Need advice(26)

DebF1949

My husband and I moved his mother from Arizona to Minnesota about 2.5 years ago.  She had the beginnings of dementia at the time and not surprisingly it has progressed.  She is currently living in an assisted living facility (not in memory care).  My husband and I visit her about once a week at her residence and, when she is willing, bring her to our home for a few hours in the morning an additional day. (She gets nervous after a few hours and wants to go back.)   I am concerned about a number of things and don't really know how to address them.  There are relatively few activities at the residence that she is interested in or will participate in.  She also says she doesn't like the food and so often eats only frozen waffles (she has a refrigerator, a  toaster and a microwave, but no stove/oven) in her apartment.  This keeps her  somewhat isolated and I worry that the lack of social interaction contributes to the progression of the disease.  But what concerns me even more so are the occasional (although increasingly frequent) hallucinations.  She often claims to have spent time with family members, her sister and her parents, and when we tell her that they are deceased she says we are lying to her.  But I am most troubled when she calls us to tell us that the entire building has been moved and she doesn't know where anything is.  She will admit that everything looks the same and her furniture and possessions are all the same but she is very upset and insists that the building has been moved.  When my husband tries to reason with her she becomes extremely belligerent.  She is less so with me, but she can become extremely hostile. When she is like this it upsets my husband and I think because of this he avoids spending time with her.  I think if we spent more time with her it might help alleviate some of the episodes, but my husband doesn't want to try this.  I think this is because he becomes so distressed to see his mother like that.   It is difficult for me to spend time with her as we have had very little time together over the years as for most of our married lives we lived on opposite sides of the country.  We have few common bonds or interests.  Our differences of opinion on how to interact positively  with his mother are causing a fair amount of friction in our marriage.  I realize this is a rather long, rambling post, and I apologize. Any advice or words of wisdom will be greatly appreciated.

M1

Hi Deb.  Sorry for the difficult situation.  Two thoughts:  first, medication can definitely help with delusions/hallucinations.  These are common in dementia, but generally if they are showing up for the first time, she may need medical evaluation to make sure nothing else is going on.  I would speak with her doc ASAP about this.  

Second, though, it that it may be time for memory care as opposed to assisted living.  Especially if she is no longer capable of going to a dining room for meals (you may think it's that she won't, but it's probably that she can't).  Have you spoken to the director of the facility about your concerns?  I'm sure you don't want to trigger something that might get her moved against your will, but it sounds like it's probably time to think about this.  

dhyink

DebF, as you have noticed, reasoning with a person with dementia usually results in an angry outburst.  You don't have to validate your mother-in-law's delusions but recognize that she sees the world differently.  There is a lot of helpful information for family members in the main ALZ.org site.   My DH was diagnosed with dementia 7 years. ago.  It took a long time for me to learn how to respond to delusions without stressing him out.  What has worked for me is simply listening to him, reassuring him that he is safe, and taking his concerns seriously.  We don't travel anymore, it is too stressful for him.  He does enjoy a trip to Subway or a local park.  

As caregivers, it is easy to underestimate how far dementia has progressed in a loved one.  You need help from medical professionals and social workers to make sure your mother-in-law is getting the right level of care.

DebF1949

Thank you for your reply.  I don't think she is ready for memory care quite yet.  She is capable of getting herself to the dining room when she thinks she might like the meal and she does get herself to the one activity she enjoys (Bingo!) without difficulty.  I think you are correct that she needs to be evaluated by her physician. I will have to speak to my husband about this as I do not have authority to arrange this.  He is really struggling with watching his mother's decline and it is difficult for him to deal with some of these issues, but he and I are working on it.

harshedbuzz

DebF1949 wrote:

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

I am concerned about a number of things and don't really know how to address them.  There are relatively few activities at the residence that she is interested in or will participate in.  She also says she doesn't like the food and so often eats only frozen waffles (she has a refrigerator, a  toaster and a microwave, but no stove/oven) in her apartment.  This keeps her  somewhat isolated and I worry that the lack of social interaction contributes to the progression of the disease.  

The lack of social interaction probably won't hasten the organic disease process but could impact how she presents especially if it leads to depression or anxiety.

