Has anything good come from Alzheimers?
Last month, a question was posed on the Alzconnected forum asking caregivers if they felt anything good had come from dementia.
I found the responses so moving, I asked those who answered if I could share them with you all.
From Chris; currently caregiver to her mother, previously caregiver to her mother-in-law that has since passed:
"I learned more about Mom's life than I might have otherwise. I learned who I want to be when I grow up (Mom), and get dementia (again, Mom). I have learned an incredible amount from this forum, and better know how I should prepare for the near future..."
And in regards to caring for her mother-in-law:
"I was a full member of the 4-woman team who did the care management and the doctor appointments, and the visiting twice a week, and the general "keeping Granny at her home" day-to-day life. I learned better what I already knew-- that I married into the best possible family."
From Bamboo2; sharing the caregiving load with her sister for their father:
"Our dad was diagnosed with dementia two years ago, and I developed a softer spot for him. He became more gentle, and I became more patient and compassionate...When he couldn't remember a word, and I could fill it in for him, I was his rock star...I started to call him every night, and he even wrote in a Christmas card how much those nightly calls meant to him. He has expressed more love and gratitude in the past two years than in all the other years combined.
Another really positive thing is that I've become very close to my sister...My sis and I have really leaned on each other these past two years, and I'm so grateful for her love and support."
From GothicGremlin; caregiver to her sister with early onset dementia:
"It's really tough because my sister was only in her later 50s when she was diagnosed with early onset...And now, as she slides into early stage 6, seeing the additional confusion and general decline set in is really hard to take. But, yeah, I think there were some good things that came of it too.
Our extended family has rallied around her, which has been nice to see
I've become more patient and my problem solving skills are through the roof
We're very different from each other, but I've discovered that we both have reserves of strength I never knew existed
We've always had a good relationship, but it's gotten better over the time since her diagnosis. It means that I'll be extra unhappy when she forgets who I am but...I'm much better at living in the moment than I have been in the past."
From Lady Texan; caregiver to her husband with early onset Alzheimer's:
"...many things I felt were important to me are not important anymore. They are merely "things". What is important to me now is:
Appreciating the limited time I have with my husband.
Loving him and letting him know he is loved.
Ensuring he is receiving the care he needs.
Being gentle with myself.
I am stronger than I was. I am more patient than I was. I am more forgiving of myself now when I make mistakes...I have learned to ask for help without thinking I am weak. I have learned to accept help with grace. These are good things that likely would not have happened without my husband's illness. What a shame it took this crappy illness to change my outlook on life."
From Beachfan; caregiver to her husband with Alzheimer's:
"Today is our youngest granddaughter's 6th birthday. She has never known her "pop" without Alzheimers. We live on our daughter's property and see "Allie" every day...she has the most uncanny empathy and a loving, caring nature that astounds me. She races down here every morning to "fix" pop's breakfast before school, she feeds him cookies and candy ("don't bite my finger, pop"), she loves to "lax" on the sofa and read to pop, she brushes his hair and leads him from point A to point B with care.
She is discouraged that he is unable to understand what she tells him and was absolutely blown away the other day when she asked, "Do you love me, Pop?" Yes. "Am I your best friend, Pop?" Yes. There are some hidden gems in this disease."
And finally the author of the question posted his own answer.
From Michael Ellenbogen: living with dementia while a global advocate for people with Alzheimer's and other dementias:
"This is some of the good that came from it for me.
I got the opportunity to travel so much sooner then I ever thought I would and made so many memorable memories for my wife and I that she talks about all the time. It real made her happy.
I have gotten to meet the best minds in the world related to dementia
I have been a pioneer and will leave a lasting impression for what I have done for this disease and others.
I am more patient to others in need or who struggle with mental issues.
I was able to do a bucket list and still be around - Ran out of things to do
I accomplished the most exciting thing in my life by spending two day in Geneva with all of the ambassadors of the world at the first dementia conference at WHO [World Health Organization]. I had my own seat and mic and tread like royalty like the others - Does not get any better than that and not sure I can ever top that one"
Others wrote that caring for parents who had provided dysfunctional childhoods followed by painful adult relationships found that they developed "new relationship[s]" with their former tormentors that provided peace and healing to them both.
One caregiver wife noted that she and her daughter had become much closer as her husband's dementia progressed.
Another daughter could only find one positive in her caregiver journey with her dementia mom and that was becoming a storyteller - now retelling her mother the stories of childhood that her mother had told her.
I have written before about the benefits I have gotten from Mom's dementia: it got me back home where I belong, it brought my sister and I back from a hateful abyss (now we just hover over a slightly annoyed one), it allowed me to redeem myself for past end-of-life cowardice to others, it gave me the opportunity to write/create this blog, as well as the increased patience and compassion, and many of the other "hidden gems", professed above.
I welcome your answer to the question if you'd like to add them in the comments below. And if you are bereft of any good in your caregiver journey thus far, I have been there. I will be there again. I'd hazard a guess that all those who responded positively have been there too. It is just as valid of an answer and may hold a bit of therapeutic value to vomit it up to a group of strangers who are also weary, fellow soldiers in this war.
It was an honor to not "create" this post, to instead share what my fellow caregivers are thinking and feeling in their own words. Thank you to everyone who gave their permission for reprint.
P.S. You can read the full forum thread here.