R.L. SAUNDERS

writer attempting real life in the middle of everybody else's vacation

Short of a cure, hoping for death

on November 9, 2012

Maybe I shouldn’t blog when I’m pissed and sad, but here goes.

Alzheimer’s is worse than death. When I heard people say that before, it made me think they’d never experienced the death of a loved one. But I get it now. My father-in-law, Ben, is in the final stage of the disease.

This week, my husband and mother-in-law, Jeannette, brought him home after two weeks of “respite care” at the local nursing home, where the staff failed to provide even basic care for him. Jeannette asked me not to divulge the most personal lack-of-care issues, but there were many. And if family hadn’t gone in to feed him, he wouldn’t have touched the food trays that were left in his room for him to stare blankly at before they were removed. More than once, he was found in the fetal position on the floor with wounds on his face and body. Did he do it to himself? Who knows.

The only thing they were really, really good at was giving us reports about how violent and difficult he is. Yeah, we know. But silly us, when they agreed to take the thousands and thousands of dollars for the stay, we assumed they knew something about caring for late-stage Alzheimer’s patients. Or at least knew how to give a bed bath. Nobody found any respite, whatsoever, in that experience.

Thankfully, he is home and receiving Hospice care until a spot opens up for him at a VA facility on the mainland. But honestly? I wish Ben the timely, painless, dignified death we all know he’d beg for right now, if he were here.

Ben was a remarkably smart, creative, kind-hearted, and fiercely loyal husband, father, and friend. He lived and breathed for Jeannette and his family. There is no chance for recovery at this point and he has been involved in every experimental program to which Jeannette could get him accepted. To say that she’s done everything possible makes me feel like I’m minimizing her efforts to save his life, but I’m trying to keep this post brief.

Before this, I couldn’t imagine anything much worse than losing my partner to death. But now that I’ve seen my mother-in-law grieve the loss of her husband and work around the clock to maintain his body, all while trying to keep herself safe from things the disease makes his body do, I have a different concept of worst-case scenarios.

I am positive Ben would find a way to end his physical existence if he had any concept of what is happening. And I don’t care how gruesome that sounds. If you’ve been here, you understand.

In the meantime, though, Jeannette doesn’t sit around feeling sorry for herself. In addition to the draining, full-time care of her husband (while dealing with her own increasingly debilitating post-polio syndrome), she helped start a local support group for caregivers. She also worked hard to get a nationally renowned speaker (Pam Powolski) to Key West because she wants our community, especially medical professionals, to be better informed about the realities of working with Alzheimer’s patients.

I think Jeannette is pretty awesome for caring so much about this issue in our community even though it’s really too late for Ben to benefit. The support group meets on the 2nd and 4th Thursdays of the month, 5:00-6:30 p.m. at the Visiting Nurses Association, 1319 William Street, Key West. All dementia/Alzheimer’s caregivers are welcome.

Alzheimer’s disease is the sixth-leading cause of death, affecting 1 in 8 older Americans. It’s the only cause of death in the top ten that still cannot be prevented, cured, or even effectively treated. Please support Alzheimer’s research.
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20 responses to “Short of a cure, hoping for death

  1. Bonnie says:

    Jeannette is my “sister”/aunt and my hero. I pray for her strength every day. She and Ben have been an awesome couple to have on one’s side, fighting the good fight. May she continue to be strong in all of her efforts to give Ben enduring love and dignity in this stage of his life–no doubt he’d do exactly the same for her if the tables were turned. I love you two so much.

    • Jeannette Saunders says:

      Thank you Bonnie/sis. I carry on with the strength you and others give me.. I don’t intend to
      give up.. Ben is my life and like you said, IF tables were turned, he would do the same for me.. 🙂

  2. Rhonda, I am so sorry your family is going through this. I have one grandmother suffering from Alzheimer’s & one suffering from Dementia. It. Is. Awful. My Grandma had a slow decline over the last several years into dementia. My poor Granni was sharp as a TACK up until a few years ago, then it was like a switch flipped off. Both are in care facilities & it pisses me off how patients are neglected as well!! I hope someone is working on a cure. And I truly hope your entire family finds peace soon… xo

    • Thanks, Kelli.There’s lots of research going on. I read about something that was supposed to be measurably effective a couple of years ago, but I don’t think it has been approved yet. But comapred with cancer research, this doesn’t even seem to be on the radar.

  3. thequeenlisa says:

    Rhonda, I am a long-time friend and client of Lori’s. As she knows, I lost my grandmother 2 months ago after a year of losing her slowly, physically and mentally. I felt much the same as you expressed. Wishing she could go, peacefully and with dignity, the way she lived her life. I’ve been there. I understand. My thoughts are with all of you during this terribly difficult time.

