In caring for aging parents, can we see assisted living as assisted loving?

Making the decision to place my mother in memory care as her dementia progressed was wrenching but each day I find that the circle of love can extend beyond her family.

Not long ago in conversation with a friend I found myself making a slip of the tongue.

“Mom is in assisted loving,” I said. “Um, I mean, assisted living.”

Later I rolled the idea of this around in my head.

Is it possible that the decision I made five months ago for Mom to move into a nearby memory care facility wasn’t an abandonment but an act of love?

In acknowledging that I could no longer be Mom’s full-time live-in caregiver while working full-time and navigating the end of a long marriage I had done something that doesn’t come easily to me. I asked for help. I asked for some assistance in the living and the loving of a life that dementia had derailed.

Her family will always be the most loving presence in Mom’s life but I now know we can allow others into the circle. This has taken me some time to accept. The idea that no one could take care of her as well as I could prevented me for months from even exploring the option of memory care, even though it was financially feasible due to Mom’s savings. How could I trust any facility, no matter how well respected or how well trained and caring the staff, to do a daughter’s job?

Photo by Kristina Litvjak on Unsplash

As I’ve written about previously, dealing with my own guilt and shame that I couldn’t handle Mom’s care on my own was a good part of the journey last year leading up to her placement. Once I found the courage to talk to my siblings, and had their complete support, I was finally able to take the practical steps to choose a nearby facility.

And now, four months later, I have the confidence that Mom is being well cared for. I know this because my sister and I visit and spend time with her several times a week. We chat with the head nurse, the center director, the social activities director, and the CNAs (Certified Nursing Assistants) who do the bulk of the care work. I have seen the way these CNAs take the time to get to know a resident’s habits and preferences. They seem to know intuitively which resident needs a calming hug, who would enjoy a playful joke and how to steer a wanderer gently but firmly to the dining table at meal time. I marvel at their patience. I now see that a whole team of people are performing the tasks that I once did all on my own—that in fact, it always was too much for just one caregiver.

And yet that is too often the case in this country. In the four years since Mom first began to show signs of dementia, and especially in the past two years as her symptoms progressed, I have taken time to educate myself about the disease and options for caregiving. I’ve shared these resources in previous newsletters and you’ll find more at the end of this post.

But while organizations like the Alzheimer’s Assocation and others offer tons of articles on the topic, nothing has hit home for me more than the posts I read on private facebook groups from people who are in the midst of it all and enduring far more than I am in their at-home caregiving. They seem to be most often women—daughters or wives—and often without support of siblings or other family members.

Their loved ones can be verbally or physically abusive—a cup of coffee or water tossed at them in a fury, throwing a tantrum when they don’t like a piece of clothing or they can’t find something, kicks and screams and pinches. As one woman wrote, “They are like wounded animals in the wild.” People share their tips about how they divert their loved ones when they are angry or upset or don’t get their way, much as one would do with a toddler.

Occasionally there are the carers who have loved ones like my Mom, sweet and patient, asking for very little. Her biggest demand is cranberry juice instead of water at dinner. I can’t fathom she would throw a tantrum if they didn’t bring her the juice but it is the way of this disease that we can’t know how it will progress. The unrelenting progression—the knowledge things will only get worse—explains the dread I feel when I enter her room and she is curled up in bed under the blanket, sleeping. I gently wake her and the thought comes unbidden: “Is this the day she won’t recognize me?”

I remember the man I spoke to one today at Mom’s facility. He was watching his wife from a distance as a CNA tried to get her to sit down for a meal, tears streaming down his face. “I’ve seen you with your mom,” he said. “You’re a good daughter.” I was touched that he had noticed, that he would take the time from the depths of his own grief to notice me and Mom.

“And you clearly love your wife very much,” I said. He nodded and told me how hard it had been to bring her here to live but he could no longer manage her care on his own, especially after he had a heart attack. On the way home from rehab, his wife, in the back seat, tried to open the unlocked door in the back seat to get out. He stopped the car in time to prevent a disaster, but it was part of a pattern of her trying constantly to leave the house and wander off. “She is like a toddler now. That is how I’ve been told to think of her,” he told me. “Some days she recognizes me. Some days, not.”

After his own health crisis, his grown children told him that they couldn’t risk losing both of their parents and stepped in to support the decision for the transfer of their mother to memory care. As I left that day, I noticed him sitting inside his car, tears pouring down his face. My heart hurt, just watching his pain.

In the four months Mom has been there I have watched his wife’s decline. On my initial visit to the facility, she was the one I noticed because she had such a wide and friendly smile. She seemed happy. Sitting with her husband in the living room, holding his hand. She would greet me like an old friend, asking me questions and making comments which didn’t quite make sense yet she seemed delighted with everything and everyone.

