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Mom has mild dementia and seems "normal" most of the time, but lives in a rehab/nursing home (2 months) because my siblings and I work and can't be with her 24/7. We all visit daily and take her out on weekends, but stopped taking her out because whenever we return, she screams and cries that she doesn't want to go back. Now, even when we take her outside for fresh air, she cries and screams that she doesn't want to go back inside. We can't afford private care at home and we are so heartbroken because she is so heartbroken. She is so distraught that she constantly threatens suicide and just keeps telling us that she wants to go home. This is all so new to us and we can't figure out how to handle this. Anyone have any advice? Thank you!

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Wow, you have such fabulous advice below. Sounds like you intend taking it and getting a full assessment. The Filial laws are well worth considering as well, with PA being one of many states that have it, and one of few that is actually IMPLEMENTING it and charging the kids for care rendered to the parents.
Good luck and hope you will update us.
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Good Morning: 5 yrs ago I had to make the awful decision to move my Dad because He was falling. I had no help from my siblings, I worked.... the Social Worker from the Hospital told me I had to do something, Was not a choice I wanted to do... Was in the same shoes as you, as far as paying for in-home care which is not covered by insurance. Drives me crazy when I see these commercials about home care and they "forget" to mention cash base only! I look at many as I am sure you have....A friend told me about Where her Mom was.."Adult Family Home" It was a blessing in disguise...About Family Adult Homes. They can Only have 6 individuals per home...You can request a private Room, which I think really helps, because you can move things your mom has in and make it cozy. They make home cook meals tailored to the client. I was told by Social Workers from the Hospital...that it is normal for the parent to be very upset about moving...It really sucks and my heart goes out to you...One thing make sure and always visit your mom...I know will all have busy lives, but you will never have regrets
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Stephanie9 Sep 15, 2019
I never heard of Family Adult Homes, but will check it out. Thank you!
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You have gotten some very insightful answers here. I don't really have much to add, I only want to reinforce the Overdoing the visits, she will never adjust anywhere if everyone keeps running over there every day. Being "Helicopter Caretakers" is a large part of the problem. I wish you the best!
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Stephanie9 Sep 15, 2019
Thank you. She keeps telling us how she hates that we "dumped" her there and thought that we were helping by providing her as much support as we could....at least in the beginning. We have already begun weaning our visits....at the very least, making them shorter.
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Before you make any additional changes, find out from social services whether there is a trained geriatric psychologist/psychiatrist on site who can see your mom in her present quarters.

Our facility has a wonderful, gentle woman who has been very helpful to our LO, and has used cautiously prescribed, very small doses of medications to increase her comfort and reduce her unhappiness.

The term “mild” dementia may or may not be specific in describing her present behavior, but very few clients in AL adjust easily or quickly.

Consider also that her desire to “go home” may be non-specific as well. “Home” may mean returning to her life 50 years ago or something more recent or whatever she visualizes as a place in her damaged memory.

After having been in her AL for about 3 months, our LO fell and broke her wrist, and we needed to take her to a very nearby doctor when the cast was removed. She took the trip fairly well, but was exhausted and relieved to return “home” after her examination was finished.

She hasn’t left the facility since, over a year. She will SAY she wants to go “out”, but demonstrates that she actually prefers to stay where she is.

Try, for your own well being, to observe her sadness and anger without being a part of it. I understand only too well the role of watching a person with dementia suffer, but try to remember that their suffering is tainted by their inability to impose rational thought on what is happening to them.

I’d do anything possible to prevent episodes of “crying and screaming”, including postponing trips away from her residence for a while.

You and your family are doing your job if you are providing a clean, pleasant, SAFE place for her. If she is not SAFE at home, you are doing the best that is available to her and to you.
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Stephanie9 Sep 15, 2019
Thank you for your support!
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If a nursing home is not medically necessary, Medicaid will not pay for it! Then children could be made responsible. And it does not sound like it is medically necessary and could be considered an attempt to defraud.

