My mom suffered an ischemic stroke at the beginning of January after having heart bypass surgery.

She was fortunate enough to be able to go to acute rehab and handled it well (psychologically) for 3 weeks. They allowed 1 visitor per day and I was there almost every day for that period. Unfortunately, she did not make much progress.

She currently can drink normal liquids and eat most types of food. She can speak clearly. However, she has many serious limitations. Her left leg and arm are completely useless and she is bedridden. Transfers, posture changing, showers, etc. are all pretty much max assist or completely dependent. She suffers from extreme fatigue. She is incontinent and had a catheter, but I think she's just using diapers now. She lost the ability to tell time and will call people at 3 a.m. thinking it is dinner time. She has severe left side neglect, and will be unable to find objects right in front of her, even though she can read text with effort. She has some cognitive impairment, mostly related to problem solving/executive function and short term memory. Unrelated to the stroke, she has almost daily moderate medical issues: fluid buildup around the lungs, UTI, saline IV for fluids, about 20 different types of medications. She also has severe anxiety brought on by the stroke (no source to point to and it's been consistent since mid January).

As a family, we agreed that the next best step was to put her in a Skilled Nursing Facility. She was completely on board up until the day she was transferred. Two immediate (nuclear) family members are physicians and said we had very little other choice. After 6 hours in the SNF, she called me at close to midnight BEGGING me to come home. I've never heard her in distress like this and as the child (35) in town, I feel responsible for taking care of her. I'm freaking out a little bit as a result. She continued to plead with me all of yesterday and told the staff "she was leaving." The SNF does not allow any visitation due to COVID which makes this even more complicated.

Very recently (past couple of days) she started to develop hallucinations, including thinking she was 1000 miles away near her childhood home and could hear the ocean, and saying that the social worker told her she was going to return to the acute rehab hospital (which she most certainly didn't). She was up until this week a sweet, docile, kind woman, and has instantly become terror-stricken, agitated, and combative. She's horribly confused and is insisting to me that she is trapped in this facility even though I say that's not the case, and I want her to calm down so she can propose a solution. Most of her complaints are inattentiveness in the facility and the fact that she doesn't like the environment (not to mention the panic she's in just from the anxiety).

I'm an able-bodied man in the same city as her. Our family has money to cover any option, and I have no absolute responsibilities of my own (I was job hunting when this happened, done with school, no kids, etc.). I desperately want to do anything I can to help her but we decided to put her in the SNF for a chance at rehab, safety from COVID (family says bringing home help in might be risky), and because of how much attention she needs for essentially every function.

I know this is a lot of text but I would appreciate any perspectives you have based on what I've written here. I feel like the stress is going to kill my mom, or she's going to be a sedated zombie by the time the week is through. This decision seems like I'm condemning my mom to a terrible fate, and I don't want her life to be like this. I'm just trying to take care of her with the recommendations of my family and what I consider common sense. Please let me know if you've seen a similar situation, how it can be navigated, or if you think she really should be brought home.

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Hi everyone - I just wanted to post an update. I'm positively overwhelmed with the support, empathy, and insight that you have all provided -- I didn't expect to find such a great resource and I am very grateful that you all took the time to respond. It's helped me understand the resources available, general approaches to dealing with this kind of problem, and it has helped keep the stress from being overwhelming.

Mom is doing a bit better, fortunately. The hallucinations seem to be absent and her generalized anxiety/panic attacks have greatly subsided. I'm not sure exactly what the cause is; I can imagine it being either treating the infection, adjusting to her new environment, or may simply be the subsidence of a cyclical issue, but there is some relative calm. The remainder of her psychological concerns have been reduced, at least for now, to general confusion (this morning she kept punching buttons on the TV remote thinking it would summon a nurse, apparently forgetting about the dedicated call button remote in the process). She even brought up the idea of looking at facilities to settle in for the longer term, mentioning in the process that she had a former neighbor who lived in one and she (my mom) liked it when she visited.

The family and I are all in agreement that the SNF is the best option for her. The posts here have made me realize that pulling her out of the facility in an act of desperate compassion would likely do much more harm than good, both to my mom and myself. It has been difficult to process my thoughts under duress which is why I reached out for some thoughts, and I feel much better equipped with information and clarity.