  4. Maureen Bramlage says:

    Heartbreaking!

  5. Meg Cauchy says:

    Beautifully said, Rhonda. I learned while losing both my parents that there are worse things than death. Praying that the suffering ends for everyone.

    • Thanks, Meg. Your hubby’s dad died from it but so far none of the kids have it. They say some forms of it skip a generation. I hope we come a long way toward prevention or a cure before it starts showing up in my cousins, siblings, or me.

  6. Sally_Oh says:

    This infuriates me. Not just the seriously negligent care but how are we suddenly all getting Alzheimer’s and dementia? One in two men and one in three women will get cancer in our lifetimes. What have we allowed to happen to our health? (We allowed the government to keep us safe and be in charge of our health. But I’ll stop with that… you’ve heard me rant.) Hal and I have agreed that we will not let the other live like this. (He won’t do it, but I will. At least I won’t know that he didn’t follow through…) Blessings on your family, Rhonda. I’m so terribly sorry.

  7. Sally_Oh says:

    P.S. If you haven’t tried coconut oil, you might give it a go. It has shown to be effective in slowing down the progression. It has to do with ketones.

    • Thanks, Sally. Yes, Jeannette has been using coconut oil for Ben for a couple of years. She felt at first that there was some slight difference. Hard to tell if it somehow slowed the progress, though.

  8. Emily Saso says:

    You communicated this awful reality so powerfully, R.L. So heartbreaking.

  9. dooda day says:

    Rhonda, I appreciate your writing on this insidious, thieving, hateful disease. It takes EVERYTHING away from a person and I believe it is a fate worse than death. I have much empathy and compassion for you and your family and all that your family is going through.

    Mother and all of her five siblings, as well as her Mother and grandmother died of Alzheimers. We think Mother had this disease at least 10 years before she passed. In the early stages, she hid it fairly successfully. Yes, Mother and some of her siblings, who were all kind, funny, sweet, people in their former state, pre-Alzheimers, did later exhibit some aggressive behaviors. There IS effective medication for this to keep the person in a less anxious state. I encourage you to pursue this.

    Also, Mother was in at least three different nursing homes over a period of five years. If and when we found a nursing home was not attending to her needs in a fashion we felt she should be cared for, we did not hesitate to move her to a facility where she was getting excellent care. After all, this type of care is very costly and why shouldn’t our loved one get the best care available. You DO have options, and do not hesitate to file reports on medical care facilities which you suspect may not be giving adequate care, (or causing deliberate harm) to a loved one.

    As you may well know, in the latter stage, the sticky plaque becomes so prevalent in the brain, the patient is in a vegetative state and cannot remember even how to swallow. After Mother was admitted into the hospital from the nursing home for the second time in as many months, with a UTI, wise heads prevailed in the last two months of her life. The doctor came to my family and said, “Your mother will not recover from Alzheimers. Even if she is treated for this present condition, she will not ever get any better. The quality of life is such that we recommend withholding nourishment and water.”

    I will always be grateful to this attending physician for these words. Mother lived amazingly for fourteen days after life-saving measures were discontinued. She was kept comfortable with morphine. Mom was a wonderful person, Mother and wife. She raised seven children and lived a full rich life for 89 years. Mother had so much dignity. She would have been mortified, to think caregivers would one day be changing her diapers or wiping food dribbling down her face. She would NEVER want to EXIST in this state.

    My husband and I have our “Power of Attorney for Health Care”. If I thought I would have my faculties about me enough to end my own life when I become so disabled with Alzheimers, I would not hesitate to do so. Of course, the problem there is, unfortunately, I would probably not be capable of making any decisions regarding my own medical care.

    My heart goes out to you, your Father and Mother-in-law and Bobby. I hope my words here might have helped you in some way. Much love and kind thoughts are sent to you. Diane

  10. (((((Hugs)))))

    I’m so sorry 😦

    Xx

  11. Susan C. says:

    It is heartbreaking. My father takes care of my mother, and I am so worried for him. Even when I visit and try to help, I feel like I’m stressing my father even more because he is out of his routine, and that is all he has to get him through each day. There are still times she is aware enough to know what is happening to her, and that is so hard to watch. I agree, Rhonda. This disease is worse than death.

  12. Rhonda and Bobby, I went through this with both of my parents and I understand. I am sorry that this is happening to your family to which I am related through the Bahama’s connection. Tell all your family that I am praying for you all and I am placing your family,(which is also mine) on my church prayer chain. I love and miss you all.
    Robbie

  13. Cathy Beatty says:

    Our thoughts and prayers are with this entire family.I knew Ben before this disease,and he was a very kind man.I love this family……

  14. Oh wow, Rhonda. I’m really sorry your family is going through this. This is a beautiful piece of writing.

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