Learnings through grief

When I was given the news that Mom’s condition has worsened quickly and her organs are shutting down as marbling process has begun, I fell into a whole host of emotions.

It’s an unimaginable sadness for her condition. Shocked over how quickly she had degraded since I was out there in July.

Anger & frustration because I cannot do anything from 16 hours away.

Remorseful for being such an asshat in childhood.

Guilt ridden that your Aunt has had to support and comfort mom in these worst days without me there to give her relief

Fearful that because this is hereditary our children will have to experience this very same thing

Really sad that there’s no cure for LBD and this couldn’t have been reversed

Hopeful mom’s suffering is short.

You weren’t aware of the pain I was processing while my mother was in her last days, as I try to shield you from most of the unnecessary burdens to keep you on your own path. You should never shoulder the pain of mine.

I had those who reached out to offer solace and comfort as I processed. My good friend offered these words,

“…our challenges are but learning opportunities. Sometimes we cannot make it right with that person but we can make it right going forward taking what we have learned.”

I share that opinion. And I searched for the learning. From the hospice website, it instructs to try to be a calming presence while the loved one is dying. Sharing memories and playing their favorite music because they can still hear.

I sent as many songs as I could think of for your Aunt to play softly to our mother. I played them myself and a whole flood of memories came back. A lot of these songs reminded me of the times we grooved and bopped along while spring cleaning. Or the summers sunbathing and planting marigolds, bachelor buttons and zinnias in the back yard.

This lead to extended memories while your Aunt and I were young and we’d spend days watching shows together with mom. Teaching us yoga in the living room, laughing along with the Galloping Gourmet and the game shows, or watching soaps, Phil Donahue and Oprah.

My best memories were the little moments.

But the larger learnings were those times when I would fall short of strength or courage and in her toughness she’d inspect the situation and declare, “Oh, you’ll live.”

She encouraged independence and self reliance, through her own example of complete dependence. As a cautionary tale, we knew she wanted more for us than she allowed herself.

And although she and I had a rocky relationship as I grew older, I often wished our relationship was as close as the mother-daughter bonds a lot of my friends had with their own mothers.

My take-away from all of this is that we may not get the mother we hoped we had, but the one we were intended to have to make us who we are today.

For that I am grateful, I am independent and self reliant. I strive to be attentive and ever present for you.

I know both you and your father feel I do things with so much extra effort that you deem may be over the top and over-extend myself for others needlessly; but you see, I am taking what I have learned and striving to be better with the time I have been given.

On Fearing the End

My mother tearfully told my sister she knows she is dying and she feels that it’s too soon and she doesn’t want to leave us.

I agree, it is too soon. But unless someone comes up with a miracle cure for dementia with Lewey Bodies, it is what it is.

I feel as though she is being given a powerful lesson on the gift of life. It is not to be wasted. I can only feel extreme sorrow for her situation.

As I read the Qu’ran this year as part of my annual reading challenge; I’ve come to understand that this is as prescribed for her. It states that we will all come to know the hour of our death when it is time. And God will reveal our destiny based on our deeds.

I’m eager to give her some comfort in knowing that her destiny lies ahead after her death and all of this suffering, the blindness, her hallucinations, her inability to find balance while mobile, her loss of memory are part of this journey and will be nothing but a relief when the end arrives.

Logically, it is something on which to look forward. Shedding this suffering for peace. Joining those who’ve departed before her.

Personally, I’m now looking forward to being able to shed my attachment to this material existence just after reading what I have so far from this book which offers so much comfort and something more concrete than the holy texts before it.

The problem I have is that now that she’s in a nursing home I cannot find the pocket of time to convey what I feel might bring her comfort and hope. Being so far away makes it difficult because when I can call, no one picks up or she is asleep.

So I’ve chosen to send flowers with messages of comfort every month with the hope that these messages will be read to her and bring her some peace.

I wish that someone could visit with here in a therapeutic capacity to help her process her feelings. Ease her fears and help her cope. I trusted that my sister would arrange for that level of care but she also is in need of assistance to process what is happening and cope with the stresses of this situation.

