On July 1, 2016 my life changed in a moment. That was the day the doctor diagnosed Stephan, my husband, my soulmate, with frontotemporal degeneration (FTD). Everything in my life will be measured by before and after. It took about a year and a half for me to really come to grips with the diagnosis. Then in February 2018 we received another blow. Stephan was diagnosed with amyotrophic lateral sclerosis (ALS – Lou Gehrig’s disease). Through all of this I have accumulated a lifetime of unwanted information. I am still accumulating information. Most of what I have learned has come from other caregivers.

A lot of what I have learned has broken my heart for those who care for a spouse with FTD and ALS. Much of what I have learned will translate to other dementias or even other caregivers, but I have a special place in my heart for those who have spouses with FTD. Through this process, I have found a compelling need to advocate for the caregivers. The stress that comes from such a condition as dementia takes its toll on caregivers. A Stanford University study found that 40% of family caregivers for people with Alzheimer’s die from a stress-related disorder before the person in their care does.

There is a lot of information for caregivers on how to care for their loved one with dementia. There is less information available for caregivers on how to take care of themselves. There is even less information on how others can care for the caregivers. Caregivers already feel like they are doing everything and they are being told to also take care of themselves.

With a dementia diagnosis, often friends and family disappear because they don’t know what to say or do. The discomfort they feel causes them to justify their absence. They don’t want to say the wrong thing, they don’t want to see their friend or family member in such a state, they just don’t know what to do. For the caregiver, the journey becomes extremely lonely.

After the death of a spouse, friends and family go back to their lives as well. They assume that now the caregiving days are over that things will go back to normal. What I am finding is that the grieving never ends. Every person's grief is different and there is no one progression or timetable.

I hope that I can in some small way give some encouragement to other caregivers and widows. Not only do I want to encourage caregivers and widows, but I hope to help others find ways to support the those they know. Most of the things caregivers and widows need are not expensive or even terribly time consuming. You would be surprised how easy it is to make a difference. People, in general, really do want to help and I hope I can find ways for that to happen.