Thank you, sincerely, for your generosity here.
Helpful Answer (20)

HI there! I am an RN, caring at home for my disabled family member in my home.

First, I would like for you to explore the idea that your mom may have a uti. Frequently these cause confusion, agitation, and dementia symptoms. A test to diagnose or rule out is simple, and treatment is easy. Yet without treatment, sepsis is a possibility.

Second, I am a caregiver of a disabled family member who, through a series of unfortunate events, was taken out of a facility and then basically abandoned by his adult daughter, who proceeded to spend almost all of his disability funds on herself. (She is currently charged, and out of jail on bond pending trial.) As a result, we took him into my home, at the request of APS. Due to covid, the legal process of obtaining guardianship and conservatorship was long and drawn out. To summarize my living environment I will simply say that you should NOT bring mom home in her current state. It will cause you mental and physical hardship, and you will not be able to leave your home. You are not in a relationship now, but if you meet someone, want a career, or decide that you want children through adoption, you will not be able to. We hired a full time caregiver, but she does not stay on nights or weekends. Reliable help is almost impossible to find, no matter how much you are willing to spend. The behaviors of my family member who has brain damage and several medical issues, along with the frequent medications and toieting issues, and the verbal outbursts (he called my son with high functioning autism a "retard" at the dinner table last night) are horrific. We are currently seeking placement. I do not know if my marriage and my family is going to survive the fallout from this if it goes on much longer, we are told the wait for a bed is 2 months to 2 years. Our family member has been with us for a year.

He is not the same person he was before his brain damage. He is in his early 50's.
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Chickie1 Feb 2021
Praying for you and your loved one.
You expressed yourself well. This may be the time for at least a couple of harmless lies.
First, ask the staff to hide her phone after 8 pm until morning.
second, tell her the doctor says she has to stay another “few” weeks before he can decide if it will be ok for her to go home.
I used the second suggestion with my wife years ago and soon enough she would nod her head yes when I asked her if she liked her room and the staff. (She was in the same “condition” as your mom but she could not speak at all.)

Also I routinely asked her a couple of times per month if she would like to take a trip to Florida/California/ Grand Canyon/etc when she “gets better.”
Such strategies served us well for the ten years she was in the skilled nursing facility.

Grace + Peace,
Old Bob
Helpful Answer (10)

Adm, ((((hugs))))). Deep breaths, too.

When you say mom is in a SNF, is she admitted there as a rehab patient or for permanent placement?

Has she been seen by a geriatric psychiatrist?

My mom had an ischemic stroke in 2013. Went to acute rehab, did great with PT. Speech therapy, the works. Transferred her to a highly rated subacute rehab with an adjacent Assisted Living facility (because we were thinking ahead). We thought ourselves so clever.

I was sitting with mom one afternoon while the nurse gave her her pills. When mom took the last one, she looked me and said, "you see, I have to manage my own meds here". I said "what?". She pointed to her water pitcher and gave me a "significant" look. The next day, she told my brother that the aides were having sex in her bathroom. The next night, they were carting dead bodies out in the middle of the night.

We asked for a psych consult (at the recommendation of the nurses) and were told mom had developed vascular dementia as a result of the stroke. Her anxiety had previously been managed by a Geri Psych in her Independent Living facility with a very low dose of klonapin, but in the subacute rehab, the doc added an antidepressant. Later, another one was added. A cocktail of Lexapro, Remeron and klonopin kept mom calm, happy and not at all sedated.

Sometimes antipsychotics are used in this sort of situation. Psychopharmacology is an art, not a science, so be prepared for some trial and error.

Get her seen by a psychiatrist as soon as possible. And know that UTIs are also known to cause psychiatric symptoms in elders.

And to answer your last question, bringing her home is the least good option. It sounds like she is, at this time, a 2 person assist, which is untenable. What led to my mom's placement in the IL was her unremitting anxiety, which even 24/7 aides didn't help. Only meds helped.
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Adm101 Feb 2021
Thank you for this advice, and for sharing your own experience. My mom is in a subacute rehab SNF now after being in acute rehab. I hope I am using the terms right: to clarify, I mean that she *was* receiving 3 hrs/day of therapy in what I'm calling the "acute rehab" facility, and this new SNF is providing 1-1.5 hours per day. Both facilities provide 24/7 medical care, although the acute rehab facility had more or less daily supervision from physicians. The new SNF has asked if we would be considering permanent placement for the future, but we have not made any decisions about that yet, as I think we have ~20 days of Medicare-covered treatment to consider longer term options.

