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Old 08-29-21, 10:02 AM  
TracyQ
 
Join Date: Nov 2003
Location: Boston, MA
Alzheimer’s/Nursing Home

My sister and I have been caring for our aunt with Alzheimer’s since the start of the pandemic. She was living on her own when we started caring for her but in November she fell and could no longer go home alone so we made the decision to move her in with my mom.

Her Alzheimer’s progressed quickly and it’s been getting more difficult to care for her at home so we made the painful decision to move her into a nursing home. We took our time, talked to social workers, nurses, her doctor and a lawyer. We visited a few facilities and decided on one. We moved her in Wednesday. My sister and I stayed with her all day and at dinner time we left her with the nurses aid in the dining room.

At 10:00 p.m. I got a call from the nursing home saying that she was up causing a disturbance. She wouldn’t settle down for the staff because she was disoriented and looking for my mother. They asked me to talk to her on the phone. I told her I loved her and to please go to sleep and I will see her in the morning. She said she loved me and she would go to sleep.

At midnight I got another call saying they were calling an ambulance to take her to the emergency room. I was shocked and thought maybe she had fallen or was sick. I asked what happened to her and they said she was fine physically but she was combative and wouldn’t listen to them and go to sleep so they had to send her to the hospital. I was stunned that they would send her to the emergency room because she wouldn’t settle down. I told them not to do that and I would come and get her. I got there at 1:00 a.m. and took her back to my mother’s house.

The nursing home called me the next day and said they were sending us a refund. My sister and I went back and got her belongings.

We put all our faith in the nursing home. We feel like we were betrayed by them. I feel that they could have done more to make her comfortable and help her settle in. This was our first experience of sending a family member to a nursing home and it’s been horrific. We are now trying to get her into another facility but they have a waiting list.

I’m not even sure why I’m posting this but I needed to vent.
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Old 08-29-21, 10:27 AM  
laurajhawk
 
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Tracy, that's awful. You would think a nursing home would be able to handle a new resident's disorientation and difficult reactions!

Sending you all the emotional support I can through the VF wire.

My mom has had a somewhat similar path, in that she was in an independent-living apartment at the start of the pandemic, had a fall and mental decline and eventually, this month, we moved her into assisted living in the same facility. None of the family lives nearby and we had to get her somewhere with more care - keeping her in the same facility was the most feasible. It's been good in that they already know her and she's not AS disoriented bc some things are still familiar. But we would still eventually like to move her to be closer to my sister. Anyway, not trying to hijack your thread, just letting you know you have company in these tough decisions and I know you are doing everything you can!
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Old 08-29-21, 10:39 AM  
Gams
 
Join Date: Mar 2007
I, too, am surprised the nursing home couldn’t handle the situation - it’s certainly not an uncommon one, but for whatever reason, they couldn’t cope with it. I don’t think I’d feel betrayed by them, but disappointed the situation was beyond their ability to handle. There is a lot of responsibility on your shoulders but you WILL find the right place for your aunt eventually. So many people are dealing with this problem today and there are no easy solutions. Good luck - hang in there!
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Old 08-29-21, 10:51 AM  
cyana
 
Join Date: Dec 2001
Tracy - Sending you a huge (((hug))). DH and I relocated his mom from out of state to live with us (dementia) for several years until she required an inpatient admission (abruptly lost the ability to stand and walk). She was transferred to a nursing home under the guise of subacute rehab (not sure how earnest the rehab attempts were). I can honestly say without hesitation it was one of the most horrible experiences of my life.

These facilities are largely for-profit, and you can't be careful enough in vetting them. I also thought I did my due diligence - talking to the hospital discharge planners, visiting multiple facilities (dropping in with no advance notice), asking people I knew for recommendations, etc. Hopefully you can locate a facility that is better equipped to care for patients with Alzheimer's.

Don't hesitate to come here for support.
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Old 08-29-21, 11:10 AM  
bzar
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Tracy, I feel so bad for you and your sister because it is so stressful to find a place for your aunt.

could you go back to the doctor/social worker to possibly find another location or another solution to getting care for your aunt?

sometimes it takes trial and error to find a solution - either another facility, etc. like adult day care or have someone come in to your mom's home like a sitter.

a lady at church had to find an assisted living facility for her DH who was diagnosed with Alzheimer's disease. he tested for the gene years ago, and they knew this day would come. he was fine up until he began exhibiting violent behavior, and had no memory of it. i've known them for a long time, and he was never like that! she is a retired private school principal and he worked for the city & county.

when my grandma had a stroke, she had severe dementia, and my mom had a handi-van pick her up each day during the week to go to adult day care. this was because all of the adults in the house were still working and could not care for her. she would wander off and one day rode the bus to the other side of the island!

