loss – Page 2 – My Alzheimer's Story

Care Partnering, Death & Dying, Life & Living, Love, Memories

dead mom talking full of grief, wisdom and tenderness

May 15, 2016May 15, 2016 My Alzheimer's Story

Rachel Matlow’s short audio documentary “Dead Mom Talking” is amongst the most beautiful conversations I’ve ever heard: raw, honest, touching, tender, funny, and filled with love, grief, wisdom, magic, dignity and longing.

I began weeping before I even started listening, and I wept the whole way through the fantastic fifteen-minute piece. If you choose to play it, I highly recommend arming yourself with tissues beforehand.

The concept behind the work, first aired on CBC’s Sunday Edition with Michael Enright on Mother’s Day 2016, is extraordinary.

Matlow, a producer at CBC’s cultural radio show Q, recorded conversations between herself and her dying mother over a seven-week period in 2015.

A little less than a year after Elaine’s death, and based on this instruction: “if you want to talk to me when I’m dead, go to the bench,” Rachel created what I can only describe as a stunning work of audio art from the recordings.

Listen:

Despite my tears, I was filled with a sense of hope and deep human connection after listening to Matlow’s documentary. I strongly believe we are able to feel the presence of those we love after they are gone, and maybe even speak to them on benches, or bridges, or when surrounded by the amazing beauty of nature.

I take comfort in that.

Note: audio and video recordings can also be powerful care partnering tools; I talk more about the why’s and how’s of that here.

Helpful resources

Here are some excellent resources on grief and grieving for dementia care partners:

Grief, loss and bereavement: a comprehensive Alzheimer’s Society piece covering various aspects of the grieving process from several perspectives; includes a downloadable PDF.

Give grief space to breathe: a free one-hour webinar with Mike Good of Together in This and grief coach Kim Adams; includes an emotional awareness worksheet as well as downloadable audio and PDF.

Open discussion on grief: Mike and I and grief coach Kim Adams share our thoughts and those of listeners in a half hour chat to help you cope with grief. Join us the first Tuesday of each month for similar thought-provoking and helpful conversations.

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Copyright: photosky99 / 123RF Stock Photo

Challenges & Solutions, Family, Life & Living, Tips, tools & skills

what to say to family members who ‘can’t bear to see mom or dad this way’

December 5, 2015November 16, 2017 My Alzheimer's Story

The comment wasn’t a comment, it was a plea:

“Please help me with the ‘right’ words to say to my sister,” Nancy wrote. “She won’t visit our dad or help in his care because she says she just can’t bear to see him this way and she wants to remember him how he was.”

Countless care partners find themselves in the same situation as Nancy. It’s frustrating, painful, and stressful when you don’t getting the support you need from others. But we can’t control their thoughts and actions.

My reply to Nancy came from the heart. I responded:

Everyone deals with the changes dementia produces in someone they love in different ways. Some people really can’t bear to see other people change, whatever the changes might be; some people want things to remain the same even when that’s impossible. Some people cannot abide suffering. I understand that–having to watch loved ones suffer is torture for me. On the other hand, some people don’t have an empathetic, sympathetic, or compassionate bone in their bodies. I’ve experienced the tragedy of that firsthand. So have thousands of other care partners. The only person we have control over is ourself, and sometimes we feel we don’t even have that.

If I found myself in this situation, I might try something like this:

“I understand how you feel. It’s really hard to watch Dad decline and not be able to do the things he used to do, or to relate to me in the same way he used to. I feel sad Dad is ill. Really sad. But I have found a way to see him as he is now from a new perspective. Not as someone less than who he used to be, but as someone different than he was in the past.

I still see his core and spirit, which to me remain the same. I’m happy and grateful I can still connect with him and keep him company at this time when I believe he really needs me. I think about what he would do if I were sick, or facing a challenge, or whatever. And even though it’s hard, I want to hold his hand because I think it’s the right thing to do and because I love him. I think about what I would want if I were in his place and I try to do things I believe will bring him pleasure and joy.

I understand you don’t feel the same way I do, and for you it’s too painful. My wish would be that you would try to see him in a different way, as the person he used to be and still is at the core of his being. But I understand if you’re not able to do that. Just because I wish it, doesn’t mean it will be so.

