When Alzheimer's Disease came for my husband, I was left like a widow who cannot mourn

By Muriel Porter

At first my husband's Alzheimer's diagnosis just meant taking practical steps.(Illustration: Emma Machan (ABC))

I thought I knew how to grieve, how to say goodbye and move on. Until Alzheimer's Disease caught up with my husband.

Grief marked my life first at the age of five, when a beloved uncle died. But it was my mother's death when I was 13 that broke my heart. Then my father died just weeks before my wedding. I posted out "return thanks" cards for him in the same post I sent out my wedding invitations.

So I have always been confident that I knew how to manage grief and loss. Until now.

At first my husband's Alzheimer's diagnosis six years ago when he was 75, 41 years into our marriage, just meant taking practical steps.

A visit to the lawyer to ensure wills were up to date and get enduring powers of attorney drawn up. Organise guardianship documentation, advanced care directives. Ensure my name was on all the utility accounts. Buy some books to understand this insidious disease. Watch for changes in his health and behaviour.

And hope for the best.

I was watchful, careful, and often anxious. In the main, however, life continued on as normal. We travelled overseas, enjoyed local holidays, entertained friends and were entertained, went to restaurants, to films, and to church, went for long walks as we always had, and continued hosting the family Christmas.

But relentlessly, the disease took its toll. Anything that required sustained intellectual concentration became much harder for Brian. It was the first casualty.

Anything that required sustained intellectual concentration was the first casualty.(Illustration by Emma Machan (ABC))

Patterns of a lifetime started to vanish

Called on to preside at the Eucharist in the sudden absence of our vicar — Brian is an Anglican priest — became very tricky for him, though he was not actually aware of it.

He consecrated the bread and wine twice and mixed up the order of the liturgy. This from a man who had presided at the altar regularly for more than 40 years, sometimes multiple times a week in his main life's work as a school chaplain.

The words remained firmly fixed in his mind, the pattern had left him.

I swiftly stepped in on future occasions, producing a neat little word-for-word service booklet and standing beside him at the altar to guide him through. That continued to work well for quite a while, and most parishioners were quite unaware there was even a problem.

Presiding at weddings was not quite so simple. At weddings missteps cannot really be tolerated, and the priest's wife can't easily oversee the proceeding in the same way. So wedding requests had to be gently discouraged. So too did funeral ministry.

A straightforward funeral for an elderly friend not long after his diagnosis nearly turned into a disaster when he lost the service booklets and became alarmingly confused.

Day-to-day routines at home thankfully remained manageable for quite some time, though increasingly anything out of routine became problematic. Entertaining family or friends gradually had to be abandoned, as Brian became easily stressed by change.

Our walks got shorter and shorter and became a real concern. What if he could no longer make it around the block? Who would I call on to help get him home? Neighbours? Ambulance?

And falls increased, sometimes out of the blue. He seemed to just sink down to the ground. No broken bones or injuries resulted, but the falls distressed him. We ended up driving even very short distances.

I lost a partner and a confidante

Brian's growing incapacity resulted in boredom and frustration for him.

Over his lifetime he had regularly devoured several books a week, but now he became increasingly unable to read anything at depth. Books piled up unread, as did longer newspaper articles. Television programs he had once enjoyed, no longer entertained him. Even long-favourite foods no longer pleased.

My role as carer became more demanding.

I had immediately taken over all the financial management as soon as his diagnosis was made, and increasingly all aspects of household management as well. I had been used to a husband who happily shopped, occasionally cooked, and mostly did the washing up. That had all ended but none of that really concerned me.

I was aware of an enduring sadness at all he was losing, and all I was losing.(Illustration: Emma Machan (ABC))

Much worse was my increasing anxiety, never more so than when I was away from home.

My mobile phone always remained close in case he needed me, or in case the personal alarm I had arranged for him to wear messaged a fall. He remained steadfastly resistant to the idea of occasional carers coming in to give me an anxiety-free outing.

And because of his decreasing powers of judgement, I could no longer confide in him. I had always shared with him issues arising from my own close involvement in church life.

