How to handle refusing care

M1

Care plan meeting yesterday at MC. Biggest issue is that my partner refuses most help of any sort. She is refusing bathing, change of clothes, oral hygiene, podiatry, refused physical and occupational therapy so that they had to discharge her. Refuses to come out of her room for meals. Continues (after 18 months in MC and six months in this facility) to pack up her room as if she's leaving. I'm trying to back off for my own sanity and physical health and limit my visits to once or twice a week.

Im afraid she's going to get herself kicked out, or be medicated to the point of catatonia. Anyone with similar experiences? Suggestions?

I honestly wish she'd die. This is just miserable on everyone.

gampiano

Hello, M1,

Bravo for your honesty, I felt the same way when my husband was becoming unmanageable. Because i was caring for him at home, I was greatly relieved when we finally came up with an effective medication plan, which kept him somewhat compliant . What are they recommending at the facility?

I know it would be painful to see your partner in a catatonic state, but, maybe think of it this way. What would your feelings be if she were at home and this behavior was non stop? What if she was your patient and not your partner? What would you recommend?

This is so hard, I know....

Maureen

loveskitties

Have you considered hiring a "companion" for her who can fill in for what you have been doing? Perhaps someone who can create a routine with her would help her with compliance issues. Perhaps starting with just sitting with her and gently encouraging her to at least do meals and some hygine.

Is there any middle ground on the increase of meds?

Waldorf

I would consider this the same as not wanting to eat with other issues involved. In hospice they say not to force feed them. This would be considered being in the final stage of life. Accept the fact that you can no longer control the outcome and make sure you are prepared for the final stage. It is not pleasant.

Jo C.

Dear one, this is a situation with no easy answers and I am so sorry.

If this were your patient to whom you were not related, my guess is that you would assess the physical and psychological state and make the determination that it was far time to add adequate medication to the plan of care. Truly. There will not be the necessity of making her near catatonic - that is existing in imagination. This assessment and prescribing would be best done by a dementia specialist. A GeroPsych specialist would probably serve well. Things cannot stay as they are.

It really is time, M1. With eyes wide open, it appears that is the only realistic and caring option left. One can get that medication intervention in place and then one can also consider adding Palliative Care to the dynamics for additional support. It appears it is probably time to begin to let go and let things move forward.

With that, she will have more peace from the medication as well as the kindly Palliative oversight with extra eyes, ears, hands and support for both of you and the option to use acute care and hospitalization is still there while she is not yet ready for Hospice. Palliative will let you know when she is deemed ready to be transferred to Hospice care. Cannot continue business as usual; "usual" was passed long ago.

She is also suffering and permitting her appropriate and adequate medication will bring her relief as well as bringing you both peace. You have gone the far limit and more. From what you have written, it seems it is time too step over the line of what was wanted and change to providing what is needed.

Very difficult situation; once she is sorted it will also be helpful to yourself and your own healthcare needs which still are with you.

Let us know what you decide and how you are and may it all work out far better than it is right now by staying this unsustainable course.

I will be thinking of you and hoping . . .

J.

Anonymousjpl123

As you know from my posts my moms progression has been fast. Today she refused treatment that would most likely have greatly benefited her, without which this will likely be a more painful journey.

That said, I realize I can’t control this horrible disease. All you can do is focus on keeping your partner safe and comfortable. It’s horrible. But absolutely the right thing to do. Can they kick someone out of MC for refusing care?

i don’t know your partners situation but it seems like there must be some medication that could help ease symptoms without inducing a catatonic state. I’m so sorry this is a terrible situation to be in.

M1

Honestly, even with my physician hat on, it's not clear to me how to proceed. She's on Seroquel and Zoloft, i don't think tweaking doses is going to help this. Benzos like Ativan or Xanax are only going to put her to sleep and increase her fall risk. We'll see what they come up with.

Quilting brings calm

@M1, I wish I had some advice. Both to make things easier for you and because I see the future for my step-dad( if he lives long enough to be in MC- he’s lost weight in the last three months) I can’t get him to cooperate at all. He spends a lot of time in their AL apartment skipping activities and meals. He eats when he is hungry though, and they keep snacks and sandwich fixings in the apartment.

