-being. For me a mild antidepressant, Caretakers meetings and a therapist has helped immensely. Take the time now to check into memory centers, make sure someone in the family has a power of attorney, so an elder lawyer if you can … The problem is things are not going to get easier. They will get more difficult with time .Check UTube for any thing you can find by Teepa Snow . She is an expert in the field . Prayers are with you ..

A Geriatric Psychiatrist can medicate mom so that she can function or can help evaluate her mental health issues and assist you in placing her. Put down your end of the rope and let the professionals take care of you. Just make sure you become the best "visitor" you can be. Help your children develop compassion and respect for their elders so that you are not ghosted when you aren't who you used to be: aging isn't curable.

My heart goes out to you and your family 🙏🏼. My dad has Parkinson’s dementia, Alzheimer’s and many other issues. The best advice I received with his bathing issues is to set a schedule up and stick to routine as closely as possible. When I got help(respite care) I made sure that the help could give the weekly shower so the resistance or combativeness/arguments would stop with me. Any time my dad has a blowout with incontinence I always claim that it’s so much of a mess that it would be faster to get it off in the shower, then I add that it’ll make him feel better if we just get a whole shower done early and he can be done for the week.
My dad’s meals are now also designed around his eating abilities, I encourage him to drink more water for his muscles/bloodstream and his brain’s function that definitely helps with the dementia and his physical abilities.
His mentality is so degraded the using the tactics for the age range of a toddler is very helpful. Even if it’s a smaller resistance, the job gets done.
I also get my granddaughters(9&6yo) often and they love to help remind him of the next steps in what needs to be done. When he resists them, we make it a game and he plays along with them.
If it takes a village to raise a child then it also takes a village to care for our seniors. My parents never cared for their parents so their brains never had that memory to recalled upon.
I tried a nursing home with my dad 2x and the results were horrible for him. I do give him amazing care and he is in better health when at home than in care. We tend to forget that when our family loses ability and mentality that it’s not their fault but they don’t see it at all and they think they can still do what they’ve always been able to do. They don’t know that their mind is deteriorating and refuse to acknowledge it.
If you do seek out a facility for care, visit it and watch the caregivers/staff, ask to interview a minimum of 2 clients of your choosing during the tour, ask for their schedules of care, menus, and a copy of their legal care requirements before placement, be forthcoming with them about the future involvement you are choosing with the family member in care.
Some facilities in some states may have laws protecting the facilities care requirements of a client more than the clients protection so also do research there, make sure all the legalities (DPOA/Health POA) are clear before admitting so that both the client and family are protected with legal authority.
Hope this is helpful 😇💪🏻

What you describe can be part of the dementia. Behavior changes. For the shower, if she sits on bench and showers, it's possible she is associating shower time to being cold. The air around the body can get quite cold when water is not running on the body like when you stand under it. Maybe use small heater to warm up the room first? Or hand her some warmed up body/butt wipes and tell her to clean all the important areas if she totally refuses shower. Lay her clothes out and don't do a lot of talking about changing clothes. See if she does it on her own.

One very interesting thing you mentioned: You are keen on the idea to place her in facility because 'she's not your mom'. Why would it be acceptable for hubby's mom, but not your own? If husband agrees with your decision to place her, remember that in the future should your mother get into similar situation. More than likely, he'll say to put your mom in facility care because that's what we did with my mom. ..just a little surprised by your comment. -- Keep in mind, I understand how hard caregiving can be. And there may come a time you have no choice except facility care. However, if in the back of your mind you plan to take care of your mom up to the bitter end, hubby may feel the same way about his mom.

Wanting to let you know that it is very common for individuals with dementia to refuse showers and changing clothing. Having a professional come to do that can work. I suggest checking out your local home care agencies before sending to a facility.

Are you shouldering all her care? If other family members are equally supportive with MIL, perhaps she’s engaged in a power struggle with you. Let others take the lead while you enjoy a well deserved break. When the family has to mange oppositional behavior the discussion to seek placement may be more productive.

Oh my goodness my heart aches for you, I understand what you're experiencing but probably not to the same degree. My mom is in mid to late stage dementia and she too was resistant to care, showering, getting dressed etc. First and foremost don't treat her like a child, though it's tempting because she's acting like one. Always use a kind and reassuring tone of voice, lay out her clothes for her, and when she gets up, walk her directly into the bathroom (don't give her a choice), turn the shower on for her, provide assistance if she needs it. Have her meal ready for her with her favorite books, magazines, puzzles, pictures, within easy reach. Turn the TV on to her favorite program if she likes that. Try not to get exasperated or impatient, though it's hard, remember she can't help it, it's the nature of this insidious disease. Also remember somedays she will be more alert and lucid than others, I've learned that with my mom, somedays she may be ready to get up at 9 a.m. somedays it might be noon or later. It's important though to maintain a schedule for her meds, bring them to her in bed if she's not ready to get up yet. If she's incontinent like my mom is, put a highly absorbent poise pad in her Depends (along with Desitin) before she goes to bed at night, this will keep her skin from breaking down. I hope I was able to give you some helpful information, believe me I've had to learn the hard way. I wish you all the best with your caregiving and always try to remember and even rejoice in the labor of love that it is. Best to you.

Call a local hospice of your choice, speak with the clinical supervisor and, share the situation. The hospice group will be glad to speak with you/ family and, may be able to offer you support, directions, assistance........

These are all very typical issues. I know it can be difficult to not let it drive you crazy. Instead of a shower, is she able/ willing to stand at the sink and at least give herself a washup? If she won't stand at the sink, can you step into the bathroom with a washcloth while she is still on the toilet and get her to do a quick wipe.