I remember Dad as a vital, engaged, dynamic person full of passion and energy. And I still se those qualities in him despite this disease. I want to celebrate who he is right now as well as the person he was yesterday, last year, 10 years ago and even further back.

I don’t believe this disease can take away who Dad is. I value him as he is, just as I also cherish the memories of who he was and the relationship we had. I don’t believe Dad will be gone until he dies. I understand it may be too painful for you and I’m sorry for your pain.”

That’s what I would truly feel in my heart, and that’s what I would say. I believe we have to speak our truth, and then detach from the outcome, all of which is easier said than done.

“That’s my truth, Nancy,” I answered. “You have to find your own. When you do and when you speak it, you will be free to joyfully do what you must for your dad and you won’t waste energy trying to force your sister to behave in the way you think she should. What is right for you may not be right for her.”

I closed with a qualifying note: “It’s a whole other kettle of fish if your sister has legal responsibility for your dad and is neglecting his care in some way. If that were the case, a completely different course of action would be required.”

All of this said, an equally valid and necessary response in these and other situations when all the right things have been tried and failed might be to tell siblings, family members and others to “Stick it!”, forget about them and move on.

You gotta do what you gotta do.

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Advocacy, Care Partnering, Life & Living

my mom still counts and she deserves better

August 13, 2015May 31, 2018 My Alzheimer's Story

August 13, 2015: About a year ago, on July 29, 2014, to be specific, I wrote a post about the fact that my Mom counts. I said this among other things:

“…she surprises me every day with what she can do, and how resourceful and resilient she still is even in the late stages of Alzheimer’s disease. She inspires me with her strength, courage and determination. The sheer power of her will and the force of her personality are something to behold. We have struggled through this life together and apart and I see her (and myself) more clearly each day. I appreciate the time we have together now, heart wrenching though it may be.”

A year later, Mom still inspires me despite her decline in the capacities most “normal” people think count most. But I’ve learned there are a whole slew of other things that also count – maybe even more than everything else. Things like deep connection. Things like looking death and dementia straight in the eye. Things like taking a single step then another and another, reaching out and touching a shaking hand, making tea for two and eating wafer-thin ginger snap cookies.

If Mom is awake, which she mostly is not during our restricted visits, she counts to a rhythmic three when I help her to stand up. Sometime she can take a few steps, each one of which is like swimming against the tide or climbing her own Kilimanjaro. Each step counts.

Today, I sat by Mom’s side for two hours as she slept. She and I are at the mercy of forces about which we can do nothing but bide our time. One thing I count on is that everyone’s time runs out sooner or later. So it will be with us and them. Maybe Mom was was counting sheep as she slept today. Maybe she was counting her blessings, as I was mine. I know one thing for sure: neither of us was counting our pennies because you can’t take ’em with you go and if you can’t use ’em to do good and create happiness here and now then what’s the point?

Another thing I know for sure is Mom still counts. We both do. So do the millions of people worldwide who have dementia. So do the millions more who will have it tomorrow and the next day and the one after that. So do the millions of other people who are care partners now and who will be care partners in the future alongside the millions of people living with dementia. It’s the hardest thing any one of us/them will ever do.

We all count. And we deserve better.

Mom died two years and four days after I wrote this post.

https://myalzheimersstory.com/2015/03/01/life-is-a-death-sentence/

https://myalzheimersstory.com/2014/06/03/a-magical-musical-alzheimers-gift/

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Challenges & Solutions, Life & Living, Love, Videos

what confusion felt like to my mom in the later stage alzheimer

October 23, 2014January 22, 2021 My Alzheimer's Story

October 23, 2014: Today I had reason to revisit a video I’d made in which Mom talks about how she feels about her state of mind. I don’t have words for the way in which I’m inspired by her courage and determination, particularly in view of the daily challenges she faces. She is one amazing woman walking one daunting path home one step at a time. I’m in awe of her courage every single day, and grateful for the time we spend together. The clip below is also part of a longer conversation we had on August 19, 2014, which included how to keep the faith when you are going through a rust patch.

Living with dementia is a roller coaster, just like the rest of life. Mom and I have many moments of joy and happiness to balance these more difficult ones. Here are three examples to lift your spirit and put a smile on your face:

To better understand what it feels like to live with dementia of the Alzheimer’s type in a long-term care facility, see this series of stories told in the voice of Alzheimer’s Annie.

Mom died on August 17, 2016.