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Mom is in memory care but went to hospital with a UTI that spread to the blood. They have to have sitters with her all the time because she keeps trying to get up, pull off her leads, and twice has pulled out her IV. She wakes up and doesn't know what's going on and gets panicky. When we are there I tell her repeatedly she's in the hospital and just had surgery and like a brat she says "So???? Get me out of here!" Eventually she settles. But it's over and over and over, and now they say she has to go to rehab after the infection clears. They don't do sitters so we're going to have to either sit with her all day or pay for 24-hour sitters. I'm mostly just venting but wanted to say this disease is such a nightmare, for EVERYONE.

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Why do you think you will have to pay for sitters in rehab ? Yes, things will be a struggle. Rehab staff is qualified to care for your mom.
Your mom may not make it thru the rehab period. My mom took the drs word to rest as meaning, she can lay in bed and not participate…I had to pull teeth to get her to cooperate….
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cignal Nov 2022
because she was in rehab once before and was essentially alone all day except for the one hour in the morning that they actually did rehab. the remainder of the time she would be up and down and wandering and fretting. previously rehab was for shoulder replacement but this time the rehab is to regain use of her legs, so they don't want her trying to get up without assistance because she'll fall. but she will try, again and again and again. maybe they have methods to deal with that and we won't need sitters, that would be wonderful. i'm fine going to see her once each day but not with sitting there for 12 hours.
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Cignal, I know you have posted to us, so forgive me that I cannot remember your Mom and her circumstances entirely. Only you know your Mom and know what she would want, but has there been any consideration of making your Mom DNR if you are her POA and of allowing nature to take its course without treatment?
When my brother got sepsis from a tiny but completely hidden and unaddressed non-healing sore on his shin he initially accepted hospitalization, but after the antibiotics were ineffective he begged me as his POA to get him out of there and allow him back home to his ALF on Hospice. This is what we did. He was facing down years of descent, at 85, into full blown Lewy's Dementia, and he was quite honestly ready to go, WANTING to go. And sepsis took him quickly once he was home.
At some point we are allowing out loved ones to suffer and suffer and suffer the torments to no avail. They will never again be anywhere near whole. They are being kept alive only to live a life of torture.
Only you and your family can make these decisions and they are horrible to contemplate. I so wish you the very best and am so sorry for all you are going through.
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cignal Nov 2022
thanks alva. my sister has poa and at the time it was set up mom was very much against DNR! She is a very panicky person overall and was horrified at the idea that she would be allowed to die under any circumstances. so at the moment it would be too much against her wishes to do what you did with your brother, though it would be the most humane thing for her and for us. i'm sorry you went through that, but i'm glad your brother had a peaceful death surrounded by family.
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We did the rehab merry-go-round so many times with my dad after hospitalizations for various things. Not once did I feel like there was a real benefit that justified doing it. The times he came directly home (or in your mom’s case, back to her memory care place) and had therapy come to him, he did just as well. On site rehab always consisted of a couple of hours a day of therapy with all remaining hours on his own. I can’t imagine if we’d been dealing with dementia as he was truly on his own. If I was you I’d insist on her going back to memory care where she’s safe, and have therapy come to her if it’s so important. And I’m not convinced it’s so important, it’s such a repetitive cycle with our elders, it becomes harder and harder oftentimes to see the benefits
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cignal Nov 2022
thanks very much, and yes i feel the same about this rehab idea. i don't think it will do any good at all for her to be there and will just be a huge stess on her and everyone else. i am going to see if we can insist she go back to memory care and have the therapist come there.
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Ooooh I know this one. Thank you for venting.

When my mom had ( another ) stroke, she was INCESSANTLY trying to get out of bed in the ICU. This was during the height of covid so the nurses had us FaceTiming and I saw it. I felt badly for her and the staff! And when I say incessant I mean every few seconds she was setting alarms off.

She has a DNR and since her second seizure she’s mentally mellowed a lot, but physically she is and has been very active and strong. Because of extreme fall risk and physical activity but lack of brain power she literally needs someone watching her every single waking second. MC is wonderful but they don’t have that type of staffing so I’m spending her money down on sitters. I’m basically throwing every cent of mom’s finances at this.

These ‘sitters’ are SAINTS and are really caregivers. They do so much and even then once the poor caregiver had to use the restroom and that is when mom fell. Mom was fine and got a bruise and I think the caregiver sitter suffered more.

That said I feel there really is no good ending to all of this. Physical strength is great and motivation to move is great but it’s like being in charge of a 180 lb zombie. Mom is too strong to die and not strong enough to really live. It’s a total nightmare and I really feel for your situation.

