Feeling Beaten Down by Extremely Stubborn Parent in MC

Yogini72

Hi All, I'm looking for some advice and/or guidance.  My mother, who has dementia (Stage 5), is extremely stubborn and I'm feeling beaten down by trying to find the correct care placement for her.  My dad died a few years ago and I am an only child (daughter) with both durable and medical POA.  Mom was diagnosed with dementia in 2020 and has been slowly declining neurologically; physically she is in excellent health.  She falls into this gray area of too physically functional for most MC communities but not able to live safely in AL because of her short-term memory loss and exit-seeking behavior.

After a months-long search for long-term care earlier this year and trying to involve her in the process (she would not agree to any options, including in-home care), I moved her to a beautiful Assisted Living community in early July.  Since she did not actually agree to the move, she packed her bags EVERY DAY for 3 months, until she had a temper-tantrum and threatened to kill herself if she had to live there for the rest of her life.  That led to a 3-day psych hold.  Long story short, although the AL community did everything they could to accommodate her needs and kept her busy with activities, etc. we decided that it was best to find a MC community to better address her dementia.

So 10 days ago, we moved her to a Memory Care community about 30 minutes away because that was the best one we could find on short notice that had a private room for her.  No surprise, she hates it even more than the AL community and refuses to unpack her bags or arrange her furniture.  I've tried visiting her several times and each visit is worse than the last.  Today she spent the whole visit crying and begging me to take her home.  The staff had to physically separate us when I left.  No matter how many times I try to explain to her why she is there or tell her a therapeutic fib, she argues with me and tells me she would be happier at home (she was lonely, isolated, and miserable at home).  I know you can't reason with a dementia patient and she doesn't remember our conversations or my visits after I leave, but I don't know what to say any more.  If she were to go home, my family would have to move in with her (try doing that quickly, ha!) and due to her control issues and narcissistic personality (both present before dementia), it would likely be even more of a mess than now and I don't want to expose my children to that.

Her current doctors in MC has evaluated her meds and elected not to change them for now.  I've talked to the MC staff and asked if she could participate in the community's AL activities.  Right now she is in a small unit with several folks that are wheelchair bound in the later stages of dementia and she is someone who needs to stay active (at least for now).  I understand why she is feeling cooped up and out of place.  I thought frequent visits would help her settle in but I think it might be making it worse?  All she wants to do is sit in her room and talk about leaving, etc. and if I try to change the subject (or venue) she accuses me of being insensitive to her feelings and her needs.  It's brutal.  I'm feeling so beaten down by the events of the last few months.  I'm second-guessing every decision, feeling like there are no answers or solutions to finding the right care plan for my mom, who falls between traditional AL and MC populations.

Curious if any folks have dealt with a similar situation?  Or have advice on how to deal with a VERY stubborn and unhappy LO with dementia in MC?  Thank you!

Quilting brings calm

I’ve seen a lot of posts from people placing  a loved one in MC.  Many of them are told not to visit for two weeks so that the person can adjust to the facility.  I suggest you do not visit and do not call her for several days.  If you want to check on her, call the nurse.  Not only will this  allow her to get to know people, it will give you a mental break. Veg out. Watch a movie, read a book. 

If you flip over to the spouse and partner forum, there are several posters that have recently loved their spouse to MC and you can read their stories. 

terei

My mother was similar.  You need to detach a bit.  Your mother is not going to be happy no matter where she is at this point.  No matter what you say or do will not make a difference in her behavior.   

It has been only ten days.     According  to you, your visits agitate her.  Keep up with her condition + behavior by talking to staff once a day.   They have dealt with this before, she is not unique.  If you cannot stay away, I suggest you somehow go to the facility + try to observe her without her knowing you are there.

Quit trying to explain anything.  When my mother will start in, I would tell her I knew it was a crappy deal, but there were no other alternatives.  If she persisted for more than a couple minutes, I would leave.  At this point, your visits are only serving to upset you both.  Let the staff work with her + encourage them to get her involved in her new community.

