Gary Passed Away: Some thoughts on my hospice experience

@standinginfaith - Oh my heart!

I am so so sad to hear of your experience, especially under these circumstances! Those people should NOT be in that line of work, in my opinion! (But not for you to deal with at all, especially not now...)
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Not that this concerns you now, but I am facing the hospice decision for my mother, and am listening to others' trials at this point in their lives to see whether it is the right time for this step. Our mother I am told is declining overall, but has no major medical conditions other than declining stability/highly limited mobility and increasing confusion about her circumstances.

I am advised by our mother's care facility doctor to consider placing Mom under hospice care through their facility. I am also advised - by my retired geriatric physician sibling - that facilities make a great deal of money from the switchover to Medicare-covered hospice care. This makes me question this step, not to mention that I have questions about how available the facility's designated hospice nurse and 2 aides can handle the 24/7 attention I would want for our mother in case of need, as she certainly is not the only hospice patient at this (upscale - i.e. very expensive, but all of them are) personal care facility, which our family has been associated with since my grandmother spent time there (over 40 years ago) in a coma for 2 years, and my father was a Trustee and lived there in independent living with my mother for 7 years before he passed away in 2013.

My mother is losing weight at 90 pounds now, but has a good appetite fortunately, though the food quality leaves MUCH to be desired.

If anyone would kindly share their decision on taking this next step under similar circumstances, I would greatly value and appreciate that. Her doctor states there is no doubt she would qualify for this Medicare-covered hospice care, and that if she were to improve, she could come off it (all with the necessary medical evaluations being done), and even then go back on it again if/as decline resumes/continues.

Finally, I was just cautioned by a family friend with her mother (at a different, upscale facility) in hospice short-term, then back out of hospice for now, and into memory care: that Medicare will NOT cover her regular medications (like for heart, thyroid, etc.) - ONLY those medications during hospice that are related to pain management. So I have to wonder what those medications will cost for us to continue her on out-of-pocket.

(I only mention "upscale" to refer to the extraordinary costs, yet with the same basic struggles, staff shortages, food quality issues, bureaucracy and communications issues that most assisted living facilities present these days.)

Thank you everyone. Mayo Clinic Forum is a lifeline in so many ways, and for me for so many years too. It makes these hardships less isolating, and sometimes less heartwrenching.

@standinginfaith - Oh my heart!

I am so so sad to hear of your experience, especially under these circumstances! Those people should NOT be in that line of work, in my opinion! (But not for you to deal with at all, especially not now...)
- - - -
Not that this concerns you now, but I am facing the hospice decision for my mother, and am listening to others' trials at this point in their lives to see whether it is the right time for this step. Our mother I am told is declining overall, but has no major medical conditions other than declining stability/highly limited mobility and increasing confusion about her circumstances.

I am advised by our mother's care facility doctor to consider placing Mom under hospice care through their facility. I am also advised - by my retired geriatric physician sibling - that facilities make a great deal of money from the switchover to Medicare-covered hospice care. This makes me question this step, not to mention that I have questions about how available the facility's designated hospice nurse and 2 aides can handle the 24/7 attention I would want for our mother in case of need, as she certainly is not the only hospice patient at this (upscale - i.e. very expensive, but all of them are) personal care facility, which our family has been associated with since my grandmother spent time there (over 40 years ago) in a coma for 2 years, and my father was a Trustee and lived there in independent living with my mother for 7 years before he passed away in 2013.

My mother is losing weight at 90 pounds now, but has a good appetite fortunately, though the food quality leaves MUCH to be desired.

If anyone would kindly share their decision on taking this next step under similar circumstances, I would greatly value and appreciate that. Her doctor states there is no doubt she would qualify for this Medicare-covered hospice care, and that if she were to improve, she could come off it (all with the necessary medical evaluations being done), and even then go back on it again if/as decline resumes/continues.

Finally, I was just cautioned by a family friend with her mother (at a different, upscale facility) in hospice short-term, then back out of hospice for now, and into memory care: that Medicare will NOT cover her regular medications (like for heart, thyroid, etc.) - ONLY those medications during hospice that are related to pain management. So I have to wonder what those medications will cost for us to continue her on out-of-pocket.

