What caregivers deserve

November 10, 2014 at 2:37 PM (Uncategorized) ()

I’m having that satisfied feeling of a long term project brought to completion. I know a caregiver. Smart and thorough. She made the choice to care for her severely disabled son for nearly all of his sixty years on the planet. He wasn’t always the most respectful or grateful person either which can make caregiving more difficult. She did so without much respite, in a two story inaccessible home with her son “trapped” on the second floor.

Looking at their future I used information and referral and my own knowledge of his state’s accessible housing and long term care availability and passed the information on to him.

You can’t make someone act on information, but I had hopes, and he slowly began to work through the information, and learn (better late than never) the life skills needed to manage the basic bills for the home…
Physical safety for both became a concern when she could no longer care for him. I wrestled with calling Adult Protective services, but did not, since I don’t like stepping on the autonomy of people I’m working with to help.
His family built on this and did the research, and as of this weekend both are ensconced in a senior accessible apartment. She has the beginnings of help at home and he has a part time aide. It’s not enough, but it’s a start.

When I worked on this my mind was most on a caregiver who gave up her own life to take care of her child full time. She is in her nineties now, and deserves a small, peaceful, manageable space and some help at this time in her life. I wish her well and I’m glad to have had a part in getting her the space she and her son need.

I also told this story because I think persons with disabilities are often unfairly accused of not understanding what a demanding and difficult job caregiving is…for example I think in the debate over assisted suicide, a person with disabilities’ opposition to such laws is unfairly characterized as a person with disabilities not giving caregivers recognition of how hard it is.

I do recognize how hard the work is and appreciate and honor it whenever I can. My opposition to assisted suicide is about me and my own autonomy, and should not be construed as disrespect for caregiving in any way.

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Before breathing isn’t better…

May 19, 2012 at 7:31 AM (Uncategorized) (, , , , , , , )

If you have a vulnerable person in your life…listen to them when you can…and if they feel hopeless, you’d better be digging for some rather than buying into that yourself…

Here’s what it’s about.

I hope he’ll forgive me…but I feel the  need to expand on this excellent blog post of Steven Drake’s at Not Dead Yet, highlighting an article on the Duty to Die crowd’s decision to assist someone in Minnesota in ending their life in 2007.

I’ve not been to an ADAPT event, but I always watch what they do with great interest.  For those of us who have issues that keep us homebound much more often, even than others with disabilities…ADAPT stands in, for any of us who cannot leave where we live, whether it’s in an institution, or a medical issue that keeps us inside.  An ADAPT activist speaks directly to the danger of assisted suicide to people with disabilities.

Gordie Haug hits the key points:

“‘I oppose any policies and practices that threaten the lives of persons with disabilities,” Haug said, adding that he works with many disabled people suffering from depression.’

Haug said there are treatments and options to ease pain and effectively treat depression, but with Medicaid cuts and tight budgets, Haug worried people may decide it is cheaper to take a life than to preserve one.”

It’s so important for ADAPT, and more broadly PWD’s to have a voice in this, and to put the arguments out there in a secular framework…because those who fear extreme religion, who otherwise might be our allies in this…would be turned off by the religious arguments against suicide, would see our very real three dimensional present concerns about this as diluted if couched in religious terms. And I say this as a person of faith, whose faith plays a large role in my day to day. I live in a country, not in a church, and if I want my country to protect my right to continue to breathe I must speak to power in the language of the country, not the sanctuary.


The absolute need for a support system, people checking in on the person with disabilities becomes clear, because: When someone is driven to decide to want to end their own life, it is vital that an outside eye be there to ask the critical questions:

“Do you feel (or have you actually been told by a medical pro) that there is no medicine, no treatment available to ameliorate your physical pain?

“Do you also feel that there is no help, theraputic or medical,for the emotional downturn you’re in?”

Because the answer to these questions is often, yes, they believe that, but: those are their feelings, their perceptions. Factually,
*there may be help available* that they can’t see because of their depression…help for both should be clearly listed, available and a path to access to treatment searched for…by family and friends, if there is no professional support such as a social worker knowledgeable about options.

And, most of these “Final Exit” people are able-bodied…are they not?

I don’t pretend to speak to the unspeakable, the patient who has had an infection migrate to the part of the brain that can turn a pain signal off and deactivate it, or, patients who in the midst of ostensibly good medical care scream in pain for three days straight and morphine, etc are completely ineffective.

I’m speaking for those persons with terminal or debilitating chronic conditions with incredibly severe pain, for whom there *is* an answer, and for whom that answer is never presented.

I think Final Exit people once saw someone in severe, terrible pain, and fell into the default able bodied argument. “I could never live with/like that.”
Yes, but that’s *their* belief. *their* idea…from a perspective, perhaps of never having been through it…
They themselves aren’t in pain yet. How in the **** do they know how they would react, and why do they think imposing their perception on a vulnerable person is compassionate?


We cost money. HUD, (housing), Social Security, Medicare, Medicaid.
We commit the cardinal sin of costing the country money merely by existing. I’m committing that particular sin right now. I’ll admit it troubles me. I have a great deal of internalized shame that I’m unable to work. If any Duty to Die advocate, medical professional, hospital bean counter…lets the motivation to save money be *any part* of the mix of deciding to help someone end their own life…

That devalues any lives but the most productive and healthy right on down to disposable…their inherent addition to the planet just by being here dismissed.

it is my belief that assisted suicide should never have become law.
never been enshrined by lawmakers with force and precedent…as it did in Oregon. Because the dangers of seeing us through a balance sheet or not seeing the help for physical and mental causes of the wish to end one’s own life are out there right now, and they have more power because there is a law somewhere that allows it.

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Should persons with disabilities live? This article nails it…

June 14, 2011 at 10:39 AM (Duty to Die Movement) (, , , , , , , )

Jack Kevorkian has left the planet.   I’ll say no more, on the grounds of  “if you can’t say something nice, don’t say anything at all.’

Maybe the Duty to Die advocates will be quieter now.

Via Stephen Drake and “Not Dead Yet.”

‘Even though the article is from 1993, it’s even more relevant now,as the “pull yourself up by your own bootstraps,” ideology is even more in evidence.

My favorite quote from this?

If people with disabilities know that they can rely on someone to get them out of bed in the morning, maybe more of us would find a productive reason to do so.

If we can be either conventionally “productive,” by working, or add something to our society by our talents, or by volunteering…um breaking news:  We still have to be here to do it.  With correct caregiving the productivity of persons with disabilities, working or not, would skyrocket, and at the same time the cost of the caregiving would have some offset because less medical expense would accrue, since you’re less likely to suffer from depression, and less likely to have medical issues  or accidents that cause further injury with proper care.

Not to mention the fact that nursing home care costs as much as twice what home care does.  (and yes, I’ll keep harping on this til the Tea Party, the Republicans, the Democrats,  and all the other smaller divisions in  all fifty states cop to the fact that this would save them a ****load of money without cutting benefits, and pass legislation modeled on community choice.)

Instead of having the worries and fears over being abandoned and getting sicker, over finances, over relatives that *want* us to do this… drive us to consider assisted suicide, we’d be considering our lives, and what’s up tomorrow.

As Not Dead Yet and other advocates for persons with disabilites to, ( oh, I don’t know, keep breathing?) often say:

Consideration of assisted suicide cannot be framed as  irrational for able-bodied people, but at the same time rational for persons with disabilities or our elders.

That is a falsehood with dire implications.

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