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She was admitted 2 days ago and has spent 2 nights there. She has had several TIA'S. We went to see her at admittance time as I had to sign to admit her. She was very sweet and pleasant in her bed. We have been told she is refusing meds and rehab. Also refusing most of her meals. We went to see her yesterday and she was like a different person. Seemed very depressed. My heart is broken. I am very devoted to caring for her. She lives with my brother and me and we care for her 24/7 and if we need to get out for shopping etc we have to get someone to be with her. We don't want her to suffer anymore. Can we take her out of this place and take her home? Also yesterday my brother noticed her thick stocking was soaked. Nurse took her stockings off and that foot swollen. Only excuses from nurse. Want her home so we can give her care she deserves. Thanks to all in advance.

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Clearly those doctors don't understand a lot about dementia! It is great that you were able to take her home. Once she is settled back into a routine (with the stroke, hospital and rehab, she might never get back to where she was prior to the stroke) you can consider asking for some in-home OT/PT, if you think she needs it or it might help.

Mom (dementia in MC) did "okay" with OT/PT the first time a while ago, but since she started refusing to walk and expressing fear of falling when she tries to stand, they recommended OT/PT. She would NOT work with them, not one minute. They would walk away and come back in a few to try again. The last attempt she basically told them to do what they wanted her to do! They signed off (Medicare won't pay if progress isn't made) saying 'goals met'. Seriously? What goals were those???

They can't force ANYONE to do what they don't want to do, even those with dementia. They can try, they can coax, but they cannot MAKE them do anything. So, if she does well at home, that is the best place for her. Just the unfamiliar surroundings, faces, noises, etc at rehab would be disturbing and disruptive to someone with dementia (never mind a stroke on top of that!)

So, do give her a little time, and if you feel she could benefit from a little OT/PT, request that from the doctor, but specify in-home. If you sit through the exercises while they work with her, you can help her practice during the day, to build up strength/flexibility. If she won't work with them at home, they will sign off and stop, but Medicare should cover the cost.

I think our mother's biggest problems are weight, bad knees and SITTING all the time! Can't get her to do anything though and trying to remind her that if she doesn't use it she will lose it doesn't work.
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Her physician can write the discharge to home under your care. The rehad/PT is for $$$ not for your Mom's best interest. Not saying that ambulation, stretching and other physical activity isn't important but, daily life is therapy if she's not bedridden. Don't ask and don't take no for an answer.
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My Dad was in Rehab last year at age 97...he hated the first few days/weeks. Told everyone he wanted to get out of there. Finally he settled in and was more alert and happier. It takes awhile for them to settle in. When his rehab was finished and he was sent home..he wanted to return the same night. He prefers not to live with my brother or I and is currently on a waiting list for assisted living.

I would definitely give your Mom more time to settle in, does she need an antidepressant, they work wonders. Try to put a positive spin on it..I dragged my Dad out of his room many times to attend activities..check out the activity department. He loved the age appropriate music programs and several other activities.
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Call hospice.
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Since rehab is apparently not working, bring her home.
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Personally, if it was my mother I would take her out pronto. She will do much better at home. You don't have to follow what the hospital recommends, nor do you need the approval from the rehab to take her home. Can't she get visiting nurse care at home since she was in the hospital--Medicare pays for it (for awhile anyway) and they can do rehab at home. You cannot trust hospital, rehab, etc. to always do the best for the patient. With my father, every time things went wrong I made such a stink that they were sure not to do anything wrong again. You have to be her advocate and follow your heart.
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If your mother's condition is relatively stable, I think the physician involved will accept your desire to take her home. This may be the time to address her prognosis and discuss DNR as well as hospice. Perhaps you could start with home care and then transition to hospice services if her condition does not improve. Both you and your brother deserve heaps of credit for caring for her. It isn't easy but the peace of mind knowing that you did as much as you were able is invaluable.
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Bless you and bro for caring for your Mom...Rehab usually waste of time for patient with dementia...they never cooperate...As far as leg stockings being wet, legs probably swollen & circulation problems...possible DVT clot? While she’s in hospital, insist on her getting MRI of both legs...& to be seen by Vascular Specialist. As far as TIA’s a neurologist should also be consulted. While she’s in hospital this should be done. Instead of taking her home & then dragging her to this dr & that one. The TIAs probably caused dementia...my mother had that happen. She also had problems with her legs. Dr put her on blood thinner. You’re so lucky your brother helps you!!! My advice is to tour SNF near you so you can visit as often as you want. She’s probably going to need wound care too because of legs. She can go there from hospital. Take care of you too! Hugs 🤗
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Good answers below. It sounds like she belongs at home with hospice care. In my opinion, a person with advanced dementia will have very little benefit from rehab. My mother is in a similar situation. She doesn't understand instructions and doesn't follow instructions. She hated being in the hospital. We took her home and changed her medical directives to "no hospitalization." She is getting hospice-type care now, keeping her comfortable and not trying to "fix" things.
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You can say no to rehab.

