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Should possible sudden delirium(?) change our plans?

MamaMatters
MamaMatters Member Posts: 4
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edited March 13 in Caring for a Parent

Hi.  Does anyone have experience with delirium or psychosis that came and went after a major life disruption?  

We are feeling desperate right now! 

It is regarding my husband’s parents (Sally 84, Fino 93).  

Background:  

They have refused to move to an AL over the years, and with some outside assistance, have managed to stay in their home in MD of 65 years. We live in SC and their other son is in FL.

Sally has had mild dementia for several years.  She is very healthy and has no physical limitations. She cares for herself (bathing, toilet, putting on makeup, doing her hair, dresses herself nicely, etc.)  She does need someone to give her her daily meds, and is confused about foods/meals, though she can make eggs, get things out of the fridge, heat things in the microwave, and puts them on a plate and eats at the table.  She cleans up the kitchen, and does laundry.  She is never violent, angry, or verbally abusive, and has never wandered outside.  

Fino has been caring for her, but has bladder cancer which has now advanced to closing off his one kidney and eventually will close off the other.  He does not want any treatment, and is getting frail; it’s only a matter of time till he passes from kidney failure.  Since he can no longer care for Sally in his condition, he asked to be moved to an AL facility (by himself).  We  moved him last week and he is settling in.  It is about 15 minutes from their home.  Sally showed no emotion about his move and, in fact, never showed any emotion about him having cancer.  

We stayed with Sally in her house after Fino moved and took her to visit him 1-2 times a day.  She seemed to do okay with his move EXCEPT that some of the furniture and one TV were missing (they went with Fino), and we had some of our belongings (luggage, food) in the house.  She expressed a lot of anxiety about that.

Side note:  Our plan has been to bring Sally down to live with us in SC in an apartment over our garage, with access to our home. (There is no oven, stove, or microwave there.)  We live in a beautiful, safe place, we are retired and have time to care for her, and we have cats which she loves.  This arrangement would be until she requires more care, at which time we will move her to an MC facility.

However, 4 days after Fino moved out, Sally started experiencing serious agitation and anxiety.  She started having delusions and hallucinations (seeing her mother, babies, other people), forgetting who we are.  She’s had occasional delusions for years about someone stealing her clothes, as well as poor short-term memory, but THIS was like an emotional storm suddenly hit her.  She could not sleep, wandered around the house clearly upset, confused about where she is, etc.  She constantly demanded to see her (long deceased) mother and was very upset that she couldn’t.  She asked non-stop questions about who is who, when she was going home, etc. She was not doing any of this before Fino moved out.   

We suspect psychosis or delirium triggered by Fino’s move, but not sure of that as we are just learning about this subject.

Her doctor actually visited her at home, and we had her checked for a UTI (negative).  Her neurologist seems disinterested and simply prescribed an antipsychotic, which has helped her to sleep at night. 

That is all by way of background (sorry it’s so long).  What we are wondering is…

She cannot live by herself, and we cannot live in MD with her indefinitely, so we have to move her SOMEWHERE.  We are still thinking to bring her to SC to live with us, with the hope that this sudden change will end and she will return to her prior “normal” and perhaps settle into a routine in a new environment which is much more pleasant and engaging than where she has lived.  Is this a possibility? Or should we assume she just needs to go into MC now?  We hate the idea of putting her in MC because she was not ready for that 10 days ago!  But we cannot handle her in the highly-agitated state she is in.

Wow, if you read this far, I truly thank you!  

Comments

  • pamu
    pamu Member Posts: 62
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    edited March 13

    My mom went from living in her apartment to AL… she lasted 18 days there until she was hospitalized after a major wandering episode and was then released to MC. It was that fast. My mom's PCP and neurologist did not/would not manage or monitor her symptoms. Her geriatric psychiatrist does that. It sounds like your MIL needs medication or a change of medication. It's possible your FIL was "scaffolding" your MIL…meaning he was supporting her to the point that she appeared to be better than she actually was. My mom is like your MIL where she is able to take care of her hygiene and appearance but her cognitive functions/emotions vary from day to day and has delusions, anxiety, depression, and agitation. Your MIL will definitely need 24/7 care. If you haven't already, start applying to MC now, even if home care is manageable right now - most have wait lists.

