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I am currently in the process to get my mom placed should be done sometime in January.
Her medical team strongly advises against placement at this time. Her needs can be met in the community just I am not wealthy enough to cover the costs of help nor to quit my job and do it myself.
Medicaid refuses to cover enough home care and I have no family willing to give up their own time or lives to do so. Rightfully so.
So more or less her medical team has been warning me about the sharp decline that is possible and the lack of activities due to staffing issues.
Granted, the staffing issues was a warning the administration gave me. I know placement is far from ideal and in a perfect world I would give my mom the moon and stars. That is not within my power.
My concerns are also it seems being an advocate is not exactly less stressful perse especially with a parent that technically can function to a high level in the community. My mom needs placement because she is a wander risk and I cannot keep someone around at all times and I refuse to do the whole tag her then catch her when she wanders.
I feel for her cause unfortunately her friends from church have also stated that they probably will not visit her when she is placed. Too hard to come face to face with their own mortality.
So many beg me to keep her home but no one has real solutions. She is a wander risk. She lives in Upstate NY and I live in Bristol PA.
Not exactly best places to wander I mean no place is good to wander but you get my point.
At this point it sounds like being a advocate is also a lot of work, and I am getting sick of dealing with doctors and medical staff telling me I should explore other options. Even the MC unit I am placing her has expressed hesitation due to lack of overall engagement and suggested I took more time to find a better fit. Though when I asked where do they recommend they only could give me private pay options which is not possible.
Why do people make this so hard? What do the expect? It sucks but what more do they want? Give up my future so my mother can have a limited future?
What sense does that make?

I had to place my father in a care facility when he lost his sight to a stroke. He also had frontal lobe dementia. He only had Medicaid to cover his costs. The first place we had him was a living hell—filthy, understaffed, negligent. I lived close by and advocated regularly, which made them angry and they threatened me with evicting him. Which legally they couldn’t do. After 6 months, we found an Adult Family Home for him an hour away from me. His state social worker initiated the process of putting him on a list and an adult family home reached out to me to see if he would be a for for their care. They have 5 residents, he has his own room with his recliner and tv. And they treat him like a respected grandfather. His social opportunities are scarce, but my father isn’t social nor cares to be. He is always well-groomed and clean no matter when I stop in. If they offer him a meal and he declines, they will circle back a couple of times to try to encourage him to eat. If he’s not hungry, they will off a snack, juice or some ice cream. The food is good, nutritious and visually enticing. And, they make him his favorite breakfast every morning. They are very responsive to communication. If I text them, I usually hear from them within the 1/2 hour.
All this to say, you have to do your homework. It takes a lot of advocation at the beginning. There are advocates that will help you at no cost. They are invaluable and have a wealth of information.
Are you doing this alone? Or do you have siblings or other relatives? I have 2 sisters, although I am the “boots on the ground”. But they are supportive and we make decisions as a team, although I have the final say as I have Power of Attorney. You need a support system. If you get a good placement for her, your need to advocate will lessen. I trust my Dad’s team to take care of him and communicate with me. They have earned that trust. Don’t assume a facility will take good care of your loved one. Some don’t. I was shocked to find out than in the state of WA, caregivers were only required to give a short amount of direct care to residents. I can’t remember the exact number of minutes, but it wasn’t much. Some just rely on a locked door and the care is sub-par. The staff are overworked and underpaid, and if they make waves, dismissed. The turnover of staff is alarming.
If your mother will not have contact with her friends if she goes into a facility in New
York, I would advise placing her in a facility near you. Look into Adult Family Homes and visit any facility you are considering. Do the residents look happy or at least well-cared for? Is it clean? Is the food inviting? Are there social opportunities if your Mom needs that, and it sounds like she does. Does the facility smell pleasant versus wreaking of urine?
You don’t need to give up your life, but think of what you would want if you were in that situation. It’s a fine balance to care for an aging loved one and to take care of yourself. Look for support for both of you. I wish you success and hope in your search.
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Reply to Pshalom
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Hi -
I was in the same position as you about 6 years ago. I was guided to the country social services in the county she lived in. A wonderful woman walked me through the process.

Things I remember is, in order to get financial help, she couldn't own a home, a car, a life insurance policy, or have more than $100,000 in her bank account. Well, the last one was absolutely no problem!! She lived with me so she didn't have a home. She no longer drove, so she didn't have a car. She had a $3,000 life insurance policy. She had to cash that in and give it to the home. Once that money was gone, (in a month!) the country started paying for her care. Every year we have to re-apply (because you know, she may have started a business while living in the Alzheimers Home and generate $100k! [sarcasm] ).

