I’m sorry, @DeniseC. That is a hard transition.
@DeniseC We started hospice care for my dad in his home just a couple of weeks ago, for the very same diagnosis, and while I started out feeling sad about it, I am also so happy that my parents went in that direction for my dad. When I speak to my mother now I sense some relief and less tension, knowing that the program is in place and is a resource. For us there was a sense that we are finally doing the right thing, my dad doesn’t have to deal with hospitals any more, and from now on his comfort is the only focus. It felt like a weight being lifted off, and we spend our time thinking about how life is pleasant now, rather than what hospice ultimately means, since none of us know how much time he or anyone else has left anyway.
Thinking of you, @DeniseC .
Thank you all your words of support. It truly helps to hear them.
Intake chat went well and it is a sense of relief for the whole family.
Rushing around and dealing with hospitals really detracts from caring for fragile aging seniors. Hospice and palliative care can be very helpful and are underutilized.
Ironically we were advised that the fastest way to get into hospice was to go through the emergency room yesterday. The ER was overwhelmed with flu patients as well as other emergencies and we had to wait 4 hours to be seen, past office hours for intake.
We declined admission and went home, thinking the visit was for naught. The ER documented the visit well enough for the cardiologist and hospice to approve hospice care this morning. Grateful.
@DeniseC you will see it as a gift to your father, yourself and the rest of your family. Mixed emotions are to be expected. I have to say, the whole ER business seems crazy to me. In my area, any health care provider can make the referral at request without any sort of documentation.
And it never rains but pours for some people. My dad got a cold from my brother who had pneumonia. And my SIL dad is in the hospital with a kinked small intestine…removed all but 100 cm of it. He coded on the table but they brought him back, she made the drive. 350 miles, then had to come home when she felt she was getting the cold and my dad was in the ER…with the flu. Just hoping he avoids pneumonia, but their youngest D is starting to cough and have chills…yikes all are sort of ok at this point but she wonders why her back is stiff…
This Was Not the Good Death We Were Promised
Hospice care failed my father when it mattered most.
https://www.nytimes.com/2018/01/06/opinion/sunday/hospice-good-death.html
Sadly, as the time draws closer to have a loved one undergo a hospice evaluation, the family is more than likely tiered, sad and overwhelmed. It is so important to be aware of the different hospice organizations in your local area and what there ratings are. A recommendation from a friend, nurse or PMD is a good start to begin your investigation. Most hospice organizations will bring a “comfort pack” to your home and place it in the refrigerator. They will instruct the family, caregivers, etc. how and when to administer the medication while waiting for the hospice nurse to arrive. It usually contains medications for pain, increased secretions, fever, constipation, and agitation. They will draw up the liquid morphine and have it available in pre-filled syringes. I am so saddened to know that some hospice organizations have failed their primary mission and patients and families have suffered.
The NY Times article was interesting. I know many people who have had hospice care, primarily for their parents, given that I am in my 50’s. Most of the experiences have been positive and most people I know would choose it again for themselves.
My first experience with it was in the mid-1990’s, when it was much more rare. My friend’s mother, who was like a second mother to me, asked to placed into a hospice (I don’t think they had at home yet) and we visited her there. The place was run by nuns, who carefully covered every religious sign in the room in deference to my friend’s mom Jewishness, even though they were not asked to do so. My friend’s mom slipped away after about one week, 40 minutes after her only son arrived to be with her. I became convinced after that that hospice was the way to die.
Later, in home hospice came into vogue. My neighbor chose that. In her last days, her D panicked and called 911. The mom was thrown out of hospice care, but died at the hospital about 3 days later. The D told me that her mom was not in pain but she is still angry at herself because her mom didn’t die in her bed.
My MIL and H have told me they want in home hospice if the need arises. I feel that the responsibility for dealing with that will fall primarily on me, but I have agreed to it. I have told my children that I should have hospice care at a facility UNLESS one or more of the children is willing to either have me in their home or stay in my home with me. It is to be their choice, I do not want them to feel burdened by it. I do not want my children to miss work, have any future grandchildren traumatized by me dying in front of them or the like.
Last thing, my aunt was in hospice care at home for awhile before I moved her to assisted living. Apparently, at least in NY, people can get hospice care just by being very old (aunt was 91 at the time). I was given vials of morphine and other meds and told that I could give them to her if necessary. One of the reasons I moved her to AL was because she was begging me for the meds. I moved them to my house so she couldn’t prevail on an aide to give it to her. After she moved to AL, I disposed of them.
Overall, though, hospice is a good thing. Maybe it needs some tweaking but I think it has reduced pain and suffering, allowed people to die in a way they prefer and has saved money, though that’s the weakest reason for it, IMHO.
The article reflects the pain of loss. I’m sorry for what the family and the father experienced. But I feel obliged to say, we know so very little about that situation or the particular sort of agency. CMS rates hospices annually. Earlier, we discussed how different organizations can operate differently.
It’s not easy to do the due diligence when in crisis. If you have elderly or sick relatives, do think about checking options and ratings in advance.
Unfortunately, that article about hospice reflects what has been happening with hospice, as far as I can tell from reading other articles. With the explosion of interest in hospice, plus Medicare covering hospice, for-profit hospice organizations have sprung up. Some, sadly, are either unscrupulous money-grubbers or inexperienced/incompetent organizations that have not allocated adequate resources to take care of their patients.
Be careful when you sign up for hospice.
But some are very fine operations. Where I vol, oversight and planning are stringent. I deal directly with families whose loved ones are in care, the bereaved, and previously with feedback.
No, not all areas will have this quality of operations. But that’s like many hospital, doctor, and eldercare issues. The need is to be informed. I’d hate to see families turn away from the care because there are some unfortunate reactions.
I have a friend who was a hospice nurse for many years. She became an RN specifically to work in this field after she took care of her husband as he died. She recently retired, after a couple of mergers that changed the organization where she worked. I guess due diligence is necessary.
An interesting article about dying.
https://www.newyorker.com/magazine/2018/01/08/my-fathers-body-at-rest-and-in-motion
Some hospice organizations are very fine operations. Others are either crooked money-grubbers or merely in over their heads. Do your diligence.
I agree that hospice care varies in quality. Also, a person can receive good end-of-life care without being in a hospice program. My dad died 14 years ago this week. My family is fortunate to have a very good continuing care retirement community in the small town in which my parents reside, two blocks from the house where I grew up and where my mom still lives. For the final two weeks or so of my dad’s life (once we had decided to stop life-prolonging medical care), he resided in one of the nursing-care beds at the facility and received loving attention from the staff. My mom could walk to the facility from the house, and sometimes family members stayed in the room with my dad overnight.
Just read this checklist of warning signs for the elderly, but not much help with what you actually DO:
http://abc11.com/family/10-signs-your-aging-parents-need-help/2851169/ 10 signs your aging parents need help
My father cannot get up from a seated position without help - a chair without arms makes it impossible. So, what can or should be done?
@rockvillemom – get him one of these:
https://www.samsclub.com/sams/lift-chairs/9156.cp