Family Matters

Portrait of my husband with image of our son holding the twins hands while walking away, with two faces of our daughter

It’s been many months since I wrote here, and our lives have changed radically. How we have coped and are coping is what I will talk about here.

My beloved husband was diagnosed with stage 4 inoperable lung cancer in July.

At this point he is okay and not okay.

It started with pain in his back and under his right shoulder. I thought he was straining himself because of holding my arm when we went for daily walks. But the pain got worse and worse and one day on our walk he had to lean against a building because the pain was that bad. He made an appointment with a pulmonologist who ordered a CT scan of his chest and torso. There is was. Cancer in his lung had spread to his upper spine and lymph node and to an area of bone near his hip. He immediately had the scans sent to Memorial Sloan Kettering Cancer Center, where the first doctor he saw was the surgeon who told him it was inoperable because it had metasticized. He was referred to a young oncologist for treatment. The pain he was experiencing was excruciating. He was taking Extra strength Tylenol, then moved onto Oxicodone. Heavy duty drugs to kill the pain were not enough. Night after night he suffered waking with pain. Then the oncologist sent him to a radiologist. He had 3 courses of radiation which is palliative care. After he suffered through the radiation burn, horrible burning sensation in his chest, days went by and the pain subsided and at this point he says he has no pain. The oncolologist tested him for any genes that would enable him to be put on immunotherapy. It turned out he has a gene mutation that made him eligible for a gene therapy called Tagrisso. This drug has demonstrated that it significantly delays cancer progression, and is associated with fewer side effects than standard chemotherapy.

Waves of terror run through me. My beloved. My husband. We have been married almost 44 years. We’ve been through the highest highs and the lowest lows. But this is sheer terror that I must fight every day. He is well enough to go for daily walks, but wasn’t able to keep up an exercise program that the tele-health doctor recommended. There is fatigue. He needs to rest several times a day. He has to pace himself.

We have gone through the prayers, the hope, the negotiating with G-d. Please take me first I have prayed, and continue to pray every day.

This is a very complicated and tragic situation. He is my caregiver, the one who does everything for both of us. Now he is his own caregiver too. Beyond unfair. No one deserves to go through much turmoil.

Makes me think of the end of the movie Unforgiven which my husband loved to watch repeatedly years ago. Gene Hackman who plays Little Bill, says “I don’t deserve to die like this” to Clint Eastwood who plays William Money and is about to kill him. William Money then says to Little Bill, “Deserves got nothing to do with it”.

But this isn’t a movie, and we can’t pretend.

The disease has affected my balance severely and the simple act of walking is much slowed down as I weave around this house. I often have to hold onto the furniture and walls when I walk around. As before, I sit a lot. I need help getting started and my husband helps me to get out of bed and accompanies me down the stairs. I still push myself to shower and wash my hair, and do the routine I call, “dress, groom, teeth, hair, makeup”. More and more I look like a demented lady. I no longer recognize the face that stares back from the mirror, but I know it’s me. I dress myself from the clothes I put on a hanger every night before I go to bed. I end up sleeping on the couch with the ear buds in my ears attached to the TV remote control. fall asleep with the TV on mid series. I finished watching the entirety of The Crown. Often I go upstairs to sleep again for a few hours in the morning. I do sleep, but the sleep is broken. Sometimes my sleep is so clotted with dreams I wonder if I am watching TV or asleep.

What I am doing is trying to distract myself from the waves of panic. Fear.

I am not a good candidate for assisted living, or a memory care facility or a nursing home. I am not a contented dementia patient. I do babble incoherently a good deal of the time (I read that this is damage to my brain stem) but I am still conversational and can listen, speak and comprehend. I can function here. If you witnessed my “functioning” you would call it crazy. The reams of paper towels I use to dry the few dishes I use. Having to put my towels on the bathroom floor ready for me after I shower. The endless narration when do things which means I talk to myself out loud. The need to put the coffee cup I use in exactly the same place when I put it away. The same with my clothes.

