Hospice

Been working on piecing a mid-sized Village Quilt in between calls from my sister’s hospice team, her friends, and the nursing home where she now resides. A whirlwind. Way too much to relate. Nobody knows how long she has, and a recent rally confuses things, but she can no longer be alone.

It’s been pretty day by day here. Someday I’ll write publicly about more of this. How to describe it all? Eleven February trips to Salem, now with meds and my mouth guard on board. Just in case.

Last week after the determination was made that she could not be alone, I spent a horrible night on her floor. Not a clean sheet or blanket in the place on account of her incontinence. The smell of urine distracting. Her insistence that the TV stay on all night, not to be argued with.

K was in Moscow and arrangements had to be cobbled together for the dog. More stress. (Finn seems to have survived his first night alone in the house by hiring the dog walker for an extra walk at 8 pm.)

Fifteen firefighters assisted my sister in three days — five on Sunday to help her up from a fall; five on Tuesday morning to get her into her new hospital bed; five on Wednesday to get her onto a gurney to take her to a nursing home.

I knew I could never spend another night like that one. By then it was clear that she needed more that 24/7 care because there would be many moments in a day requiring three or four people. In the end, that made the decision easy.

On that awful night, she demanded to get out of bed at two a.m. Really argued. Picture me standing at the bedside, worried that someone who weighs almost three times what I weigh would shove herself forward and take us both out.

Highest of praise for the hospice team! They had a bed for her at a facility within 12 hours.

The hospice team is amazing. They’re skilled caregivers who are trained to address the needs of the whole family. After nine years of being rendered invisible in the face of my sister’s need and pathology, it’s disorienting. “Wait, what? You’re asking how I’m doing?” One of many signs that shows how difficult it all has been.

My sister says she is not scared. Believes that there are way worse things here on earth than could ever be in hell. Any anyway, she believes everyone goes to heaven. Never mind the inconsistencies — she has some kind of faith and that’s a good thing.

Today, she talked about rehab and wanted to know if I’d given all her things away already?

A process.

Her cat is here. Poor thing hides under C’s bed or in the laundry closet. The dog wants to kill her and would, given half a chance. No joke. But, one thing at a time. And anyway, it doesn’t feel right to give the little tuxedo away while my sister still lives.

Meanwhile, the news is a tempest.

Tomorrow my standing writing date will be a TV viewing date instead. Michael Cohen. I’ve made cookies.

39 thoughts on “Hospice

  1. Michelle Slater

    I feel it all calmly–because of the clarity and brevity of ‘what’ you choose to tell and ‘how’ you tell it–no easy task to convey horror and sadness without a hint of exploitation. You do amaze me in this respect and in respect to the fact of your caring, of continuing to rouse the courage to care for all those real details this situation presents. Glad to hear about the professional helpers too. Of course they asked about you. Have a fine couch cookie session with the hearings. I’ll wait for the captioned results.

    Reply
    1. deemallon Post author

      Thanks Michelle. The business of being public with such intimate details is inherently problematic. I’m glad to get your feedback on that. Only an hour and a half til snow time! It is so freaking cold here this morning that I think lentil soup might be required, too!

      Reply
      1. Michelle Slater

        Reasonable here so long as the valiant Super keeps our systems working…cold is predicted for the next ten days with sporadic snow but not much–I’m convinced that snow falling on Manhattan gets close to the tallest new ‘pencil-tower/sky-stealers’ and realizes the heat from all this dense humanity and electricity everywhere will melt it, so it melts before it lands and we get rain. Hey, perhaps Manhattan forecasters should stop predicting snow all together, but then all the other boroughs, jersey, long Island and upstate do still get snow so, not yet.

        On face book yesterday, I posted my take on the first day of hearings and said I could hardly wait to see your blog post opinion. I’m too early for it…my usual predawn wake up is the time to read blogs. Back to bed now at 6:45 a.m. before the hordes commence Wednesday (also known as Day 2.). I’m planning on making a sausage, beef broth soup to ladle over buttered toast.

        Reply
        1. deemallon Post author

          Delayed response here. Been beyond responding about Cohen. But Maddow asked the pertinent question: aren’t we HERE now? Here where someone has to take action?

  2. Hazel

    Dear Dee, the not-knowing & every day being a new story is hard, glad you have some ease in the responsibility for her care now. Keep finding ways to tend yourself- body & spirit (humor and cookies are very good things). Thoughts & love to you.

    Reply
    1. deemallon Post author

      Thank you for the reminder about self care. When I found myself unable to even think about feeding the cat without crying, I knew I needed a hot bath and K’s help. He helps a lot, by the way. There will be so much more to do once she goes, too, of course.

