Monday, February 05, 2018

Hospice

My mom was released from the hospital on Thursday, February 1st. She had been in there for a full week. In that time she was diagnosed with the flu, pleural effusion and another UTI. My sister visited with her everyday and sat at her side for hours. She was acting out in ways that were so troubling, she required 24/7 care at her bedside to keep her from pulling out her IVs, etc. During that long stay, it was finally determined by many doctors that she should be on hospice care when she returned to the memory care facility. And that is what happened.

On the morning after her return she was up for breakfast and then spent hours in the office of the care manager, just hanging out and enjoying ambiance of office work space. It must be a wonderful reminder of her 40 years managing doctors offices. Look at her after the brutal week she had.
Is she not spectacularly amazing, this 92 year old woman with lymphoma, pleural effusion, a pacemaker, and Alzheimer's? I look at this photo and I think, "no way this dynamic person is ready to be on hospice care." And yet, she is. While she is sitting there the pleural space between her lungs and chest cavity is probably filling with fluid. It will continue to do that. She may go off hospice for one day next week to have a drainage tube inserted which hospice would monitor afterward. It's comfort care and not life-prolonging. We're waiting to see how that will work out for her. She does have some issues with tubes and it could be pretty damaging for her to fuss with it and try to tear it out.

While she was in the care manager's office, my twin brother emailed a photo of himself in his backyard. He wanted my mom to see the beautiful garden space he has been creating back there since his retirement. She loved looking at the photo. She said, "Oh Michael, he's so handsome."

It is a heartbreaking time for our family for so many reasons. But we all agree on this one thing, that this beautiful, vital, and cared-for woman will be loved all the way to the end and then ... and then... evermore.

Thank you all for your kind good words, loving energy sent from afar, and all the shared stories. We are all of this big human family, connected by our hearts.

38 comments:

  1. Wishing for only the best for your mom.

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  2. She’s beautiful. And loved. Sending all good thoughts to your family.

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    1. 37paddington-- I thought of you when I posted the photos. It's all about love.

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  3. She looks wonderful, and full of courage.

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    1. isabelita-- She does look so wonderful. She has no idea what is going on. Sigh.

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  4. It looks like she is handling her situations with grace. It isn't easy getting old at any rate and with her situation, even less so. A lot of us wouldn't like tubes though ;)

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    1. Rain-- The Alzheimer's actually keeps her from understanding her present situation. She is getting old with continuing grace and beauty, although she did have some alarming un-graceful moments at the hospital. The family is split about more tubes.

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  5. Hospice does a great job with quality of life care. I am so very sorry she is there, but if that is where they have determined she must be, she could be in no better place.

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    1. Colette-- I feel such a sense of relief knowing that my mom is on hospice care now. A nurse will come; caregivers will come. She will have more support than she's had, and so much love to get her through.

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  6. I've seen Hospice do so much, and as the patients and family wanted it done only! They are experts at care at end of life, and after all, we'll all be there one day. Much warmth and laughter is sent to you and your Mom.

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    1. Barbara-- We are greatly relieved that my mom is on hospice care. It is time now for her body to do what it will do... with loving support. We understand that it could be months, but she will have the support she needs.

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  7. Oh, this must be such a hard time. I'm so sorry you're going through it all, and yet, your mom DOES look so vital and energetic and positive. So at least there's that! At least she is in a good place and can be with the people who love her.

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    1. Steve-- It is such a hard time, made even more complicated by family issues. It is amazing though to see how my mom looks, so when I feel really shitty I look at these photos and smile at her strength.

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  8. It is hard to imagine from her pictures that there is a thing wrong with your Mom. She looks great for having so many issues. Those who chose to work in Hospice are a special breed of person. They make caring and kindness seem effortless. I am so glad she is getting such constant, compassionate care along with the support of her loving family. Hugs and good thoughts for you all.

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    1. Patti-- That's exactly what I think when I look at these photos. She looks GREAT! She's an amazing role model for standing up after every time she's been knocked down. A true toughy in every way! Thank you for your hugs and good thoughts.

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  9. ((( Robin and everybody ))) What great photos of Bea!

    I know some might have issues with hospice in this kind of situation, but it is really a decision to give her comfort, to be sure this last part is as good and happy as possible. And, her medical issues are pretty serious. No, she does not need to spend the rest of her time fighting tubes. xoxo

    This is, as you suggested, a time when her dementia might actually be protective -- because she can enjoy being in a familiar setting, will not be dreading what's to come.

    Sending so much love. xoxoxoxoxoxo

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    1. kathy a-- There has been some family discussion around this issue of comfort and the tube. I'm such a passive girl, I just tend to roll with the punches. I agree about the dementia, she is comfortably unaware of her health situation, and there is peace in that.

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  10. Robin, she looks glorious. There is this fierce spirit of being herself looking out from these pictures.

