It wasn’t the afternoon either of us planned, or the night for that matter. We were in need of serious downtime. Instead, we were on the road to the emergency room of a hospital about an hour away.
The phone call came from an administrator on duty, not the person who knows her well. We were certain there was no reason to panic, but we were concerned. When an elderly woman is taken to the hospital, it’s only natural.
We’ve been fortunate, all things considered. He – the man I’m seeing – has been fortunate, given that Alzheimer’s can take various forms, and while his mother has suffered from the disease for a number of years, she’s otherwise strong and in good health, and she is never belligerent.
Alzheimer’s Patients: Laughter and Engagement Helps
Laughter comes easily to her, but this insidious attack on the brain robs the victim of memory and so much more, while the family struggles with the slow disappearance of the one they love.
We’ve been told that socializing helps, laughter helps, and we can see it for ourselves. She resides in an independent living community where there are plenty of activities and she’s surrounded by friendly faces. The apartments are located about an hour away from where he lives though longer in traffic, and forty minutes from where I live. The facility is bright, warm, and a beautiful environment, only blocks away from the neighborhood she has known for many years.
He speaks to her by phone nearly daily, sometimes twice daily, and sees her once a week. He does everything he can to make her laugh. The administrators keep him current on how she’s doing.
Short Term Memory and Disorientation
With her short-term memory virtually non-existent, my guy’s mother may forget she’s seen him only the afternoon before. I’m amazed at the patience he exhibits as he reminds her of the last time they saw each other, when they’ll see each other again, that she needs to eat, to take a vitamin, to be sure to join her friends in the dining room at dinner time.
This weekend, though he had visited only 24 hours earlier, someone in the residence thought she didn’t look well. They sent her to the hospital, and not long after we were on our way.
We arrived perhaps two hours after she was admitted – she seemed fine – and I sat with her as he talked to doctors and then went wandering for coffee.
She asks where her son is and I tell her he’s getting coffee. Two minutes later she asks again, then asks where we are and why and I tell her. Then she asks where her son has gone and I tell her “for coffee,” and I make a joke to distract her. Then she asks again, and keeps asking, as we continue, calmly, in this pattern of where he is, where we are, and why.
I throw a few words of Norman patois into our conversation and she laughs heartily. She has taught me these terms herself, in an old dialect no longer in use in Normandy, but great fun for her to hear as well as to speak. In fact, wordplay delights her and her son is especially nimble in this area, sprinkling his French with regional dialects that not only make his mother happy, but posing questions so she engages in discussion and expresses herself in multiple ways.
Finding Ways to Communicate or Entertain an Elder Parent
He’s taking his time in search of a hospital Starbucks. This is hard on him. The helplessness. I sense he’s relieved that I’m sitting with her, and we chat and giggle like girls, flipping through an issue of ELLE magazine that I have purposely put in my bag. We cluck our tongues at Lady Gaga’s hair, we come to full agreement on the classic elegance of Chanel, we remark on the prettiness of the Dior necklines and make light of our racks that would tumble out in certain of these designs.
For some with Alzheimer’s, music and art therapies can be helpful. With her, when we touch on subjects that remain accessible – her youth in France, fashion, cooking, her life with her husband when they moved to the US – she brightens and the conversation flows.
Still, she seems more frail than usual. Every few minutes, even with her son in view, she asks where we are and why and I repeat that we’re at the hospital but everything is fine, and why not spend Saturday night together – even if it’s hanging out at the hospital?
She laughs again. She slips back into her chic gray suit and heels and she’s more herself as her son talks to the attendant, then the doctor. This is more difficult for him than he lets on.
Fighting Fear with Familiarity
Eventually she’s released – they say she’s fine – and it’s a short drive back to her one-bedroom apartment in the residence community, and the comfort of her belongings. We’ve noticed that she likes going out for a few hours but not longer. So we adjust accordingly.
We watch awareness come and go as she tries to remember the next step in a process, or the answer to a question given only minutes before.
I recall times when I was so severely sleep-deprived that cognition was impacted. It was terrifying. I could not pretend that words weren’t slipping away, and in some small way I comprehend a piece of her fear when she can’t quite grasp what she was doing in the kitchen or a name simply slips away.
