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.
I think finding a larger place, with a larger spectrum of people, might work better for you. Good luck!!
I don't have your health challenges, but my own experiences with severe asthma and some mobility issues have been socially isolating so I think I can understand some of your feelings. I offer a few suggestions for reducing that sense of being alone and I hope some of these will be helpful for you. I escape the real world at times by diving into a good book and experiencing another world. Some movies are good too, but they're aren't many that completely engage the mind. Facebook has some interesting groups in my area where people post photos or ask questions about places and people from years back and often start many long on-going discussions - maybe you could find some group from your area or career path. Tutoring and homework sites offer an opportunity to use that good mind and education to help young people trying to find their way and focus your thoughts are others. The Ancestry site allows you to research and build family trees - and sometimes make new connections to distant relatives you didn't even know you had. Find-A-Grave has a lot of posting from graveyards without links between family members - I spend time making those links. Computer card games work some for me too - both single player and the ones where you link up with other players online. They next one can be hard, but when it works it's great. If there are extended family members or old friends you lost touch with, you might try giving them a call, chat on the phone or maybe ask them to stop by for a quick visit.
Sorry a lot of these options are around a computer, but I am a "techie" and the computer has been a lifeline to the "outside" world for a lot of years now.
I need to correct your information. With the Medicaid Long Term Care program , a person has the choice to live at home with personal care, homemaking, and companion care (number of hours weekly based upon needs --but not 24/7 care), or in an assisted living facility, or in a nursing home - all based upon level of care.
There are quadriplegics who live at home with a caregiver and the Medicaid LTC aides to provide care throughout the week. But the caregiver must be someone who can cope.... and ideally would have some other family support. Not everyone can do this.
And I have seen some really nice nursing homes which would be a better choice for this young 68-yr. old, but that is in my area where I live. They would have the secured memory care units for those with dementia. And the area where this person would be would be separate from them.
www.medicaid.gov/medicaid/eligibility/estate-recovery/index.html
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.
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.
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.
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.
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.