By no means should you consider having someone with this personality in your home.  IMO everyone in your household would suffer + she would be no more satisfied with her situation than she is now.   Take some deep breaths +  try not to think about this 24/7...I know it’s hard but she will adjust over time on her own. Keep away for now...everyone will be much happier

BassetHoundAnn

Yogini72 wrote:

Hi All, I'm looking for some advice and/or guidance.  My mother, who has dementia (Stage 5), is extremely stubborn and I'm feeling beaten down by trying to find the correct care placement for her.  My dad died a few years ago and I am an only child (daughter) with both durable and medical POA.  Mom was diagnosed with dementia in 2020 and has been slowly declining neurologically; physically she is in excellent health.  She falls into this gray area of too physically functional for most MC communities but not able to live safely in AL because of her short-term memory loss and exit-seeking behavior.

This describes my mom. Far more physically active and healthy than most people in memory care but memory problems, incontinence and exit-seeking makes her better suited for memory care. I'm an only child too. I could have written your post.  

After a months-long search for long-term care earlier this year and trying to involve her in the process (she would not agree to any options, including in-home care), I moved her to a beautiful Assisted Living community in early July.  Since she did not actually agree to the move, she packed her bags EVERY DAY for 3 months, until she had a temper-tantrum and threatened to kill herself if she had to live there for the rest of her life.  That led to a 3-day psych hold.  Long story short, although the AL community did everything they could to accommodate her needs and kept her busy with activities, etc. we decided that it was best to find a MC community to better address her dementia.

Yeah, been there, done that. I moved her to a lovely quasi-assisted living community in summer, 2020. She picked out the apartment and agreed to move there, although she had/has no memory of doing so. Every day for the next six months she packed her bags, threatened suicide and had horrible temper tantrums each time I appeared. Which was every day because I was trying to keep an eye on her and she was after all my mom. It was horrible. Every day as I drove through the lovely countryside to reach her lovely apartment I deeply dreaded the visit, saying a prayer "Please god help me because I don't think I can endure this much longer." Next stop memory care...

So 10 days ago, we moved her to a Memory Care community about 30 minutes away because that was the best one we could find on short notice that had a private room for her.  No surprise, she hates it even more than the AL community and refuses to unpack her bags or arrange her furniture.  I've tried visiting her several times and each visit is worse than the last.  Today she spent the whole visit crying and begging me to take her home.  The staff had to physically separate us when I left.  No matter how many times I try to explain to her why she is there or tell her a therapeutic fib, she argues with me and tells me she would be happier at home (she was lonely, isolated, and miserable at home).  I know you can't reason with a dementia patient and she doesn't remember our conversations or my visits after I leave, but I don't know what to say any more. 

We moved my mom to a memory care three weeks ago. I'm going through the same rough spell that you are with your mom. My presence triggers the tantrums and meltdowns. I would stay away, as is generally advised, but this MC is poorly staffed--as are all the MCs in our community at present. I visit her every evening to make sure she's getting the care she needs, to make sure she's being escorted to meals (she wasn't for a spell and wasn't eating), and to talk to the staff. When she starts on the "I have to go home" spiel and meltdowns I've grown pretty adept at diverting her, although they're still upsetting. I downloaded to my tablet a bunch of country CDs she likes, and bought a wifi speaker I can keep in my purse. So we listen to music, sing, sometimes dance. We have snacks, drink "wine" (fruit juice boxes poured into wine glasses). We play cards (sort of). We phone relatives and old neighbors. 

At this particular MC most residents appear to be in Stage 7, in wheelchairs, catatonic. I suspect my mom is in Stage 6. She's extremely talkative and very high energy. She complains that all the other residents are "too far gone" to engage in conversation with her, although frankly she's not adept at conversation herself besides chattering non-stop. During the day the aids walk her up and down the hall to try to burn off her energy and seat her in the nursing office and let her chatter away, telling everyone stories about things that never happened to her. There are daily activities in the AL portion of the building but my mom is not capable of engaging in those. 

I've been told that the population of a MC is constantly changing as residents move in and out and die, so who knows maybe residents that are a little more conversant and active than the current ones may move in eventually. 

If she were to go home, my family would have to move in with her (try doing that quickly, ha!) and due to her control issues and narcissistic personality (both present before dementia), it would likely be even more of a mess than now and I don't want to expose my children to that.