When she was in acute rehab, she saw a clinical psychologist several times who, along with the physicians, managed to keep her calm and well enough to participate in the therapy sessions. I am going to make managing her mental issues a top priority and try to get a psychiatrist to see her ASAP - since this all happened suddenly and near a weekend, it's been slow to make appointments and get her any substantial help. It's understandable but having a loved one losing their mind (perhaps both figuratively and literally) is a constant stressor.

Your story about how your mom was perceiving the care and imagining things is similar to what my mom is doing right now. I just talked to her and she said "they're refusing to let me use the bathroom" - but the aide happened to be in the room, and I heard her chime in over the phone, "she's on a bedpan right now." I have an initial reluctance to trust strangers over my own mother, but that's quickly changing.

After the diagnosis of vascular dementia (which I suspect my mom had already started due to years of mismanaged diabetes), what happened to your mom after subacute rehab? I don't mean to pry, but I am new to all this and your perspective is helpful and comforting that my situation isn't unique. My understanding is that dementia is not a condition that improves, but is only managed, so I am curious to know what sort of living situation your mom required afterwards. Thank you again.
Adm, I'm so glad you understand what we're all saying!

So, after subacute rehab, we were hoping that mom could go to a nice AL (the one at the rehab would not take her with a dx of dementia). We found a fabulous one near where my brother lives with several levels of care available--regular AL, basic memory care and advanced memory care.

The AL assessed mom and though she might be a better for basic MC but had no bed available. So we moved her into the AL section with some extra oversight by staff. Within 15 minutes of us all leaving, mom fell and just lay on the floor until someone came by to check (they had said they would check every 10 minutes and they did; we got the call as we were driving away. (Mom could no longer process the idea of pushing her wrist call button to summon help).

We moved her immediately to the available bed in "Advanced" memory care. Mom seemed dazed and very confused from the moves. She declined before our eyes.

We hired a 24/7 aide to keep her company, feed her, make sure she was hydrated and getting where she needed to go. On the 3rd or 4 th night (this whole time has a nightmarish quality in my memory), mom got up to use the restroom; there were 2 aides in the room--her roomate also had a 24/7 aide-- and mom fell before either of them could get to her (spacious rooms have their drawbacks). Mom SEEMED okay after this fall but she was taken to the ER and everything was xrayed (hips, pelvis) but mom stopped wanting to get out of bed and was very resistant to PT. The very alert PT noticed that she wasnt bearing weight on one leg (she looked kind of like a racehorse that has gone lame) and he insisted on a new xray. Mom had a broken hip.

Hip surgery repair was done, thankfully under a spinal anethetic, because general anethesia is VERY hard on the elder brain, something to keep in mind if your mother's surgery was recent. One month's recovery for every hour under is the rule of thumb.

Anyway, it was clear after the surgery that mom needed a much higher level of care than AL or MC. We had a GREAT discharge planner at the hospital who pointed out to me that often it's not the fall that causes the break, it is the break that causes the fall. I had told her that my mom fell with 2 aides in the room; she replied that her mom had fallen with 3 RNs in the room, and one if them was her, the daughter.

We got great advice about placing mom in a NH that would accept her as a Medicare rehab patient, but that would allow her to stay (after a certain number of years as a private pay patient) if she needed to go on Medicaid.

I recall thinking as they wheeled mom into the NH that she would probably decline and die quickly... she lived for 4 1/2 happy years. Thanks to good psychiatry, she was on the above mentioned cocktail of meds that kept her happy, alert and calm. She had CHF which was treated conservatively, had a pacemaker put in (we left that decision up to her) and eventually we asked for palliative care--no more hospital trips as they terrified her and left here more depleted and never got back to her baseline. She passed away after 3 days on hospice after a fall at the age of 94.

