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We moved mother-in-law to AL and now she's worse
I've been reading on this board for a couple of months now and it really does help to know I'm not alone. I feel like I could write a book on what we (my husband and I) have dealt with this past year with his mother. Soooooo much has happened and it's just crazy.
My question right now is this: has anyone else experienced their parent getting worse after moving them to Assisted Living?
My MIL lived alone at home for the past year with alzheimer's and she is legally blind. Yes, it was stressful and a huge challenge. Thank God for great caregivers.
We moved her to Assisted Living on October 2 and that was brutal. Lots of crying and guilt. It's been 3 1/2 weeks and the guilt is still with us.
We moved her telephone from her home to her new room at AL. On day one she could no longer answer the telephone. It's the same phone with the same sounding ring. What happened?
And the biggest shock is that when she lived at home, she knew where her bathroom was and would always get to the bathroom. Now that she's in AL, she can't find the bathroom so she's wetting her pants and her bed. What is the point of being in AL if they aren't going to ASSIST her to get to the bathroom? I'm pretty upset about this right now. I feel like moving her back home and re-hiring the caregivers and adding 24/7 care instead of just daytime care.
I feel like I'm going to be sick. I have a headache. This whole thing is so upsetting. I've called her almost every day since she's been there and she can't articulate what's going on so I have no one to tell me what's really going on there. At least when she was at home, I had cameras and could see what was happening and I had really good caregivers who would tell me the truth. I think these AL places just want the money and the night shift is useless. When the day shift goes home at 5pm, they just want to put the residents to bed and have a relaxing night. I miss my nightly 7 or 8pm call with my MIL. She can't seem to answer the phone in her room and the staff doesn't want to be bothered to go help her and they like to say "she's in bed" or "she's asleep" when I call the main number. SO WHAT! WAKE HER UP! It's only 7pm, for crying out loud. Plus, she told me last night when I called that she wants to be woken up if I call.
I'm wondering if we picked the wrong Assisted Living Facility. It was supposed to be like a "home" but it's not. It feels like a jail. If I were to call my MIL when she was at her own home, she would take the call no matter what time of day it was. Now she is restricted. I don't like that.
Thanks for listening.
I might ask for a meeting with the facility director to discuss your concerns. I'd ask to agree on a time that you call your MIL on the phone to speak in the evenings. Does the facility have a phone that you may call to speak with her? I'd reserve judgment on them not being responsible for answering her room phone. Your mother may no longer have the initiative to answer the phone. I learned that with dementia, the PWD may see a sign, but, not think to read it. They may hear the ring, but, not think to answer the phone. It's a part of the progression. Maybe, if you called the facility number, they could get her to the phone.
I'd also wonder if she is developing incontinence too. When my LO first went into AL, she had been living alone, with my help for a short time, but, when she got into AL, I saw just how she was struggling. The facility did not create the progression, but, they did happen while she was there. Soon, the level of care that she needed was too great and I had to move her to MC.
I'd read a lot about the progression of dementia and how there is really nothing a family member can do to prevent it. Sadly, losing the ability to communicate, describe things, and verbalize is affected. Eventually, my LO was not able to have any phone conversations.
If you're not comfortable with the care at the AL, I might ask for another assessment to see if they can meet her needs still. Most ALs that I know of are not equipped to manage the care of someone with significant dementia and that makes the resident quite uneasy. When my LO was moved to MC, I saw an immediate improvement.
I agree with what everyone else is saying about her more likely needing more care. I did the same - placed Mom in AL and worked my butt off to keep her there. I didn't realize at the time that she should have been placed in MC. Now that she has extra support, she's so much happier.
On another note, 3 1/2 weeks is not a long time! She will need more time to adjust to the new routines. In the interim, you might want to add some additional support - more visits, hired companions / care aides etc. PWD need this additional time to familiarize themselves. As well, the stress of the move most likely caused her to regress. My mother did with each move but did get her bearings back.
Because of their cognitive issues, PWD rely on 'muscle memory' for routine tasks - just like when we re-organize the kitchen but keep going back to the old cupboard for our mug. It's not that we don't know - muscle memory is at work.
If you move your MIL back to her home, she will most likely display the same behaviors that she is displaying now. She won't pick up from where she left off. She will need to relearn where the bathroom is once again.
And by the way, in your nicest voice, ask that she be woken up at 7PM to talk on the phone - or go visit several times at that time to see if she's actually sleeping.