Before we leave, there are reminders to eat, and reminders that she has new walking clothes to wear courtesy of a shopping trip she shared with her son only the day before. She doesn’t remember, so she doesn’t recognize the new clothes. I wonder if the reminders aren’t more for us than for her. We know they will evaporate in minutes but we hope something in the repetition will get through.
My guy will call in the morning as he now does every day, and gently ask if she’s taken the vitamins and aspirin laid out in labeled daily containers. He’ll ask if she’s eaten.
Where Does the Alzheimer’s Caregiver Put His Emotions?
There are kisses and hugs and remerciements at the door as we say goodnight. It’s late and we head back to my place. I look at the man I love and note his stillness, wondering where he puts the emotions he doesn’t talk about, especially on the days when she calls and she’s lonely, she’s depressed, she senses she’s losing it, and he can hear the pain in her voice.
He’s an hour away and can’t leave school. But he’s there every weekend, patient and resolute.
Though her fridge is stocked, we think she isn’t eating enough. She forgets, or more likely, the blues are encroaching on her normally agreeable mood, and her appetite is waning as a consequence. We think she needs more socializing, more company, more visits – more than we can possibly provide.
“It used to be that families took care of each other,” he says. “When your parents grew older, you took them in. The way we live now – working crazy hours and spread apart, it’s not possible.”
He’s right of course. His mother is a widow, but she has two children, grandchildren in this area, a great-grandchild on the other coast. He’s carrying the load, and he never complains.
“You’re doing everything you can,” I say.
How We Live Versus How We Survive
It’s Monday. My guy is at school and teaching. I’m facing a long and jammed week ahead, even more so because work I planned on doing Saturday night didn’t get done.
The retirement community is just far enough away that for me to visit on a week day is difficult at best. But I can’t get her out of my mind – she needs family, company, laughter.
For that matter, so do I.
I wonder if there isn’t a way to manage three hours out of one day during the week. That’s what it would require to get there, to chat Dior and comment faire une mayonnaise maison – how to make mayonnaise from scratch. Perhaps to do a little cooking together.
This damnable merry-go-round we’re all caught up on just to survive – each day alone, rushing. This equally damnable disease that takes a little piece of those we love – each day alone, slowly.
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Beautiful! Thanks for sharing this.
You capture the dilemma many of us have faced quite well. The steady decline of a loved one, or family member is challenging. We went through the move from home to assisted living to nursing home and finally to the abrupt end. Not easy. My two adult sons always found it hard to communicate their emotions-watching a parent decline, particularly in our case when he was so young, is very difficult. Your guy is very lucky to have you by his side during this time.
Such a tragedy when this happens, but it was so beautifully written. Thanks.
This was so touching, and honest. It was a wonderful read.
Thank you,
elise
This is a beautiful piece. And I am happy for you that she can still respond and that you can share a laugh with her. I feel for her son, it must be so hard to watch his mother slip away. I’d say that you both are doing everything that you can.
She’s incredibly healthy, she’s generally so good natured, we can only hope for many more good years, but somehow with more company. That’s the frustration. Knowing how much that helps and being so constrained in doing more.
Thank you so very much for this honest and courageous piece. It will help me in the weeks to come when we head up north to help Remi’s Step-Mother get settled into a retirement home with an Alzheimer unit. I have noticed when we are with her that if I hold her hand it might keep her with us and that the young cousins that stand in the doorway, afraid, quickly send her off on tangents that are hard to get back from.
I know personally what a giving spirit you have and so can well imagine how you are there for your companion but please know that you are both in my thoughts.
Beautifully said… thanks for sharing this with me.
Beautiful words! Challenging moments and decisions.
I cared for my Gramma the last 6+ years of her life. There were some days I was so emotionally drained I thought I would take to my bed and stay there for a month! She was in a lovely place (45 minutes from us) and we went two-three times a week. Then when she went to a skilled nursing facility, it was even more. Her greatest fear was that we would abandon her so I felt it was so important to calm her fear and let her enjoy her great-grandchildren as often as we could get there.
Towards the end it was two-three times a day. Although it took so much from me and my family made many sacrifices, it was an honor and a privilege to do this.
Not many people see it this way these days and to read your words of concern, love, and willing sacrifice for someone advanced in years is an amazing gift. You may not be able to have her in your home {we could not either}, but you and your man are THERE for her and I am sure she knows that.
What a blessing to her indeed!
