National Caregivers Month

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November is National Caregiver Month! So I am going to talk about caregivers, because the focus is always on the patient, and caregivers are our “unsung heroes”

But first, I ask everybody to keep David Deutsch and Roberto Rosado in your prayers

David was the recipient of an award at this year’s Wings Over Wall Street fundraiser. He was a teacher at Northport High School before ALS. He is in Stony Brook University Hospital with acute pancreatitis.

Roberto has become a good friend, and a big inspiration to me. If you watched the Jerry Lewis MDA Telethon last year, you might have caught Roberto and his two sisters profiled. Roberto was a recipient of an award at Wings a few years ago. He is in Lenox Hill Hospital.

Three women who were also great comforts to me online, have passed on. Edith, RuthAnn, and Cookie were on my “Living with ALS” yahoo group. In some of my darkest moments, their love came through in powerful emails. I am especially sad about Cookie, whom I had the pleasure to meet in person in DC. I am still in shock over her death because when I saw her in May she had traveled with a friend, and was managing with minimal help. A month later, she wrote to me, excited about the wheelchair van her husband bought for her. She was driving herself! And in July she took a cruise. She was full of life and in DC in May, she was talking perfectly!

It is always very difficult for me when another ALS patient dies, but even harder to take when someone dies who was diagnosed the same time as I was, or later. Both Cookie and RuthAnn lived with ALS about as long as I have. But the end can come suddenly, with an infection or, more commonly, with pneumonia. Of course this is true for anybody. So I am reminded all the time how we have to cherish each day, and appreciate the people we lovem because we can lose them in a minute.

Back to caregivers

Giving care to me, and other ALS patients, seems the ultimate in thankless work. Even though I have paid caregivers, the pay is pitiful. I bought each of my caregivers some nice bodywash to commemorate National Caregivers Month, because it was all I could afford. But I wish I could do more. My caregivers do everything for me, right down to the most personal tasks. It can’t possibly be gratifying, either monetarily or spiritually. And especially since I became unable to get in my bathroom to shower or toilet, and can’t even get into my kitchen to get a snack, they have had to work extra hard. I am lucky because I was able to qualify for Medicaid, which covers aides 24/7. I made up my mind at the beginning that I didn’t want to burden family, who have their own lives to manage. I have always been so independent. Few people know what a huge burden it is to care for an ALS patient. I also didn’t want to go to a nursing home until I absolutely had to. So I did what was necessary to qualify for this coverage. When I look at exhausted caregivers at my support groups, I am happy I went this route.

And, by the way, my discussion here does not only apply to ALS. Many of us will be faced with the care of an elderly parent some day. Many people are already in that position.

Not everybody qualifies for, or wants to do the “spend-down” to qualify for Medicaid. Medicare does not provide for round-the-clock home care, and most private insurance does not, either. And, a fact I just recently learned – long-term care insurance, which is very expensive, will not cover certain illnesses. I met a man recently who paid through the nose for this insurance while he was young and healthy. When he was diagnosed with ALS, he went to activate his benefit, only to find out his policy didn’t cover neurological diseases! If the patient doesn’t qualify for Medicaid, the burden of care falls on a spouse, parent, child, significant other, or close friend. Medicare will only pay for home care if the patient is also receiving a skilled service, such as physical therapy, occupational therapy, or wound care. Those skilled services are usually only for a limited period of a few weeks, and the home aide is usually only authorized for 2-4 hours a day, 2-5 days a week. The exception is hospice aka palliative care for which the patient must be expected to only have six months or less, to live. Hospice will provide home care for 6 hours a day, as well as visits from a doctor, a nurse, a social worker, and a member of the appropriate clergy. The only caveat here: hospice will not pay for equipment such as wheelchair, ventilators, or cough-assist. So the patient has to make sure s/he has all that before getting hospice services.

More often than not, the burden of care falls on the family, I have seen some arrangements whereby a close friend is a caregiver, but this is rare. There is also something called a “share the care” group, in which a team can be formed to split up the care of a patient. This is rare too, and only works if the patient has a very large social network, or belongs to a tight-knit religious community. Family caregivers really suffer. I see spouses of PALS who can’t even go for a salon appointment or just for a relaxing walk or social event, because they cannot leave the patient, I have a friend in New Jersey whose husband is a severely-disabled stroke survivor, and whose parents are both ill. In order for her to go to help out her parents, she has to dress her husband and load him in her van to take him with her. She can’t leave him in the house alone. There is a married couple in my support group – P. and S. P.’s ALS has affected his upper body and he has no use of his hands. Luckily, S. can speak, so he has a program on his computer called “Dragon Naturally Speaking”. This is a voice-to-text program, so he speaks and the computer types. It is the reverse of my Mercury, which speaks what I type. But S. can’t wipe his nose or feed himself. So P. doesn’t want to leave him alone. Lately she has hired an aide out-of-pocket to be with S., and she can finally get out for a few hours a day for “me” time.

“Respite care” or relief of the caregiver is extremely important. One of the nicest things you can do for a caregiver, is to offer to sit with the patient for a while, so that the caregiver can relax. If the caregiver is exhausted, sick, angry, or resentful, s/he is no good to the patient, If the burden of care falls on one member of the family, as it usually does, the other family members, or friends, should provide respite care to relieve the caregiver whenever possible.

And lastly, let me say that “care” is not only personal care of a patient. Beyond bathing, dressing, toileting, and cooking, there are other ways to “care” for a patient. Depending on the abilities of the patient, you can take him/her out for coffee, bring a DVD to watch together, read to him/her, or just sit and talk over a cup of tea. So many people freeze up when a friend or family member gets sick. “I don’t know what to do/say”, they think, especially when the disease is devastating. But little things go a long way. And, when that patient has an unpaid caregiver, a visit can mean the world to that family member or friend who finally has the chance to have some “me” time. If you know someone who is taking care of a loved one, do what you can to brighten their day. If you can offer to visit with the patient for a couple of hours, this would not only give the patient some pleasure, but would give respite to the caregiver. Or maybe offer to do some housework, bring a meal, or watch any young children that may be in the house. Caregivers need care too.