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I am 68 years old. I am living in an adult care home facility with 5 other residents who have dementia/ Alzheimer's. I am cognitively stable and was placed here because I have a rapid terminal neurodegenerative disease requiring 24 hour care. I am wheelchair bound, need oxygen, incontinent, assist with ADL's, swallowing issues, dysphagia, bipap, respiratory issues. Did not want to go to nursing home. Staying at home was not an option. My husband too stressed and could not keep up with the upper level care that I needed even with home care 2 hours in AM and PM. My issue is I am finding it very difficult coping with the behavior issues and outbursts of some residents that occur on a daily basis. I don't have anyone to communicate with other than the staff. I find myself living in my room a lot. My husband looked at many other facilities with a senior home advisor and this was the best. I don't know what to do. He feels guilty he can't provide the care I need, I am on a special diet and he can't provide that either. Would need 24 hour nursing care at home and house keeper and someone to make meals. Unhappy person now. I am a retired registered nurse.

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I'm going to take a different perspective. But, first, is this adult care home licensed? Second, were you in agreement with your husband and this "senior advisor" that this facility was the "best"? And based on what criteria? Did you see the home before you moved there or was the decision made for you?

I'm certainly not challenging your husband's decision. I'm just wondering about the "senior advisor". What are his/her credentials? Operating independently? Through a recognized organization? How much experience in placement? Social worker or other credentialed background?

Who paid the fee for the senior advisor? You or your husband, or the care home? My first thought was that, since this apparently is a small place, the owner/manager might have enlisted the help of an advisor to channel people toward this place.

Were any background checks done?

It's unfortunate that there are many options outside of private care and the nursing homes, but I think that there might be something better. In a small home, there's probably much less likelihood of getting professional level activities, music groups, etc. So the options for entertainment could be very limited.

Also, how many staff are actually in the care home during the day? An RN or LPN, CNA, and what else? A social worker?

You indicated that the neuro degenerative disease you have is terminal. Has any investigation been done to explore (a) palliative care or (b) hospice, in a facility that provides this level of care?

I honestly think you'd find more comfort and less stress in a "nursing home".

Ahmijoy, I'm not challenging or contradicting your opinion; you always have good answers. Given some bad experiences with facilities, I've come to suspect that there are some private or "back scratching" arrangements that take place in finding care for people post hospital, rehab, or coming from home care.
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Telenurse
Welcome to the forum. I’m sorry for your reason to log in.
I don’t really understand your health maladies but it does sound like you are in need of quite a bit of care. I’m glad your husband found it for you. I think your question is where could a person who needs 24/7 care go and not be surrounded by patients with dementia?
At first I thought perhaps a SNF because there would be others there who do not have dementia but I suppose there would be larger numbers that do, although I thought the more advanced cases were in memory care or locked facilities.
My husband has a cousin in his 50s who lives in a small care home. He found his through his therapist. He lived in another at one time which was sponsored by a church. He’s also lived in some awful ones. Prior to that he was in more conventional homes.
Perhaps you could spend an hour or so each day searching the areas that might not be in the main stream that your husbands helper might not have known about.
We also frequently suggest that posters check with the Area Agency on Aging for a needs evaluation. They might know of services that would be beneficial to you.
Perhaps your husband could find someone to come in a few hours a week to spend one on one time with you to discuss things of interest to you or play cards etc. I have a friend who is writing a memoir. She attends a writing class each Thursday morning. You might find an online writing class or book club that would be stimulating for you. Maybe you are looking to escape rather than be more active. A good set of headphones that would allow you to listen to books or music might be helpful.
Please come back and visit this forum. You will find people asking questions that you will be uniquely qualified to weigh in on.
Be sure to check out some of the discussions in the segment that follow the questions. Many of us are not in need of 24/7 care but are helping those who are and will be on the forum often.
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I am certainly not aware of all the different opportunities for placement, but I too was distressed at the high ratio of dementia residents in your tiny group setting. I can certainly understand why you choose to socialize more with the nursing staff, especially with your background. It must be very sad and lonely for you, with not much opportunity for socialization. My thought is my moms NH has many more residents, some with dementia, but some entirely with it, and only needing physical assistance. Today when I arrived one was playing the grand piano in the lobby for example. Out of the 40 on her floor I would guess that there’s at least 5 with no mental decline at all. That about the same ratio as in your small home, but in just terms of numbers there would be 5 people to associate with. If those numbers held true to the entire facility there would be 35 people. My point is that you might find a larger, more diverse population has more opportunity for you.
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Telenurse,

Welcome to the forum,and I am happy you have reached out here. Your situation reminds me of the group home that my siblings and I toured last year. It was a lovely home that had been redesigned for no more than 6 or 7 residents, but was private pay. My father could have afforded it by himself, but we needed a package deal for him and my mother. There was one main caregiver and a nurse who came in daily.