I agree with the others that a MCF might be a better option for her at this point. IME, the sort of residents who thrive in a hospitality-model environment are not interested in socializing with those who have dementia which can leave isolated. We saw this with my aunt who was ignored and even bullied a bit by the geriatric meangirls at her AL. My aunt was in the middle stages and couldn't keep up with the activities or conversations. This ramped up her anxiety and the behaviors it drove. In a MCF, she'd have more positive interaction with staff and the programming would be dementia-friendly for her. 

But what concerns me even more so are the occasional (although increasingly frequent) hallucinations.  She often claims to have spent time with family members, her sister and her parents, and when we tell her that they are deceased she says we are lying to her.

Does she actually see (visual hallucination) these people in the room?  Or is this more of a delusion (a false belief)? IME, visual hallucinations came after auditory ones and delusions well into the later stages. Sometimes seeing those who've passed is more a matter of confusion and being less oriented to time. 

It is generally not suggested to correct PWD if they believe someone they love has passed. This is a situation where it's better to be kind than honest. Think about it, each time your husband corrects her she experiences the news and raw emotions of their deaths as if hearing it for the first time. My dad did this a lot with my late sister; I took it as a segue to retell funny stories about her as a child which he always enjoyed. 

But I am most troubled when she calls us to tell us that the entire building has been moved and she doesn't know where anything is.  She will admit that everything looks the same and her furniture and possessions are all the same but she is very upset and insists that the building has been moved.  When my husband tries to reason with her she becomes extremely belligerent.  

The cardinal rule of Dementia Fight Club is that one never attempts to reason with someone who has a broken reasoner. Dementia is about so much more than just losing memory-- executive function tanks pretty early on. 

FWIW, my dad had a very similar thought in the later stages. He believed he owned all the houses on the street and that they were identical inside but he slept in one and spent the day in different ones depending on his mood. 

She is less so with me, but she can become extremely hostile. When she is like this it upsets my husband and I think because of this he avoids spending time with her.  I think if we spent more time with her it might help alleviate some of the episodes, but my husband doesn't want to try this.  I think this is because he becomes so distressed to see his mother like that.

TBH, it sounds like his interaction with her is triggering a lot of this. Following best practices around validation and redirection would likely help her be less combative. Unless he changes his approach, because she can't change, more visits might make this worse. 

My mom was initially like you describe your husband. The denial was huge. There was also an irrational belief that if she treated dad like her pre-dementia husband he might rise to challenge. I spent a lot of time trying to calm the pair of them down. It was exhausting.

This short piece really opened her eyes to better ways to interact and set the stage for calmer interaction. If this doesn't improve things, medication might be needed to relieve her anxiety. 

understanding-the-dementia-experience.pdf (alzconnected.org)

It is difficult for me to spend time with her as we have had very little time together over the years as for most of our married lives we lived on opposite sides of the country.  We have few common bonds or interests.  

I wonder if it makes sense for the pair of you to visit separately. I realize you aren't especially close to your MIL, but that kind of doesn't matter so much. My father and I never got along and I was able to visit for an hour several times a week to keep an eye on things. I brought a meal or snack with me and he was always happy and pleasant once he'd settled in. If you went alone you could deliver a meal and have lunch with her or attend an activity together and see if she's different without your DH around. 

Our differences of opinion on how to interact positively  with his mother are causing a fair amount of friction in our marriage.  I realize this is a rather long, rambling post, and I apologize. Any advice or words of wisdom will be greatly appreciated.

No apology needed. You sound like a caring wife and DIL. 

DebF1949

Today has been a difficult day. My MIL has had increasingly frequent episodes of confusion and delusions.  Today the assisted living facility called and expressed concerns about her ability to continue outside of the memory care unit. We have a meeting tomorrow to discuss this. Both the facility and my husband I have tried to contact her primary care physician but she has not yet replied.  My MIL will be beyond upset to be moved. I am concerned for her while I recognize that the move is most likely in her best interest. I worry about both my and my husband’s willingness and ability to visit her when she is moved. She will be furious and I’m sure ( based on previous experiences) but hat she will be verbally abusive.  My husband’s response will be to avoid her and I suppose mine will be as well. I already feel guilty about the whole situation. I think I just needed to vent. Thank you for providing this forum so I can.

harshedbuzz

Deb-

Regarding visits in the early weeks after a transfer to a MCF. Many facilities consider it "best practices" for family to avoid visiting in the first couple weeks to allow the PWD to settle in and bond with their caregiving team. If your visits are a trigger for upset and agitation, it's no kindness to visit just then.

