Hospital stay - now what?

kblau

My mom (72) has been in MC since August. Minimum assistance w ADLs. Took her to ER on Saturday bc Flu and low BP. They admitted her to monitor her heart rate, oxygen, dehydration and kidney function. Pretty much was severely dehydrated which caused the acute kidney injury and low blood pressure. She’s stable but wheezing. Since being there she’s become extremely confused. They want to discharge her tomorrow but I’m afraid she’s just going to wind up with pneumonia, dehydrated again etc. I’m now afraid if she falls bc of the low BP (if dehydrated) what will happen. And also I’m now concerned she can’t wipe her own ass properly bc since I’ve been staying around the clock, I cannot believe this. Sorry, I don’t know how else to put it. I’m pissed at her MC for not being on top of any of this. I don’t know what to do! What options do I have?!

I don’t know anything about rehab facilities. If she might need now a nursing home. PT says she can use a walker now temporarily and I know damn well my mom isn’t going to remember to do that. Do I get home health on top of memory care? Will being in rehab confuse her and cause the dementia to worsen. I want my mom back. I don’t know how to go about helping her get back to her baseline normal. Every decision is so difficult to make. So many what ifs with this disease.

harshedbuzz

@kblau

I am so sorry you are dealing with a hospitalization and rapid downturn in your mom. This is hard stuff.

I can't speak to the quality of the MCF you chose for your mom, but I think it's important to remind yourself that they offer custodial, rather than medical, care. The level of surveillance is akin to what a person would have living with family at home.

Elderly folks can get sick fast. Dehydration is common- even in older people w/o dementia. Sometimes they don't recognize thirst while others opt to limit liquids to avoid waking at night, worsening stress/urge incontinence or arthritic shuffles to the toilet. And dehydration often sets off a cascade of other issues that need to be addressed which can get complicated.

And then there's the hospital delirium. Older people, even those without dementia, can go off the rails with a hospitalization. The unfamiliar setting and routine, the disrupted sleep, and their symptoms (both low O2, low BP and dehydration can impair cognition below a person's baseline) can leave patients confused, combative and not themselves. This usually improves once a person returns to their normal routine and is sleeping in their own bed. TL;DR if you have no evidence that she wasn't wiping her own ass (odors, skin breakdown, dirty panties) in MC, it's because she retained that ADL until she got sick. Odds are good that she may regain the skill once in her familiar surroundings. And if she can't, the caregivers will step in.

Many people here suggest having family stay with their LO during any hospitalization, but I realize that isn't always possible or practical. Sometimes it not what's best for the patient. The summer before my friend's husband died, he was hospitalized for almost 2 months. He was a brilliant man who was a recently retired judge in a large city. And yet, he went bonkers on admission to the hospital accusing his wife— who he didn't recognize of stealing drugs from the hospital. He called the detective unit and tried to have her arrested. Fortunately, she was out of their jurisdiction.

I've been through 4 hospitalizations with my mom who does not have dementia in the past year. Two for UTIs and 2 for pneumonia/COPD. My mom lives "independently" in her own home. We talk daily. I see her 4-5 days a week and at least 2 of those days for several hours. And yet, when she's "coming down" with whatever illness will next land us in the ER, it can be really subtle. Ironically, I am more in tuned to her earliest symptoms than she is so I don't get a warning from her. And it can be confusing because symptoms at onset are not consistent. The first UTI presented with fever, high BP, confusion and agitation while the second time her BP was dangerously low, no fever and she was barely responsive. While I would not let the MCF off the hook if you were reporting symptoms and they ignored your concerns, but it could be she wasn't obviously mildly symptomatic before she was very sick. Some of the medications mom get in the hospital (40mg IV prednisone I am looking at you) make my mom off the wall; knowing this helps me keep her (and me) calm while she deals with the side effects.

I can appreciate feeling the weight of decisions about next steps. Discharge to the familiarity of her room may restore a lot of what she lost during her hospitalization. If you're concerned about falls until her BP is back to her normal, you could add a private aide or sitter for when you're not there.

