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My Mom is only 76 but has been borderline personality all of her life but managed well, taking care of herself, as she is a very smart lady. Recently, she had been having hallucinations, delirium, and memory loss and needed to be in the hospital. She has been taking oxy for pain Klonapin, and antipsychotics for many many years. It turns out she had a really bad UTI that when cleared up she was almost back to being Mom again. She is incontinent so very susceptible to UTI's. She has been back and forth to several hospitals with relapses with behaviors such as hitting herself, spastic movements, yelling out, being nasty, etc. So needless to say she is like a rollercoaster with being my Mom one day and then all that I have described the next with not remembering what day it is or what I said to her a minute ago. The behaviors are now much improved with medication. Could not get a doctor to say Assisted Living or Memory care would be best. No one wanted to commit or give an accurate diagnosis(most likely vascular dementia) so I put her in Assisted Living with Memory care which is like assisted living but is locked with only 12 residents in a small unit. My mother is high functioning and there are many more residents that are worse off and she is having a hard time finding someone like her. So frustrated and it is only the first week but she calls me 20 times saying she is in hell and that I put her away in a nursing home. I don't want to pull her out too soon but so far she is so unhappy. Any ideas as to how long I should wait and see before I look for another solution? I am riddled with guilt over her unhappiness and not taking her myself. My husband and I are teachers for 25 years with no kids and have been planning an early retirement for years. She is physically healthy for the most part except for Arthritis and Macular Degeneration. My Mom is also low income and I was so happy I found an assisted living that takes Mass Health and her social security. Any thoughts?

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I understand. Unfortunately our parents have to get old. Everyone situation is different. My mom has memory lost and Dimentia. She has poor vision and can not be at home alone. She had 2 strokes last year. She’s on a walker and a wheel chair. She was in a nursing home for a month to get intense rehabilitation. My sisters and I made sure we were up there everyday. I believe if you find a good nursing home and stay visible you will be ok. As far as guilt. It’s always there. I made a choice to take care of my mom. But I too have guilt sometimes.
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Reply to Mahogany
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When she was admitted to the facility, did the admissions personnel evaluate her for placement ( memory care versus assisted living)? Typically, a person requires memory care if they are at risk for wandering (need for locked unit), assistance with feeding, personal care at a level above minimal assistance, medication management/administration, and dependence on the instrumental activities of daily living. (cooking,housekeeping,shopping,laundry). Seniors do experience adjustment difficulties in moving to a facility. The move plus communal living is a lot. Have you spoken with the staff to discuss her care plan? What needs to be considered is her safety as well as her care needs. Please try not to feel guilty about not caring for her yourself. Your recognizing your limitations ahead of time is not a bad thing. After all, you need to consider her, your husband, and yourself in this situation.
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Reply to Peanuts56
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If you are asking this question you know the answer. Assisted living is for people who can live independently with a bit of help. They are free to come and go as they please, run their own lives, and make their decisions. They don't need supervision for behaviors, just someone looking out for their we'll bring and providing help with daily tasks such as meals, laundry, medication, personal care. They provide wellness checks and reminders for mealtimes if needed. If your mom needs more than this
Level of supervision of care she needs a nursing home or memory care.
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Twinkie2125 Mar 24, 2020
Thanks for your response. The interesting thing is this is Assisted living with memory care so it's kind of unique and confusing in terms of what they will do. It is a locked part of the the assisted living facility. They get more supervision but the memory care people run the gamete in terms of the extend of the dementia. It seems to be one step up from a nursing home except you can bring your own bed, etc. to a room. The part about it being locked is tough right now especially with the virus situation as I can not visit her. The other part of the assisted living has a beautiful view of the ocean and they are free to come and go. The confusing part also is that I met some people in the "regular" assisted living part of the facility and they have more mobility issues and need more ATL's then my Mom but my Mom's mind is worse. I think we need more places for mental illness that is like assisted living places that can be quite beautiful and more pleasant. I just can't seem to find one especially for low income and so I have to accept this as the best solution.
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I have been POA for my sister with LBD. many symptoms you described. hallucinations, bouts of agitation, poor memory, she also has Parkinson's like symptoms, incontinent, stiff body poor coordination. Scans of several types done when she was hospitalized for agitation issue. Finally decided LBD. My dad diagnosed with Parkinson's has many of the same issues with dementia recently added. He was hospitalize several times recently for dehydration, UTI, blood infection high BP confusion got much much worse. Some reading on the topic showed hospital delirium is real. Once dad got home a day or so he was back to his normal self.

I would do your homework in your spare time....check other places, tour, and keep checking unless until you find something that feels better. Sis has moved 4 times in the past year. Recent move last week I pray will be the last one. So far new people have been very good keeping me in the loop. Helping sis to use the phone so we could talk as they are on lock down.

Last facility screwed up her depression med list and made the med change and transition to new place absolutely horrible for sis she cried non stop almost the whole first day.

Each time we moved sis out of necessity for higher level of care she also had more and more problems adapting all over again to new system, new faces etc. Most places will require a 30 day notice to exit. and then need to plan to move at the end of the notice period. Has not really been easy for me since the hunt for places that would accept sis were limited in the first place, thousands more than sis got from retirement funds made it even harder. nearly 6 months later we got in to what I hope will be a decent place. Long wait list at the good places were impossible to predict when and if we would ever be offered a spot. Then toss in the nasty note from the nurse at the last place entered into sis chart notes, that prospective places undoubtedly saw when new assessment was done to size up sis as a good fit for placement.