Good heavens, don't even consider that! My mom was living with us at several points in this odyssey as we searched for AL and MC residences for her and it was a living hell. It convinced us that we are not capable of caring for her ourselves, even if we were to hire aids to help us. She really needs the care of staff in a dedicated memory facility. Alzheimer's has made her stubborn-ness and control issues far worse than they were even years ago. She also has issues with incontinence, and is slowly losing the ability to walks, problems for which she needs 24-hour aids. I suspect that will be the path for your mom too.  

Her current doctors in MC has evaluated her meds and elected not to change them for now.  I've talked to the MC staff and asked if she could participate in the community's AL activities.  Right now she is in a small unit with several folks that are wheelchair bound in the later stages of dementia and she is someone who needs to stay active (at least for now).  I understand why she is feeling cooped up and out of place.  I thought frequent visits would help her settle in but I think it might be making it worse?  All she wants to do is sit in her room and talk about leaving, etc. and if I try to change the subject (or venue) she accuses me of being insensitive to her feelings and her needs.  It's brutal.  I'm feeling so beaten down by the events of the last few months.  I'm second-guessing every decision, feeling like there are no answers or solutions to finding the right care plan for my mom, who falls between traditional AL and MC populations.

It is emotionally brutal, no question. Many evenings I lie awake racked by guilt and sadness, wondering whether I'm doing the best I can for my mom, even though she has no comprehension of all that I have gone through for her. You must remind yourself that you are making the best decisions for her care--and also for you and your family. You must make yourself and your family the priority here. Don't allow your mother derail your life and happiness, and control you from her state of mental impairment.

Good luck from another beaten-down daughter! You're doing a wonderful job taking care of her, don't let her convince you otherwise.  

Yogini72

Thank you, @ Quilting bring calm for your advice.  I checked out the Spouse's board and found some helpful information there as well.

Yogini72

Thank you, @terei for your advice.  I appreciate your reinforcement of things that get forgotten when your parent lays a massive guilt trip on you!  Today is a new day, and thankfully it is for my mom too.

Yogini72

Thank you, @BassettHoundAnn.  It is comforting to know someone is going through almost the same thing at the same time.  I hope you will continue to post about your mom's journey.  It is not easy being a daughter or a sole care-giver.  I related to everything you said.  Thank you for bringing me back to reality (having us all live together is totally unrealistic!) and for being a supportive voice in choosing myself and my family's happiness over hers.  I hope the stress of your mom's journey in MC eases as well.  It sounds like you are doing a good job figuring out how to navigate this challenging and stressful situation.

King Boo

So, this goes a lot easier for the adult child decision maker when:

• we realize this is not something we can expect them to be happy about
• that this is not something we can expect them to understand, or accept and therefore
• this is not something we should try to explain to them
• that sometimes we need to stay away for a while
• that malcontent and complaining is a hallmark  of Stage 5 dementia
• that the best answer is the one that brings the most comfort - even if it is not true
• that Mom really does belong in MC at Stage 5-don't torment yourself with the 'she's so high functioning" mantra, which we as family often incorrectly insist. 

But, after a reasonable amount of time,if she gets agitated, or depressed or is contantly anxious- I would not rest until she sees a geriatric psychiatrist MD.  Anti anxiety medications can be a game changer for their quality of life and make daily care easier.  - They are not in the wheelhouse of a GP or neurologist and I found these practicioners often underdosed or did not use an appropriate med.

The meds the geriatric psychiatrist prescribed vastly improved my LO's days, quality of life and ease of care.

It is painful.  We all wish things could go smoothly and we could do 'happy' for our parents.  Sometimes, there is only 'best as can be.'   but there will still be bright spots in the future.

Good luck.  

Michael Ellenbogen

II am still not sure why people  are so surprised  when  they don't want to be there. Why is any one surprised?  How would  love for someone  to lock you up.

BassetHoundAnn

Michael Ellenbogen wrote:

II am still not sure why people  are so surprised  when  they don't want to be there. Why is any one surprised?  How would  love for someone  to lock you up.