I hope this is helpful. Please feel free to ask any questions.
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Adm101 Feb 2021
This certainly does help and I appreciate you taking the time to provide some more details on what is a very difficult series of events. Hearing about how other people have navigated these challenges and what their advice is helps keep me focused on what's important, and I feel much less overwhelmed than trying to figure it all out by Google or trial & error.

I had not even considered the effects and burden of the surgery itself, which may be compounding everything else that's going on. It may make us cautious in the future about pursuing somewhat optional interventions (the doctors had originally planned to have her come back for additional stents, for example).

Despite all of her issues, it is inspiring to hear that your mom beat the odds and managed to survive for a few more years. No matter how exhausted or stressed I am, I cherish every minute I get to spend/communicate with my mom because I know that she's in a very precarious position.
My father suffered an exact same stroke as your mother. Left sided totally parylysis. Covid has been unyielding! I am a seasoned nurse who could not protect my father from the acute and subacute rehabs, and the "unskilled, understaffed SNFs" he endured while trying to recover. He lost 100lbs, his will to live was gone , he was depressed, isolated, anxious and had reorientation issues similar to your mother. Ie phone calls in the middle of night, it was harrowing to be on the other end of the phone wandering where the staff were and why no one cared. His body became further injuried by the inattentive staff no range of motion was performed therefore leading to stiff muscle contractures. You are greatly fortunate that you have the finances to pay for homecare support. I took my father out of the facilitys prayed that home would be better. I have a live in caregiver via an agency that is marginal at best but still risk it because my dad improved immediately.
If you have family help and MDs to advise you please check medications first! My father was on overlapping meds that hindered his ability to rehab and exercise well. I got him a antidepressant medication which took affect and made his depression much better and brought back his motivation and incentive. I also got him on a wake sleep program that involved meds for insomnia and he can sleep 8hrs without issues. He increased fluids which decreased UTIs.
My plans were to have him in a adult day care for 8hrs, then homecare at night. However daycares are still closed in PA so we are waiting it out. My father gained 50lbs and is a healthy weight now. His skin and muscle tone improved greatly , his mental status and attitude improved, and remarkably he regained a small amount of movement in his left leg. There is alot left to do, he hasn't been able to seek medical follow up because of covid and transportation issues but its better than before.
Please try whatever it takes to bring your mother home and at least give it a shot. Get with a social worker to advise you on your insurance options, veterans benefits, local community resources, and homecare choices. Find a support group (which I know sounds funny because your thinking when the flip do I have time to attend a support group)? But remember good resources are key! Bad ones waste time and energy...
It is all consuming, mentally and physically but if you dont try your mom could suffer further.
If you can't handle it at least you know you tired your best! Thanks for listening and please reach out if you need anything.
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Lymie61 Feb 2021
I have to point out that you are “a seasoned nurse” who is still using full time help to care for your dad and knows how to provide the personal stroke rehab treatment. You are still recognizing the difficulty and toll, I imagine it could be far greater on a 35 year old untrained son caring for mom and without the training and experience you have results might not be similar. I’m not saying he shouldn’t bring her home if that’s what he really thinks is best just that you aren’t comparing apples to apples even if your loved ones afflictions are so similar.
Adm, my mother-in-law (MIL) went to emergency room with a UTI. She is late stage parkinsons with a Supra pubic catheter. She tried to pull it out, telling us she had been shot with an arrow while camping. Change from her SNF to ER caused delirium. We got her treated and back to her facility. Now? She calls us at random times, no one ever comes when she pushes button, they don’t feed her...and she wants to come home. No one wants to leave home and live in medical facility. Please tell her medical professionals that she needs to be evaluated for anxiety and may need antibiotics. My husband said it helped when he recognized that the home she wants to return to is one where she is healthy and no medical issues. He can’t move the clock backward and she cannot afford hundreds of thousands of $$ for 2 persons 24/7 care. You can’t be a nursing home, but you can be her advocate for care. She would want you to have a life separate from her needs, and you won’t as her full time caregiver.
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Adm101 Feb 2021
Thank you for this response. "You can't be a nursing home" is pretty much why we made the decision in the first place.

