Editor's Note: This is the second story in a two-part series that examines caregiving as part of National Family Caregivers Month.
Margaret "Margo" Gordon, 87, smiles as she looks at a large black-and-white photo of her late husband that is framed and sitting on top of her television. He is wearing a bow tie and a grin. It's her favorite picture of him.
She says she frequently talks to him.
Margo and Bill Gordon were longtime friends and colleagues. They married in 1980 after his first wife died. Margo was 59, and he was 69.
They enjoyed traveling the country and visiting his four children.
Just seven years later, Bill received a diagnosis of chronic obstructive pulmonary disease, a progressive illness that makes it hard to breathe.
As his health declined, Margo began to take on more responsibilities. She took over making breakfasts, something Bill had done before. She also took over the finances.
"That got to be my job," she said.
Her husband was an avid gardener and had planted flowers and vegetables in about one-third of the backyard. At first, he coached her from the sidelines, but eventually became too weak to go outdoors. Without his help, Margo said it just wasn't fun to garden anymore.
"That got to be kind of a chore," she said.
Besides the chores, she also took care of him. He was on oxygen full-time and required a variety of medicines. She said one was given intravenously and another one was some sort of drip - she can't quite remember.
What she does recall is how scary it was, but she knew the medicine would only help her loved one. So she did it.
The situation sparked almost daily arguments between the two, something that didn't happen before. Bill's frustrations about not being able to do things led him to swear.
"He said words that I never heard him say before," she said. "I couldn't believe what he was saying."
She would tell him to stop, which only provoked him more. Then, she would feel remorseful because she knew his predicament was tough.
Caregivers and their loved ones go through a roller coaster of emotions. That's why calling for emotional support is just as important as seeking physical and financial help.
At the time of Bill's diagnosis, his doctor recommended hospice. The doctor told Bill that he would die from the disease, but she didn't know when. All the doctor knew was that it wouldn't get better.
"At that time, it was not common for people to refer to hospice and we only had one here at the time," Margo said.
But they were glad the doctor did. Margo said hospice volunteers offered her much-needed respite and support. At first, she used them for things like grocery shopping. In time, she accepted more help.
"I went to a movie one time and I didn't even feel guilty anymore," she said with laughter. "The tendency is, of course, to feel like you have to be there all of the time."
When her sister and brother-in-law's 50th wedding anniversary came up, she wanted to attend the out-of-state celebration but didn't want to leave her husband for a few days. When they couldn't find enough helpers to stay at the home, a hospice worker suggested a nursing home. First, they did a test run by moving Bill in for an overnight stay, and Margo was forbidden to see him. It went well enough that he agreed to stay for those few days.
"He didn't want me to be away, but he wanted me to go," she said. "He thought it would be good for me."
It was. She came back more refreshed and full of things to talk about.
Margo said her husband was able to stay at home because of the services that hospice and the Douglas County Visiting Nurses Association provided. Otherwise, he would have moved to a nursing home permanently.
"I couldn't have done it alone," she said.
Losing precious time
About two years after his diagnosis, his illness took over. In the last week of life, he became bedridden and his appetite faded. She knew they didn't have much time left.
"I was thinking, are there things I should tell him or say to him?" she said. "It was hard. It was this intending-to-do sort of feeling."
A niece and her daughter had come to visit, and Margo was going to show them around Lawrence, but she was hesitant although her husband told her to go in almost a whisper. She was torn. But shortly after the hospice worker arrived, she knew it was time.
"He was very calm and quiet," Margo recalled. "It occurred to me that he must be dying. I talked to him for a little bit, and it seemed he was ready to go."
She leaned over him and said, "I will miss you."
Fortunately, Margo said they didn't have big messes to clear up. They had prepared for the day.
It was the hospice worker's first death, but Margo said he was cool as a cucumber. She was glad to have his support and medical knowledge at such a critical time.
Suzanne MacDonald, director of Social Services for Heart of America Hospice, said it's scary to watch a loved one die, and that's where hospice can help. Hospice agencies provide a range of support - from finding medical equipment to chaplains to respite services to social work. She suggests calling on their services as soon as possible.
"I think people wait until late in the game, and then it really is a lot harder to get on top of symptom management," MacDonald said. "You know, they've already suffered a lot of discomfort, and they're at their wit's end at that point. Whereas if you had gotten in there earlier, you could have improved the quality of life."
She cringes when people say hospice means their loved ones will give up on life.
"It kind of seems like we look at death as something to be battled against. It's going to come. I don't think of it in terms of a battle, but of letting go. I am not going to get there sooner by being on hospice, but I will get there more comfortably."
Hospice also offers bereavement support for loved ones.
"There's no magical, 'Gosh, if you are not over this in a year, there is something wrong with you,'" MacDonald said. "Everybody does it at their own rate."
After Bill passed, Margo felt lost.
"It was kind of eerie because I had given so much time and attention to him, and I had pretty well dropped any kind of other activity," Margo said. "It was like, What do I do now?"
The first thing she did was return to church and become active there. Then, she joined the Older Women's League. Gradually, she began doing things with friends.
"It was a good four to six months before I really got back into myself again and living life - realizing I would be by myself," she said.
Margo said she didn't move out of their three-bedroom home for seven years. She said a repairman's visit was eye-opening for her. While fixing the standing water situation in her basement, he asked if she had cleaned the gutters lately.
"I probably hadn't thought of that in two years, and I thought this is it," she said. "I can't take care of it anymore, so I had better move."
But she doesn't regret waiting.
"People always tell you don't move right away after someone dies, and I do think that's important because you have to get used to the idea," she said. "You kind of still live in the presence of your loved one for a while after the death."
Margo said she could relive the good times at any moment by just going to their favorite spot.
"It's kind of soothing because you can see yourselves in the places where you enjoyed stuff. Like we had a deck where Bill and I often read in the mornings. We would sit out there with our coffee, and sometimes we would read to each other because we tended to like the same things."
Getting rid of their things was difficult but necessary because she moved to her current small apartment near KU's campus. Luckily, the children helped out.
At age 87, Margo doesn't dwell on who might take care of her. She hopes to die like her father. He died of a cerebral hemorrhage while sleeping.
If not, she likely would leave her Lawrence friends and move into a nursing home in St. Louis, where two of her children live.
"I am not anticipating having my kids look after me, and I don't feel that going into a nursing home would be the worst thing," she said. "I think a lot of nursing homes are getting better now. They are much more patient-oriented."
Margo's daughter, Kathleen Cook, and her family plan to visit for Thanksgiving. That's when Margo plans to share a letter with her. The letter describes in detail what she wants when it comes to end-of-life care.
Margo and her husband picked out a tombstone together. It is next to his first wife's gravesite in Minnesota. Margo also has long-term care insurance and has money set aside but worries whether it will be enough especially with today's markets and skyrocketing health care.
"We just take what comes and hope for the best," she said.