That's a very good point Michael and something I think about often. But it's also a hallmark of the disease that the sufferer is not going to be happy anywhere, even in a lovely setting with total freedom. 

When we moved my mom to our house she was perpetually angry, threatening suicide, melting down, lashing out. We have a lovely house (I think). We have gardens, a wooded lot, it is quiet, she had her own room. We paid attention to her and gave her love 24/7 and tried to incorporate her in family activities every day doing things she loves, like cooking. Didn't help, didn't work. She was perpetually mad as all get-out. All we heard was how we were terrible people and how she was unhappy. 

When we moved her to a senior apartment she was even worse. My husband and I joked that we would like to move there ourselves and give her our house. It was a lovely place with wrap-around balconies I filled with flowers, the apartment contained all her prized possessions, she had meals, help, kind and sweet neighbors. There were activities, movies at night, gardens to explore and enjoy, lots of things to do. She was by no means locked up. We visited her every day. She hated it all with a passion. 

And now the memory care. Yes she is locked up. She is a bit more resigned. She has definitely mellowed. She is not the angry spitfire she was at our house or at the senior community. And yes personally I would hate to be locked up like this. But she is not going to be happy anywhere, anyplace, that is the nature of the disease. It is our responsibility as caregivers to make our loved ones safe and get them the care they need. 

Dr. Natalie at Dementia Careblazers offers this video which I think makes a valuable point: 

https://www.youtube.com/watch?v=k870clroJgU

Don't ever judge your caregiving abilities on whether your loved one claims to be happy. 

Michael Ellenbogen

Wile you are thinking logically the person with dementia is not. The person with dementia needs the Same environment and ties of day. Anything different creates more issues and agitations. The more times they are moved it will compound the issues. We lose our memory and our comfort sone of what we can remember. You rip us out of that environment and you have taken the last things we can still know and still do.

 

Don’t think logical as we are impacted by the smallest changes. There is so much rage in these folks for ther own los of skills and all of it compounds. Just imagin whta you would feel like if you go from an adult to a child agian and you know its happening and have no controll. 

King Boo

Yogini,

Care needs drive the decision making.  The move was not avoidable, and neither is the adjustment period.

Things will get better.  Hang in there.

DawnOfANewDay

"How would you love someone to lock you up."

I want my child to place me in a facility that is appropriate for my cognition when/if the time comes.  I don't want his life to be taking care of his parents in the way I have to take care of my mother. Never.  So, YES, I want my son to "lock me up."  

I have had this discusssion multiple times with my adult child.  

Yogini, hang in there.  You are doing the best you can for your LO and they are safe.  Hopefully, tomorrow will be better.

JenWiz

Hi Yogini! 

I’m in the exact same situation except it’s my dad. He’s been in MC since March 15, 2021 and hasn’t been happy, but the agitation stage just started about 2 months ago and exploded last week when I took him out for some appointments, and he told me the whole time HE ISN’T GOING BACK THERE. I explained again to him that he has Alz and he cannot live alone. But he is still just enough there to know he wants to be at home even though he can barely communicate and cannot take care of himself at all. It was a huge spectacle when I took him back to MC,  and the next couple days he got aggressive with the employees @ MC, so he is now spending 7-14 days at a behavioral hospital so they can help him and figure out appropriate meds. My sister and I feel incredibly guilty and sick to our stomach about this. We both have kids and cannot juggle both him and them so we found a great MC home to keep him safe. 

We both visit him weekly and we dread going b/c he complains the whole time he wants to go home. 

I’m praying some meds help him to calm down and I’m headed to my first Alz Association support group meeting next Tuesday to help process these emotions and hopefully get tips on how to navigate this stage of ALZ. 

I just wanted to let you know you aren’t alone. 

Yogini72

Thank you, @ King Boo.  I've printed out your bullet points and put them in a place I can see them every day!  Yesterday I requested a meds review with the MC's geriatric psychiatrist to address my mom's extreme agitation.  I hope a different med will improve her quality of life.  Thank you for your advice and support!

