A Caregiver’s Story (In his own words)

Caregiver's dilemmaI was suddenly thrown into the role of caregiver on November 21, 2005. This is the day that my wife Heather and I were stunned with the news that she had malignant pleural mesothelioma. Our lives changed from being the happy parents of a three month old daughter to a family thrown into chaos. Plans for celebrating Lily’s first Christmas were replaced with details of Heathers need for immediate treatment.

As the doctor told us about the illness, my wife seemed to be lost in shock and disbelief. She said nothing as we were given three options for finding a specialist who would provide her treatment. The university hospital was nearby and we could choose the convenience of not having to leave the area for her treatment. Although the regional hospital had a great reputation, a developed mesothelioma program wasn’t available. Dr. David Sugarbaker specialized in mesothelioma, but that meant traveling to Boston.

It was then that it hit me that my life had changed as much as hers. Heather seemed unable to respond to the doctor with a decision, too shocked and terrified by the news, so it was up to me to choose her care. I immediately told the doctor “Get us to Boston.” Traveling would be inconvenient, but the specialist seemed our best hope, and I was willing to do anything in the world to help her.

Heather and I had both worked full time up until the diagnosis. After that, I could only work part time because of the time spent making appointments, travel arrangements, and the trips to Boston. Through it all, Lily still needed my attention. Heather, of course, wasn’t able to work at all. The chaos of those first two months was overwhelming. There was just so much to do, and the list continued to grow no matter how hard I tried to accomplish the needed tasks.

This was when I was assailed by the fears of what the future might bring. I had to face that fact that my wife might die and I would be alone to raise our daughter.. The possibility of losing our home and all of our possessions because of lost income and the cost of traveling for treatments to battle the mesothelioma scared me to the point that I started to bawl my eyes out right on the kitchen floor. The added stress of keeping my fears from my wife and young daughter made me feel isolated and alone.

I was slow to realize that we had never been alone. Friends and family stood by us, offering words of comfort and even financial assistance. Support was offered by complete strangers as well. We can’t thank them enough, but it taught me an important lesson that I can share with other cancer patients and their caregivers. Accept the help that is offered. The things to worry about are many, and any relief will reduce the stress so that you’re more able to handle the next task on the list. Emotional support may be the best offer of help. It proves that you’re not alone with your burdens.

It’s not easy to be a caregiver to someone who has been diagnosed with a serious illness. Your life is changed to one full of uncertainty, chaos and stress. It’s a job that you can’t walk away from when you are panicked or overwhelmed. All you can do is hold on to hope, and lean on those who care about you.

Heather is now cancer free, but months of fighting the mesothelioma through surgery, radiation, and chemotherapy took us away from anything resembling a normal family routine. Although as a family we struggled through some bleak times, we never lost hope. With the support of friends, family, and strangers we were able to keep our sanity and work our way through the life challenge that threatened to destroy us.

I’ve learned a lot from being a caregiver to a loved one with a serious illness. Possibly the most important lesson is that it takes strength to let go of pride and ask for help. No matter what the challenge, hope will keep you going, and emotional support keeps that hope alive.

Tending to the needs of my wife and daughter while juggling the medical appointments, travel and normal household responsibilities showed me that I could manage any amount of stress. It also polished my time management skills. I was able to return to school to earn my degree two years after Heather was diagnosed with mesothelioma. Fighting for Heather made me see that I was capable of doing more than I could have ever dreamed.

When do you discuss the future of the family home with your elderly parents?

Our Family Home  www.parentcareplanning.wordpress.com

I just read an article in the Real Estate Section of the Sunday New York Times ( June 30. 2014) written by Constance Rosenblum , the City Editor. She makes a very good point that all adult children need to discuss with their elderly parents. What do our elderly parents believe is the future of their family home?

For many of our parents, their home is probably the most valuable asset they own. It is  the last thing that they want to give up. But they need to realize that if they leave it to their children to decide, after they are gone, it can often lead to family rifts that last for decades.

One of my wife’s friends took care of her parents the last few years of their lives. She lived with them full time and dedicated her life to taking care of them. When they died they left their home to her in their wills. Her brothers were shocked and extremely upset that they were not consulted in this decision. As a result they have not spoke to her for years.

Ms. Rosenblum makes several very valid points in the article:

  1. Take a few basic steps early on. This will avoid problems in the future
  2. Start early to discuss the future of your parents’ home with them, while they are both healthy.
  3. Begin the conversation in a non-threatening setting. Consider sharing with them the article that appeared in the NY Times (or this blog)
  4. Balance Competing Issues. Don’t let taxes and financial concerns be the only motivating factors. Consider if the home still works for your parents and will as they age.
  5. The future of the family home becomes more complicated when several children are involved. Each has their own agenda. Involve everyone in the discussion.

In my book, “Can We Talk? A Financial Guide For Baby Boomers Assisting Their Elderly Parents” I have a chapter on transferring real estate from your parents which includes such ideas as the Life Estate and the Qualified Personal Residence Trust. Please read this chapter to learn more.