My dad's adjustment took about a month which seems to be on the shorter side of average. During the early visits, he could get really nasty. What helped was to 1) keep visits in the more public areas of the building where he tended to behave because he had an audience (using his showtiming against him), 2) visitng with my mother so I could direct her out of harm's way when his mood darkened and 3) bringing a treat (hot coffee, a shake, cookies). 

Our fiblet for placement was that his doctor had ordered PT for him and we found the best rehab with private rooms and couldn't wait until he'd made enough progress to come home. Mom doesn't need to know she lives there now. Mom also doesn't need to know that her behavior (which she may not recognize and can't control) is why she was moved as that seems punitive. 

HB

DebF1949

My MIL is being moved into MC today at the insistence of the staff in the AL facility.  It is a very abrupt move.  We have had only a day's notice.  I understand and agree that the move needs to be made quickly.  She has made several attempts to escape the facility but fortunately was stopped each time.  They also requested (insisted) that a family member stay with her this evening and spend the night to insure that she doesn't leave.  So here I am.  She has absolutely no idea that she will be moved.  The staff here say that is the best way.  The plan is for me to take her out for breakfast this morning and then bring her back to my house while my husband and some friends move her belongings from the AL side of the facility to the MC.  When they complete moving the essentials, we will bring her back to her new apartment.  I don't know that this was the best plan but it seems we had no other choice.  I think my MIL will be utterly devastated and furious.  She is so confused already.  The deterioration of her mental ability over the past month has been frighteningly rapid.  I find your suggestion regarding not visiting during her adjustment period is interesting.  I think my husband and I will need to discuss it with the staff to get their input.  I am very appreciative the advice and support I've received from this forum.  Thank you.

harshedbuzz

Deb-

I hope the transfer goes better than you expect.

I would trust that the facility has done this many times in the past and has learned through experience how to manage it. The breakfast and visit plan sounds like a good one to me. I would probably present the room change as a temporary thing while her other room has some maintenance issue like no heat or no running water in the bathroom. Then you can kick the can down the road with the facility waiting on a part from China.

Good luck today.

HB

CanyonGal

 I lived in your shoes the last two years. When my mother moved to stage 5 we heard constant complaints about the dining room. I compromised on some of it, “let’s buy some food items that you can eat on the days you don’t like the menu” or “you can eat breakfast in your room, the things you like, and then go down to the dining room and have coffee and visit.” 

Paranoid that robbers were in the building (housekeeping or laundry were who were entering and leaving the rooms). At night, scared she was the only one there so I would call the front office to have an aide visit with her so she would know there were people there.

She only went to bingo but I went with her to some activities to get her used navigating the building.

When we moved her to memory care, the facility moved her belongings to the new room. She was very upset at the change but eventually adapted.

It’s hard, but she safe and that’s what matters.

DebF1949

Thank you Harshedbuzz and Canyon Gal.  Your words are encouraging.  My MIL got moved in yesterday, Her initial reaction when I brought her back to the facility to see her new room was "this is where the crazy people live."  After we got her in the room she seemed to accept the change but today she is absolutely distraught.  She has called us several times in a highly agitated state.  She is back to thinking that her son (my husband) is her husband and that he has deserted her.  She begs and pleads for someone to come pick her up as she cannot live there.   I think that some of the problem is that she doesn't have much to do.  The activities director seems very competent, but she is not there on the weekends and I didn't get the best impression of the weekend staff. She used to knit and she made beautiful things.  But she has macular degeneration and her vision is exceptionally poor.  She wants desperately to be able to knit again but doesn't understand that her failing vision cannot be correct with new glasses.  She has been told this by her ophthalmologist but she doesn't either understand or remember.  This weekend is exceptionally hard as the handyman at the facility who needs to install her television is not there and so she really has nothing to do.  She refused to go to the scheduled activities today.   In the AL facility she had a microwave where she could heat water to make tea. In the MC she doesn't have that and must ask a staff person to heat the water in the common room area.  All sense of independence has been taken away.  I can understand her anger and frustration.

We don't know what to say to her when she insists that this is only a temporary place to live.  I've tried agreeing with her that this is just a temporary placement and we will look for something better for her in hopes that she will calm down but that hasn't worked.  She insists she doesn't need any help and wants to leave immediately.      

