Sparked by Words

We’re trying to get to Grandmother’s House. We’re trying to take her home, even though she’s lost.

Those of us who love and care for our family members who suffer with Alzheimer’s disease know that when they say they want to go home, it’s unlikely to be the last place they lived. Because they probably can no longer remember that more recent place, and taking them there may instigate even more despair for everyone. Grasping their desires is a moon shot from making them content. They want to go back to when they were seven and felt safe with their parents; to when they were sixteen and flirting with independence; to when they were twenty-four and exploring young adulthood; to when they were thirty-two and involved with marriage, children, and mortgages; to when they were fifty-eight and celebrating the birth of a first grandchild, a  child’s marriage, another’s college graduation; to when they were sixty-four and enduring their final career years; to when they were seventy-eight and Alzheimer’s knocked down all the retirement ideas they ever thought possible. All of their life collapsed like a block tower that can’t be rebuilt.

The holiday season arrives wrought with expectations and memories that tangle our celebrations by not meeting our high hopes. No matter how much we declare not wanting presents, parties to attend, and over-the-top fashions, if we’re caring for someone who is ill, we’re likely to have our plans changed, our hopes derailed, and at least one event cut short by a crisis. Tears, anger, aggression, bathroom accidents, bathroom refusals, eating problems, repetitive motions and comments, sleepiness, anxiety, total confusion – they all show up like a beggar at our feet. It isn’t Grandmother’s fault. It can’t be, because someone ill with Alzheimer’s is no longer in charge. The disease is in charge – peculiar and heavy handed, blistering with fever and glittering with promises that can’t be kept. I hate you, they say, I love you. You must not love me or you wouldn’t leave me here. I want to go home. And we, the accused, we cringe and cry and dig our nails into our hearts. We have to leave you here at this assisted living residence because we no longer have the strength or skills to care for you “at home.” Their home, our home, someplace other than the residence where they reside – we can’t.

My friends and I discuss whether or not we’re bringing mom (or dad or our spouse) home for the Christmas Day gift exchange or lighting the Chanukah menorah. If we’ll instead replicate the event at the residence where they are cared for by professionals, then abide the guilt of the empty place at the table, the missing voice of the blessings. Can we enjoy the home celebration when they aren’t there, the absence painfully obvious but so much more sane because they aren’t? Will the rest of the family blame us for their inclusion or exclusion? Will extended family support our decision, knowing we’re crying either way?

We do what we can to reconstruct the holidays and celebrations of the times when we were younger and our loved ones were healthy. Some create second weddings so dad can be present because he couldn’t attend his daughter’s nuptials in Arizona. Others arrange for a caregiver to bring grandma to three hours on Christmas morning so she can see her great-grandchildren unwrap gifts. I’m facilitating a Chanukah dessert party at the place where my mom lives, for her, the other Jewish residents, and anyone who wants to stop by for a cookie.

We put together albums with name tags on the photos so our loved ones whose minds are drifting in and out of reality can identify their spouses, their kids, their closest friends. We collect mementos for the shelf in their room, things they can hold and turn in their hands – the carved shell from the anniversary trip to Hawaii, the bronze award for signing the most contracts twenty years ago, the lifetime membership pin for the service organization to which they’d devoted so many years of altruistic fervor.  We coax them to recall names even when they forget them ten seconds later. Even when they are our names. Even when it’s hopeless.

These are the waning years when their moon has left its natural orbit and traverses an alternate route through space. We try to fill their mutilated minds with lifelines and safety nets and touchstones, hoping for memories to be lastingly imprinted. But it is only on our memories they’ll survive, and we wearily know that too, the failures of all our efforts. My mom’s brain will continue to retract, to default to a younger and younger self as she seeks familiarity.

And I’ll find solace in my memories of the occasions when we all gathered to light candles and say blessings for the wealth of our lives. When Mom was well a very long time ago, when my dad was with us. We take our ill loved ones to Grandmother’s House wherever it might be, and there we wait, praying for a few moments of shared joy and the flicker of recognition that makes all the work worthwhile. See you at home, Mom, see you at home.



Note: I’ve written a novel about the devastation Alzheimer’s forces on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are sixteen years of assisting my mom through the labyrinth of this illness.


Image courtesy Pixabay

Comments on: "To Grandmother’s House We Go" (46)

  1. Sending you the hugest of blessings and hugs—for the holidays and beyond. Sixteen years is a very long haul. Good luck with the book.

    Liked by 2 people

  2. My hope is you find support and peace with your decision this holiday season, Shari. The carefully decided upon honors your loved one and that is all we can ask of anyone. ♡

    Liked by 2 people

  3. Such a devastating illness, for all parties involved. I hope you find representation for your book. It’s such an important issue.

