HOW TO DEAL WITH THE AFTER EFFECTS OF A STROKE?
“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the IMPOSSIBLE!”~ St. Francis Assisi
Honesty and love explains how Gervel tells her story about being a wife, a caregiver to her husband after a long almost 4 year journey. It has it’s obstacles, it’s grief, and it’s decision-making that I would not wish on anyone, Gervel says. I’m human. Period. I’m not a SHERO nor am I a martyr. I struggle daily. April will mark 4 years into this nightmare. It’s not the physical demands, although they are cumbersome, ie. feeding, cleaning, changing adult diapers, moving a grown man whose body has disappeared before my eyes, it is the emotional part that is the worst. It is like being in solitary confinement, this person that was once was so vibrant, the love of your life cannot respond to the simplest request. I am Reggie’s caregiver 24/7 for the most part, I have a kind woman that I pay when I’m doing my jobs and to have a breather away for a few hours… lately I find myself spending money I don’t even have – having her here more often because I can’t stand to do it for more than 48 hours consecutively there is not enough wine to make it palatable. I rather sacrifice some other need to have a break even if I’m in the house, and with the pandemic where else am I? The truth of the matter I’m watching someone I love actively die… and it is brutal. Explained by Gervel.
What makes a person stay? Regardless ?It has been gently suggested that perhaps it would be easier if I looked at a nice facility for Reggie, that it is taking a toll on my well-being having him at home. I have also been told that a lot of people would have left by now, not because they don’t love their person, just because it is overwhelming and there is no end in sight, no recovery, his prognosis dire.Let me try to break it down… the why I stay, regardless. It is because Reggie is my soulmate and if you are fortunate to have a soulmate you know that connection is an organic destiny. When you are loved authentically you have a powerful bond with a person that is rare and treasured. Our lives were entwined together for 30 plus years. My strength comes from within my soul, enabling me to do things I never thought I could do. This is a deeper connection than just loving somebody, love sometimes fades over time, you may say “I love you but I gotta go now, I can’t do this anymore.”. If you are fortunate to have a soulmate, you know that person is part of your wholeness. Yes it’s difficult, yes I’m tired, yes there are days I want to give up… but I will remain here, because of this force within me that can’t be interrupted. Gervel says.
I don’t know if it is the impending holiday or the pandemic or what… but I’m feeling incredibly vulnerable, just a mess. Weeping if the wind blows my way or if I hear a holiday melody. There are days I don’t even recognize the person I’ve become, some days there is a dark cloud looming over me even when the sun is shining bright. The fear is maddening, most of the time I’m so freaking busy, I don’t usually let it consume me or notice it until I have a quiet moment, like this morning waking up at 4 to the quiet that comes with dawn.I look for signs in the universe that tell me things are going to be better- and then I think, wait a minute you are okay now, just roll with it. I still have much good in my life- little things like ordering beautiful a perfume, that I should not have been spending money on, and the company sent me 2! Or because of my stress level I’ve loss weight and I can wear my “ small” clothes now, things that I probably should have gotten rid of but didn’t. I’m still shooting, pandemic and all… that’s a blessing. I’m often asked how can we help… my priority is keeping Reggie home no matter what, it was in his advanced directive that if at all possible he wanted to be home… and as difficult as it is that is what I’m going to do even if it kills me. 90% of my jobs are at home in my studio, but with this pandemic and having a business that is not essential it’s been a challenge getting bookings, so what would be helpful is if you book a session or referrals or purchase a gift certificate for a future session. I LOVE working! Yes, so don’t forget to book your next photo session with Gervel!
A catastrophic event, in my case Reggie’s stroke, has a way of disintegrating a family. It has taken its toll on all of us, there are days I wonder who have we all become…The finger pointing of who is not doing what, the frustration of being a prisoner, my comings and goings regulated by my ability to write a check for a caregiver, the hope of recovery has now settled to the grim reality of hopelessness. We are all suffering from the stroke. The outbursts are now routine, the quietness that comes from not having nothing to say to one another is our norm now. I no longer have any tolerance for bullshit, gone are the welcome smiles with the double dose of niceties that I normally dish out when family comes by with their grandiose recommendations of what I should be doing. I hate to rant, but this weekend was difficult, Reggie is tired, and no one other than my son and I want to accept that this is the case. Everyone is looking for a solution, a heroic measure, instead of thinking what does Reggie want? The question I am often asked, “Is he depressed?” My response …”hmmmmm You can’t get out of bed, your left side is paralyzed, your wife has to take care of all your bodily functions, you have to be disimpacted, you can’t eat on your own, you can’t have a conversation about the pandemic or anything else for that matter, you weigh maybe a 100 pounds, your quality of life sucks anyway you look at it, and your question again???” I truly get it, everyone means well, they want to be fixers… but there is no fix. This is a heart-wrenching situation that has drained all of us, I cry dry tears now because I have nothing left. Gervel says.