Bring her home and have hospice evaluate her.
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Just do it. Sounds like you are either next of kin or have POA for healthcare. Very wrong imo for hospital to automatically shove her off to rehab without considering all angles, though maybe it would give you some respite. I'd investigate and call the best hospice program in your area for a consult and get her home if you are all up to the challenge...and demands.
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OP posted she took Mom home.
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Just one woman's opinion: take her home.

My mom fell and was sent to rehab after the hospital. Because the hospital kept her for three days and nights but did not admit her, we had to pay the full freight for the rehab. $15,000 per month--and they kept her for two months. Ouch!

The rehab was incredible--they charged if she took a breath and again if she exhaled it. they charged for touching her! the bills were five pages long.

And for what? She lays in bed all day now as she did before. She walks to the table with a walker and goes back to bed. She gets help with everything as she did before. So why rehab?

If you put your mom in that rehab, you are giving up all kinds of control. If she is as bad as you say, don't do it!!!!!!!!!!!!!! Let he go home and rest and be pampered.
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JoAnn29 Oct 2019
She was there that long because u paid out of pocket. If there had been no money, they would have discharged her.
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My husband was in rehab after a 4 day stay in hospital for a UTI. What a mistake! The facility itself was so dreary and unkempt, Because he was a fall risk, he was left in a wheelchair other than his 90 minutes of therapy. I finally got him released after 3 weeks altho they wanted him to stay for another 3 wks. He came home with bedsores on his bottom, very weak, and down 20 pounds. It was the most demeaning, depressing experience he’s ever experienced. The plus side was that it gave me a break altho I traveled 30 miles one way every day to visit him. He is in the hospital again, and I’m sure rehab will be brought up again. I will fight to bring him home with therapy and home health care. If possible, rehab is best at home.
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Judysai422 Oct 2019
My mom went to a brand new beautiful rehab facility but it was still very disorienting for her. The next time, we told the hospital we wanted home health for rehab. SO MUCH BETTER! She got the same care but on a schedule that worked for her in an environment that was familiar. She recuperated faster and was never disoriented. If Bayada home health is available, they were great for us.
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Time for a care plan meeting with the staff. Make sure doctor, social work, and an administrator present as well as representative for nursing staff. Explain your desire and how they can help you work towards that goal.
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Talk Turkey to a Supervising Doctor who May Make you Sign Something due to you Releasing her. Quite Often, In cases such a This, The patient does better at Home with a Cup of Kindess.
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Of course you can take her home. Rehab or nursing home care is not mandatory. If you have the people in place at home. (you and your brother) and hired help if you need it then there is no reason she should be in a facility. Unless there is a medical need that you can't handle she can be home. Talk to her dr, tell him what you have in place and have him write a discharge order. If he does not want to do that you can discharge her AMA, against medical advice. I did that with my mom after one week in a rehab after she broke her hip. She was dressing, toileting and moving around without any help so why stay? They didn't pay any attention to her and she didn't use the nursing care to dress or toilet or get out of bed. I got the physical therapy to come to the house instead. So much happier and easier.
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Older people with dementia do not do well in strange environments. You do not have to do what they say. She will pass due to weight loss and fear. Those places are so stressed with over worked staff it's the residents who suffer. You can take her home anytime you want by signing her out against medical advice. I did the same thing with my mom after my so called half sister and brother put her in a rehab. I'm an RN of 30 years so I know...I arranged 24/7 help at her home and she passed comfortably in her own home after losing 30 pounds in that rehab. It took me a month to get to her from another state...do what you need to do. The only way they can stop you is with a court order....good luck
