Complex care at home without hospice
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Anonymous
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My elderly parents want to stay full code, do not want DNR, etc. This is their considered decision.
But the only framework for care of multiple-serious-health-issues elderly at home seems to be hospice. I know there’s the palliative care model too but we haven’t been able to find an in-home option for that where they are. That means any time something comes up the only option seems to be dialing 911 and going to the hospital. Doing this over and over again is such a stupid waste of resources. I’m really just venting. If anybody has gone through this and has any other options please let me know. I just found a home medical health service that may do home visits from nurse practitioners and doctors so I’ll try it but I am not very optimistic. |
Anonymous
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Medicare will pay for your parents to have a visiting nurse 1-2 times a week (as needed), and they will also cover PT and OT as needed up to twice a week. The service my parents use gave them a number to call instead of 911 when they have a problem - the oncall nurse will triage them and decide how to get them the help they need. I think this is to cut down on ER visits.
Alternatively, you can hire your own caregivers for about $28/hour for 4 hour minimum shift or you could hire a private RN to look in after them. There are no great solutions in any of this. |
Anonymous
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Yeah, we have private duty nurses coming in. But it’s not like they can do labs or anything. They need doctors orders for everything. And if there’s any problem their default is to call 911.
There doesn’t even seem to be any way of getting to be admitted to the hospital without going through the emergency room. Which is really hard for elderly people. I found a service that claims to come to the house and do some basic medical care, blood draws for labs, even EKG apparently. We’ll see if it’s any good. |
Anonymous
| In order to access care, you might need to go through the ER. My dad was declining rapidly, and his Primary Care doc told me to call an ambulance. They admitted him, did a lot of blood work, CT scan, xrays - pretty much worked him up and got a handle on his conditions and meds. Then, the social worker helped us get equipment for home and line up home health care for him. It wasn't ideal but a lot more efficient than him traveling around to different doctors, labs. |
Anonymous
| It almost seems like anything urgent is not handled by primary care docs any more. |
Anonymous
| They seem to be spread too thin... |
Anonymous
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Do your parents know, like really know, what happens during cpr? Once I showed this to my Dad, who was very much 'do anything to keep me alive', he changed his mind. He realized that life is more than just the body still living. That quality of life is just as important.
And yes, use 911 every time there is an issue. Once they are hospitalized, you can work with the hospital social worker to see if there are other alternatives. https://www.npr.org/sections/health-shots/2023/05/29/1177914622/a-natural-death-may-be-preferable-for-many-than-enduring-cpr#:~:text=Survival%20after%20CPR%20for%20in,2.4%25%20for%20those%20over%2090. https://dailycaring.com/the-reality-of-cpr-for-seniors-get-the-facts/ https://www.compassionandchoices.org/resource/cpr-what-you-need-to-know |
Anonymous
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My parents have been educated about CPR yes. Everybody seems to believe it’s a lack of knowledge and so it keeps being explained to them again and again.
But they philosophically want everything possible all the way to the end. They want to maximize life. As in literal life, drawing breath, not quality of life. No one can believe that this is their choice but it is their choice. I know it may be not the norm but if we are giving people choices and saying we will respect their wishes it feels like there should be some support for their actual choice. And with the elderly, I just feel like there isn’t that kind of support for their choice in the way that there is support for hospice. |
Anonymous
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Inova Home Health might be an option for you. If one of your parents is not driving or one of them is the caregiver of the other they can see both of your parents at home. They also have mobile bloodwork and maybe even X-rays and imaging. It is covered by Medicare.
https://www.inova.org/our-services/inova-home-health |
Anonymous
Op, from what you are saying about them -prioritizing actual breath over freedom and quality of life - it sounds like the best way for them to achieve this goal is a nursing home, which is a medical environment with the prime goal of life (safety) over freedom and independence. If they want to stay at home, they are prioritizing freedom over health and creating an impossible problem for you to solve. Are you up for this task, op? My parents are insisting on staying in their home and I have accepted that it will be imperfect medical care and eventually quite "unsafe" for them, but that is their choice and problem, not mine. And their real priority is independence and control over their own lives. So at least the values match up. |
Anonymous
The reality is, some choices are more indefensible than others, and you really cannot expect support for all types of choices. Your parents will not escape death and asking to spend endless resources and your time trying to make that happen is a waste. |
Anonymous
I had a family member who felt similarly and we had the same struggles to provide support at home. Finally we sat down and laid it out--the only way to honor their choice in terms of medical intervention was to move them into a facility where the medical interventions they wanted were readily and quickly available. We involved them in every aspect of looking for that place, so that they felt like their needs and choices were being honored. Ultimately they chose an assisted living center with an adjacent skilled nursing facility (and the option to move from one to the other if needed). Although they mourned the loss of their home, within weeks they were fully engaged in all kinds of programming and opportunities that weren't available to them before and they felt supported in their medical wishes. I think the key for us was being honest about what wasn't on the table and giving them as much freedom to make the choices that were an option. |
Anonymous
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If you want to maximize drawing breath on this planet, you end up in a skilled nursing home if you need complex care. My mother was on the road to death living at home and yes relying on 911 and generally not being properly cared for as it's impossible to do so in that situation. It was lurching from crisis to crisis and sure she went out and saw doctors and people came in at various times but she was deteriorating. Due to our family situation, she was essentially forced into a nursing home and did not want to go. She prioritized independence at home. She is 87 and looks better than she's looked in a decade at the nursing home. They sincerely brought her back to life and she's chugging along.
Their option is to get into a group care setting of some sort where their medical issues will be dealt with proactively and promptly. Doing what they are doing at home, they will die sooner. Lay it out for them. It's their choice. |
Anonymous
| Where are they? We used a volunteer/community based hospice which was really great. It was really a combo of traditional hospice (with access to nurse and doctor) but also volunteers who usually were nurses also to manage your case. It gave us someone to call and come right away. When my parents felt comfortable with that there were far less ER visits. |