Yogini72

Hi JenWiz!  It sounds like we are in very similar situations right now.  I'm in the process of getting a geriatric psych on board to evaluate my mom's anti-anxiety meds because what she is taking now isn't working and her anxiety is through the roof.  However, with the combination of her depression I would also not be surprised if there is a stay at a behavioral health hospital in her future.  I've been sick to my stomach for weeks with everything that's been going on.  I've decided to have limited contact with my mom right now because all she does is beg me to take her home and it puts me right back on the roller coaster that I've been trying to get off of.  I've also signed up for the Alz Zoom meeting in our area, to help me navigate this extremely challenging phase of the disease.  Happy to share tips as I get them!  Thank you for your support and know that you have mine as well!

mommyandme (m&m)

I can see one good thing that’s come to light now that I’m all too familiar with this disease because of my LO:

I’ve had the discussion with my husband and children on what my wishes are if I am ever diagnosed with dementia.  I want to be placed in a facility for my care.  Not because my caregiving experience is horrible but because I don’t want their lives put on hold completely.  Obviously it’s a huge burden even when our LOs are placed but hopefully my family would have some more opportunities for peace and joy.  

I’m kinda ignorant to the realities of placement but I assume. 

Spina21

Thank you for posting this. I feel that I am hearing my own story, having transferred my mom LO with ALZ (hers is also compounded by alcoholic dementia) from the hospital to MC just this morning. She had a drunken slip and fall at home and ended up in the ER 3 weeks ago, and was just released today to a very nice MC near my home. I just went to visit after setting up her apartment with all of her things, photos and personal items and she was extremely agitated, demanding to go home (although at this point she could not even tell you where home is). I feel terrible.

I am the only child and my father is currently in hospice care, so I am also dealing with that and trying to spend the time I have left with him. Him leaving home and going to the hospital was the last straw for my mom living alone, and she had spiraled downward not only with her ALZ but also with a wine drinking habit that had become extremely dangerous. The night she went to the ER she had left the building at 2 AM in her nightgown aiming to go to the wine shop. It was totally unsafe and unsustainable, which I am trying to remember now that I have her somewhere secure that she hates. She had rejected her diagnosis or any treatment for ALZ or Alcoholism, so here we are.

Placing her in MC 15 minutes from my home seems like the safest option for her and the sanest option for me. She barely remembers me or my dad, and I cannot imagine her being home. When I left today she was very angry and I have decided to detach and let the professionals help her adjust along with a hired caregiver that I will have go there every day from 3-8 (sundown time, when she gets even more agitated). I will try to facetime daily and resume visits when she settles in.

I believe you are doing the best you can as am I. I do not have the mental, time or family resources to drop everything and become her FT caregiver, and the truth is I also do not want to. I have my own family, small children and a demanding and fulfilling career. My mother would have never wanted me to give over everything for her, but with her current mental state she only feels negativity, anger and fear. I am working with her Dr. to find the right prescription for her to manage anxiety, I think that will help a lot.

I am grateful for this community as I navigate these waters, we need each other!

MN Chickadee

@ King Boo - I had never stopped to think about it until now, but malcontent and complaining were SUCH a hallmark of stage 5. It's so odd how each stage is so very different and yet brings such enormous challenges.

Love&Light

I hear you and want you to know that you're not alone. My father is in MC and a year later is still packing his bags to leave all.the.time.

Hang in there. You are doing the very best that you can, and your parent would be so proud of you if they were in their right mind.

Yogini72

Hi @ mommmy&me, Yes, going through this experience (and I'm only 3 years in) it is so true that the difficult end of life discussions are critical to have before a death or long-term illness is diagnosed.  It is an act of love to not leave these decisions for your children without some guidance!

Yogini72

Thank you, @love&light!  I keep thinking I'll feel better once she "settles in" but the reality is that may never happen.  Figuring out how to navigate this without ever expecting that she'll change her behavior, because she can't, is the better course.  Thank you for the support!

King Boo

@MN Chickadee-  so true.  Stage 5 about did me in.  I think Stage 5 becomes the crisis point for many family members - because by this point, they are so impaired they are teetering on the edge of disaster.  When all this realization comes crashing down at once on decision makers, it is truly terrifying.