    Liked by 2 people

  4. Sharon, I wish you success with your book which must be written from both knowledge and
    with the emotions felt by both sides. In this case, the mother losing herself gradually and
    the children seeing their mother disappearing – day by day.
    I have no direct experience but have gone visiting with a good friend.


    Liked by 2 people

  5. My heart goes out to you this holiday, Shari. I can only imagine the mix of joy and fear you face. When I read the title at first, I thought of you as the Grandma! Hope those plans are going well.


  6. Jenna Barwin said:

    Sharon, you brought tears to my eyes. You’ve captured in words the pain we all go through as we see a disease strip our loved ones of their minds, and how hard it is to make the decision that it is no longer safe to bring them to the celebrations, that we risk more harm than good to take them from the safe environment their caretakers provide. Bringing the celebration to them is the best we can do under a difficult circumstance. My heart goes out to you.

    Liked by 2 people

  7. Labyrinth is the best description I’ve heard. There perhaps is no way out only a way in until the center is broached.

    Liked by 2 people

  8. Beautifully and articulately written, Sharon. I’m sure you’ll find someone interested in publishing your book and hope it’ll be soon. It’s a timely subject for many, as we baby boomers age into this disease and demands will grow for more facilities that can care for those with the disease. Your book will illustrate how Alzheimer’s affects families and friends and no doubt help with the decisions that must be made. It’s such a horrible disease…..
    Thank you for this post.

    Liked by 2 people

  9. The last time my father was at a family gathering, the only person he would talk to was his four-year-old granddaughter. He was never included after that because he went downhill so fast.

    Liked by 2 people

  10. Sharon this is beautiful but so sad for you and for other families whose loved one is afflicted with dementia of any type. There has been a recent move in Australia to create some facilities for alzheimer suffers that replicate a room from their 7 year old self and finally we are starting to have places that cater for a primary language that is not English. I know it all takes time but I am looking forward to reading your published book.

    Liked by 2 people

    • It seems that Australia is way ahead of the US in providing compassionate surroundings for those with Alzheimer’s. I’m not even sure where my mom lived when she was 7 but that might be the very thing that could bring her some comfort. I know of several people who’ve reverted to speaking a childhood language (French, Spanish, Dutch, German) as their health has declined.

      Now are things going with your book, Irene? I’ve been looking forward to reading it for a very long time.

      Liked by 1 person

      • I know it is happening but it is in the experimental stages and not as yet widespread but it is showing very promising results. They are also finding that having chickens in the nursing homes are proving beneficial for brain health of those struggling to retain their memories. Something to do with having a dependent creature … I worry about all the chicken excreta.
        My book is almost to the stage I am ready to put it out there. Mum told me the other day that she wanted to see it published before she dies and I told her that i was giving her a reason to live by not publishing it but I have decided I have to get it out as soon as possible to give her her wish.


      • I’ve seen plenty of evidence of the transformative powers of animals to improve people’s outlook and participation. This is true for all people, not only those who are ill or aged. Nearly everyone is healthier and has a stronger sense of being present (you’ll understand that) as well as something to live for. I saw the videos of the people delightedly caring for chickens. It was very sweet – the folks gently holding their chickens – love! – but I worried about the same issues – germs.

        Let me know when your book is out.

        Liked by 1 person

      • Don’t worry Sharon – the world will know when my book is out.


  11. I’m reminded here of how things hurt because we care …


  12. Shari, your eloquence and first hand (or rather, second hand) experience with this disease should be documented into this book and published for all to read! The holidays are ridiculously difficult for family with memory diseases. My first job out of college was as an activity director at a nursing home. Often I would walk into the hospital and see that someone had recently passed away. As a 23 yr old, this was tough to see and understand, but being in the environment daily, so many families just didn’t visit often. With my mom’s increasing dementia, we can only have her over to one of my brother’s homes on christmas Day and that is by medical transport (she is non ambulatory). Christmas Eve is out of the question because by 7pm she is so confused and agitated that we can’t have normal conversations. We do try to go over to the nursing home and visit while we are there visiting (she lives on San Diego, we live in Sacramento). I often wonder how we can avoid this terrible disease.

    Liked by 1 person

    • Many years ago I worked at an assisted living residence. I loved the residents but distrusted the irresponsible administration. It showed me what I did not want for my mom. There are many Alzheimer’s research projects underway, one of the most promising being the UCI Mind group. Any breakthrough will be too late for my mother and likely for me, should I come down with it, but hopefully my children and grandchildren will be protected. Living as healthy a life style as possible is a good defense but not a guarantee.

      Terri, I am so sorry your mom suffers. I completely understand about the limitations of visits to her children’s homes. My mom loves getting mail. Your mom might like getting cards from you when you can’t visit.

      Liked by 1 person

  13. Beautifully written. Thank you.


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