Two Months at Memory Care/Assisted Living and Suddenly Showing More Confusion

DotBern

Hello, 

My mom has vascular dementia mixed with Alzheimer's. She is high functioning however does get confused with where she is and time. She is independent in many ways with showering, eating and toileting. She went to this Memory Care facility unwillingly but once arrived and became involved with activities she enjoyed and met a couple of other women that were also high functioning she thoroughly enjoys living there. Lately, she feels like she is in a hotel, each night she calls to tell me she took a room in this nice place after being "out" all day with friends. Some friends went "home" and others were also getting a room. She finds it strange that her apt, looks like the same as her "house". She had her things packed into trash bags the other day and wanted me to take her and them back to her house. I tried to explain she is in her house and her home is being sold (she agreed to sell it to a relative). She asks how she got where she is and has no knowledge its been 2 months. She is becoming agitated and once again blaming me for her ending up there. I'm not sure how to handle this. Just when I think she'll forget by morning, she calls to tell me to bring a large bag so she can take her things home. I'm taking her for a manicure and lunch offsite today and worried, we will "get into" the discussion once again. It's so difficult because my mom is "with it" for the most part but her mind is definitely confusing her. I try to change the subject and sometimes that works. Today she had no idea why she was there and was determined to find her friend to see if she was going home too. She had no idea where the dining room was. I told her that a staff member would be coming shortly to give her daily meds and to show her where the dining room was and that I would be up later to go out for the afternoon. I left a message about an hour ago at the nurses station seeking help and wondering what has changed. Although some confusion has been present throughout her stay, she will normally accept my responses and go about her day. Anyone else have a similar situation after moving a LO to another place? I thought by now she would be settled. She seemed to settle in after a few days and now two months later is questioning everything and doesn't believe she's been there for 2 months. Thank you in advance for any insight. I will also search for similar topics within the forum. 

Beauchene105

Hi Dot, relating to my own experience with my mom, your mom is experiencing similar decline. Every timeline with this awful disease is so different. It sounds like your mom is having a period of acceleration. My mom has thought she was in a hotel, taken prisoner, etc. off and on for years. It's so hard to watch happen.

Phoenix1966

This must be very difficult for you, because there is no rhyme or reason with this disease. 

If I were in your shoes, I would not take her for anymore outings from the facility. I know you are trying to make it as pleasant as possible for your LO, but this may simply be adding to her confusion. I would also stop telling her that her house is about to be(or already is) sold. Try the many fiblets that folks here use when she asks to go back, such as the house needed some serious repair work, there was a gas leak in the neighborhood, etc. “Remind” her that she’s on holiday and still has another week that she paid for. You could also try saying that the facility is a fancy rehab prescribed by her doctor for whatever condition she might believe and tell her as soon as the doctor clears her, she can go home. Or try placating her with a promise of returning tomorrow(or in a few days) if that redirection might work. Just keep changing it up as needed, which is easier said than done since most of us find lying uncomfortable at the very least. 

Stay strong and remind yourself as needed that your mom is in the safest place she can be right now. 

Suzzin

Have they checked her for a UTI? A sudden change can often be caused by a UTI which doesn't have the usual symptoms.

*Ollie*

Your post is similar to my post about a PWD suddenly showing more confusion and wondering about the cause.   My mom lives with us and we are seeing that here.  Is it due to a reversible problem like a UTI or the disease progressing more rapidly.?  

I don't have the answer and am trying to figure it out by eliminating physical issues like a UTI and will have a full blood panel run on her.  Beyond that, I'm not sure.  

CarolynATL

I'm so sorry to hear this.  Sounds similar to my dad's experience first moving into AL, then transitioning to MC.  He would frequently ask me where he was, pack his things and tell me he's leaving. He would pack and unpack in the same day (including his cat one time).  One thing that helped me was to meet him where he was (mentally).  When he asked about leaving, I'd tell him I'll bring the car tomorrow, or he's staying while his plumbing is being fixed, we're at a hotel for the night.  Fibs like these seemed to re-direct him at least for a bit and we avoided an argument. 

At some point in the future you might consider not taking her out.  This was really hard for me as my dad's favorite places to go were the library and out to eat, but I noticed he would be more anxious and agitated during and after we returned.  It seemed that a change in place or routine affected him rather than giving him enjoyment. 

I hope this is helpful.  Best wishes to you.

Iris L.

IMO, PWDs need to live in a bubble.  They need a bubble to feel secure because their minds cannot handle changes. 

