A personal story: The death of a spouse is never easy, but hospice can ease the transition
I post a column every Monday morning about our weekly radio show, Everything Elderly. This posting below is more personal, something I want to share, with information others may find useful.
About six weeks ago on Labor Day, my wife Joan passed away, one week before she would have turned 55. She had battled breast cancer for more than 13 years. We had known for the last couple years that her life would very likely be cut short. The cancer had spread to her brain, and that ultimately took her life.
While Joan never liked to discuss her prognosis, I knew by this past spring, this year would likely be her last. I thought I was ready for this outcome, but I wasn’t. The final months held many unexpected lessons.
Joan’s condition deteriorated significantly the first week of July, and she was only able to get around with a walker or in a wheelchair. For the first time, she went on medical leave from her analyst job at Ford Motor Co.’s World Headquarters. She required assistance to stand up or sit down. She slept most nights on the couch in our living room.
She received in-home physical therapy and occupational therapy. Joan was still optimistic and totally set on getting back to work, although it was clear to me that would not happen.
For the last four weeks of her life, Joan needed full personal care. She was completely bed-bound, and she wanted it to be me that took care of her. Taking care of my wife was the most important and most rewarding job I ever had. Providing her care was never a burden.
Providing her care really brought us closer, emotionally. It surprised me how important this became to me. I slept on the couch, near Joan’s hospital bed in our living room. Initially Joan asked me to do this, but it became much more that I wanted (needed) to be near her.
We travelled a lot in our 17 years together. Maybe no trip was more special than our last adventure that we almost didn’t take. We had planned a road trip to see family in Madison, Wis. and South Dakota. By the time we started the trip (at the end of July), Joan needed her wheelchair and could not go to the restroom without help.
Oddly enough, this made for some of the better experiences on the trip. We were both concerned about the required restroom pit stops, and me having to take Joan to the ladies' room (very few rest areas have unisex family facilities). But we just barged in with me loudly stating “husband coming in with his wife, in a wheelchair.”
What we found was universal understanding, offers to help and words of encouragement. In her last weeks, Joan mentioned several times how happy she was we had made that trip.
Another thing we got right was utilizing caringbridge.com. My wife suggested this, having seen the service used for a friend’s family. Caring Bridge is a wonderful way to efficiently provide updates to family and friends, while allowing them to participate in the conversation. Joan’s web page had more than 4,600 visits, and 325 postings from friends and family.
In her final weeks, we didn’t do everything right, but I think Joan had as good an ending as we could hope for. The biggest thing we did right was opt for in-home hospice care sooner than later.
Fortunately from my experience with my in-home care business, I am well aware too many families either never use hospice, or start hospice care later than they maybe should. Joan and I requested hospice care in early August, and our wonderful University of Michigan oncologist provided the prescription, quickly agreeing it was the appropriate time.
Hospice care is not about dying; it’s about optimizing your quality of life in the time left, for the patient and the family. The focus is on comfort management, instead of active medical treatment. The home care assistance and skilled nursing care we received was so helpful, and incredibly warm and caring. It made life better and more manageable, and allowed us to enjoy Joan’s remaining time.
I also learned how I would help a friend or family member going through a similar experience. The dinners people brought were greatly appreciated. It really helped to not have to think about what’s for dinner.
When I have the chance, I will offer help and be specific and a bit insistent - “I am bringing over dinner on Wednesday night — would you like meatloaf or spaghetti?” or “I am coming over on Saturday to vacuum, is 10 a.m. too early?”
For close friends or family, it is certainly appropriate to offer to stay in the home and be there full-time to provide help. Joan and I had very welcome stay-over guests helping during her last few weeks, and it made a big difference. It was also a gift from Joan to let these people be part of this intimate time of her life.
I don’t have any regrets, and there aren’t any “I wish we had done this or that.” We didn’t have a perfect marriage, but we had a very good one — it was a strong, confident relationship we both believed in.
Joan’s memorial services are over (besides the Ann Arbor service, there was also a service in California, her home state). Of course the grieving continues. I miss her terribly and so wish she was still here. But what I feel most intensely is an enormous sadness. Not for me, but for Joan. She was such a good, thoughtful and kind person. She deserved a full lifetime which, unfortunately, she did not get.
Alan Caldwell co-hosts Everything Elderly every Saturday morning at 8:30 on 1290 WLBY. In his day job, Alan co-owns and co-manages Senior Helpers, providing in-home care services, primarily to the elderly. He may be contacted at firstname.lastname@example.org, or at 734-927-3111.