Entering the world of dementia caregiving…Abandon hope all ye who enter here? In my case, I found hoping for things to get better is not healthy. Hoping for just another day of recognition, of being together is something else…

If you are caring for a loved one with dementia, you are entering into an experience you could not have imagine – one filled with both rewards and sadness. We’ll spend some time on this subject…

Sixth in a Series: This is part of an ongoing series about our family’s experience with dementia. There is no order to it, just observations, reflections and, I hope, some guidance for others on this journey or who may someday begin it. It is not intended as any sort of financial, medical or psychiatric advice. Just one family’s experience…

IT HAS BEEN a while since I posted. I had good intentions that I would chronicle our journey into and through dementia at least weekly, maybe more often, mixing the clinical, financial aspects with some shorter personal vignettes. 

Well, welcome to another part of dealing with dementia as a spouse and caregiver. Things get in the way. In my case it has been a period of depression, inertia, lethargy and no small amount of self-pity leading to a massive writer’s block. Well, more than that, really. I have been in a period of withdrawal, of cocooning. It has been a time of dark rooms with the sheets pulled over my head, of mental hiding if not physical.

All of which leads me to the topic of caregiving and its impact on those who attempt to provide it.

Before I go on, I want to make something clear. I am going to talk about caregiving as it applies to dementia because I have learned it is unique. But, I don’t want to in any way belittle care-giving for other types of conditions, illnesses. Regardless of what sort of care you may be providing a loved one, it’s tough. Cancer, stroke, heart conditions, diabetes…the list could go on. It’s been well-documented that caregiving by family members, who generally are untrained and unprepared, is not just hard. It can be debilitating and more than a little lonely. It impacts you physically and mentally.

But, caregiving when it comes to dementia is different. It is caregiving without hope. In fact, I came to realize that to survive caregiving for someone suffering from dementia, I had to quit thinking in terms of hope. That was tough, and it may be a decision not all can make. In my mind I came to feel that I could hope for as many days as possible where your loved one knows who you are and you can talk with each other, still have a relationship. But hope in terms of a cure, that someday they will emerge from this dark hell? No. Not for me.

Our son-in-law has been battling a rare form of tumor for years. He has gone through all sorts of drugs, been in drug trials and he has kept it from growing. I have a neighbor whose wife died not long ago from cancer, but she dealt with it for years, trying everything, hoping that if she lived long enough there would be a cure. With cancer, that’s a reasonable hope. I have friends who have made it back from serious strokes. For them, hope was a critical part of coping and they had reasons to think that maybe, just beyond the horizon, there was a chance of a cure.

With dementia, there is no cure. True, they have found a drug – an expensive one – that might slow the progress of Alzheimer’s in some patients. That’s progress and I celebrate it. But, it is not a cure and a similar drug has not been found for Connie’s particular form of dementia.

Most readers probably will not remember Admiral Jim Stockdale. He was the highest-ranking U.S. officer to be held as a prisoner-of-war by North Vietnam. Later he was Ross Perot’s running mate on a third-party presidential ticket. In an interview he posited that the prisoners who did not survive captivity were the optimists. 

            “….. they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart. This a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

            I have come to realize what he meant. I do have faith that I will prevail. Me, personally. I will survive this to have more time with our children, grandchildren. But ultimately, my wife will not. In that sense, I have abandoned “hope.” It is not constructive. To accept a harsh and cold reality is not easy, for anyone. Balanced against my own history of depression, I find it particularly hard. 

            WHAT DOES ALL this have to do with being a caregiver for someone with dementia? For me, a lot. I have found myself wondering if “caregiver” is even the right word for what I have been doing for what amounts to more than a year now. There are times when I feel like a guardian, a functionary who has taken over all the roles in radically changed household.

            But care? I suppose a hug, a kiss, a cuddle, a smile constitute care. But I am not providing care in the sense of changing adult diapers, giving baths, dispensing medicine. I am not sure what I would call what I have been doing. Maybe it’s as simple as just being there. Just doing what any loving spouse would do.

            This post doesn’t offer a lot of advice. That will come in the next one. Since this blog is not so much for someone with dementia, but those who are dealing with a loved one suffering from it, I’ll talk next time about what this journey has done for me so far and what experts say about care giving, and how to survive it.

Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year, and a recipient of the Molly Ivins First Amendment Award from the Walker County (TX) Democrat Club. He taught journalism at Western Illinois University and leadership and community development at Woodbury College in Vermont.  Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].