This is a big one and it breaks my heart reading this. I know its truth.
Such rich detail. Alz is so much better understood through narratives. I read scholarly essays and information page, but it’s the narratives that have the most impact on me. The word play in French / Norman, the perusing of Elle, the repeated questions, the long drive to and from. Very vivid. Thank you for taking the time to write this up.
Beautifully written. My grandmother was like that at the end. Such a brilliant woman.
My dad lived at home until the end. Watching him was the hardest thing I’ve ever done. But he always had a smile on his face. I’m not sure he always knew who I was, but he always knew my mom.
A couple of times I have heard my mother use words which are senseless in the context of their sentences, such as saying “My sawdust hurts”. I know these are momentary lapses of attention, especially since in the next breath she will give highly insightful, rational and articulate discourses on a wide range of subjects. And yes, being alone, with fewer opportunities for conversation, doesn’t help. Nevertheless they are still attention-getting and worrisome potential precursors.
On the other hand, our relationship is closer and warmer than it has ever been. I appreciate the richness of the moments, while they are still there to be experienced.
The richness of those moments, yes. Thank you for this, Robert.
BLW, this is a beautiful but very poignant piece. Where do Alzheimer caregivers put there emotions? I think that’s an excellent question. For those that have 24/7 care duty, I can only imagine how difficult it is. And for those on the fringe that love the patient, to see them slipping away is both heartbreaking and urgent. Urgent in the sense that they may be grasping for every last moment and memory before this terrible disease takes its final toll. How wonderful that you want to spend quality time with this grande dame, even though it will take a significant portion of your day. My heart goes out to you and your man. May you both find the strength needed to continue this journey with her.
For me, the challenge will be finding the time that I can schedule in some sort of routine, which is difficult (as you know) when juggling multiple clients / tasks / projects who get various parts of the day. We’re “flexible” and tied simultaneously. But I’m going to try to do this. I can’t really know if it will help her – I would hope so. But I know that the time spent with her is very much a gift to me. She is gracious and kind and sweet with me. We get to be “girls” – something in this male-oriented household that I haven’t really had. As I said, it would be a gift to me to spend a bit more time with her.
It’s also certainly not hard on me the way it has to be for those who have known her all her life. But I’m very interested to know if others have experiences whereby they’ve been able to achieve “good” time or slowing the lapses through music, art, images. We’ve tried visuals at times to help reinforce memory and we think they work somewhat better than words in certain instances, but that may only be an impression.
There is an allure of domesticity and multi-generational living in this post for me. We are all so scattered, aren’t we? And it’s interesting to me that more and more realtors are getting requests for homes that have a set-up conducive to having a separate living space for elderly parents or grown children who are maybe single parents and need some familial help. So they’re close but everyone has their space and dignity.
I know, selfishly, I wish my kids were closer geographically. You do what you can. It speaks to your compassion that you long to find 3 hours a week to visit with her and it speaks volumes of your “guy” that he treats his mother so respectfully, lovingly and loyally. It’s a terrible disease and heartbreaking to live with and through. Send her love and peace in your thoughts – and give yourself that as well.
And I wonder, BLW, when you speak of her struggling to remember the next step in any number of processes; her daily routines, if this link on sequential progression might have some suggestions that would help.
It’s written for new grandmas helping little ones remember sequential progression, but who knows? I love that you flipped through an Elle magazine with her and had fun with Lady Gaga.
I love the way you bonded through sharing an ELLE magazine. It’s the simplest things in life that we’ll remember most when reflecting back on our relationships.
My own family is dealing with finding a place for my 85 year old dad now because he needs to move out of his home where my brother has been putting his life on hold for several years to care for him 24/7. Trying to convince my brother that he needs to move forward with this has been very hard on all of us.
Things are made harder by the fact that I now live across the country from my dad and brother due to relocating for my ex husband’s job and then not being allowed to move back to my hometown without the legal repercussions of re-opening our custody arrangements since I still have a child under age 18.
You touch on one of the realities of divorce and child custody, Nancy Kay. We aren’t always free to move as we might in order to care for our elders, when we’re still raising children at home. This takes the “sandwich generation” complexity yet one step further.
Sometimes we just live too long. I wrote a blog about my mom and hoping for death for all the right reasons. http://madgew-musings.blogspot.com/2013/10/when-it-is-time-to-wish-someone-death.html