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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?

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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