Once they determined she had no funds, the social worker started reaching out to homes to see if they had any rooms for free/reduced pay. Turns out the non-profit homes all have a % of rooms for free/reduced pay. At least they do in Minnesota (where my mom lives).

My mom got in at an Episcopal Home. (We are not Episcopal.) She did NOT want to go in the home. She had fallen 3 times and broke both hips and a femur. She was moving into dementia. She moved from a hospital, to a rehab and then straight into the home, so that made it easier to get her there.

It is a wonderful home. I could not be happier. They said it usually takes about a year for someone to "settle in". It took my mom 5 years to stop asking to come home. So every visit broke my heart.

A few ideas for you:
- Contact County Social Services in the county your mom lives in and tell them she is a resident of the county and you are seeking help for her.

- Contact the preacher at her church and see if they know of any helpful services in the church/religion she belongs to. Don't worry about her friends not coming to visit. She'll make new friends in the home. I promise. And if she has dementia or Alzheimer's, she may easily forget these "friends" who say they won't visit her.

- Contact all non-profit/religiously affiliated homes and ask if they have any discounted/free rate rooms? If yes, ask them what they look for, what agencies they work with (so you can register with those agencies) and any suggestions for you. Then reverse-engineer the process to get her in.

BTW - the home my mom is in is NOT in the county she lived in. The county she lived in pays the county the home is in and the county the home is in pays the home.

I don't know if any of this helps, but I hope so. I couldn't leave my business to care for her. My brother is "too busy" to help so it's just me. (Like you.) And as you say, you can't put your future on hold for the time she has left. Our society makes you think you should stay home and care for her, but none of them think a man should. Do NOT feel guilty. Do NOT feel obligated. If you love your mom, do whatever you can to get her settled in somewhere. IF she owns a home that needs to be sold to pay for her care, sell it. Yes it hurts. Maybe you and your siblings thought you'd split the money from her home when she passes, but it is today that she needs help and if no one can pay for it, then there isn't another answer. Quitting your career is NOT an option.
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Reply to FLStacey
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I am caregiver for my 95 y/o aunt. She lived alone, an hour from me, and in 1 yr, her neighbors found her on the floor 8 times. She was also starting to tell me things that didn't add up. I realized it was time to find a facility. A Place for Mom was a huge help referring me to several places. She is in MC and I'm happy with the activities to keep her engaged. A Place for Mom will ask about finances etc and can help you decide. Good luck. We are here for you
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Reply to Mrsd123
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FLStacey 18 hours ago
A Place for Mom only helps if you have money to pay for a home. If you need any financial assistance, they say, "sorry we can't help."

Not faulting them for that - just sharing.
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My mom has excelled in SNF..MC provided little to stimulate her. Most everyone had ALZ …She has Lewy Body and now has friends more like her. They chat walk around together and socialize. Our family is so pleased with the change…first time I have felt relaxed in 5 years! Ps: decline is expected with dementia..my mom had declined greatly just in MC alone…she was isolated there!
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Reply to Sadinroanokeva
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It seems you are really putting a lot of thought into this and it doesn't help to have other people offer input that contradicts what you have decided is the most sensible thing to do.

If you can take a little time off from your life right now, that is, your job, and your usual activities and responsibilities, I agree with the MC who suggests you take a little time to find a better fit.
If they are reluctant to take her, that doesn't sound like a place you will be comfortable with leaving your mother.

Expand your search to outlying communities, and near your home.

I am curious, how she will be paying for memory care. Is this a facility that accepts Medicaid? That does make it a little tricky because Medicaid is typically administered by Counties, and you may have limited options within her county.

I think if you start by finding a MC facility that is to your liking, and seems like a good fit for mom, and they would welcome her, talk with their social worker, or director of admissions, about her ability to pay. They have many patients who can't afford the cost, and may even accept her now with a Medicaid application pending, if she qualifies.

And, yes, there is a possibility that she will experience a decline.
You know that you will not be able to care for her adequately at home.
You are smart to make that decision now, and not after taking her in or setting up community services for her which will not be sustainable.

You are doing what you can to try and meet her needs. There is no perfect answer. The family or friends who want to keep her living in the community, but with no solutions for how that can be achieved, are thinking of what's best for them. You need to make the decision that is most sensible and sustainable for you and your mother.

I would suggest you try and find a facility that is closer to you, or another family member, or a friend who has the time and is willing to go check on her regularly. If she does start to decline, and the facility is calling you all the time, you will be frustrated and feel helpless that you can't be there.