However- he will come out and socialize or go to the dining hall if a female staff member flirts with him and gives him attention. So far the staff doesn’t seem insulted by this. They actually go with it to get him to cooperate

Is there a particular staff member that she either has or could develop camaraderie with? Maybe your partner could become that staff member’s special project?

I also totally understand your last sentence in your original post. I’m having health challenges right now and I’d really like to be able to have some quality/quantity of life expectancy left when my caregiving days end. I wonder if I will get any?

Jgirl57

Sorry M1; I have no advice since we are not “there” yet. I do think reading and re-reading and re-reading Jo C’s response would be beneficial . I hope to remember her words in the near future. You are amazing and so helpful to us ; I wish there was a magic answer for you.

Walter0617

M1, I am having similar issues with my wife. She was placed in a nice MC four days ago after spending two weeks in a geriatric psychiatric facility. It is about an hour from my house, but was the most affordable, being about $2000 per month less than places in the city where I live, plus it was actually nicer than most of them. When I went to see her yesterday all she would talk about was demanding to leave. She had packed up everything in her room and stacked it by the door. She had stripped her bedding and stuffed all kinds of things in laundry baskets, bags, etc. I didn't go back today and am not sure when I will go again. The staff told me it might be helpful to stay away for a few days. We've had 45 wonderful years together and I want to walk alongside her through this difficult time. However, I can't handle going to see her and only talking about her leaving, which isn't an option. She is mid stage 6 and was hospitalized for extreme paranoia. She thought I was beating her and trying to kill her and kept trying to run away. Even though the hospital stay helped, she is still very agitated and somewhat paranoid. I can't go back to the way things were before the hospitalization and I can't deal with her demands to leave the MC. I feel lost in so very many ways.

ButterflyWings

(((M1))) I am so sorry for you both. And for me and my DH. And the rest of us here in this truly awful nightmare called dementia.

For what its worth, my DH is right there with your beloved on the no-bathing, no changing clothes list. And it is a non-issue at our house. He also is on 300 mg of Seroquel daily, for years. 100 crushed, 3x daily keeps him chill and safe, and me sane. But he's far from catatonic.

I know facilities have different routines and expectations for hygiene, but I'm hoping maybe they can relax some of the demands and set her up for more success than failure. That could take several of the items listed off your stress list and seems the compassionate thing to do for both of you -- especially as she progresses to later stages. It really should be more about comfort and peace of mind. Not, was she "compliant" with shower and dressing demands today... (I may be weird in that regard, but it was a fight with my DH and I soon decided it wasn't worth it. He won. I conceded, and we both benefitted).

I'm wondering if they can cut her some slack, and that will give you more peace of mind as well. For example, you might recall my DH has refused to bathe or shower for probably 3 years (except 2x this past summer during a super weird anomaly), we have home health aides and that task is the first to come off the care plan. He's 100% of the time, just a quick wipe-down of the hotspots with every toileting and that's 'it. Plus a periodic quick sponging off of an arm and a leg here or there, followed by lots of lotion whenever and wherever he'll allow it. That's it. He smells better than I do and has zero skin breakdown.

And he definitely is not allowing me to change his clothes every day. Hasn't for 3-4 years. I use a bib-like thingy to keep most drips and spills at bay (we have about a dozen of them or more!) and he lives in sweats, t-shirts and easy pullovers. Sleep and wear. So, daily change of clothing is not on his "care plan" either. Less conflict and fewer items to seem non-compliant on. I imagine it might be harder in a facility to get them to stop expecting things that honestly maybe shouldn't be "mandatory" at some point. I hope they might consider some adjustments at least.

I sure hope and pray you both get some relief. I recall she said she'd rather die than be in a state like this, so I understand how you feel about wishing it was over for her sake as well as yours. You are far from alone in thinking that way. Sending you endless virtual hugs and healing wishes. You have gone through more than your fair share. I sure hope it gets better somehow. Maybe a higher dose of Seroquel will be part of the key.

M1

I completely empathize Walter. I hope she accommodates, it's so hard when all you want to do is help, and you can't. Ours has been a long saga.

