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Imagine, in an instant, your spouse of years doesn’t know you anymore. All the moments you shared together—gone, it does happen. My Love, after slipping and falling woke up with profound retrograde amnesia. In that simple accident, she lost all 30 years of his memory, including world history, his family, and me. Our marriage, our family, our life, deleted. She is suddenly a stranger, a woman who looked at me blankly from his hospital bed, no flicker of recognition.
With that, I became a caretaker on her condition, I barely had time to think about whether this was forever. When we left the hospital, the doctors thought her memory would return within a few weeks, at most. So in those early days, I just tried to get through each day.
While She spent most of the day nursing an intense headache, I spent time putting out fires that were erupting in the love triangle without the leader at the helm. When she had breaks in the pain, we would watch TV. Just one commercial would bring up a never-ending list of questions for her. She asks things like: Why are people dressed in coats and it looks cold, when we are in light clothing and there is no snow? Why do people sound and dress different than we do? How big is Nairobi? How big is Kenya? The world? Many times these questions lead us to family pictures that give some background into the world we live in and the things we had experienced together. I do find myself explain that there are different climates.
Speaking of Christmas, well, that took hours of explaining about tradition and religion. Again pictures provided some insight, but I was never too sure what he comprehended. I soon realized that she could only absorb so much at a time, and sometimes it would upset her to tears to realize how much she did not know. I stopped saying “do you remember when?” It was just too hard to see in his eyes the pain of not knowing things she could intellectually know that she once knew.
The family and I gave up rather quickly on trying to jog her memory; she would become so overwhelmed with sadness if the “trigger” didn’t work. So they just tried to tell her stories to fill in the gaps. It was like a puzzle, and each piece held knowledge, historic facts, or personal memory; sometimes when doing a giant puzzle, you have to take breaks putting it together see the important areas you need to solve next. After about a month without a single memory returning, I also stopped asking each morning, “Anything come back?” her saddened face and downturned head while shaking “no” was too heart-wrenching to watch. I didn’t want her to think that she let me down by not remembering. His pain was palpable.
About a month and a half after the accident, my friends urged me to join them for dinner, and they tried to cheer me up, cajoling me. “If she doesn’t remember anything, you could really reinvent who you are,” one said. I thought about all of the bad times I could erase from my past, the chubby times and the bad perms. As the wine flowed, my friends had even more creative suggestions: “You have an amazing opportunity here. After years of marriage you can reprogram HER,” one said. “Tell her you go to the spa every Friday and you never clean the house and she always cooks.” And then, one of my friends said something decidedly unfunny: “Oh my God, what if she doesn’t fall in love with you again?”
I heard nothing else for the rest of the evening. This terrifying notion had crossed my mind before, but hearing someone else say it was paralyzing. When I got to my car that night, I sat, overwhelmed with emotion, and cried. What if she doesn’t want me anymore? What if she wants to live alone and experience the world without me? This is the kind of thing that happens in movies, not in my life.
I thought about the first time we met at a barbecue at his friend’s house in the suburbs of Nairobi. Unbeknownst to me at the time, it was actually on Her 22nd birthday. I was set up on a blind date and so was she, but not with each other. She and I met again on campus. Towering below me at 5 foot 4, she was an attractive pillar of strength, yet she won my heart with her gentle womanly nature and kindness, which she allowed only me to see. To the world she was this quiet, tough, driven alpha female; to me, she was everything I dreamed of in a woman.
As I got to know her better, he revealed all nonnegotiable values I looked for in a mate: honesty, wisdom, security, love, humor, courage, and respect in his words and actions. We spent hours as young lovers talking about our shared morals and values, and how we wanted to live like our parents had raised us—family first. Together, we enjoyed the simple life of the college campus, and sharing cold leftover pizza for breakfast. I remember struggling to get though strenuous workouts, and then she would come by the gym after her practice. I knew that coy smile she gave me meant she wanted to walk me back home to study together, and my tired body would fill with anticipatory excitement.
Thinking about the longevity of our love, it was hard to believe that I would need to win back his love.As the weeks wore on, I spent every day by his side, while working from home. She often expressed his frustration with her loss of emotional connection to the past. He wanted to know what she was feeling in those moments of her life that we captured in photos or on video. She was also trying to understand her role in our family. I did notice that she watched me while I moved around the house, relentlessly questioning doctors and making sure she was as comfortable as could be. She was affectionate toward me. But I wondered: Would I forever be just a friendly face to her, or could we once again be something more?
