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?
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.
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.
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.
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.
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.
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.
My Mom did better in her AL and later LTC than living with me. There were activities at both places.
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.
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.