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So this journey down the rabbit hole of Dementia continues!
After my epiphany that I need to respect my Aunts wishes of not leaving the area she has lived in for the last 43 years a lot has happened.
She has been officially diagnosed with Alzheimer's. Her low life son has been placed in a shelter and is now receiving SSI. Her ALF has insisted that she move to memory care.
At $8,000.00 a month for a private room, she will run out of money in aprox 4 or 5 years. It's completely possible that she will live longer than that.
I opted for a shared room for financial reasons. Not sure how she's gonna handle it.
Many of you have had a positive experience with your LO's in a shared room, but many of didn't.
Any words of advice as to what I can expect?

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When my Mom went into memory care, she never even knew she had a room mate. Yet she noticed other things. So it was no problem at all, thankfully. However, most do want a friend when there. It was not unusual to see two women holding hands and walking together, just like young kids walking in a park. They enjoyed each other's company. It all depends on how each person's brain is functioning at the time. She might take sometime to adjust.
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My Aunt shared a room in the nursing home as her financial choice in her last few years. She was mentally as sharp as a tack. She had someone intentionally get rid of all but a few of her thing and they accidently got rid of the dress she planned to be buried in. The director told me that people are afraid of dying alone.
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I will say with first hand information since with my personal experience because my wife of 53 of marriage lost her life due to the virus on May 20th. she was dehydrated, malnourished caused by assisted living not be able to take care of her The decision to put her there was a very bad one which I regret. I did.

Andrew Cuomo the governor of NYS with immunity form prosecution,   allowed hospitals with positive cases to be sent to nursing homes and assisted living facility with hardly any PPE and no testing facility and staff leaving , infecting my wife and over 40,000 poor seniors with the terrible virus. He had the navy medical ship comfort and the javits center and a huge center in NJ. He not use then only to send the patient to their death He made sure his mother was taken out of the assisted living home before he sent the order out to move these hospital patients to nursing families and assisted living..

I want ever family  to know how unprepared these faculties,were and the way NYS governor took my wife life away and  the terrible way she passed away.   I am on a mission to have Cuomo be pay for his  maleficent action causing the death of our loved. by his actions. I I could would like to know what went through his mind when he did this.

Anyone family has gone what I experienced you must speak out for your loved one whom have died from getting the virus. please call or e-mail you elected officials for the sake of people that were lost because of what he did   Please answer this posting
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Invisible Jul 2020
Joel, I am terribly sorry for your loss and also horrified by what we have witnessed happening to people in nursing homes this year. My father died last year while in memory care and I cannot imagine him surviving this year if he hadn't. He certainly would not have understood what was happening.

My understanding from the news was that the ship that was sent had too many restrictions about it's use for it to be useful - I think they said they couldn't put people with the virus on it. I think our lack of preparedness for this virus put our most vulnerable communities at early risk for catching it. We didn't have the test kits and the people taking care of our loved ones in nursing homes were actually bringing the virus in from outside and not practicing what we now recognize as appropriate safety measures. MInimal staffing and attrition have always been a problem at nursing homes because of difficult working conditions and low pay. Loved ones will never get the 1:1 attention they would get if we could take care of them in our homes but many times that is also impossible. I personally hold the President of the United States accountable for the all the deaths and the economic mess in this country. It's not like we didn't witness it in S. Korea and China before it broached our shores. Kudos to you for crying out and holding our leaders accountable. Let's also try to get to the people who still don't consider this virus seriously.
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Make sure EVERYTHING has her name on it. Mom was in a shared room in MC and stuff disappeared at a rapid rate. Her teeth, glasses, clothing, shoes (sometimes just one shoe), the ensure and boost we put in her mini fridge beside the bed, her TV control (she had a small screen TV for her use), snacks we sent to her, personal items such as lotions, tissues, teeth cleaners and brush, etc. I tried to find a place to get personalized labels to put in every clothing item but couldn't locate anyone. I found buying cheaper, slip on shoes worked better and I used permanent markers to put her name on them along with everything else. It made it easier to find. They staff said they were not allowed to search for others items in rooms of those they suspected of picking things up. Got a bit expensive after a while. And make sure you put money on personal hygiene items. We had to pay extra for nail care, hair styling/cutting, etc.
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When I got my two married friends into a memory care apartment, one of the things the facility told me was that after 36 months of regular payments, if we ran out of money, they would accept whatever public funding was available. It's now been almost 5 years and we are applying for veterans funds and whatever other public money the husband qualifies for. Having to leave is not on the agenda. The wife died after only 5 months; the husband is physically healthy--just has no short term memory and can't live on his own. I will have used over $500,000 to pay for his care, so the facility should be happy with that, I would think. I realize the staff there requires a lot of money, but have no idea what the actual costs amount to. Perhaps the facility you are considering has the same policy and thus 4-5 years of money would be more than enough.
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xrayjodib Jul 2020
Thanks Johnny,
Unfortunately the facility that my Aunt is in does not expect Medicaid. Private pay only.
I am aware of the Veterans benefits, but at this point she doesn't qualify because of the proceeds from the sale of her home.
Although I am still trying to respect her wishes, I still believe that moving her from California to Montana to be closer to me is best.
Now that she is in memory care, she is never in her room. She hasn't said one word to me about her roommate(I call her every other day). So I will just wait and see what happens for now!
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I don't know the woman but if there is any way to keep her in a private room do so. Sharing a room is sheer hell unless you are one of the rare lucky ones who hits the jackpot. It is horrible. I don't know what she has or doesn't have but when she runs out of money, you can apply for Medicaid although there is a five year look back period. As long as her funds were used for her care, there should be no problem. And if she lives that long, her mentality at that time won't be affected much by a roommate. I say go the private way.
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I pray that everything goes well for your LO.
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I agonized about moving Mom in with a roommate. I was pleasantly surprised when Mom liked it better than the single room she had been in for 5 months. I hope it works that way for your aunt.
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I’m 8 months ahead of your journey. My mother is now in single room at nice Memory Care. Several times she mentioned that she wished she had a roommate. Please don’t feel guilt about placing her w shared room. She might like it.
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xray, I hope the move is going as well as can be expected!
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xrayjodib Jul 2020
Thanks Barb,
Not yet a week, but I am told she is a busy bee. Calling bingo and telling the director what everybody needs.
She hasn't said one word about her roommate(stage 4 Alzheimer's). So far, so good! Fingers crossed and praying like crazy!!
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We have been caring for my MIL with Alzhimers for over 6 yrs now.

