7

 

“Where have you been?” Oh, boy, Dad’s aggravated.

Since I’m on a mission to foster a friendship for these two, I ignore his question and say, “I need your opinion about Nick, Dad.” Turning back toward the doorway, I call my dog.

As Nick slowly approaches, Dad squirms in his chair and draws back. His eyes widen and his breathing quickens. Just what does he think Nick is going to do? I don’t understand this fear. Perhaps it’s a manifestation of Alzheimer’s. I’m not sure it can be alleviated if that’s the case, but if I don’t try, our home will never have balance and harmony.

But when Dad’s eyes become unfocused and he further draws up his legs, practically folding into himself, I wonder if I’m making a terrible mistake. What’s the worst that can happen? The answer is, I don’t know. This is new territory for me, but I have to trust in Nick’s friendliness and Dad’s innate good heart.

“Dad, I think Nick has a problem with his hips. I’m going to have him walk away and then back toward us. Would you watch him walk and tell me if you think he’s in pain?”

His eyebrows draw together, deepening the lines between them. He slants his head and opens his mouth to speak, but no words come out.

“You know what it’s like to have hip pain, Dad, so I need your help in deciding if Nick is in pain.” Lame, (no pun intended) but I’ve got nothing else.

Taking Nick’s collar, I turn him around and ask Dad to watch him as he walks away at a slow pace, both going and coming. Dad is watching Nick, just as I’d asked him to do, but he’s still balled up and looking really uncomfortable. His knuckles are white from gripping the arms of his chair.

“Uh,” Dad says.

“Uh what, Dad?”

“Uh, can I go to the bathroom first?”

I do a mental smack of my head. Dad needed something and pulled it together well enough to call on the house phone. His sharp greeting of “Where have you been?” always precedes his need to go to the bathroom, and I regret ignoring him when I came in. For heaven’s sake, the man has been needing to go to the bathroom and he’s been holding his bladder while facing his fear.

Even under these circumstances, when his fear could have caused him to release his bladder, he’s holding it in. He hates those diapers so much that he’s willing to suffer extreme discomfort.

“Oh, Dad, I’m so sorry.” This “I’m sorry” isn’t a platitude. It goes much deeper and unsettles my heart because I have made voiding in a toilet an embarrassing issue for him. I’ve harbored it as my issue, my cross to bear, never considering the effect my attitude is having on him.

We don’t talk as we work together to get him into his wheelchair. He’s concentrating on holding it in, while I’m contemplative in evaluating my selfish motives.

Through the night, when he sleeps with the aid of a low-dose prescription sleeping pill, he isn’t aware of the need to go and his bladder automatically releases. He wakes up with a wet diaper, which embarrasses him. The extra pad I put inside his nighttime diaper keeps the excess moisture away from his skin, but sometimes he’s sopping wet. With Carmen or David here to help me first thing in the mornings, we have him shipshape in no time, and he soon forgets about the wet diaper.

But during the day he wants to go to the toilet. Of course he does.

Nick moves out of the way as I push Dad to the bathroom. Dog-and-Dad connection experiment—over. Failed. But where I’ve truly failed is in giving proper attention to Dad’s needs. He closes his eyes and sighs as his bladder releases. I’ve been in need of a bathroom enough times in my life to empathize with his sigh of relief. Many times I have stood in a long line, thinking I couldn’t hold it another second, but I did, because the alternative—letting go—was unfathomable. And so it is with Dad.

My shame deepens as I recall my aggravation at his stubbornness. How many times have I muttered under my breath about how inconvenient or physically exhausting it is to take him to the toilet when he could just use the diaper? And I didn’t exactly mutter; I made sure Dad heard. My attempts to guilt him into making my life easier have caused him shame and distress, and no doubt many moments of physical discomfort when he’s hesitated to ask because I’ve made him feel guilty.

Just now he held back his discomfort to appease me. What good can come of my complaining about the one thing he asks of me that maintains his dignity in the sole area he perceives he still has control? He has no control over any other aspect of his life. His diseases have robbed him of that. Having Alzheimer’s, which affects cognitive ability, and Parkinson’s, which affects motor control, means Dad is fighting a battle on two major fronts. Eventually, the two will join forces to totally vanquish the warrior.

Caregiving isn’t just about taking care of physical needs. It’s also about uplifting a person who, day by day, is becoming more helpless. Dad’s independence, which made him feel anchored and in control and dignified, has been stripped away and replaced with dependence that erodes his self-respect.

He is at the lowest point of his life because he depends on someone else to help keep his pride intact. His most important need, some sense of control over his life, is so much greater than any pill or nutritious meal. Not peeing in his pants is Dad’s final control-over-his-life mechanism, and here I’ve been trying to keep the gears from turning. Shame on me.

Inevitably, the day will come when he won’t even know he has to go. Until then, I will do all I can to help him keep his dignity intact.

“I’m sorry my distraction with Nick caused a delay, Dad. Whew, I bet you’re feeling a lot better. I know I do when I really have to go and finally sit down on a toilet. That’s just the best feeling, isn’t it?”

“I was about to burst,” Dad laughs.

“I bet you were. Yet you were still willing to be that uncomfortable to help me with Nick. You’re just wonderful, you know that?”

Dad lowers his head and remains silent as we finish up. As he settles into his wheelchair, he looks up at me and asks, “You love that dog a lot, don’t you?”

