NOTE: For those interested, Part 1 here: http://www.dailykos.com/...
Part 2 here: http://www.dailykos.com/...
Part 3 here: http://www.dailykos.com/... and
Part 4 here: http://www.dailykos.com/...
As much of a burden as being my mother's full time live in caregiver could be at times, and as much as I worried what the future might bring, I find myself, three and a half weeks beyond her passing, greatly missing the routine of caring for her in my life.
Even a trip to the grocery store is surprisingly painful, as I no longer have to purchase the adult diapers, the various salves, ointments and unguents for various parts of the body, the hearing aid batteries, the supplements, not even the snackpack applesauce I found so helpful in administering her medications, or the cranberry juice I prodded her to drink each morning to try to ward off the UTIs.
Although all these things, all these commodities, were purchased each trip specifically to tend to some particular malady, some tangible way in which my mother's health continued to fail and her quality of life deteriorated, I find no relief in knowing that she is no longer beset by these problems, or that the worst feared scenarios never materialized.
This surprises me. I thought there would be some sense of relief. I suspect it's there, actually, but for the moment at least it is masked by the sense of loss.
With that, some more bullet points based on my experiences and observations. I make no claim that "one size fits all," but offer these in the hope that some useful information can be gleaned.
POAs, DNRs, Living Wills. My parents drew up a living will at least thirty years ago. I'm not sure many people had even heard of them at the time. Its language prohibited "extraordinary measures," a vague term, to be sure, which is why it's all the more important to have a designated power of attorney for healthcare.
The time to take care of this is, of course, well before it is needed. If the people involved wait too long, it can get messy, with courts and lawyers. So my folks gave me POA for healthcare as well. Years later, after my father had passed, someone from our county's department of senior services gave us some nice pre-printed forms for POA for both healthcare and finances, and we filled them out, I took my Mom to her bank, and she signed them in front of a notary who stamped them.
Over the years, every time our mother was admitted to the hospital, we told the admissions nurse that she was DNR: Do Not Resuscitate. Only last Fall, during her penultimate hospitalization, did we learn that the hospital did not actually have a valid DNR on record, and all manner of interventions contrary to her wishes would have been applied.
In my state a valid DNR requires a specific form, on a specific colored paper. You may have to fill out a new one for each facility your loved one goes to, if it is their wish that they not be resuscitated if they go into cardiac arrest. It's worth checking out.
A caregiver's health, and American exceptionalism. Unlike any other industrialized nation, becoming a caregiver in this country often means giving up any sort of health insurance for yourself. Such was my case.
I'd had excellent health insurance from the utility company (or, as I pointed out in an earlier diary, the IBEW made sure I had excellent health insurance,) but I couldn't afford to continue it under COBRA once I'd left.
For a time I purchased short-term health insurance from a company called Assurant, before eventually realizing I was pissing my money away.
Each policy ran for one year only. At that time I would be offered a new policy, and I've little doubt that many people view this as a renewal, but it is not. It is a brand new policy, which means that anything I sought treatment for the previous year became a pre-existing condition, and would not be covered under the new policy.
The deductible was $5,000, at which point Assurant would kick in a whopping 50% of my medical costs. Assuming the company didn't claim that these costs were associated with something I'd sought treatment for the previous year, as I said. Even as "catastrophic insurance" it was worthless, as the policy would likely have ended before the period of medical treatment was completed.
I would later read, in a Newsweek story about the healthcare debate, that Assurant is one of the most notorious and heavily fined companies in the health insurance field.
So I went without coverage. And I lay awake at night wondering what would happen if I felt that "pressure" in my chest that I've heard so many men my age talk about. What would happen if I felt a lump somewhere there shouldn't be? Who would look after my mother should I become too sick to look after her, and unable to afford treatment to regain enough of my health to do so?
I limited my doctor visits to twice a year. With blood work, it was a few hundred bucks out of pocket each time. My pharmacy has a price-matching policy, and I was able to exploit Wal-Mart's four buck list to my advantage.
