One of my best friend's father is dying and even though she's miles away, I can feel the sorrow behind the funny emails she sends me. Because she doesn't work and her kids are grown, she's had the time to go out and stay with her parents as they've moved through Alzheimer's, strokes and chronic old age. In other words, she has had the great privilege of really being with her parents as they depart this world.
That's not a sarcastic statement. It is a privilege.My dad died in 2003, and even though I was working (and we had four kids at home), he was close enough that I got to see him a lot. Every Sunday, I'd drive the 30 minutes from Swarthmore to Wilmington with my daughter and spend the evening with Grandpa Tom. We wouldn't do much - just talk and have some tea, play some card games, and hang out together. I might cut my Dad's toenails (my other sister would do anything but that) and slather him up with lotion since his skin got terribly dry after his stroke. Or I'd bring him some new shirts I'd found at the Goodwill. He never wanted me to buy him new clothes because he figured he wouldn't be around long enough to wear them out, but he loved the used shirts I'd find at the Goodwill and got lots of compliments on them. My dad was a handsome guy and he looked good in bright colors that brought out his green eyes - and I knew how to troll for the good stuff. He was always so tickled that his total wardrobe bill was maybe $15.
Every once in a while, we'd have a cocktail... if I could talk him into it. For as long as I can remember, my dad had a Manhattan every night -- just one, but always one -- and I loved making them for him. He didn't like expensive booze -- he said if he liked it too much, he'd be too tempted to drink it (peculiar but compelling Irish logic). He bought truly frightening $10 half-gallons of gin that he drank for strictly medicinal purposes and would never let me open the bottle of signed Maker's Mark that he kept on the kitchen counter like a talisman.
He'd gotten that bottle on a recent trip to see my cousin Anne in Kentucky and just the memory of that trip with his favorite brother's only daughter (and her sweet husband Jim), brought back by the red-wax encased bottle, gave him much more pleasure than actually drinking the fancy bourbon.
My dad loved to talk about people he used to know and I liked to ask him about certain things in our past that I wasn't quite sure about. Had my Uncle Mart really almost made it to the Big Leagues as a pitcher? What formulas had my dad been working on all those years at DuPont? And why didn't he and my mom ever fight -- or did they?
Being with a parent who is getting near the end is to experience time slowing down to a lethargic crawl. One afternoon can seem like an eternity -- but then you come to the end of a week and you can't think where the time has gone. There's a lot of sitting around doing nothing in particular -- but to me, that was never boring. You know you won't get another chance to ask these questions. But you also know it takes a whole lot of sitting- around-together-time to get to the answers.Towards the end of his life last year, my husband's dad used to think he was back in the service during WWII, and Larry would have riveting, deeply revealing conversations with him about the first years of his marriage to Larry's mother, and his relationship with his own parents. Larry would fly up for the weekend and they would sit in the apartment for hours at the dining room table, maybe doing a jigsaw puzzle, and just wander through the tapestry of his life.
I am so glad my friend is out there with her dad now -- and that two months ago, she chose to go out and spend four long, uncomfortable weeks on her brother's sofa to be with both her parents. Her dad could talk then and was much more lucid. Her mom has Alzheimer's and doesn't remember much but my friend was able to curl her mom's hair, take her out to daycare, and most importantly, get her dad to come home from the hospital. She encouraged her dad to eat, made him laugh, gave him a reason to get out of bed again, and was able to be the good daughter and apple of his eye -- which after he's gone, she'll never be again. (When my dad died, the thing that almost killed me was the realization that nobody would ever be that happy to see me again.)
Of course, it wasn't always that way. My dad was incredibly critical, distant and distracted when we were growing up, but he changed dramatically after my mom's death in 1986. For the first time, he needed us and he wanted to have a relationship with us personally and individually -- all eight of us. For the girls, I think, that was a bit easier than for the boys.
I moved from Colorado back to Swarthmore in 1996 to get married, and went from being the child furthest away to the closest. This enabled me to see my Dad regularly and routinely, while my daughter Lulu developed a specially sweet & warm relationship with her only living grandparent. Of course, I had lots of brothers and sisters to share the taking-care with, but I don't need to tell you that being with an aging parent takes time. Quantity time. It takes Sundays and Friday-night meals together, holidays and mid-week visits, and trips to the hospital after a stroke...
But like I said, it was a privilege. I wouldn't give up that time with my Dad for the world; I only wish I hadn't been working so hard or hadn't let other responsibilities keep me from seeing him more.
Because once your parents are gone, they never come back.It's one of the cruelest mysteries of the universe -- how somebody you love so much and who's given you life can be the instrument of so much crushing pain when they go. I don't understand that; I'll never understand that. The only thing that makes it a little easier to bear is to be the hand they are holding at the end.
P.S. After my Dad's funeral service, we all went back to his apartment, the grandkids put on his funny hats and ties and Goodwill shirts, and we all had shots of that precious bottle of Maker's Mark -- toasting to Grandpa Tom's wonderful life and good death.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
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