Iris

Anonymousjpl123

I moved my mom to AL / MC in November and the first couple of months were very very hard. I felt sick like maybe the move (she moved to a different state) made her worse because she was so disoriented in the beginning. Throughout the move process she kept asking me “where am I moving?” And I mean she was asking what city. She was moving to. She stayed with me for 2 nights before the actual move in and thought it was her house of 40 years. After she moved in, she would say “where do I live now?” It all felt horrible. Then, little by little, week by week, she adjusted. In her case, she is doing fantastic now. She had friends who’s she has meals with and although she isn’t so interested in the activities she reads, watches tv, and we (family) are in touch a lot. My sister and I were just talking tonight about how every month she seems a little more comfortable

VERY IMPORTANT: her being happier and more comfortable means exactly that. She genuinely is happier. But her memory has not improved.  She has good and bad days, but the decline has continued. I was so eager for a formal diagnosis and I now realize it doesn’t matter. The cognitive function won’t come back. that said, she, gets up every morning and takes care of herself, loves the food and friends she shares meals with, and I’m thrilled. 

So for your mom: try to have patience and realize she genuinely doesn’t understand where she is living and that’s ok. Last weekend,  in front of her building my mom told someone “oh, I don’t live here.” Then a minute later she told me she forgot for a second that she did. I just acted like it was no big deal and could happen to anyone. For me, I find just saying something like “oh, you know mom, you actually do live here now” works when she is not in distress. Otherwise, you could say “you know mom you are living here now but your house is fine. Whatever works. What always helps for me is being very reassuring and supportive in those moments, and whatever I can say that will do that seems to me fair game.

Doctor checkups are always good to rule out something physical. 

With all of this said, I’m still very new to this but my mom’s first few weeks were rocky, then it was good for a month, then a rough patch, now she seems really good again. Your mom is safe and that is what matters. 

Butterfly02

Hi all, 

My husband and I, moved my MIL into a memory care facility a week ago and now she has swelling in her feet and legs. She has VD. The thing is she always had her feet elevated or propped up when she was living with us. She is still making urine however, she is incontinent. What I'm really trying to find out is why she's swelling so much now? I was thinking that maybe she didn't show these signs of swelling with us because she was always told to elevate her legs. It's just bothersome to see this happen to her since we placed her into a MC facility. She is also finding it difficult to get up from a seated position now. I'm looking for some answers because she was placed on hospice and she is under a DNR order however, I didn't think that they would just let things happen medically to her without running labs or trying to prevent something if it arise. I suggested that they give her a diuretic but nothing has been done yet. I really want them to run labs but it seems like there is no rush from the facility or hospice. I also noticed when she was living with us that she would get out of breath really quickly when she had assisted showers from me. I did most of the work but she was always out of breath just by putting on a shirt or brushing her teeth. I literally did most of the work. Just need some clarification and guidance.

Thanks...&gt

DotBern

Thanks for responding. Yes, my mom has also told friends on the phone that she's in a hotel. It's the saddest disease ever. I sit back and watch her decline. I did have her checked for UTI, she was fine. I also think taking her out less is probably helpful but she does so enjoy going out. We get a mani/pedi together and I'll take her to lunch on occasion but some of you have answered stating they get confused when the go out. I agree. She does seem to get agitated when she returns. It's like she needs to get back into her routine and is worried about it. The staff told me she works very hard to hide her deficits. It breaks my heart to hear this. But I can imagine she does. 

Thank you all for your responses and supportive words. They have all helped. Love this group! 

DebF1949

We are going through a very similar situation with my MIL.  When her daughter died about 3 years ago, my husband (her son) and I had to move her from Arizona to Minnesota so that we could care for her as there was no family left in AZ.  She has been in an AL facility for the past 2.5 years and has become increasingly confused as time has gone by.  This past month she has shown a rapid decline.  She insists that she hasn't been here more than a few weeks.   Some days she insists that the building has been moved.  Everything looks the same but it is a new building.  She can't figure out how they manage to move everything and keep it looking exactly the same.  Other days she goes to the front office and wants to "check out" of the hotel.  Yesterday, at a doctor's appointment where we had her tested to see if some type of infection was causing the confusion she explained to the doctor that she doesn't live here, she is just visiting from Detroit (she hasn't lived in Detroit for 40+ years but it is where she grew up.)   Her test results were all negative.  Recently she has made multiple attempts to leave the building unescorted.  Fortunately she has been stopped each time.  However, yesterday she tried at least 5 times and the staff have insisted on moving her into MC immediately.  We had discussed moving her sometime in the near future, but given her current state of mind we are having to move her immediately.  I know she will be exceptionally upset by this move but it is not safe for her to remain in the AL facility.  The next few weeks will be very difficult for everyone.  So, I understand to some degree what you are going through.  The best advice we've gotten is to meet your LO where they are.  Trying to reason with her will only upset both of you.  When my MIL wants to know where her father is, we tell her he went out with his friends to go bowling.  She often asks where the children are, and we tell her that they went home with their parents but will visit again later.  I don't know if this helps.  Good luck.  It is a hard road.