I pray that my sister finds the strength to ask for help instead of believing she must go at this alone.

Losing Track of Your Whys

In my years on this big blue marble, I have found it most difficult to be a comfort to those grieving a tremendous loss.

I’ve experienced great sadness over the loss of dear friends, family members and I’ve been witness to those experiencing losses far greater than I can fathom.

In high school, a classmate was killed by a drunk driver and I couldn’t wrap my head around it. So I said what most say in their deepest sadness– “I’m sorry for your loss.”

It seemed a thin sentiment, because at the time, I couldn’t sense how profoundly losing someone you love can leave a chasm of emptiness and suffocating pain. And that grief would be ever present.

As the years went on and I journeyed through life, I had my share of grief personally. But before that, I experienced the helplessness of watching a friend process the loss of a beloved parent.

Nothing prepares a friend to be a support for that. Your heart breaks for them as they go through the five stages. It’s a dangerous time for some because they can lose their why.

No, that last statement wasn’t a word choice mistake. I really did mean why and not way. Although losing your why leads to losing your way in life.

You see, our why is our inner sense of purpose. What is our reason for being here? How is it we are here in this path we walk? That’s actually an opening to a song by the Moody Blues. (ref.: A Question of Balance) Though I digress… just check it out sometime. It’s a beautifully thoughtful song.

Sometimes the upending loss can make one question: “What’s the point of even being here? Why go on?”

They can begin a path of self destruction to deaden their pain or support their reasoning when they reach that depth of grief.

As a friend to someone who reaches that point, you can be their support best through carefully listening as they process this pain and help them find their path back towards their purpose by patiently employing a gentle Socratic method of questioning to lead them back to their whys.

Everyone has whys. They push them aside or forget about them in the noise that is the grief and sadness.

I learned most about this from the writings of Viktor Frankl– a holocaust survivor who was intent on studying those who survived the concentration camps and how they carried on. His findings further developed approaches to helping people contemplating suicide find their inner purpose. (ref.: Man’s Search For Meaning)

I can tell you I lost my whys a couple of times throughout my life. On 9/11 for example, I sat there for hours at my desk realizing nothing mattered. You were my why in that moment.

Later, I lost my whys when I realized I was grieving over love lost and paralyzed with fear after the heart attack and turned to self medication in the form of alcohol and danced ever so close to succumbing to the disease. You saw that and it really took a lot to bring me back. But I had to find my whys again. It was a little harder because you were older and my reasoning was stronger that you’re best off without me.

Through counseling and will, I was able to ask myself the questions to get me back to a personal sense of purpose.

Questions which really helped me comfort and guide when I was needed:

  • Who is left behind who still needs your care and love?
  • What impacts have you had on others so far?
  • What have you wanted to do that you haven’t already?
  • What do you think the person you’ve lost would advise you to do in this moment?
  • If it was reversed and they were here and you weren’t how would you hope that they cope?
  • What brings you happiness, joy and/or peace?
  • What are the ways to bring meaning of the lost one’s impact on you in your daily life?

Notice that none of these are yes/no sorts of questions. Always keep them open and encourage the sorting out of their feelings and thoughts.

Most importantly, be there for them and assure them of your love and support through it all.

Hard to Fight But Scared To Give Up

I have shitty veins. They break, I bruise and most times, it’s nothing. Occasionally it is something.

Something that should have killed me.

Those times I was in the hospital and stents were placed.

Recently, I’ve become more exhausted than usual and moderate to light activity causes chest, and limb pain. Sometimes a headache or neck pain.

The two smallest toes on my left foot are mostly numb. It’s a weird feeling.

I believe I may have Peripheral Artery Disease in addition to the Coronary Artery Disease tiara I wear currently.

I brought it on myself. I don’t exercise regularly, if at all. I have a sedentary job. I have a horrible past of eating like crap and weight has always been a problem for me. Smoking too.

I can talk the big talk by saying that no matter what, I won’t fight another episode; but, frankly speaking, I’m sad and afraid to allow my life to end. This is painful.

