Friday, November 23, 2007

Reality Check!

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Reality check!!!! The estimates for this remodeling are coming in at about $6500.00, which is a good $5500 more than I have put aside. One look at my finances revealed that I can’t spend any more money that I don’t have; my monthly charges are higher than they should be already. I have to explore ways to raise funds, and this is all stressing me out, as if ALS wasm’t stress enough. I’ve cancelled Netflix and I just cancelled my audible.com membership. I am trying to figure out what other corners I can cut. I am going to resign from NYC Metblogging this morning, because it is getting harder and harder to write about the city when I can hardly get out anymore. And if I am feeling overwhelmed, I fully empathize with the people out there who have jobs, children, etc. I am totally understanding why people just can’t come around anymore.

My eBay stuff isn’t selling as well as I thought it would. My energy level is going down, down, down. And two of my aides in particular are burning out; and even if they admitted they’ve had enough and want to leave, it would be too difficult to orientate a new person or two. It is I who have to do the training, since there is nobody who is here often enough to know the daily routine. And that is exhausting for me, especially since I can’t speak. Everybody is sick of emptying the portable commode and giving sponge baths. And I still have not found a good way to wash my hair. The dry shampoos and “no rinse” shampoo caps make my hair look like straw. And the local salons want from $30-$40 for a shampoo and blow-dry (nobody just does a shampoo). Inquiries at several local salons showed me that the $32 I paid for the shampoo/blow-dry last month was in the ballpark.

So I don’t see life getting better for a while, if at all. And by “better life”, I mean the luxury of a shower and shampoo!! As much as the aides wash me down well, I never feel really clean. I have been researching government grants, but have come up with nothing. I thought I had something last week through United Cerebral Palsy, but found out it doesn’t apply to Queens. I feel so drained and hopeless.

I went to Haley’s house for Thanksgiving. It was so good to see the family again. But I found myself very emotional when it was time to leave. I could not bring my bi-pap because it was too much for Ellita to carry with maneuvering the manual wheelchair. My dad is still struggling with colitis and the bladder cancer. I should be helping HIM out. I should be doing “aunt” things with the kids. I should not be the one who has to be cared for. I think that was the reason for the tears.

Wednesday, November 14, 2007

RIP Roberto, You're So Vain (You Probably Think This Blog Is About You)


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We lost Roberto this morning. He had been intubated and it was time to remove the tube, so he chose not to go on mechanical ventilation. The choice of whether or not to have a tracheotomy and live with mechanical ventilation is the decision ALS patients all have to make well before it becomes an emergency issue. I will really miss Roberto. He and his sisters were a big comfort to me. His sister Rachel was his main caregiver until a few months ago when he got home care through hospice. Rachel and Roberto’s other sister Ivette regularly attended both of my monthly support groups. I hope I still get to see them. I am waiting to find out when and where the wake/funeral is.

I had a contractor here yesterday. I liked him and I was excited about having him do the work. But this morning he emailed me, and I realized that he wasn’t planning to take down the wall going into the bathroom, and I need that down so I can get on the other side of the pipe to reach the toilet, and so I can have better access to the refrigerator. Suddenly I’m frustrated again. The contractor who was supposed to call me on Monday, finally called tonight. He’s coming Saturday for an estimate. When it rains, it pours. I just can’t wait to get a little dignity back, with a shower, a shampoo, and even a little food prep. Basic stuff.

I am just so tired of getting emails where people judge me because I write about the emotions that go with this disease. Just because I mourn the things I have lost, it doesn’t mean that I don’t appreciate what I have. When I say that I feel lonely and isolated, it doesn’t mean that everybody needs to send me emails about how they are thinking of me and praying for me. I don’t need to be told that I sound too angry and the anger and frustration may not make for a pleasant read. Nobody twists their arms to read this. They can choose not to. I KNOW there are people worse off than I, children with cancer, people dying. Because I mourn the ability to get in my car and drive, or to talk on the phone, it doesn’t mean that I a not thankful that I can use my hands, for now anyway. I don’t know why everybody thinks I am talking about THEM. “I know you were talking about me in your blog when you said nobody comes to visit. You made me look bad…….etc etc” Feelings are feelings, ALS or no ALS. If I’m angry, I am allowing myself to be angry, disappointed, frustrated. It doesn’t mean I am like that all the time. But sitting here with my aide, TV, and laptop in a studio apartment, where I can’t get into my own bathroom and kitchen doesn’t cheer me up either. Andrea Bryant is coming on Saturday, so I’m looking forward to that.

Anyway, I am totally bummed out about Roberto. But, at the same time, I am blessed to have known him. Evidently, he had a lot of friends, who came to visit him until the end. He was always grateful for that. I’m sure I will meet them all at the funeral.

Sunday, November 11, 2007

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.

Thursday, November 1, 2007

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I am trying to find a contractor for the renovation. If anyone knows a contractor s/he can recommend, send it on. They have to have all NYC licenses. I have the plan drawn out by Antoinette of the ALS Association.

I always get a little melancholy this time of year. I didn’t even put the “Trick or Treaters Welcome” sign on my door and didn’t buy candy. Just couldn’t get into it this year. Some mornings I can’t wait to get out of bed because I have so much to do, and other mornings I think “why bother”. Sometimes I value what little solitude I have, like when the aides go to do the laundry or shopping. And other times, I am agonizingly lonely and count the days to my next support group meeting or my next visit from my Jewish Federation volunteer. Sometimes I can live in the moment, and other times I worry – about whatever holiday is coming and whether I will have to go through it alone, about bills that need to be paid, about the “what ifs”, or sometimes I create something to worry about. Or even worse, I obsess about the “shoulda”, “coulda”, and “woulda”. I am now thoroughly convinced that if I had sold the apartment and moved to an expensive rentals, I would have been consumed by thoughts of “when the money runs out….”. When you own a house, condo or co-op, it’s hard to give up the “owner” mentality and become a renter, especially when the monthly payout of mortgage and maintenance is a lot less than rent, even in this area. It was probably a fantasy I was living out, and I guess I needed to go through it., and get it out of my system.

Twelve years ago, my mom died on October 29, and she was buried on Halloween, which happened to be her favorite holiday. So I get very melancholy this time of year. It always seems like everybody is having a lot more fun than I am. I am finally getting my rubber stamps and other craft supplies that I don’t use for sale on
eBay. I need to get rid of the stuff to make some room, and I also need to raise funds for the renovation.

Every once in a while, I get an unexpected surprise. Two of my former students sent emails. One did a search and found my blog, and the other found me on classmates.com, where I am listed as a faculty member for the
Academy of Environmental Science in Manhattan.