Should We Take a Person with Severe Dementia to the Funeral of a Loved one?
by Carol Bradley Bursack, Editor-in-Chief
When my dad died, my mom was getting very ill with physical problems and her dementia was worsening (this was not Alzheimer's). While I had to handle the arrangements for Dad's funeral and all of the rest, I also needed to make sure Mom was taken care of. It helped that they had both been in the same nursing home for years, and we were having the funeral in the nursing home chapel.
The staff brought Mom down to the chapel at a good time - without the dress I'd laid out for her. My pride was injured in that she didn't look physically ""well kept,"" and that bothered me. The explanation for her sweatshirt-and-pants outfit was perfectly logical. Mom had refused to change clothes. There was no point in their fighting her about that detail - and I knew that my worry was all about me, anyway. Who cares what she wore to Dad's funeral?
The point is that I knew Mom was only mentally half there at the funeral, and her short-term memory was very bad. During the days after Dad's death, she had repeatedly asked if he had really died. When I explained that he had, she would say, ""Did he really? I can't believe it."" This was horrible for me, but there was no way around telling and re-telling the truth. This went on for weeks after the funeral, as well.
Many people face an every greater degree of memory loss with an elder, especially when Alzheimer's is an issue. That is why they write and ask about taking the loved one to the spouse's funeral. My take is this: No matter how bad a person's memory is, unless a physical issue or some other overriding event prevents their attendance, the person deserves to go to his or her spouse's funeral. To not include the person in these rites because it's easier for us, or even out of genuinely not wanting to ""put them through it,"" in my opinion dishonors the marriage, the deceased and the person with dementia.
After It's Over
Okay, so then what? You take your Mom to her husband's funeral, and even the burial. She's broken up, or the other extreme, doesn't have a clue to what happened. Let me assure you, you still did the right thing.
This is why: You honored the marriage, yes, but you also can tell your surviving parent, should the subject come up, that he or she did go to the funeral.
When it comes to dementia, we can't assume anything. For most people, there are levels of ""in and out."" There can be astonishing moments of clarity, even in later stage Alzheimer's. No one that I know of can realistically claim to know what is going on in another's mind (though many make assumptions). That holds true, of course, for people with or without dementia. However, sometimes we who at least assume we have normal brain functioning, can make judgments about what is going on in the brain of our dementia afflicted loved one. We can, unwittingly, dismiss them as more diminished than they really are.
For example, my dad would spend days or weeks in some fantasy world, thinking he was asked to run for mayor or even president, and having me write letters to dignitaries to explain why this was impossible (this is only one aspect to his many mind trips). Yet Dad would have moments of clarity that would descend from out of the blue. They would come and go in an instant. I would not have wanted to miss one of them, whether that moment was happy or sad.
I remember many of them well, but one that comes to mind at the moment is when he looked me straight in the eyes - with the full force of his pre-dementia look - and said, ""Sometimes I think I make up these things so I have something to do.""
Wow! This from a delusional man who hadn't made sense in seemingly forever. What brought that moment of clarity? I had and have no explanation. I'd bet that no medical expert could have mapped out that moment and prepared me, either.
What if you don't take your parent with dementia to his or her spouse's funeral? Then, later you find he or she is devastated to have missed it. How would you feel?
You could explain why you didn't take your mom to her grandson's graduation ceremony (too long, too hot, too many steps). You could explain why you didn't take her to her granddaughter's Christmas program. You could explain nearly anything and get away with it. But, in my opinion, you could have a hard time explaining, in a kind way, why you didn't include her own husband's funeral.
As mentioned before, Mom kept asking me over and over about Dad's death. Her dementia was such that I could only tell the truth and comfort her, painful as it was. However, when a parent is in severe dementia, you may have to find ways to keep him or her from having to continually re-live the event. My mom eventually ""got it."" Your mom or dad may not, especially if Alzheimer's is present.
I'd suggest you have a family meeting of some kind and discuss with siblings just what to say when a parent asks about the deceased spouse. Many people will say, ""You'll see him (or her) soon."" For those who believe in an afterlife, this is a heartfelt statement. For those who do not, it still works as a kind diversion that can ease pain.
Some say we should tell the dead-on truth every time (no pun intended). I disagree. I think we can, once the funeral is over and life goes on, soften the blow and refrain from inflicting more sorrow than necessary. However, that is an individual or family decision. You'll have to figure that out, and perhaps roll with different answers as the days pass. Find out what causes the least amount of pain and go with it.
Caregiving is not a black and white world. Rarely is there a day where the caregiver can say, ""I know this is right."" All we can do is our best. By taking your parent to his or her spouse's funeral, you did that. How you follow the event will be up to you.