It sounds like your gut instinct is "no mom does not belong here". Trust it.
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AlvaDeer Sep 15, 2019
Wasn't aware that the Mom has no dx of dementia. Seems the best judge of whether she can or cannot be left alone with her mild dementia would be the MD assessment. Am wondering what led family to believe she is unsafe at home?
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Gladimhere brings up a good point - she needs to get a clear diagnosis from a specialist who can make an evaluation of her capabilities. It is an unfortunate fact that many doctors see seniors and immediately write them off as in need of a facility (or worse, palliative care) without bothering to understand their history or what their life was before they met them, you can't trust the advice of any doctor that doesn't have a long relationship with her.
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Stephanie9 Sep 15, 2019
I agree. We'll look into that, also. Thank you!
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I do not say this lightly. You need to get mom out of there. She has not seen a geriatric physician or a neurologist. There could be something going on that is treatable. Frankly, I think I would find a way to leave if it were me.

She may be fine at home with visits from her children through the day, physical and occupational therapy, just as you are doing now. She has been in rehab for two months, that sounds like more than enough. Is mom on Medicaid?

Heck, the mild cognitive impairment could easily be caused by being very disoriented being in this nursing home. Hospitals and rehab are very disorienting as we age and will cause symptoms of dementia.

Get her out but make sure you have assistance she will need, temporarily, until she is back to normal.

Pennsylvania is a filial responsibility law state. The nursing home, if not paid, could come after the children of the resident to pay her bill.
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Stephanie9 Sep 15, 2019
Her rehab only lasted the first month she was there. Nurses are supposed to walk her daily from now on, but they're too busy. They don't even let her walk with a walker. All residents "walk" in their wheelchairs with alarms that go off when they stand up. She is currently applying for Medicaid. But, from what I've been reading, Medicaid will only pay for Nursing Homes and maybe some expenses related to Assisted Living or Memory Care in Pennsylvania. This whole procedure is so overwhelming.
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Where was she living before? If she was independent then the move is particularly jarring, if you imagine yourself in her position you will understand just how disorienting such a move would be for anyone, the dementia just amplifies it.
You mention that she was there for rehab and you then decided to keep her there permanently - I wonder if you have explored other options/facilities? There were several people with dementia at my mom's nursing home and I felt pity for them; during the time I spent there I came to understand that although the physical care was very good for those who needed it the activities were repetitive and often childishly inappropriate and many of the residents paced the floors like caged animals or sat totally unengaged for most of their waking hours. For many there was no other option, but for some a good memory care could have made all the difference.
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Stephanie9 Sep 15, 2019
Mom lived alone at home with assistance from my sister who works full-time and lived next door. We are currently exploring other facilities, but in the meantime, we would like to keep visiting and taking her out as much as possible. She LOVES going out, but we wonder if we should stop for now because it causes her so much distress when we bring her back? Looking for ways to deal with this pain. Thank you!
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Would it be possible to see a Specialist or Geriatrician? (I'm not a fan of general practice doctors diagnosing dementia based on a couple of visits & a few falls - has her doctor noticed decline?)

Mild cog impairment varies greatly. Does she have mobility problems too? Can she still cook? Manage money? Attend to her personal care needs? Is there are hope she can recover from the falls & return home? Maybe assisted living would suit?

Sorry! too many questions...

My Mum hated the nursing home too (1 month respite stay). What she REALLY hated was having a stroke & losing her ability to walk & her total independence. Now home again with Dad - but she STILL hates it :(
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Stephanie9 Sep 15, 2019
Thank you, Beatty. We are currently looking to see if we can find somewhere else where she might be happier. Prayers to you and yours....
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There are 4 of us who visit 3 x per day. She never was really diagnosed by a specialist. Her primary doctor just blurted out one day that she has mild dementia. She wound up in the rehab/nursing home after a fall in the hospital, then fell twice in the nursing home which is why her doctor suggested that she stay.
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Consider not visiting as often. Give mom a chance to adjust to her new residence, make friends and trust and count on her caregivers. Each visit will cause reminders of how mom wants it to be another way. How many of you are there that visit daily?

Mom may eventually settle in, but may not. My mom never really did after two years.

Your mom was just recently diagnosed. A nursing home would not be appropriate care situation for someone with mild cognitive impairment.
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