Still swinging in the wind
Five years ago I started this blog by posting a photo of myself on the bridge spanning Grandfather Mountain near Blowing Rock, NC. Taken a year earlier the photo has always symbolized my trepidation about retiring. Today, it symbolizes my apprehension about the future. I remind myself daily that today is all I really have, all any of us have. The past is in the past. The future has yet to unfold itself. Enjoy today.
Out of deference to Martin I have not written about this part of our journey, but the time has come where his condition is advanced. I don’t think there is anyone in our circle who isn’t aware of it. It is also time for me to start writing about it. My experience might help others. It is the reason I have not finished my retirement book. It’s hard to produce an Ernie J. Zelinski type How To Retire Happy, Wild and Free when you have a huge unanticipated cloud hanging over your retirement.
As an unexpected caregiver, I have created a good support network, including a therapist I see once or twice a month. During one session I sat with her silent in my thoughts. She said, “I’ll bet you never saw this coming.”
“Not in a million years.”
She continued. “I’ll bet there are some days you could just go outside and scream.”
I nodded. Not just some days — every day. And once in a while I go to the top of the hill on my six acres and do just that. As a caregiver much of my time goes to doing everything and anything requiring reading, writing or verbal skills. There are my doctor’s appointments and Martin’s, my emails and his, snail mail, financials, repairs around the house, the art studio we decided to build, shopping, pumping gas, reading recipes so he can cook, programming the thermostat and anything else requiring the understanding of words. Some days the pressure is enormous.
Like a coyote stealthily slipping through the night woods in search of prey, it started in 2010 with personality changes in Martin. They were attributed to stress and depression. Averse to taking medications, he refused antidepressants. It took years of intermittent doctor’s visits, struggle with Martin’s denial of the facts, cognitive tests, blood work, CT scans, MRI’s, and finally one very good neurologist to reach a diagnosis of Primary Progressive Aphasia (PPA). That was two years after an initial diagnosis of Aphasia, which is usually caused by a stroke or brain injury, and of which there are several versions of the disease.
Aphasia Poster
What is Aphasia? It is not Alzheimer’s. It is a loss of language skills — reading, writing, verbal abilities and comprehension of the spoken word. According to the Aphasia Association most people with PPA retain the ability to take care of themselves and pursue hobbies. However, they confront a 60% chance of the brain deteriorating into Alzheimer’s. That said, Alzheimer’s drugs do not help with Aphasia. Because so few people have this condition — it’s estimated only 200,000 have the PPA version — there are no drugs and most physicians know little about it. Martin’s neurologist only sees one or two cases a year. Obviously, this is one of the reasons a solid diagnosis took so long.
Nothing makes a person stop and realize what is important and what isn’t like a diagnosis of a serious disease. Our priorities definitely changed. Everything came into focus.
Oh, I threw my pity party, a long one in fact, of about a year. My negativity almost swallowed me up. It took time to realize this is not about old age. I had polio at age 3, lost my oldest brother in a car accident when I was 7, followed by the loss of cousins from brain tumor, leukemia and other tragedies similar to my brother’s death. Adversity can happen at any age. One day I asked, “Why us?” A voice inside answered, “Why not us?”
Bicycling is good for the brain
Martin still bicycles a hundred miles a week. He creates all kinds of art. He cooks, cleans and works on the property. I have to leave the washer and dryer on the same cycle. If I move the dial, he doesn’t recognize it has been moved. I have to watch for things like his microwaving fresh carrots in the plastic bag they came in from the store. When he sets the table, I may find a spoon and knife instead of a fork and knife. It could be worse. It may get worse. But we have today and today is good.
Along with prioritizing comes a focus on what works best for both of us. As a caregiver I often put Martin’s needs first. When his neurologist asked him what stressed him most, he answered without hesitation, “Other people.” As an extravert, not having people to the house as often has been difficult. I do most of my socializing outside our home.
Martin’s bird among coneflowers
While it’s important for Martin to remain engaged, his neurologist recommends limiting any situations that may cause him anxiety. Speaking of other people, some understand that; some do not. Since all looks normal with Martin’s appearance, there are those who do not understand the unseen changes in his brain have rendered him a different person than he used to be. Their presence alone can cause stress as he struggles to converse with them and comprehend what they are saying. We learned to distance ourselves from those who are not understanding about our new normal.
As my time is taken up more and more with caregiving, I have grappled with discontinuing this blog. I’ve decided to post once a month instead of foregoing it altogether. It’s important to me and I feel like it is to my readers. I have started rewriting my retirement book to speak truth about my journey. No, retirement is not always rosy. But, neither is life at any juncture. This is just one more change, one more challenge, one more adjustment. Even in the face of adversity, even with an event I would never see coming in a million years, there is still much to be celebrated. Enjoy your day, no matter what it brings!