Now I see her either wandering the halls or siting vacantly at the dining table, no longer smiling or engaging with anyone. I haven’t run into her husband in quite some time. Maybe it finally became too unbearable to watch his wife disappear in this way, still in her physical body but everything that had connected them now gone.

Image by StockSnap from Pixabay

I understand. I feel a mixture of sorrow, guilt, and that aforementioned dread every time I visit Mom. I try very hard not to show any of that—not to my mom nor to the other residents. For them, I want to be the kind and loving presence that I would wish for in the same circumstances. When a gentleman sitting in the hallway sees me and says, “Where is the car? Are you bringing the car around?” I stop, smile and say, “Of course, John. I will do that very shortly.” And he seems satisfied with my answer.

Choosing a memory care facility

Mom is fortunate in that she had the financial means for us to secure her a private memory care facility—at least for the short term. In the medium to longer term our only option is to exhaust her own finances until she qualifies for Medicaid—in other words, she has to impoverish herself to receive any government support for her care. Medicare does not pay for assisted living. It does however cover the hospice care she receives as an added layer of care and that has made a difference. In my conversation with Ai-Jen Poo, we discussed the many ways in which the U.S. elder care system, such as it is, needs to improve—and affordable private care, at home or in a facility, is one of them.

The biggest tip I have if you are evaluating a memory care facility for a loved one with dementia is this: You don’t have to do it alone. Seek support. It is available. There are private agencies, some locally based, others with national offices like A Place for Mom, offering free advice and guidance on senior care options. (If your loved one is placed, they receive a commission from the facility).

The local agency I worked with, Senior Living Selections, was wonderful. The upbeat, kind woman who came to meet me and Mom over a year ago for the first time was full of advice on the types of care available—in-home care agencies, elder day care centers, assisted living facilities, how to find other resources like elder care attorneys or social workers, and practical information on the cost of services and what Medicaid and Medicare did and didn’t cover.

When it came time to find a place for Mom, this same woman took me on tours of several different places until I settled on the one that was small, felt more like a home and less like an institution and where the staff members seemed genuinely caring. I found only positive online reviews. Without the agency’s help, I wouldn’t have known where to begin. When you are a full-time caregiver, there is often little time or stamina left to spend hours online researching everything you need to know. So I highly recommend talking to someone whose business it is to know the ins and outs of senior care.

I know my Mom doesn’t love living at the facility and I understand. We both know it isn’t home in the ideal sense of the word, to live with your own family in a place of your own. Yet she has given me and my siblings the gift of her grace in accepting that this place is where she makes her home today. If we have widened the circle of love, it is mainly because my mother gathers the love toward her, allowing all of us to hold her as best we can.

Resources on Caregiving and Living with Dementia on Substack

I am discovering more newsletters on Substack devoted to the topic of caregiving and dementia and I am glad to recommend them to my readers. If you have some to add, let me know in the comments:

Carer Mentor

is a Substack written by Victoria Chin, who has been on a rollercoaster journey caring for both her parents. She is based in the UK but offers a wealth of insights, tools and learnings to help carers on their journey no matter where they live. I applaud her determination to dispell the myth that carers are superhuman. In this post in the Carer Mentor Journey about her own experience, she writes movingly about being in the “space of not knowing” and learning to embrace it.

Dementia, Vascular

by

Lydia Fluitt

writes from personal experience as well, as she has a grown son who has been diagnosed with vascular dementia. She offers a huge trove of informational articles, personal stories and resources. She created this newsletter specifically because she found too little publicly available information on dementia that wasn’t associated with Alzheimer’s dementia (my mother has vascular dementia, so I’m grateful for her specialization).

Dementia Connections

is compiled by Dementia Connections LLC, sharing monthly posts with expert advice, inspiring stories and developments in dementia care and research.

Dementia Differently

is written by Edye Hoffman, based in the UK, with the firm Dementia Compass, who offers useful perspectives not only for those caring with loved ones with dementia but also how you can take measures for your own health today that might shift the legacy of dementia. As Edye writes, “I want you to live long and wide,” which means building a bank of resources in our physical and emotional health that we can draw on later.

Questions for the comments: If your loved one has dementia or other severe illnesses requiring a high level of care, how have you weighed your options? What changes in our society would make the biggest difference for you or your loved one?

PAID SUBSCRIBERS: Find my voiceover of this article here on my podcast.

Three Songs for 3D

Divorce

“Dreams,” Fleetwood Mac

Now here you go again, you say you want your freedom
Well, who am I to keep you down?
It's only right that you should play the way you feel it
But listen carefully to the sound of your loneliness

Dementia

“Written on the Sky,” Max Richter

Destiny

“Ready,” Montaigne

I think I'm ready
I'm ready to begin again