I didn't want to go to a nursing home, but staying at home was not an option. Where do I go?

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.

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.

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.

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.

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.

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.

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.

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

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.

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!

boy sorry you have to go to there so young ..well after 2 pm must be rough well i found out that melatonin is a good aid to keep the dementia in better check it cuts back on the sundown effect they got 3 & 5 mgs wish you could go give them some so they will not act up ..summer i think is worse for the sundown i gave my mom melatonin round 1 pm that kept her in better check ..& it is not expensive at walmart ..my mom passed from dementia in her voilent times kinda glad she is gone ..but i miss my old mom oh well ..well good luck

Thank you very much for your question. At 94, I put my dad in Assisted Living. (He should have been there long before). I thought about putting him in AL that only has 4-6 residents, but thought that may not be enough people for him to interact with. So, I found a place that has about 40 people. It's perfect. He has his own room, yet aids can take him to meals, activities, etc. The have medical staff on site once a week. I literally found it through google searches. Best of everything to you. Finally,  if you look to move, have your husband and anyone else take you along to investigate potential places. You are the one who will have to be there.

Rosemary, I wish such a facility existed in central NY when I was trying to place my Mom! The handful of assisted living facilities here needed her to be able to walk on a walker as far as the dining room! Only if something was broken or sprained would they allow a temporary wheelchair. This is probably why the NH here are full. If I may ask, generally speaking, are you in a large metro area? Are the prices for such nursing services nearly comparable to the 10K NH costs?

cetude,

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.

I believe a big part of the issue is that most residents in nursing homes are about 2 decades older than Telenurse. However, in the one where my mother lives, there are at least 2 people in their late 60s who are fine mentally but have physical problems, and at least one other is probably in her 40s, mentally fine, and in a wheelchair although I don't know her specific health situation. I remember reading that some nursing homes (presumably larger ones) have enough younger residents that they have a wing in which you can hear rock music, order pizza, etc., thus having an atmosphere different from that of the bingo-playing crowd (no offense intended to anyone who plays bingo!). Perhaps there is something like that in her area.

I think our OP is gone. That’s a shame. There is a lot of good information and many helpful suggestions following her post.

Hi I had my mom in several facilities before we found a better place. One of the places was a home sounding like the one you are in. I moved my mother because her mind was perfect right up until she passed 10 weeks ago. It is difficult enough for you to manage being in a wheel chair & elderly that you do not need additional problems. It is depressing for someone like yourself to be in an environment with others who do not have the same mental capacity you have. There are assisted living facilities that have memory care residents seperated from residents who can have conversations & remember them. Please realise it is worth it to move because every day of your life is being effected. Your mood & quality of your life is so worth making a change. Blessings.

Try looking for a place more suited to your needs - there must be somewhere that has no dementia patients & you should be with others who, for want of better words, have their minds sharp but their bodies are failing them early - it may not be in your area so then you will have to balance that too

Could you hire a non-medical person to be your aide, clean house, and cook in your home?

TeleNurse, can you tell us what your reasons for not wanting to go to a nursing home? Is the behavior of the dementia patients the primary reason you are unhappy in the adult care home or is it the social isolation and lost companionship? Moving from your home to any care facility meant a significant loss of companionship with your husband and comfort from your home.

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’m very sorry things have turned out this way. I can’t imagine a home of dementia patients as your only companions. I hope you get visitors. Im there with you, feeling very low. I hope a miracle happens.

I have an aunt who is almost 100. She is completely sharp - on Facebook, sending emails, etc. Her body however is failing (in a wheelchair, plus many other things) and for the last number of years she has been in the full nursing care in a continuous care facility. So I know there are places which will provide the medical care and still have people who are mentally alert.

I think finding a larger place, with a larger spectrum of people, might work better for you. Good luck!!

I'm so sorry. I can understand why you are placed in a NH. However, there are usually floor separations for those with ALZ/Dementia than those who just need skilled nursing. Can they move you to another section? Are you able to research other nursing homes in your area? There might be other places that fit your needs better. In my opinion, assisted living places cannot provide the level of care it sounds like you need. I know that in home care is expensive, especially when you need help with ADLs. I wish you well.