I know it's hard. Oh my, you sound like I did a few years ago. When I moved my mother to MC I researched different facilities like crazy. I phoned people to ask their opinion, I visited several times, I spoke to the managers in each department and labored over the decision. I didn't get it right twice so I wanted to be sure I got the right one this time. I felt confident with my decision (after weeks of deliberating!) and it has been great.
Have hope, there are better days ahead...
Barbara, you moved MIL on the first anniversary of Mom's move from AL to MC (in a whole new city to boot).
Mom's AL was one of two choices for her, and she chose it herself, when sis said she could no longer run two households in addition to working full-time. She was early stages then but physically active, mentally and emotionally sound, except for those executive function things. Her decline was almost immediate bc she caught her heel in the carpet pile while stepping backwards, and fell hard onto her keister. ER, fractured lumbar vertebra, truly nasty and ill-fitting cage-like back brace, here's your brand new walker and don't dare take a step without it. It was AWFUL. I visited monthly long distance, and bro scheduled work trips with long layovers there. Sis, who'd had Mom under her wing for lo those 20 years since Dad died, visited once a week and did that first ER run (which she declared her last. I do not blame her one bit. She'd racked up an impressive amount of medical time with Mom over 20 years.)
Mom was at that Lutheran Care Network AL for two years. To qualify for entrance, two ADLs were chosen that she "needed assistance" with. These were, meds and bathing. The place had no severely impaired memory patients, and no behavior issues that I ever saw. As Mom's needs grew, the care grew with it. The carers were stellar even though the place stank of stale urine no matter how often they tried to clean the carpet. It took her most of a year to adjust
But her decline was steady. Slow but steady. She might still be there it if weren't for bro and I deciding that long-distance hospital care was killing us (literally, in my case). We moved her to my city, to a facility that offers a continuum of care at a fixed price, and is very small (60 max and we're down considerably from that) which is what she was used to. Another instant decline, more sobbing and recriminations. Adjustment went more quickly here.
In Mom's case, the move to AL was the correct one for her at the time. She did become content, and was a staff favorite for her sweet and gentle gratitude. When she moved last October 2 to this MC, she was the highest functioning person her age (almost 91). Now she is in the average range. Her decline is a fluctuating thing, and we are currently seeing a rally in language. Who knows what that means. She's late stages, could walk if they let her (FALL RISK FALL RISK RED ALERT), doubly continent because good girls don't wet themselves, is said to do a pretty good job feeding herself in the dining room, eats finger foods easily with me, and has very deep discussions with me that show she's preparing for dying. Someday! Not today! Will you come home with me? Arrgh....
This MC is not crème de la crème, but the caregivers, limited as they are by severe under-staffing and a whole new set of rules which apparently include "thou shalt show no affectionate hugs", are as good as they come.
Long story, sorry!
Some ALs have more flexibility than others in terms of what they will help with and the accommodations they will make for dementia, but generally it is not enough for a PWD unless they are in the early phases of the disease. Just another gentle suggestion to consider memory care. If they claim they do offer memory care, it sounds like you may need to move her as they aren't living up to expectations. A big difference is in MC the staff are (or should be) trained in dementia. They are used to the person needing more prompting, helping them make calls, and assisting in the bathroom would not phase them one bit. They would not expect 6 pm to be quiet time, rather they would be busy keeping residents entertained, helping them get ready for bed, and a variety of other tasks. AL would not be staffed to the same level where they could give an individual as much one on one time as MC would. I know it's a much harder pill to swallow. AL seems so much better and you would think the independence would be better. But many times that logic doesn't work with dementia. They do better with more support. Being out of her environment will set her back, which is normal and may be temporary, but in MC she would have the care she needed to get through it.
The adjustment period may be longer than 3.5 weeks and very difficult. I know the guilt you speak of. But sometimes that's just what has to happen. Good luck, it is a difficult time I know.
Unless this AL is one that advertises itself for high acuity care need patients (rare), you placed at the wrong level. Not an uncommon mistake. But it's not the facilities fault if MIL requires a higher staff ratio (1:10 or 1:8) dementia specific staff, and adaptations to meet her visual impairment and very significant cognitive impairment (you say she can't tell you anything).
By description, she sounds way, way beyond the care needs of Assisted Living.
Family members often wait until someone is 'bad enough' to move; meaning, the person is moved on the threshold of another decline, so it's not the move that caused it, it was coming anyway, and now they are additionally challenged with a new surrounding that anyone needs time for.