If your aunt does not have any additonal major medical condition, mostlikely, she will outlive the 5 years period you previously stated. With that been said, you need to factor in that it is not unsual for an alzheimer patient to live upto 10 yrs or more.

Things to consider:

- if your aunt is kept with the current setting, what options of care will be avaialble after? Ex. State sponsored Medicaid, any other assets, etc and also the timeframe that will require you to get the assistance.

-is she in a stage in which you can have a honest financial dialog about the financial situation?

- if not, then you need to make the determination of what is the best for her even if it not comfortable at the moment. There nothing than to run of funds to care for a love one.

-
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xrayjodib Jul 2020
Thanks Erica,
Unfortunately my Aunt is unable to make any type of decision.
I have been very fastidious about her finances, but it's a tough situation to do what I know is best vs what I know she wants.
I appreciate your input!!
Thanks!
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Give it a chance and see how it goes. My moms in a single and I occasionally consider the financial aspect of that decision. One year in, staff says “let her be”. She is 98, if she outlives her money and has to move to the Medicaid option within her facility , she will end up in a shared. Go with your decision, but give it a chance. Don’t think you made a “bad” choice. It’s a long haul and you need to be flexible .
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I went through this a year ago...suffice it to say, I found this wonderful residential home in my area with 8 residents and a staff of 3/1 although there always seems to be more staff than that...I could go on and on about this wonderful home (this company has 9 houses) but what I was warned when I had 5 days to decide whether my mom was going to stay in a shared nursing home, shared memory care facility or this residential home....to be careful what they will nickle and dime you....will at some point they tell you that your mom needs additional help and they cant provide it....that just adds more $$$...also if you mom is like mine, quiet, not a wanderer with dementia, not foul mouthed or violent, will they label your mom as a "no problem resident" and thus she will be the forgotten resident? These are all things I was warned about and after 5 years of very hands on care with my mom although she had a livein (through an agency) I needed to find a place that could care for mom and not feel that everyday I was involved in something...my advice to you as I dont know where you live is to see if there are any of these Residential homes that are much smaller and can take care of your LO! Believe me, I thought the RH would be a dump and a rehab of a home, but I was so wrong....mom is 96, has just spent 3 different visits in the hospital and back at her Residential home and seems to be on her last path, but her home has been so proactive with me in her change of care and the recommendation of hospice originally not necessarily for end of life, but for further assistance, that I could not be more pleased with the care and respect they have given to my mom and to me as her daughter.
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Auntyem Jul 2020
Thank you for your insightful post. We had an urgent situation that required dad be placed in a memory care facility during the C-19.
we feel very fortunate to have a residential facility similar to your moms'. The staff is incredible. Kindness and compassion is a trait shared by all of them.
We feel very blessed.
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My aunt was in a shared room when she was in rehab in her 90s. She found it interesting to have another person in the room. Her roommate had severe alzheimer, and got visits from her daughter regularly. My aunt helped her roommate by bringing her glasses of water. One piece of advice, downsize her to essentials - nothing valuable, no more than $5 of cash, no checks, have all of her financial statements sent to you (if you are her POA), take away anything dangerous like scissors or knives, have comfortable clothes for her (elastic waist) that can stand up to rough laundry services (hot water, hot dryer), and put labels with her name on her clothes if they don't do it at her facility. She can have personal things like photos and pictures, possibly her own bedding (put her name label on it) etc. Make sure all of her paperwork is in order with POA, a will, medical directives, etc. if it's not too late.
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Jean1808 Jul 2020
My parent removed a sharp knife from the kitchen and lied about its whereabouts. Still don't know where it is. Person is dependant on opiates for pain and has been running out of pills past 2 months and having some cold turkeys during those times. Has been having paranoid delusions about people outside since the riots. The apartment lease belongs to the parent who wants to remain "independent" so I (the only child) am looking at how to move out unemployed and vulnerable amidst a pandemic. Parent cannot afford apartment on their own. I am concerned about covid in NH Alf but I think they are safer there where they and their meds can be managed. Lesson for us all as we age. When we're crazy we won't know it.
