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Same problems, different place
I finally convinced mom (87 yrs old) that an assisted living center would be a great alternative to her living alone in a 400 sq. ft. cottage on our rural property. Dad died suddenly 2 years ago and I moved her down here without any prior knowledge that she was in early dementia. She loved the cottage, but her dementia and isolation was causing delusions and wild hallucinations. Her lack of balance was terribly worrisome since we have no way of installing remote cameras with our rural internet service and she refuses to use walkers. She's had 2 trips to the ER within 2 weeks which required stitches in her head and many other falls not requiring professional medical intervention. She also quit trying to prepare meals for herself because she does not remember how to operate the kitchen equipment - except to set the dish towels on fire. Although when questioned she would say she made her meals. She didn't know what she had eaten and there was no evidence of anything cooked or eaten. In addition to my new duty of preparing all her meals, my stress level has sky-rocketed because I never know if she is laying in a pool of blood from her latest (and not remembered) fall and injury. I found her, immobile, on the floor during one morning visit and her tales of hallucinations during her night on the floor would have made a great horror story. I felt so bad for her, but she still insists she wants her "privacy and independence". I pay for one of the emergency alert systems which she absolutely refuses to use. It has fall-detection and everything, but she sees no need for it since she doesn't realize she has any problems. I work at a (fortunately) part-time job with a very understanding boss and my husband is severely disabled with back problems and chronic, uncontrollable pain, so my available time is limited. In our rural area, home-health care looks sketchy, at best. I've never read a good review of that prospect in our area. I'm not going to waste limited resources for that.
After a few heart-to-heart and heated discussions, we agreed that she would move to a nice big apartment in an AL center about 10 miles from my home. She visited and approved the facility. Mom has the resources to afford this for a few years, then we will take over the financial responsibility. The apartment is as big as her cottage, so she lacks for nothing, except the full kitchen, which she couldn't use anyway. We bought her new furniture to supplement her existing furniture and took a couple weeks to outfit it with all her pictures and favorite stuff. The stress of the moving day (12/1/18) was high, but she was right on board with helping everyone and was in a good mood. When all furniture was in place and boxes were ready to be unpacked, she warmed up to the unpacking and organizing procedure. I was soooo happy that things were going well. I spent about 7 hours with her that day getting things sorted out and properly placed. I had a warm fuzzy feeling about the whole thing. I escorted her to the dining area for her dinner, then she released me to go home. Then, the next day happened..........dementia is back with a vengeance.
Today turned out horrible. I showed up at the scheduled time of 9:30 to take her to church. One of the aids told me that she did join them for breakfast. When I visited her, she chided me for missing breakfast and told me what a great meal I missed. I explained that I'm not included in the breakfast club so she accepted that. She decided that she was tired and didn't want to join me for our church service. I stayed with her for 30 minutes to make sure everything was OK, which it was, then I went to church. I told her I would be visiting her mid-afternoon to hang some more pictures & etc... What a surprise when I got there.
I asked her if she enjoyed her lunch. She said she did not go to lunch because she was busy. (none of the weekend aids could confirm the lunch attendance). She was in the process of un-doing everything that had been done. Packing clothes and keepsakes in any available box and ready to move out. She didn't have any destination in mind, but just knew she couldn't leave all her stuff there when she moved out. I could not distract her in any way from her goal of packing up her belongings and leaving. I just tried to keep up with her by unpacking all the boxes she had packed. She was so focused on packing that she didn't notice that I was unpacking. I kept trying to impress upon her that this was her new apartment and she was staying here. Then one of the aids came to escort her to dinner. I encouraged her to go and she did. While she was gone, I fast-tracked the unpacking and hanging favorite Christmas decoration all over the place. When she got back, it seemed that the dinner distraction was successful. We watched a bit of TV, then I went out for a 5 minute break in the cool air. When I got back, she was in full re-packing mode to move out - still no destination in mind.
I should be ashamed of myself, but I told her that if she continued her packing with intention of moving out, she may be moved to an MC facility where she will be locked in with no privacy and independence. I just don't know what to do or say now. I'm terrified of what tomorrow will bring.
She's safe. She's fine.
Try not to get so invested in "how she is doing" from visit to visit, day to day. She IS going to have good days. She's going to have bad days. It's a tough disease. She's going to be confused and distressed sometimes and you're not always going to be able to fix it.
Validate her concerns - I know this is tough mom, I know you want to leave - and either distract her "lets go see if they have an dessert and then we can come back and pack up the rest of your stuff" or go along with it, "oh ok, you're going to pack up your dresser, ok, do you need another box?" What will give her the most peace in the moment? Try that. It's usually not long explanations trying to convince her of why she needs to be there, "but don't you remember, you agreed this was best, you were so excited yesterday." She lives day to day now, and so do you.