Get out there, find a Memory Care, preferably at a facility that also has a good nursing home attached for a financially sound game plan for when the disease progresses.
No good facility is going to wake a resident with dementia for the convenience of a relatives traditional phone call. Be flexible with this. Dementia wrecks havoc with circadian rhythyms.
Get her at an appropriate care level, then give it time to work out caregiving adjustments.
Too many people place at Memory Care level and expect staff to have all the at home care problems worked out withing days. Bathing refusal, incontinence, establishing a reassuring routine, recognizing caregivers, establishing effective patterns of communication with family members - it takes time.
They call themselves an Assisted Living Facility covering Independent Living, Assisted Living, Nursing Care, Memory Care, Respite Stay, Adult Day Care, and Hospice.
All I know is she was fine at home with being able to answer the phone whenever it rang and she always found her way to the bathroom. The day we moved her, she seems to have forgotten how to answer the phone and go to the bathroom. I don't know what's true and what's not true because I am living 1,000 miles away. I assumed, probably incorrectly, that the LNA's at the facility would ask her if she had to use the bathroom and would direct her to the bathroom since it's a new environment for her and she is blind and can't find her way. I find it hard to believe that she lost her ability to pull down her pants and go pee the day she walked in their door. If she's not saying to them "I need to use the bathroom" then wouldn't it be safe to expect that they would be asking her every few hours if she has to use the bathroom? They knew she was vision impaired and had alzheimer's before they accepted her into the facility.
We don't know what to do now. Move her back home and try to hire 24/7 caregivers or find a different facility. I think either of those options is going to be stressful for her and for us and very difficult because we are so far away. We are the only living relatives that she has.
You're probably right. She probably should be in a MC facility and we may just have to move her again. The problem is, we live 1,000 miles away and there is no other family alive. We can't just drive there to check on her. We have been agonizing over this whole situation for the past 13 months when her live-in boyfriend passed away. That left her alone with her blindness and the dementia got progressively worse. We started with a caregiver 3 days per week for 2 hours per day and gradually increased to 5 days and then in July we added weekends. I was up there visiting her in July/August and realized how much worse she had gotten so we got her a new doctor and he agreed with us that she needed 24/7 care. We added 8 hours per day, 7 days per week. All of this was against her wishes so everything was a battle. I should also add that we had cameras installed in her house so we could keep an eye on her when the caregivers were not there. It was brutal to watch her decline. The last week of September was so bad that my husband took time off work, drove up there, visited a facility on Monday, they called him on Tuesday and said she could move in, and he moved her on Wednesday, Oct 2. Now here we are, 3 weeks later, and she can't answer the telephone in her bedroom like she did when at home and she can't find the bathroom like she did when at home. We both feel extremely guilty and we don't know if we did the right thing in moving her. We were concerned for her safety at home when the caregivers left at 8pm. We couldn't find anyone to stay at night and it was a money issue, etc. Now we are paying more but she is safe. We still have her house and everything is still turned on so we technically could move her back home but then the stress of watching the cameras starts all over again. Sorry to sound like I'm going in a circle. That's how it feels. Thanks to everyone here for listening and for the advice and tips.
Unless they have someone with her at all times, then she isn't getting the care that she needs. If she needs someone to take her to the bathroom because she's in a new place, then she needs to be in a place where there is always staff to help her. She also may be unable to learn where her new bathroom is, so that's another challenge.
Barbara, Mom turned 92 while we weren't watching! Still mostly her sweet self, but deals with frustration less easily, which they at MC are pleased to call "having behaviors". Sigh.
You are in an awful position, right where we were 18 months ago. Mom had embedded herself into her church and village life since Dad died in 1997. She had (still has) loads of dear and close friends, whom she saw probably 6-8 times a month while in AL. We had to either kill ourselves or rip her out of her loving, warm environment. There is not really a winner in our situation, except that when she had an emergency hip replacement a few months ago, sometimes I got to go home to my own(not a hotel) bed.
Her stage of swearing that friends and sis would take care of her (after she had walked back tk where she came from....) only lasted a couple of months. Said friends cannot physically help her, but if they lived here you bet they'd visit! Alas. They live 600 miles away.
I hope that you will find yourself a workable solution, despite the whole new round of stress that will come to pass. Hugs!