Sadly, dementia causes people to revert....you remember how hard it could be sometimes to get your child to let you change their diaper. they roll and squirm around. I used to put my leg over their chest to hold them while I got the diaper changed. Can't do that with an adult.

Teepa Snow has some great videos on YouTube.

Find placement for her as soon as it can be arranged. Until then it would be worth the expense to hire outside help to save your own sanity and safety.

'Late Stage Alzheimer's' seems to say it all, if we delve into the literature. Plus, we humans are still animals, part of the animal kingdom; folks who become so very disabled revert to not only 'childlike' behavior/stages but in the animal kingdom the individual who becomes less self-sufficient, more dependent, essentially is at great risk: in herds, the 'crippled' individual goes onto the 'menu', so to speak. It's no longer a personality thing but an instinctual thing: to maintain at least the illusion of coping, competency and agency as long as possible. Resistance to help may be your MIL's attempts/determination to stay relevant. And maybe even that 'childlike' rebellion, the Terrible Twos all over again. You have stepped up for her care; if she is beyond your capacity a placement may be the kindest thing for her, no judgement, just being realistic.

Your kids' needs come first. You can't focus on raising them in this environment. Placing her is not cruel; she's beyond your care, and your children should come first. If she were in her right mind, I'd bet she'd agree.

It’s time for placement. Find a MC facility you like and then you get her to go by telling her that she has a doctors appt with a new doctor that is mandatory in order to keep her insurance and you take her to MC “where the new doctor is.”Or you tell her that you all need to stay somewhere else for a few days while work is being done on the house (plumbing, electric). Take her to MC and if she asks where you are staying, say “this nice place was full so you are staying here and we are staying with friends.” I have a friend who got her mom into memory care by saying they were going to lunch at an hotel, and lunch was lunch time at the MC unit. The front desk said “your lunch reservation is ready” and they were taken to the dining area and seated. They ate lunch and then her mother was transferred to her room from there that my friend had already set up for her and that was it.

Expect a rough month with her wanting to go home but after she settles in it will get easier with time. Never perfect, but easier. Take your life back.

Our mother has this problem. When we had care for her at home, she would resist doing things, and would ask them to leave ("It's my house"). This went on for years until we only had 2 caregivers left who could sort of handle her. She has vascular dementia. Finally, we had to put her in a memory care home, where she also resists care. They are trying behavioural things and we have authorized medication if needed. I think you are going to have to put your MIL in a home at some point as there is no good solution for this problem for elderly loved ones.

Sorry Cat. You can’t fix this . I vote for placement in MC. MIL is not going to start cooperating more for family members . It’s only going to get worse . Her brain is broken . She sees herself as the parent and she won’t listen to you or your husband anymore . She needs to be cared for by non family. You said she acts better for the aides. Her behavior is too disruptive to your home and family . MIL will be better off as well not seeing you all day long , because she’s on automatic to give you a hard time and be agitated when she sees family to try to boss around .
Good luck .

What about bed bath’s? I and aide wash my mot in bed. She doesn’t walk. Shower days are over. She won’t even lift her arm when asked. She can’t.

My LO for me:
Refuses to change clothes.
Resists showering.
No to offered drinks & food.

My LO for aides:
Will change clothes.
Will negotiate shower days.
Will try drinks & different food.

I try the same approaches.
- Offer choices where I can (red shirt or blue shirt? But it must be a CLEAN shirt).
- Respectful language
- Use logic (zero success 😩)

I don't know... Once a Mother & in charge just won't be told what to do by the youngsters??

But can still 'save face' for a 'Professional'?

If able you can employ Aides to do the showering/dressing. This may extend home care a little longer. But otherwise, time for placement.

It sounds like time for placement. The time for giving her choices about what to eat or wear or when to wash has long since passed.
Does she drink the Boost or Ensure shakes? Pretty much all of the clients I've ever cared for who had late-stage Alzheimer's as you put it or advanced dementia would still drink those shakes.
I am sorry to tell you but she will have to be forced into the shower or to be washed up. The time for asking her to get changed or if you can help her in the shower is long past too.
If you have to be a little mean and intimidating to get her cleaned up then that is what you have to do. Believe me, a person recovers a lot easier from a little meaness then they do from a UTI, skin breakdown, or incontinence sores which all will happen if she is not kept clean.
It's good that you have some honecare aides. She does better with the homecare aides because they aren't as familar to her as you are and she doesn't know what their reaction to her refusing and complaining will be.
When she starts up with the complaining when you're with her, tell her that's enough and no one wants to hear her complaining. Don't yell and don't get angry at her. Think of her now as an adult-sized three year-old because this is pretty much what she is now.
We do not allow children to go without eating or washing. Handle your MIL pretty much the same way.
It's going to be hard for you in the meantime before you get her placed.
When it's time for a shower or a wash-up, it's time for a shower or a wash up. This means there will be no tv, no food, no drinks, no conversation, and no attention until that gets done.
You can be more flexible on the eating as long as she's still drinking and will take a nutrition shake.

Listen to AlvaDeer! She says it well.

Good luck to you in finding a good place for MIL.

There really is no way I can think of to manage this. As to eating, there is little nutrition needed to keep our elders going. I would let her pick and choose what to eat. To what end are you forcing her to eat? To prolong a very miserable existence?

You are correct that placement is the answer. Folks there are more trained and more able to simply march people through those activities of daily living, such as shower time, matter of factly. And they take guidance from caregivers much more easily than from families often enough.

Do get started on placement. This will not get better and will almost certainly get a good deal worse. I am so sorry. But you didn't cause this and likely cannot fix it. You aren't alone, little help that this knowledge may be.