I did visit her briefly this morning and when I saw her she seemed happy enough.  She was in the dining room eating lunch and chatting with some other women.  But a few hours later she was on the phone calling us in a rage.  My husband is having a very difficult time adjusting to this.  It is so hurtful when she becomes verbally abusive.   I'm trying to encourage him to contact an in-person support group in the area but he refuses.  I know I could go but he really needs the support more than I do.

We don't know what to say to her when she insists that this is only a temporary place to live.  I've tried agreeing with her that this is just a temporary placement and we will look for something better for her in hopes that she will calm down but that hasn't worked.  She insists she doesn't need any help and wants to leave immediately.  

Again, thank everyone for "listening" and providing some input.  I'm learning a lot.   

Rosechaney

Perhaps I am not in the right place. My husband is in the pre stage of Alzheimer on hospice. Has very compromised cognition and often sleeps through my visits when I see him this condition I become severely depressed. Does any one have suggestions about how to handle this depression?

Rosechaney

my comment should have sai in the late stage of Alzheimer’s. Sorry about the error in my post!

M1

Hi rose. You will get more responses if you start a new discussion (look for the yellow button to the right). Have you thought about a grief support group? I would ask your hospice provider for resources. None of this is easy.

harshedbuzz

@Rosechaney

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

The hospice organization should have support for you-- a chaplain, perhaps a pastoral counselor or social worker. I found this place helpful; while you're welcome on the general caregiver discussion board, there's also a spouse board. My mom found a IRL support group better for her needs as well as seeing a therapist for a time.

HB

HollyBerry

I'm late to the party but the original post has been on my mind and this is the first chance I've had to sit at a real keyboard and type with all my fingers.

My mom was in AL for 2-1/2 years, and the while the facility she was at had MC as well, they said she would be fine to stay where she was for the rest of her time. Her dementia wasn't Alzheimers but more of a vascular dementia post-stroke. For a while, she would call me a couple times a week around 3am to ask where I was, when was I going to get there, and then she would describe the cruise ship, hotel, hospital, cabin or wherever she thought she was that night. The general theme was that we were supposed to meet her soon for a meal but the dining room wasn't open yet. I always treated it like a recurring dream, and would reply with some blend of playing along, reassurance and maybe a small reality check --- "mom, I'm at home right now and it's way too early for breakfast. Why don't you go back to bed for a little while and check the dining room again later? I'll call you when I'm ready to leave the house." What was actually happening was she would get up during the night and go wandering, and she'd be confused and would try to put the pieces together in the wrong way. She also had lots of stories about the building, the construction, the person next door who got stuck in (on?) the toilet, sounds she heard at night, conversations she must have heard among the staff and blended in with whatever else was swirling around in her head. She told me she had been asked to organize a baby shower for one of the nurses and she didn't think she ought to be asked to do that!

Anyway. When she first had the stroke, she was in a different AL near my brother and he was the primary person in charge of all her care, appts, communication with the staff, etc. When his life took a different turn she moved closer to me and it was the first time since college that we lived in the same state. I think my brother would have had a lot more trouble with the changes she experienced, but I had more distance and maybe that was actually helpful.

My mom did almost everything the OP describes about her MIL, except for the resistance to being in AL at all. She would tell me she thought she ought to look for a different place to live, and my response was "we looked at several others when we were choosing this one, so I could contact them again if you want." Bald-faced lie, I had no intention of doing that, but I even dragged out the brochures one time just so she could look at them. She would be happy in the moment, or unhappy in the moment. She would spin stories about the past that were absolutely not true, but she believed them, so why not? I think for most of the time she lived here she thought I was her sister, and the stories she told went back to the 1940's and 50's and her first husband. She rarely talked about my dad (that hurt!).

All this to say, I think this back and forth between fantasy worlds can be considered delusions or hallucinations, or you can reframe it as her brain's failed attempt at keeping old stories old, new facts new, and the inability to put the pieces together in the right way. As one of the nurses said to me, at least she's going on vacation! that's a fun thing, and she could be calling you about the plot of some horrible tv show she watched or something awful she heard on the news. And for perspective, it's better to get a call from your LO in the middle of the night, than it is to get a call from the staff about your LO.