The Caregiver and the Final Days

We are clearly in the last days. She sleeps 95% of the time and when she does open her eyes, she just stares, all semblance of recognition is gone. The caregiver, more than I, speaks to her as if she were the Jackie of two weeks ago.
I am paralyzed.

I am taking a drug for my back pain that makes me drowsy, so I drift around the house, not being able to accomplish anything. I put things away, I do simple chores and often find myself on another floor with no memory of climbing or descending stairs.
I think about calling relatives but what would I say? “No, she is not dead yet, perhaps today, perhaps tomorrow.”
Perhaps I will do that and not say anything else. Let them decide what to do.
She ate and drink only a tiny bit yesterday. She holds the thickened drink in her mouth for a while and then eventually swallows.
Perhaps every ten minutes I stand at the doorway to her room and watch for the movements of her chest or hands to know if she still lives.
Nothing smart or meaningful to say.
There will be a tomorrow but, right now, it seems irrelevant to me.
I struggle to think that there will be some happiness without her.
Now I will go back to bed for a while and then look in on her again.

19 thoughts on “The Caregiver and the Final Days”

  1. Lew- the strain of seeing Jackie like this must be paralyzing. You have done all you can for her though, with such dignity and compassion. Love never dies and you will always have the best parts of Jackie in your heart and memories. Allow yourself all the time you need to heal and to grieve when that time comes. Allow the people in your life, family and friends to help you in the next chapter of your life. But right now, give yourself a break- you are doing what you can in an extremely tough situation. Hang in there.

  2. Aw Lew…I am sorry, I know it’s a plethora of hard to understand emotions. When I couldn’t see past my grief (and for those of us who are caregivers, our relationship with grief begins well before death)…my dear friends who had lost loved ones before me…told me that it gets easier. I couldn’t see it, I couldn’t imagine it…but I trusted their words because it was the only hope I had left. Somehow, someway, I began moving through the process of life with my grief…and my friends were right…it has become easier…and I am a different person; not better or worse…just different. The grief I was forced into so unexpectedly, that I was so unprepared for, that was so unwanted, and unfair…I now embrace…because I know it is measured in love. I used to tell myself this all the time; like a broken record (in the days just before my dad’s death), “I got this.’” And Lew…you got this too!!!

  3. Lew, please be careful with the pain meds you are taking. Please when you can, seek other options for your physical pain.
    It is awful that you must watch this and worse that someone that you obviously love is suffering so terribly. I wish and pray for her to let go today and for you to let her know it’s ok to do so. We should all have someone like a Lew! You have done so much for her, all that you could.

    1. Thank you, Denise.
      I am not taking opioids but something that is specific for neuropathic pain and is not addictive. It does make me loopy for the first few hours but that is probably just accepted as normal by people who know me.

  4. You are such a sweet and loving husband and caregiver. She has had and is still getting the best care. You have been right there with her and even when you feel so bad yourself. I hope your back heals real soon. Many thoughts of you and your loved one these days especially. I’ve never met you and I doubt I’ll ever forget you. You are a great photographer and writer. Hang in there. I know it’s hard.

  5. Thank you to all of you.
    Somehow I had thought that being around and taking care of her would strengthen me or perhaps armor me against grief so I could better function, but that turns out not to be true.
    Thank you again.

    1. No, Lew. Grief is a valley through which we must pass. There are no shortcuts around it. You have been a wonderful husband and a fantastic care giver for Jackie. Even in her diminished state of being, you can be assured that she knows how much you love her. You have stood by her side through every trial imaginable without wavering.

      I feel much the same way that you do at this point in Debbie’s progression. Although she has not declined as quickly as Jackie in the last month, I and others can see noticeable changes. Throughout this journey, I have experienced numerous moments of grief where the tears have flowed. Now, after five years, I had begun to believe that I could shed no more tears, but with each passing loss of my wife’s abilities, I again find myself reaching for the tissues. The end does not come easy. In fact, it seems like the emotional drain on the caregiver during the last stages is the most intense part of the journey. May you find comfort and hope in the days ahead.

  6. Oh, Lou, we are grieving with you. I want you to know. We feel like we know you and Jackie. I am dreading what is to come eventually in this horrible unwanted journey and you have become my guide on, yes, muddling through. Every day I somehow dread getting your comments but then again need to . I cry with you. Hugs.

    1. Nancy, I had debated about posting this because I didn’t want to give people something more to worry about but, if something positive can be said, it is that each of us can get through this.
      I think that grief and pain is naturally proportional to how much one loves. Everything about this experience is in some way a validation of the way I feel about my wife. In some strange way, I feel that I am now justifying how she felt about me.
      I don’t like it but its all right.

  7. My heart goes out to u. U r doing the best u can, I know it forI am there, hubby with young onset ALZHEIMER’S,. Hung in there. Bless u.

  8. Lew, while I was waiting, like you, for weeks as my late partner was dying, I was on “auto-pilot”. During that time, and for about a year afterwards, I wore only grey sweats, as if I wanted to be invisible. In limbo.
    Your camera and your pen will see you through. Much love.

  9. Lew… Lynn and I have been relatively ‘quiet’ most of this time, esp since we haven’t really known exactly what/how to say it. We have been constantly thinking of you and Jackie, from 900+ miles away and during our recent long trip. I (we) wish we could do more….

    We must have missed a past post… We did not know that you hurt your back again…take care with the meds.

    You are my brother and I (we) do care.. ..


