Feeling Sick and Confused

Nighttide

My brother and I took our mom to memory care today, and it did not go well. She is very lucid and talkative compared to all of the other people we have met at the memory care place, and even the nurse there said that she was wanting to evaluate her to make sure she wouldn't be better off in AL, and that she would bring her to the AL side of things for activities. She is very aware that she doesn't fit with the others who she said look like they are drugged. My brother and I totally agree that she doesn't fit in.

We set up her room and brought things we believed she would like and decorated it and made it nice, and she hates it. It's so small, and that is upsetting. She was heartbroken looking around at everything. We kept trying to reason with her (I was just reading some posts on here saying don't bother trying), and as you can imagine, it was in one ear and out the other. She would listen and agree and then forget and not understand why we were leaving her there and refusing to let her go home to "pick out some things", which we know would mean a meltdown and refusal to go back to the place. We tried to explain that her memory isn't working as well as it should (trying to stay somewhat positive), and as an example, she never remembers who I am.

The guilt is tearing me up. Part of me is ready to pull her out of there and bring her back home. I can't even stand to see an abandoned animal let alone think about my mom being unhappy. Mind you, she raised me and my brother with significant guilt tripping. I am just totally freaking out and feeling nauseated by this idea of taking her away from her home.

She has diagnosed ALZ that seems to be level 6. She doesn't do anything for herself at all. Can't dress herself other than a robe, but she sometimes doesn't realize she is naked and will hang out at her house naked. We have cameras around her house to make sure that she doesn't fall and not get help, and my brother comes to her house about 4 times a week. I live out of town and come to help about one weekend a month. She has lived alone for a very long time and always enjoyed it. We see that she sleeps a ton or will sit at her kitchen table doing nothing as far as we can tell. She eats on her own but has gotten to the point where she just eats what is left in the fridge for her and at this point gets confused about how to microwave frozen dinners properly. She is either incapable of or uninterested in doing anything at all other than eating and sleeping, and she has gained a ton of weight and has trouble walking. We are hoping some PT and better meals at the facility would help. She has fecal incontinence and absolutely refuses to take a shower until I can come and trick her into it. Sometimes she has a major meltdown and turns into a 2 year old. She does enjoy seeing me and/or my brother, and it's hard for us to tell her mental state because we just talk and joke around with her. She has been so lucid recently, but at times in the past she has told some crazy stories, because she has fabrications.

Anyway, that's the jist of our mom. We have a meeting tomorrow to see the AL areas, but as I've been writing this, I have found myself wondering if my brother and I just need to be patient and trust the nurse to make her assessment without us butting in. They recommend we stay away for a week to let her acclimate. I'm just totally upset and freaking out thinking about my mom being unhappy, scared and alone. But I also don't think that either my brother or I would do well as caretakers. I literally peed my pants twice last night gagging because of the smell of her poo, and I threw up in my mouth.

She has a good long-term care policy.

I could really use some advice from people who have been there. What do you think of her being so lucid and talkative? Are my brother and I deluding ourselves into thinking that she is better than she is? Or is she doing that thing people talk about where ALZ-ers put on a good face? I'm so confused and upset.

Thank you for listening!

harshedbuzz

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

I can appreciate that it is hard to see your mom in a setting with some who are further in their disease progression, but that is the nature of a MCF that allows residents to "age in place". The populations in these places can turn over fairly quickly and things could improve as new folks move in.

From your description, it sounds as though however chatty your mom is, she lands squarely in stage 6 of Tam Cumming's 7-Stage Model. Inability to do her ADLs (like dressing) and bowel incontinence are late-stage symptoms— she sounds appropriate to MC. AL is for folks who don't have dementia but need a little assistance. My aunt was put in AL (she could still dress and wasn't incontinent yet) but she didn't always turn up for meals and couldn't keep up with the games and conversation of the other ladies and was shunned. If she's not wildly inappropriate, she might do well for activities on the AL side; my other aunt did this for the first couple years in MC.

It's hard to place a parent. I imagine it's especially hard if you were raised on a diet of manipulation through guilt which will likely continue well into the latest stages of the disease. But the reality is her safety comes first and MC can do that in ways you can't one weekend a month.

You aren't doing this "to her"— dementia is. What you have done "for her" is find a place where she will be safe and cared for.

HB

H1235

I am going through getting my mom to AL now. It’s not good. In my mind I have tried to compare it to a child who does not want to go to school. You talk up school and how fun it will be etc. but the bottom line is the child still has to go even if they don’t want to. It is what they need. It was heartbreaking bringing my child to school in tears those first few days. I think the same is true bringing our LO to a facility. Bottom line AL or MC is where they need to be and it is what is best for them. It is still very hard, but we have to do it. This analogy works for me.

Quilting brings calm

I think MC is the appropriate place for her. Wandering around naked is not AL level. They will help you get dressed but they aren’t going to deal with the realities of your mom as you describe it, That’s beyond their level of care.

The MC will be able to better evaluate her after a week in their care. You will probably get told MC is the appropriate level. That doesn’t prevent them from allowing her to go to AL activities.

M1

Welcome to the forum. I completely agree that she is entirely appropriate for MC and not AL. All of us tend to see our loved ones' capacities as better than they really are. And I would absolutely heed to staff's advice to stay away for a while and let her settle in. Keep us posted how she does.

machelriller

I had a similar struggle with moving my dad to MC. He sounds similar to your mom, but he doesn't have incontinence. I really wanted him to be in AL, but the facility stressed that MC would be better for him. It broke my heart to see him with people who were so unresponsive and so much farther along in their dementia. He is lively and social. But he has been there for six months and he is doing really well. He has made friends with residents who are more on his level. And, sadly, as some of the residences have passed, people have moved in who are not as advanced in their dementia. MC was absolutely the right choice for him. It will get easier to see your mom there over time.