You've received many great responses to your post. I'll just add my experience. I moved my mom to AL when she was in mid-stage dementia, still performing most of her ADL's, but not cooking anymore. She was somewhat on board with the move and the director assured me that they deal with many dementia patients, although it was not a transitional type of facility. Got her a lovely apartment and placed most of her possessions there. Moving day was great, mom helped out to the extent she could, set up her things and seemed excited. But, the next day was like a different planet. She was confused and frantically re-packing her belongings to get the he** out of there. She steadily went down-hill all week although the staff gave her extra attention and we started home health care immediately. Couldn't answer the phone, stopped using the bathroom, wouldn't shower, became non-verbal. HHC tested for UTI & other medical causes, but found none. After nine days, she fell and sustained a displaced fracture of the femur. Classic story - that was the beginning of the end. She passed away 4 months later in a SNF.
Obviously the time for AL had passed, but, I didn't know enough about dementia to realize that. The change of surroundings was something her diminished brain just could not handle. And the AL staff was NOT prepared to handle the situation. Had I only known.
Every situation is different and I cant tell you what to do but after a crisis/medical incident with my father in January, it finally became apparent to us that my father was indeed declining and was no longer able to safely live at home any longer. I found a wonderful AL - vibrant, beautiful, clean, great food, tons of activities, happy residents, friendly staff - and moved him in with the highest of hopes. He hated it and wanted to go home. At the time I was even honest with him about the cost (which caused my frugal father anxiety over the cost) and at the time I was against medications (because I didn't realize what I was up against). One and a half months later, when he didn't show up in the dining room for breakfast the staff found him wandering in the parking lot looking for his car because 'he had to go to work'. I got a call from AL, they couldn't be sure how long he was outside, but that they were going to get him a full time 24/7 private care giver at $30 an hour until I could find another facility for him as his needs exceeded what they could provide and he was a liability to them. This sent us into panic mode of trying to find MC while the clock was ticking and money was wasting.
Two weeks later, we had him on Zoloft, told him that insurance was paying for the 'new place' and moved him into a MC closer to my sisters home. He hates this place also. But now, seven months later he is finally settling in and he no longer remembers his home or that he once had a car or his independence and is doing as well as we realistically can hope for, for now. I will always feel guilty for basically drugging him and locking him up, but he is now safe and his needs are being met in an appropriate manner for his current and progressing and worsening condition.
You are doing the best you can and this kind of thing usually involves a lot of trial and error but in time you will find the best, safest option for your MIL so go easy on yourself, think things through and you will find the answer and the best place for both for her, and for you and your husband.
This is going to make a big difference. My mom was stage 4 when she went into the AL. She had a rough go in the beginning, but seemed to settle soon thereafter. Her first AL was really just assisted in that they could assist, but not really guide. When my mom had a stroke and was confined to a wheel chair and couldn't use her dominant hand any longer, that is when things got messy.
Alz or dementia, combined with a disability, is difficult in so many ways. My mom couldn't recall that she couldn't walk and soon thereafter broke her ankle in a fall. Things got so complicated I had to move her to higher care. I don't think this is uncommon. Also, my mom was fully functional in the restroom, but her disability of the stroke and not being able to push the button on her pendant for help, made the scheduled toileting very important.
Only a higher care place can do this. When my mom soiled herself a few times at the last AL (it was our second), it was apparent that an MC was the final move. MC had such a different way of guiding the resident through meals, toileting and activities that mom's last year of life was so much better for both of us.
Barbara, there is so much spot on advice here. I will add a little of our story - we too had a mom who declined significantly we moved her to memory care. It was night and day difference of dementia suck within a few days. We live close so daily I worked with the administration, the attendants, the cook, night shift/day shift folks, was an overachieving proactive advocate for Mom. After five weeks we called it quits with the MC, brought Mom back home, and eventually hired p/t live-in for 4 days a week, so my sister and I could continue to care for Mom, just relieve ourselves of the 24/7 every day of the week.
That's our story, and does not work for everyone. But what I discovered in going through that hell was that I know my mom and our family's situation better than anybody else. I had a choice with all options being kinda wrong and kinda right. I learned that as a family caregiver, when something ain't working I need to back off, look at the situation from a different angle, and try something else. For us, bringing her home was the right choice, although much of the dementia progression she experienced in MC followed her here. I also know if our home situation changes, my sister and I will reassess and potentially try MC again.
So, have faith in yourself and what you know about your mom and family, and make the best decision you can with the information you're working with now. Because if it ain't working, you are a caregiver! You can fix it. (Eventually...) Best of luck to you all.