He had always offered wise advice, a sympathetic ear and unquestioning support. That was no longer possible — he could no longer fully understand what I was sharing, and I was fearful he might inappropriately speak to others of confidential matters.

I was disappointed to discover that, apart from the loving support of my daughter and dear friends, there was no significant external support.

Medical help was resolutely in silos — the psychiatrist, the geriatrician, the GP, were all good but were quite independent of each other. There was no overall medical management. And as for trying to access the Federal Government's much-vaunted home help when the situation was deteriorating — that was laughable.

With the rate of Alzheimer's increasing markedly in our society, it is surely time for each diagnosed case to be allocated a social worker or nurse to assist the primary carer navigate the complex systems to get the best outcome all round. It was such a difficult and lonely road.

With my caring role all consuming, there was little time for reflection at any depth. In the background, I was aware though of an enduring sadness — sadness at all he was losing, and all I was losing.

Rapid change as the pandemic bore down

A sudden acute medical episode that pushed the Alzheimer's into a rapid descent brought a huge change. Brian had to be admitted to residential aged care.

Initially there was no time to reflect on what this all meant. The first weeks of his move were overwhelming, as I grappled with the enormous task of not only trying to settle him in his new environment, but also to complete the necessary paperwork and handle the complex financial issues. I was appalled at what was required, and worried sick by the costs involved.

We had thought we were well set up for retirement; we used to delight in the amount of discretionary money we now had at our disposal — something we had never before experienced.

Now, the costs involved in high-quality aged care made a mockery of that. How was I to cope? Would I need to sell our loved family home and downsize? With all these decisions, I was run ragged.

I had no time to reflect on what was happening, and besides, it all happened during the first COVID-19 lockdown. I did not have ready access, except by phone, to financial advisors, or even my friends and colleagues.

I could not even physically go to church, let alone slip into a church building for quiet meditation.

Living without closure

My daughter is my salvation. Though so busy with her own professional life and young family, her support is steadfast, from home-cooked meals to helping manage the nursing home move and the continuing care of Brian once there. Hers is the shoulder I cry on as the continuing management of Brian's complex needs, even in residential care, frequently overwhelms me.

I am now fully aware I am alone after 47 years of married life. The cumulative grief of the past six years has now hit me powerfully. I find myself crying and crying and crying, particularly as I leave the sad nursing home visits, as I walk the paths and visit the places we have always shared.

I am experiencing full-blown grief, the grief of widowhood, yet I am not a widow.

My husband, the man I had married, the man who has shared my life for more than four decades, with whom I have children and grandchildren, has effectively gone.

Yet I have not been able to say goodbye or be comforted by the religious rituals and societal customs that give us closure. How I have always hated that over-used word, but now I can see its power. I have no closure, and without closure, no way of moving on.

I grieve like a widow

Brian is still part of my life. In Melbourne's stage 4 lockdown, I can visit him only infrequently, and then only because I have wrangled a "compassionate exemption" to their strict no-visitors rule. I am glad I am able to do so, but he is now, in many ways, someone else.

Our relationship is so utterly different. I care for him like a dependent child.

How on earth am I to live with this never-ending grief, this living death, in a future that now stretches before me as a grey muddle?

And my deep sadness is not just for myself, but for him.

His life is now so reduced, in so many ways. Reduced to the confines of an aged care room, with his daily needs managed by strangers. Where the prospect of fish and chips for Friday lunch, a short walk in the facility courtyard, and attending some of the centre's activities are the highlights of his week, surpassed only by occasional phone calls and longed-for visits.

Each time I leave him in anguish at the diminishment he has suffered and agonise afresh at what more I should or could do for him.

In short, I am a wife and partner still, but not as I have known it or could possibly want it. I live like a widow, I grieve like a widow, but cannot mourn.

Blessed are those who mourn, for they shall be comforted, as the Bible says in St Matthew's Gospel. But where is the comfort for those who grieve but cannot mourn?

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When Alzheimer's Disease came for my husband, I was left like a widow who cannot mourn

Dear Therapist Writes to Herself in Her Grief

My father died, there’s a pandemic, and I’m overcome by my feeling of loss.

by Lori Gottlieb

Bianca Bagnarelli

Dear Therapist,

I know that everyone is going through loss during the coronavirus pandemic, but in the midst of all this, my beloved father died two weeks ago, and I’m reeling.