Emily 123

MC should provide a better level of support for her, as the staffing ratio should be higher there- that means a closer eye on things like toileting and making sure she eats. A major move like that from the home where she has a routine will be stressful, and it’s not going to be beneficial to assess how she’s going to function in that ramped up kind of state. It would be beneficial to give her some time to settle into a routine there. You note that she really doesn’t do much when left to herself, so consider that the small size and limited environmentof a MC suits the capacity of the PWD, who can’t handle a lot of input or choice-making. At the level you describe she’s not likely to be able to get the care she needs on the AL side. Having her participate in the AL activities will let her stay engaged but living on the MC side,so she has oversight and support, will help her.

CaliforniaGirl-1

My LO presented really well for a long time. She refused to leave her house and go to AL. When she did go, it was really already too late for AL. (very common) She did not seem to need MC and was somewhat capable of conversation. But that was kind of deceptive. In fact, she did not do well in AL.

When she went into MC, somewhat over our protests at first, she thrived. I was concerned because many of the residents were further along than she was, or at least the disease was progressing differently.

In MC she is treated as real member of community with likes and dislikes and she has friends and people she likes and people she doesn't like (like any community). But they know about her deficits and that she wants to do things for herself and make her own choices and they work with that. It has been a much better experience for her.

Nighttide

Thank you so much for your replies. This has been so rough. My brother and I talked to the people at the care facility, and they want to see how she does in AL but also knowing that she might move to MC sooner rather than later. The room we were lucky enough to get is much nicer, with a separate bedroom and a little sunroom. The hope is that she will simply enjoy it better. They assure me that they do have people over on the AL side who are more advanced in their dementia than my mom.

I think a big problem with her is her lack of interest in getting out and/or meeting people (that's how she lived her life, so it's hard to imagine that changing, as chatty as she can be when she does meet people), so I am going to stay on them to get her up and about. This may all end up being an exercise in seeing how far along her ALZ truly is. I have read stories on this forum from people whose LO was very talkative until the very end, which makes it confusing, as it can mask how far along they truly are. However, I do see my mom's point that it is upsetting to see herself surrounded by people she can't relate to since she is so aware of it. I just hope she isn't shunned by people in AL and that she gets the care she needs.

BassetHoundAnn

Hello, Nighttide. This is such a difficult time. My mom was in Stage 6 when I moved her to memory care, with symptoms similar to those of your mom. She was also very talkative, far more so than others in memory care, and I likewise worried whether it was a good fit for her. She was incontinent, both bladder and bowel, and they say that's a significant marker for memory care as folks with dementia can't manage that on their own or in assisted living. I think memory care was a good move for her, as she couldn't manage ADLs. She talked to aids and staff every day. And there were some in memory care with some conversation skills that she befriended.

One warning: they assured me that while she was in memory care aids could take her to activities in the assisted living section of the building, but that never happened. Not ever.

One needs to keep in mind that this disease progresses. Sometimes quickly. It wasn't long before my mom could not manage even dressing on her own after I moved her to memory care. So I was glad that I moved her there when I did.

She is now in late Stage 7 and is still a chatterbox at times. Aids and nurses chat with her every day, hospice volunteers visit her. I visit her too.

This is a horrible disease. My sympathies are with you. The decisions are so hard.

Anonymousjpl123

@Nighttide I feel you so much in this. It is an agonizing decision and situation because you want to do what’s right for your mom, and there are no easy answers. What I can say is that you will learn as you go, and she will too, and you will never regret trying to be sure you find the right fit.

I was like you, and my mom is now in MC, but I’m so glad my mom started in AL. It was important to both of us. She now thinks she lived in AL for 5 years (she was there for 6 months), but it does give her a sense that she is not alone in a place where only those who are very advanced in the disease go.

In our place, yes, there are people as advanced as my mom in AL. I actually tried to get them to let her move back, and the reasons they gave for not letting her were assistance with ADLs, incontinence, paranoia/hallucinations, and high flight risk (she tries to leave). This is all utterly heartbreaking since sometimes she is still there, really there. So this is a long road. But you are getting a lot of good advice here that will help you along the way.

housefinch

Maybe reading about loss of executive functions in dementia will be useful for you. It’s part of the progression for her to lose interest in activities and socializing and not initiate activities. For staff at MC, it might be a big ask to expect them to initiate and convince your mom to engage in these activities in another wing of the facility. If she cannot understand the steps of a game without a 1:1 aide and verbal or physical prompting, that will require a staff member to assist her to participate. Or if one cannot be spared, it puts the onus on less affected AL residents to see her deficits and accommodate them so she can participate. I’m saying this from a place of kindness and compassion because I have a disabled child who requires that type of support to participate in similar activities with typically developing peers at school. It’s both emotionally painful and not necessarily obvious to recognize these deficits in someone who can still chat superficially.

momislife

Thanks for sharing your story here. I completely understand how you feel. Mom has been in MC for a year since my dad passed. It was hearbreaking to leave her at AL but she needed the daily care. Even though she can still dress herself, go to the bathroom and eat with others she throws a fit getting a shower from the aides. We have a camera in her room and I see her packing and unpacking her belongings so we keep minimal things in the room. She is talkative but I don't think the aides really push her to do activities. Just like you I try to fly in once a month to visit her and take her out of the facility to do things. My siblings live closer but when they visit they don't take her out of the facility and do things like shop or church which I think would really help. As her only daughter, I feel so guilty not living close enough to visit more often.

I feel torn if I should move her to a facility closer to where I live, so I can see her more often rather than being in a limited position. But I have a family and I'm not sure if I could handle all the additional stress. The anxiety of what to do next is hurting me.