I still know how to find the links to the zoom chats I go on – Dementia Action Alliance, Jill Goldman’s Alzheimer’s support group, my therapist Pamela, my friend Jackie Pinkowitz the chair of DAI, my friend Tim and Harry Urban’s support group. I can Facetime with my friends Jeanne and Razel. I so look forward to the visits from my niece Caarin, who has begun to reteach me how to knit. Besides the expense of a decent facility is over $10,000. a month. AND I never want to be hand fed if I can’t feed myself, I don’t want to be showered by aides. NO! I’m in the moderate stage of Alzheimer’s. I don’t go out alone anymore, I can’t prepare meals or go food shopping. I don’t function well outside this house, and my husband is usually here. But now he has cancer and I am terrified.

I wanted to die at home and that was my plan. I thought my dear husband would have many years to live beyond me. I am still praying for that. Quiet on the outside but frantically praying something takes me before him.

My daughter has told me that she won’t be my caregiver. My son now has four children under the age of five. His wife gave birth at the end of August. One will be five in November, and the twins will be two in a few days. This is a situation with no solution.

My body has gotten a lot weaker but so has my beloved’s body. He has to pace himself now. He has to rest a few times a day, take a little nap between the many things he still does. He takes care of our house, goes food shopping and prepares our meals. He is handy and has been fixing the floor tiles in the upstairs bathroom in order to reinstall the toilet properly that was leaking. He has been on unemployment since March when his company furloughed most of their employees due to the Covid virus. Now he has applied for Social Security. He used to say he would work until he was 70. He’ll be 67 in a few days. My Libra love. We are heartbroken together, but he still makes me laugh. A few weeks ago he cried out to me “I can’t take your relentless self pity!!!”. But then he turned that into a decree and wrote on a card that he folded and placed where I write my daily list – “NO RSP”

No relentless self pity.

10 thoughts on “Family Matters

  1. I’ve been missing your posts; never thought of this. I have no words but will only say help comes from unexpected quarters, so please don’t give up hope. Keep drawing, keep writing.
    Best wishes to both of you.

    Liked by 1 person

  2. Minna!! So much sad and unexpected news. We could never have imagined the perils of growing older that have descended on your family. There is no fairness and no way to rationally understand all the misfortune. That you continue to be able to write and draw, to share your insights , is your lasting gift. How difficult this is for you at this time. All these serious difficulties made so much the worse by the presence of COVID-19.

    It was shocking initially to learn about your health and a second shock now to learn about Wayne. Glad to hear there has been a procedure to relieve the pain but that does not alleviate the fear. I am sure there is an element of the surreal in all of this. It does not seem at all to match what you expected from reality.

    There are no words to comfort. Only to say how I admire your courage and honesty to share your experience . We may as we age find it necessary to prepare ourselves for a similar fate. Something will catch up with us all. But it seems far too soon!! ❤️💔

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    • Dear Geanna,

      The perilousness of this situation can only be likened to going down on the Titanic, because those people knew what they were facing!!! And yet…here we are day after day, hanging on. Yes it is surreal witnessing our mutual decline. Yes, it does not at all match the timeline we imagined, or the way in which we would age. Six years ago we were dancing at our sons wedding, full of joy and hope for the future. It gives a sad new meaning to the saying “life is what happens when you’re making other plans”.

      I worry for our daughter, who has had to face this while still in her twenties. I lost my parents when I was in my late forties and early fifties. On so many levels this is so unfair. But life is unfair to many. I know our situation must not be completely unique. I just pray she develops the resilience to not allow this to break her. I pray for her! Our son is a good deal older than her (8 and 1/2 years). He has a brilliant wife, 4 children under the age of 5, healthy in laws who help them tremendously. He will somehow weather this tsunami. But our daughter is the fragile link, and it has fallen to her to be the one to be the most closely connected to us, the one who sends meals, accompanies her father to the oncologist, makes the arrangements for treatments and care.

      Everything you write is absolutely spot on. It is courageous of me to share honestly. Your words are a comfort simply because that unlike so many others, you do not turn away. Many I know read my blog but do not comment, or reach out to us. You, Geanna, have great strength of character. I remember reading things you wrote about our late friend Larry Giannettino, whose untimely death from AIDS at the age of 45, affected you so deeply. You are a person who acknowledges the pain and heroism in facing our mortality. For that I thank you.

