On Mother’s Day in a Month of Father’s Days

As some of my recent writings have reflected, my 90 year old father is actively dying, his replaced aortic valve no longer working. One month ago today, we formally enrolled him in hospice care. It has been quite the month. As Dad’s eldest child, I was given responsibility of being his general power of attorney or personal representative. I and my next two older siblings are all medical powers of attorney. I am grateful every day that I did take this responsibility seriously and did what I could to ensure that Dad did everything needed to get his financial and personal “ducks in a row”.

That all that paperwork was done in advance has allowed me to manage his affairs reasonably well, paying bills, signing and filing his taxes, all that good stuff. He and my stepmother have kept their finances separate aside from shared living expenses and joint home ownership. It’s worked for them for 31 years.

This process has been very difficult for my stepmother, J,  as it exacerbates (what I observe to be) her chronic anxiety and fear of being “done wrong”.  One way this has manifested during this time has been her desire to move dad to the care portion of their retirement community. On one level, I understand this. Given that since April 30, I and my siblings have been taking 24 hour shifts to care for Dad in their apartment, I really appreciate the difficulty of caregiving. It’s exhausting for me, doing one day out of 4, and I’m 18 years younger than J. All day, every day, I couldn’t do it either.

However, I have a (big, huge) problem with moving Dad to the care unit (aka nursing home). Number one, Covid-19. Now, their facility has done beautifully, with thus far no residents in assisted living or the nursing home side of things becoming ill with Covid-19. Of course, part of this is due to the units being on strict lockdown. No visitors, except when death is imminent, and then only in full protective gear. And that, while very unfortunate for patients and families, is as it needs to be during this pandemic.

Back to Dad. In the process of diagnosing his failing heart valve, he was admitted to hospital, ruling out Covid-19. I’m a physician, I do understand why this was necessary. However, saying goodbye to him as he was wheeled from the ER to the isolation of the hospital was one of the hardest things I’ve ever done. Going into this, Dad had some dementia. Lack of circulation due to his failing heart made this much worse. Even worse than saying goodbye to Dad was being on the phone with him while he was in hospital. He couldn’t understand or remember why he was there. He did know he was alone except for hospital staff.

Hearing him beg to be “gotten out of here”, or wondering why he had been abandoned was truly heartbreaking. I vowed then that I would do everything I could to prevent that from happening again. So when his wife made plans to transfer him to the care unit, I said no. Again and again. For anyone with dementia, any change is difficult. Moving to a totally unfamiliar setting, without anyone he knows for contact, would be terrible quality of life for Dad. I also know, from a lifetime with my father, that he does not like medical intervention and he basically hates for anyone to tell him what to do. This trait has not diminished over time. He had filled out end of life forms clearly delineating this. He didn’t want to be in the hospital except to treat a clearly treatable and reversible problem, and wanted all care to be in his own home.

I had my instructions.

My stepmother was understandably upset by all of this. Her life is hugely disrupted, her husband is dying, and now his *!&?*  kids want to come into her apartment and take care of him? “What about me? They are trying to kill me by bringing the Covid virus in, too.” Not pretty, to say the least. After a lot of negotiation and literally hours of phone calls, a temporary agreement was reached. One of dad’s 4 children would come in for 3 hours every other morning, giving Dad time with his family and my stepmom some respite and a chance to be out and about. Phew!

We didn’t get all the way through the first rota before J had had enough and chose to move to the guest suite in their complex so that she could get better rest and be spared the intrusion of caregivers in their apartment (its a large 2 bedroom and they’ve each had separate living spaces since they moved in in early 2019). On very short notice, we went to 24/7 caregiving. Things have worked okay since then. We didn’t realize when this started up the level of terror and rumormongering that goes on in a facility of this sort. This became clear when residents expressed terror that they, too would get Covid-19 from Dad’s kids. All of us are well as are all of our household members and have had minimal exposure, especially as I resigned from my volunteer work with the recovery shelter when Dad was in the hospital.