She is on antibiotics for the UTI. If she were at home when this developed (along with the myriad of other problems), I'd be Hoyer lifting her to the hospital daily. She's also on two antidepressants and has seen a clinical psychologist in the rehab facility who helped manage her anxiety on a day by day basis, but she's only been in the SNF for two days (and it's the weekend) so I think the only thing they may do is try to triage with Xanax. I will talk to the social worker and the nurses and see if we can get a psychiatric consult ASAP.
That you already have two physicians in the family is a comfort to me, because I do believe that they would caution you against bringing your mother to live with you, or supposing that 24/7 care is affordable over a long period of time, to live in her own home with caregivers. I think that from my own experience recovery from stroke occurs within the first two weeks, or--sadly--seldom at all without tremendous determination and hard work as well as full cognition. That is my personal experience of it. Many physicians are now so highly specialized that even your family members may hesitate to tell you this, but if they consult with friends in neuro/psyc, I think many would agree with me.
The UTI will be addressed; it will be of interest to see if there is any improvement after that; there may be in terms of agitation. I hope there will be.
That you feel so dreadful hearing what you are hearing is indeed more painful than any of us who have not heard this desperation can even begin to imagine. But the truth is that not everything can be fixed, and your Mom may not be appreciably better. There may also be continued heart and brain incidents.
I know you don't want to hear this, but placement is the only--and the very saddest--option I can imagine right now, and hospice when it is possible.
I am so sorry this happened to your Mom. 68 today is still young enough to have so much of life left, but when this occurs all choices are really removed from us.
You say that finances are in place to let there be options, and there is nothing to say that you cannot try options, but my suspicion is that it will only prolong what may be inevitable. I am so sorry this happened to your Mom, to your entire family.
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Adm101 Feb 2021
Thank you for this advice and the sympathy. I agree that while the decision is less than desirable, it may be the only sensible option on the table for us. My dad echoed the same sentiment that most stroke recovery tends to happen upfront but that we should not give up hope (or let mom give up hope). It's certainly one of these "hope for the best, prepare for the worst" scenarios.

She's had multiple traumas in a short time -- stroke and loss of abilities, hospitalization, a rehab hospitalization, and now a skilled nursing facility. It's a lot to handle for a younger, healthy person, let alone an older person.

Consult with the doctors at the SNF to see what they recommend. She'll get settled in eventually, but she probably won't be the same. Every trauma is a little harder to recover from, so expect the bounce back to be a little less each time.
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Adm101 Feb 2021
These setbacks do seem to build on each other. I will take a look at this resource and learn a bit more about delirium and how to manage it. Thank you for your perspective on this.
Adm101, I am so sorry that your mom is going through all of this so young.

Is it possible that she is having mini strokes and that is why she is getting worse?

When you have the conditions that your mom has it is very common for sudden and sharp declines. So prepare yourself for a rollercoaster ride.

My grandmother had a series of strokes that took her from fine on Friday to full blown dementia on Monday and she never recovered.

Strokes cause brain damage, unmanaged diabetes is a common in dementia patients and top all of that off with heart conditions. Which it is very common for mental health issues to come up after a cardiac incident. We were warned that we would see this as time went by with my dad, it could be part of what your mom is experiencing.

Be her advocate and loving son, please do not bring her home and try to care for her. She will not get the best care possible, because of everything going on with her and you will feel wrecked in no time by the constant worry and struggle of trying to care for her.

You are fortunate that you can afford options, perhaps hiring a companion that will be allowed in the facility as a caregiver to give your mom some reassurance that she is being taken care of and that she will be okay.

Great big warm hug! This is so very difficult. My dad was only 69 when his decline started and it was heart breaking to see such a young person lose so much.
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Adm101 Feb 2021
I do believe it is possible she may be having mini strokes, but to some extent it would be very difficult to tell unless she developed new and obvious symptoms. She's in such an altered state right now that I think many symptoms might be confused with drugs, so figuring out what the exact cause is could be challenging, short of repeated trips to the neurologist.

I am sorry to hear that this happened to your dad, too. It's absolutely tragic, but if nothing else it has made me reflect on how much I cherished my parents in good health, and how fortunate I am not to have suffered a medical setback. Thank you for this advice - I'm sending a big (albeit virtual) hug right back at you!
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