Caregiver Honor Roll: Mary Story
Mary Story cares for her husband, Steve, in their home in the Monterey Bay area of California, where they recently moved to be closer to their 12 grandchildren. They've been married for 29 years. "My husband was diagnosed two weeks after his 69th birthday, and he's changed so much in the last eight months I can't believe it!" Mary says. "I'm lucky because he has always been and still is kind and calm. That being said, he makes me annoyed at times by not participating in life in the same ways. Then I have to remember it's the disease, not him."
Biggest caregiving challenges
Often caregivers don't take the time to care for themselves. "My biggest challenge as a caregiver is making time for me and not feeling guilty about taking it!" Mary says.
Being a self-described "organized, planning type," Mary made a list. "It got revised, but what I came up with was Patience, Attitude (mine), Tolerance, Humor -- PATH," she says. "I use this when I'm feeling really stressed or frustrated. I can tell myself, 'OK, girl, get back on the PATH!' It helps."
Mary admits that asking for help from others has been a difficult part of her caregiving journey. She fears for her own health and knows that getting help can alleviate lots of stress. "Asking for help from others has been really hard for me," she says. "I want to 'fix' things for people, make it better. I can't fix this."
Like many caregivers assisting loved ones with Alzheimer's, Mary began her journey by overloading herself with information. "I read everything I could find on the Internet. It scared me! But I realized I would need tools to deal with this," she says. "I started out believing that if I knew what this disease was about I could control it -- ha!"
Soon, Mary started feeling the anticipatory grief that coincides with caregiving for the ongoing and incurable nature of Alzheimer's disease. She turned to a caregiver organization in her community for support. "They steered me to a counselor who explained that what I was feeling (and still feel) is grief," she says. "I'm losing my best friend in little bits and pieces. But unlike a death, there is no closure for us caregivers yet. I watch my spouse drift away from me, and I'm powerless to stop it. That is so painful! However, I am grateful that my husband is still the sweet, funny guy he has always been."
A member of Caring.com since May 2011, Mary participates in the online support groups included with our free Steps & Stages resource for Alzheimer's caregiving. An active contributor in her Stage Group, Mary asks for and offers advice, comforting fellow caregivers daily. "I am so blessed to have found Caring.com!" she says. "I discovered a whole world of other caregivers that have become like my extended family. There's always someone there to cheer you on, listen to you rant, give advice, be your friend." Being in a Stage Group particularly helps to reverse the loneliness that can occur with in-home caregiving. "It helps so much to know that you aren't alone in this. My fellow caregivers get it," says Mary, "They know what it's like, even though your family or friends really don't."
Tips for other caregivers
Here are three tips that Mary shares to encourage other caregivers:
Stay connected. Mary says, "Don't let your situation isolate you from friends and family. Set up a calendar and ask people to come by to visit or go for a walk with your loved one -- whatever time and activity they can manage."
Love yourself. Caregiving introduces a roller coaster of emotions for the caregiver. Mary has learned to forgive herself. "Know that you have a very hard job and you will make mistakes, but it's OK," she says. "You are human!"
Keep your sense of humor! Mary lights up the Stage Group many times a week with her humorous comments, such as she did in this recent post: "I have some good news! My husband (who, since we've been together, has always been clean-shaven) grew a beard and mustache when he was diagnosed with Alzheimer's. Why? Who knows! After eight months of this thing on his beautiful face (and me having to trim it), he decided to shave it all off. He looks ten years younger, and I feel like I got my husband back . . . well, sort of. He still can't remember stuff, but it's a victory. Yay!"
Favorite song, book, or movie shared with loved one
Mary fondly recalls her first dance with Steve to the song "Islands in the Stream." "It's a love song that talks about finding peace when you find the other person. We found that tender love and peace when we found each other," she says. "Sometimes it feels like we are islands in a stream, with events and life flowing around us. We rely on each other, just like they sing in the song. It still brings back such great memories when we hear it!"
We hope you'll share your supportive comments with Mary below, or send her a virtual hug or prayer via her Caring.com profile.
That I'm not alone in this process of taking care of my Husband. That it is okay to get upset cause I need that to let off steam so I can take care of my Husband in the loving manner I need to.
Especially the part about keeping our sense of humour. That is a big struggle for me.
Thank you Mary, for sharing your life story. I feel like there is so much support and caring on the website. Everyone understands what it is like to have a loved one with this awful disease.
Thanks for discussing your anticipatory grief that you're experiencing. That is what has been most difficult for me. Its obvious the care and love you have for your husband and I could almost insert my name instead of yours and it would be my story. My husband was diagnose at age 52, 7 years ago. He's totally a different person, but as you stated is still kind and funny. That helps ME. I get amused at some of the things he does and am looking forward to retiring soon to spend as much time with him as possible. Godspeed to you and all care givers.
Mary, thank you for sharing your story. I look forward every day for my sisters on caring.com for there support. Actually I rely on them for a lot of support wheather it's a laugh or for a cry. May God Bless in your endevers HUGS
Mary thank you for sharing and also I thank all my on line sisters , angels in my stage group
Mary, Thank you for sharing your story. I was very involved with my stage group, but recently I've been very overwhelmed by the progress of the disease in my stepdad andhow that and my own illnesses have been affecting my life. This has led to me avoiding much to do with Alzheimers(with the exception of participating in my 1st Alz. Walk). That changes starting today. THANKS!!!!!
What a lovely story! Like Mary, I rely on my on-line sisters, angels, in my stage group! I don't discuss my/our situation with his brother and sisters- in -law anymore or my children. Mary, thank you for sharing. And you also take care! Aloha!