Category Archives: aging

Less Than

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Less Than

My emotional bandwidth is full at the moment. The world seems to be a swirling mass of chaos and I cannot process one more thing. My father died a couple of weeks ago and I’ve been trying to find my footing ever since, I’m still shaky. We weren’t close, we weren’t estranged, we were somewhere in-between, a relationship on hold. A quick call on birthdays and holidays, a visit or two throughout the year and lately one or more of those visits was in a hospital room. I always tightened my stomach before dialing his number, it never got easy, but I kept trying. Walking through the awkward became somewhat less traumatic yet, it never vanished.

Our relationship went off the rails the summer I was 9. My twin brother and I were back in New Jersey after living in Florida for a year. Before we moved, there was a custody case, mom won and promptly took us away. While we were gone, we would get weekly calls from our father and stepmother telling us how much they missed us and couldn’t wait to see us again. We believed them.

We made our way back to New Jersey and were visiting a family friend who lived around the corner from our father and stepmother. My brother and I went to the house, excited to see them. We could barely contain ourselves, wouldn’t they be surprised! A somber version of our father emerged and coaxed us away from the door and sat us down on the front steps. I don’t remember his exact words but the gist of it was – you can’t just come here unannounced, I have a family now. I’m sure it had something to do with his baby daughter and a wife that wanted to contain the crazy. Looking back I can see where the man had been put through hell. Trying to get custody, losing that battle, then his insane (certified) ex wife takes his kids to Florida, it must have been an emotional roller coaster for him. I lacked that perspective then. What I heard was I don’t want to see you and then it all faded to black.

I think my little psyche had been through too much at this point so I just shut down. Florida was a nightmare and I had witnessed far more than any child should. If he didn’t want us to visit, then fine I wouldn’t want to be there. I flipped a switch, threw up a wall, deployed the shield. My brother, God bless him, he handled it different. He just tried harder to get the man’s attention. For years, decades even, it was like watching an animal stuck in a trap trying to get free, wailing in pain with each pull of a limb. I avoided the trap.

My father and his second wife had 5 children. They raised them Catholic, took them to church every Sunday and didn’t mention the fact that they had half siblings. My brother and I would visit our paternal grandmother who lived 4 houses away from our father and he would not stop in to visit. A whispered hush fell over the town when we would visit, “those” kids were around. Our uncle lived next door to our father, we could hear our siblings laughing and playing outside while we were across the street. They didn’t even know we existed. I guess the plan was that eventually we would give up on every paternal relative but we didn’t. We kept showing up and at some point our father and stepmother had to tell the other kids about us. Is this the Christian way to raise a family? I mean I don’t go to church too often but this seems a little off, but I digress.

We never had a conversation about this. I wrote him when I was 21, suggested that we  get to know each other. I acknowledged that I had not heard his side of things. He never responded to that letter. In our late twenties my twin and I would see our father and his family at events for extended relatives, things started to thaw.

Back to Dad…

In mid September he went in for a test, that test resulted in an error which required a surgical fix. I went to visit him on a Wednesday, they were talking about discharging him, this was 5 days after his surgery. We did our usual small talk, I showed him digital pics of my kids from a recent trip, we listened to the weather channel. A somewhat bland visit, it was to be our last conversation. Oh how I wish I could redo that chat. The next day he went into cardiac arrest, 5 days later, he was gone.

Those days went by in slow motion, somewhat suspended as we sat in a CCU waiting room, anxious for the next update. I was there with four half siblings, my father’s significant other and other relatives that would stop by. I participated in conversations about his medical directive and eventually we got him transitioned into hospice. I’ve been a hospice volunteer for ten years so I was familiar with the process and knew which questions to ask. He died within 20 minutes of having the ventilator removed, per his wishes which he declared in an Advance Medical Directive. He was surrounded by people that loved him in his final moments and it went about as well as these things can, it was still awful.

I knew the wake would be hard for a variety of reasons. Of course there is the grief of losing a parent. If you’re lucky, you have a lifetime of memories to cherish, inside jokes, and special moments that live in your heart. My memories are scarce and tainted by abandonment, unanswered questions and decades of denial that I wanted, no, needed a father. No more do-overs, mulligans or second chances, in that regard, hope also died. Hope that somehow, someday, somewhere, someway, the awkward yet necessary conversation will happen, it won’t. It never will.