While health insurance was out of reach, I found that I could afford $250,000 in life insurance, so that if I died before her my mother would at least have some money to help her in her final years. I originally named her as the beneficiary because at that point her primary need was assistance in maintaining her house, but as her health deteriorated and as I learned how Medicaid works, I changed the beneficiary to my local sister, so that the money would be available to assist our mother without jeopardizing her Medicaid eligibility.
Under current law, in my state, I have not been eligible for Medicaid, but it is my understanding that under the health care reform act people in my situation will be eligible. However the change is still a couple of years off.
Nursing homes aren't necessarily what you think they are. The first time our mother went into a nursing home my sisters and I were grief-stricken. Surely this is where old people come to die, we thought. And in many cases, too many cases I'm afraid, that assumption is correct.
But I want people in this community who have elderly loved ones to know that the doors of a nursing home aren't necessarily marked "No Exit." People do leave nursing homes, and it is through the amazing efforts of professional therapists that they are able to do so.
My mother did more "tours" of nursing homes than I can remember. Her stays ranged from two weeks to as much as six weeks. And each time she returned home after regaining perhaps 90% to 95% of the strength she had prior to her hospitalization. I have the physical and occupational therapists to thank for that.
Mom knew that the road home went through those therapy rooms, and every time the therapists said "Do you think you can walk again?" or "Do you think you can do some more of these exercises?" she'd say "I'll try." They loved her; not all their charges were as cooperative.
So, I'm saying nursing homes are great places? No, no I'm not. Even the good ones fall seriously short. The ratio of residents to nurses can be 30 to 1, or more. The nurses, often LPNs and not RNs, spend most of their time dispensing medication. They finish with their morning meds and it's time to start dispensing the lunchtime meds and then the dinner time meds. Then it's time to start with the bedtime meds.
In between they attempt to serve as the communication link between you and your loved one and the doctor that has been assigned to them. In my experiences with these nurses I've found there are many more good ones than bad ones, and in general they appreciate an involved family member.
It is the nurse's aides who do the heavy lifting, both literally and figuratively. They are mostly foreign born, and their wages are so poor that they regularly work double shifts, putting in sixteen hour days, to try to make a living. Some of them just don't give a crap. And some of them are the closest thing to angels walking the Earth that you're ever going to find.
The federal government maintains a database of nursing homes and their ratings here: http://www.medicare.gov/... .
I will tell you that following her final hospitalization my mother stayed at a nursing home that the government rates four stars, and it was nowhere near as good as the one she normally stayed at (very inconveniently located, unfortunately,) that is rated three stars.
That three star facility, in turn, was much better than another facility owned by the same company that is also rated three stars.
Ask about the doctor/patient ratio! That second three-star facility I mentioned? The one where I saw a nurse almost give an insulin injection to the wrong person? The one where an aide almost gave my non-diabetic mother an Accu-check, thinking she was the woman with the same first name who had been discharged from the room's other bed two days before? It had one doctor for a couple hundred residents.
He was a good doctor, a gerontologist. We took our Mom there specifically because he was already her doctor. But in a two week stay, he'd stick his head in her room once. He spread himself too thin.
After one of her hospitalizations my Mom needed to go for some rehab, and this place, her usual place, was full-up. We wound up sending her to another facility, owned by the same company, but they had eight doctors under contract, or about one for every twenty residents. Her doctor there saw her twice a week, and never objected to me speaking to him about my concerns in between visits. We wound up liking him so much that we switched to him as my Mom's primary physician.
Your job doesn't get easier when they're in a nursing home. Quite the contrary. I found my workload increased when my Mom was getting rehab. She needed an advocate, just as she did when she was hospitalized.
Is the rehab stay even covered? Medicare will not reimburse for nursing home care unless the individual has spent three midnights as an admitted patient in a hospital.
