I had the good fortune of meeting former family caregiver Margaret Sheehan quite serendipitously. She happened to attend a Caregiver Workshop at AGE of Central Texas in Austin and left a copy of her new book with Rob Faubion, Marketing and Outreach Manager. He was nice enough (and clever enough to see a great opportunity to bring a bit of inspiration and support to the family caregivers in Caregiving Cafe’s support group) to tell me about her book. I contacted Margaret and we met to discuss her caregiving experience, along with her sister Helen and her husband John. All 3 had worked together to support Margaret’s and Helen’s parents – a lovely symphony of efforts that would be ideal to see in every family.
Thank you, Margaret, for sharing your insights with us. I hope family caregivers put her tips to good use, as they will help to make the caregiving path more bearable. She is living proof that they worked!
For caregiving support, information, resources and caregiver workshops in the greater Austin area, please contact AGE of Central Texas.
How Hard Could It Be? A Caregiver’s Story by Margaret Sheehan
Your story – how did caregiving begin? How long did you do it? What conditions were you managing?
PART 1: Caregiving began with a medical emergency, so there was no advance preparation or training. Mom had a 50/50 chance of surviving serious complications from a standard surgical procedure to remove a benign brain tumor from behind the base of her nose. Inevitable swelling of the brain made the doctor question whether she would survive or be herself after recovery. No family members lived close to my parents at their retirement home. I took a plane to be with Dad and spent six weeks helping him with driving, paperwork, shopping, emotional support and providing updates to family.
In addition, I buffered Mom’s experience in the hospital. After all the tubes had been removed Mom still needed help with eating, staying oriented to the present and minimizing her concerns about Dad. After my sister was able to stay longer with our parents I returned home. My sister stayed another six weeks helping them transition from hospital care to home health care.
Medical personnel ultimately considered Mom a little miracle because she eventually recovered her speech, her personality, and her ability to walk. Mom had no memory of my time with her. After I returned home I wrote her a detailed letter telling her all about it.
PART 2: Three years later I relocated close to my parents and orbited them like a planet. For sixteen years I lived separately but near to them. That caregiving experience gradually evolved from mutual care to an uneven role where my parents saw me as their primary caregiver responsible for increased decision-making and oversight of their care. Then for four more years they lived with me and I became their full-time primary caregiver with help from aides and finally Hospice until their deaths at ages 93 and 95.
Dad suffered TIAs, small cumulative strokes that made speech difficult and left him with mild dementia and sundowner’s syndrome (at night he experienced another world and became more active). Dad also had a catheter for about three years, a tendency toward constipation, age-related diabetes, failing eyesight, and minor difficulty walking due to childhood polio.
Mom was surprisingly healthy during those years, although in the past she’d had a mastectomy for breast cancer. Her brain surgery only left her with a tendency to blurt out comments she might have self-screened before the procedure. Overall she remained sweet, friendly and reserved. She had bunion surgery, a minor procedure on her eyelids and two problems with her heart that made surgery impractical.
She often worked easy crossword puzzles until they became too difficult as her sight weakened. But she was able to enjoy television – old-time shows that she never minded repeating. She had normal age-related memory lapses such as increased difficulty identifying people on the Christmas mailing list. As her memory diminished she grew quieter and smiled rather than partake in conversations around her.
Overall, I think they both were comfortable and happy. They weren’t thrilled with aging but they did so with grace. For example, at the appropriate time they each made the decision on their own to stop driving.
How did you approach this new role?
I jumped in, ready or not, here I come! How hard could it be? I intended to learn as I went. At the beginning of the book I described a time when I accidentally ended up lying on the floor with Dad sitting, squatting on top of me, straddling me. I felt that after we resolved that fiasco we could deal with anything, come what may.
What 3 things helped you cope/manage caregiving?
Trust in God, family, and good health.
What would you say to new and to existing caregivers now?
Take care of yourselves. Make that a priority so you can be effective with what you are trying to do. Seek the professional help that you need. And communicate, communicate, communicate – with concerned others and with the person for whom you are caring. Never presume that because you go through something together you each have the same understanding of what is happening.
How do you cope with loss during and after caregiving?
During caregiving I coped with loss through humor. We laughed a lot. It gave us the illusion of control, and acceptance about our lack of control.
