Hi everyone,First, thank you for all your conversations and I am sending you and your loved ones all the best as you navigate difficult and heartbreaking transitions and losses.
My 86 year old Mom with dementia is currently in her home, with a caregiver who is with her 24/7. There are two caregivers splitting the week's care, one stays 4 days the other 3 days. She also has another caregiver who comes by 3 days a week for about an hour for social interactions.
I live 4 hours away and her son lives 1.5 hours away. I visit now every other week for 3 days.
The caregivers provide all the support of ADL. They have an accent and can be hard for Mom to understand, and after about 3 months, Mom doesn't remember them although she accepts them. Mom is getting increasingly frail and has had a few falls, despite the constant attention. She does use a walker and canes.
One of the caregivers thinks Mom may do better in a facility. I am of the mind that being in her home of 37 years that is familiar is better for her at this stage.
I know there isn't exactly a "right answer" here, and everyone is different, but anyone have any thoughts or experience with making decisions about staying at home vs moving? Is there a compelling reason to move someone from their familiar home when they are getting by and safe?
I feel a move would be traumatic and she would be beyond confused and "gone" - even thought I could see her every day. My house is too small for her to move in with me with a caregiver here.
It's heartbreaking to see Mom decline. She can still recognize me and her friends but her short term memory is completely gone, so much so that me leaving the room and coming back seems to surprise here when I am there. She still calls and texts from her iPad.
I welcome your perspective and experience! Thank you! Lindsay
Not necessarily, no. It’s not true that home is always the best place. She needs more socialization and maybe activities. As this gets worse she is going to feel “gone” in her house too.
You say she is getting by and safe. Think of the future. She won’t be getting by much longer. She’ll need someone with eyes on her 24/7. And you would not believe how easy it is for an elder to get hurt or even die in their home. They can get hurt in all kinds of ways that you don’t think about.
I’ve seen people react differently to the move to a facility . Some actually improve for a while , with the socialization , although that is not a given .
Based on how you describe your mother, you are at the end of the possibility of Mom adjusting with less trauma .
Going by what I’ve witnessed in facilities , Waiting until your Mom is worse , decreases the chances of her being able to adjust more easily , to a new place with new people and a new routine , IMO.
She’s going to be declining . I’d move her before she’s totally lost for an easier transition . And yes you may notice it confuses her to move , that doesn’t mean you should have waited. The goal is to have her adjust , be calm and be safe .
My Aunt (her sister) considered having her live with her, but isn't ready to have a full time caregiver in her own home, so that is currently not an option. They are very close and my aunt has strong feelings about Mom moving closer to me and feels Mom should remain in her house. Brother wants the least expensive option b/c he has his eyes on some inheritance, which is a whole other stressful and awful twist to providing the best care for Mom.
I feel like it's already "too late" for a transition where Mom will adjust to a new place - maybe I am wrong. She seems like she's not doing great but I know this gets much much worse :(
Thank you for your replies!
The caregiver who made the suggestion was the one hour 3x/week person.
I guess I wonder if we move her when she is worse, how does the transition go then? I imagine it's confusing and hard no matter when, but perhaps I'm naive?
I agree more socialization and activities would be better. And it is heartbreaking when she fights about the idea of moving. Rock and a hard place, for sure.
I do have a memory care unit lined up minutes away from my home, a very nice place.
Thank you again for your replies and thoughtfulness!
It’s too bad the sisters won’t live together if they get along well . But it may be too difficult for your aunt to live with your Mom. It can be difficult to live with someone with dementia .
Is there a memory care near Mom where her friends could visit ? Although she may be forgetting who they are soon anyway.
Is there a Senior Center near mom? If so can the caregiver that is with her bring her for activities 1 or 2 days a week?
Is there an Adult Day Program near mom? If so getting her involved with that might help. Typically they pick up a participant and bring them to the program, provide a breakfast, snack, lunch and return them home in the late afternoon.
to your question though....
Any change may cause a decline. It could be temporary or not.
I would take moving her closer to you out of the equation, and I do not intend on this being mean, because I doubt that you would see her every day. It may start that way but life gets in the way and you would miss a day, then another and another. Soon your visits might be weekly not daily, then you might miss a week......