My mother's Medicare Advantage plan waived this requirement. But many doctors, even ones who regularly treat elderly patients, are unaware of this very important and very basic fact. After all, I don't think they got into medicine because they were eager to deal with insurance requirements, either public or private.
If I live to be a thousand I doubt I'll ever understand how somebody could be occupying a hospital bed, be tended to by nurses and nurses' aides, and yet not be considered to have been admitted to said hospital. But very often they will not be considered to have been admitted, but rather to be there for "observation." Medicare will not reimburse at anywhere near the level it would for an admittance, and it can result in having to pay entirely out of pocket for any post-hospitalization rehab stay. My mother was brought in for observation several times, but in each case, by the time she was discharged the admitting physician had changed her status to "admitted," and made it effective retroactively. This is the sort of thing you have to be vigilant about.
With friends like these... I discovered that, as a caregiver, people - well meaning people, every one - will offer you advice. Of course that's partly what I'm attempting to do here, but I found that if they've never gone through something similar, the odds are the advice will be crap, and often serve to cause you more pain. My local sister had to deal with this much more than I did, as she was still working 20 hours a week, interacting with people, still seeing her friends on occasion.
For a couple of years, my Mom's hospitalizations were almost always for urinary tract infections. Three or four days of IV antibiotics (oral ones never did the trick, unfortunately,) and she'd be revived. Often she had to go for rehab before returning home, but sometimes maintained enough strength that rehab wasn't necessary.
But it wouldn't be too long before she'd be back in the hospital with another UTI. It felt like a revolving door, to be sure, and was hard on everyone involved. But in between infections our Mom was great. She ate well, enjoyed living in her own home, reading, watching the wildlife in the back yard.
One day a long time friend of my local sister said to her "Why don't you just withhold the antibiotic from her?" My sister was shocked. An IV needle in the arm is not, we felt quite strongly, "extraordinary measures." We knew that some day the antibiotics might not work, and the infection would ravage her body. But we weren't going to stop employing such a simple and effective treatment just because we were weary of its repetitiveness.
"Why don't you just put her in hospice?" others would ask. "She hasn't been diagnosed with anything terminal," we'd reply. "But they'll keep her out of pain in hospice," they'd say. "But she's not in pain now," we'd say.
Please don't misunderstand me here. There is, without question, a time for hospice, and it is a wonderful program and is, I believe, reimbursed by Medicare 100%. I can't swear by that figure, as we never had to take that step. I am by no means criticizing hospice, nor those who have made that heart-wrenching decision to place a loved one into it. I was always grateful knowing it was there, if needed. I merely offer this as an illustration of the sort of well meaning but ill informed advice a caregiver can expect to receive.
Home healthcare is one of Medicare's greatest benefits. For some time Medicare has been paying for post hospitalization and post rehab facility home nursing care. Home physical and occupational therapy is also available, as well as visits from a home health aide to help with bathing. My mother's Medicare Advantage plan would not pay for a home health aide. I suppose they had to make up for the additional benefits they offered with one hand by taking away with the other.
The patient deductible for this service is zero. And it is expensive, but I have to assume Medicare has determined that it lessens the frequency of re-hospitalization, which is far more expensive still.
The nurses and therapists come to the house anywhere from one to several times a week and do so for a number of weeks. The length of service varies and requires that they can report progress being made. By and large the people who work for these agencies are wonderful. We had a few fill-ins come who were subcontracted out when the agency was booked who weren't particularly great, but that only happened occasionally.
When my mother would ask me in the morning "Is anybody coming today?" and I could say "Yes, the nurse is coming," she'd ask "The nice nurse?" and I'd say "Yes, the nice nurse." They were all nice, and they knew their stuff.
Well, that's enough for now. Thanks for reading. Please don't hesitate to correct any misinformation I may have given here, as well as sharing your own personal experiences and observations. Once again, I welcome input from the doctors in this community.