(I only mention "upscale" to refer to the extraordinary costs, yet with the same basic struggles, staff shortages, food quality issues, bureaucracy and communications issues that most assisted living facilities present these days.)

Thank you everyone. Mayo Clinic Forum is a lifeline in so many ways, and for me for so many years too. It makes these hardships less isolating, and sometimes less heartwrenching.

@brandysparks You have alot of decisions to make..I can share this much.. my younger sister had to put my parents (in their 90's with serious health considerations in an assisted home living.. alot of medical issues.. it was a 2 bedroom "apartment" which was very expensive.. they would actually take patients to their dr s on Tuesdays..they lived in Cincinnati.. they fed them good meal and had quality health care providers 24/7..my Daddy passed with a siezure after several strokes in 2023 a month before his 99th birthday..and Momma passed last year July 3 at 95.. now she was NOT place on hospice until about a week before she passed.. she did not eat her blackeyed peas Jan 1st.. and said "I'm just gonna see what happens" (this from someone who carried them to me in the hospital 30 miles each way when I had a hysterectomy..I was appalled.. but knew she was giving up without my Daddy ..married over 70 yrs) so she got a perforated bowel and afib.. and she was ok for several months but then declined rapidly..then and only then did the facility recommend hospice.. and she was only on it about a week or two I think.. please be careful.. the medical system is very ..well.. crooked and I remain suspicious of all of them..check the cost of those meds... when my David had cancer in 2011.. his Nexavar was $12,000 a month.. (we finally got it free from the VA but they did not tell us it would not effect the lymph node cancer just the liver and kidney.. we were so hopeful. until he said "I think I need to go to the hospital" and they lady did a PET scan and said " the cancer is all over him and he's gonna die real soon..I almost fainted!! Ju
st recently I got a Xolair shot and it would have been $4000 an month.. I hope I've helped you some.. you are a good child ..wishing and praying the vest for you!!

@brandysparks
A quick set of thoughts.
I would ask what, given their extensive experience, they anticipate as the specific changes that would likely be made in your mother's care if she goes into hospice-- in terms of: Medications given that s/he cannot prescribe now( do they think she needs or is in imminent need of strong pain relief?), equipment (hospital bed?), assessments, additional care, other.

It is important to know that Hospice does not provide additional physical caregiving attention outside of: nurse visits, and people who come to to do bathing. There are hospices that run facilities where the patients board. I don't know about those. Most hospice services are delivered to the house or the facility where the person is housed. Clearly, we had in-home hospice so I don't know anything about the other cases.

The greatest benefit is the 24 hour access to nurse advice (and follow up visits) to adjust comfort treatment as symptoms change. You are not on your own trying to figure out what to do and you do not have to wait to reach your doctor or order a prescription. In a care facility I don't know how that works. Do you need to trust that the staff is watching for this and using hospice fully to keep your mother comfortable? Do you have access to the hospice nurse yourself?

Another great benefit is an assigned nurse who visits your person regularly and therefore knows them and the history. At the outset, I was asked how often I wanted actual nurse visits. It first settled on 2 times per week. When they think the end is near the company I used increased that to daily. They can check on things like making sure that there are no emerging bedsores, take vitals to assess changes, make suggestions on how to position them in bed, etc.

There is also a hospice doctor for all the setting and adjusting of the medications and it was great that she was in calls with me and the nurse and even came to see Gary.

A much bigger topic that I cannot do justice right now: What are your mother's wishes, and yours (if you are her Legal Medical representative) about prolonging life. Starting hospice service is first and foremost a declaration that you/she do not want to intervene medically to treat any damaging medical condition that exists or arises. Regarding Eating: There is a lot of good reading to do about this. At end of life the body starts slowing down and digestion is one of the things that slows. People eat less and sometimes people stop eating altogether because they no longer feel hungry. We all tend to see feeding our loved ones as the key thing that we can do to express our love and care. I had to adjust that thinking and help my caregivers adjust to not pushing food on Gary .

Existing medications. yes, you might ask the doctor which existing medications would be continued under hospice. We kept all of them at first and then cut some out in consultation with the hospice doctor over time. So yes, we had to continue to pay for those out of pocket.