So after yet another massive phone conference Monday, with the facility bigwigs, social workers, hospice, kids and stepmom, we got things further worked out. I think what turned the tide was the hospice nurse (who is well loved and respected and works extensively in their facility) saying that moving Dad anywhere, whether to their care unit or to one of his children’s homes would be detrimental to his health and quality of life.

I last saw Dad yesterday morning. He’s failing fairly quickly now, rapidly losing strength, his breathing patterns are changing, and he’s struggling with the agitation and disorientation that often accompanies this phase of dying. Hospice has been wonderful, and we were able to get some medications that are helping his agitation. He has moments of clarity, and clearly wants his people around him, even as he doesn’t always recognize us in the moment. Reading my name tag (we go through the Accuscreen process each day when we arrive at their complex), he repeated my name and said, oh, she’s my sister.

Not in this lifetime, Dad, but close enough.

Christmas 1970
Family photo, 1970
DADs 90th
Dad’s 90th Birthday Party, January 2020

I am sorry that my stepmother and their living facility has found me and this process so disagreeable, and I am not at all sorry that I am doing exactly what both my parents taught me to do, advocating for what I feel is right. I am truly honored and grateful to have my 3 siblings standing with me at this time. Mom and Dad, thanks for your example.

Addendum:  About 10 hours after I first posted this, Dad passed peacefully in his sleep.

30 thoughts on “On Mother’s Day in a Month of Father’s Days

      1. Oh my. You have my deepest sympathy. I hope it is some comfort to know he was in his own bed, that the end was peaceful, and that you did all you could possibly do for him. You and your family will be in my thoughts and prayers.

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  1. I remember how had it was for Garry to move his mother in a non-plague year to a dementia facility and how the results were awful for her and for her sons. I am grateful every day that we DIDN’T move to a senior facility, even though we often thought we should — or at least I should. You must be running entirely on adrenaline at this point. You’ve been able to keep sanity working for you, though you are probably utterly exhausted.

    I worry that Garry and I are incredibly far from having our ducks in a row. Part of it is Garry’s refusal to deal with it. The other part is my unwillingness to force the issue, with Owen on the side strongly urging us to get him onto the mortgage to give us some protection in case we wind up in long-term care. He’s right. I’m right. Garry is in denial except he really isn’t. The worry is right under his skin.

    I don’t know what to do. We don’t have a lawyer, can’t afford one and mostly, other than some really lovely pieces of art and antiques, everything else is a debt. I’m still having trouble believing I’m really 73 and Garry is 78. How did we get old so fast?

    These days, the first thing I ask everyone I talk to is “how are you” and I really WANT the answer. I am so worried about my friends (who are mostly our age, give or take a few years). How are they dealing with solitary confinement? I worry about my older friends with ailing and vulnerable children. I worry about my son who is still out there working and even more about those who need to be working, but can’t.

    I worry about you and all my other online friends all over the world. I wonder if the world will ever be normal again. Will we ever feel safe? What you are going through would be terrible at any time in your life, but is infinitely harder now. I’m so glad you have been able to keep your father near so at least he gets to say his goodbyes to real, living humans. Stay well. Be careful. Love to you and all of yours.

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    1. Thanks, Marilyn. Dad passed peacefully early this morning. I remain incredibly grateful that we were able to do it mostly “his way”.

      Almost all the paperwork needed to align ducks is available online, just fill in the blanks and get it notarized.

      I think this pandemic has shattered our illusions of safety and control. They’ve always been illusory, as none of us is in charge of very much, but its a whole lot clearer to many of us now.

      Stay well as best you can.

      Liked by 2 people

  2. ❤ My heart goes out to you, Steph. Maybe somewhere in there your dad recognizes what a great job he and your mom did raising a courageous woman blessed with integrity and love. I am sure he feels better as he heads into the great unknown with you and your siblings there beside him.

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  3. It takes a toll.
    It is a great privilege to be asked to be someone’s POA and an incredible burden as well. Kinda like being a doctor, huh? You got this , Stephanie! I hope for some good sleep for you and peace fir your family.