Medicare might pay for rehab if she has had a qualifying 3-night hospitalization, but she would need to qualify for and be able to participate in doing the therapy a couple hours a day. Rehabs are typically a part of a SNF.

Making the decision between SNF and MCF isn't always easy. I've had dad in both rehab and a MCF and my aunt with dementia split her time in a facility between the 2 places. IME, the quality of life seems a bit better in MC. A good one has dementia-informed programming and staff who were experienced and had chosen to work with people who have dementia. Most MCFs have a daily program of failure-free activities. A SNF will have more highly trained staff, but IME, dad and auntie didn't really get enough facetime with them to make a difference— they oversaw meds, ran IVs, managed diabetes and did wound care for those who needed those services. Staff in the SNFs were not as highly trained in terms of managing dementia behaviors. A SNF almost always has semi-private rooms with little space for one's personal things. There's very little social programming in SNFs— the folks are either too ill to participate or busy working on OT, PT, and such. The risk for falls remains in a SNF. My other aunt had a serious fall in a AL, was transferred to a SNF to recuperate and had several falls before the facility insisted family provide 24/7 sitters.

I often think my own mom would be "safer" in an AL at this point. She's still able to make her own decisions. That said, I favor quality of life in making decisions where she wouldn't be putting anyone else at risk.

HB

terei

The only thing I can suggest is that she be placed back at MC with a wheelchair + using adult diapers if she already isn’t. I would also contact hospice to have her evaluated at the hospital…they may have suggestions or recommendations for you as to proper placement considering her condition

cdgbdr

What is the hospital recommending for the next level of care? She may need short term SNF or rehab but she'd need to qualify for a rehab unit (able to participate 3 hours per day, medical complexity). She should be able to receive some skilled home health in the MC facility. Illness and changes really disrupt things for PWD. What are you most comfortable with? Go with that.

psg712

If she is medically stable, back to familiar MC surroundings with home health PT/OT would give her the best chance of regaining prior function. Just my opinion. The MC may have to evaluate first to accept her back. Different facilities have different criteria for the level of care they will accept. But any MC should be able to handle an increased need for assistance with personal hygiene.

mabelgirl

it’s a fact each hospitalization will cause a decline in the elderly and more so to a PWD. We have struggled with this very situation. We, being my siblings and I. We have discussed what is benefit of making the body function but the brain deteriorates more? Is this what our mom considered to be a good life? Prayers for compassion based decision.

kblau

https://alzconnected.org/discussion/comment/233871#Comment_233871

thank you for your response. It was very comforting to hear your experience and thoughts. I appreciate it greatly. 🙏

kblau

Sincerely thank you to all of your comments. It’s been a rough week. I was very fortunate to have very caring doctors help me with the decision making process to keep her overnight until the last night, the 15th.

Her lung scan showed a change and we decided to keep monitoring, start treatment with antibiotics and continued Tamiflu. Her O2 was consistently 90 + without need for oxygen. So they discharged her with no restrictions.

Case manager said she didn’t qualify, despite the 3 night stay, for SNF/Rehab but will get PT at the MC unit. She is able to walk without the walker and they don’t feel she needs it. PT will work on strengthening overall. No meal restrictions - swallow eval normal. So all in all she’s in relatively good shape (if that’s a thing).

It’s only been 24 hours that she’s been back in her own bed, I’m just sad to see her attention span so short, an increase in her agitation and memory loss (surprised I’m married - been so since 2019 and our family wedding pic is next to her bed). The positives are she keeps asking about my 4 year old and that makes her smile. And she knows who I am. And I took her for a walk down the MC unit hall and she seemed good. She knew where her room was, she know how to use the key, etc.

maybe the medication (steroids although I think she’s off them now) caused the agitation and that will resolve soon. Maybe she will get better? Cognitively? Speech? Etc. after she fully heals and is back in her routine. I know I’m wishful thinking but I am feeling like I lost another piece of her. Like how could I have been heartbroken last week with her status when look at her now?! She’s slipping away.

I think this was the first time I got caught off guard by the grief. I’ve been in action mode for so long. I finally hit a wall.

Thank you. I am so glad I have support here.