After caregiving it was a comfort to me to have done all that I could. Toward the end of my book I described taking my unfinished business after my parents’ deaths to my church’s sacrament of reconciliation. I confessed my sense of fault over what I had done and what I had failed to do. For my penance that blessed elderly visiting priest with an Irish brogue told me to return to my pew and to say six times, “All is forgiven.” I hope to give a similar sense of peace to people dealing with caregiving decisions.
Now, I still talk to my parents. I know they weren’t comfortable with their disabilities in their final years. I’m grateful they were able to have the last sacrament. I’m glad to think of them as having peace.
How did you deal with the changes in roles and relationships with your parents?
I just accepted the gradual changes that occurred. I never challenged, deflected, or questioned this. If they could have acted differently, I know they would have.
One day my Mom greeted me at their door as I was in the habit of visiting them after work. She said, “Daddy threw up blood in his (TV) chair and is lying down in the bedroom.” In the past Mom would have called the doctor rather than wait for me. After that I knew I could not take for granted what they would do.
Did you seek and accept support from family, friends and community? Did you have to wrestle with the idea that you “should” do things on your own?
Family did not live close, but when they visited I tried to point them to things that they could do. This was good for all of us. Caregivers have to let go of trying to do everything, especially when others want to be involved too. But people who don’t live close usually arrive two steps behind no matter how well you’ve tried to communicate with them before their visit. They have to catch themselves up and may need time to do so. They will probably need your help to know what to do when they’re ready.
Also I asked one of my brothers to help me fund a regular housecleaner for our parents and he was glad to do so. Later my parents attempted to live in an independent/assisted living facility. It did not work out for them and I discussed that in my book — but that’s well worth considering.
How did your parents cope and manage their role as patient & caree? What did you do to support them emotionally?
They worried about burdening me. From the beginning we acknowledged that we were supporting each other. I had just gone through a divorce when I moved near to them.
For many years I sought out activities that I enjoyed such as career studies, involvement in Community Theater, church choir and for awhile singing voice lessons. I kept myself happy so they worried less about me.
To support them emotionally I just kept up with them and affirmed what they could and could not do. I accepted them as they were. I offered another pair of eyes and helped them to set boundaries. For example, we gradually limited out-of-state travel to care for my father’s older sister. We helped settle her into a local nursing home.
What prompted you to write a book and how did you get started?
I had started journaling during the years when Dad and I had precious conversations in the middle of the night due to his sundowner’s syndrome. At the time I did not want to forget those talks. After sharing those notes with family members, I expanded them into a book.
I wrote the book because I thought I could help others by talking about caregiving experiences that took me by surprise. Many aspects of caregiving had taken me by surprise! I thought maybe I could help others feel better prepared for caregiving than I had been.
For me personally, the book project also became a healthy avenue for closure. It became a tribute to my parents.
What did you do to take care of yourself?
I got as much sleep as I could. I let other family members help me as much as they were comfortable. I laughed often. I used myself as a barometer and checked anger to make sure it didn’t get out of hand. When I found myself getting angry at family or my parents, it was a clue that I needed to make a change – usually to seek another level of professional help.
What do you think would be an effective vehicle to spread information about caregiving resources?
Your Caregiving Café is a wonderful service on the internet. I am a dinosaur about this media, but it’s much needed. I’m also impressed with the networking efforts of AGE of Central Texas. To spread information about such resources, I suggest reaching out to parish nurses and ask them to inform people via their church bulletins. In the Catholic Church, it might also be useful to talk to personnel at the diocesan level and ask how best to inform others. There is a very good diocesan monthly newspaper.
Anything else you want to say to family caregivers or to family & friends?
I don’t believe I could say too many nice things about Hospice! These professionals were wonderful to us in my parents’ final year. It’s not giving up for a caregiver to involve Hospice when your doctor agrees it’s time. And death doesn’t have to be absolutely imminent to receive excellent help. Hospice care is another positive step toward making sure your loved ones are cared for in the best way possible.
Finally, do all you do with love. That’s what gives you strength and endurance. Love is what brings you a lasting memory with comfort and peace.
How Hard Could It Be? A Caregiver’s Story Available on Amazon or Barnes & Noble
About the author
Margaret Sheehan earned a master’s degree in theology from Loyola University, Chicago, Illinois. She has worked in university and business contexts as a typist editor, and organizer. For seven years Sheehan worked in Catholic parishes as director of religious education and facilitator of special events.