my uncle, though not suffering from dementia, had gotten expelled from 3-4 care homes because he claimed each of the facilities was "doing him wrong." he became a nuisance - filed complaints with state agencies for no reason. like your aunt, one of them sent him to the hospital/emergency when he got into an argument with them. he stayed in the hospital for about 2 weeks while they were trying to find another home for him to stay in. he stayed with my mom for a few months, and at the beginning, she made it clear he had to continue to find another place.

my co-worker had set up 3 caregivers and used google docs to coordinate the care of his mom among the 3 caregivers. his mom was living in Colorado (he lives in Honolulu). he also set up a "baby monitor" in her home to track her on his smart phone. she did not have dementia or Alzheimer's, but had a lot of medical issues. eventually, she had to move to an assisted living facility.

i would also consider calling the United Way for suggestions in addition to speaking to your aunt's doctor. our local chapter has a referral line that the public could call for assistance and advice. but i'd start with her doc.

the home that refunded your money might also be another place to ask for ideas - sometimes it just doesn't work out. good luck and keep us posted.
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Old 08-29-21, 11:28 AM  
TracyQ
 
Join Date: Nov 2003
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Quote:
Originally Posted by laurajhawk View Post
Tracy, that's awful. You would think a nursing home would be able to handle a new resident's disorientation and difficult reactions!
This. And she was on the memory care floor!
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Old 08-29-21, 11:40 AM  
TracyQ
 
Join Date: Nov 2003
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Quote:
Originally Posted by cyana View Post
Tracy - Sending you a huge (((hug))). DH and I relocated his mom from out of state to live with us (dementia) for several years until she required an inpatient admission (abruptly lost the ability to stand and walk). She was transferred to a nursing home under the guise of subacute rehab (not sure how earnest the rehab attempts were). I can honestly say without hesitation it was one of the most horrible experiences of my life.

These facilities are largely for-profit, and you can't be careful enough in vetting them. I also thought I did my due diligence - talking to the hospital discharge planners, visiting multiple facilities (dropping in with no advance notice), asking people I knew for recommendations, etc. Hopefully you can locate a facility that is better equipped to care for patients with Alzheimer's.

Don't hesitate to come here for support.
I can honestly say this was the most horrible experience I have ever gone through. We felt awful sending her to a facility but also a sense of relief that she would now have the care she needs. It was horrendous trying to explain to my sleeping 81 year old mother why her younger sister was suddenly back in the house.

You are absolutely correct about vetting them. This facility is one of the top rated in the state. Prior to making the decision we hired a well respected elder law attorney and told him the facility we had in mind and he said he deals with all of them and everything about that one was top notch. The absolute best in this area.

I got the sense the head nurse on duty wanted a quiet night and did not want to deal with my aunt. I wonder if a different nurse was on duty if it would have worked out. If we could have gotten through the first night...who knows.
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Old 08-29-21, 11:41 AM  
TracyQ
 
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Originally Posted by Gams View Post
Good luck - hang in there!
Thank you.
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Old 08-29-21, 11:45 AM  
TracyQ
 
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Originally Posted by bzar View Post
could you go back to the doctor/social worker to possibly find another location or another solution to getting care for your aunt?
She has an excellent doctor who has a lot of empathy for her situation because his father had Alzheimer's. He was on vacation last week but I'm going to call him first thing Monday morning.

Thank you for your sympathy and also for all your suggestions. I never thought about calling the United Way but I will.
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Old 08-29-21, 12:24 PM  
bzar
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Join Date: Feb 2002
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Quote:
Originally Posted by TracyQ View Post
She has an excellent doctor who has a lot of empathy for her situation because his father had Alzheimer's. He was on vacation last week but I'm going to call him first thing Monday morning.

Thank you for your sympathy and also for all your suggestions. I never thought about calling the United Way but I will.
glad to hear - sounds like the doctor has first hand experience, which is the best.

my uncle was such an embarrassment. he was suffering from depression, and i suggested to my mom that he get evaluated and treated for it, which he agreed, thank goodness. thankfully, he didn't get physically violent, but he would always be angry and negative. if he was mellow, all would have worked out. he had been placed in really good home-care set-ups. my mom and niece had met the care givers (uncle's social worker and doctor helped him find his many home-care caregivers). in each instance, he resided in the care home, which can take up to 6 patients in a home setting.

my heart goes out to you and your family in finding a solution.
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Miyagi: Wax on, right hand. Wax off, left hand. Wax on, wax off. Breathe in through nose, out the mouth. Wax on, wax off. Don't forget to breathe, very important.
[walks away, still making circular motions with hands] ~ Pat Morita, The Karate Kid, 1984


disclosure: in the years 2002-2004 i had a professional relationship with a distributor of fitness videos; see profile.
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