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I would consult a hospice and take her home. My mom broke her arm and went to a 5 star rated NH for rehab and it was nothing but torture for her and she developed a stage 4 bedsore that they never mentioned to me! She was rushed to the hospital with delirium she developed there from a UTI and the hospital nurse asked me about the wound. I was stunned. I had also kept asking NH to test for a UTI, and it took them days to do it. Mom was only in this place for 3 days before she was rushed back to hospital with delirium from the UTI. Life got better after I took her home on hospice as they were helpful and compassionate, not neglectful like this 5 star rated lie. At my home she had her own room, bath, TV and classical music, not people barreling in and out and TV's blaring all night like in NH's.
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As others have suggested, tell the hospital you would like a pallative care/hospice consult. You are correct that at her age with her conditions rehab is/will be essientally (to her) torture and, frankly, not successful (she cannot remember instructions). Bring her home with hospice and let her be as happy as she can for as long as she can, with their help. You are wise to be thinking of what is best for HER, not what makes the doctors and nurses feel like they are doing something to help.
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Just sign her out and take her home if that is what she wants. Rehab will achieve nothing positive if her feelings and happiness there are negative. One wonders what they expect her to improve to being able to do at 91, let you LO live what life she has left as she wants to clearly they are adding nothing pleasurable to it for her.
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Hi to all and thank you for your replies.
My mom was so sweet the first day admitted to rehab. In her bed, smiling and
talking to my brother and me. The next day went downhill so fast. Not much eye contact, hardly talking, having to be fed, that is, if she would eat at all, grabbing workers jewelry if they tried to work with her, etc. I knew this would not work out as at 2 previous rehabs she stopped taking meds and refused rehab, etc. I tried my best to have her not go but hospital so insistent.
Well, yesterday on her 3rd day there I told myself I wasn't going to allow them to make her suffer. I called and at first was told I would have to sign to release her going home against medical suggestions. I spoke to social worker and she spoke to Dr and he signed to have her released.
She was so sick last night; much worse than in hospital. So she wanted to come home as usual and we did take her home. She still is confused and we're hoping she will be on road to feeling better. She did take her meds after leaving and is still comfortably sleeping. Hoping today will be a good or much better day for her and will continue giving her her meds, good food, and trying to get her back to normal state. 😊❤
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MAYDAY Oct 2019
Happy music... even if its wheelchair dancing... hold her hand and DANCE.......

happy treats... and know she knows she is loved....

Mine passed at 90.. And I still blame me......

But my FIL who passed away many moons ago,, always told me... These bodies are not meant to live on forever......

I Love You Mom....
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You are very fortunate that you have a tag team, You and Your Brother.

Take her home.. It's okay, she's your mom, and you two know best...

Get her back to her normal
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Take your lovely mum home where she can enjoy meals, take her meds again and have a chuckle whilst doing rehab exercises with her. As long as you can confirm that her needs would be catered for there’s no reason for her to remain in hospital or go to hospice
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Hospitals do what they do, What rehab really means is that there is no treatment that they can give her to improve her condition in the hospital.The word "rehab" is misleading. They will put your mom through all kinds of things that she does not want to do. They are not being terrible. They are just doing what rehab tells them to do.
Take her home. She does not need to be rehabilitated. She needs to be kept comfortable. She is 91. If she needed 24/7 care before the stroke,then the best rehab could ever do is to restore her to the state she was before the strokes. Medical people will tell you that one never knows how a neurological patient will recover, but at 91 and with advanced dementia?
Call hospice.
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Take her home. Rehab is horrible for Dementia patients. They are scared because everything is confusing and unfamiliar. Therapy is maybe 2 hrs a day and the rest of the time they sit them in wheelchairs if they r a fall risk. I wish I had never agreed to rehab for Mom. I swore I would never do it again. She can have therapy at home if her PCP orders it.