He was 85 years old and in great pain from complications due to congestive heart failure. After years of invasive procedures and frequent hospitalizations, he decided to go into home hospice to live out the rest of his life surrounded by family. We didn’t know whether it would be weeks or months, but we expected his death, and had prepared for it in the time leading up to it. We had the conversations we wanted to have, and the day he died, I was there to kiss his cheeks and massage his forehead, to hold his hand and say goodbye. I was at his bedside when he took his last breath.

And yet, nothing prepared me for this loss. Can you help me understand my grief?

Lori
Los Angeles, Calif.

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Dear Readers,

This week, I decided to submit my own “Dear Therapist” letter following my father’s death. As a therapist, I’m no stranger to grief, and I’ve written about its varied manifestations in this column many times.

Even so, I wanted to write about the grief I’m now experiencing personally, because I know this is something that affects everyone. You can’t get through life without experiencing loss. The question is, how do we live with loss?

In the months before my father died, I asked him a version of that question: How will I live without you? If this sounds strange—asking a person you love to give you tips on how to grieve his death—let me offer some context.

My dad was a phenomenal father, grandfather, husband, and loyal friend to many. He had a dry sense of humor, a hearty laugh, boundless compassion, an uncanny ability to fix anything around the house, and a deep knowledge of the world (he was my Siri before there was a Siri). Mostly, though, he was known for his emotional generosity. He cared deeply about others; when we returned to my mom’s house after his burial, we were greeted by a gigantic box of paper towels on her doorstep, ordered by my father the day before he died so that she wouldn’t have to worry about going out during the pandemic.

His greatest act of emotional generosity, though, was talking me through my grief. He said many comforting things in recent months—how I’ll carry him inside me, how my memories of him will live forever, how he believes in my resilience. A few years earlier, he had taken me aside after one of my son’s basketball games and said that he’d just been to a friend’s funeral, told the friend’s adult daughter how proud her father had been of her, and was heartbroken when she said her father had never said that to her.

“So,” my father said outside the gym, “I want to make sure that I’ve told you how proud of you I am. I want to make sure you know.” It was the first time we’d had a conversation like that, and the subtext was clear: I’m going to die sooner rather than later. We stood there, the two of us, hugging and crying as people passing by tried not to stare, because we both knew that this was the beginning of my father’s goodbye.

But of all the ways my father tried to prepare me for his loss, what has stayed with me most was when he talked about what he learned from grieving his own parents’ deaths: that grief was unavoidable, and that I would grieve this loss forever.

“I can’t make this less painful for you,” he said one night when I started crying over the idea—still so theoretical to me—of his death. “But when you feel the pain, remember that it comes from a place of having loved and been loved deeply.” Then, almost as an afterthought, he added, “Beyond that—you’re the therapist. Think about how you’ve helped other people with their grief.”

So I have. Five days before he died, I developed a cough that would wake me from sleep. I didn’t have the other symptoms of COVID-19—fever, fatigue—but still, I thought: I’d better not go near Dad. I spoke with him every day, as usual, except for Saturday, when time got away from me. I called the next day—the day when suddenly he could barely talk and all we could say was “I love you” to each other before he lost consciousness. He never said another word; our family sat vigil until he died the next afternoon.

Afterward, I was racked with guilt. While I’d told myself that I hadn’t seen him in his last days because of my cough, and that I hadn’t called Saturday because of the upheaval of getting supplies for the lockdown, maybe I wasn’t there and didn’t call because I was in denial—I couldn’t tolerate the idea of him dying, so I found a way to avoid confronting it.

Soon this became all I thought about—how I wished I’d gone over with my cough and a mask; how I wished I’d called on Saturday when he was still cogent—until I remembered something I wrote in this column to a woman who felt guilty about the way she had treated her dying husband in his last week. “One way to deal with intense grief is to focus the pain elsewhere,” I had written then. “It might be easier to distract yourself from the pain of missing your husband by turning the pain inward and beating yourself up over what you did or didn’t do for him.”