Kathy's Retirement Blog 
Kathy, I am so sorry to hear about Martin, but glad that he is still active with his bicycling. I have my own pity party at times, too. My husband has lost his vision due to macular degeneration and it is amazing how we took little things for granted…turning on the microwave, the dishwasher, the washing machine, using the phone. Prayers are with you. As a former speech therapist, I have treated patients with Aphasia, but none with the type Martin is experiencing. The Veterans Administration has been very helpful in supplying help and even has a camp for blind/low vision veterans to learn how to navigate all types of daily skills. Keep writing!!
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Dear Kathy,
I have truly enjoyed your blog for the past few years. I will be sad not to see you post, but I would understand.
Hopefully, you will find the time to keep us posted on your new journey. I have a sister, age 55, who has recently been diagnosed with Aphasia. To further complicate her life, she is developmentally delayed and is epileptic.
Warm thoughts to you and your husband
Karen Parker
On Tue, Nov 28, 2017 at 11:43 AM Kathy’s Retirement Blog wrote:
> Kathy Merlino posted: ” Five years ago I started this blog by posting a > photo of myself on the bridge spanning Grandfather Mountain near Blowing > Rock, NC. Taken a year earlier the photo has always symbolized my > trepidation about retiring. Today, it symbolizes my apprehension” >
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Kathy I hope you keep posting. I am on a similar path with my husband. He has AD and is probably a stage 4. Some days are good and some are not. I have learned that he is happiest when it is the two of us at home together. He likes to stop and talk to people when he is out on his walks because the conversations are short. When friends are over his ability to carry on his share of the conversation is noticeably declining. I have had my own pity parties over the past few years. The hardest thing for me is to see other couples engaged in conversations where they are equals. I miss the fast back and forth comments we used to be able to make and the humor we shared. I grieve for the travel we will never do but I realize that we are very lucky to have done all that we did do. I plan to retire next month and that will be another big adjustment so I will go back and re-read your earlier blogs to see how you handled it. Good luck and I wish you strength and peace in the year ahead.
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Kathy, I am sorry to hear about the health issues that your husband is facing, and the implications for you in the caregiver role. Loss of language is is a huge challenge, as language is the primary means of bonding in our social and personal relationships. Your point about enjoying today is such an important point for everyone, and especially in situations of deteriorating health. I wish you the best as you navigate the road ahead.
Jude
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A BIG thank you (!!!) to all for the kind comments. I am so sorry to hear that some of you are experiencing similar challenges. It is difficult requiring large amounts of compassion and patience…that is love and commitment. Remember to extend your compassion to yourselves. As I sit here watching birds flit around the feeder Martin keeps full, I know I am taking pleasure in the small things in life in a way I never did before starting down this road. No matter where you are in your life journey, stay mindful of your surroundings. Gratitude for today. Best wishes to all of you. K
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Just catching up on this post. My heart is sinking for you. While nobody can feel what you’re feeling, we can all attempt to imagine the loss you must be feeling. Screaming on the top of the mountain may be good therapy for you during this season. I think I’d make a few visits there each day if I were in your shoes. Please do your best to take care of yourself. I hope you can continue to find the strength to share one update a month with us.
Not long ago, I was primary caregiver of a family member with dementia and cancer. Some days were nearly unbearable. I just wanted to scream. The other caregivers and I scripted an ongoing story with each other called, “Adventures with G.” It helped put a lighter spin on a dark subject matter and helped us all get through it. He’s in heaven now.
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Chuck, I’m so sorry for your loss and the experience, but I thank you for your candid understanding of what it feels like to be a caregiver. This is the hardest thing I have ever done and appreciate anyone who has an inkling of what it takes. K
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Thanks for sharing. You are right it isnt about retirement but about life. Keep writing about the truth. Caregiving is interesting because it does change a person it just makes us important people doing important work. It is an important job. The reward is the close contact you have with another person it is like the reward we get with our kids.
Be happy you are not alone.
Carol
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Kathy, I just discovered your blog, as I prepare for my big transition six months from now. I was actually thinking of developing a blog for the same reasons that you did five years ago. I may do that, as you have provided so much incredible information and insights on this site that another blog may not be needed! I am sorry that you need to step back from it a bit. But you’re doing what you need to do at this time. That seems to be the experience of life – that the unexpected happens, and we have no choice but to live with it as best we can, and be grateful for the life we have. Hope that you will draw on the strengths and support of your followers and know that many people are there for you.
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My heart goes out to you. It sound like you have found ways to do this, but it is so important to take care of yourself. Nurses are known for not doing that, but we do need to do that. If you ever need a listening ear, please contact me. I am a good listener.
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Sandra, Thank you so much for the offer of a listening ear! It is so important for caregivers to unload. Hugs, K
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I had not heard of the stages of retirement. It is very interesting and true. In one of my posts I likened it to a loss and used Kubler Ross’s stages of Death and Dying.
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