28 Comments

"Assisted loving" -- what a beautiful term. In my experience, the assistance of special caregivers helps us children (and spouses and friends) be less depleted and able to love our people more fully. Assisted loving indeed. Thank you for sharing your experiences.

Expand full comment
author

Thank you Sara; I am so glad you can appreciate the term as well. We all need assisted loving. I am so often touched by the loving attention my mother gets at her ‘assisted loving’ facility.

Expand full comment

Amy, I’m curious about your mom’s level of dementia at the time you moved her, how you told her about the move, and what her reaction was. I’m dreading all of that. At the moment, my mom is still in a state of denial (despite the dementia being very obvious and progressing quickly) and would get so angry with us is we brought it up.

Expand full comment
author

@Dacy I am so sorry I overlooked this comment. I understand your dread. And your mom’s resistance especially if she’s in denial about her condition and the progression of her disease. I would say Mom was in a moderate to severe stage in that she had both fecal & urinary incontinence, balance issues & dependence on a walker which made her a fall risk, she required my help to shower, dress, prepare her food, and she was sleeping many more hours of the day, having lost interest in reading or crossword puzzles. While she recognized me & her loved ones (still does), conversation tired her and she could reply only briefly. Given her dependence on me as a caregiver and how that was affecting my physical and mental health I should have placed her earlier but I struggled with wanting to keep her in a home environment. Working full time at home & recently divorced & going through a lot emotionally, with little help from my sister as she worked full time in an office—it was a lot. As for talking to my mom & getting her acceptance, I told her the memory care was what her doctor recommended (which was true) and that people there were nurses & trained in memory care & could care for her 24-7. She was accepting: she is of a kind & sweet personality (a people pleaser like me😀) and she moved in with little beyond some confusion. I know she doesn’t really like it there, understandably: it’s not home. But she’s getting the care she needs & I have a life again. I hope this helps!

Expand full comment

It’s very helpful! Honestly I think if my mom was at the stage where she required that much help w daily tasks, she might not fight us on it too much.

Expand full comment
author

Yes, the early stages of dementia are hard to persuade an independent parent to go to assisted living especially if they seem to be coping with daily tasks. My mother was very upset by her memory lapses in the earlier stages, didn't understand why it was happening and insisted on continuing to live alone for quite some time, until my sister and knew that she had to move in with one of us. She did it reluctantly. I get it. I know that I will hate giving up my independence too. I wish the best for you in these hard conversations and decisions.

Expand full comment

Indeed, we all need communities of care outside of our immediate family - AKA Assisted Loving!

Expand full comment

Both of my parents have dementia and are in AL homes as well. I also found A Place For Mom to be incredibly helpful in my initial search. The one caveat being they do not work with communities that will accept medicaid, so if you aren't prepared to pay out of pocket indefinitely, it won't be the best choice. I have found paying for an eldercare consultant to be incredibly worth it. As you say, just don't do it alone!

Expand full comment
author

And my deep empathy to you regarding your parents 💗

Expand full comment
author

I would agree that the elder care consultants are a wonderful resource for families. I was so appreciative of the local agency that helped me.

Expand full comment

The love you have for your mom (and humanity) shines throughout this piece. Assisted loving - don’t we all need this!?!! Especially as we age and feel our autonomy wane. Thank you for sharing this experience with us here, Amy. 🫶

Expand full comment
author

Allison, I appreciate you and thank you for those kind words. You are right in that we all need "assisted loving." I am building my community for that very reason--the family I was born into and the family of friends and soul sisters who stand beside me in this life. We will assist each other through it all.

Expand full comment
Jan 17Liked by Amy Brown

Amy, remarkable, thorough, compassionate, I can feel your heart in your sharing, and I appreciate how willing you are to be vulnerable and share how you have experienced this part of your journey with your mother. And blessings to you for the copious resources offered on this topic of dementia and memory care units. Again, my mother died in a memory care unit at 96 years old… Sadly, on the other side of the country for me.

keep on keeping on… I’m sending love light and strength to both of you and your family as you walk this path together.🙏❤️

Expand full comment
author

V, thanks for seeing me and witnessing me. I appreciate you! I am glad that the essay touched you in the way I intended. I am sorry your mother had to endure dementia as well, and so far away from you. Thank you for the love, light and strength!

Expand full comment

Yes, it was always too much for one caregiver. Now at least you can be the daughter, and visit with your mom, and not try to be all the other things. Getting old is so hard, even without dementia, and dementia adds many more levels of difficulty...I hope you're feeling comfortable with the decision!