Contrast this with the nursing/rehab facility that my parents ended up residing in. As other posters have stated, there are a variety of residents - some with advanced dementia/alzheimers but the majority with just physical issues and little to no mental impairment.

There are also many people there getting rehab who are not long-term residents. My point is, that at your group home, you are limited to a small number of people to interact with. Their nursing home is a constant hubbub of activity. Sure, they could hide out in their room if they wanted to and only interact with the CNA’s, and nurses, and housekeeping, and laundry personnel, and hairdresser, and maintenance supervisor, and activities director....... you get my point. My parents choose to interact with the other patients and it is encouraged but not mandatory. There is always something going on. Nursing homes used to be called rest homes, and I guess for some, it still can be. Yes, there are a few residents who seem to have advanced dementia, but there are so many more who can still carry on a conversation. My parents both have severe mobility issues, but moderate dementia. Most days they are still able to carry on a conversation.

You may have a lot of physical issues, but you seem well able to express your needs and wants. Tell your husband what you told us, and let him read some of our replies. If that gets no results, check with your Area Agency on Aging. I think you are in a position to advocate for yourself. Please let us know how you are doing. Yours is a unique post. I’m sorry my post is so haphazard. I am in a hurry, but I wanted to reply.
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It sounds like much care was taken to place you in a facility that would be able to give you the best medical care possible. What are your feelings as to where else you could go? You mentioned that you did not want to go to a skilled nursing facility. You also said that home health care was becoming too involved and stressful for your husband. Do you have any ideas for alternative care? Does your husband come to visit? Do you have children who visit? Are there any activities offered by this facility that you could attend? If not, could you suggest to staff what you might enjoy in a possible activity? Express to your husband how you feel, not with the idea of coming home or changing facilities, but ask him to suggest to staff that you need something to occupy your days. If your idea is to change facilities I can tell you that most are the same. If there are people there with dementia, they will act out. Sorry to say that unless you are being physically threatened by them, it may be something you’ll just have to learn to live with.
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Ahmijoy, those are my concerns as well. I can't explain why, but I just have a "funny feeling" about the way this was handled, not by her husband, but by the "senior advisor".

I've seen so much interconnectivity and placement referrals on the part of big facilities, hospitals, social workers, even a few doctors, that I realize there's literally an unseen network of referrals, and perhaps more than a few instances of "I'll scratch your back if you scratch mine."

The doctor who recommended hospice care for my father referred me to the hospital social worker, as is the custom. The ONLY hospice she mentioned was the one at which the doctor was formerly some level of executive.

And there are a LOT of hospices in this area. I found my own, made my own choice.
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GardenArtist, absolutely no apology necessary! Your knowledge is far superior to mine, and if I were that easily annoyed, I would have been divorced long ago! :)

Telenurse sounds very aware of her surroundings and very intelligent. But, I too wonder how her placement was handled. I would think that for someone who requires her level of medical care, this group home would have to be staffed 24/7 with medical personnel, no? And I agree that there might not be any activities available if this is a private home and is not affiliated with a larger facility. And, one does have to wonder whether she was involved with her placement in this facility or, if it was arranged for her by husband and the “Senior Advisor” without her knowledge or approval. Having dealt with one of those companies who offers to assist you find “a place for” your loved one, I get your meaning. 2 years after Mom’s passing, I still get calls, emails and junk mail from them. I hope TeleNurse can fill in some of the blanks for us.
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We had considered a continuum of care facility for my mom. There was assisted living for stepdad, memory care for mom and skilled nursing for either when the time came. I was quite surprised by the nursing area, people were not bed bound, they were actually in the dining area socializing and playing games, etc when we toured. Not at all what I expected. This was a "Life Plan" community. Oh and they also had independent living apartments. Seems it was also operated by a Christian organization. There was a long wait list for assisted living, but not for skilled nursing. I am sure there must be a similar facility near you. It was also a non-profit so fees were reasonable and it accepted Medicaid. Google to see if you can find a similar community.
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Remember the medical system is dictated by health insurance--I am assuming you are on Medicaid. So you say your husband can't care for you... Medicaid will only pay for adult daycare and nursing home placement so your options are thin other than trying to transfer to another facility but you are going to have problems there too since Alzheimer's is an epidemic . Home health is very expensive (even a sitter who does nothing but sit is $20 an hour) and CNAs (who do hands-on care) costs a lot more than that.  Medicaid pays for no home health..at least not long term. They will pay for things like occasional dressing changes.  However, Medicaid is also dictated by your State so you need to know the law..and Medicaid can be VERY tricky.  If you are over 55 there is some kind of estate pay-back law. If you don't believe me read it here:

www.medicaid.gov/medicaid/eligibility/estate-recovery/index.html
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In a SNF, there are plenty of people like you, who have their minds intact but are housed in failing bodies. I would rather be in a SNF than a small home surrounded by dementia patients! I can only imagine what nights are like there!
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