The Caregiver Deals with Grief

While caring for my wife during the last 4 years of her life (she suffered from Primary Progressive Aphasia) I wrote the pieces in this blog to help me sort out what I was thinking and feeling and as a way to reduce stress by being objective about facts, sentence structure and story.
I have not written much since she died but someone asked me how different I felt now and my note to this person turned into the following.
Perhaps it is not appropriate to write when I am depressed, but that depression is a real thing and it is what I want to write about.
Jackie never went through a really difficult stage, especially compared to others I’ve read about and so I believe I had it relatively easy as a care giver.
While I was taking care of Jackie, I didn’t think too much about the real issues of the future, just entertained the vague idea that I wanted to have a try at a new life.

I wanted to live and not just exist.
While I was a care giver, I had a role that kept me going. I could care for her and not think about tomorrow. No matter how silly it seems, I could even fantasize that something miraculous would happen and she would recover. I went on mindlessly from day to day, the disease making all the big decisions and me handling the rest.
About a year prior to Jackie’s death, I was lucky enough to find a wonderful person to help me. She had great experience and was better at every aspect of care than I was and eventually took over virtually all of the difficult tasks with Jackie. I became her helper whenever she needed it, doing all the shopping, some of the cooking and whatever else a household needs. Best of all, my time with Jackie could be low-key and comforting – to both of us. As Jackie’s disease got worse, between the care giver and her mother, Jackie was cared for every waking moment, seven days a week.
As expected, because Jackie had always been a fragile patient, she declined quickly, went into in-home hospice and then, two months after entering hospice and just four years after diagnosis, she died. She died, as she lived, quietly and gracefully.
For the first few hours after her death, all I felt was relief, relief that she wouldn’t get worse, that she would never really suffer, that the disease had left our love intact.
And then I went into a haze.
For about two weeks I got up, worked on the house, walked around quiet and numb. When I asked her care givers to advise me about a memorial reception, because I was incapable of figuring out what and how, they told me to go rest and they arranged everything.
The days after the reception, I went about things on autopilot, seemingly all right, but in reality just numb. I still slept on my side of the bed and tried to keep the house going the way that Jackie would have. As my consciousness gradually surfaced through the haze, it seemed clear to me that I must move for several reasons.
Jackie and I had lived here in this house for 32 years – most of our married life – and everything, every single inch of the house and its contents reminded me of her. If I was to actually live, I needed to have some relief from the constant reminders- both good and the bad.
The prior four years had been a struggle to put aside how relatives and friends had forgotten Jackie – and me. I needed to leave that anger behind completely.
The house was much too big for me alone and the struggle to empty it would only loom larger the longer I stayed and put it off.
We lived in a town crafted for families and couples and young single people. I needed a place with more, more to see, more to do, activities that would be distractions, if not actually enjoyable.
Yes, I know that conventional practice is to wait a year before making any big decisions; yeah, so what.
A year might be a substantial part of the rest of my life and I needed to do something and not just stay in place and slide deeper into depression.
A move meant leaving my only two good friends behind – and that hurt – but I couldn’t make a new life here.
So I spent 6 weeks getting the house ready.
I couldn’t bear to sell anything so I gave away the entire contents of my home until everything I own now fits in my minivan.
When I am not traveling, I am living with my daughter and son-in-law and will eventually take an apartment in Hudson, NY until the spring when I will move into Manhattan.
That is what I am doing, how I feel is something completely different.
Everything I do is meant to be a distraction. Nothing is really enjoyable and I am incredibly lonely. But not lonely for just any companionship, I miss my wife.
Her death took away, not only her presence in my life, but the last responsibility I had. I was taking care of her, the most important thing I have ever done and when she died, I was left with nothing.
So now I am free, with no responsibilities and can do whatever I want except be with her which is what I want the most.
The days are filled with distraction and thus are tolerable but the nights are terrible.
I am seeing a grief therapist and she tells me that everything I feel is normal.
I have tried to live these last four years by holding onto the Four Noble Truths of Buddhism; these say essentially that life is suffering, that we suffer because of our attachments and expectations and the only way to relieve the suffering is to let go of these attachments and expectations.
These ideas were helpful to get through the day to day struggle with the disease and an ill wife.
Now all I have is the loss and the pain and I don’t know how to do anything but hold onto it.

13 thoughts on “The Caregiver Deals with Grief”

  1. Lew, your writing about FTD, Jackie and your own feelings of grief are treasures for many of us who suffer as you do. When I read your words, tears come to my eyes, tears that I otherwise suppress easily.

