A Farewell to Dad

He wasn’t the best father, but he was my father.  When my sister called and asked me to accompany her and my brother to his deathbed, I went, even though I hadn’t spoken to my dad in 22 years. I did it, I thought, for my siblings. Turns out I really did it for me.

Our family picture after the death of my oldest brother, Rod.

Our family picture after the death of my oldest brother, Rod.

When we entered the room where my dad lay dying, he looked exactly like his father had 22 years before. His head, covered with silvery gray hair, was thrown back on the pillow, his mouth gaped open, and harsh, irregular breathing filled the room.  Though the nurses said he could hear us, he was unresponsive.

Unlike my grandfather, who died at home in his living room, my father began his death in an intensive medical care unit. Outside the unit a sign warned us to wear masks due to a flu outbreak.  He was on contact precautions so before we entered his room we added gowns and gloves to the masks that covered our faces. The constant beep of monitors and the intrusion of nurses to empty his catheter, titrate his medications, and turn and position him widened the space between us and him.

It was hard to break that space.

The death of a parent, even a parent that never embraced the traditional role and remained more of a Peter Pan man-child than a King Triton type of dad, is hard. When it’s a father you’ve only seen from a distance for the past 22 years, one you’ve ducked down grocery store aisles to avoid and maintained at least a one room separation from at family gatherings,  it’s a little harder.

In Al-Anon they say one can detach with love or detach with dynamite. I’d always seen my choice, dynamite, as irrevocable.  As I smoothed his hair, wrapped his hand around mine, and reminisced about our shared past, I realized I was wrong.

Even though it was too late to repair the damage done to our relationship, it wasn’t too late to remember the good times we once shared.

In the time we spent alone, I played him the songs we knew together and the ones I’d grown to love since then. Kenny Chesney sang “Boys of Summer” in the background and I talked about fall in New Hampshire, football games my older brother played in, and towns we had rivalries with. Willie Nelson crooned “Always on my Mind” while I told him about the toast  my youngest gave at her sister’s wedding and how it reminded me of him. Craig Morgan sang “Almost Home” as I retold stories of the friends and family that had predeceased him. Over and over, I told him it was okay to let go.

But, he hung on.

The palliative care nurse practitioner said he wouldn’t survive once they stopped the medications, but the medications stopped and he didn’t. Then they said the ambulance ride to the hospice might kill him. One last road trip, I murmured as the stretcher rolled into the Florida sun and bumped up into the ambulance, yet still he hung on.  We can keep him pain-free, they said at the hospice, but it might hasten his death. It doesn’t matter, we told them, yet in spite of the pain and anti anxiety medicine, he breathed on. We sat by his bedside and laughed, prayed, told stories, cried. We watched him take one agonizing breath after another and we held our breath each time they stopped. But he kept breathing.

It wasn’t until late the second night, with all of his children around his bed, that he opened his eyes, took one last breath, and died.

My clearest memory of childhood is my father’s lectures at the dinner table. He’d tell us look around this table, these are the only people you can trust. These are the only people who love you unconditionally and will love you even if you grow up to be a murderer, a rapist, or a thief. For years I joked about his low expectations for us instead of focusing on the other part, how much he loved us and how much he wanted us to love and look out for each other.

Perhaps he hung on to make sure we’d learned the lessons he’d taught us. Even me, the daughter who had ignored him for 22 years.

If we get to make our own heaven, I have no doubt he’s in a place where the Jameson flows freely and the stories and laughter never stop and he is surrounded by people who love him.

He wasn’t the best father, but he was my father, and, in the end, I loved him still.

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Can You Hear Me Now?

Vaseline Glass Bowl-Hat

Vaseline Glass Bowl-Hat (Photo credit: Paul Garland)

When I was younger, I thought wearing glasses was the biggest humiliation I would have to suffer. Without glasses I can’t see the computer screen I’m sitting in front of, but glasses have a downside. In cold New England a walk from the chilly outside to toasty inside results in a thick layer of condensation that renders glasses wearers temporarily blind. In the summer, going from air conditioning to humidity does the same thing. Aquatic endeavors require a decision to either see what’s going on (my preference in a lake) or swim blind (my preference in the ocean. I believe if I don’t see the shark, it won’t see me).

