Communion Of Dreams


Dying at home.
August 14, 2007, 4:01 pm
Filed under: Alzheimer's, Government, Health, Hospice, Sleep, Society

About 15 months ago, I wrote the following:

I sit, listening to the labored breathing coming from the next room. The end will come probably sometime this next week, likely as the result of a fever and while she is asleep. As deaths go, it’ll be one of the best possible, with minimal pain, discomfort, and fear.

*******

…because some short time ago, when it became clear that my mother-in-law was not going to recover from her latest medical problems, my wife and I decided to enter her into Hospice.

I knew of Hospice as an medical movement designed to make the last weeks or months of life as comfortable as possible, with a primary emphasis on palliative care. And this it is. But I’ve discovered that it is so much more.

Our “hospice team” includes a nurse who comes by as often as we need her. If that’s once a week, or twice a day, it doesn’t matter. We have on call personal care aides, a chaplain, a social worker (to help me and my wife with any of the issues surrounding the imminent death of a loved one), as often as we need them. If we need any medical equipment, from a hospital bed to oxygen, it’s arranged for. All prescribed meds for her condition are delivered to our door. Basically, anything we need or want which pertains to my mother-in-law’s health is provided. And it is all 100% covered by Medicare.

And it is a shame that you have to die to get this kind of medical care.

As is clear from my other posts, my MIL actually didn’t die. Yeah, she’s one of those rare people who “graduated” from Hospice care. Basically, we were too good at providing care for her, and she just wasn’t ready to go yet. So, after the initial 90 days of being enrolled, she was dropped from the Hospice program administered by one of the local hospitals. I’m actually still a bit upset with the way that transition was handled – my wife and I very much felt like we were abandoned. The extensive network of support we’d had just disappeared, leaving us unsure how to proceed (because while my MIL wasn’t ready to die, neither was she going to ‘get well’, and her care needs had increased significantly.)

Anyway, now we’ve noticed another downturn in her condition, and one of the significant markers of end-of-life has shown up: my MIL has dramatically increased how much time she spends sleeping, with no indication that she is suffering from any secondary illness or infection which would explain it. Her afternoon nap has gone from 90 minutes to typically three hours (or longer). And she now wants to nap in the morning after breakfast most mornings, for an hour and a half to two hours and a half. Noting this, my wife sent me this: Eldercare at Home: Chapter 28 – Dying at Home which contains the following:

The end of life cannot be predicted for any of us. We do not know when it will happen, who will be with us, how it will occur, or what we will feel. However, we do know some useful things about how many people die and this can help put your situation in perspective.

Many misconceptions exist about what can happen during the final days and weeks of a person’s life. One stubborn myth about dying is that the person will die from only one cause. In some cases this is true, but many older people do not die from one major event or for only one reason. Instead, they die because of many different factors that combine to slow down the body’s important systems, such as the heart and lungs. In a sense, the physical body slowly “gives up.”

*******

Certain physical signs warn us that the end of life is growing close. Most people with an advanced, chronic illness spend more time in bed or on a couch or chair. People with any type of advanced disease eat less food, and drink fewer liquids. They also sleep more, lose weight, and become much weaker.

Not every warning sign is physical, however. People may talk about “leaving” or “having to go.” Their dreams make them feel as if they want to “get going” or “go home.” Although this does not occur in every situation, this language and the emotion behind it are ways of talking about dying. The person also may ask to see special friends or relatives, and some haziness or confusion can occur as each day blends into another. Keeping track of the day of the week becomes less important, as do other daily living details.

My MIL has been doing more of this, though it is difficult to really say whether it is pertinent, since she suffers from dementia. Still, it is good to see it described, to be able to point to this document to help friends and family understand a bit better where we are (the excerpts I cite are just one small bit of that chapter – and the whole thing is worth looking at).

And it helps some with my ambivalent feelings towards Hospice, which, in spite of what happened to us, I know is a good program. I just wish I knew when to turn to them again – having the full support followed by being dropped like a hot potato isn’t something I think I can take emotionally again. Not at this point, anyway.

Jim Downey


3 Comments so far
Leave a comment

As a hospice doctor, I can understand how frustrating it could be when someone ‘graduates’ from hospice. The health care system can do good things for the acutely ill (make em better), the actively dying (give em hospice), but not much for the chronically ill, who are neither getting much better or declining.

I would encourage you to contact your local hospice agency again, and have them come out for an evaluation. They want to serve patients, and hate discharging/graduating them, because many hospice providers realize that even with some preparation, you are still doing your caregiving more alone right now than with hospice.

Comment by Christian Sinclair, MD

Dr. Sinclair,

Thanks for dropping by, and your perspective. We actually have been in contact with our local Hospice, who had said that they would leave the determination up to us as to when to re-admit my MIL. (Her primary is willing to sign off at any time, but then, he’s been saying for four years that she’ll die within six months.) When we did contact them, her case was evaluated according to the criteria of just Alzheimer’s, without taking into consideration her other medical conditions. In other words, we were told that she did not qualify, because she was still capable of formulating a coherent sentence (not that she really has a handle on where she is, et cetera, as I have discussed.)

*sigh* I really can’t complain too much, since I know that services are stressed and bureaucracies have to function according to their own guidelines. Not that that helps someone here in the trenches…

Anyway, thanks again, not just for stopping by, but also for your work worthy of a saint.

Jim Downey

Comment by Communion of Dreams

[…] wrote a couple weeks ago about our previous experience with Hospice for my mother-in-law (MIL).  Well, […]

Pingback by Another try at Hospice. « Communion Of Dreams




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