      Reply
  3. fabricwoman

    The hearing should be a dandy. Hope Cohen spills the beans far and wide, if only to peel off a few of Trump’s die-hard supporters. Enjoy being home with Finn and your sister’s cat; the poor animal is going through a lot right now itself. Cats don’t adjust well to big changes in their nine lives. Be well…

    Reply
    1. deemallon Post author

      I read his 20 page opening statement last night before sleep and was a tad disappointed. I hope the representatives’ questions elicit more vivid and damning details.

      Reply
  4. Anonymous

    I so wish I could better communicate my thoughts after reading this post and all the heartfelt comments from this cyber circle. Knowing that you have much support here and there I hope is enough to get you through this most emotionally difficult sad time.

    Reply
    1. deemallon Post author

      Thank you so much Tina. Don’t know what I’d do without that support. And I don’t know why the anonymous thing is happening. Maybe it’s something I can fix.

      Reply
  5. Anonymous

    In the midst of all that you have been dealing with Dee and continue to deal with, you find the time to give us a gift. Your strength, honesty and way of telling and sharing with all of us, what is an incredibly difficult situation, goes right to the heart. You need to know that writing about your experiences, the whole of them, is such a wise way of facing all of this and I am in awe of how you meet each day and can share how it truly is. Your spirit is strong as is your compassion and do not doubt either. It is so important to be good to yourself, to seek comfort where you can find it and your plan for the day, cookies, lentil soup and Cohen is just right.

    Reply
    1. deemallon Post author

      Hi Marti. Helpful words as usual. Insight must be your middle name. Doubt is a real problem for me so I may come back to you on that.

      Reply
  6. Joanne

    When I read your words-it takes me back to my father’s death. When the time comes, and your sister is close to the end–talk to her of shared good memories. It did more for me than my dad. Listening to the Republican speeches at the hearing. Nothing of interested yet. I am planning on a chocolate mug cake if they ever take a lunch break.

    Reply
  7. grace Maestas

    it’s me, Dee, grace who will most likely be another anon, . It all takes it’s own time. With both Alz B and the Old Cowboy, Hospice, the just going of it all. We wonder, how LONG can all this go on?????? And then….quite suddenly, it’s Over. And you stand there. in the Over
    Space. and it’s History. and then, Memory. Your writer’s sensibility will carry you through, even tho all of the even Thoughs. I send good and steady Vibes. You, her, her care givers there, your man, your dog, her cat. Life is something. A life Over is something. All we can do sometimes is just stare at it.
    Love to you

    Reply
    1. deemallon Post author

      I remember you talking about Old Cowboy’s final weeks. The wondering is tough, but how much tougher it must be for her, waiting. It is all just so sad. The way you describe Over is compelling. Helps me wrap my mind around the Now.

      Reply
  8. Liz A

    Reading this I thought back to years that I can scarce believe I go through … likewise, your telling here honors how very much you are doing (and have already done for years past)

    May you find comfort as you piece together cloth and life …

    (and durn it, SDNY better hurry up to let us know what all they’re up to … the Cohen hearing was no more than a tease)

    Reply
    1. deemallon Post author

      Thanks Liz. SDNY and Mueller. I feel such a sense of urgency about getting Kushner away from state secrets. Can’t they indict him someone indict him?!

      Reply
  9. ravenandsparrow

    This post burrows so immediately into all the leaving-life sequences I have ever been part of. The strain of it can be almost unbearable, except that you bear it because what else can you do?
    The indeterminate timing, the wavering between the wish to be free of the angst and the realization that the loss will be permanent, the memories that leap unbidden into your consciousness….all of the weight and sorrow of love. I am thinking of you and sending blessings to your sister as she approaches her great transition. Much love to you both.

    Reply
    1. deemallon Post author

      As usual, Dana, you articulate things so well. And it helps to read it there, what has felt indescribable. “The weight and sorrow of love,” indeed.

      Reply
  10. Forever Fermenting

    Hospice the angels, lost a friend this last week. Sure felt a tad of hope with those inquiring answers in trial, those not asking. Shame on them. Hold on through these hard days, if only it was easier. 💟

    Reply
    1. deemallon Post author

      Sorry for your loss.

      As for the GOP’s complete lack of interest in substance, their complete abdication of oversight. Well. They’ve truly and obviously gone straight down the tubes. And for what? They don’t even know what trump is hiding. Truly incredible.

      Reply
      1. deemallon Post author

        Thanks. I’ll look for them. It’s hard to know if we’re “there” yet or not. But it wouldn’t hurt to get some wisdom in advance.

        Reply
        1. Nancy

          Yes, the Final Journeys especially gives great nuts and bolts suggestions of how to handle a loved ones passing. And Final Gifts would have helped me (us) know that when my mom asked for her “staff, YOU KNOW LIKE A WALKING STICK!” that there wasn’t really one to be found in her office as she had directed! The humanity and insight of this book was profound.

    1. deemallon Post author

      Thanks, Nancy. I hope the overwhelm of moving has eased and that the pieces are falling into place.

      Reply

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