Jen and Bill had been married for over 50 years.
“It’s a lifetime she told me. We have been through many ups and downs. There were times when we were not sure if we would make it. But we did. We had made a commitment to each other. That’s what marriage is. We didn’t give up on one another and I am not going to give up on Bill now!”
Jen was firm about this.
She loved her husband and had promised to take care of him no matter what happened. Of course, when she made that promise she had no idea what dementia was. More importantly she didn’t have a clue what challenges it would present.
And I understood. I have been married a long time. And I know that feeling of responsibility and commitment you have for a spouse. Having cared for both my mother and my mother in law who had dementia I also knew what the future may hold in store for Jen and Bill.
Bill had been diagnosed with Alzheimer’s disease a few years ago. In the beginning Jen and Bill were able to keep his condition a secret from everyone. Jen began doing all of the driving. She told people that Bill had a bad back and driving made it worse. She also took over the bill paying, hiring people to do any home repairs that were needed and pretty much all of the household chores. And she took care of Bill. She made sure he ate the proper foods, walked daily and played mind games to try to ward off this invader in their life.
Keeping the secret was important for both Bill and Jen. It meant that they could pretend everything was okay. But the disease began to progress. Bill was no longer about to dress or bathe himself. And he was a large man. Jen on the other hand was quite small. Physically caring for Bill became a struggle. And after a couple of years of trying to do everything by herself it became mentally and emotionally draining.
The Pain of Keeping Secrets
“I have lost most of my friends!” Jen told me “Every time I was invited somewhere I made up an excuse. I couldn’t tell them what was really going on. Finally, they just stopped calling. And I am afraid I have done the same thing to our son and his family. They live out in California. Jim wanted to come for a visit with his family a few months back. I told him we were in the middle of remodeling and maybe next summer would be better. I could tell he was hurt. I make excuses when he calls to talk to his Dad. And I am afraid he might think that Bill doesn’t want to talk to him. I just don’t know how to tell him.”
Tell Me About Your Husband
And so, we talked about Bill. I wanted to know all about him as a young man. I asked her if he changed any after the children were born. And of course, the answer was yes. Though the essence of Bill was still there, children have a way of making you look at life differently.
I asked about his work and what changes he experienced when he retired. Then I asked Jen if the man she married was the same man that now sat before her.
The answer was both yes and no.
And I asked about the commitment she had made on her wedding day. Did caring for someone mean that you did the physical care giving part? Or perhaps it meant something deeper. I proposed that possibly caring for someone you love might mean making the best decisions regarding their care.
Jen pondered on this for a while.
Then I asked her.
When you struggle to help Jim shower and dress how do you feel? When you get up each morning are you excited about what the day will bring? Do you feel joyful and happy most days? And finally, I asked, do you feel that Jim deserves to have people around him who are happy and joyful? Do you feel that Jim deserves to have his wife by his side instead of an exhausted caregiver?
As the tears flowed Jen realized that I was right. She was no longer the best caregiver for Bill.
“So How can I be his wife again?” she asked.
The Plan- Becoming Bill's Wife Again
The first step was to come clean. No more secrets. And the support and love was overwhelming. Her son Jim flew in immediately to help his mom look for a memory care home. Jen realized that not telling Jim about his Dad robbed him of the opportunity to help.
She called a few old friends and asked if they would spread the word. Ladies popped by with casseroles and a group even formed a cleaning crew and told Jen they would be by every week to clean the house for her. And Bill basked in all of the new attention.
Time To Move
Jen and Jim found a small assisted living home close to where Jen and Bill lived. Bill settled in pretty quickly to the new care home. And Jen took a bit longer. She found it hard to let go of her need to control everything.
Jen comes for lunch every day and spends most of the afternoon with Bill. Occasionally she takes off a day here or there to go somewhere with her friends. And Jim is trying to talk her into coming to California for a week. Furthermore she is really considering the offer.
“It is good being Bill’s wife again” she told me. “And I know her is being well cared for.”
Pat Mack has been helping families make the right decisions to care for someone they love since 1997.
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