Mother Transitioning to Assisted Living/Memory Care

KatieN

Like so many others, I am new here.  I've seen some of my own story in most posts I've read over the last few hours and am hoping to get some perspective from some of the many kind people on here who have been going through this transition.  

My mother has been in a retirement community with progressive care available for about 15 years.  She and my step-father moved there together and signed a contract that included all of the care they would need for the rest of their lives for the same monthly fee - a contract that is no longer offered at this retirement community. The community had a very well-known and respected memory care facility associated with it and my step-father ended up living there for a few years before his death in 2014.  My sister and I realized my mother would need to be going that route a few years ago, but she was still able to live on her own up until the spring of last year.  At that point, she could no longer drive and was not eating right or remembering to take her medications properly.  This coincided with the beginning of the pandemic.  When we found out they were locking down her community, my sister took my mother to live in her house.  My sister does not have a 9-5 job, but has many obligations.  She was able to care for my mother at that time.

In August, my mother had either a stroke related event or a heart related event, no one seems certain which.  She lost consciousness for a short time.  My sister called 911 and my mother was taken to the hospital where she stayed for about a week. When she was discharged, it was determined that she would go to the health center at the retirement community where she lives.  While she was at the health center, we found out that the association with the memory care facility had been terminated during the summer.  The retirement community had been working on a memory care treatment plan of some sort when the pandemic hit and that had since been put on hold. My mother, sister and I have not always been thrilled with the responsiveness of the staff at the retirement community (and that may be an understatement). During my mother's stay with the health center, we were not impressed.  We ended up hiring an agency to have home aides come stay with my mom 24/7 in her home once she was discharged and one of us would visit every day.  Some of these aides were great and others not so much.  Eventually, one of them gave her COVID.  When we realized she likely had it, my sister and I packed up her things and moved her back to my sister's house, where she stayed for about a week until having another event where she lost consciousness.  My sister again called 911 and my mother went back to the hospital for a few weeks.  She was again discharged to the health center at the retirement community.  Since then, she has been to the hospital twice after two more similar events.  She was diagnosed with a UTI at the hospital and eventually given IV antibiotics to cure it.  She is now back at the health center and we can't visit because of COVID protocols.  We have been able to have weekly ZOOM meetings with her for the last 3 weeks and those have been getting better each week.  She seems to be interacting with the staff and residents a lot better and has been gaining back some weight that she lost over the last few months.  They have also gotten her walking with a walker and mobile in her wheelchair when she isn't up to walking.  

After we found out that memory care wasn't really a thing anymore at her retirement community, my sister and I started researching memory care facilities and found one that her doctor of 20+ years and several others highly recommend.  We really like the staff and they let my mother come take a tour and have lunch over the summer.  She was not a fan.  But I think that is expected.  During the time she had the home aides, she was not being engaged at all.  Over the last few weeks, she has seemed to be getting more engaged where she is, healthier, happier and even more lucid.  Today she called my sister to tell her about the man in the room next to her who was beating his wife.  She has had other delusions in the past about soldiers coming in and storming the place and also about me being held against my will by someone there. My mother hung up on my sister after getting upset and crying because my sister was explaining she couldn't come pick her up or visit because of COVID.  We tried calling right after and couldn't get anyone to answer the phone.  They eventually called back and explained that there was a fire alarm test and snow plows that were very loud outside this morning and that could have caused her agitation today.  BTW, we have taken her cell phone so that she can't call constantly, but gets help from staff to call us when she needs to.  Her calls are sometimes frequent and sometimes not. One more hurdle we are dealing with is that my mother is native to Norway and moved to the US after marrying my father in her late 20's.  She now frequently reverts to speaking Norweigan when agitated or tired. Unfortunately, my sister and I don't speak the language and have had limited success with translator apps.  We are concerned that caregivers might not understand that they should keep talking to her in English and she will understand even if she isn't responding in English. 

  If you've read this far, thank you! I'm getting to my questions, but wanted to provide as much background as possible.  

At the care conference we had last week, we were told that my mother's physical and occupational therapy benefits have plateaued and that it is time for her to "go home".  My sister and I pointed out that she is unable to live on her own at this point and it was determined that she would be transferred to assisted living level, but stay in the hospital type room where she has been for the last few weeks.  My sister and I are trying to decide whether to keep her where she is - she is becoming more comfortable and familiar with the place, she has friends in the community who will soon be able to visit because of vaccination, and her care is covered for the rest of her life for the hefty monthly payment she makes.  Alternatively, we could move her to the other facility where we liked the staff, who seem more responsive and who have active memory care treatment and where they actively try to engage the residents on a daily basis, but where her medical costs are not covered in full for the lower monthly fee.  Luckily, the financial aspect is not a major concern for us, but it is still a concern. I am so grateful that it does not have to be the thing that guides our decision.  My heart goes out to all those who have that added stress when dealing with all these other things, too.  Any advice about pros and cons from those who have gone before would be greatly appreciated. 

