A year ago a yoga colleague, Rhia, sent an email that she had recommended me to her friend Melissa because Melissa was hosting a one day retreat for caregivers of Alzheimer’s’ patients and knew my mom had had the disease, she thought I could be of help.
I received the email from Melissa and thought “thanks but no thanks” “been there done that”, I appreciated what she was doing, it was useful to others. Melissa asked if we could talk a few minutes anyway.
“Sure” I responded, I didn’t want to be rude.
Alzheimer’s as a Disease was Bittersweet
We talked a few minutes and I told her that to me Alzheimer’s as a disease was bittersweet. If you are going to die of something it is not the worst thing, it’s also really rough for all involved. I don’t know what I would pick if I had to pick a disease to die from, not sure if I would choose Alzheimer’s. In my mom’s case we had a few years to absorb the idea, to try to make arrangements not knowing exactly what to expect, we could grieve during the process, and prepare for eventual death. Melissa pressed the issue, really wanting me to be there and something about her voice compelled me.
Eight women showed up. The first thing that I did was introduce myself and share my struggle.
“My mom had Alzheimer’s for seven years, two years of solid home care and 2.5 years of nursing home care. It was hellacious before we had help and even afterwards it was really hard. I don’t see how any of you manage without help. Part of me was really relieved when she died.”
I could see recognition and relief in their faces, some had tears in their eyes. I knew we had mutual shared experiences, had felt the same fears, the same outrage, the same despair, same exhaustion to some degree even though I was through it and they were in the middle, beginning or at the end.
And then the women, (the group was all women) began to talk. And the healing happened through the sharing.
“Thank you for saying that, I’m an only child and I have been feeling so much guilt about putting my dad in a home, I couldn’t take care of my mom and dad anymore, it was too much, and he died soon after.”
Other women nodded their heads.
“My husband pulls all his socks out of his dresser drawer and throws them on the floor and I spend so much time making it neat and tidy so it will be easier for him, I’m exhausted because my house is a mess and I am working all the time trying to clean it up”.
As a society we aren’t suppose to voice our anger, we aren’t suppose to share that we aren’t saints…
There were stories of feeling guilty that they didn’t have the disease, didn’t have the fear that they saw in their loved ones eyes, there were stories about the exhaustion spending all the time caring for someone else. “Who was caring for me? Who was cooking for me? Buying my groceries?” There was anger and shame about feeling angry towards their mom or spouse. As a society we aren’t suppose to voice our anger, we aren’t suppose to share that we aren’t saints… that we hate we are in this situation and that we hate our loved one had to go through this…. They weren’t used to someone acknowledging,
“Part of me wants the person I love to die so my life might be a little easier. I’ve done my time, enough already.”
My dad studied medicine and grew up in Alabama, I remember he would share the story of doctors in the South, “You always knew when someone was soon going to die from “old age” because a family member would come in for an appointment and state “something’s got to be done.”
That feeling is universal and isn’t just from the “old days” or from the South. What went unsaid but implied was “something’s got to be done” because I can’t do anything anymore. I’m spent; so people died from bedsores, or pneumonia or any number of things, you just get exhausted. Care giving for someone sick is exhausting.
So the struggle is necessary. My struggle helped me help these women recognize that their feelings were valid, that they were not alone. All the emotions they were experiencing were normal. In declaring the normalcy shame and guilt were lessened. Sharing the struggle brought relief.
Don’t resist the struggle until it is then time to flip.
Then resist the struggle and let go.
There is a time when you need to resist the struggle.
The wife who decided to give herself permission to not worry about socks being tidy, clothes being folded…
A moment comes when you just say no. The woman who put her father in the home so she could focus on her mom. The wife who decided to give herself permission to not worry about socks being tidy, clothes being folded, what her husband looked like no longer mattered as long as he was clean and dry.
Alzheimer’s caregivers frequently report experiencing high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you. If you experience signs of stress on a regular basis, consult your doctor. Ignoring symptoms can cause your physical and mental health to decline.
Community Resources are Available
Adult day programs, in-home assistance, visiting nurses and meal delivery are just some of the services that can help you manage daily tasks. Use our online Community Resource Finder or contact your local Alzheimer’s Association chapter for assistance in finding Alzheimer’s care resources in your community. Use Alzheimer’s Navigator, our free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.
Dealing with Alzheimer’s is hard. Getting in touch with us easy! Our Alzheimer’s HELPline is available all day, everyday, in over 200 languages at 800.272.3900.
About the Author
Maria is an educator, facilitator, workshop leader, teacher and messenger. She is interested in helping others become more empowered in their own lives. Living for themselves and putting themselves first; not in a selfish way, but in a real, authentic, powerful way where they can stretch their spirit so who they are and how they live/ work/love is congruent.
She is interested in beauty, inspiration and creating balance. Whether that is helping you balance a perception, discover your talents, complete a project, or find more ease and less stress.
*Republished with author’s permission: www.maria-merrill.com/