    1. Thanks, Steve (and Lynn.)
      I think parts are just wearing out and replacements are not available for my model.
      Don’t worry about doing, there is nothing that could ever have been done with this disease.
      We have a good physical support structure, wonderful caregivers and so things are going as well as possible.


  10. I love you Uncle Lew! I love Auntie more than I can verbally say right now, but I know that you and Jack both know how much I love you and how very important you both are to me! I hate that you are there and there is nothing I can help with! Please know I never stop and never will stop thinking about my second parents and all the amazing memories we had the three of us and the new memories you and I will make.

    Dad always told me things happen for a reason and we may not like it nor understand it, but it happens to make us stronger. Are we any stronger yet?

    Love you!

  11. Lew, I am so sorry for the struggle you are going through and I wish you well. I found this post on reddit that deals with death and grief maybe it will help you too it did me. Good luck my friend and may the good Lord take excellent care of your Jackie.

    Someone on reddit wrote the following heartfelt plea

    “My friend just died. I don’t know what to do.”

    A lot of people responded. Then there’s one old guy’s
    incredible comment that stood out from the rest that
    might just change the way we approach life and death:

    “Alright, here goes. I’m old. What that means is that I’ve
    survived (so far) and a lot of people I’ve known and loved
    did not. I’ve lost friends, best friends, acquaintances.
    co-workers, grandparents, mom, relatives, teachers
    mentors, students, neighbors, and a host of other folks. I
    have no children, and I can’t imagine the pain it must be
    to lose a child. But here’s my two cents.

    “I wish I could say you get used to people dying. I never
    did. I don’t want to. It tears a hole through me whenever
    somebody I love dies, no matter the circumstances. But
    don’t want it to “not matter”. I don’t want it to be
    something that just passes. My scars are a testament to
    the love and the relationship that I had for and with that
    person. And if the scar is deep, so was the love. So be it.
    Scars are a testament to life. Scars are a testament that
    can love deeply and live deeply and be cut, or even
    gouged, and that I can heal and continue to live and
    continue to love. And the scar tissue is stronger than the
    original flesh ever was. Scars are a testament to life.
    Scars are only ugly to people who can’t see.

    “As for grief, you’ll find it comes in waves. When the ship
    is first wrecked, you’re drowning, with wreckage all
    around you. Everything floating around you reminds you
    of the beauty and the magnificence of the ship that was,
    and is no more. And all you can do is float. You find some
    piece of the wreckage and you hang on for a while.
    Maybe it’s some physical thing. Maybe it’s a happy
    memory or a photograph. Maybe it’s a person who is also
    floating. For a while, all you can do is float. Stay alive.

    “In the beginning, the waves are 100 feet tall and crash
    over you without mercy. They come 10 seconds apart
    and don’t even give you time to catch your breath. All you
    can do is hang on and float. After a while, maybe weeks.
    maybe months, you’ll find the waves are still 100 feet tall
    but they come further apart. When they come, they still
    crash all over you and wipe you out. But in between, you
    can breathe, you can function. You never know what’s
    going to trigger the grief. It might be a song, a picture,
    street intersection, the smell of a cup of coffee It can be
    just about anything…and the wave comes crashing. But
    in between waves, there is life.

    “Somewhere down the line, and it’s different for
    everybody, you find that the waves are only 80 feet tall,
    Or 50 feet tall. And while they still come, they come
    further apart. You can see them coming. An anniversary
    birthday, or Christmas, or landing at O’Hare. You can
    see it coming, for the most part, and prepare yourself
    And when it washes over you, you know that somehow
    you will, again, come out the other side. Soaking wet,
    sputtering, still hanging on to some tiny piece of the
    wreckage, but you’ll come out.

    Take it from another guy. The waves never stop coming,
    and somehow you don’t really want them to. But you
    learn that you’ll survive them. And other waves will come.
    And you’ll survive them too. If you’re lucky, you’ll have
    lots of scars from lots of loves. And lots of shipwrecks.”I’m going on

  12. Lew, let me first offer my most sincere condolences for the loss of your lovely bride Jackie.
    Let me ask you something. Do you feel any less love for Jackie since her passing? I kind of doubt it. You see the things that made her special didn’t have anything to do with her physical being. Her teaching, her love, her sense of right and wrong and so on. Those things did not die with her in the shell of a body she inhabited. In fact in some ways they are even stronger. Why? Because there lessons stuck with you, even after what this world calls death. When it’s my turn to go I can only hope that my loved ones remember me for what was inside, not the fat balding man that walked with a limp and had Dementia. That’s irrelevant to who I am.
    When you remember Jackie her legacy, her positivity the changes she made in others life’s and that legacy will live on forever. It is part of her heaven. If that makes sense. I think it wonderful to leave a positive legacy. In contrast there are those people that are always negative and leave you with a poor outlook on them. That is there own Hell. That is how they will always be remembered. Because a negative legacy is worse than any fire and brimstone in my opinion. So rejoice in the fact that Jackie was such a beautiful person and have left a lifetime of memories in your heart.
    I hope this helps your heart heal faster. Remember to take care of yourself if
    You start feeling depressed please visit a doctor and have them put you on a mild antidepressant. It will definitely help. Remember that there will be periods of extreme grief. I found that some anti anxiety drugs helped me through my grief. I know they say it gets easier as time goes by but I’ve been doing this for six months now after losing my Martha and the pain and sorrow and grief just kind of washes over you at very odd times. You will get through this just have faith and remember the happy times you spent together as one. Again my condolences.

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