My second question is about how much to tell my mother.  With the decision made that she cannot go back home, my sister and I need to pack up her 2 story, 3 bedroom condo in about a month.  We are worried, since she is having more lucid days recently, about her feelings about us "taking her stuff".  She is very territorial and frequently thinks everyone is taking her things.  The "normal" paranoia associated with dementia.  So we are wondering if we should have a conversation about giving away, selling, donating her things or if it's too late for that. Any thoughts or advice about how to approach this are greatly appreciated. 

Thank you again for reading this book I wrote and for any guidance offered.  

aod326

Hi Katie. It sounds like you and your sister are doing a great job of looking after your mother. It must be worrying that she has had several hospital stays recently. From a practical point of view, it sounds as if her current community will not be able to support her as her dementia progresses, in which case she will need to move at some point anyway. One thought is that moving now, while she still has the ability to make friends, and while the staff can get to see the "real" her, will be helpful. As you've experienced, the extra interaction and activities are likely to boost her current abilities.

I would not have a discussion about packing up her place. Make sure you keep handy any items she'd like to see, but otherwise pack away and/or donate. As she won't ever be coming home, she won't know. That sounds harsh, sorry. Telling her what you're doing will only cause her upset.

Good luck.

LaurenB

I'm so glad that you and your sister are able to work together for your mom.  I agree with telling your mom that the doctor says that she "needs the best care and we have found it for you at (name of facility)."  Keep emphasizing that she deserves the best options.  You don't need to explain that she can't come back home.  I'd make the choices for her re which items to bring to her new location.  Things that will make it feel like home to her.  As far as her not speaking English as much...I'm a 20 year geriatric speech language pathologist who works in nursing homes.  So much of communication is done through non-verbal gestures.  Yes, the facility should be providing a translation service (if you're in the US), but with her advancing dementia it might not make much of a difference anyway.  I encourage the allied health professionals that I have worked with to keep smiling and move slowly one step at a time with PWD and with people who don't speak the same language or have a stroke and are experiencing aphasia.

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King Boo

I am  really sorry to be so blunt, but with the medical history you describe, your mother should not be going to a stand alone Memory Care facility.   She really needs a facility that can address her higher acuity medical needs as they come and go - whether that is in a high acuity Assisted Living with an affiliated nursing home, or a community that has Memory Care AND a nursing home.  Or, better yet, staying where she had adjusted, is getting good care and higher acuity care (nursing home at an AL price).

This would allow for 'flow' in her needs as she declines.  Go to a stand alone MC, you are going to be non stop bouncing from MC to hospital to random snf that has an open bed for rehab, back to MC.  Repeat - until they won't take her back at MC and you are scrambling to find a nursing home for LTC.  In a crisis.  

From what you describe, you're good where you are.   My LO was housed in what was essentially a MC but was called AL - but all the staff were dementia trained and could even visit him when he had to go to the nursing home fwing or rehab stints or a relapse.  

What strikes me is the lack of a MC label is bothering you.  If Mom is being treated kindly and her needs met, she is much better staying at the health facility with the 'label' of AL.  I'll also point out that the facility is honoring it's part of the life care contract.   A much more expensive nursing home bed at an AL price.  Mom's also adjusted.  This is worth a lot.

You don't have "The Talk" with Mom.  Conversation stays short term - "You'll stay until you get stronger, winter's still here."  "Your doctor wants you to get healthier".  

Whatever you do - do NOT tell her you are selling her home.  You will create a massive fixation and upset which will go on and on and on.  It will eventually fade and be forgotten .   Just say "Don't worry, Mom, we're taking care of it for you."  Which is a partial truth.  Blunt truth to a person who cannot handle or process it anymore is unintentionally cruel - you are the parent now.   

The best answer is the one that brings the most comfort.

KatieN

Thank you all for your responses.  I thought that the right answer was not to talk to her about packing up her house, it is good to see that is the consensus opinion. 

My sister and I are working on packing things up tomorrow and I will talk with her about of your suggestions in regard to staying/moving.  Really appreciate your time and experience.