PhotonQ-Under the Shark

PhotonQ-Under the Shark (Photo credit: PhOtOnQuAnTiQuE)

I’ve made my peace with wearing glasses, but now I’m confronted by a problem many of my fellow baby boomers are also facing,  hearing loss. Yes, we didn’t wear helmets when we biked/skied/played sports and we didn’t wear hearing protection when we shot guns, listened to our Walkmans at full blast, or spent time in noisy environments. Our youthful ignorance of the damage caused by loud noises has led to an explosion in the number of baby boomers with hearing loss.

The National Institute for Health reports that 18% of adults in the 45-64 year old category, have hearing loss. The percentage of Americans with hearing loss increases in the 65-74 year old group to 30%, and for adults over 75, a whopping 47% of them are struggling to hear.

How many of those hearing impaired people are wearing hearing aids? Less than 15 percent. There’s a lot of people out there who have no idea what you’re saying.

Seems like a minor problem until you read the early studies that indicate adults with hearing loss are 3 to 5 times more likely to develop dementia than those with normal hearing.

Scary.

So why don’t we embrace hearing aids in an attempt to increase our thinking skills and ward off dementia (as well as not blowing out the volume controls on the TV)?

Hearing aid

Hearing aid (Photo credit: Soitiki)

Maybe it’s because hearing aids are equated with old people and we’re a nation dedicated to never growing old.  Not all of us can afford facelifts, botox, or tummy tucks, but we can dye our hair, buy anti-wrinkle cream, and pretend we can still hear.

And most people don’t know how much sound they’re missing. When I trialed hearing aids, I couldn’t believe what a noisy house I lived in. The refrigerator cycled on and off, the dryer had a strange squeak, and with the windows open I could hear my neighbor’s children playing outside. All sounds that hadn’t existed for me before the hearing aids.

I wanted to turn the volume down.

But without hearing aids I struggle to carry on a conversation in certain decibel ranges. I lean in closer and keep a semi smile on my face because I’m not sure if the correct response is to laugh or to  cry. Most of the time I can piece together what’s being said through context, but once in a while I can’t. It’s embarrassing when someone asks me a question and I don’t understand enough words to even guess what they’re saying. It’s like suddenly I’m hearing a foreign language and my ears can’t process it.

As easy as it is to downplay hearing loss or make a joke about it, the sad truth is that it has a profound effect on quality of life and, it seems, the risk of dementia. Maybe instead of being fixated with the idea that wearing hearing aids makes us old, we should think about all of the sounds we miss without them. If it’s a choice between hearing my daughter whisper “I love you” as she leaves the house or looking and feeling old, I think I’m going to choose to hear.

There’s only a finite number of “I love you’s” we’re privileged to hear and I’d like to hear every single one of them.

Not Dealing with Dementia

 

June and Ward Cleaver (Barbara Billingsley and...

June and Ward Cleaver (Barbara Billingsley and Hugh Beaumont). (Photo credit: Wikipedia)

Television moms and dads are kind, generous, clean, independent, and a source of wisdom. Real life moms and dads can be mean, self-centered, critical, and looking for a handout.  Such is the cards some children are dealt.

 

Dementia

Dementia (Photo credit: Fulla T)

These abusive moms and dads don’t miraculously turn into saints as they age, either. Most of the time the dysfunctional behavior they’ve exhibited worsens, rather than improves, as they age. If they’ve abused drugs, alcohol, or neglected their health, they may get much worse.

 

What to do when bad mom or bad dad (or both) are no longer functioning well at home alone? I don’t mean the not able to shovel out their driveway or lift the air conditioner out of the window type problems. I mean when they think strangers are coming in through the drainpipes and they think one of the intruders stole their gun. That scary not functioning well may be dementia.