Yet the current state of my life, with the stressors of my job and family…I kinda do want a clean out.

I know! I just got done watching “It’s a Wonderful Life” for the second time this season and I cried as always knowing that life is a gift not to be thrown away.

It’s a pity I did whatever the hell I wanted while young with no second thought to the damage I was doing down the road.

I’ve read the articles on reversing heart disease and I do eat a mostly vegetarian diet. My daily fats don’t include butter (unless it’s nut butter) and I eat high fiber foods for breakfast and lunch and add it to our dinner with lean meats or a vegetarian option.

And yet here I am. My left leg numb and stinging after light activity, eating nitroglycerin like tic tacs.

I keep thinking if this is an aneurism or dissection or claudification, I just want to be home to die. I don’t want it to happen while driving or in a stinky hospital or god forbid — in the bathroom stall at work!

I’m finding it harder and harder to go to work in this kind of pain. I’m actually finding it very hard to justify working until I can either recover or just spend my days where I want to be. Home.

I’m also afraid to sleep while in this pain. What happens if I don’t wake?

The control freak in me worries about what mess I may be leaving you and your father to clean up. The paperwork, outstanding bills and accounts to close down. It’s all just a hairy pain in the ass.

I never wanted you to deal with my passing. That’s why I paid for my funeral in advance. That’s why there’s a book that has instructions for after I go. I just don’t have all the rest of the shit in it. Like accounts and passwords. Contacts.

I really must do that for you. I promise if I’m given tomorrow I will get that done.

And if I stroke out (and it’s not deadly) but leaves me where ultimately I am in a vegetative state, do not waste the money keeping me alive. Let me go.

Our healthcare system will ruin you and your father financially if you try to keep me going.

I hope that the afterlife is true and even reincarnation is possible. If I had that assurance I might not be so scared to let go. But this is where I am.

Stuck.

Heartsick.

Sad.

Tired.

Jealous of those who have shittier habits and will outlive me.

A teensy bit angry at myself for wasting the time I had.

Just know that I bragged that my veins were mostly Twinkie frosting when I was your age. How ironic it was for me to hear you brag that yours were filled with cheese this weekend at your grandpa’s house?

I’m here to warn you that even if you don’t smoke and you do stay active, your dietary choices will lead you right down the red carpet I genetically rolled out toward artery disease.

Please do the research now and make the necessary lifestyle choices that reverse the damage you’re doing and you outlive your mother.

It’s Only Human

The single most challenging thing in life is to know when to ask for help, remembering that one is never left to go it alone. Turning a blind eye to the helping hands around you when in a time of great need is a grave mistake.

There are some who get an intrinsic reward from sympathies of the masses by hoisting themselves up as martyrs in the face of great adversity and challenge. Whether it is out of pride they find no resources, or to get the attentions they crave, remains a mystery.

There is no shame in asking for help. Please never take the load yourself if you feel like you are drowning. Reach out when you are overloaded. Someone will offer to help or point you toward someone who can help.

It is no sign of failure or weakness if you ask for help. The important point is that you must recognize when you need help.

  • If it is sapping your energy/resources and there seems no solution in sight, no matter what you try; then you need help.
  • If you feel your back is desperately against the wall with no path to resolution, then you need help.
  • When you feel overwhelmed with all of the tasks/expectations set before you and you begin to shutdown physically or emotionally, then you need help.
  • When you’re experiencing a highly charged emotional state and it seems never-ending, then you need help.

Being in any of these situations it is easy for one to be blinded by the situation and not see who is around who can help – thinking you are alone to handle it.

The important thing is to know you are never alone.

Let me repeat that with emphasis…

YOU ARE NEVER ALONE.

There are hundreds of thousands of folks who probably have gone through the very situation(s) you are in and can offer guidance and solutions. Maybe family, friends, professional agencies, counselors, doctors, psychiatrists, support groups, message boards…even a complete stranger.

But you must open your mouth and say, “I need help.”