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    1. Sabine-- Yes! Glorious. I love that you see that and her fierce spirit. She is one amazingly strong woman.

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  11. She looks fabulous in those photos. I'm hoping for all of you that there are more of these days than the bad ones in the times ahead. What a beautiful woman.

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    1. Sharon-- Yes, we're hoping for more good days than bad, but I have to sadly report that her lungs are already filling. It's amazing that she is so vital and so compromised at the same time.

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  12. There is so much loving and being loved going on here and heartbreak. Your mother is dear to us all. A bright bright spirit. Loved always.

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    1. am-- I love knowing how much my mom is loved here by so many of my dear blogging friends. She loves it too!

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  13. I don't have anything to add to this. I'm glad that (on the surface, at least) you're keeping strong and clear headed about such a wrenching, emotional time.

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    1. paullamb-- The family fighting behind the scenes is truly breaking my heart. The disagreements about how to proceed, where my mom should spend her final days, etc are endless. And yet, the only thing that we all agree on is how much we love our beautiful dying mother.

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  14. Hard to know what to say or do for the best. It is not easy to watch someone deteriorate like that. My mother had a strokeand was taken to hospital, I visted her the next day and she could recognise me an did not wantto oput people to any trouble. I missed the next day aas I was tole they were giving her tests. The day after she had a second stroke that tok what was left of her mind and when I saw her I felt very upset as she just lay there. The doctors were mubling bout moveing her to were she could be taken care of. I turned around and told them go give her the dignity she deserved and let her pass away in peace. She lasted about a week and passed away about 11 one evening fer my youngest son had visted her. Still vexed I never visted her before the second stroke. I can only wish your mother well and hope you endure at this time. My thoughts are with you

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    1. Bill-- Your love for your mother is still so strong. It truly lasts a lifetime. I appreciate your story so much. It's so hard living far from my mother at this end time of her life. We plan trips a month apart. But I always remind myself that my grandmother came to the US from Germany in 1921 and left her family behind (and never saw them again because of the Holocaust (a truly brutal part of our family history)), and my family moved to the west coast from New Jersey leaving that grandmother behind with other family members. We only saw her once a year, until she was gone. We live in such an age of distance, and I have to believe that love knows no space that can't be bridged by our beating hearts.

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  15. Robin - Yes, a very hard time and I understand how intense things can be at this point. My brother and I weren't entirely on the same page at the end -- he sort of left decisions to me as he was so upset -- it was hard. Anyhow, I understand. With regards to a tube to drain the pleural effusion -- my Dad had that kind of thing for the final few days of his life. It helped a lot -- and much as it seems like it is an invasive thing -- if it is like what they did with my dad, it wasn't really very noticeable to him. I could give you more details if you want -- just PM me on FB and I'll explain. I did all my Dad's end of life care, so I dealt with that myself and it was no biggie as far as I was concerned. I think it would have bothered me more to see him distressed by the pressure of fluid under his lungs. Anyhow, yeah, there is just a lot to deal with and a lot of decisions. It's all hard stuff. Much love to all of you. Very glad that you Mom is receiving hospice care now.

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    1. Bev-- Thank you for your stories. I will PM you on FB. I really do want to know more about your dad's tube for pleural effusion. I think my mom may getting that today.

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  16. So, so hard. Sounds like she is under good care. Thanks for sharing the wonderful photos. I liked learning that she managed medical offices and probably felt comfortable in the care manager's office. Continuing to think of you, Roger and your family. Kim in PA

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    1. Kim-- It is so hard and made even more difficult by family dynamics. But I heard a story about my mom yesterday that made my day! My niece arrived at the facility to have dinner with her and found her wheeling a fellow resident down the hall in a wheelchair. Yes, she shouldn't be doing that, but that is so much her inner nature. Always helping out. Thank you for your good thoughts.

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  17. If there is a god, then he plays cruel jokes on his creations.

    I think I have mentioned that we went through this with Leah's father Dan. His decline was hard to watch. It was like there were parts of the old Dan, but a whole lot of the bits between those parts were missing.

    The best I can do is to wish peace for you, your family and your mother.

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    1. Mark-- It is heartbreaking to watch my mother decline like this. I just wish for her some peace as she makes her exit. Thank you for your good wishes.

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  18. beautiful pictures of your mom. Yes, they belie the truth, don't they? This crap she has to deal with, that the family has to deal with, is heartbreaking. The bright spot: you all love her with all your heart.

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    1. Tara-- It is truly heartbreaking. When I look at these photos I see the beautiful vital woman she will always be to me. Yes, love.

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  19. So sad...
    She totally looks like all is well in that photo.
    It is terrible that people have to suffer through these things at the end of their lives.

    Peace to all of you my friend.

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    1. Pat-- It is so sad, made more complicated because we live so far away. Thank you for your peaceful wishes.

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