That’s a lot to take in when your standing in 4 inch heals for five hours straight on the back end of the receiving line for your dead father.  He was flanked by honor guards, standing at attention. Honor guards, and some people looked confused as they were trying to sort out my role. I was his oldest daughter, twin to a brother that bore his name and I had to explain that dozens of times throughout the wake. It’s not the first time someone has said “Oh, I didn’t know he had an older daughter”, perhaps it will be the last.

Of course there were pictures. Pictures everywhere of a life I never lived. A seemingly happy family with 5 kids and two parents in matching Christmas outfits, funny birthday shots, tons of beach and bay photos filled with beautiful people on sunny days. I forced myself to put a memory board together and only found one photo of us from my son’s Christening 15 years ago. I filled the board with twin baby and toddler pictures of my brother and I. Then I added some random beach shots of my kids in the town that my father lived in. It was pathetic and sad and I insisted on doing it, I needed to be in that room. I needed my kids to be there too, forced inclusion at it’s lowest level.

The pictures were of particular importance. Nearly 20 years ago, my stepmother died in a car accident. We had just begun to heal our broken relationship when she died suddenly and that wake had a thousand pictures filling the room. My brother and I weren’t in one, believe me we searched with bloodshot eyes, not a single picture. At one point, I needed to leave that wake because I was so overwhelmed by grief of the life we never had with them, it was palpable and I was choking on it. Then 4 years ago, our father’s youngest son died. Another wake, more pictures, more despair, this family has been through hell.

After 5 hours of standing in line, trying my best to look less broken, we were asked to sit. I sat in a chair which was off to the side, it was closest to the casket and gave me a side view of the speaker. An elderly man, a chaplain from the firehouse, who gave a very passionate speech which at times, felt like a personal challenge.

Man: “He was a GREAT man, a great man!

(OK, stay calm this will all be over soon)

Man: “He was the best if you had a problem with him, then that was your problem!”

(Are you challenging me old man. Oh FFS, I saw him beat my mother, he abandoned his first two kids, didn’t pay child support and was likely a neglectful parent to his other kids after his second wife died, he was a serial cheater and probably an alcoholic)

Man: “We will all miss him so much. Truly, a great man (sniffs).”

(Maybe I was the asshole, everyone says he was great. This send off feels like a canonization. Dear God, was it me, was it my fault??? Table that for later…)

The wake was followed by a dinner with a large crowd and it was as nice as these things can be. I truly enjoyed spending time with my brother, niece, nephew, uncle, aunt and half siblings. I don’t know them well, yet I feel a pull towards them. An inexplicable pull that goes beyond having compassion for people that have been through some serious shit of their own.

The funeral was on a Monday and it was as if a Statesman had been laid to rest. His flag draped coffin was placed on the back of a vintage fire truck. Uniformed firefighters saluted his coffin, bag pipes wailed as the church swelled with people. I had to keep reminding myself to walk tall, shoulders back, head held high, looking straight ahead, like an android in mourning. I treated this like a last wish, playing my part in this orchestrated event. After the mass, his casket was placed back on the fire truck and  paraded past the places he frequented most. Cops closed off intersections to let the procession cars go through red lights. Surely, a legend had died, a great man forever sleeps.

The next day the sibling in charge of our father’s estate sent out a group text outlining the details of the Will. Yup, a group text which was sent while my twin was mid-route of his multi-state drive home. We were clearly not the favorite kids that hunch became tangible as some of the finer points were laid out. The house would go to the four kids from the second marriage. That was expected, in fact our father told us his intention in regard to that property. My twin was hurt, I was somewhat indifferent, it still stung a little. Another property with individual components would be divided 6 ways. Wait, there’s a catch, sales from the property being divided 6 ways would first go toward the house mortgage, any remainder would be divided six ways. (Geezus, do I owe money at this point?)

Imagine a pie – perhaps it’s blueberry, pumpkin or custard – it’s your pie, imagine whatever you want, no calories, so YAY! You need to share that pie because sharing is good. Right off the bat 2/3’s of the pie go to the younger 4 siblings. That’s OK 1/3 of the pie split 6 ways is still a delicious little sliver. But before you get your sliver you need to reduce it some more and give it back to the younger ones (the ones Daddy loved more) and you’re left with…crumbs. Crumbs and a bitter taste in your mouth because he didn’t warn you about that bit and clearly a lot of thought went into it.

