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)
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.
LikeLiked by 2 people
Thanks, Peggy. It’s been a long haul for me but also for my mom and all the family – everyone is affected. It’s like this for every family that has a member with the illness.
LikeLiked by 1 person
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. ♡
LikeLiked by 2 people
That’s a really compassionate way of seeing this situation, Audrey. Thanks for a healthy point of view I hadn’t considered.
LikeLike
Such a devastating illness, for all parties involved. I hope you find representation for your book. It’s such an important issue.
LikeLiked by 2 people
Thank you, Carrie. Ten years ago I was committed to not writing about this illness. Now I realize my voice is unique and qualified.
LikeLiked by 1 person
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.
bless
miriam
LikeLiked by 2 people
Miriam, I hope you never get any closer to this illness than observing with your friend. Thank you for your observant comments.
LikeLike
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.
LikeLike
I hadn’t thought of that, but most people don’t know so much about me. Yes, I relish being a grandmother. Thank you, Jacqui, for your kindness.
LikeLike
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.
LikeLiked by 2 people
Thank you, Jenna, for your kind words. I know you understand this situation and how terrible it is.
LikeLike
Labyrinth is the best description I’ve heard. There perhaps is no way out only a way in until the center is broached.
LikeLiked by 2 people
Like looking for the Minotaur.
LikeLiked by 1 person
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.
LikeLiked by 2 people
Betty, thank you so much for your support. When friends believe in me, it helps me believe in myself.
LikeLike
Keep me posted on how it goes, Sharon. I’d be interested in reading your book when it’s published.
LikeLike
I will, and I’d love for you to read it, but it may be a very long time.
LikeLike
Understood, Sharon – I’m just glad it’s in the works!
LikeLike
Thank you, Betty. I’ve been reading a book about Ernest Hemingway and how he struggled to get his first books published. Hemingway, for goodness sake.
LikeLike
That seems to be common among the greats. And artists too. Poor Van Gogh, he never knew how valuable his paintings would become. Alas!
LikeLike
Many artists, inventors, writers, and other creative types suffer from mental instability of one kind or another. Lots of research has been presented linking those with a fragile state of mind who create the most incredible art and other works. And so many, like Van Gogh, doubt their abilities while they put out the most remarkable work. Few got wealthy on their labor. It’s others who have benefited financially after their deaths.
LikeLike
Sadly, this is true. I’ve read several articles on the subject (including one on Beethoven). They’re either exploited by others, or simply unappreciated until after their deaths, as you’ve noted. It seems to happen more often than not, actually.
LikeLike
Unfortunate that many talented artists are not recognized until after their deaths. And it’s most true of those who create fine art. Musicians, actors, singers, architects – many get plenty of the limelight while they’re alive. Maybe it has something to do with performing being a present kind of activity while art and sculpture need reflection to be appreciated.
LikeLike
Yes, that’d make sense. Performers require an audience in the present whereas writers, artists, etc. need solitude, peace and quiet. (At least I do! 🙂 ) Performers are more apt to be extroverts, and maybe we writers are more apt to be introverts?
LikeLike
Yes, extroverted personalities might account for success during one’s lifetime, but the issue of mental instability and creativity is another issue – probably something that can’t be adequately resolved on this little blog. 🙂
LikeLike
Yes, you’re right. One could write volumes! Thanks for the discussion, Sharon. 🙂
LikeLike
You’re always interesting to talk to, Betty.
LikeLike
You too, Sharon. 🙂
LikeLike
Thank you.
LikeLike
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.
LikeLiked by 2 people
There’s such a lovely bond between grandparents and grandchildren. They’re able to communicate even without words. But I’m sorry your father declined so fast after that, Glynis. It’s a taxing memory.
LikeLiked by 1 person
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.
LikeLiked 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.
LikeLiked 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.
LikeLike
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.
LikeLiked by 1 person
Don’t worry Sharon – the world will know when my book is out.
LikeLike
Good! 😉
LikeLiked by 1 person
I’m reminded here of how things hurt because we care …
LikeLike
So very true, Daal.
LikeLiked by 1 person
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.
LikeLiked 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.
LikeLiked by 1 person
I sure hope research is on the brink of an effective treatment or cure if possible. Thanks for the idea of the card. The folks at her nursing home are very caring and nice, thank goodness.
LikeLike
Loving care makes such a huge difference.
LikeLiked by 1 person
Beautifully written. Thank you.
LikeLike
Much appreciated, Hannah.
LikeLike