DotBern

Hello DebF1949,

So much of what you state is a reflection of my own mom. Her decline has increased and is being seen by a NP that is certified in dementia care and partners with the MC facility she is in. Fingers crossed she finds the right concoction of meds that may help alleviate her stressors and anxiety. She is now showing signs of sundowners.

How has your MIL coped with the new move to MC? Hopefully it gives you peace of mind considering her safety and she has settled into her new space by now. Change is definitely a stressor but sometimes is unavoidable. Reasoning does upset us both. I keep asking Him for strength in helping me to find more ways to live in her world. Not always easy when she is often very direct and can leave me speechless!

I do try to meet my mom in her world but I notice she is more of a phony with the staff. All I hear is how pleasant she is, how happy she is, yet when I visit, she argues with me. Tells me she hates it there, she doesn't live there, blah, blah, blah. A recent phone call from her ended badly. She was insisting she doesn't live there and I needed to take her home. I nicely tried to reassure her that she is living safely and the staff is there to help. After some additional nastiness, I simple stated that I had to hang up that she needed to calm down and talk to the staff and abruptly hung up. I immediately called the nurse and asked them to give her an anti anxiety pill and was told she settled down after awhile. I went to see her after a 2 day break and she had taken down my written poem framed and given to her on her 70th birthday. The frame was destroyed, the poem was tossed behind the dresser. I said nothing and did nothing but boy or boy does it hurt. The guilt kills me.

I'm hoping your MIL has settled in and you continue to find the strength needed for this journey. Thanks for sharing.

M1

Dot, just know you are not alone in this. I am a trigger for my partner and when I go to visit her in MC I have to have someone with me, else it is all negative, all the time, she just wants to be with me and doesn't understand why she can't come home with me, and will not be redirected. She is unfailingly sweet to the staff and likes most of them (no so the other residents). I don't know that it's "Phony" so much as she just doesn't have the emotional investment in them that she has in me. Very difficult, and sad to say it has not gotten better although she has now been there a full year. I would spend much more time with her if she would tolerate it, but she doesn't, so it's a self-fulfilling prophecy.

Shan

Dot, I’m at about the same stage in this journey with my mom as you are with yours and I’m experiencing very similar situations, and I’m so sorry you are going through this too. My mom moved into MC from AL just over 2 months ago. She didn’t go willingly, in fact we didn’t even tell her it was happening because we knew she would refuse and she could no longer safely stay in AL. One sister took her to her house for the day while me and another sister packed all of the belongings we needed to move for her, had movers lined up to do the move 2 hours after we started packing, and unpacked her and had her entire room set up complete with her favorite art and photos on the walls by the time the sister that was keeping her brought her to her new “home”. That sister decided on her own what the story would be for why she had to move and unfortunately it ended up being a tragic trigger mom can’t let go which has made her ability to settle in much more difficult. She told my mom that the owner of the apartment she was living in changed the rule about dogs living on the premise and she either has to give up her dog or move to a place that would let her keep him. I and my other sister that were in charge of the move had no idea this was the story until mom showed up a hysterical, crying mess, extremely distraught about being kicked out of her home because “the bad man hates her beloved dog”. Since that day, my mom still tells the story of getting kicked out of her home by the bad man, and the story has grown to a full on delusion of him physically throwing her out and keeping her stuff. She still cries when she tells the story. So I agree with the other comments that telling her her house is sold might be too harsh for her brain to process and compassionate fibs like the house is getting painted or repaired are much easier for her to take and won’t likely cause the same trauma as knowing her home is gone and she can never return.

With regard to your concern that your mom seemed to be settling in and then took a turn at about the two month mark, I also see that with my mom. Because her move I was traumatic it took her a little longer to start being ok with the move, I’d say about a month. The second month was much easier and it looked like we were getting through the worst of the transition. Now just over two months in and she’s getting difficult again. I’m getting several calls a day asking when I’m visiting. If I tell her I’ll be there for lunch then the calls really ramp up sometimes once every 5 minutes asking me if it’s lunch time yet. At that point I let the calls go to VM so I can try to concentrate on work, but by the time I get there she is an anxious, angry mom because I wouldn’t answer her calls. She’s been saying more often that she doesn’t think she can stay there any longer, and cries when as she out loud goes through the list of her daughters and who she thinks she might be able to live with. I, like you, am so hopeful this is not a permanent state and look forward to the day she can find peace in her home, but we are not there yet. I worry how long this stage lasts, and reading through other posts, I have noticed that for some it never completely ends until maybe the last stages of this terrible disease. I wish I had better advice and more hopeful prognoses to share with you, but at this point I can only commiserate with you and say you are not alone, I share your struggles, and hope that can bring you some comfort.