It has been a month since I have last seen my dad. What a difference a month has made. He's not walking anymore, using a wheelchair now to get from bed to the table where he spends most of his day. His confusion has reached a new level. I apparently moved to Canada, unbeknownst to me. On the bright side, they do have a good health care system up there and the Canadian ecconomy is humming along. But he still knows me and he definitely appreciated my visit.
On Thursday, I took my dad to see his one remaining doctor, a shrink who works in the cancer division of NYU Hospital, primarily with geriatric patients. He has been wonderful to my dad and to our entire family. While in the waiting room, my father was asked to fill out a form describing what his last two weeks have been like. He read it through carefully and then handed it to me without a mark. "Ask me the questions," my dad instructed me, "and you can put my answers down." Simple enough. All the reports I had received over the past few weeks have been quite depressing: he has not been sleeping, he has been angry, some days he won't get out of bed, etc.
OK, here we go: Dad, have you had any trouble falling asleep or getting up frequently through the night? No. How is your mood -- are you sad or depressed? No. Do you find yourself getting angry or agitated? No. Loss of appetite? No. And on and on. After we completed the 20 questions, the aide at the desk looked up and smiled: "Looks like your dad is doing better than you are." At that point, I could no longer contain my laughter. It felt good to let it out. One might chalk up all these inaccurate answers to his dementia, but my father has been really good at denial all his life. Some things never change.
My sister had a 2,000 piece jigsaw puzzle at her house. I figured it was worth a shot. Maybe my dad could pick out the straight-edged pieces or possibly even connect a piece or two. Worst case, it would give me something to do for the hours we sat together at the table. It turned out to be a stroke of genius. My dad did find a straight-sided piece or two, but for the most part, the puzzle was beyond him. On the other hand, he sat there with me for hours, intensely engaged by the fact that I was making almost no progress at all. The puzzle was of a villa in Tuscany. Of the 2,000 pieces, 1,000 were blue (the sky) and 1,000 were yellow (the hay). I've completed my fair share of puzzles in my life, but this was ridiculous. My failure to make much progress day after day somehow deeply intrigued my dad. When I stopped by this morning to say good-bye and woke him up out of a deep sleep, his first words were: "Did you finish the puzzle?" Cute.
My brother Rich, his wife Marie, and I took my dad to dinner last night. On the way, he asked to stop at every store window as if it were the first time he had been on the streets of New York. He also had a comment about every person who walked by, often loud enough for them to hear. One very pretty and tall young woman came past us, with extremely short shorts. "That one has some pair of legs," my dad opined. Yes, she did. The dementia has not stripped him of his good judgment.
As we walked home, my dad was struggling to figure something out. That may be the saddest part of all this. One can see his mind turning over and over, yet nothing is making sense to him. He turned to us and said, "I guess as long as we are together, it's alright." That's exactly right, dad. That's exactly right.
EARLIER ON HUFF/POST50: 7 TIPS FOR CAREGIVERS
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.