Good luck to you.
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Reply to CaringWifeAZ
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Dear Troubledson00
I also believe that people working in facilities or who work in home care should do a good job because they care about doing a good job.
After saying that, I am adding that a heartfelt "thank you" and acknowledgement of a nurse or an aid that shows a patient kindness and consistently does a good job in caring for the patient is not just a social interaction or a bribery for better care.
As you know, caregiving is difficult. And caregiving in facilities is busy and understaffed. The folks who do it genuinely want to do a good job because they know that their patients are dependent upon them for the quality of their day.
As you know, there's a difference between overseeing your Mom's facility care by asking how she's doing and what activities she enjoys, and coming in like a boss.
If you plan on visiting her often, place her close to you. If you wish to have more FaceTime or Zoom f
visits with her, and video or phone conferences with staff, then place her close to where she already lives and encourage her church friends to continue to visit often, if it is the travel distance from NY to PA that is the problem. You can let them know how to contact you with any concerns.
I hope this helps.
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Reply to JanPeck123
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Troubledson00: The nature of dementia is that the patient will decline, of course.
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Reply to Llamalover47
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She’s only 62? So she has early onset dementia? If that’s the case you definitely should place her because you are young and this can last a long time. Good luck.
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Reply to JesusSustains
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I tremendously appreciate your situation, to which you have clearly given a great deal of thought.

I was a palliative and hospice volunteer at an SNF for quite some time and generally speaking, I saw a very quick decline in patients who entered the facility. It's mainly due to a feeling of being isolated and abandoned. I remember there was one gentleman at 95 years old who came in still in his right mind and vigorous, but within a couple of weeks he was almost a shell. Of course, it depends on many factors but again, generally speaking, when a person is placed in a facility, the will to live can greatly diminish in a relatively short period of time.
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Fawnby Dec 24, 2024
That's assuming that family and friends never or seldom show up to visit. It's often the case, but not always. I'm with my husband for at least 2 and usually more hours per day at his memory care facility. He is doing well there except for the expected decline that goes with his condition. He enjoys the attention of the aides, who are friendly and like him a lot. He also likes socializing with his friends there who are at about the same stage of dementia. At home, he only had me. Also, the employees bring their dogs to visit, and LO loves that. Children and grandchildren of the employees are encouraged to pop in to say hello to the residents. A music school put on a Christmas recital there last weekend. It's all so much more involving and stimulating than I could do at home.
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We all have to make that decision to place our loved ones in assisted living. Not sure why you're being advised not to. Also, why her friends will not visit. You can still advocate for your mom's care. It's terrible that you're not receiving any support. Unfortunately, they aren't true friends. Have you thought about selling her assets and moving her to a personal care facility near you? Also, if your mom qualifies for Hospice Care in the future, both Medicare and Medicaid pay for that extra care. Try looking into department of aging resources nearby.
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Reply to Onlychild2024
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Just move ahead with your plan. If they don’t have a concrete, REALISTIC alternative, tell them that’s not helpful and continue moving ahead. You aren’t signing any contracts in blood. Get her moved and placed and see how it goes. Adjust as necessary. Tell her team you’ll adjust as necessary but you first need her placed near you, not a flight risk at home, in danger, in another state. Period.
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Reply to ShirleyDot
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You do what is good for you. My cousin promised his Dad he'd care for his Mom. Who was to know she would contract Dementia? No one in her family had shown signs and one sister lived to be 87 the other 98. Other siblings lived till mid 70s. He owns a business and at the time was in his 50s. His working helped her keep her house. He tried the community thing but he only got 8 hrs. Meaning he could not leave till the aide showed up and get home before she left. Otherwise, Mom would be home alone and eventually that could not happen. So he had to place her.

My Mom did better in her AL and later LTC than living with me. There were activities at both places.
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Reply to JoAnn29
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Mother did not suffer a decline when she went to a Nursing home.She went to AL in her late nineties and into NH when she was 105. I don't think it is inevitable. I think Geaton's suggestions are great.

Not sure how old your mother is but if she is an escape artist she needs care that is safe That comes first and I agree quality of care should not depend on you having to continually advocate. I was a distance caregiver and kept in touch or the staff phoned me when something happened. I visited about 4 times a year. Mother had good care.
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Reply to golden23
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Very common; part of the reason her medical team is advising against it. Since there is a little time, have they helped/suggested alternative ways to keep to keep her out of the facility?
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Reply to cover9339
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In my uncles case I did see cognitive decline but truly believe it isn't associated with being in LTC. It is a natural progression of his dementia and it just coincides with his living situation. And if the change did contribute, There are major positives that offset his decline. Saftey is number one. He is not falling out of bed and having to lay there for hours because he forgot he had an alert button. He has socialization opportunities. Although at first he resisted because he refuses to believe he is Long term, He has a great relationship with many staff members. He has well balanced meals. He isn't in isolation in his home for days if weather is bad. I could go on but you get the list.