    Liked by 2 people

    1. Thanks, Betsy. Yes indeed, its a lot like doctoring, with a few other things thrown into the mixed. Dad died peacefully around 3:45 this morning. I am so grateful that we were able to do things his way.

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  4. It’s a difficult time for everybody! As the only daughter living in this country, it fell to me to assist my mother, who lived about 200 miles from my home. She was very difficult, though not demented until the last few weeks; the decisions about moving her from her home, what to do with the home, etc. were not easy, but she assisted in those decisions. I still was with her for one week of every 3 — it took a toll on me that last for several years after her death. I can’t imagine what those decisions would have been like had Covid-19 also been a factor, and I truly admire you and your siblings for the way you are dealing with the decisions, with your father’s needs, and with his wife’s needs.

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  5. I’m so sorry to read of your dad’s passing. It’s been a tough month for you and your siblings, but it’s good that you could honor his wishes. You’ll remember fondly moments from this month as well as those from times past. But first, rest well!

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  6. Steph and Deb and family I am in tears just seeing the photo of you all back then. Some of my most precious memories. I am so sorry for your loss. What bitter sweetness is death and how a family dances in response as it’s all we can to do. We all have different needs around watching our loved ones move on. We wont get it right. Imperfection is a glide through all of our experiences isn’t it. I so honor you for your path through this. And hold space for your family with so much kindness. Your parents were like parents to me too. Sad we have lost them all. We chose them well.

    Liked by 1 person

    1. Thank you, Lynnette. It is indeed a strange dance, and as imperfect mortals, we aren’t always in step. The beauty and the pain. Thank you so much for your kind words, and it’s odd as all the “grownups “ of our youth move on.

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  7. I’m friends of the family through LC. My thoughts go out to the family. Hugs. In the times I have known your family, it was always with a generous heart and open welcoming arms. As if we knew each other for years and years. It is never easy to say goodbye. It is hard to watch our parents age. Your story was very touching. We too made though hard decisions like yours. We never regretted doing it our way. My parents got to spend their last weeks in their home and with family nearby. You will always be proud of that when you look back on this difficult time. Your dad is feeling no pain and celebrating with those who left before him. You did good.

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    1. Thank you for your kind words, Bettina. You are correct, I and my sister and brothers have no regrets that we advocated for Dad and doing things in the manner most congruent with his wishes. My only regret is that others were so unnecessarily fearful and overwhelmed by this.

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  8. I’m sorry you had to say goodbye to your amazing dad today. Even when you have time to prepare, it’s never easy. I’m in awe of everything you and your family did to advocate for Rod and figure out solutions during a pandemic. Debbie has said repeatedly that you did a heroic job of taking care of myriad details, negotiating, reassuring, showing diplomacy and figuring out what was best to honor your dad’s wishes. You and your family are so special to me, and I have many wonderful memories of your dad and mom. I appreciate the love and transparency with which you have shared the story of your dad’s final months here. He was fortunate to have raised four wonderful siblings who could make sure that his last flight was, indeed, marvelous. Love to all of you. xoxo

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    1. Thank you so much for your kind words, Eliza. It has been quite the journey, and I am so grateful that we all worked together so well and we were able to honor dads wishes. Sad and glad all at once

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  9. Oh, Stephanie, I’m so very sorry! For the loss of your father, and for the hell that you all went through before he passed. You were truly strong to stand up for what was right for your father, and to do it in a way that also respected your stepmother and the other residents as much as possible. I think one of the worst things about this virus is how fearful it has made everyone, and no one acts their best when they are afraid. The enforced isolation at hospitals now is horrible for elderly patients, and even worse on those suffering from any kind of memory loss. Thank goodness you were able to spare you father that. Wishing you and your family peace and healing…..

    Liked by 2 people

    1. thanks, Ann. He passed 3 weeks ago today. Forever ago and yesterday, simultaneously. I remain incredibly grateful that we were able to care for him as he wished. I’m also grateful that my stepmother’s anxiety has diminished, and that she and I have been able to work together well, clearing out Dad’s stuff, and attending to the settling of his estate. Phew!

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