Saying Goodbye to a Loved One with Dementia

I Lost My Dad Long Before He Died

Dad and me, enjoying a watered-down happy hour

A person can experience some weird feelings when saying goodbye to a loved one with dementia. I know I did. I had moved 2000 miles away 9 years before he passed and I watched as he slowly became a shadow of his former self. When he actually was gone, my grief was less intense than I anticipated. I thought, “What’s wrong with me?” In retrospect, I realized that it wasn’t as hard as I imagined because I felt like I had lost him a long time before he took his last breath. When doing research for this post, I came across this nugget on the Alzheimer Society of Canada’s website:  “Some caregivers of a person with dementia find that they have grieved the loss of the person for so long that they don’t have strong feelings of grief when the person dies.” I wasn't his primary caregiver but I think the sentiment rings true for loved ones as well. It’s nice to know I am not alone and that it's not weird to feel this way.

Watching my dad deteriorate over time was a lot more painful for me than when he actually died. I didn’t always have a front row seat for it all, but sometimes that makes the change all the more jarring. I saved a bunch of my dad’s voicemails and when I listen to them now, I can see just how much the content of the messages changed during the last several years.

I used to think he was depressed. I assumed he must be because of how sad it all was. I now realize that for me it was sadness but for him there was a good deal of apathy. His dementia made him retreat, lose interest in activities and the company of others. It was a lot harder to watch than I think it was for him to experience it, which gives me some solace, actually. It's a bit bizarre to look back at old pictures and realize I can discover the time period when this man who always wore a button down and slacks stopped caring about his appearance and wore the same ratty tee-shirt for days on end.

Sharing a moment with my dad, close to the end.

When I was a bedside nurse, I saw my fair share of death and I often speculated about which was a better end - to pass quickly or have time to say your goodbyes. With dementia, you often don’t know that things are wrapping up until it’s rather close to the end.

I was raised to believe that keeping the peace in a family took precedence over addressing long standing issues. I bucked this belief rather early on- I think leaving things unsaid is the greater evil though in practice it rarely worked out as I had hoped. I have a lot of friends, family and patients who struggle with unresolved family relationships. Recent studies show that a person can show symptoms of dementia up to 9 years before they receive a diagnosis. The chipping away of a person can be shrugged off as “just forgetful” or a little clumsy, etc., and sometimes by the time you realize the extent of what is going on, or by the time anyone admits what is going on, it can be too late for any sort of meaningful conversation. 

Finding any closure in a relationship where someone has dementia is basically a one-way street. Meaning, if you’re looking for your loved one with dementia to have any input in said closure, you’re not being realistic. If any peace is to be found, it might have to both begin and end with you. There are always stories, though, of brief spurts of lucid conversation where you think maybe there is some meaningful dialogue happening. When that lucidity quickly turns back to confusion though, you are often left wondering.

There is not a lot of information on the web about finding closure with a loved one who has dementia, I think for obvious reasons. But I did find a short list of suggestions on an Alzheimer’s and Dementia blog. The suggestions are to write a letter but don’t send it (maybe read it a couple of times, then burn it, an idea I like), join a support group, talk with a grief counselor, or find a good therapist. All good ideas, but if they aren’t accessible to you for whatever reason, screaming a bunch of expletives into a pillow can sometimes help, too. Just lock the door first, so your kids aren’t scarred any more than they need to be. The other truth is that sometimes you just don't get closure. And that's just the way it goes. This is where I would strongly recommend working with a therapist.

My dad and me, enjoying each other's company, 1998

I try not to fixate on what we weren’t able to accomplish, and instead pull up those memories that bring me joy. Because life, from beginning to end, is a series of ups and downs. Did we have some dysfunction in our family? For sure. Did we also have a lot of good times, a lot of love for each other, more than our fair share of laughs? Hell yes. Even at the end there were beautiful moments, hilarious mishaps, times I felt us all coming together in ways we hadn't before, and times I realized we were likely broken beyond repair. I’m still processing the muck of the experience, but I’m conjuring up happier times to see me through the work.