Advice from a Parkinson's Widow: 20 Lessons I Never Wanted to Learn: Parkinson's Disease, #2

By Barbara Sheklin Davis

In the first two decades of the twentieth century, age-adjusted death rates for Parkinson disease among older adults increased from 41.7 to 65.3 per 100,000 population. Among men, the rate increased from 65.2 per 100,000 to 97.9. Barbara Davis's husband had Parkinson's for over twenty years. She wrote Advice from a Parkinson's Wife after more than two decades of personal experience to chronicle the serious matters that most Parkinson's partners don't like to talk about publicly, and the feelings and frustrations they are embarrassed to share. By discussing these challenges openly and honestly, she sought to help others in ways that are not otherwise easily accessible, and to let them know that they are not alone in dealing with the negative life impacts of Parkinson's Disease.

Sadly, like most Parkinson's wives, Barbara became a Parkinson's widow. She was both prepared and completely unprepared for her husband's death. Writing Advice from a Parkinson's Widow: 20 Lessons I Never Wanted to Learn provided her an opportunity to reconnect with those who have undertaken the Parkinson's journey as caregivers and now as widows. The lessons and suggestions in Advice from a Parkinson's Widow are appropriate for both men and women, as well as for those who have lost their spouses to other long-term diseases. It is written from the perspective of one who learned as she went along, in the hope that others may be spared some of the difficulties and may find their way eased. Among the topics covered in the book are:

 

• Money Matters
• Eating Alone
• Feeling Sorry for Yourself
• Anger Management
• Freedom and/from Guilt
• How You Know You're Getting Better
• Remembering

Parkinson's is not considered a "deadly disease," but for those who die with it and those who survive, the term "deadly" seems appropriate. While fully aware of the burdens of both living and dying with Parkinson's Advice from a Parkinson's Widow offers sound counsel, consolation, understanding, and hope.

• Language: English
• Publisher: Parker Hayden Media
• Release date: Feb 13, 2022
• ISBN: 9781950349432

Book preview

INTRODUCTION

You’re going to be a widow, Barbara, the doctor said. My heart stopped. My husband had had Parkinson’s disease for twenty years. He had had a kidney transplant. He had dementia. He was not a well man. I was a full-time caregiver, having retired from a much-loved position to take care of him. But he was not going to die. I was not going to be a widow. No.

I left the doctor’s office in shock. No matter how difficult caregiving was, no matter how much I grieved the loss of the life we used to have, no matter how much I railed against the awfulness of our situation, I was totally and completely unable to grasp that he might succumb to his ailments. I was fighting too hard. I was doing too much. I would not let it happen.

Things got worse and I fought harder, did things I never thought I could do, brought in help. I didn’t want him to die. Even though he was not the man I married, he was still the man I married. I loved him. I wanted to fix him, cure him, take care of him. But ultimately, I could not save him, no matter what I did. My only consolation was that he seemed to be at peace and he slipped away without pain or anguish.

Leaving me alone with my pain and anguish. Not right away, of course. There were things to do and people came, and for a week, I was distracted. When they left, there were other things to take care of. Financial things. Changes of ownership. Notifications. Thank you notes for donations in his memory. There were lots of things to do, especially during daylight hours.

The nights were harder. During my husband’s illness, I had moved out of our room and slept in an adjacent room. I could not return to our marriage bed when he died. Not only because he had suffered so much in that bed as because he was no longer in that bed. How could I sleep alone in a bed I had shared with him for over fifty years?

Not that I could sleep in another bed either. After years of listening in my sleep for him to move around or wake up, I found that I didn’t sleep any better when he wasn’t there. I still was listening for him, still waking and thinking I heard him call for me. Because the fact is that, no matter how difficult it was to never have a restful night’s sleep when he was alive, I missed that when he was gone. I wanted to hear him snore or cough or call. I wanted him to be there.

But he wasn’t. Not at night. Not in the morning. I read a book entitled American by Day by Derek Miller that described a young girl’s reaction to her mother’s death, noting that it did not upset her so much that her mother died as much as it baffled her that her mother would continue to be dead each morning. That was exactly how I felt. I knew he was gone, but each morning I wanted him not to be gone. It was as if death and the funeral were something we had to go through, but now they were over, and I somehow expected things to go back to normal, to be the way they were.

But they never would. And it hurt. A lot.

They say that being a widow is like folding a fitted sheet. Nobody really knows how. There are as many ways to be a widow as there are to be a wife. Widows used to have to wear black dresses with no adornment from the hour their husbands died for the rest of their lives. Some had to have their heads shaved, were forced to give up meat, and were forbidden to attend happy events like weddings; some even had to commit suicide by jumping into their husbands’ funeral pyres.

Things have improved, certainly, but in some cases, they may only have transmogrified. Widows today may no longer be condemned to widow’s weeds, but the blackness may still be there. There is a lot of negativity associated with widowhood. A black widow is a venomous and deadly spider who kills and consumes her mate. The term is used to refer to a woman who kills one or more of her lovers or, less horrifically, to a woman who takes advantage of men and then discards them. The wife of a martyred suicide bomber is also called a black widow.

A widow’s peak is a distinctive, V-shaped hairline, genetically-based like dimples. But it is associated with evil and is a feature of figures such as Dracula and The Joker. There are also grass widows and sod widows. Grass widows are women whose husbands have left them for a prolonged period. It is also possible that they were never married to these men but only met them