If she has the money to remain in her home with caregivers I would continue that. you apparently have good caregivers that you can trust and that are good with mom. That itself is a blessing.
If you want to save...drop the one that sees her for an hour a few times a week. She seems to be the one that thinks mom should be in a facility.
The 1hour a week caregiver was the first caregiver who was helping mom, earlier in dementia (when Mom would let her in!) - and now Mom sees her as an "old friend" -- the new 24/7 caregivers certainly interact with and chat with mom, but I figure the added visit from that one hour/3x a week "old friend" feels good to continue.
We have tried the senior center a few times, but Mom can be anti-social when it comes to those activities so it takes some cajoling to get her to go. But these are great ideas!
And no offense taken, and I totally understand where you're coming from - but I would certainly visit my mom daily - the facility is literally 5 minutes from my home and work, I don't have children, and I would be beyond happy to provide an anchor for Mom.
BUT - my thinking has been that keeping her in her home and in her community was the best option -- and some suggest moving her to MC is a better option, others say keep her in her home. Thus, my original question :)
So far, the care team has been amazing and yes, we trust Mom with them. We also have cameras so help everyone navigate things with the help of those (and the care team is aware of the cameras :)).
I just want the best for Mom <3
I'm impressed your Mom still texts and calls from the IPad.
We had round the clock caregivers for Mom. I also toured a number of facilities in two states. Like you, I was pretty far away. I went to Mom's house every 4-8 weeks for several days.
I got to the point where I figured as long as the caregivers kept showing up that I'd keep Mom in the house.
We pushed Mom with standing and walking. The care does get more challenging when and if they become wheelchair bound and bedbound.
Mom only used a wheelchair for about 3 months (of the 18-20 year journey.) When she was no longer able to stand and transfers became a problem I had her remain in the bed. We had to get a hospital bed with the bedsore prevention air circulating mattress and the caregovers had to reposition her every 2 hours to prevent bedsores. I enrolled her in hospice when she became bedbound. She was bedbound for 18 months before she passed.
As long as your mother is walking and standing and the caregivers keep showing up I'd consider keeping Mom in her home.
When walking and standing becomes problematic I'd consider the skilled nursing facilities as home care becomes tougher at this point.
I'd keep the 1 hour 3x a week person. The more eyes on Mom the better.
Mom's caregivers suggested the following social enrichment:
1. Painting with watercolors. Mom liked this once we started this.
2. The stuffed animal pet dog that breathes. Here is an example.
Joy For All Companion Robotic Pets | Pet Therapy for Alzheimer's and Dementia | Animated Pets that Move, Purr and Bark | Ageless Innovation | Alzstore I think we paid around $40 for something similar. I've seen a cheaper model in CVS.
3. Chores--folding laundry, putting away silverware, dry swiffering the floor (this may be too much for your Mother.)
4. Mom also had a daily walking schedule. She did a mid morning walk and a mid afternoon walk with the caregiver. Walking is very protective for the brain and the body. Towards the end she just walked from the bedroom to the kitchen for her meals but that small bit of movement prevented bedsores.
5. Drives in the car.
Also, unless Mom is going to roam off I'd take a look at skilled nursing facilities also. These seemed better staffed and offered more enrichment than the MC that I toured. SNF also have secure doors.
Since your Mom's walking is limited she may be past needing MC. ie. When Mom was in the wheelchair for 3 months she would not have needed MC nor would she have needed it when bedbound.
There is no right answer, however one thing to consider is if there is a rapid decline (a fall, hip breaks) and she really needs to be in a Skilled Nursing Facility (SNF), your options to pick the best one may be limited to which facility has a bed and is willing to take her when she needs the most care (sadly costs the facility more).
The 24/7 care she now has likely is costing a lot and high qualify SNFs also cost a lot. That said, SNFs that are Medicare/Medicaid qualified (fall under Federal rules/laws) that require on site nursing staff, physicians right there, and the ability to handle actual medical care as needed (IVs, X-rays, oxygen). Assistive Living facilities are State regulated and depending on the state some are good and other State are lax, very lax.