So for the past two weeks I’ve been cursing at ghosts. Grieving the childhood I didn’t have, feeling my brother’s pain along with my own. I am determined to get through this, lose the bitter taste in my mouth and get on with it. I’m just not there yet, there’s no manual for this.

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Finding my Way

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Finding my Way

65, 52, 47, 76, 83, 77, 68, 47, 49, 42, 42, 42, 39 I watched the numbers change like a heartbeat roulette wheel and I was betting heavy on black. Wishing for a different outcome and dreading the likely one. Praying it wouldn’t take that long, mouthing words of comfort, rubbing my father’s arm, listening to the sounds of tears and gurgling breath. I watched my father slip into the big sleep and still managed to be shocked when the nurse pronounced him. He is gone, it shouldn’t have gone down like this.

He went in for a routine test and things went terribly wrong from there – abdominal surgery, cardiac arrest and ultimately death. He was a firefighter, a first responder, he should have died in a fire, saving someone, or on the bay doing a water rescue. It was at least 15 years too soon, he left us brain dead for days before his final departure. A situation that caused his children from two marriages to come to consensus on his care and arrangements. Unlikely as it is, that has been the easiest part of this mess. His children are amazing, each and every one.

I feel robbed, I’m angry. I’m many things right now, anger is the easiest feeling to process. She keeps the depression an arm’s length away. Well she tries, the feelings seep in on their own schedule. I’m experienced enough to know that grief comes in waves. Sometimes those waves pull you under until you can find your footing again. Then you try to get yourself off the sandy bottom, wobbling into an upright position to face the next round. Sometimes you can anticipate the wave and jump up into the big one and ride it to shore. Be careful, if you turn your back on the ocean, those little waves can knock you down when you least expect it. My father didn’t give me much life advice but I do remember this, never turn your back on the ocean.

 

 

Broken

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Broken

Sometimes you stumble your way through the dark on an unfamiliar path trying to  discern the next right step. In my experience, these paths are riddled with emotional land mines. You anticipate the boogeyman when he jumps out in front of you. When you hear the creepy music, you don’t have to turn your head to know someone is behind you. Then there’s the stuff that blindsides you and takes you to your knees, the unexpected hits you never saw coming. I’ve had a week of those.

The days are blurring together and feel oddly suspended as they do when things get awful. Some slow motion version of life settles in as you try to adjust to the new normal, which is anything but typical. On Wednesday, I went to visit my father in the hospital and they were talking about discharging him. Then on Thursday morning, he went into cardiac arrest and he’s been in a coma-like state ever since. The prognosis is grim and now we wait for things to change in some new direction. Waiting for milestone hours to pass; 24, 48, 72 and we continue to wait, and wait and the days feel like weeks and every so often the physical/mental/emotional exhaustion comes over you like a tidal wave. It feels a lot like drowning, minus the water. I’ve been dry drowning.

This situation is awful enough on it’s own and yet, there’s more. Five decades of an on again/off again father-daughter relationship, half siblings, a beloved twin who is far away, a history of family tragedies and what can I say, it’s complicated. I’m the oldest of seven, one of the two from the first disastrous marriage. The other siblings are from my father’s second marriage. His second wife died in a car accident in 2000. His youngest child died by suicide a handful of years ago. The pain this family has experienced is enormous and I feel like a ghoulish outsider with unfettered access.

As I’m getting older, friends and loved ones have lost parents. Sometimes I wonder what it would be like for me when the time came. I no longer resent my father for what he did or didn’t do when I was a child and yet, we aren’t especially close. Not a conscious effort to stay separate, it just became easier to chose other priorities. I’ve also tried to insulate my children from the dysfunction of my childhood. There is a lot of my personal history that they don’t know yet. As they are getting older more is coming to the surface but not everything.

I’m a strong person, been through plenty of my own shit and always came out the other side on top. I’ve beaten odds that no one could’ve predicted. If younger me was a horse in a race, no one in their right mind would have bet on me and yet I placed. I found my way into the winner’s circle, against all odds. I thought I would be somewhat disconnected when dealing with my father’s mortality, I was wrong.

Yesterday I felt hallowed, a husk of a human who had their innards scraped out. An emptiness that was dark and consuming, a black hole from within. It took me by surprise and I had to yield to it. I could not leap through this particular ring of fire, I had to stand in front of the flames and watch it burn. Eventually I had to accept help and let my husband and kids join me at the hospital.