Then, I tried visiting sis when she first began anger issue. thinking I could smooth it over for her, distract, have fun times. which we did, but did not change things or stop decline. Maybe made it worse as I always had to say goodbye and she would not remember or know when I was coming back. I even started calling before I left the house to say I am on the way. By the time I got there she forgot I was coming or why.

Memory care seems to have slightly different definition at the places I toured. Some programs seemed more engaging than others. Yes a wide range of residents and abilities. My sister could not make friends at any of the places she was at-she was having a hard time adapting in the first place-coping with her limitations physically and mentally it was tough to see let alone how she was feeling on the inside. she wanted a friend-i tried to be that too but it was never enough to make her genuinely happy again. I tried to be her everything. I wish I could have done more. Or maybe found a good place the first move with all levels of care and not needing to move again and again. For now sis knows I love and care about her she barely knows who I am.
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Twinkie2125 Mar 24, 2020
I am so sorry about your sister and what you have been going through. You are an unbelievable sister and fingers crossed on this new place as being "the one". One thing I had to realize is that no matter where my Mom is she will never be happy and will always say "the people are mean here" "they don't like me" I know she is afraid and that is why she says these things. I do realize also that I should not move her until she has given it a decent chance to acclimate. She just recently slapped a nurse and I got a call from the executive director. At first, I was a bit taken a back since this is "memory care" after all and I assumed this is not their first rodeo. Thank goodness she had a UTI and needed an antibiotic so should wouldn't act so agitated. Otherwise I think they were going to suggest that we look into another option. Hang in there and thanks again for being to kind
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Mom is only 76...please think of yourselves too. It sounds like she is having serious mental health issues, she definitely needs PROFESSIONAL help on a full time basis. Don't be a martyr, you both have a right to live your own adult lives as well. You have worked hard for this. She will adjust, it is difficult now, but things will improve when she can make friends. It will get better. Keep the faith.
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Twinkie2125 Mar 24, 2020
Thank you! It is quite a blessing to be out of school due to the virus on the one hand I can spend the mental energy with Mom, make calls, and take her to her doctors appointments. My students aren't that upset either as we work together online. My Mom will have to learn to adapt to her new environment and I will have to be here for support.
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If your mother has been diagnosed as having dementia and also suffers from borderline personality, she has not been in her present placement nearly long enough for you to judge whether she will adjust or not.

I absolutely agree with the previous poster. Stop answering the phone. Don’t even consider moving her for at least three months, and don’t base your decision on how unhappy she says she is, OR how guilty you feel.

Your job is to find a place where she will be safe, receives nice meals, is helped into a structured appropriate day to day life, and is respected as a human being. You have done that.

Unless you wish to give your retirement to her before it begins, don’t consider inviting her to live with you. She has multiple complex diagnoses, and she needs 24/7/365 care, given by professionals who are trained to provide just that.

Your empathy is quite wonderful, and you will clearly never abandon her. But do see what happens in the next several months, and let the pros do their jobs.
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Twinkie2125 Mar 24, 2020
Thank you for your kind words. I know she wants to live with me and know she can't but when she cries it tears me apart. I will be reminded when I read your post that I can't respond to her cries to "get me out of here" "The people here are not nice", "they hit the patients", "it's not what you think it is"especially difficult are the restrictions we all have for visiting these places. I guess I am a controlling person and remain skeptical of how she is really being treated. If maybe she is telling the truth but in my heart I know she lies. If this virus ever goes away I can check it out myself as I have never really been there while she has been there due to her moving in at this difficult time.
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Twinkie, ditto to what Cali summed up so well. For some things there are just no good solutions. You cannot take her into your home and do that to your husband -- and yourself! I'm sorry you mom has struggled with her BPD and yes, it is a huge adjustment for her. But there are no other realistic, logical solutions. My MIL is in LTC for short-term memory issues and self-imposed immobility (she refused to get out of bed and now she's lost all her muscle tone and can't do it). We transitioned her there in 2016 and not a week goes by that I don't have a pang of guilt and sadness. But there is no way for us to care for her ourselves. In your mom's case, and after you've given her at least 2 weeks to acclimate (limit calls to her) she can choose to make the best of her situation. If you have any thoughts about taking her out and into your home please read the 1000+ posts under Caregiver Burnout on this forum written by loving, well-meaning, guilt-ridden children who made decisions with their hearts and not their minds. For some it cost them their health. For others the death rate for caregivers preceding their LOs in death increases by about 30+%. Her care challenges will get more intense as time goes on. She will have more socialization where she's at. She's safe, will be well fed, receive the proper medical attention. You can provide excellent advocacy for her by having a good relationship with the admin office, the staff, and frequent visits. That's more than what many elders get. You are an awesome daughter and probs an awesome wife, and you need to protect that. Blessings to you!
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Reply to Geaton777
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Thank you! I really do know what you are saying is true and it is consuming me and I need to stop answering the phone. I guess I am empathizing to the point of comparing how I would feel if I were her locked in a unit and I can't just go out when I please.
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What other solution is there? It can take quite a while for someone to acclimate to LTC, and some people never do. I say leave her where she is until the AL says she needs a higher level of care. And if you are answering every time she calls, stop doing that. Let her go to voicemail. She is in a safe environment and she’s being taken care so you have no reason to feel guilty. As is often said here, guilt is what you feel when you have done something wrong. You aren’t responsible for your mothers happiness and I hate to break it to ya but she won’t be happy no matter where she is. Reassure yourself that she’s safe and she’s being taken care of and continue with your retirement plans.
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