And, there is still just enough occasional moments when the old them glimpses through, to make us doubt ourselves - unless we are strong, or fully understand the disease, which few are gifted with, unless they have done this journey before.

Stage 5 was by far the most difficult for me.  But none of it was easy.

Camblueanalyst

Thank you for your post! This is my first night reading the message boards and I am so glad I came on! I am in a very similar situation and having much of the same anxiety and guilt!  I moved my mom into MC near my home two months ago (mid-August 2021) and it has been quite a ride.  She moved from her home of 40+ years in the SF Bay Area to Southern California and has had a difficult time adjusting.  I completely understand why (like most people, my mom didn't want to go to "an old folks home") but it is heartbreaking, nonetheless. The MC is very nice, well-staffed with kind caregivers, lots of activities and natural light. None of that matters.  She hates it and the people who live there.

I am there almost every day and she constantly tells me that she "can't handle it anymore" and that she "needs to get out of here".  She is miserable most of the time when she is in MC but in great spirits when she is with me.  It is gut-wrenching for me when my mom asks me "what did I do to deserve this", "why are you mad at me?" (thinking I must be mad at her for bringing her here).  I tell her she is safe here and I can't keep her safe anywhere else. Her voice quivers and she is so sincere when she shares her heart and how miserable she is.  I want to bring her home to live with us.  I realize that is not practical.  We would need to add on to our house and have a caregiver for most of the day (unlike your dad, my mom is happy and thankful to be with us). She is in stage 6, so I don't know how long she would be able to live with us, even if we did add a room or two for her/caregiver.

I'm with you, I don't know what to do.  I don't have any answers for you but take solace that there are others in the same situation.  Again, thanks for sharing as it has helped me too!

bozowing

I am there with you both  with my super stubborn dad.  I just haven't gotten him in a MC yet.  He is verbally abusive and swears he'll do harm if we move him, afraid for the staff.  The mental anguish is a killer and I too am at the point of it's him or me.

Yogini72

Hi @camblueanalyst and @bozowing, I completely identify with first, the feeling of "it's them or me" and then the feelings of guilt that follow placing your LO in MC.  This message board has been a great source of information, support and strength.

I also highly recommend the "Experiences in Caregiving; Stories & Support for Caregivers" podcast, which is put out by the Alzheimer's Association San Diego/Imperial Chapter.  They cover a wide range of topics, and the three episodes I've listed to so far have really helped me to understand the common experiences of dementia and to put some of my mom's behavior in perspective.

The "other" one

I had a similar experience with my mother being unable or unwilling to settle in to her new MC home.  One of the older nurses told me that eventually the other residents and the staff become their new "people", and family, although still important, become less a focus for them.  I am also the only (remaining) child and it was tortuous to visit and have to leave her there where she was clearly not happy, but not visiting didn't seem right either.  Covid and visiting restrictions happened, and voila- she made friends and was far more at home without me visiting every day.  I also attributed the change to new anxiety meds and the progression of her dementia. When I was able to visit more regularly, it was much easier for a while.  But, strangely, in the last few weeks, she has begun again to be restless and agitated and assuming I've come to take her home.  I am going to have to space out my visits for my own mental health and maybe for her also.   Perhaps the suggestion of giving your LO some space and time is the right move.  Can she talk on the phone?  At first that was a good choice for connecting with my mom, and I felt I was at least doing something.  It is so hard, and it's worse when it's all on you.

NatA77

I read your post and I feel like I could have wrote it myself.  My mom however hasn't gotten that far yet - into a AL or MC facility.  My question to those who are dealing with this type of person is how did you even get them into the facility in the first place when they are refusing to believe anything is even wrong with them.  We've hired the outside consultants to evaluate mom, I've spoken with her doctor and neurologist therapist and every one of them says we don't have the right to place her in a home legally.  We have all other things in place POA of finances, and medical directive but not POA over her.  In our state I'm being told we can either call the county on her, take her to court or wait for something bad to happen to her at home and then have a doctor tell her she can't go back home.  My mom is now in the middle stages of dementia and everyday there is some crisis that doesn't exist because its all in her mind. We are at our wits end.  Any advice you would have would be very helpful.