ThisLife

Walter, my H was placed 9/1. When I see him, the conversation is about going home and has not diminished. He has packed up once. I go once a week.

M1, my POV is that meds are a kindness for him, as well as me, because he is not in a good mental space. There is not much I or anyone can do to make his life tolerable which is the minimum I wish for him. I do not have your medical knowledge or background, but I hope there are more alternatives than agitated/angry or catatonic.

Sending heart felt hugs and care for all of us going through tough times. I wish us all a bit of peace.

Jeff86

I can only imagine how heartbreaking it is for both of you, M1 and Walter, to have made those difficult decision caregivers make—placement—only to have your LO continuously if unintentionally make you feel bad about placement—however necessary it was. No advice for you other than the obvious—any medications that will diminish your LOs’ extreme discomfort have to be considered—but endless sympathy for your challenges.

Jo C.

With care and understanding M1. I recall when I went through such a period and striving to get things set to a reasonable state only to find out I had to be a "detective," with no idea of what was the right path to take which eventually leads to a high gear dementia specialist.

When it came to me that if we continued the same way with the same approach with the same meds, nothing was going to change and misery would continue. Though much effort needed to be expended at a time when I was exhausted, it had to be back to the drawing board with the professionals and it did make a significant difference.

In this situation, M1; is there any particular reason why the meds are not being revisited with attention that one or both either singly or playing together may be causing some of the dynamics? One failing I had was to contribute negative behaviors to my LO's personality and not zeroing in on the meds contribution to the dynamics. Letting go of that took me quite a bit of time and when I did; there was a difference.

So; if either one of your LOs meds is contributing to the issues; or if the two meds are playing off one another causing much of the upheaval, only way to alleviate that is to have a professional make a thorough assessment along with some changes which is not an easy thing to think of doing considering more changes for necessary adjustment.

With Zoloft, if one looks at only the emotional issues; side effects can include irritability, hostility, agitation, unusual behavior, mood and mental changes, agitation and more . . . these effects do not have to begin immediately, (although they can); sometimes it takes time for the potentials to fulminate.

Couple that with playing against Seroquel which also carries some of the same effects in its kit bag, including irritability, agitation, etc., the two drugs may be doing a troubled tango.

Why not revisit this drug treatment with a good GeroPsych? I know it would be a lot of having to expend effort and time which would not be easy, but thing is; nothing will change unless "something" changes.

Just a curious amount of guessing on my part.

Another thing to take a glimpse at; does your partner really have Alzheimer's Disease OR does she have one of the other dementias which may not respond to meds in the same way as Alz's does? That confirmation would have to be done of course by a dementia specialist; but sadly, this was an unidentified issue with my LO until we got to a very sharp specialist and it made all the difference.

So here I am; throwing things at the wall and hoping something sticks to bring peace unto both of your lives. Probably best to have the drug treatment reassessed under such persistent circumstances.

Hope springs eternal . . .

J.

housefinch

I have no advice. I only want to say how much I always value your posts, your seasoned wisdom, and your perspective as a physician and a wise human being. As a younger physician, I treasure your posts and am so sorry you and your beloved partner are having to endure this. Sending you strength and comfort.

White Crane

Dear M1, I have no answers only heartfelt prayers and virtual hugs. This has been such a long journey for both of you, and I hope you can find a solution that is beneficial for both of you.

Brenda

Dio

M1, it breaks my heart to read about your current situation. At the same time, it resonates with my own lingering fear of what's to come. You've been on this road for so long. I am just into 2 years and it feels like a lifetime. I want this nightmare to end. How will it end? Only with his death. So I can only wish for it to come sooner rather than later. But I must leave it in the hands of the Powers That Be, the same one that determined he should be suffering from the disease this lifetime. We do have a special Dementia Healthcare Directive set up which includes no hand feeding or tube feeding. He's not there yet. Still fluctuates between awareness and complete disengagement from reality. I know what I'd want for myself if it happened to me. Of course, it's illegal in this country. But until our laws change, we continue to suffer in agony. So please do what you can to alleviate any guilt. You've done all you can.

Jo C.