In the middle of my pain, I imagined myself as a plate made of fine china with an intricate pattern. Seemingly intact, functional and somewhat pleasing to behold. Upon further inspection a hairline crack is discovered, the kind that can cause the plate to break if it is not handled in a delicate manner. If you feel the edges on the backside the chips reveal themselves and you know this plate has been compromised. It makes me wonder if the damage is visible to an outsider. From a distance, it looks good but up close, you can see it’s damaged and on the verge of being broken.

 

Writing Prompts

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Writing Prompts

When you feel vulnerable everything is a writing prompt. Sometimes the thoughts just swirl in my head, marinating until they become a somewhat tasty morsel that spills onto the screen. Not enough for a meal but, with any luck it leaves you hungry for more. Most times though, those prompts just wither on the mental vine. Here are some seeds that are lying on the bare ground, waiting for neglect or nurture to determine their fate.

Backstage Pass

My father is in the hospital again. He’s been in several times this year for various illnesses. We aren’t close and that’s not likely to change. He was out of my life from when I was 9 until sometime in my 30s. Too late for strangers with nothing in common to cling to – I say that with sadness, not hostility. We’ve both made attempts to bridge the enormous obvious gap, we just haven’t found the right the platform.

I find out about his health via group texts from his longtime partner. She’s devoted to him and very kind, which is comforting. It’s just awkward. The man had 7 kids from two marriages. I’m the first born but last in the pecking order. When I do get informed, it’s like having a backstage pass for an act you don’t know.

What’s Normal?

My kids recently went back to school and I feel myself being consumed by my own anxiety for them. I’m outing myself in the hopes that it will get me to ease up a bit. I have two teenagers and I can’t help myself, I think of what I was doing at their ages. Then I wonder, is it normal for parents to do this? If you’re a parent do you reflect on what you were doing when you were the same age as your child? Seriously, this is not a rhetorical question, I don’t know what’s normal.

For the Ladies

You ever get your period and think “Oh that makes sense” as you flashback to the night before when you ate half a chocolate cake and contemplated life with a new identity.

Hospice

A friend asked me how I deal with the mental mind f*ck of caring for people on hospice. This is what I wrote to him:

Hospice is a weird thing. I think what draws me in is the lack of bullsh*t. The small stuff and pettiness that most humans get tangled in tends to fade away when someone has a newfound awareness of how finite our time is here. I appreciate that level awareness and honesty and I get into a – do the next right thing modus operandi. It’s more difficult with people you know versus volunteering for strangers. I’m pretty good at compartmentalizing though, one of the benefits of a dysfunctional upbringing.

There is also a curiosity that pulls me in. I kind of want to know what it’s like at the end of life – I mean, we’re all going to die one day, yet people rarely discuss it. Or maybe my twisted brain thinks…if I am a witness and a helper for so many at the end of their lives, perhaps I’ll be granted a swift departure when my time comes. I don’t want to be subjected to weeks or months of Depends and really dry, chapped lips. So basically what I’m saying is….there is no way to delay the existential head f*ck, you just have to lean into that motherf*cker.

 

 

 

*Featured image used via agreement with 123rf.com image is Copyright of Sila Tiptanatoranin

 

Demanding to be Seen & Heard While Wrapped in the Cloak of Invisibility

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Demanding to be Seen & Heard While Wrapped in the Cloak of Invisibility

A recent Facebook post in a group for midlife women asked members to comment with their term for the phase in life between ages 45 and 55. For the record, the author of the post prefers midlife meltdown. Up to this point I hadn’t thought of anything original until I read the post and subsequent comments. I let it marinate.

First I reflected on this phase as a work in progress with more self acceptance than prior decades. Some members were elegant – metamorphosis, renewal and awakening were tossed out like flower petals on a soft meadow. One of my favorite responses was the “F*ck it phase”. I gave it some more thought and landed on the title of this post – “Demanding to be Seen & Heard While Wrapped in the Cloak of Invisibility”.

I recently turned 50 so I am in the sweet spot of the poster’s demographic. I find myself balancing opposite ends of the spectrum – acceptance/discontent, reclamation/ surrender, clumsiness/grace. In short, it’s a mixed bag. I am aware of my short comings, of the finite amount of time we all have and yet there is this spark, indeed a renewal of sorts.

In collective society I have become less visible. This happens to women as the radiance of youth is replaced by the fine lines of wisdom. Once the skin suit we inhabit becomes less appealing to the masses, we blend in until we are barely visible.

