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Hello and good evening. My mother and I have been the primary caregivers of my grandmother since February 2020. It was at that time that we found out about her extensive health problems that includes dementia and high blood pressure. While we were trying our best to get her the healthcare she needs, sadly, she had a stroke just this past summer 2021. It was at that time that her hospital recovery started, and then eventually sub-acute rehab.


After her hospital discharge in August, that's when things went downhill. She was recovering amazingly at the first facility, but unfortunately had to be transferred because of her anger and a medication mistake that could not be overlooked. Second place, she was fine initially, doing her PT, speech and OT, so we figured she could go to a memory care.


Fast forward to now, my grandmother has deteriorated and has not been the priority. Many staff changes have occurred and we are not alerted about this until well after it happens. Every time we visit her, she looks fine, but she isn't walking or talking and it is incredibly difficult to fine any staff members to tell us ANYTHING. We ask about her condition during her care meetings and they say she's getting better, but we know otherwise.


Just yesterday, we get a call from a hospice care stating that they wanted to discuss a REFERRAL from the facility for my grandmother, something that was never mentioned whatsoever. Of course both my mom and I are distraught and beyond disgusted that this place did not let us know anything. Even the hospice worker was audibly upset that we weren't alerted.


I have a couple questions that I'm hoping someone can help me answer with your own experience:


1. For those of you with loved ones that have had a stroke: is it possible to deteriorate rapidly (go from walking, talking, etc. to virtually bedridden) and recover again?
2. Would there be any reasons other than neglience that a rehab center wouldn't discuss a hospice referral?
3. Should we be contacting a lawyer/legal aid to take legal action?


I am horribly distraught yet I'm trying to help my grandmother as much as I possibly can. Please if anyone can help, I would appreciate it so much.

There's absolutely nothing to get lawyered up about, so just forget about that.

Now, my first question is why have you kept Grandma there if her care is so terrible, communication is non-existent, and you feel she's not a priority? Memory care is not for stroke rehab, so I'm confused why you put her there if she was still rehabbing.

I don't have a loved one who's had a stroke, but my daughter-in-law is a speech therapist for stroke patients, and she says that there's little if any significant improvement after about six months past a stroke. The fact that your grandmother is deteriorating may have nothing to do with her stroke and is just nature taking its course. She's been through a lot.

A referral for hospice is not a requirement to sign up for it, but I'd recommend you do it. She's not required to die within a certain time frame, and with hospice she'll get another set of eyes on her that's dedicated specifically to her care. Her doctor will be the hospice doctor, not the nursing home doctor who probably referred her, and a hospice nurse (who'll become your grandma's best advocate and your source of information) will be the eyes on her. Trust me, the hospice nurse is the one you want as your friend, and the hospice organization has a lot of support services for the family, too, so take advantage of them.

Yes, it's upsetting for them to have neglected to talk about the referral, but if you get a good hospice company (and you can choose any one you want), it'll probably be the best thing for all of you.

Educate yourself on what hospice is and isn't. No, they don't withhold medications or food and water. They focus on quality of life over quantity, so they don't keep doing unnecessary therapies that aren't going to cure anything and may cause more misery instead. They want their patients to be in the least amount of discomfort possible. I used hospice for both my parents, and they were a godsend.
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Reply to MJ1929
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So your grandmother is now resident in memory care, yes?

Since she was admitted to memory care, how often have you visited her? You say "fast forward to now" but evidently a lot has gone on since the autumn. What do her notes say?

Your disgust and anger are misplaced. Your grandmother has been *referred* to a hospice service, and the discussion about whether or not she should be *admitted* is taking place now. That's why the lady from hospice rang your mother. What is it that you feel ought to have been done that hasn't been done? - permission sought to make the referral? I agree that such a conversation would have been an ordinary courtesy, but would you have disagreed?

You mention care meetings, so presumably you do have a named person in charge to contact. If you're dissatisfied with what has taken place, ring that person and ask for an explanation.

It continues to depress me when people ask "who do I sue" before they've taken the trouble to ask "what happened" but I suppose I really should be getting used to it by now.
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Reply to Countrymouse
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Would you be asking these questions if, say, the facility had made a referral to a different neurologist who called you out of the blue, rather than hospice, without consulting you first?

I think the term 'hospice" gives many people an immediate, visceral reaction: that is to say, "the medicos are telling me my loved one is about to die". For people who have had either bad experiences with hospice in the past, or no experiences at all, that reaction seems to be much greater.

It's scary, sad, upsetting, heartbreaking, to contemplate the loss of someone we hold dear in our hearts. But I think a little bit of your anger here is misplaced fear and grief. Should the communication have been better? You betcha. But since, as you say, you are trying to help your grandmother as much as you possibly can, then try and put aside this anger over the referral and find out what services hospice can offer grandma.