 

Dementia is a broad term used to describe difficulties in the areas of language, judgment, behavior, thinking, and memory. Some causes of dementia, such as metabolic disorders and tumors, can be reversed. Other causes of dementia, such as Alzheimer’s disease, can only be slowed down, not cured. Repeat, not cured.  Pay careful attention to the part of the happy pharmaceutical commercials that caution,  “All patients will get worse over time, even if they take wondrous dementia drug.”

 

If you’ve had a great relationship with your parents, filled with mutual respect and assistance, it’s easy to say you’ll do whatever it takes to keep mom and dad safe. Even if it means moving them out of the home they’ve lived in for the last thirty years. Even if it means hiring someone to stay with them so they don’t burn the house down. Even if it means hiding the car or car keys to prevent them from driving to their favorite store that went out of business twenty years ago. Even if it means taking time off from work to accompany them to doctor’s appointments or leaving work early to rush home to deal with emergencies.

 

But if you haven’t had a great relationship with your parent, maybe haven’t even talked to them in five, ten, fifteen, or twenty plus years, what’s your responsibility when the neighbors start calling with their concerns? Do you forget the past and hope they’ll become nice? Put on your martyr uniform and hope for the best? Make an anonymous call to Elder Services and wash your hands of it?

 

There is no easy answer to these questions. Letting your conscience be your guide doesn’t mitigate the guilt that comes with the decision to keep your distance from a demented parent. If you decide to re-engage with the parent, there will still be the resentment that comes with putting your own life on hold to care for a parent who never cared for you. It’s an intensely personal decision that each adult child must wrestle with and decide based on all of the myriad considerations and individual details of their life. If you do decide to ride to the rescue, don’t expect the parent to be grateful for your efforts. Age doesn’t make people any less dick-ish, nor does dementia.

 

As someone who has wrestled with this issue, rest assured I don’t take my abandonment of my parent lightly. There’s a better than average chance that I am the best suited of my siblings for understanding and navigating the complexities of having someone declared incapable of making decisions to pave the way for admission to a nursing home. Not just because I’m a nurse, but also because I’m the oldest. Unfortunately I can’t forget or forgive the toxic parent-child relationship that ultimately ended with my decision to stop speaking to my parent over twenty years ago. I can’t let that go, even though part of me says it’s my duty and part of me feels incredibly guilty that I can’t caretake this person who can no longer caretake themselves.

 

I won’t deny that seeing my parent in their current state, even from a distance without saying a word or them being aware of my presence, breaks my heart. I wish I could find it within myself to soften, bend, and do what some would insist is the right thing. But I can’t.

 

And as much as I salute those who can, I acknowledge that there are those of us who can’t. Age and infirmity doesn’t turn a toxic parent into a saint, it only turns them into a old, sick toxic parent. Don’t judge me for turning my back.  It’s like they say when you fly, if the oxygen mask drops down, you have to put it on yourself before you can help someone else. Unfortunately my parent has demonstrated that they would suck up all the oxygen in my world if they could. As bad as I feel about their condition, I won’t let them.

Day 3: flight to Yazd - inflight safety card

Day 3: flight to Yazd – inflight safety card (Photo credit: birdfarm)

 

Mother Knows Best

Scratching

Scratching (Photo credit: ☺ Lee J Haywood)

 

My mother has always been a blunt, no-holds-barred giver of advice.  Her circle of friends is small, her capacity to remember slights limitless. To say she’s a little on the suspicious side is an understatement. She believes there’s two kinds of friends, friendship and friendshit. Her favorite saying concerning friendshit is,  “If you lie down with dogs, you get fleas.”

 

When you grow up with a cop for a mother, there’s not a lot of sympathy for stupidity.