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  3. Hello Minna,

    My name is John. I’m 57 and live in San Francisco with Eric, my partner of 27 years. After 2 years of cognitive decline, I was diagnosed with Early Onset Alzheimer’s in April, and found your amazing blog a couple of weeks ago. Your unvarnished honesty, exquisite writing and brilliant art are such a help and inspiration to me!

    I’m so very sorry to hear about Wayne’s diagnosis but glad he is receiving good care. Your love for Wayne is so palpable throughout your writing, and helps remind me that love endures and deepens in the midst of heartache – something I am just beginning to experience and believe. Please know that you are making a difference and are loved, even by people you don’t know.

    Liked by 1 person

  4. Minna – I am still in shock when I think about Wayne’s diagnosis every day. It all feels like a terrible dream. Truly, I wish we could just focus on his cancer – but given your situation that’s just not possible. It’s overwhelming in so many ways. We have to take each day as it comes and try to make the best of what we have. I’m so happy you were able to write this post – it is so important. I know it took tremendous effort on your part, and that you’re never sure that you can do it. But you have! I love both you and Wayne – and of course will see you very soon.

    Liked by 1 person

  5. Hello Minna,

    I am truly sorry to hear about your husband. I have missed your blog and have wondered what was happening in your life. You have always written with heartbreaking honesty about what one goes thru when dealing with dementia. None of this “Dementia has made my life better” nonsense that always turns me off. You chronicle each step of the way with clarity and even brutal reality at times.

    For the last 7 months my husband has been affected by constant sciatic pain which has really impaired his mobility. This has made me understand
    a bit of what you are going thru. He does the cooking, the shopping and a lot of chores normally, but all of this has been affected. And it made us both rethink about plans for the future when I will have to rely on him for all. It is a very scary thought. He also is a survivor of Prostate cancer, it will be 6 years in December.

    As a retired RN I can tell you that today, inoperable cancer is not what it used to be. People can live for years with it, and palliative care measures make life more tolerable. Don’t give up hope, new cancer fighting drugs, unlike for Dementia, come to the field very often. Enjoy the times that you both have.

    And above all, keep writing whenever you can, I am always eagerly waiting for your column.

    All the best.

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  6. Dearest Minna,
    I am so sorry about your husband’s diagnosis and your continuing decline. This is so tragic and unfair. There don’t seem to be any answers. You have a strong faith, hopefully it will carry you now. You both are in my thoughts and prayers. Caarin is such a beautiful light and help in your life. Maybe others will step forward. Please know that you are supported by many and loved deeply. Praying for an answer.
    Ruth

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  7. Minna-
    Just read your latest post, Family Matters. My thoughts and intentions go out to you, your husband, and the rest of the family. I found the button on RSP very poignant and especially relevant for everyone this year. Important principle to live by. I miss seeing you and everyone at the Rubin, and I hope we can welcome guests back with regularly scheduled programming in the near future. Stay strong, and keep writing.

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  8. Minna,

    Like so many of the other comments, I was so happy to see a post from you; it has been a long time.

    It’s taken me a couple of days to process the latest information you shared. I’m still not sure how to reply.
    I am saddened by the news of your husband’s cancer diagnosis. I am glad there was some relief from the pain with radiation.

    From what you said about the people you still communicate via Zoom, FaceTime, etc., that you have a very good support group. Having Caarin in your life is a blessing. I know it gives you great joy being with her.

    I can’t imagine what you’re going through, Minna. But I do know G-d is in control and all things are in His timing, not ours. I pray you will continue to write and draw and share with all of us as long as you are capable because you are bringing a LIGHT into many communities. Your transparency and honesty is helping so many people that may be going through difficult times such as you. G-d’s plan is always perfect even when it doesn’t align with ours. I believe He’s using you in ways you’ve never thought about.

    I will be keeping you and your husband in my prayers.

    As always, I’m sending you Light and Love ~

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  9. Hello Minna. I am so sorry to hear of your latest news. Like everyone else, I have no other words. I am glad though that you have your children and Caarin. I hope that together you will find strength and resources to help. I am still very happy to see you writing and letting us know where and how you are.

    Lily

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