So she packed up her stuff. Does her room need to be all unpacked? If she continuously packs boxes that someone can unpack later... so what? Make sure your need to have it all unpacked and decorated is what she actually wants. In the moment, she wants to pack a box. So let her pack a box.
Try to let go of trying to impress on/convince/explain things. It doesn't really work, and even if you get the satisfaction that she agrees with you in the moment, she won't remember it and will disagree the next day. She wants to go home. This is not going to change, no matter what you say. You won't convince her this is where she needs to be.
Just be with her today. Visit with her today. Sit with her while she packs boxes and try to distract her. She may just need some time to settle in. She may forget about it. This might be her new hobby.
It's ok. It's all ok. She actually sounds like she is doing pretty good.
Visit her. Eat with her. Hold her hand. Watch TV. Talk to her and she what she says. When my FIL got focused on leaving, we would have long "conversations" about where he wanted to go. A"nd what will you do when you get there? When was the last time you were there? Not today, though - you'll stay here for now, but maybe next week". Its not like he was going to say in a week "you said you'd take me home this week" and even if he did, we would say, "oh this week's not good, it's not ready yet, next week. what do you think is for lunch today, lets go take a walk around the floor."
Good luck. This transition was very bumpy for us, but we got through it because it was the only option on the table. My FIL hated it - called us begging to come home, spent his entire time in MC trying to find a way out, it was the saddest thing you've ever seen. It happened. We made it through. You will too, I promise.
Thank you for your good advice. I had gotten fairly proficient at redirecting her focus when she was in the cottage. I suppose I thought everything would be perfect when she moved in to the AL apartment, DUH.
Does anyone have any input on whether or not I should visit her each day. Since I've been the primary caregiver, I get all her bad moods dumped on me. Should I send my husband, neighbor, church friends, etc... in my stead for awhile? Perhaps if she sees other familiar faces there, she won't be so focused on leaving ?
Remove the boxes - then she cannot pack them repeatedly.
Don't "threaten" her with MC. She won't remember and this will be an ineffective way to change her behavior.
My mom did this too when she moved to an AL. It didn't last long, but she was under the impression she was in a hotel and that I was going to be bringing her back home at some time. I think she just wanted to be ready. After reading your story, I hate to be blunt, but it does sound like AL may not be the proper fit for your mom.
In AL, they expect you to only be "assisted" with a task or two. This means they will help with medication, help you bath and possibly remind you to eat. They also do not check on the residents often enough (unless you are paying extra) to avoid falls, etc.
Both AL communities that my mom lived in never just brought her to meals or brought her to activities. When I finally moved my mom to an MC, her needs were met without me having to constantly be checking on everything. Yes, I still had to be around, but I didn't have to worry that she was eating, participating in the music program, etc. The ALs where I live will let the residents sit in their rooms or in front of a TV all day. The MCs just tell them "we are all doing XYZ now" instead of "would you like to do XYZ?" and that answer is typically no.
Welcome to our world, Janice. I'm so glad you found our site.
re: visits. My FIL didn't seem to notice our presence that much (stage 6) and we would often agitate him. We kept our visits pretty frequent and short - 15 minute checking in, how are you, check in with caregivers about how things were going, ok dad good to see you we'll be back later.
Other people visiting is a great idea too. If he likes visitors.
Sounds like a situation that commonly occurs - by the time Mom is "bad enough" or by the time we are able to enact change, Mom is hanging on to Assisted Living status by her fingertips and the time in AL is extremely short - because, "bad enough" means Memory Care.
Good advice is that placement needs to be according to care needs (what you describe is far beyond assisted living), or, in other words, place for the worst day, not the best.
Right now, see if additional services can be layered into AL (staff escort to meals, recording of meal attendance) and a few room checks a day. Meanwhile, step up your search for MC.
Don't discuss or threaten Mom, because she cannot process the information to approve or dissapprove. You are her decision maker. Care needs drive the decision making.
Don't beat yourself up. A very common occurance.
Her behaviors sound typical for PWD-they often want to "go home". We have had many postings here about people packing up in AL or MC. It will pass in time. What concerns me is that no one could tell you if she ate lunch or not. It sounds like she might do better in a memory care facility-one where the staff are all trained to accommodate seniors with dementia. Most AL will not permit someone with advancing dementia to stay for long anyways- at least not without adding private caregivers hours to manage the person during sundowning.
I have seen MC where the rooms are double occupancy but there is a wall between the roommates and they only shared a bathroom. Sometimes it works well if the 2 people can connect-if they do not-family can ask for a room change.
Try not to let her behaviors upset you. Please realize she is doing the best she can-that she has a real brain disease and imagine what it is doing to her behaviors and feelings. If she has always been an appreciative and kind person before the disease-please don't take anything she says or does now personally. She is still the same mother you have always known in her soul. Good luck.