I would also ask him about Hospice care. Having numerous TIAs is not good. She will be so much better at home.
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NeedHelpWithMom Oct 2019
Therapy was more than two hours for my mom. Started right after breakfast. They worked until lunch. Went back and the therapy lasted until about 3:00 in the afternoon. It is tough! It helps though. I am a big believer in therapy.

The therapy that mom received was excellent. The physical therapist and occupational therapist are very dedicated to helping those with Parkinson’s. It absolutely helps. There aren’t any distractions in a nursing home. It is total concentration on the exercises.

It’s more intense than home health. I guess it depends on what is needed.
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Is she on hospice care? In my honest opinion she would be better off at home where she is compliant taking meds and eating. If she's not eating and taking her meds as prescribed no amount of PT will help her. Is PT for walking and or communication issues since her TIAs? If so hospice will have someone come out because of walking, balance issues to reduce fall risk. Sounds like she would be a candidate for hospice care if she's not enrolled at this time. Speak to her primary physician about it because of recurring tias combined with dementia do put her at a higher level of risk. Just remember, hospice will not seek out a cure for her, they do not offer daily care, that's still on you. She will have a weekly nurse visit, cna 1 or 2 times a week for bathing (shower) assistance, medication prescribed by her physician, instead of monthly its every 2 weeks. Their goal is to allow the patient the best quality of life possible, with dignity, respect, and pain free. They will not provide any life saving cures and will require a DNR in addition to no extraordinary life saving directives, ie feeding tube or ventilator. Oxygen is fine, IV therapy is also acceptable, also makes it easier to administer medications if needed. If on dialysis, patients are encouraged to continue their treatment. Her stocking was soaked because of a swollen foot? Ummm I don't think so. Could it have been urine, spilled water? What causes her extremity swelling? Heart, diabetes, or something else? Not a good situation for her or for you emotionally. Emotionally in her head home is where she's less confused and her safe zone. Let us know what happens.
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Is she doing well in rehab? Is she compliant with the therapists? My guess with advanced dementia she may not be able to follow instructions easily nor will she be able to retain what is requested of her.
I would discuss this with the doctor.
If she is otherwise stable and if you think rehab is doing some good you could request in home visits from the therapists.
If the doctors believe that you and your brother can take care of her, and if she had no other health problems (other than the dementia) prior to her hospitalization I would not see why they would think you can not care for her.
Another option would be to contact Hospice. Once she is on Hospice therapy is no longer a service she would get. She would be discharged to home on Hospice.
Hospice will help you care for her.
Hospice will have a nurse come in once a week to check her, a CNA a few times a week they will bathe her, dress her, order supplies. It is an Awesome service and it is covered by Medicare (and Medicaid as well as other insurance providers)
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Did your mom ask about taking stockings off? My mom wasn’t wearing them in rehab. I told mom to wear them. She told me they didn’t say she had to. I kept telling her that she wore them at home so she needed them there but she wouldn’t listen to me. I wasn’t going to force her and have her cause a ruckus in front of the staff.

The nursing home staff did not encourage it even though I told them she had terrible edema. She suffered afterwards from not wearing them. Get them back on her if possible.

My mom’s nurse’s excuse was it ‘wasn’t in her records to wear them’. Geeeeez. Yeah, I get what you’re saying about the staff. I kept asking for them to do it. They ignored it. It was in mom’s records that she suffered with horrible edema. So I suppose it has to be a specific order for them to implement placing the compression stockings on a resident regularly.

Anyway, I would call her doctor and ask him/her to send over an order to place the stockings on her. This way there is an order that should be followed and a paper trail. I should have done that but I was dealing with a few other things as well. I was trying to tackle one thing at the time and I couldn’t make everything happen. I tried to be a good advocate for my mother.

Also, ask nicely. Hope that they respond. They are often understaffed and unfortunately some things don’t get done. Clots can occur if stockings aren’t worn plus the swelling is uncomfortable. Does she have the proper size stockings? This is important. Those darn things are a pain in the butt to begin with and the wrong size only makes it worse and can even cause a bigger problem if circulation is cut off, not to mention major discomfort!

2 days isn’t a long time. Give them a chance and if not let her doctor step in if he/she or his nurse would be willing to handle the communication with the staff at the NH.

Best wishes to you and your family.
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