Here’s an example, our family used to frequent a local restaurant where they immediately recognized us and would (without asking) bring our favorite appetizers. It was our Italian version of Cheers (everyone knew our name). The same people that owned the restaurant also owned a pizzeria. I would stop in from time to time for take out. The owner rarely recognized me when I was by myself. In fact, it happened so often that he actually acknowledged the oversight. I suspect it happened because I wasn’t attractive to the point where I would stand out or unattractive enough to register in this man’s memory without my family to provide cues. I simply blended into the woodwork.

That never happened in my 20’s or 30’s. It’s a jagged pill to swallow especially if you relied on your looks in your youth. I was aware of the perks of being an attractive young woman but I never fully appreciated the power, I miss it.

Like a lot of women, I fell into a bit of a cliché. I was a upwardly mobile career girl who transitioned into a SAHM in my mid 30’s. When my kids were headed toward middle school the internal panic started.

1) What have I done?

You put your family first, not yourself. That bit about putting your oxygen mask on first in the event of an airplane emergency….you didn’t do that. Tsk, tsk, too late to dwell on it.

2) What will I do now?

Should I go back to school? I already have my BA…what industries are hiring? If I spend X amount on education how long will it take to recoup that and do I have time? Will I go back to school, incur debt and be unable to get a job? What contacts do I have from 2003?

This cycle of self-doubt and reflective reasoning is the stuff of insomnia and panic attacks. It’s painful and no one can walk you through it. People can make suggestions and offer guidance but it’s your brain on the hamster wheel at 3am.

3) Will anyone hire me now?

Maybe, maybe not. Another Facebook group of women were recently discussing ageism in job interviews. One women was considering dying her hair because she thought it would help her odds of getting hired. Others try cosmetic surgery, injectables and most shave decades of experience off their resumes to make the math more difficult for a potential employer. Ageism is real, combine that with a large gap of employment and it doesn’t paint a pretty picture. I volunteered for a local hospital for 10 years and could not even get an interview for a data entry job. Eventually I started my own business because it was that or retail.

Many of us wake up at some point and wonder all of the “what ifs” and decide some changes need to be made. I’ve noticed this in myself and others, there is a certain burst of energy and creativity that comes at midlife. Whether it’s writing, painting, sculpture or throwing yourself into a charitable cause or activism, ladies tend to get revved up in the middle. I don’t know if it springs from a new well or one that was previously blocked by fear and expectation. I suppose it doesn’t matter because I jumped in without knowing the answer. That has been the gift of this phase, the willingness to dive into previously uncharted waters.

 

 

Photo credit: Copyright: <a href=’https://www.123rf.com/profile_yuliialypai’>yuliialypai / 123RF Stock Photo</a>

What’s in Your Wheelhouse?

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What’s in Your Wheelhouse?

Seems like everyone has a wheelhouse these days, a metaphor to describe their specific skill set. I hear the term from friends that are still slugging it out in corporate America. I used to have a wheelhouse filled with current technical skills, boundless energy and a can-do attitude. That was fourteen and a half years ago before I was laid off from my Project Manager position at a software firm (The Office Space movie really resonated with me). Those attributes have been replaced with an intense hatred of middle school car line, juggling of my family’s emotional, social & physical needs, my imagination’s ability to go DEFCON 3 if I can’t reach my kids and an abundance of resting bitch face. I’m running out of ducks (psst…spellcheck is a stupid duck).

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Copyright: <a href=’https://www.123rf.com/profile_hermandesign2015′>hermandesign2015 / 123RF Stock Photo</a>

Here’s a not-so-secret-secret, I’m nearing the mid century mark (audible gasp, I know I can’t believe it either). So I suppose it’s natural to take a moment and reflect on some shit stuff. I did the math and in dog years I’m coming up on the big 3-5-0…no wonder I’m tired.

As I’m sitting here trying to flesh out this post, I’m listening to my husband teach our daughter Algebra. I’d rather eat a flaming sword while my fingernails are pulled off with rusty pliers. I stopped helping my kids with homework somewhere around 5th grade. If anyone asks my reasoning is to “facilitate independence”, I think they’re on to me though. The truth is I can’t do half of it without screaming or crying, if only on the inside.