One of the most difficult things with my ordeal is the dissonance of wanting Reggie to live while at the same time knowing due to his poor quality of life, perhaps as painful as it is to accept, the alternative would be better. You question your love when you are faced with with hard decisions. Do you love enough to put your own selfish reasons for wanting someone to be “alive” and breathing, at what cost? Do you become desensitized to your loved ones suffering? Do you put your hands over your ears to muffle the sounds of discomfort from life sustaining/prolonging procedures? Do you seek some other distractions, bury yourself in work, in order to separate from the reality of your situation ? Or do you connect with your feelings, and think about what would be best and become proactive?I wish I knew the answers…I’m haunted by this… Gervel says
A year ago, almost to the date I decided to choose happiness for myself regardless of my circumstances. I was slowly dying, no one really knew because I served a good game face, always smiling, while the truth of the matter, I was deteriorating on the inside, making a few to many trips to Trader Joe’s for more and more wine, marinating in a dark space only coming out to do my jobs. Once I claimed happiness again the universe opened up, the first thing that happened I was invited to go to Cuba, and I accepted not knowing or caring at that moment how I was going to go away for 8 days. Of course it was almost impossible to find care for Reggie so I could go away, but I did- and for one week I was able to be anonymous, no one knew my story, I was free from the burden of my daily existence. I was able to think and process how going forward I was going to balance everything and not lose myself in the process. I realized I had lost my voice back in 2017 when the stroke happened, I became this fearful woman whose protector was down and out and she was helpless, frantic, overwhelmed with life decisions that were coming daily. I felt powerless. My world as I knew it was changing rapidly, at a dizzying pace. Now 3 plus years later, I’m living aloud making decisions for Reggie and I and doing what is best for us, no longer making choices based on pleasing others. I’m in a good place, I’ve been grieving for my husband for almost 4 years, yes it’s odd to grieve for someone that is present yet so far gone. I greet each day with no expectations, welcoming and making the most of what I’m presented with- I’m stronger now and there is a peace that comes with that. As Gervel explains.
Being a woman of a certain age (sexty/one) I was having a conversation with a person and the topic came up about selecting a mate based on their well being and overall health. Would it be advantageous to perhaps chose a younger partner? Or would it be better if you are “mature” to stay solo so if something happened you would not have to take care of a person. I thought about it for a second and I thought about Love and its inherit risks, it is not easy to control your heart or who your fall in love with. Love is worth every bit of the unknown. If you have had deep love there is nothing you would trade it for… it is worth all the risks. However, what I will say if I’m going to be totally honest, when your relationship transitions to caretaker/patient and your partner is unable to communicate, and the days turn into years, it is an incredibly lonely place, filled with different emotions, such as anger, resentment, sadness and feelings of abandonment. Your storybook life has been bombed, destroyed forever, reduced to just a memory. I have had a beautiful life, my highlight reel dreamlike and I am grateful for that. I’ve had 30 years of bliss and 3 plus years of heartache. I don’t know what the future holds for me, 2021 is around the corner, I will continue on my path of reclaiming and discovering my purpose, while navigating my chaotic day to day experiences. As Gervel says.
I’ve mentioned this before, but I’m going to bring it up again. Do you have an advanced health directive? If so are you CLEAR on what you want in the event you are unable to communicate? And lastly and MOST importantly do you have someone who will execute your wishes REGARDLESS of the outside pressures they may face? Let me just say this… I was not that person and I suffer greatly from the guilt each day I look at Reggie in his condition … some days when his gaze is able to focus on me I think he is thinking “You bitch you did not do right by me and honor my requests that were laid out in black and white… I’m f-ing miserable because of YOU!” You are probably thinking what did I not honor? Well he did not want a feeding tube… I agreed and got one anyway-He did not want a trach – I got one anyway-He did not want IV antibiotics – he got those all the time-The list goes on and on … and my poor husband had all these things listed that he did not want- but I was not strong enough to refuse these heroic measures that in the long run could never bring him back…Take care of this and appoint someone that will make it happen… and it may not be the person you think it should be… As Gervel explains.
Our Podcast is an exceptional interview of how all of the rest of the family can suffer, can grieve, can be frustrated and how Love empowers all. Very moving and very passionate story of a soul journey.
Don’t wait to put your STUFF together, don’t let your journey kick you in the butt!
WHAT WILL YOUR STORY BE?
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