You can absolutely bring it up! Many doctors aren’t great about transitioning to palliative care and wait way too long.
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@greenbutton you don’t even need to involve the doctor. I just called Hospice directly on a Friday afternoon, and by the end of Monday my father was enrolled. The hospice can determine if your loved one qualifies (or not).
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@greenbutton in the hospital, docs may bring it up and the inpatient hospice rep may pay a visit.
At home, I requested a hospice evaluation from my mother’s PCP, more than once (she was on hospice three times). Then the hospice NP came to do an assessment.
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After my dad had a hemorrhagic stroke in the hospital and he could not safely swallow, the doctors talked to me about whether he would want a feeding tube (no, no, no, never) and the social worker talked to me about hospice. He died a week later in the hospital as a hospice patient.
I would like to receive input and guidance from this very knowledgeable community especially since @greenbutton brought up hospice.
My dad, 90 years old with advanced vascular dementia, has been still mobile with a walker. Not fully functioning mobile, but regularly used a walker and had the elderly shuffled. He and my mom still live in their home and I have helped them daily the last 3 years. Mommy is still very active and healthy, but emotionally a bit fragile given my dad’s condition.
Sunday my mom and I noticed that he was definitely not himself. He had a hard time with balance even with a walker and was somewhat disoriented. He spent the day mostly in bed and we kept an eye on him. Monday morning mom called frantically because he was unable to get out of bed independently, which he was always able to do. He was definitely weak on his right side and when I finally got him to sit up, he was unable to keep his torso stable and heavily leaning to this right side and mom had to hold him from the back.
So paramedics were called and off to the ER. He had a similar episode in October and he “possibly had TIA at some point”, but doctors did not think it was a definite stroke that brought him to the ER. This week, he has been admitted since Monday for tests, etc. Since past MRIs, the latest MRI show he has had more acute ischemic changes that appear to be “chronic.” Therefore docs said his recent episode was not a stroke and given his age and advanced dementia there is nothing they can do. The ER doc and hospital residents both said that his trajectory is not good and we should consider home hospice through the palliative care program. He has been deemed “able to be medically discharged” as of Wednesday and PT and OT evaluation was done as well. Both therapists said he will need 24 hour care for the immediate future and possibly his strength will return once he is in a familiar home setting. They can’t tell if his right side weakness and balance is because he has been in the hospital bed for a few days. He can’t sit up on his own or stand up on his own. They both said his dementia makes all of this much more difficult.
To mom and me, his right side weakness and loss of physical strength, occurred before coming to the hospital but of course we are not medically trained so our observations doesn’t seem to matter.
Palliative care staff finally came yesterday and after seeing him for less than 5 minutes (the meeting got cut short because of PT’s arrival), I was later told that he may not qualify because he still appears to be physically strong and he’ll consult with the palliative doctor and will get back to me later today. I am beyond frustrated because I feel like we are getting the run around.
We fully understand dad is declining and don’t want any intervention to prolong his misery and suffering. He has a DNR, etc. We want his end of life, how long that may be, respectful and peaceful as much as we can provide. I just feel like doctors are saying we can’t help him so go to pallative because they will help and your dad should qualify. Palliative says well we think he not at his death bed so he won’t qualify.
Lastly, the attending doc said yesterday, it appears that my dad may also have sign of Parkinson dementia, but testing will be stressful to him and result will probably be low value. Therefore she would not recommend doing any testing.
Any idea how to approach the meeting with the hospital today?
There maybe a couple of things at play here with hospice saying that he may not qualify.
Not only does Medicare requires that a physician certified that in their best estimate a patient has a life expectancy of less than 6 months but, the hospice is also obligated to do their own chart review and assessment. They need to see documented weight loss, co-morbidities, recurring infections, etc… If those aren’t present, they may not be legally able to enroll a patient because the hospice medical director also needs to certify that the patient is medically appropriate.
There is also the possibility that if Medicare is paying for PT/OT, they may not pay for both.
But…there is no reason why your dad can’t have palliative care measures even if it’s not time for traditional hospice. Many hospice programs provide “pre-hospice” palliative care. If the program that evaluated your dad doesn’t have that program, ask the hospital social worker to make an appointment with another hospice agency that does.