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They say (not sure who “they” are) with aging comes wisdom. Hmm, not sure about that one. I knew everything when I was 17, you couldn’t tell me otherwise. Now I hesitate a little more, consider the thoughts of others who may have a different point of view and sometimes I’m wrong. I try not to “jump to conclusions” (still with me Office Space fans) and I reserve the right to change my mind. Perhaps I’m maturing just a hair, must be the flair (sorry, apparently I have a theme now).

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I’ll tell you want else comes with this milestone birthday – yes and no. Yes to spending time, money and effort on the people, places and things that matter most. No to the activities that don’t bring joy or a sense of purpose. I recently resigned from a position on a non-profit. I’ll still help out, I just don’t want my name on the letterhead. My time suddenly seems more precious and I give careful consideration to how I spend it.

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What’s in your wheelhouse?

 

A Peek at Dementia

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A Peek at Dementia

Her mind is a jumble of thoughts that misfire and get hung up midway. She’ll start a task and forget what she was doing somewhere in the process. The other day I came in and she had all the ingredients spread out on the counter, she just didn’t have any idea how to put them together. She wanted to make a sandwich for her husband of 67 years. She’s probably made a thousand over the course of their marriage, this day the how-to’s of assembly escaped her.

She’s highly sensitive, aware of changes in the moods of those around her. Her feelings are easily hurt and she isn’t shy about expressing herself. I visit with her several times a week including one evening when the goal is to get her fed and dressed for bed. Getting dressed is a long process. It’s a series of repetitive steps that have to be done in a certain order. She can usually stay on task but there have been exceptions.

One day last week she insisted that she had to take her pants off over her sneakers. I had to explain why that would not work, she remained stubborn about it. Then it clicked for me, she must have been afraid of something. Fear is usually the root cause of her resistance. Earlier that week, her husband commented that he couldn’t tie her shoes any more, he was physically not able to do it. This is why she wanted to take her pants off over her sneakers, she was afraid of being shoe-less. Once I explained that I would put her sneakers back on, she complied.

She has dementia, a moderate case. The thing about dementia is that it only gets worse, never better. Sure there are days when she is more lucid but her baseline status will only descend from here. Any major change such as the death of her husband or a move at this stage will hasten the spiral and she’s one of the lucky ones.

Her family is engaged and loving. She sees a relative at least five times a week and speaks with them a minimum of three times a day for medication reminders. Companions like me visit her each weekday. She has a small army of compassionate caregivers and she still lives with her husband. There are millions of people facing this condition without these benefits, what will happen to them?

https://www.dementiasociety.org/

It’s estimated that 9 million Americans are living with some form of dementia. They don’t all have the financial and familial resources to remain safe and comfortable. Families are stretched thin trying to triage caregiving while managing their own lives including; children, careers, personal illnesses and a home.

https://www.alz.org/facts/

This situation will overwhelm our healthcare system within the next decade and beyond. Dementia, including Alzheimer’s, effects one in nine people after age 65 and that rate increases with age. People 85 and older have somewhere between a 30 – 50% chance of acquiring some form of dementia. This condition is impacting more people as life expectancy increases.

What can you do to prepare for this? I suggest having direct conversations with aging loved ones while they are well. Discuss specifics of financial resources, care preferences and have an Advanced Medical Directive and a Will. All adults should have these preferences documented.

https://www.medicinenet.com/advance_medical_directives/article.htm#advance_medical_directive_facts

If someone has been diagnosed, you may want to tour some facilities that specialize or have a wing dedicated to memory care. If you have a male loved that will need these services, get them on a waiting list as soon as it is reasonable. Many facilities have beds that are assigned male or female. Since women tend to outlive men, they have historically had more beds available to them. It can take years for a male patient to get into his desired facility due to a lack of available beds.

Many people opt to care for loved ones at home due to financial, emotional or other reasons. It’s wonderful if you can find a caregiver within the family. At some point that person will need assistance as well. AARP has put together a thoughtful list of resources for caregivers.

https://www.aarp.org/caregiving/local/info-2017/important-resources-for-caregivers.html

To all the caregivers reading this, you are not alone. Please take a moment for yourself to find support. When you need help, ask for it from those that can assist. That may be an individual, an agency or a non-profit organization. When you don’t need help, prepare for when you do, your work is so important. Self-care is not indulgent, it is a necessity.

 

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Say “Uncle”

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Say “Uncle”

When I was a kid saying “uncle” to someone was the verbal equivalent of waving the white flag of surrender. My actual uncle took great pride in hearing the kids in his life scream or giggle cry that in the middle of a tickling frenzy. The tickling got way out of hand. It turned into a battle of wills between the victim and their own bladder. Many of us lost the internal conflict, there’s only so much tickling a kid can take before they spring a leak.

