When is the right time for AL?

laura141

Hello. This is my first post. My 87 year old MIL was diagnosed with dementia (Alzheimer’s +) in March of this year. This brought clarity to the cognitive and personality changes we had been noticing over the past couple of years.

Memory changes are really the least of her symptoms. She does have trouble with memory recall and jumbling up the timing of when something happened. But, the most troubling symptoms are her visual & auditory hallucinations, delusions and paranoia. Yes, we check for a UTI, every time we see an increase in the severity of these symptoms. What she sees, hears, fears is usually very troubling to her. She is often frightened that she is in danger. She grew up in East Germany during WWII and saw atrocities that most of us would have no idea and I believe this influences her hallucinations/delusions.

She currently lives in her home. She has a care giver during the weekdays until 2:00. My husband and I (one or both) are with her 2-4 hours every evening and cover both days and evenings on the weekends. She spends overnight alone, unless she is especially frightened and then one of us will stay with her. We have cameras in the home so we can monitor her and be sure she is safe. She is mobile but not enough to be a wandering risk.

These delusions, etc used to be sporadic but have been happening every day for the past 5 weeks now. They come and go throughout the day and seem worse at night and in the morning upon waking. Twice we have taken her with us to my own moms for a week and, when there, she doesn’t have any of these “Visitors “. I assume that either her home is a trigger or being alone is no longer serving her.

We have a deposit down in a really wonderful AL/MC facility for when the time comes. I HAVE NO IDEA WHEN THAT TIME SHOULD BE! She loves her house and doesn’t want to leave. She believes these delusions/hallucinations to be reality so, to her, that’s not a reason to leave the house. She thinks that her only problem is some light memory loss and needing help with meals, cleaning, etc. I know from my research that she would probably be better off in AL where she would get proper stimulation and support but just don’t know how soon this should happen.

My apologies for such a LONG post but this is so new and I’m not sure where to turn. Does anyone have any experience with Alzheimer’s manifesting in these ways or in knowing the appropriate time to place a loved one?

I would appreciate any input.

M1

Hi Laura and welcome. Short answer: now is the time, and it likely needs to be MC from what you are describing. If she is delusional, ANY time alone is a risk. She needs 24/7 supervision.

There are a couple of sayings on these boards that are relevant here: first, if you are asking whether it's time, then it's time. Second: by the time most families start to consider AL, that ship has sailed, and MC is likely needed. I think this has to do with our tendency to see our LO's through rose-colored glasses, and not underestimate the severity of the deficits when the changes have been so gradual. It's natural for us to project our memories of the former person onto the shell of what we're experiencing now, so that the full effects are masked or minimized.

Couple of other questions come to mind: you do have power of attorney? Hope so, as you obviously need it; and secondly, is she on medication to try to tamp down the delusions and hallucinations? Again I hope so, as there are a number of medications that could help, and if she's not, I would pursue this asap.

I wish you well, you have come to a good place. Until you can get her moved, I would think about hiring 24/7 help unless family members can cover.

laura141

Thank you so much for taking the time to share your insight.

My husband is her only child and her other family members are in Europe so it’s just him and I. We have asked about medication but seem to get the same answer from her MC social worker, as well as her neurologist, that antipsychotics are the option and, at this point they are not recommending them. Also, we are concerned about these types of meds dulling her personality. She still has periods of “normalcy” so it’s hard. We are waiting on a response from her pcp in regards to possibly upping her Zoloft.

I know at my core that a care facility will be the bast place for her. My husband has POA. We already have a physicians report into the facility. They also agree at the facility that now would be the best time as well. Specifically so she can avail herself to the activities and programs that would likely help her and so she can make social connections while she is still able.

While we are wrapping our heads around the timing, we are currently discussing bringing someone in overnight. It’s just not sustainable long term.

Again, thank you so much for your reply. I appreciate you.

M1

Laura its just personal experience, but if you read a lot of threads ,low-dose Seroquel and risperdal can be extremely effective with few side effects and should not alter her personality. Don't be afraid of them, they could really help. Does she have a geriatric psychiatrist? Does the facility? I would really question the neurologist on this, the delusions aren't pleasant for her either.

laura141

Oh thank you so much! I’ll ask about these meds. She does not currently have a geriatric psychiatrist. The facility does have that type of support.

Your response is greatly appreciated. Since this is relatively new, I feel pretty undirected at times.

Anonymousjpl123

Hi Laura and welcome. Like M1 said, it sounds like it is time for her to move. It is a gut wrenching decision but she likely cannot get the level of care and socializing she needs in her home.

My moms progression was fairly rapid (though in hindsight may have begun sooner but my dad was there to handle/cover for it) so we had to make it a mandatory for my mom. We gave Her a choice between moving to assisted living/MC or having 24 hour help. She chose AL.

Because of your MILs profession and diagnosis, I can say that MC is as good as it gets. Staff are trained to work with people with Alz/dementia. Residents are among peers facing similar issues. My mom may not even have to stay (we are waiting to see if she has shunt-responsive NPH), but I’m so glad I had a place with an MC section and expertise in the area.

Like M1 said, power of attorney is critical. It’s really good you have a place in mind. You will find a lot of good advice and support here. You’re not alone.

laura141

Thank you so much for your input.

What is lovely about the facility we have chosen is that is is a mixed AL and MC facility but MC is where it really shines. I know sometimes, in a mixed facility, MC is not as specialized. Not the case there. There is a very developed geriatric psych department as well. MC and AL each have their own sector of the facility but there are no barriers between the two, with freedom of movement.

Upon initial assessment, they feel she can start in AL and transition to MC (she can still dress, groom, etc). She would still have all of the psychological MC support, even when in AL. They also have an amazing intern program where they have psych students doing a year long internship where their only duties are to spend time with the residents. It’s lovely.

I wish you all the best for your mom and her upcoming procedure and, wherever she ends up, she finds a peaceful life.

Anonymousjpl123

What I can tell you is finding a place where you feel staff are competent and responsive is everything.

That is basically what my moms facility recommended: that she start in AL and move to MC if or when needed.

When the time came (last week), they moved mountains to help me get her to the ER, hospital, and now MC - helping get stuff moved before discharge, finalizing paperwork, working with the hospital. AND…because of her potential diagnosis of NPH, they have assured me they will be flexible if somehow she ultimately can move back to the AL side.

@laura141 it sounds like you found a wonderful place with all the right care. This will help immensely as you, your MIL and your husband weather this terrible disease.

laura141

So happy that the facility your mom is in is so supportive and accommodating!

Wishing you and your family all the very best💖

laura141

@M1 I contacted her neurologist to update her on the advancing symptoms and to revisit the medication conversation. It seems that she is now suspecting mixed dementia with Lewy Body Dementia. I have had suspicions of this but since it wasn’t in her initial diagnosis, I didn’t second guess.

As such, the antipsychotics are not recommended for her because they can exacerbate the LBD symptoms. I don’t know if you knew this but I thought I’d share, just in case. You’re such an amazing source of knowledge and information!

I have a phone call scheduled with her neurologist to discuss other options.

Thank you for all of your time and insight ☀️

M1

oh yes,,,so glad you pursued it, that was exactly the right thing to do, maybe they can come up with some other options that will help. Hope so.

Robyn76

When my mother had vivid dreams and heard voices at two different points in time, we figured out it was caused by one of her blood pressure meds (metoprolol tartrate) and the next time by Ashwagandha gummies. Just a thought.