If there’s any way to pay for sitters I say go for it because it’s given me the gift of time and parts of my life back. No one person can handle a senior so active yet out of it. Lord knows I helped nurse my mom after a surgery and got two hours sleep in two days for example and the complaining never ceased. Not sustainable.

Excuse the babbling but this has been my reality for two years. I’m nodding at ya and sending you a huge hug!

PS: Just read more answers….yes mom went right back to MC after both her stroke and later the seizure. They have a sort of roaming PT there, and like I said mom is active anyway. Has definitely been the best call!!!
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cignal Nov 2022
thanks so much madison, good to know we're not the only ones! and that rehab at MC worked for you as well. i'm going to advocate for that. and the 180-lb zombie analogy is very apt! it's exactly what it's like, constantly having to redirect her. we had been contemplating sitters for her in memory care for companionship prior to this hospital visit, as it would allow us to not have to spend as much time there (one of us 3 daughters visits her every day for a couple hours) and this may be the final push in that direction.
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First of all, you do not have to pay for or arrange round-the-clock sitters for your mother. It sounds like she needs to have rehab and memory care.
If she's too much for a rehab facility to handle, the hospital can place her in a nursing home where she can get rehab during the day and be in memory care at night. She can rehab in a nursing home without the hiring of 24-hour sitters.
Why is she not on sedation in the hospital if she's pulling out her IV and get up?
Why is she not on anti-anxiety medication? One mg of liquid lorazepam stops the panicking almost instantly.
Please talk to a hospital social worker. Ask them about finding her a bed in a nursing home that can offer rehab services for her.
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cignal Nov 2022
thanks burnt. she's on many anti-anxiety meds including valium. mom's anxiety is a powerful force.
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Why would you pay for sitters for her? She needs to adjust and never will if you continue to helicopter over her. If she needs to be in a nursing home then so be it. These people are trained to deal with the likes of her, let them.
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cignal Nov 2022
Try reading the.post before replying, shes already in memory care. And I guess you know better than the hospital, which is supplying the sitters to stop her ripping out her IV and falling. Or I guess they should just let her keep ripping it out and falling to teach her a lesson? Until she "acclimates?"
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I know you have been here for a while but like Alva I can't remember the details.

You mention "this disease" so Mom must suffer from Dementia. Now I am basing this on Mom being in her 80s and my experience with Rehab and My Mom. She too had a UTI and was in the hospital long enough for Rehab. Rehab is not a have to thing but that was not how it was presented to me. The discharge person called and "told" me Mom was being sent to Rehab and where would I like her sent. From the 3 close to me I picked the one with the better reputation. At this point Mom was in her last stages of Dementia. Rehab was horrible. She had no idea where she was. Her roommate told me she cried all night. The care meeting was a disaster, the doctor at the facility felt Mom did not need her thyroid meds. PT did not go well because she couldn't remember the exercises or take instruction. They told me she would not walk again without assistance even with a walker. I had told the finance dept going in, they better do what they need to do within the 20 days because there is no money. I had budgeted Mom down to the penny to keep her in the AL as long as possible. She was there 18 days. I swore I would never put her in Rehab again. I would have sent her back to the AL and had PT come in there. By the way, within 24 hrs after Mom returned to the AL, she was walking all over the facility with her walker unassisted.

Where I live Rehab and LTC are in the same building. Since Medicare pays 100% for 20 days, its money in their pockets. I so hope neither I or my husband ever need Rehab. Neither of us would do well in that environment.

You may want to get Mom on a regiment to help keep her from getting UTIs. My Mom was put on cranberry tablets and a probiotic. From that point to her passing (1 year) she never had another UTI. Alva swears by D-Mannose.
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cignal Nov 2022
THanks joanna, your post bolsters my feeling that the rehab is not necessary.
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Have the discharge planner look for Rehab that is in a locked facility that has Memory Care residents.
I know there are places like that it was a facility like that that my Husband was in for rehab after he broke his hip.
I actually though the PT and OT were great as they have experience with Memory Care residents more than another facility might.
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lealonnie1 Nov 2022
I never knew there was such a place Grandma. When mom was alive, I had a choice of 2 SNFs for rehab and neither one of them was a locked facility with Memory Care residents.
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Oh brother, I would NOT be sending mom off to rehab b/c a person has to be cognizant enough to participate IN rehab PT & OT otherwise it's a waste of time. And in your mom's case, you already know she's non-compliant due to dementia, so rehab will only wind up to be a nightmare for YOU mostly, to figure out how to hire sitters for A LOT of $$$ or sit with her 24/7 yourself which sounds like too much for any mortal person to bear, frankly.