Similar games were played in my uncle’s pool. This added a whole other level of danger to the activities. There were multiple near drownings. Then there was that time when my cousin got chased by an angry swarm of hornet’s after he disrupted their nest. That wasn’t actually my uncle’s fault, it just happened in his yard. Joey had more than 30 reminders of that calamitous event. Eventually the swelling went down and the pain subsided. It was most unfortunate that some of the hornets found their way into his swim trunks. I bet he still can’t pass a nest without a flashback.

My Uncle was a loud, gregarious, larger than life personality. I remember childhood holidays spent at his house with a heady cocktail of emotions. Angst and wonderment were abundant in equal measure. We were amazed by the gourmet chef inspired meals and horrified by the table topics at dinner. It was a hazing ritual with elements of cannibalism and we all wanted to avoid the hot seat.

For the bulk of my childhood, Uncle Jack was married to Aunt Dolly. That marriage went off the rails some 30 years ago but the memories remain. Aunt Dolly was from the South and her mother Mimi made the trip North at least twice a year. I loved their accents and their sweet smiles. I had never heard of ambrosia until they came along. Who doesn’t love tiny marshmallows in a salad that doesn’t even pretend to be healthy.

Aunt Dolly told me I had a face like Venus, the Goddess of Love. She said that when I was in the height of my awkward ugly stage and no one was sure if it would all work out. She gifted me with a ray of hope that I would not always be an unattractive lanky tween with buck teeth and stringy hair. She saw my potential and it wasn’t just looks. She noticed when I did more weeding than the other kids and argued with my uncle to better compensate me. She paid attention to me when no one else did and I will always cherish her for that.

We spent a lot of holidays at my uncle’s house growing up. He had the big house with the pool and plenty of space. They had an Atari gaming system which was the sh*t in the early 80s (Breakout and Space Invaders, the best). I was usually by myself because the other kids divided into two groups of two. My brother with our cousin Joey and my cousin Jenny with Tammy, Dolly’s daughter from a prior marriage. They weren’t particularly mean, it was just clear that I wasn’t in the mix. By this point, I learned to read people and saw myself out before anyone else could make the suggestion. I split my time between Atari and my grandparents.

Meal times were the absolute worst. It was like a twisted family style version of Survivor minus the camera crew (or the exotic location). Most of the adults were inebriated by the time dinner was on the table. Dinner time always got pushed back to some ridiculous time like 9 or 10 O’clock, apparently drunk people are lousy at keeping track of time. My uncle was a fantastic cook so that offered some redemption.

While we ate, the topics would vary between politics and religion. If those topics got stale then someone at the table would be fodder for the discussion. This was awful. My uncle would spew merciless hateful nasty comments at whomever had the bulls eye. It was usually, Tammy. We were all too scared to speak out against him. This was his house, his food, his f*cked up show. I wish I could go back to 10 year old me at Christmas Dinner and say “what is your problem man, why do you need to pick on a 12 year old every damn holiday”. No one did that, that girl was verbally abused at 90% of holiday meals. I’m ashamed for all of us.

Like most people, my uncle wasn’t all bad. He was always thoughtful when it came to gifts for my brother and I. One year he gave us 10 speed bikes for Christmas. For our birthday, he gave us season passes to Great Adventure. Those gifts meant the world to us and gave us experiences and mobility that we would not have had without his generosity. I know he helped my mother financially from time to time, despite their thinly veiled animosity.

My mother hated my uncle. She would lash out from time to time but not enough to stop taking us there for holidays. They would often spar in alcohol/dysfunctional family fueled debates that were horrendous to witness. My mother stopped drinking in the 80’s and our trips there stopped a couple of years later. They disagreed on everything from politics, money and the best nursing home for Nana. They have remained on non-speaking terms since my grandmother died in the early 90s.

I haven’t talked to Uncle Jack in years. After his second marriage dissolved we lost touch and eventually he moved to Florida with his third wife. I have some contact with my cousins and his daughter contacted me this past weekend to tell me Uncle Jack was asking about our side of the family.

Turns out the third wife was on an information gathering mission. Honestly, I’m not sure if my uncle even inquired about us. When we spoke on the phone she cautioned me that my uncle is “forgetful”, that is code for dementia. My grandmother (his mother) had dementia and his wife wanted to know if my mother showed any signs. I haven’t noticed any at this point and I passed that along.