    Your words express my feelings so well. The most important thing is that you bring out into the open this nameless dread of ..’what will happen afterwards.’ I find myself sad, terrified in fact, of the material things that my darling Arlene and I had together.

    Your words give my hard-to-describe but deeply-felt terror a sense of reality. Your words tell me that as I write, others are feeling the same way about their loved ones… experiencing the sadness/terror of the imminent transformation of the physical world that we all built as couples in those better years when FTD simply and universally meant Floral Telegraph Delivery.

  2. I recently went through a very similar experience as you are going through now. Except for my spouse did not physically die…but still was a loss to me. I had no one that truly recognized my grief and I didn’t hear the typical sentiments of consolation that one would expect after a loss. After months of tossing about I am finally starting to feel like I can recover and actually have a meaningful life. I am amazed at how long it has taken me to just feel “normal”….if such a thing exists. Hang in there Lew, it really does get better friend

  3. Lew, thank you for sharing your feelings. You have to be very brave to show vulnerability. “She died as she lived, quietly and gracefully” is such a tender way of expressing your deep love for Jackie.

    I completely understand when you say that you’re lonely for your wife. No one else can fill that void. I’ve told people that I am always lonely no matter how many people are with me, I am still lonely for my husband. Of course because of FTD/PPA, I’m lonely even when I’m with him too..

    I hope you realize how very much you are helping so many of us validate our feelings of sadness and loneliness. I am grateful for all of the support you are willing to offer all of us. Thank you, and take good care of yourself.

    1. Thank you, Lew. My husband will be admitted to hospice care in the next few days. As always your insight is so helpful and a must read. Your thoughts about so many things I realize I have worried about also and gives me hope and new perspective.

      1. Shirley, that was a big step for us when that happened and I remember having very mixed feelings about the moment. We had to put the hospital bed in a room interpret floor and Jackie adapted to it immediately without any fuss. She took to the hospice aid, who came in three times a week, as it she had known her her entire life. Jackie was comfortable and quiet and everything went easily.
        I wish the same for you.
        If you ever want to chat and there is no one better around. Just send me a message.


  4. We were married 43 year when my husband died. It’s now been 15 months and I miss him as much today as I did the day he died That day I was happy for him. I know I have to sell our house, it’s to big and to much land for me to take care of. I;m so torn about moving. Wish there was some way I could afford to stay.

    I just can’t get rid of his things. Lew, how were you able to give your wife’s things away?

    I to stay busy. I’m okay when I’m with others, but not when I’m alone.

    Lew, know we all care about each other. Keep on writing.

    1. Sandi, During Jackie’s illness, she became less invested in her ‘stuff’ and concentrated her attention on her care givers and one small plush comfort blanket a friend sent me.
      Surprisingly, giving away everything but the essentials was liberating.

  5. I am so grateful we are becoming friends. I treasure your truth, vulnerability, strength. I also love how much you love your wife. It is incredible. Please know how many of your us ( your followers) love you.

    1. John, I will always treasure our friendship and it is somehow perfect that the plush ‘blankie’ you sent for my comfort became the single item that Jackie held onto from the moment I showed it to her until her death.

  6. My Bill passed away three months ago. Our battle was 4 years as well, maybe a little longer.
    I’ve been trying to describe how, “there’s nothing left of me; I was 100% defined by caregiving and the disease. And now I have no purpose. Bill and I got through this, “muddled through”, as you say, but now I have no life.”
    I have moved from our house to a new house. And now I need to find a new life, build a new life.
    The grief keeps me on a roller coaster; I have a few good days and a lot of down days and a few good days and the cycle continues. I asked my counselor, “when will this end?”.
    Sometimes the down days seem worse than they’ve ever been before. She consistently tells me, “you have X amount of grief to go through and there’s no way out except going through it”.
    I’m always trying to define that grief and your words, Lew, brought me relief. Knowing that there are words to describe this and there are other people feeling the same way I do. Please keep writing.

  7. Lew, You describe my experience so beautifully. I have thought there was something wrong with me, some defect that prevented me from “Getting on with it and building a new life.” Of course the problem is that a new life is not what I want at all, but the life I had with my husband, knowing I was truly loved, and knowing that he would do all he could for me–even as he became less and less able. I feel as is he was the love of my life and I am struggling to go on for both of us. I send you my compassion and understanding and wish you well in the new life you are creating for yourself.

  8. Lew, you are so open and write beautifully. The vulnerability comes through clearly, and it really helps to have someone say what I myself can’t express yet. Although we aren’t at that point yet, I find myself thinking of and preparing for the future and when he dies.
    Have you thought about putting these blog entries into a book? I for one would love to have them with me, to draw strength from as we get deeper into this journey.

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