The thought of it tortured me. I spent hours on the phone with my sister in law and best friend, venting and discussing solutions to various problems that were arising. Her sister played a vital role in keeping me strong. We hugged each other, often sobbing, while sharing our sadness, frustration, and grief. My unspoken inner sorrows were then given to God, praying for answers, healing, and peace.
It occurred to me that I could tweak my personality to be flawless—but that would take more energy than I had, and I figured she had loved me once before for whom I am. Maybe it could happen again.
As the weeks at home turned into months, she and I continued each day to spend time together, eating meals and watching movies and TV shows she once liked. I told her of how silly movie lines played a role in our family, quoting Dr. Evil. We had some laughs trying “new” foods that she could not remember, like Twinkies and candy bars. We laughed and cried together as she tried to remember who she was. Nothing was returning. We seemed to be only discovering more that she had forgotten.
Over the months, she never regained her memory. As she needed to know her world more, I thought it was vital for our relationship for me to share who I am, my emotions about things that had occurred in our past, and my thoughts about how we could get through this difficult time together. I shared details of our previous loving relationship; I showed her piles of family photos that I had saved, sorted, and stored. I wanted to fill in the lost memories and at the same time to exhibit the depth and substance of our loving life together, as well as the amazing selfless lover.
While I was creating some reality to our years together, I think I was etching in her the depth of my love for him, and she was realizing what “love” was. I don’t believe that I was reprogramming her love for me back into his heart. I believe, now reflecting on why she fell in love with me, that the fact that I kept loving and supporting her as I had always done, along with pure instinct. Her heart began to remember what her brain had lost.
In July of 2014, she got a single-photon-emission computerized tomography scan, or a SPECT scan, which revealed a profound lack of blood flow to the right temple and frontal lobes of the brain where it is believed that long-term memory is stored. Doctors told us that there is little hope that his memory will return. This was a huge turning point for us to accept that she needed to live for the future, as she might never recapture the past.
We continue to search for answers. There are still some rough days when we struggle with self-identity issues and the profound loss of memories. She tells me every day that she loves me more and more, and is so happy that I stood by her. While she has changed in many ways, as we all do over the years, I am grateful that the woman I fell in love with years ago is still by my side. To have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part for with time I have come to realize that the help is abundant from friends and this is how we manage to get via our different struggles
1. Taking on More Responsibilities
As the partner with dementia becomes unable to carry out his or her usual tasks, the unaffected partner begins taking on extra responsibilities.
How You Can Help:
Encourage the unaffected partner to receive ongoing support where he or she is most comfortable, whether that means leaning on family members, turning to a church community or bringing in professional help. In order for a couple to maintain a relationship when dealing with the effects of dementia, some find it helpful to bring professionals into their homes, or to move into a supportive living facility, rather than have the unaffected partner become the sole nurse, housekeeper and personal caregiver.
- Decline in Health for the Caregiver
The stress and demands of daily care negatively impact the health of the caregiving partner.
How You Can Help:
Remind the caregiver you’re concerned about not putting his or her own needs first, and offer to step in to provide respite care when you can. Caring for someone with dementia can be all-consuming, and many caregivers see their health, both mental and physical, suffer as a result. Offer to stop by and spend time with the affected person once or twice a week so that the other partner can take a break and attend to his or her own needs. During this time, the caregiver could run errands or go to appointments, attend a support group or do something enjoyable like see a movie.
- Personality Changes
When one partner experiences personality changes, loses confidence in their abilities, or acts unpredictably as a result of dementia, both partners often start to withdraw from others.
How You Can Help:
Stay engaged — emotionally, physically, socially — and keep the couple involved as a part of your social group. Invite them to spend time with you and to mix with others just as you have in the past. Maintaining your relationship may require extra effort, but a commitment to connecting in any way you can will help provide a sense of stability in an uncertain time. Lend a listening ear and share resources for support when it makes sense. Most of all, when you interact, remember to help the couple stay positive.
“I remember the best times we had together,” she says.
For a couple affected by dementia, small actions from family and friends can have a big impact. Simple acts of kindness like providing respite for the caregiver and helping the couple look on the bright side can make all the difference
As time unfolds we are to glad that family and friends stay by our side with positive notion that things will be great one of the soon coming days.Living in the current and no one pestering her of the past …… Be sure of the covenant and vows you take up at the alter for better or worse do stand by your love…