Help with Conversations with someone who has Alzeimers?

JennShim

My husband's aunt has no children of her own, so she gave him durable and medical POA in 2012 when she was still able to live independently (4 hours away from us). In the last 4-5 years we noticed that she was repeating stories, getting confused on how to get home when she went to the store, and heard from neighbors who were worried about her so we moved her sister and another caregiver in with her to keep her safe. 

In October of 2022 she had a stroke and the doctor determined it was not safe for her to return to her home. We put her in a rehab facility but she could not make any progress because she could not remember what she had learned or worked on the previous day. We had her transferred to an Alzeimer care facility close to us in December 2022 so we could see her and be involved with her care. She is in a wheel chair and has a horrible fear of falling so she screams every time she is moved from her chair. She now cannot remember anything so we have the same conversation over and over about where she is, why she's there, and where we live.  

Last night when we visited she was trying so hard to communicate that she didn't want to be there, why was she here, why did we leave her and go home, that something was not right, the other people there were weird, was she weird, etc, but was having trouble grasping the words she wanted to get out. She seemed so much more alert and aware even with the difficulty expressing herself. Does this mean she's getting better? We are so confused about what we should or should not say to her. We have told her that her doctor said she has to stay here because it is not safe for her to live alone until she gets stronger/healthier, but are there resources on how to answer these questions and calm  her down? We just don't want to say the wrong thing or upset her more. She gets upset or mad every time we have to leave. We just feel hopeless and lost.

harshedbuzz

JennShim wrote:

Hi and welcome. I am sorry for your reason to be here but glad you found this site.

In October of 2022 she had a stroke and the doctor determined it was not safe for her to return to her home. We put her in a rehab facility but she could not make any progress because she could not remember what she had learned or worked on the previous day. We had her transferred to an Alzeimer care facility close to us in December 2022 so we could see her and be involved with her care. She is in a wheel chair and has a horrible fear of falling so she screams every time she is moved from her chair. She now cannot remember anything so we have the same conversation over and over about where she is, why she's there, and where we live.  

Last night when we visited she was trying so hard to communicate that she didn't want to be there, why was she here, why did we leave her and go home, that something was not right, the other people there were weird, was she weird, etc, but was having trouble grasping the words she wanted to get out.

I'm sorry. That has to be hard for you to hear given all the effort you have put into keeping her safe and well cared for. 

It sounds a bit like maybe you are responding in a way that assumes skills she no longer has. Reasoning, executive function tank fairly early on in the progression of dementia. She likely has some anosognosia which prevents her from being able to appreciate how impaired she is or acknowledge the level of care she requires. In the context of these 2 factors, it is probably better to redirect the conversation when this comes up. You may be surprised that her short term memory is such that she's repeating on a loop she may not be able to sustain her upset. If she not quite there, you could tell a bit of a fiblet saying you wish she was home, too, but that the doctor wants her stronger before she can come home and then pivot the conversation to something pleasant.

My dad also commented on the mental state of his fellow residents (pot meet kettle) and could be very aggressive and angry about being in a MCF at all. In the early days when dad as at his angriest (and very articulate in his complaints) I found keeping visits in a public area like an alcove off the atrium was best. He had just enough on the ball to behave himself among the staff. (this is called showtiming) I also found it useful to never arrive empty-handed; most often I brought him some sort of treat he wasn't going to get on the MCF's heart healthy diet. 

She seemed so much more alert and aware even with the difficulty expressing herself. Does this mean she's getting better?

If she seems more alert it might be because she so upset. PWD can seem a bit better in a MCF for a time sometimes until the disease progresses further. This typically happens if the PWD is living alone without a proper diet or social interaction. Moving into a structured setting with dementia-informed care and activities, some PWD do seem more with it. I saw this with my aunt who'd been a widow living alone and then for a time staying with her lifelong frenemy and her caregiving niece until guardianship was sorted out. 

We are so confused about what we should or should not say to her. We have told her that her doctor said she has to stay here because it is not safe for her to live alone until she gets stronger/healthier, but are there resources on how to answer these questions and calm  her down?

She may need medication if she's routinely agitated. A low dose of something for mood/anxiety could be useful for helping her settle into her new home. 

We just don't want to say the wrong thing or upset her more. She gets upset or mad every time we have to leave.

I would redirect after saying "doctor's orders". Bring up a happy memory or share pleasant news or a treat. Early on leave-taking was hard with dad, too. IME Ghosting is the way to go. It can make sense to time visits to just before a meal or activity so you can escort them to the next location and fade into the background. Sometimes you can ask staff to come collect her from you so she's leaving and you aren't. When all else failed, I excused myself to use the restroom and just didn't come back. Short term memory can be such that out of sight is out of mind. 

We just feel hopeless and lost.

It's hard. But it sounds like you have really stepped up for this lady. Your concern for her well-being is very evident in your post.

HB

MN Chickadee

I tried to bring things to do together so that conversation was less important since it was so difficult. Mostly puzzles, or a new magazine or old family photo book tp page through etc. Also a portable speaker to put music on, mom's favorite music would put her more at ease. 

I would pretend it's temporary. The doctor wants you to stay here a few more days. When she asks when she can go home just say soon. Maybe next week. Re-direct to something else. Validate her feelings about not belonging there, maybe say you understand and will work on getting her out and then change the subject. Don't make a big ordeal out of exiting. I usually did as the previous poster said and faded away as staff were getting mom settled at her dining table or excused myself to the restroom and disappeared. Doing a big thing where you say goodbye and leave her there is only going to make things worse. You will have to find the right therapeutic fibs for all of her questions and things that make her anxious, this is the kindest thing we can do given their cognitive decline. 

SEM_BOS

Just adding that I like harshed-buzz's advice.

And my sincere sympathy to the OP.  I've got some similar challenges and it's rarely easy.

JennShim

Thank you so much for your help. I really appreciate it!