LO doesn't know if she wants to live with us

oehlsena

Hello, I haven't been active on here the past week, but I thought of something I wanted to share. 

My LO gets agitated and will talk about she has to "get going...." Every single day she has somewhere to "get going" to, and this is usually our main topic for the whole day. She will say she needs to go "home" which isn't very uncommon as I've read other stories of people with Alzheimers expressing need to go "home." However, she not only needs to go "home," but she needs to go to the store, "the racetrack," the museum, or, most often she will trail off or mutter ineligible while still trying to "go." 

So, this is one type of interaction that I have with my LO. Another type of interaction that I have with her, is being accused of doing things that I have not done. For example, the other day she was asking for her "stuff" that I had "taken." She could not be distracted from this idea of hers for hours and it soured the whole afternoon and evening even after she had seemed to somewhat forget about it. I didn't know how to gain her trust again after she had these suspicions about me. 

So, anyways, oftentimes these two types of interactions will overlap to create a whole new experience for us in which she is agitated/angry and also believes she is being mistreated/trapped in some way. The first type of interaction will also evolve into panic when she is prevented from actually leaving. 

In trying to reassure her, I will say "you are not trapped here," and I will often try to ask her questions about where she WANTS to be besides sometimes "anywhere but here," or "home." However the majority of the time I cannot get a clear answer. I will remind her that we removed her from a care facility and that she WANTED to live with us. In that state she will not believe me. The only way I have found to get her to calm down is to put her in bed and make sure she does not hurt herself, and within a few hours she will forget about it. 

What drives me crazy is. . . She isn't trapped here. If she could tell us that she wanted to live with a different family member or at a care facility then we would actually look into that, however she never says that. We just want to make sure she doesn't wander around lost and hurt herself. So, I feel bad that she feels so trapped, however her sense of trapped is skewed. Sometimes I can distract her, and sometimes she is not in the mood to be distracted. I can tell she's really struggling with these ideas that she gets and I would love to be able to help her. I think that finding her more friends would be really helpful, but I'm not really sure where to find her anyone who is on "her level," and my DH was adamant in the past about inviting "strangers" into the house.

 I think the senior center would be our best choice into finding her more social interaction... The issue is that my DH works A LOT now, and I have found that I haven't been able to handle her in public when she has a meltdown. I think that this is where most would seriously consider the care facility again but I'm hoping we can somehow do in-home help. She has debt and only >10,000 in savings but maybe medicaid can help with that? 

Edit: I realize I shouldn't have too high of expectations for her and that this is normal behavior for someone with dementia. I guess I just wanted to vent to anybody who can relate! I also feel some guilt about the relative levels of "trapped-ness" she experiences- I don't want to give her the idea that she CAN just leave by telling her she isn't trapped, because she can't just walk out the door!

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Rescue mom

Strongly agree with most everything Victoria said. It was so hard for me to learn there is no point in using logic, or rational arguments, or trying to “convince” them like you would with others. Their brain is broken, they cannot think like that any more. She doesn’t remember and/or can’t comprehend she asked to be there, and you cannot convince her. Try to sympathize and distract.

You mentioned senior center…do they have adult daycare or programs for elders with dementia? That sounds like it would be good. There would be others like her; some who are not as deep in dementia are given “staff” or “helper” roles which make them feel good. The staff is accustomed to meltdowns, it’s common, they expect that and know how to handle. 

Many want to “go home” or as you said, just “go”, no matter where they are, or if the place is long gone (like a childhood home). Or they get taken to a place they wanted, and it doesn’t suit either. Most people just agree and delay: “ok we’ll go (when the rain stops/when the repairs are done/when the road is clear etc)” Then try to distract them with a treat or a walk, whatever works.

You taking things: sometimes the easiest thing is suck it up and say “I’m sorry, maybe I moved it. I won’t do it again.Let’s look for it when I (finish the dishes, get my bath, finish eating etc).” Again, no point n arguing or trying to convince her. It upsets her and wastes your valuable energy.

Medicaid can help a lot with costs for a facility, I’m not sure if they help with at-home aides—which are far more expensive in long run than a facility. I don’t think they help, but that could be wrong of me.

If she’s not n Medicaid, I’d advise getting started on that yesterday. What you do right now has huge impact on your qualifying. Some people here have done it on their own, but many, most I know IRL, got an elder lawMedicaid specialized  attorney to help. There are tons of “tricks” and sort-of loopholes that attorneys know but are much harder for others to deal with.

Taking care of her at home is only going to get much much harder, it s like a 24/7 job doing only that. Doing that, along with work and family, is nigh impossible for most people unless you have a lot of other caregiver help.

mommyandme (m&m)

There’s a lot of us here who relate… you’re/we’re not alone.  I mostly feel I’m not alone because of this forum.  Thanks for sharing! 

I find this strange reasoning, or lack thereof, by our dementia ridden LOs, all too common.   I wonder if needing to “leave” is really about their discomfort in their body and mind.  They know they didn’t do something to deserve how they’re feeling so they’ve got to find something to squelch the feelings or someone else to blame.  If they go somewhere else the feeling will sure to be gone, right.  “I don’t know where this or that is so someone must have taken it because I certainly didn’t do it”. Maybe it’s just self talk to try to comfort themselves while they’re afraid, sad, mad or whatever.  If it’s purely a mental or physical anxiety then comfort is really all we can provide.  They don’t really mean to hurt our very soul, do they? well maybe sometimes. 

Anyway, I find lots of different paths in comforting my mom.  Often I take responsibility for whatever it is, blame me, it’s ok, I’m ok.  A hand hug, a smile, a song, a body hug, validation of her feelings.  Anything to relieve a little of the anxiety if I can. I know when I’m feeling anxious I’d love for the feeling to subside.  

This forum just helped me with my tinge of anxiety. Thanks!