As a private pay person at a SNF, one can get a private room and bring in furniture from home to make it look like home. There are activities there and socialization activities with the other residents. And one can always hire and pay for a private aide to come a few days a week too.
It may be worth identifying some high end SNFs near you, so it is easier on you too. And see what the waiting times are for private pay, private room residents.
As others have said, if the current care givers (who are with her and see her decline) are voicing this need, they likely have good instincts as to not wanting her to be in an emergency situation of needing SNF immediately.
Do your best to not beat yourself up about this decision. It sucks, there is no sugar coating it.
My mom, 84 at the time, pitched a fit to not go. But a fall, two infections (IV antibiotics needed for 8 weeks), fungal infection (more IV stuff), shoulder surgery (that fall), need for PT: meant rehab in a SNF. And that became permanent as she could not use the one arm post op even with surgery. And yes she had dementia. But thankfully, as a private pay patient (until she spent down), she got into a high quality SNF 2 miles from us.
Yes she continued to decline, but then her physicians at the SNF were right there to care for her, and I no longer had to struggle to take her back and forth the doctor visits when needed.
Did she like it, NO. But there was no feasible alternative and she got the care she needed and had a private room till she passed. So I was grateful for that.
Best of luck with this journey. A journey none of us asked to be on.
I have my ducks in a row for MC , but should do more to line up SNF. I toured one close to me and it was devastating to be there, but certainly need to tour more and be prepared. Thank you for the suggestion!
I was an in-home caregiver for many years before going into the business of it. I can tell you for a fact that any disruption in the daily routines of people with dementia can be catastrophic and really cause major setbacks in whatever level of independence they still have.
Don't move your mother into a care facility if her situation at home is working out.
Now I know it was the best thing for her! She is a social person but didn’t see anyone other than her caregivers and me on a regular basis since she didn’t want to take part in any activities they offered, other than the occasional movie night when in IL. She also wasn’t exercising at all. MC gave her the social interactions she needed and they successfully encouraged her to participate in a variety of activities they offered. She is doing so much better now that she is around a diverse collection of people, she is going to exercise classes, and she participates in field trips and game nights as well as movie nights. She has lymphodema in one arm and at her last appointment to order new sleeves they found that her arm was considerably less swollen and her range of motion had definitely improved. I visit her often, though no longer every day, and I take her out to restaurants and events that I think she’d enjoy and sometimes include her local friends. She has been asking about tickets home to Alaska less often now.
She surprised me the other day when she told me she was happy there just out of the blue, I hadn't even asked her anything to solicit that response! As stressful as the decision to move her was for all of us, it was worth it. I do recommend researching and visiting several facilities first since they are each different. All the places I looked at were on the US News and World Report list of top facilities. They don’t cover MC specifically but I went by the information on AL to start with then researched the ones that sounded good there to learn more about if and what they offered for MC. Finally I visited about half a dozen places. They were all nice but the one I chose really stood out.
Each person is different and what has worked for my mother may not be as good for yours. Just don’t rule out MC as an option!
What I am gathering from all my conversations is that it's highly variable disease and circumstances, with no clear path other than to do all we can to care for our loved ones. Your Mom is lucky to have you!
Skilled nursing facilities are often understaffed and overworked (for profitability) and residents are parked in a room, with young CNA's popping in every couple of hours to check on them, then moving on to the next resident.
If you are on the fence, go with your gut instinct, if you feel she will be better in her own familiar home.
I would ask the caregiver why they think Mom should be moved to a facility.
It could be her care needs are becoming more than this caregiver can provide.
Try and get more detailed information about the caregiver's point of view, to understand why they feel she would be better served in a facility. Ask specifically what challenges they are having. You may need to find another home care provider (in addition, or to replace someone who is unable to meet her needs).
My gut is to keep her in her home with one on one care in her familiar home until she no longer ambulatory or able to be cared for there. We have OT/PT folks coming in also. The caregiver who made the suggestion was thinking greater social interaction would be supportive for Mom, and I don't disagree.
I will talk with the caregivers more about their thoughts. Thank you!
My brothers and I moved my parents out of their home they had been living in for 40 years. They were 90. It was not easy by any means.
My mom refused a nursing home, so we moved them to a small house around the corner from one of my brothers who lives in a warm state.
