Most of us assume that, when people have spent decades as husband and wife, they will take care of each other as they age. If one spouse should get a debilitating illness, wouldn't the well spouse be the natural caregiver? Sometimes they are, but other times the well spouse may be the least capable person when it comes to long-term care of an ill spouse.
My mother was a wonderful, caring person. She was the default caregiver for her parents and for her mother-in-law. In fact, my paternal grandmother lived with our family during her last years and Mom handled her caregiving role admirably.
When my dad was in his 70s, he had brain surgery that was to correct the after effects of a World War II injury. He came out of surgery with severe dementia.
Mom had health issues of her own by then, including severe osteoarthritis. The fact that Dad needed nursing home care after his surgery was obvious. Mom was in no shape to take on this challenge, so I, as the adult child in town with my parents, became the person to make all of the arrangements.
Once Dad was situated in the home, Mom was diligent about visiting him daily. However, this man, her beloved husband of decades, was no longer the man she married. During the first years Dad was in the nursing home, she could, on some level, understand why he acted the way he did. However, his sometimes bizarre behavior humiliated her. This was not the dignified man she married and spent her life with. She felt horrible for him that people would see him acting in a way that was, to her, undignified. She felt embarrassed for herself that people would see her husband in this light.
It's not that she didn't care. It's not that she didn't do her best. But the management of his dementia, including me becoming his "office manager," making business cards for him, making fake degrees for him he thought he'd earned and generally playing an elaborate game of pretend in order to give him a purpose in life was, well, too bizarre for her. She was fine with what I did, even grateful. But the emotional pain of seeing him so mentally changed devastated her to the point that she would sometimes forget that he couldn't be rational and badger him to stop acting like that.
Occasionally, when Dad was having a good day, they could enjoy a walk down memory lane. I brought to the nursing home their photo album from some trips they'd taken. I even got them some materials to plan another trip, if the time came when they could travel. I picked up food from restaurants around town they had once enjoyed. On days when Dad could be part of this routine, Mom did okay.
But on days when he was mentally off, seemingly on another planet, she just couldn't bear it. She would get frustrated and sometimes angry. She always spent her time with him at the home, and if he was sleepy, she'd read or watch TV. But when he was in one of his excited, delusional moods, she would sometimes need to leave. I understood. It was painful--no, excruciating--for me to see Dad like this. I knew that for her the pain was even worse.
Dad enjoyed the music they often had at the nursing home. Groups would come in from around the community. Mom loved music, but wouldn't go down to the community room with Dad so they could listen together. Dad would act so uninhibited around music that he'd drum on the table and sing loudly, making a spectacle of himself. This was in total opposition to his basic personality. He was no longer the quiet, dignified man she married. She couldn't bear to watch.
I know it wasn't just Mom who had problems with this caregiving role. I also know it had nothing to do with her love for him. She just couldn't be his daily, hands-on caregiver. The emotional pain was too great.
As a columnist and blogger, I've received letters and notes from adult children who are baffled that their once happy folks have fallen into squabbling because the well parent can't deal with the disease of the ill parent.
I believe this happens more often with diseases such as dementia, which affect the brain, than with physical ailments. Dementia changes personalities. It's the personality the spouse married. We all expect bodies to decline, but when a person finds that they are married to someone who is effectively a stranger, not all bear up well under the strain.
I know many wonderful marriages where the spouse becomes a perfect caregiver. I have no statistics to give readers about how many spouses become good caregivers vs. how many do better turning the job over to a care agency or the adult children. Most caregivers are more interested in their own situation - and if others share it - than they are in statistics, so I haven't waited for studies to answer people's questions.
I can, with good conscience, tell those who ask me about this sometimes puzzling situation that they are not alone. That is something they need to hear. They need to know it's not just their parents who have failed to pass this excruciating test.
The main advice I have for people who run into this problem is to roll with it. Hire in-home help for as long as that works. That relieves the well spouse of some responsibility and this freedom can be a life saver, literally. Then, when that no longer works, move the parent or parents to assisted living or if needed, a nursing home. Do what you can for each of your parents. But please, try to understand the parent who can't be a primary caregiver.
Remember that the well spouse is deep grief over the loss of his or her soul mate and often is confused or angry about being given this seeming stranger to care for. It's something not everyone can handle. Be kind. Be forgiving. Try not to blame. And seek outside help. When you take action, both parents will probably be happier. And you could be preventing elder abuse. An ill elder is more likely to be abused by an elderly well spouse than by adult children or other caregivers. Sometimes that is because of a history of spousal abuse, but often it's not.
Well spouses are often in denial and think they must be the caregiver. Then, they find they can't do it alone. They wonder, what happened to my mate and who is this person in his or her place? Try to have compassion for both parents and get them the outside help they need. My mom's love for my dad never died. She just needed help with the dramatically changed man who was still her husband. In that way, they faced their future together.