Good luck! We were at the same place for a year with my mom. In the end, she didn’t have hospice until she had an active brain bleed and went to a hospice inpatient unit from the ER. Very frustrating for us but thankfully her facility was able to honor her wishes for no extraordinary measures.
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My dad was 83 years old and had Alzheimer’s and was a diabetic. He was put on Hospice while he was still able to walk without a walker, feed himself, somewhat communicate his needs, etc. He was incontinent and that was considered a qualifier for Hospice care. He moved to Memory Care and declined quickly over 3 months. He became combative when they tried to change his adult diaper or shower him. He was sent to the hospital to “adjust his meds” to help with his combative behavior and he passed away after 10 days. If he didn’t qualify for Hospice, he definitely would qualify for Palliative care. In our area, I believe your dad would be on Hospice-maybe it varies according to the Hospice.
Your input is helpful. Yes, I think als of those things are in play. My dad does not have any co-morbidities except for high blood pressure that led to vascular dementia. He has not had any weight lose or no recurring infections because my mom and I have taken care of him well. Dad himself has been very physically active until February 2020. Up to that point, he played golf (no cart) 3 to 4 times a week, did his own landscaping and even climbed ladders to clean his gutters even though we tried to forbid him.
His dementia neurologist in August said dad will continue to decline and that he will order hospice when he show no interest in eating. He also said he does not have any good experience with the palliative care at the same hospital system he is part of and it’s really not going to help dad. I think he is right.
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Thanks for sharing your dad’s experience. Mine is also incontinent, and his BM accidents have started to become daily for the last couple of months. Mine also was combative for a while but meds have helped the last year. His verbal ability has drastically changed the last 3 months as well. He now only replies with a word or two.
I think at this point, the best option is to hire a live in to help dad and mom. The hospital social worker will let us know later today if he’ll qualify for "rehab/nursing home in memory care. We tried that route last October and it was not a good experience and we had to bring him back home.
((Hugs)) to you, this is all so hard. American healthcare is so difficult.
We have found being very specific about what Dad can and cannot do is helpful. “he can’t walk the three steps into the house without help” is more illuminating than non specfic mention of difficulty balancing, etc. I also include “she is home alone with him”.
Don’t ever hesitate to push back on assumptions. It’s fine to say “but he was weak on that side BEFORE he was here, that’s why we came”. And lastly, I always ask " So when this happens again, what is our best course of action". In my dad’s case , their advice was to drive him 2.5 hrs and wait in the big city hospital ER. I replied “you understand that is not actually a real option here, just so we are clear”.
We are in the awkward space of too fragile to be home on their own, but nothing treatable. Some days it feels like the doctors want us to just leave my parents in the woods and run away.
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If your dad can be cared for at home, that is the route I would choose! I wish my dad could’ve stayed at home, but he was 6’4" and still unbelievably strong. It took 4 people about an hour each time he had to be changed and it was not safe for the caregivers. Sending him to the Memory Care was so difficult for my mom. She says that is her biggest regret (even though they were very loving, patient, and kind). Eventually, sedation at the hospital was the only option because his combative behavior could not be controlled with all the different meds they tried. My dad was always a gentle giant, so I truly believe he is in a better place now. He would have hated knowing that he was physically hurting his caregivers.
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@greenbutton. Hugs to you as well. Yes, our situation is very similar, except my parents have access to 3 hospitals all within 15 minutes. I feel like this is purgatory for him and us TBH. Both ER and attending docs said he should be in hospice so he doesn’t return to the hospital because there is nothing they do for him. He should be home where he’s familiar and comfortable but you and mom have to make sure he’s taken care so he’s comfortable and not get to a point to return to ER!
In my case, I am the preferred child to my mom to handle everything and I mean everything decision. One sister is out of town so can’t help much and one sister who lives in the same suburb as parents is not reliable. I am constantly weighing the pros and cons of everything (physical and mental health, financial, etc) - not just for dad’s care and needs but mom’s as well. TBH some days I just want to run away but know I can’t.
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I agree that bringing him back home will be best for him. It will be very hard for mom though emotionally to see daily how deteriorated he is. She keeps asking him to speak to her, but he doesn’t and just stares at her. This is really hard on her.