I live in a cold climate and they did not want to deal with the winters, understandably.
I had access to the cameras in their home, and I was the main contact w their caregiver and doctors, from 800 miles away. I visited regularly, but a lot of my involvement with my parents and their care was done from several states away.
Fast forward over the last two years, they both steadily declined enough to need 24 hours of in-home caregiving. I found the first caregiver on Care.com, and she was able to recommend other caregivers she knew.
Then last May I started both parents on hospice.
Sadly my dad passed away in his bed, with a caregiver at his side, on September 5. He went peacefully, sort of like a car simply running out of gas. I communicated with hospice and we set the rest of the necessary work in motion.
So, it can be done, keeping your loved one in their home. It takes a lot of work. It is emotional. But it is possible.
It definitely is a lot of work, and emotional! I accept my life stage to do all I can to support Mom, and realize the roadmap is fuzzy. Keeping mom safe and healthy and feeling loved is my minimum goal and optimally she is singing, doing art, and laughing!
My opinion only and if you can continue with the cost of care, leave your mom in her own home.
I wish I could’ve done that.
my mom lived in her home for 57 years. Last year January 2024, I moved my mom into my guest bedroom. She has vascular dementia, she’s 87 and is very active.
She remembers her way around my home, because she visited quite often and knows the house well, although she wants to go home everyday and thinks she’s only here to visit.
she also gets surprised even scared when she sees me, thinking she’s been home alone.
My mom sleeps well, still bathes and uses the restroom all by herself.
My issue is we don’t have any privacy anymore.
its been a life changing experience for my husband and myself.
she won’t let me take her to see “apartments” (assisted living/memory care) . She is in complete denial that she has dementia. Gets angry easily, makes up stories and nothing is her fault if I find changes in the home.
Its all very frustrating .
I appreciate your perspective and sharing your experience with your Mom and Aunt. My Mom keeps saying she would move to be near me but says she "won't leave her sister" (my aunt, in a neighboring town, 89, and living solo also!).
I am handling all aspects of Mom's finances, etc. and certainly am getting my ducks in a row for the future, despite having no crystal ball. I have a MC place lined up, but will need to have a SNF added to my preparation.
For at least now, she is safe, is entertained, and well cared for. She also has an OT and PT coming in once a week and once every other week. The friends from church stop by every other month. And for now, I drive her to visit her church and her sister once a month, and if she lived near me, there would be less of that.
I will continue to navigate her changes! What a journey!
I was in your situation about 10 years ago and I would say that it all depends on the facility. My Mum is turning 95 now, but was diagnosed with Alzheimer's about 10 years ago. She was living about six hours from me.
I moved her into an independent living apartment in her/our home town about 1.5 hours from my brother just before COVID. She liked it and the environment, but COVID was a nightmare. She ended up locked in her apartment due to so many infections in her buildings. With her dementia deepening and no one helping, she ended up eating spoiled food and milk and getting very sick. I finally was able to convince the facility to let someone go in and see her.
In 2021, I moved her into a Memory Care apartment close by me. She was there two years before having bladder surgery and falling twice. The facility said she couldn't stay since she needed more help than they could provide. Amazingly, two other places which were supposed to take Alzheimer's patients through end of life refused her because she had displayed some yelling and hitting of caregivers at her MC unit when she first arrived and found out she couldn't go for walks outside, didn't like showers, etc.
I transferred her to an expensive, supposedly high-end Alzheimer's facility. She was in her own room in an all-women's community. It was terrible. The other women guests were in worse shape than she was. There was screaming, yelling and other people wandering into her room. They were understaffed and with many foreigner caregivers who barely spoke English. They left my mother alone and barely helped her. I hired our own caregivers to be with her!
Last year, I moved her out and into her own apartment. I've hired nine caregivers to share the 24/7 shifts and they are all CNAs with one RN. They all get along with each other and support each other. My Mum is super happy to have so much attention and people always around. I know she is safe and well-cared for.
I vote for keeping your mother in her own place whether it is her current home or a smaller place near you which takes less work. Make sure to keep her doctor's relationships reestablished and/or in place and her medications steady.
Best wishes.