Posts Tagged ‘home care’
Going Home
As hospitals edge even closer to dreaded October, when they will be penalized for thirty-day readmissions, I wonder why we are placing blame in the wrong place.
I know I sound like the overplayed record, which is indeed a sad place to be considering that no one plays LPs anymore (or do they?). But people who leave hospitals without sufficient supports at home will return, quickly, to hospitals for care. It will not surprise me when we see in the first reports on this policy that the hospitals who care for the sickest and the poorest will be those with the highest penalties.
Now, the problem that we continue to ignore is that people (including caregivers themselves) get sick, and people get old, and people at some points in their lives are either glad that they planned for it, or sorry that they did not. But of course, there are always situations when planning is impossible, and chronic poverty would certainly be among them, but accidents happen, as well. And even very good planning can be insufficient for those facing a long-term diagnosis like multiple sclerosis.
Every time I drive past new housing that features the classic staircase leading to a narrow front door, I realize how much our nation is in denial of this issue. I think this particularly in lovely communities without public transportation, or even paratransit. It is really worse than not planning for aging in place, or for sickness in general; in many ways we live in communities that were planned with a vision of independence, privacy, and all the things that seem so desirable, but in the long run often work against our very nature as social beings. No, we have not planned for disability, or for the necessity of frequent hospitalizations, and we continue not to plan for it, not only in terms of health care (including long-term care, but in terms of our entire communities.
In recent months I have met with health care professionals from Denmark and France. When attempting to describe my job, I have been continually amazed at their confusion as I try to describe my role, which involves trying to figure out which slot may work for given people to find funding for services. Both of these western European professionals told me that it is not a question, regardless of income, whether people will receive support (state subsidized support) at home, but that the difficulty comes in coordinating schedules, and actual logistics of carrying out the plans. In other words, there are supports, and enough of them, and people who need them do not have to jump through eligibility hoops of the many variety we have here. What a concept!
But it is interesting also to think that in these imperfect, often inaccessible foreign communities, there must also be some acceptance of multi-age communities, universal design, and death.
This is not to say that there are no choices for in-home supports (or universal design–so much innovation!) in the United States, or that they do not exist. In fact, they do exist, abundantly, for those who can pay for them.
For people who do have supports, who have informal support at home, or can pay for personal care services, I do believe that STAAR or other post-hospitalization counseling programs may well help people avoid hospitalization.
But for those who cannot afford help, who return to isolated upstairs apartments, or to another sick spouse, or to dependent children, we will continue to find them, exhausted and sicker, back in hospital emergency rooms. It is not a matter of inadequate care in hospitals, so much as it is a call for help where we live.
Up All Night
As summer winds down now, I admit to having fallen into the habit of staying up late, and waking up late, as well. Vacation for some, luxury of the absence of alarm clocks, at least ones that go off before 8am… I could get used to this.
But so far, my nighttime wanderings about the house are no reason for concern by anyone who loves me. Right now, I have the fortune of good health, and no one is watching over me to make sure that if I am not resting, I am safe nonetheless. But the same cannot be said for so many families I have seen lately, whose patience and tolerance has been tested by lack of sleep, and lack of a break.
So, we do a lot of talking about a national need for respite for caregivers, but I think back to 2006, when I was speaking about the Lifespan Respite Care Act, and have to ask now, where is it?
Where is the respite care that caregivers of people with chronic illnesses and disabilities so desperately need?
Where, I ask two years into a three-year grant to find statewide answers, is the money? Where are the resources?
I am not making light of the work that many dedicated people have put into answering these questions, but I have to say that a full six years after the Act was passed, I am frustrated at the paltry sums I sometimes can dig up as answers to exhausted families and friends who are doing all they can to provide care at home. But it is not surprising that they reach breaking points, that eventually some people give up.
Caregivers get tired, and stressed, when reminded to “take care of themselves,” when doing so seems like another thing on the list, something else to plan, and re-plan, and often figure out how to fund, often privately–if possible. I know, because I have been there, and been on the receiving end of people like me, who tell me that they wish they knew of a solution for that particular need.
But truth be told, simply having the day-to-day help for the people we loved would be enough.
Now, actually, when I say, “day-to-day,” I really mean “night-to-night.” This seems to be the one thing that I can hardly ever figure out for people, unless they have the private funding to pay for it. It is not necessarily that individuals always need that elusive 24/7 care that frequently convinces families to depend on nursing home care. But so many people seem to need most of their help at night, when they may be frightened, anxious, or simply cannot sleep. Or maybe they do sleep, and awaken from necessity, may fall–or may not awaken, may not breathe, may wander. The world runs during the day, people may visit, if only to deliver mail or a meal. But at night, in the dark, so much of the world stops, whether our own rhythms tune into this or not.
I am looking for answers here, for respite, for available personal care hours that may not be during the day… I have families who keep asking me for more help, and more and more, I am frustrated not to know what to tell them.
Only Anecdotal 