My uncle definitely has some dementia, it was evident to me in the few minutes that we spoke. His wife told me that they plan to move from Florida to Delaware in about 6 months. I cautioned her that a move would be disruptive to him. I work with people that have dementia and change is a real struggle for that population. He will likely decline from that move and he won’t bounce back, they never do. She has family near where they are moving so I understand the practical points.

In the handful of minutes I had with my uncle, I told him things that I thought would be meaningful for him. Like how I always think of him when I hear “Blue Christmas” by Elvis Presley. He wore that record out every December. I also told him how he made the best mashed potatoes that I ever had and that I was not able to duplicate them despite my best efforts. He chuckled out those memories and I think they resonated with him, if only for a moment. I see a white flag in his future and it’s sad, uncle.

 

 

*Photo credit attributed to: This is the Front cover for the Single Blue Christmas by the artist Elvis Presley. The cover art copyright is believed to belong to the label, RCA Victor, or the graphic artist(s). Front cover of picture sleeve of original single release of Elvis Presley’s “Blue Christmas” (RCA Victor 447-0720)

 

Dementia

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Dementia

Dementia is a beast. I have a client that I visit a couple of times a week, she has moderate dementia. I’ve been visiting her and her husband for almost a year and we’ve gotten very close. She’s a bit feisty and I like to tap into that side of her personality, she seems happy there.

Last week we were walking in the hallway (“airing out” as we call it) when I had a brilliant, awful idea. The residents put a lot of thought into the decor around their front doors. Wreaths, plaques, photos and other seasonal tchotchkes line the narrow shelves that flank the apartment doors. I suggested that we switch a few of the wreaths around and watch to see what the residents would do. She thought it was the best idea ever. Of course we didn’t do it, we only dream of being that rotten, but it made her laugh.

She turned 80 this past weekend. My friend celebrated with her extended family and she sounded happy when I called her. I was surprised she picked up the phone. She is very picky about which calls she takes and I didn’t think she would recognize my name on the Caller ID. I suspect her family urged her to answer.

That’s the awful part about dementia. You forget – people, places, names, events….where the bathroom is, what’s a brush, how to read. My friend still recognizes that my face is a friendly one and she enjoys our time together. She just can’t connect all the dots.

Today she asked me if I liked any boys. I told her I still liked my husband, she chuckled. She asked again a few minutes later and I simply said “not really.” I never press a person with dementia or try to explain complicated situations. I’ll distract them to try to calm them but I avoid correction. Any change gets her antsy. It could be a different pill container or a blue cup instead of a red one, change is hard.

Last week I was straightening up the apartment and I noticed a pat of butter in a dose cup. The kind of cup that cradles the lid of cough medicine. There sitting on the bathroom vanity was a pat of butter in a dose cup. That’s what dementia looks like. You try to make sense of it but it in the end rational thought does not prevail. You just find the logic where you can and hope to ease the stress and anxiety with some laughs along the way.

My friend wrote a note to me on Tuesday. She wrote in on a napkin, her way of making me promise I would be back soon. This is what she wrote:

 

“I will come

on Friday.

Hurry Up or Else!

Keep this.

Love, Helen”

 

 

Sex Bomb

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Sex Bomb

I had a visit with an elderly couple today. I see them twice a week. I make them lunch, do some laundry but my main job is to socialize with the wife. Helen tends to get a bit down sometimes and dementia is causing her to become forgetful. Her husband, Ralph, wasn’t feeling good today and I wanted to lighten the mood a bit.

One of the grandkids got them an Echo Dot for Christmas. I thought some music might make my friend smile a little so I had Alexa play some Paul Anka, Frank Sinatra, The Doobie Brothers (I was hopeful, she didn’t like them) and finally some Tom Jones.

The first Tom Jones song to come on was “It’s Not Unusual” and she loved it so we kept Mr. Jones on. The next song was one I never heard of – “Sex Bomb”. My ears did a double take and I instantly thought….Houston we have a problem. I looked over at my octogenarian friend and she was dancing. Here’s the chorus in case you aren’t familiar –

Sex bomb, sex bomb you’re my sex bomb –  You can give it to me when I need to come along (Give it to me) – Sex bomb sex bomb you’re my sex bomb – And baby you can turn me on (Baby you can turn me on)

Enjoy!