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I just went through this as well, so interested in seeing the responses. The quarantines during the pandemic cut me off from my mother, and I was helping to nurse her. That meant she had to be moved from independent, then to assisted, and finally to memory care. I have no real access to her and I'm dependent on what the facility and hospice nurses tell me, and when they will let me at least Facetime with her. She was put in a shared room and it didn't go well for Mom, but when I asked the facility why they couldn't handle a person with Alzheimers at 8000 a month, they stopped complaining about my mother and moved her to a private room without raising my cost. We are also running through money exponentially, and I'm worried my mother will outlive her resources--and she's under hospice.
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Jean1808 Jul 2020
My mother outlived hers and we live together but it may be becoming dangerous due to her paranoia, etc. So, don't know how it will turn out. Caution if she moves in with you and is mobile enough to steal knives fron the kitchen, get into disinfectants, etc.
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My dad is moving to memory care next week to a private room with shared bathroom. It was the best we could do as single rooms are far more expensive and all seem to be full in our area. My dad would not be the best roommate for someone (behaviors -- calling out, etc) so hoping the shared bathroom will work for him. They told me the man on the other side is really nice so maybe they will like each other.
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Invisible Jul 2020
When we moved my father from independent living into memory care, I thought he might enjoy the presence of other people, since he had become more isolated as his memory and mobility faltered; he used to be a fairly social person. He didn't because the others were all a little off in their own ways. People with dementia can be surprisingly perceptive. He did seem to get along with the staff pretty well. People seem to get more absorbed in themselves as they get older and nursing home staff is mostly about meeting physical needs, not so much about socializing.
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Xrayjidib, in that case, I’d really consider your needs too. Being the responsible person for a dementia patient is a huge job. You are on call 24/7. It’s very demanding and could go on for years. (So far, it’s 6 yrs for me,) You are a good person for caring and sacrificing to help your aunt.
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It’s great that you are helping your aunt. If her son receives SSI, it likely means that he is disabled. Does he have mental illness? Thus the shelter? Is he able to help with her care or engage in meaningful communication at this point?

I’d consult with an elder law attorney to make sure you have proper documents to manage her affairs and make medical decisions. And get info on Medicaid planning, so you know what the options are down the road. Based on all of the work you will be doing for her managing her care for the rest of her life, I’d relocate her to be where you live and want to be happy. She will progress and not realize what city she is in and not recall where she may have told you she wants to live.

The shared room sounds good. My LO loved her roommates, except for one who was destructive. Give it time. My LO loved MC immediately, some require adjustment time. I’d keep in mind that some people with dementia aren’t content with any living arrangement, even living in their own homes may cause them dissatisfaction.
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xrayjodib Jul 2020
Thanks Sunnygirl,
Yes, my cousin is mentally ill. He was physically abusive towards my Aunt so I had to obtain a restraining order. So he can't nor is he able to be of any assistance to his mother.
I have all the proper legal documents in order. It's amazing how much time it takes dealing with someone else's business affairs.
I so glad to hear that you had a positive experience with your LO in a shared room. It gives me hope!
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You may eventually want to consider Board and Care in a facility that is more home like and with fewer patients. Many find that this works better, and many find it works not as well. If you think her money would last four or five years it may be the case that she will care little after that about where she is; and of course that may NOT be the case. Why not start out with the shared room and see how that goes for her. You may be advised not to visit for a little bit. This is often what is advised. As you can imagine the change comes as quite a shock, and the visits of someone seen as having an "answer" to the situation often results in upset for the elder, delaying adjustment. Every facility seems to handle it differently. Some thrive with being able to wander a complex more freely, have more company; some do not.
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xrayjodib Jul 2020
Thanks Alvadeer,
As it turns out, I may not be able to see her for a while.
My hope is that I can bring her to Montana for a visit in the Fall.
Time will tell!
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