Simply complaining or staying silent will not alert those around you that you need help. Everyone around you is working through issues of their own and may not be intuitive enough to know you are in dire straits and need assistance.

Know too, that just because a person is busy does not mean they are not open to help. Please do not use that as an excuse to keep sch-tum. If they cannot help directly, they may know someone or some resource that can help.

I know it is humbling to admit vulnerability, but we are a community and we are put on this earth to help one another.

When that help is given, remember it. Do not claim that it was never received or disregard the help that is offered. You are less likely to be helped in the future.

Some of my favorite songs regarding helping

The Band –

Billy Swan –

Joe Cocker –

The Staples Singers –

The Little River Band –

The Youngbloods –

And most importantly – Bill Withers

 

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The Injustice of Aging

You’re young. So very young. This post will seem like a lot of whinging about what a drag it is getting old.  You’ve witnessed several elderly patrons at your place of work fall; and as the compassionate soul you are, you have helped and identified the problems to management to assure the incident is not likely to happen again.  It is that kind of consideration that gives me faith in humanity.

I don’t believe you were aware of all of the things I witnessed while visiting my mom. As well as the things I am ashamed to falling prey as a caregiver having little to no experience with dementia other than my teenage self re-living the same frustrations I did when my great-grandmother came to live with us while she suffered from Alzheimer’s.

Society is bent on valuing youth; because… “The children are our future”. (Also the right end to a pageant question as proven by iCarly.)

However, these bright eyed gifts are molded by their elders. And they deserve some respect and care as they make their journey into the sunset.  This is merely to forewarn you of what lies ahead as you age.

It’s not just the physical or mental deterioration which you must endure on this journey. And might I just say, some of it was a complete surprise.

For example:

As you age, your digestion changes once again. To the point where you are slower to digest and certain complex foodstuffs you are not able to break down as you could in your youth. (becoming lactose intolerant was a shocker to me)

Your ability to see at night deteriorates as well. I recall my grandmother on my father’s side having me take the wheel after sunset in Laredo ( a town with which I was wholly unfamiliar)  because she could no longer see to drive. She drove a huge boat of a vehicle too.

Your kidneys are not as efficient as they once were. So they slow in the processing of wastes and you swell a lot if you tax them. (Think cankles and puffy feet) It’s actually painful.

Skin issues become a thing. Fungal infections, boils, yeast, suspicious growths, moles, skin tags, wrinkles, wens. Jesus I thought the dermatology visits were over when acne was resolved.

And this doesn’t affect you since you’re a guy… but the many plagues of menopause are shocking. Burning mouth syndrome, hot and cold flashes, mood swings far worse than PMS mood swings, the hemorrhagic instability of the in utero sloughing process. The sudden transformation into a carnival sideshow freak crossed with Frieda Kahlo. My beard if left to grow would be better than yours. I would stake a bet on it.

Your mind is not as sharp to grasp and hold onto items in short term memory. As you age it progresses while mid sentence. You cannot finish a fucking sentence while talking! Imagine the shame and embarrassment of that.  Some of it is funny like the “Where’s my [thing I cannot find but is on me the whole time]?” or the “What did I come in this room for anyway?” scenarios. Others are scary like losing a chunk of time and space while driving a route you’ve driven over and over. Or scary like attempting to place [some object] into [place where it does not belong].  And yet other are scary like not remembering if you had shampooed or rinsed your hair while you are in the shower. Or super scary like standing in that shower and not knowing what to do at all. You are simply frozen in indecision.

Aside from the obvious aging issues of diseases tied with old age, lifestyle based illness, poor reactions to viruses you once could recover with ease in your youth there is more.

There is harassment, discrimination and abuse.

Refer to this handy chart: 2018-08-17_14-56-49

I got to see some of this first hand while staying with my mother.