Someone admiringly said to one of my siblings "I don’t know how you manage all this so well " regarding the many issues…
…,and he replied “What makes you think we are?”
I think the feeling of being in the weeds is universal.
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Many families can have way too much hope when it comes to a stroke, and the patient is not making progress.
No issue with rejecting a feeding tube and having a natural death as in this situation.
Sometimes one has little time in key moments.
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Please don’t feel guilty if you come to the conclusion that he can no longer be at home. It may or may not be the best choice, depending on what the doctors are saying and what the financial picture is. It sounds like there are multiple issues at play here. All the best to you. It is so hard.
Maybe more time is needed for evaluation - and if ‘discharge to home’ cannot be widened to other care settings. A rehab setting (not an aggressive one, but one that has the PT, OT, ST services and has 24/7 care so proper nursing care and documentation can occur). No one has a crystal ball. It sounds like there will be a big change from what has been occurring the last 3 years with your daily help. You need some time to find the best option for his care. Try to keep him in the hospital as long as possible, because if he goes to rehab, there will be a limit there too - and the daily charge after they deem no improvement (and Medicare/Supplement will not pay for any more days) will be high. If his strength does return at rehab, maybe you can arrange more home care and bring him home.
Tough situation, and how responsive the medical team is with various options depends situationally.
Prayers!
Emotionally it will be hard on your mom with seeing him deteriorate wherever he is.
I hate it when people say that to me. “I don’t know how you can stay so strong.” Ugh, me, either, but I just keep going. I don’t say things like that to other people. More helpful would be, “What can I do today to help you? Make you a meal? Help you clean your house? Watch your kids for a few hours?”
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My recent experience with my mom was very similar to yours. She had been walking with her rollator, up until two days before she went to the ER - because she wouldn’t or couldn’t sit up or stand up. I had to change her in bed, but she was uncooperative and mentally more confused than usual.
After 7 days in the hospital of course she couldn’t sit and stand without assistance but her insurance denied rehab in snf. After three appeals, they covered it for two weeks. My mom remains in the nursing home because I can’t physically care for her on my own.
She has not regained any strength or ability to sit up (hold her body upright), much less stand and walk. She has a roommate and attends some activities, although she doesn’t participate much. I visit daily but am torn as to whether she is better off with me hiring a ton of help at my home (which would create chaos for other family reasons), or if she’s better off where she is, around other people.
No one has mentioned hospice - I assume because her blood pressure is her only medical issue other than advanced Alzheimer’s and vascular dementia. She has been incontinent for five years and her doctor never mentioned palliative or hospice care to me as something she was ready for.
If you hire help at home for your dad, make sure you and your mom don’t get hurt trying to care for him if the helpers aren’t around. One of my mistakes was underestimating how hard it would be to maneuver my mom when she would become a dead weight and try to drop to the floor. Same with rolling her in bed. There are techniques, but they still require strength and flexibility. At the nursing home, they use a hoyer lift.
Like you, and most of us, I imagine, I had many moments of wishing I could run away during the 9 1/2 years she was in my home, cared for by me. It’s really tough!
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All the issues you outlined are issues I am going back and forth on. He’s not combative but not cooperative because of the advanced dementia. I think “rehab” will eventually say he’s not progressing (ie too difficult). I struggle with the facts that going to another unfamiliar facility will make things worse for him. Mom may not have him 24/7 if he goes there but she’ll fret 24/7 about his care and eating that she’ll rush there every day and not take care of herself. That is what she did last October.
Hospital doc confirmed just now that home hospice won’t be approved but he can get once a month palliative consult until he’s ready for hospice. Doc also confirmed he’s going to get worse but recommends he stays on his meds such as high pressure meds, plavix, urinary support etc.
If he goes to rehab, it will be me who has to communicate with the staff there daily and most likely visit him daily to relieve mom. It will also be me who will have to do all the leg work when they kick him out of rehab. I guess I’m selfishly thinking about how to lessen my load just by passing rehab option and just bite the dust with a live in - $10k a month approximately. No, my parents don’t have huge assets, but they won’t qualify for Medicaid. I think I can stretch it so there’s care money for 2 years for dad.