Good luck and best wishes!
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Reply to notgoodenough
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When my mom fell after a year of weight loss. I received that same question about referral which I welcomed to speak to after being examined. Her staff see something that you may still be blind to. This is a referral and not a done deal. There is no negligence here. Ask yourself if she is suffering? Would you be surprised if she will still be around a year from now. You mention multiple medical issues, she is no longer walking, and the services she requires is well beyond memory care.
Let the referral occur but let them know it will be your mom and maybe your decision. Leave the anger at the door and be open minded
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Reply to MACinCT
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HelpPlease650 Jan 4, 2022
Thank you for your answer. Just to be clear we aren't angry about the referral of hospice. We are angry because they never consulted us about hospice from the nursing home before getting the referral call. We just had her care meeting a week ago and they was no mention of hospice; they said she was progressing, albeit slowly.

We are just very surprised and I wish there had been more transparency before getting a nighttime call out of the blue before hospice was mentioned. I get they can recognize things that we don't but it is incredibly inconsiderate to put in a referral to hospice without even alerting the family.
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Hello & much sympathy for your situation.

I don't know how your health system is holding up - ours is currently straining under a massive covid strain with staff fatigue & shortages.

I definitely think the next of kin should be notified immediately when the Doctor suggests comfort care is the new pathway (instead of the curative pathway you were on).

As for stroke.. stroke is a game changer. Sometimes they can be mild, with great recovery with basically no trace left. Sometimes massive & survivors left with awful deficits. There is also the multi stroke type. A friend's Mother had this. Each stroke left her more disabled. Took arm mobility, then leg, then speech, then swallow. Took 5 years of cumlitative strokes to fatally slip away.

To answer your questions (in my opinion);
1. Talking OK & moving to not? Yes, can happen. Further stroke or extention to bleeding in brain is my guess. Recovery if massive stroke? Probably only if young & fit. If dementia? Sadly no. Dementia is making changes in the brain. Depending on type, plaques, amyloid, TAU, blood vessels etc. Most all dementia are progressive & eventually rob the person of speech, balance & mobility - not just memory.
2. No. Substandard communication.
3. I personally wouldn't. It won't return her health. I'd put my energy into grieving instead.

You love your Grandmother, that is clear.

Hold her hand (if you are allowed to visit). Tell her you love her. (Mentally tell her if you are not). Be grateful for her long life.

Peace to her & you.
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Reply to Beatty
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I would wonder who called Hospice. When my Mom was in the NH, the Nurse was not allowed to suggest Hospice. I am to understand only the Dr. can. I got a call from the Nurse the Dr. wanted to send Mom for a swallow test. At that time she was bedridden by her own choice. She wouldn't get out of bed. I asked the Nurse what would the test accomplish, I felt this was it. I told the Nurse Hospice and she seemed relieved I said it.

I agree, the subject should have been brought up to you before the Hospice was called. I would talk to the DON and explain that it was upsetting to get a call from Hospice when the subject had not be discussed before hand. I was given my choice of Hospice agencies.
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Reply to JoAnn29
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HelpPlease650 Jan 4, 2022
Hi JoAnn29. Thank you for your answer. Yes I agree. I thought only the Dr. was only allowed to make those suggestions and from what we knew, they were out until late this week. I agree, it would have been best to know what was going on rather than sprung on. We will be getting more information tomorrow.
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I'm only going to address your second and third questions.    What kind of legal action would you anticipate could be suggested?    What malfeasance or malpractice has occurred?  What negligence?  I'm not sure "failure to inform" rises to that level, which it would have to under laws as well as standards of care in your area, and for your GM's conditions. 

I won't disagree that I think you should have either been consulted or advised, but that's not malpractice.  

An attorney could intervene, but you're articulate enough to handle that yourself.   

As to question no. 2, I think the current pandemic, shortage of staff are the primary reasons they rehab center won't discuss a referral, but there could also be other issues, such as that the hospice to which they referred your GM is affiliated with the rehab center, or has some corporate relationship to it.
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Reply to GardenArtist
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It’s just a referral. It’s an option for the family to consider. If you do not wish your loved to be on hospice then simply say no thank you. Elderly will decline and can decline quite rapidly despite competent efforts. Hospice services can provide additional services for the patient, and support services for the family and is focused on comfort while facing the inevitable. I agree that someone from the facility should have called and asked if you would consider talking to hospice services, but it’s no reason for legal action.
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Reply to Mepowers
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My father has just been moved to a LT care facility. Prior to this, he was in two different local hospitals for two different reasons, but both with the plan that he was to transition to LT care. This process has taken two months. Communication from the two hospitals (and now the care facility and home health care) is difficult. I do understand the major staffing issues. When we finally get a dependable contact person, they are temporary at best and we start over again. I feel your pain at not being called prior, but indeed they seem to just be calling to discuss the situation with you. I would be willing to listen to anyone and hear what they had to say, then attempt the follow up with the current care provider to understand why they feel this path is indicated.
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Reply to gailanncreates
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My mother was able to remain in memory care when I opted for hospice. she got an aide for 1 hr five times a week, a nurse coordinator a chaplain. They handled her drugs and incontinence supplies. When she broke her hip and was released to skilled, hospice was only three times a week.
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