“I do.”

“Is he in pain?”

“I believe he is, but I needed your opinion. Still do.”

“Where is he?”

“Probably up in the kitchen with David. He’s fixing dinner.”

“Well, let’s go see about him.” Dad sets his face in determination. He’ll overcome his fear of Nick to help me. I almost overlooked another essential element that will make Dad feel vital and valid—to be needed.

 

 

“Where have you been?” David asks with genuine concern as I push Dad out of the elevator.

First Dad, now David. Next Nick will bark out the equivalent of, “Where have you been?”

Pushing Dad toward the living room, I tell David that I was checking Nick out and then took Dad to the toilet. I don’t embarrass Dad by mentioning his urgency.

We wheel right past Nick, but Dad ignores him. He’s already forgotten his determination to help me diagnose Nick’s pain. David helps me get Dad positioned on the sofa, then turns the TV to a sports channel as I head back to the kitchen. My dear husband has not only finished washing the veggies, he’s cut them up and has finished deboning the chicken.

After asking Dad if he’s comfortable, David joins me in the kitchen. He lowers his voice to say, “You should have called me to help with Joe. Don’t do it by yourself when I’m here. You have to do it by yourself enough when I’m gone.”

“It’s okay, I’ve just about got it down pat.” I keep my tone light so David won’t fret. “And Dad is able to help much of the time, so it’s not that bad.”

I serve Dad a gin and tonic and an appetizer of Spanish peanuts, and when I return to the kitchen David is mixing the salad. He tilts his head toward Nick, who’s lying on his kitchen bed. “So what do you think about Nick?”

“I think he’s developing a hip problem.” I reach for two wine glasses and fill them pretty darn full.

David accepts my diagnosis along with the glass of wine. “Poor guy. What do you think we should do?”

“I honestly don’t know. But I do know I need to take him to the vet, and she’ll have to X-ray him. That’s two-hundred dollars right there, but it has to be done. Plus, if there’s any prescribed treatment or medication, we’ll have to bite that bullet, too.”

That we would do anything less for Nick, even if it means sacrificing in some other area, is not even a consideration. I can put it on a credit card, even though it won’t be paid off as soon as the statement arrives. Knowing we can’t pay the balance each month as we’ve always done, we’ve talked about using credit cards only in emergencies. Even though Nick’s affliction isn’t an emergency, the cost of getting it diagnosed and treated is more than we can afford to dole out from the checking account this month.

“I think we’re at the point where we need to start buying box wine.” We’ve already moved out of our high-priced wine consumption and into the seven-to-ten-dollar-per-bottle range, and even though we normally only drink a half-bottle a night between us, it’s still a pricey indulgence. Box wine was always a joke between us, but now it has become a real possibility.

“We’ll figure it out,” he says, putting his arm around me and kissing the top of my head. I tilt my head up for a kiss. I can give up a lot of the finer things as long as I have this man’s love.

Dad is munching on peanuts and is engrossed is some sports commentary. I wonder if he’ll be able to feed himself tonight. He does better feeding himself when he’s settled into these happy circumstances, and it brings me joy to have him function at that level of competence. He seems most content when he’s with us. While I don’t think he has yet developed the fear of being alone, which is often true of Stage 6 Alzheimer’s patients, he is definitely more comfortable in the midst of our small family fold.

Nick has always had a place under the table but has been banished since Dad moved in. We’ve been feeding him downstairs so I can keep my promise to Dad. Normally, one of us would go down and do that while the other finished up dinner, but I decide to feed him in the kitchen tonight, as we did before. Dad needs to get used to his presence if he’s ever going to get over his fear.

Again I experience a pang of guilt, along with a swath of sadness, at the thought of Nick’s loneliness over these past few weeks. I tell myself Nick has adjusted, but that isn’t true. He’s a member of the family, and he’s been displaced. His sunny personality has begun to fade, although any time he sees my or David’s face, he gets that goofy grin and his tail wags in anticipation of whatever we have to offer—a pat on the head, a sweet word, a tasty treat, a belly rub, or—joy of joys!—a ball-throwing session.

“David, while I do Dad’s blood check and get his insulin ready, would you please go get Nick’s bowls and feed him up here?”

With a conspiratorial smile, he says, “Glad to,” before heading down to the garage.

I reach into the refrigerator for Dad’s insulin, which we keep both downstairs and upstairs. I prepare the glucose meter and then grab a syringe and the insulin, plus an alcohol pad, and head into the living room.

I swab his finger and stick it with the lancing device on the glucose meter. I hate puncturing his finger to get a blood-sugar reading, but it’s vital that I don’t give him too little or too much insulin. His reading is in the normal range, so I load the syringe with only four units of insulin, enough to keep his blood sugar level.

When he sees the syringe, he fumbles with his shirt to pull it up over his stomach, where I give the injections. His eyes are glued to the television and he isn’t even paying attention as I wipe the area with the alcohol pad and inject him. I learned a long time ago, when I started caring for Mother, that not inserting drama and apologies into must-do medical procedures makes it less anxiety-inducing for everyone.

In the kitchen I pop the used lancet and syringe into the biohazard disposer David drilled into the side of the kitchen cabinet, then set the table.

As I’m plating the salad David comes through the door with Nick’s bowl and tells him, “Dinner time.” Nick scrambles to his feet and charges toward his dinner.

Dad doesn’t even notice. Progress!