Like my father, her husband had suffered for a long time, and like her, I felt I had failed him in his final days.

I wrote to her:

Grief doesn’t begin the day a person dies. We experience the loss while the person is alive, and because our energy is focused on doctor appointments and tests and treatments—and because the person is still here—we might not be aware that we’ve already begun grieving the loss of someone we love … So what happens to their feelings of helplessness, sadness, fear, or rage? It’s not uncommon for people with a terminally ill partner to push their partner away in order to protect themselves from the pain of the loss they’re already experiencing and the bigger one they’re about to endure. They might pick fights with their partner. They might avoid their partner, and busy themselves with other interests or people. They might not be as helpful as they had imagined they would be, not only because of the exhaustion that sets in during these situations, but also because of the resentment: How dare you show me so much love, even in your suffering, and then leave me.

Another “Dear Therapist” letter came to mind this week, this one from a man grieving the loss of his wife of 47 years. He wanted to know how long this would go on. I replied:

Many people don’t know that Elisabeth Kübler-Ross’s well-known stages of grieving—denial, anger, bargaining, depression, and acceptance—were conceived in the context of terminally ill patients coming to terms with their own deaths. It’s one thing to “accept” the end of your own life. But for those who keep on living, the idea that they should reach “acceptance” might make them feel worse (“I should be past this by now”; “I don’t know why I still cry at random times, all these years later”). The grief psychologist William Worden looks at grieving in this light, replacing “stages” with “tasks” of mourning. In the fourth of his tasks, the goal is to integrate the loss into our lives and create an ongoing connection with the person who died—while also finding a way to continue living.

Just like my father suggested, these columns helped. And so did my own therapist, the person I called Wendell in my recent book, Maybe You Should Talk to Someone. He sat with me (from a coronavirus-safe distance, of course) as I tried to minimize my grief—look at all of these relatively young people dying from the coronavirus when my father got to live to 85; look at the all the people who weren’t lucky enough to have a father like mine—and he reminded me that I always tell others that there’s no hierarchy of pain, that pain is pain and not a contest.

And so I stopped apologizing for my pain and shared it with Wendell. I told him how, after my father died and we were waiting for his body to be taken to the mortuary, I kissed my father’s cheek, knowing that it would be the last time I would ever kiss him, and I noticed how soft and warm his cheek still was, and I tried to remember what he felt like, because I knew I would never feel my father’s skin again. I told Wendell how I stared at my father’s face and tried to memorize every detail, knowing it would be the last time I’d ever see the face I’d looked at my entire life. I told him how gutted I was by the physical markers that jolted me out of denial and made this goodbye so horribly real—seeing my father’s lifeless body being wrapped in a sheet and placed in a van (Wait, where are you taking my dad? I silently screamed), carrying the casket to the hearse, shoveling dirt into his grave, watching the shiva candle melt for seven days until the flame was jarringly gone. Mostly, though, I cried, deep and guttural, the way my patients do when they’re in the throes of grief.

Since leaving Wendell’s office, I have cried and also laughed. I’ve felt pain and joy; I’ve felt numb and alive. I’ve lost track of the days, and found purpose in helping people through our global pandemic. I’ve hugged my son, also reeling from the loss of his grandfather, tighter than usual, and let him share his pain with me. I’ve spent some days FaceTiming with friends and family, and other days choosing not to engage.

But the thing that has helped me the most is what my father did for me and also what Wendell did for me. They couldn’t take away my pain, but they sat with me in my loss in a way that said: I see you, I hear you, I’m with you. This is exactly what we need in grief, and what we can do for one another—now more than ever.

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Dear Therapist is for informational purposes only, does not constitute medical advice, and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician, mental-health professional, or other qualified health provider with any questions you may have regarding a medical condition. By submitting a letter, you are agreeing to let The Atlantic use it—in part or in full—and we may edit it for length and/or clarity.