  • H1235
    H1235 Member Posts: 1,690
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    Welcome. I would suspect that Fino was providing more scaffolding for her than anyone realizes probably even Fino. Without that she is falling apart. The routine she had with her husband has also been disrupted and that can cause an increase in symptoms. Lack of empathy is a common symptom with dementia. I wouldn’t be surprised if she might show some mild improvement with 24/7 supervision and guidance (mc). Medication may also help, but it can take weeks for it to take effect and is usually started at a low dose and increased gradually as needed. I would think living in an apartment over your garage is going to be too much independence for her. If she were to forget and leave the stove on just once she could burn the house down. I was told the appropriate level of care is for one step/stage beyond where they are currently at. The reasoning is you never know when they will start showing symptoms of the next stage and those symptoms could be very dangerous if they slip by the caregiver unnoticed. I have found there are so many little details that are easy to miss when caring for someone. My mom had still seemed very capable even after diagnosis. I took her to the dentist every 6 months and she got a new toothbrush. I just assumed she was swapping it out with her old one. I was wrong. When we moved her I discovered she hadn’t replaced her toothbrush in way too long. I was with her one day while she did laundry and discovered she had ran the washer with no clothes. When she discovered this she ran it again but still forgot to put clothes in. I imagine sometimes she was forgetting the soap. She has a book by her bed that might lead you to believe she can read for enjoyment. The bookmark has been in the same place for 6 months. I could go on and on with these little things that are easily missed. I think someone can appear much more capable on the surface than they really are. I would suspect that even 10 days ago she was ready for mc, Fino was just providing that care for her. I have attached a few resources. I’m glad you found our group.

  • MamaMatters
    MamaMatters Member Posts: 4
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    Thank you for your comments and insight. I had not heard of the term "scaffolding" yet, and that makes sense. Sounds like your experience was very similar. My MIL just wandered down the driveway and up the road with her coat on and purse…between the time I made my post and now! So I guess she is now a wanderer as well.

  • MamaMatters
    MamaMatters Member Posts: 4
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    Thank you for your response and the links…I will check them out. I'll make a quick change that the apartment does not have any way to heat food—no oven, microwave, stovetop. Just a sink, fridge and coffee pot.

  • harshedbuzz
    harshedbuzz Member Posts: 6,270
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    Hi and welcome. @MamaMatters I am sorry for your reason to be here but pleased you found this place.

    This is very hard stuff. I think there are a couple of things in play here. It's very likely your perception of your DMIL's degree of impairment was impacted by showtiming, scaffolding and the progressive nature of the disease.

    The dementias are almost all progressive meaning that, over time, the disease will move through 7-stages with losses as the PWD moves from one to the next.

    Many PWD are able to showtime (seemingly get their acts together and appear to function almost normally) for friends and family who don't live with them. Well into the mid-stages of dad's dementia, he was able to maintain his showtiming for a couple days at a time during my visits. Like your situation, I was a distance away and would stay overnights with my parents.

    The other very real piece to this is the amount of scaffolding a spouse/primary caregiver offers a PWD just be being there. I have seen this in play even with the relationship isn't great or when the caregiver isn't fully engaged with the PWD. The routines, ebb and flow of the days and security they provide can't be overstated. It wasn't until mom was hospitalized and I flew down to FL to see them that I got a clear sense of how impaired dad was as I was there over a week and mom wasn't. It was a real eye-opener.

    In terms of next steps, MIL is going to need to be moved to a MCF near her POA. Long distance caregiving is not sustainable without hiring a geriatric care manager to be your eyes & ears. Depending on the timeline prognosis of your FIL, that might mean a temporary placement in a facility with her DH until he passes and arranging for an aide to transport her for visits assuming that's a positive thing for both. Or it could mean, moving both to a facility near you or another sibling. If both you and sib are equally appropriate to take over MIL's care decisions, you might want to consult with a CELA to see if one state is preferable. This is especially true if there is a possibility of mom needing Medicaid at some point— every state manages residential Medicaid differently.

    HB

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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