Thinking of you. Seems those of us in healthcare careers are built for, "doing something." When it gets to the point of nothing makes a whit of difference in the dynamics or potential outcome, that is a difficult and alien place to find ourselves.

I am deeply sorry, M1; it may be that since all else has failed over time despite herculean effort and deep caring, this may be part of the process until it phases itself out.

My concern is also for you and hope that you are taking care of you since you are also in the throes of your own health needs. How I wish I had answers . . . .

Let us know how you are.

J.

Joe C.

M1, I have no advice to offer here but I hope you can find something that works. Placement, even when successful, is hard on the caregiver but having the challenges you have faced over the last 18 months must be excruciating. Hang in there my friend.

Denise1847

Hi M1,

I am praying for you and hoping you get resolution to this situation.

ImMaggieMae

M1, you have received some good suggestions here. One more comment and I am not any kind of expert, I only try to find and rely on them. My DH was on Seroquel for about a month, low dose that didn’t work. He was switched to another antipsychotic that was like a miracle drug for him. The black box warnings on all of these drugs caused me concern at first but I read every study I could find and then had a dear friend who is a retired statistician explain the parts I didn’t understand. I agreed with his neurologist who told me that if I wanted him to remain at home, being awake and agitated for 36 hours at a time was not sustainable and that DH was not any happier than I was about what was happening to him. He had excellent results. He takes only the antipsychotic and Memantine , along with melatonin and Gabapentin for neuropathy and leg cramps before bed. The antipsychotic did not make him catatonic. If it had, we would have cut back or discontinued it. It made him personable and cooperative. As the disease progresses he is sleepier at times and I cut back by very small amounts at those times. The dosage for seniors with dementia is a fraction of what a younger person would be taking for other conditions. His doctors give me some leeway in the dosage.

I had an aunt who was a CNA for over 10 years at a nursing facility/MC. She eventually retired on disability due to a couple serious injuries received from patients. She told me about patients who were injured by other patients who became violent. So one can understand why these facilities have to do whatever they can to keep not only themselves, but other patients safe. The idea of medications may be unpopular, but sometimes there aren’t a lot of other choices.

Perhaps for the other issues like bathing and hygiene, hiring a caregiver for a couple days a week could help. They would have a certain amount of time to dedicate just to her and she wouldn’t be arguing with them about taking her home.

jfkoc

How did the meeting go???

Jo C.

Maggie Mae; until you mentioned it, I had forgotten the same sort of experience with my LO. Each person will react to meds differently; reaction and tolerance is up in the air for many.

My LO did not respond much to Seroquel, but when changed to Risperdal, that made a positive difference and was effective. Others have an opposite action to that. It took me awhile to permit the use of an antipsychotic out of fear of reaction; later, my only regret was that I had not given permission to start the med earlier. Learn as we go.

Thinking of you M1 and will be. May the corner soon be turned with peace and grace coming to both of you.

J.

Rocky2

M1,

I'm praying for you and your partner today.

Tom

M1

Thank you Tom and all my dear forum friends. We actually had our first lovely day in quite a while. Several things brought it about: most importantly, finally figured out that the blood thinner they had me taking was causing most of the excruciating back pain (unusual), and having stopped it on Saturday I feel 1000% better. Having to switch drugs not easy, but thank goodness!! Eight weeks of preventable hell is behind me. So i was able to go for a good visit today-as usual when im not there, she had packed up her room again ready to leave, and cried for quite a while (never understands my absences). But then got her distracted with lunch, taking a walk, watching some calm nature videos by ourselves in one of the living rooms. She let me organize her room again (i have this down to a fine art) and she let me leave without much protest. I told her I would be back tomorrow, when in fact it will likely be Wednesday-we are going to be experimenting with the interval here, and with what may work for letting the aides give her showers and not me. Flying by the seat of our pants, but my feeling physically better is going to make all the difference.

Joe C.

Glad to hear of the improvements with your back pain and with your partners care. Hoping things continue to get better.

ButterflyWings

So glad you got relief from that back pain! May many more large and small wins come your way now. You and your LO are due for that, for sure.

Joydean

M1 that’s some good news! Glad you are feeling better and that you and your partner had a good day for a change. God knows you both deserve it! Prayers for you both!