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.
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.
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.
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.
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.
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.
My MIL had a stroke at 93, lost some function on her left side, wouldn't eat, and then got Covid. Hospital was pushing for a feeding tube-we said no. In time, she recovered, went into hospice, but was transferred back to NH care - in a wheelchair but still feisty as ever. So recovery is possible, with P/T and lots of care and advocacy.
Bear in mind that your grandmother has been through a lot, and it seems she may well do best in hospice care. I hope that Covid restrictions do not affect your visiting privileges, as it's important for you to be near during her transition and thereafter. I wish you all the best in navigating this emotional journey.
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!
For our situation, mom was in a palliative care situation. She received the meds that helped her have a quality life, her BP meds, her anti anxiety meds, nausea meds when she had a digestive virus etc. We had already decided we would treat things like a UTI, or a broken bone, or needing antibiotics for something, wound care if necessary, and all that ok with hospice. We weren't going to resuscitate in a cardiac event or consider being put on ventilator.
But hospice got her more help. An aide came weekdays to help get her up and dressed, and bathed. A nurse came weekly to check on her and report to me. A social worker came 2x a month, a Chaplin came 2x a month, a doctor came monthly. All paid by Medicare at no cost to mom. They also supplied incontinence supplies.
They called me with updates, the social worker and Chaplin, both were great, they sat and chatted with her. Also called me for support of family members.
So don't dismiss out of hand, especially if you think that she isn't getting enough attention.
My mom recently passed away, and once her condition was clear that this was probably not going to get better, all those people, the aide, the social worker, the nurse, the Chaplin, they came every day her last week. And the SW and Chaplin have followed up after she died. The hospice nurse came after she died to verify, and took care of all of the contacting authorities and funeral home.. They were a great help.
That said, she's had periods of time when she looks and sounds like her pre-stroke self. She's also had periods of time when her thoughts are difficult to understand. For example, she thinks the police are looking for her and there's a man living in her closet. She's had mobility problems since way before the stroke so it's hard to know how much of the current problems are due to the stroke and how much would have happened anyway because she's got multiple other things going on in terms of her health.
Communication with providers is difficult and, like others, I have learned things the hard way that should have been discussed in a care conference. Once, something drastic happened which resolved well, but of which I was not aware and should have been. The care conference was the DAY before and no one mentioned this change to me. (For the record, it's not something that would be observable during a visit so we would have needed to be told of it and were not.)
I recommend you ask the facility workers about the timeline and the specifics for them to consider hospice. It's okay to ask them how this came about and so quickly.
There's no reason to believe negligence is the only reason for this.
While I can't comment on how they specifically conduct their duties at this place, by and large, many NHs are short staffed and doing the best they can. Toss in covid and many NHs are struggling to do the best they can.
Hospice provides great assistance to the patient AND the family. Like others have said, it's scary to have that word in your mind. People on hospice CAN do well with hospice care and can be removed if they do better.
Hospice is a great service. Best wishes to your grandmother, to you, and to your family.
Recognize that a referral to hospice is a medical decision made by healthcare providers when there is nothing believed to be available to make someone healthier, and rather, comfort is the priority. Most hospice-referred patients survive six months or less.
You write that you and your mother are “primary caregivers” but also that she is living in a “facility.” The doctors, nurses and employees there are her true primary caregivers, not you.
What reason could you possibly have for suing? Medical mistake? Even if there was one, there are no lost wages. There are no financial damages. If you find a lawyer willing to investigate, they will only be taking your money.
The silver lining in all your personal regret is that she is still alive and you can still spend time with her.
Although you can’t have her back as she once was, do not waste a minute when she is here. She will not be here forever. Make her a priority while you still can!
Usually a hospice referral is for a person that is expected to pass in less than a year. It appears that her health has taken a turn for the worse and you need to get the facts from the doctor. Hospice care will make sure your grandmother is comfortable for the remainder of her life. Usually people in hospice can not progress or paricipate in therapy.
Its been 2 weeks almost since ur post. Have u been able to get things straightened out? Was grandma placed on Hospice?