Expand full comment
author

Thank you Sarah for this kind comment. I am working on feeling comfortable with the decision. I would love to have Mom home with me. But then I remember the isolation I felt during the year I was her full-time caregiver, the depression I was sinking into, the frustration at my physical entrapment, the hours that caregiving required and the stress of trying to work at the same time, and the guilt for feeling all of that--and I know I made the right decision for mom and me. It is not easy for her or for me. She knows very well she is is a "nursing home" as she describes it. Yet I know a part of her understands why this is so and when I see her, I feel nothing but love toward me, not resentment. I am the one who struggles with it the most. But I am getting there, making my peace with the decision.

Expand full comment

Thank you for sharing your experience -- it's not easy to do, but there are so many who can benefit from your "assisted loving" perspective. We desperately need a caregiving revolution in the U.S. -- one that abolishes the stigma of seeking help because you're right, it is far too much for one person to care for a loved one with dementia, and one that establishes caregiving as a noble, generously paid profession instead of a bottom-rung job. May your journey with your mother continue to be as gentle and sweet as it can possibly be, until it reaches a peaceful end.

Expand full comment
author

Jan, thank you for this thoughtful and kind note. I agree with you completely about the need for a caregiving revolution, which is why I was so glad to be able to share with my readers some weeks ago the experience and wisdom and vision of the tireless advocate Ai-jen Poo and her wonderful book Age of Dignity. It doesn't have to be this way. Thank you for recognizing that, and I appreciate your lovely wish for the journey I am on with Mom. Like you, I am a novelist and it is through writing I have found the most healing way to connect with myself through all of life's challenges. I have written middle-grade fiction but didn't succeed in publishing that novel (despite having an agent for it) and now, with my latest work of contemporary adult fiction, I hope to become a very late blooming debut author. Looking forward to exploring your Substack!

Expand full comment

Here's to us late bloomers! I honestly believe we're the pointy end of a spear, and there will be many more of us as we pierce the armor of ageism (how's that for torturing a metaphor?). Cheers to you and your writing!

Expand full comment
author

I love the metaphor Jan! Late bloomers united for the fight of our lifetime—not least dignity.

Expand full comment

Oh Amy! 🥺 Thank you for this generous, vulnerable article about your experience. Tennis ball in my throat and blurry eyes. BIG empathetic hugs. I wish we could get some armchairs and just 'pour-out' (big mug of tea or wine at the ready)...everything! May I offer that you are still caregiving, and it's still emotionally draining, in my opinion? There is no right or wrong, better or worse comparisons to be made here. Dementia is one of the most heart-wrenching conditions because you lose the person before they physically pass. I know we were grieving for the Dad we knew, four years before he passed.

Thank you for sharing my website details and supporting my efforts, SO glad you're on this mission with me! For any Carers reading this, this poem may help you to not feel so alone. https://www.carermentor.com/p/if-i-could

Expand full comment
author

Victoria, thanks for this heartfelt and supportive comment. I feel your hug and that virtual cup of tea and its comfort. Thank you for the reminder that even if Mom no longer lives with me, I am still caregiving and it still carries an emotional weight. I wish for you, for your Dad and for me with my Mom, that dementia hadn't come to steal them away from us in its cruel way. All we can do is love them the best we can. I was so happy to come across your newsletter and website and was glad to share with my readers. Caregiving can be so isolating. We need to form an ever larger community to care for one another. And I love your poem!

Expand full comment

Amy, as Ai-jen Poos likes to say it's a collective responsibility to support each other in caring with dignity, and I interpret that for both the loved one AND the carer. I hear the nuanced guilt with the 'good daughter' questions; amongst carers, we all know ANY share, part or whole, of caring for someone, is STILL caring...I wish the responsibility (for some seen as a burden) could be carried by more supporters. A larger care team per person ;-)

Expand full comment
author

I agree! And I love Ai-Jen’s vision for that community of care. As my friends & I age in our 60s, some of us without partners or children or with children who live far away, we are talking about how we will build these communities of care. It’s not easy in our society.

Expand full comment
author

Thank you for your kinds words about the article and for showing such support and for your own valuable contribution to all the caregivers out there. I would love that cup of tea, we will just have to make it virtual!

Expand full comment
Jan 16·edited Jan 16Liked by Amy Brown

To quote Brené Brown 'Vulnerability... is our greatest measure of courage.' Sharing our vulnerabilities as Carers - all the "uncertainty, risk, and emotional exposure." we face, and will face in the future, will hopefully not only prime others to the challenges but also CONNECT us all in this time when we most need it!

Expand full comment
author

I love Brene Brown and also believe in the connective tissue of vulnerability. Thank you for being here, Victoria. I know you understand.

Expand full comment