For the Financial Abuse:

  • The phone calls trying to scam her of money or scam her medicare coverage for services she did not need.
  • Care workers stealing from her instead of doing the work they were hired to do.
  • Neighbors charging her exorbitant amounts for services they had no need to do.
  • Pharmacy delivery people taking blank checks or forcing my mother to sign checks she clearly could not sign for the deliveries. (who knows how much they were taking out of her account)

For the Psychological:

  • Careworkers guilting my mother into allowing for them to not doing their job because she was not as bad off as they were.
  • My own response to frustrations of the symptoms of her disease as if I felt she was purposefully being uncooperative when clearly I did not understand how her functioning degrades as she grows more tired during the day.
  • Neighbors verbally harassing my mother over things she cannot control.

For the neglect:

  • Careworkers not showing up, showing up late, sleeping on shift, not doing the tasks for which they were assigned.
  • My mother not getting the right meds at the right time of day due to the mismanagement of her prescriptions in the pillbox
  • The horrible food choices delivered to her door once per day only 4 days a week. Never in a timely manner.
  • Not discarding spoiled or discarded food which might lead her to consume such by accident.

Luckily for my mother, I never once saw her physically abused. But that is not to say it didn’t happen in the nursing home. I have no proof of it.

There aren’t many protections or safeguards from elder abuse other than vigilant family members and case workers. As you grow older it becomes increasingly important to have a network of younger family and professionals who have your back. Don’t think you can go this alone.

And if you are obliged to become a caregiver to either me or your father, know these things:

  • It is exhausting.
  • It requires selfless giving, unlimited patience, compassion and non-judgement.
  • You become the parent of your parents.
  • There is support for caregivers when it gets to be too much.
  • It is a-okay to say you cannot do it and arrange for in home care or nursing home care.
  • If you choose to get outside help, you must never trust they have your parents’ best interests in their purview. Assume they are all out to take advantage of you or their situation to their benefit. Stay vigilant and always check up on their service.

On Strength and Weakness

I stumbled across a click bait slideshow of the 20 bitchiest quotes from Bette Davis a few days back and had to smile over the featured quote in this post. (source: flavorwire.com/512679/20-of-the-bitchiestbettedavisquotes)

I could think of several people who fit her description with whom I came into contact in my life. As such, her quote seems to me  brutally honest and I had wished someone would have shared this pearl of wisdom with me so I could have been more prepared to identify it before my energies were wasted in those relationships.

I find that what impressed me most is learning that Ms. Davis, in real life outside of acting, was just as brassy and open as many of the characters she portrayed. I always admired her craft. She chose such complex and outstanding roles of women, often intimidating, steely, cold and, yes, bitchy. But strong. Even when she had the challenge with the tragic Charlotte Vale, in “Now Voyager” she knocked the viewers’ socks off with her stunning performance, letting vulnerability and weakness take the forefront. That film was a game changer for me in my fandom of her work.

The thing is, I was surrounded by very strong and considerably bitchy women in my life. Never once did I see them exhibit any weakness which I thought was daunting. The expectation was that to be a survivor, a success, one never showed weakness. No matter how heavy the burden, you shoulder it. No pity parties, no crying. You do what needs to be done.

I survived because I was tougher than anybody else”– Bette Davis

I thought it was the norm that when the going got tough, you pull up your big girl/boy pants, take a breath and keep going. Mostly this is true because it is so easy to get lost in the drama of the situation and feel sorry for yourself and simply give up. Lately this week has given me pause in terms of not letting some of that weakness show. I cracked a little and finally let out the stress, the anxiety and the fear. I cried on the way to the grocery store. When I pulled in to park, I realized my eyes were more than likely swollen, puffy and my face very flushed. So for that moment of release, I sat there spending the time to pack it all back in, taking that deep breath and carry on.

I learned right there on the slow walk into the store, that moments of weakness are needed. I had to let it out as keeping it in was tearing me down, mentally and physically. Sometimes one can find more strength from showing or recognizing weakness and tending to it for just that moment. Asking for a break, a little help, or just disconnecting to let it out some.

One cannot be strong all the time and it is okay to take that moment to let the stress of the burden out; briefly, but out.  Denying the toll life’s challenges take on one’s self will manifest in different, more self-destructive ways. Recognize it and tend to it.