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Dear Therapist Writes to Herself in Her Grief

Losing a Parent Is Hell, So Stop Telling Me to 'Get Over' My Grief

As I held the phone to my ear, listening to the sounds of the ICU in my father’s hospital room as he lay dying, I thought, This is the hard part. This was the part that I’d prepared my heart for, the inevitable day that we all knew was coming after my father’s diagnosis of esophageal cancer nine months prior. Every chemotherapy setback, every hospital admission, every missed family gathering had led us here. We knew cancer was going to rob us of our father and my kids of their grandfather.



He was dying, and his cancer-ridden body would finally be at rest.

I was 1,600 miles away and helpless to do anything but whisper to my father through the phone I clutched in my hands as I sobbed.

When the nurse got on the phone and said, “It’s over. He’s gone,” I breathed a sigh of relief.

My father was at peace.

The worst was over, I told myself.

But my grief journey was just starting. And it’s been excruciating, painful, and wonderful, all in different stages.

Though it’s been five years since the day I said goodbye to my father, I still grieve him every day. Not a day goes by that my heart doesn’t feel the pang of sorrow when I want to share a professional success with him or when I catch a glimpse of his smile on my son’s face.

I am not over my grief, and I never will be.

And I’m grateful.

Grief is not an emotion that is fleeting like anger or sadness. Some say grief is a process, but I disagree. By calling grief a “process,” the implication is that there is an end. A final moment where you say, “Yup! I’m done now. I don’t miss my dad anymore.”

But that is simply not the case.

My grief is here to stay, and I’d appreciate it if you’d stop asking me to get over it.



In fact, if I’m being honest, I like who I’ve become since I’ve had to process my grief over my father’s death. Grief has made me a better friend when my friends have lost their parents. Through my experience, I know that doing a friend’s laundry during a crisis means more than any lasagna you can shove in their fridge. And I know that funeral flowers just wind up dying and in the garbage, so I show up with wine instead.

Grief has made me more empathetic to strangers. I don’t judge as quickly when a cashier is short with me or when someone cuts me off in traffic because I wonder if they are having a day like I did shortly after my father passed away. The day when I had an anxiety attack in the parking lot at the grocery store and had to abandon my cart because I was crying too hard to lift the bags.

The man who screamed at me that day for not replacing my cart can rot in hell as far as I’m concerned. People who are carrying the burden of grief aren’t wearing T-shirts that say, “Be nice to me, my sister just died.” I’ve learned to practice kindness more often, thanks to grief.



I know not to tilt my head at a PTA meeting and say “How are you doing?” to a friend who has just lost her mother. Because I know she is fucking falling apart, and and it’s all she can do not to break the school windows with the gavel in her hands. Rather, I say “Death fucking sucks” instead. Because it does, and I needed someone to say that to me in the early months. Grief has stripped away my social filter and has made me braver, bolder.

On the day my father died, I became part of a club that I didn’t know existed. The “I’ve Lost a Parent” club members quietly and bravely carry their pain as they go about the business of raising kids, chasing job promotions, and managing a household.

The members of this club wearily welcome new members by simply saying, “Me too,” and I’ve been welcomed with open arms. The friends who have shared their experiences and the ones who haven’t judged me for my anger as I’ve navigated my grief path are the people I try to emulate when I’m offering support.



You will never hear me say “He’s better off” or “It was God’s plan” to a friend who tells me she is hurting from grief that threatens to swallow her whole. My grief has taught me that sitting in silence with a friend as she cries or the simple act of saying “I see your pain” is what will really make a difference.

Simple gestures like showing up to take care of carpool when you know a friend is struggling or arranging to show up with a hot meal for her family says that you understand where she is in her grief. Grief has made me understand that actions really do speak louder than words.
I didn’t ask for grief to enter my world, and watching my father die was absolute hell. But for all the sadness and pain, the days when my heart hurts so bad that I think it might actually be breaking, I wouldn’t trade my grief for anything.

Grief has been a gift in my life because it causes me to feel deep, raw emotion. And those feelings remind me that cancer didn’t erase my father from my memories. Yes, death fucking sucks, but through the tapestry of memories and a whole lot of tears, my father feels closer to me than ever, thanks to the grieving process.

So stop asking me to get over it. I don’t want to get over it.

By: Christine Burke
Source:scarymommy.com

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Losing a Parent Is Hell, So Stop Telling Me to 'Get Over' My Grief