Dementia is horrible in every way it's possible to BE horrible, for everyone involved. I can tell you stories that would turn your hair gray about what I went through with my mother who lived in Memory Care for just under 3 years. As much as is done FOR them in MC, we 'children' still have A TON to do for them! Anyone saying anything differently has never been there/done that. Period.

When mom started getting VERY bad in the last year of her life, I prayed daily for God to take her Home with Him so all of our misery would end; mostly hers but mine too. I've never witnessed anything so awful as my mother's dementia and ranting and raving about the dead family members, and asking where they were, and insisting 'mama was hiding' in the MC somewhere, or that I was keeping her from mom. Sigh. Her agitation and anxiety was through the roof to the point where her meds had to be increased a lot for her just to function. Hospice was a huge blessing for both of us when they finally agreed to accept her.

I'm sorry you're going through this. I'd say a resounding NO to rehab if it were me, and get mom back to the MC when she's released. Let them deal with her and if worse comes to worse, you can always figure out a 'sitter' situation THERE instead of in rehab (only in the worst case scenario of course).

Sending you a hug and a prayer that everything works out well here.
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cignal Nov 2022
thanks lealonnie, especially for the "Anyone saying anything differently has never been there/done that. Period."
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The IV can be covered up so she can't see it or access it easily.

Is it for antibiotics or fluids?
If antis & it gets pulled out, staff will need to redo. This is more work for them - so sometimes they can find creative solutions eg extra supervision by having staff write their notes within sight/nearby.

If IV is for fluids, maybe a hard taskmaster can make her drink instead?

Going to rehab after IV has finished to recover strength may be the preferred pathway. But.

Pros & Cons.

My LO skipped rehab after similar UTI blood infection. She DID need the physio but this was outweighed by needing familiar surrounds for cognitive & emotional reasons MORE. She was unraveling into panic... meds not enough. Physio came to her instead - it worked out, just.

Weak + confused = falls.

This will be the challenge in rehab or memory care.

Which will have more supervision?
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Wow, this must be very hard!! I agree with no rehab but get her back to her MC as soon as she can be discharged from the hospital. I would ask about increasing or changing her meds if they are not helping her anxiety.

Dementia sucks!!!!
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If the facility she is in rehab at has physical therapy she can get it there if they are approved. Anywhere she goes though she will need to be able to participate in at least three hours of therapy a day if a Medicare advantage plan is being used for the stay. It's not three consecutive hours though
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My mother also had severe dementia, and she didn't understand what was happening to her in the hospital, and didn't like it. It was like torture for her. Her doctor and I decided that it was time for her to go on hospice-type care with no hospitalization. My mother did much better "on her own" and was much more content. There comes a time when you may decide that the cure is worse than the injury.
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cignal: Your mother may, in all likelihood, not cooperate with rehabilitation as she is in memory care for a reason.
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Just an update that mom is in rehab and we lucked out with a roommate who seems to like watching over mom and telling her not to get up when she tries. Which she does several times a day. The roommate does not have dementia and in any other context I'd say she is annoyingly bossy but it works well with an elder who acts like an incorrigible toddler! She even told me before I left to pull the curtain back all the way so she can see if mom tries to get up. So no sitter or drugs needed. We're not out of the woods but for the moment we can take a breath.
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BarbBrooklyn Nov 2022
I'm glad things are looking better!
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I still remember when my mother was in the hospital in 1988 with cancer surgery (long before she was old or had dementia), and the poor, demented woman in the bed next to her would constantly get up, spread her legs, and yank on her catheter with all her might. We'd have to call the nurse, I'd run over and take her hands in mine, and try to distract her until the nurses came.

That was foremost in my mind 30 years later when I put my mother on hospice after a two-week hospital/rehab stay during which she was terrified and confused. When she was released from rehab, I said we were done with hospitals, and from then on she was to be treated in place for anything that ailed her.

She picked up Covid in the rehab hospital, testing positive after she was released, she developed terrible gout from drinking nothing but sugar-laden Boost for eight months, and she had terrible wounds on her legs that needed treating. All were handled in-house at her nursing home by the staff and hospice nurse, and she lived another seven months terror-free.

I recommend taking that route.
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So hard, my husband is 95 yrs old. He can't see well he has cataracts, can't hear. I have tried so many games too entertain him..He is not interested,
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@Beekee

If the round-the-clock sitters you've hired for your mother who already lives in a memory care facility cost more than the memory care, why not take her out of it? You would certainly be saving a fortune by not paying for memory care. When her sitters are no longer necessary put her back in memory care.
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