Please don't be discouraged by placement. It is for the best for all involved for your families situation.

Perhaps talking with a therapist and processing your feelings for this life changing event for you with is warranted. And don't discount the suggestion of a mild anti depression medication for you. It is not a sign of weakness and can help tremendously. You are young and need to maintain your mental wellbeing as much as helping your mother.
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Reply to AMZebbC
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I'm sure you've probably looked at more than 1 facility. In case you haven't please research faith-based ones. My MIL is in an excellent non-profit faith based facility (LTC, on Medicaid). The organization does national fundraising to cover some of the cost of care so it is less expensive than more other places. They view care as a mission, and my MIL gets excellent care and attention there.

I'm in the upper midwest so not sure where to point you specifically, but you can contact national headquarters for various denominations to ask if they have facilities in your area. My MIL is in Presbyterian Homes. She was never a Presbyterian or even attended any of their churches. Most places don't care. Also call the Cartholic Church (many facilities here where I live).

I totally understand the frustration of the care situation. My 95-yr old Mom lives next door to me. My 89-yr old MIL is 3 miles away in LTC. My 105-yr old Aunt is states away in FL and I manage her in-home care. We were also overseeing 2 other elders who have now passed, all in different situations, all ending differently.

I wish you success in getting the best possible care for your Mom. You will learn a lot on this journey that you will be able to apply to yourself so you can have the best aging plan possible.
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Reply to Geaton777
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“Her needs can be met in the community” is such a lie to get you to take your elder and go away so they don’t have to deal with it.
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Reply to anonymous1784938
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Confusion and/or agitation is common after placement. Decline does not automatically go with the territory. My mother did not suffer a decline at all after her move into Memory Care Assisted Living from AL.

When you posted last about your situation, your mom being 62 or 65, you said both, and suffering from dementia, we responded to you with overwhelming support to go ahead and place her. You have little choice. I've honestly never head of such insistence from the medical establishment on "community" care because that's nonsense, and we all know it. "Community" means YOU and you alone with support from nobody.

You also said you're not even sure you want to be moms advocate. I strongly urge you to rethink that. Sure it can be stressful at times, but what facet of life and love is not stressful? Loved ones left alone in the system with nobody to look out for them can wither away. Be mistreated or ignored. We all need someone that cares about us to be our voice when we ourselves can no longer use ours.

There are folks here who will tell you to let the state take over moms care. I disagree with that advice. The staff bucks up when they know a son or daughter is coming in to see mom and make sure she's in good shape and being properly cared for. When you praise and thank the staff for their efforts, they feel validated and often take extra care and attention with mom as a result. You don't have to devote your life and give up your career to caregiving, but periodic check ins are a good idea. I used to do it all the time because I was local, and bring food and snacks and gifts to mom while she was in Memory Care Assisted Living.

Ignore what the medical community is saying to you, and tell them you're doing your best right now. Lay off the guilt trips please, they serve no useful purpose.

Your mom will be fine. The human spirit is amazingly strong and resilient and fights TO live rather than die. You're making the safe and sound decision for mom now, rest assured. With dementia at play, we have to choose the lesser of the bad choices. And that's a fact.

Good luck to you.
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Reply to lealonnie1
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Troubledson00 Dec 15, 2024
I guess my issue is if I am going through the hassle to place my mom the quality of care should not be dependent on her having a voice or someone checking in like some boss. That is also the thing I am not the type of person to thank someone for doing the job they were hired for. If that is the type of advocating she will need to get decent care I do not think I can do that. I am not about those social interactions.

That desire to live is woefully unfair and arguably selfish when it is predicated on the time and energy of another.

:) Reason I don't have children and don't have a desire to have children. Kid's at least if you do a good job become self sufficient with time. My mom is only going to become more dependent as time goes on.

Was a typo she is 62 could not change it since the edit button was no longer available.

Thanks.
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ANY change can cause a decline.
You might be able to lessen the decline if she is used to the place and the people before a permanent move.
Do they offer a Day Program? If not would they consider taking her as a Day person for a few weeks?
This would give you a bit of a break and get her used to the people, the facility and the routine.
If this is a possibility then taking her the day she becomes a resident would be a lot easier.
Placing a LO is not an easy decision and I am sure you have struggled with this. So PLEASE do not let anyone make you feel "guilty" in placing mom.
If her medical team feels that strongly that she will do better "with her needs being met in the community" then they can take turns taking care of her until she reaches a point where they feel she will do well in a MC setting.
It is comments like this from "medical teams" that do nothing but make people that have come to this decision feel even worse about the process.
You are doing what you need to do to 1.) Keep mom safe 2.) Maintain your own sanity and manage your life.
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Reply to Grandma1954
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