Since I’m not psychic, I can’t tell at the start of a relationship where it will end up. Like courtship,  the beginning phase of a friendship is all about showing off our good sides and covering up our imperfections.  There’s that unquenchable hope that this time someone finally gets me.  The passage of time, though, can wear down the patina of initial niceness.  A cheap person can only buy a round of drinks so many times before they stop offering. A dishonest person can only fulfill their obligations as long as they can stave off their basic impulse to lie. A self-centered person will try to act like it’s not all about them, but in the end, they’ll insist it is.  That’s the point when you realize you’ve been lying with a dog and the itching you feel isn’t your new hand soap or poison ivy, it’s fleas.

 

Most of my life, I’ve followed my mother’s advice and steered clear of unsavory or people liable to get me arrested. Unfortunately those around me have not. One contractor friend of my husband’s has proven to be a persistent little puppy. During the initial phase of the friendship, he installed outside stairs, remodeled our bathroom, roofed our house, and installed replacement windows.  His rates were reasonable. We knew him. My husband counted him a friend. You’d think that would guarantee a job well done. Wrong.

 

Yes, we knew the contractor’s past jobs included  a string of small claims cases and customer complaints.  Yes, I balked at how he always wanted half down to start the job (which basically consisted of his taking the money and parking some equipment at our house) and seemed to be running a Ponzi scheme to pay for supplies and help. Yes, his initial job (a stairway) didn’t meet code and his second job (replacing a roof) started a year-long saga to find the leak we didn’t have until the new roof was in place. And even though he didn’t have a clue as to how to install a corner shower, it didn’t stop him from doing it. No amount of caulk has stopped the leaking in the subsequent two years.

 

Did I mention it takes superhuman strength to close and lock the replacement windows because they don’t quite line up? It doesn’t take skill to do a shoddy job, but it takes a special kind of incompetence to create new problems. Small wonder that when I finally took charge of hiring contractors, his name didn’t make the list.

 

Bad Carpentry!

Bad Carpentry! (Photo credit: Yuba College Public Space)

I still do a slow burn every time I enter the bathroom and realize I’ll eventually need to hire someone to pull out the shower and start again. I get a little hot under the collar when I watch part of the roof lift up and vibrate during windstorms. I curse loudly every time I have to hang on the lower window while pushing the upper window up to try to latch them for the winter. Giving him multiple opportunities to do something right became the punishment that keeps on delivering. If I’d heeded my mother’s warnings, after the first job I would have moved away from him as far and as fast as humanly possible.

Instead, I let myself become lulled by excuses and didn’t take appropriate action when I identified him as friendshit. If I had washed my hands of him early on, I wouldn’t have to walk around my house now and see the equivalent of toilet paper on my shoe everywhere.

But, just like you can’t blame fleas for biting you, you can’t blame shady people for taking advantage. Even if you think they’re friends. Which leads me to another lesson from my mother: Screw me once, shame on you. Screw me twice, shame on me.

Ignore my mother’s advice at your peril.

 

Will you still need me, will you still feed me when I’m seventy-four?

When my daughter was younger, she said she loved me so much that when I was old she’d get a wheelchair and push me wherever I wanted to go. Her sister said she’d push me off a cliff. I was in my early thirties when this conversation took place and since then I’ve wondered who will take care of me if I become old and infirm.

As part of my nursing education, I spent a fair amount of time in nursing homes. Afterwards, as a new nurse, I worked in hospitals. Both of these experiences convinced me that the majority of the elderly were frail, sickly, and unable to live on their own. It depressed me.

In the nursing home, the patients with dementia were the most labor intensive. One birdlike woman practically lived at the nurse’s station. She’d yell to each passing staff member or visitor, “Hey, lady. Hey, lady. Get me out of here. I have to go home.” Her idea of home was the home of her childhood and she’d often continue with, “my father will be mad at me. I’m late. Get me out of here.”  Sometimes I’d want to loosen her restraint and take her to this home that was still alive in her memory. Other times I’d sneak around so she couldn’t see me and ask me to help her. What I remember most is that no one ever visited her.

In the hospital, dying patients needed the most resources. Mouth care, turning and positioning, constantly assessing their level of comfort and providing medication were all involved in “aggressive comfort care”  as opposed to “comfort care only.” We knew we were fighting a losing battle, yet wanted to be proactive in preventing further complications and keeping the patient pain free. Sometimes family members would stand vigil, many times the nurses were the only silent witnesses to the winding down of a life.

It wasn’t until I worked in outpatient care that I realized many older patients were self-sufficient, active in their communities, and living at home without assistance. They didn’t need the services of a nursing home and, if they were lucky, the end of their lives happened in their home rather than in a hospital or ambulance. It gave me hope.

As my parents inch past seventy-five, I’ve also realized how many of the elderly live in their own homes and struggle to maintain their dignity while dealing with limited resources. There comes a time when you realize mom or dad isn’t able to manage their own life as they once were. I think that realization, for most children, is slow in coming and it takes even more time before the children try to step in and help.

Why is that? I think on some level we’re ashamed to acknowledge our parent’s physical problems. Intellectually, I understand that the elderly have a decreased sense of smell, touch, vision, hearing and taste. They may not notice the smell of spoiled meat, not see the stains on the dishes they’ve washed, not be aware of the loudness of the television while they’re talking on the phone, and eat the same food day in and day out. Their mobility is limited due to  loss of muscle, disuse, and degenerative diseases like arthritis. Their bowels don’t function as regularly as before. Their skin is easily damaged and slow to repair.

And most of us are busy, damn it. We have children graduating from college or getting married or having their own babies while we try to pay off parent PLUS loans, boost our 401k’s,  keep our marriages or relationships strong and maybe even find time to fulfill our own dreams. All this is going on while our parents start a slow decline and insist they can take care of themselves. They don’t want to be a bother.

So where do we put our time and effort? Into the problems we can fix. Babysitting grandchildren, advancing our careers, spending romantic time with our significant others, doing the things we always meant to do that we now have the time for. And the more our parents say they’re fine, we shouldn’t bother,  it’s no big deal, the easier it is for us to defer to their fine judgement and leave them to their own devices. I mean, really, they’re our parents.

Until the day we go over to their house and realize that they aren’t doing okay. They need our help. All of the things they did for us and taught us to do for ourselves have come full circle. They need help to wash themselves up and keep themselves clean. They need someone to monitor their meals and make sure they’re eating enough high quality food. They need someone to dry them off and look for signs of skin breakdown and intervene early. They need someone to clean their house, check the outdates on their food, and drive them to appointments. Much as they helped us to transition from dependent child to independent adult, we must now support them as they transition from independent adult to dependent parent. It’s not fun.

And for me, and I feel shame as I write this but I suspect others feel as I do, it is hard. It is hard to remind a parent to shower, to go to the bathroom, to wear a depends pad, to take their medications. It is hard because we now become the parents of the person who parented us. It is hard because we know deep down inside that our parents would never want us to see them as weak and in need of help so we must thrust ourselves into their lives and do it matter of factly and decisively. And we must somehow reconcile the parent of our minds, the strong, vibrant, healthy person we remember, with the person they have become from no fault of their own other than the passing of the years. And then we must love them and help them, all the while protecting their dignity and sense of self.

It’s a damn hard dance to do.

But still, I see adult children who do it every day. They stand by their mothers and fathers in the most intimate and embarrassing situations with a grace that doesn’t come from socioeconomic status or education. It doesn’t come from religious guilt or dreams of inheritance. It doesn’t come from a sense of obligation or duty or even payback. It comes from love.

And every time I see an adult child performing the most personal care for their parents with a smile and the attitude that it’s not a big deal, I am humbled. The question isn’t who will take care of us when we age, it is how we can do the right thing for the people who have done so much for us

Pat, August 20, 2011 - Curb

Pat, August 20, 2011 – Curb (Photo credit: pat00139)

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