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 
good luck with the coming changes. We don’t know each other,but I enjoy your posts. I will keep you in my prayers
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Kathy, it was brave of you to share this story of what you and your husband are experiencing, and are challenged with. I hope that your blog continues to help you as well as inform and help others. Thank you for your decision to continue.
I was just now listening to a Podcast about diet and there was a mention of a Dr. Sherzai who specializes in brain-related disease with a connection to diet and long term brain health.
Here is the link: http://teamsherzai.com
This is not a recommendation, just information that may be of interest to you. Thanks for your blog. Thanks for sharing.
Deanna
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Hi Kathy,
I began reading your blog after I quasi-retired without really being ready to leave work and with absolutely no plan. This year has been a difficult transition and I always enjoy reading your blog. It’s a really thoughtful and positive take on retirement…particularly for someone who is skeptical about the idea:)
I’m so sorry to learn of your husband’s illness. But I’m glad you will continue to write the blog. I’m sure I’m one of many who get great benefit from it.
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Kathy, I am sad to hear your news. We all hope retirement will be great, but we are aware that something might lurk around the corner. I am glad you are continuing with your blog, albeit a bit more slowly. Take care
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Kathy, my heart and thoughts and prayers go out to you both. You are so right that we only have today to make the most of. Thank you for being so honest and sharing. What you do makes a difference, for however you want to and how frequently you can and want to. Do what’s right for you and Martin and know that there is a lot of love and caring out here for you.
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This heart-wrenching post certainly does remind us that we only have today. Stay strong and keep writing. You are an inspiration.
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Kathy, thank you for your honesty and bravery.
Reading your blog has helped me adjust to my own retirement and to think of it in new ways. If you’re able to keep writing and sharing I know it will help us, your readers, face both expected and unexpected things in our own lives. Hopefully your writing will be therapeutic for you as well. It’s so important for a caregiver to remember to take care of herself.
I wish you strength and many good days ahead as you work through this ‘not in a million years’ change. You and Martin are in my thoughts.
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My goodness, that was very heart-wrenching. I didn’t even know of such a diagnosis. It must be quite difficult for you and for your husband. Life can turn in a moment and every day is a gift. I live with Multiple Myeloma and although I’m enjoying a remission I know that too will eventually change. Best to you on this most challenging journey.
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Kathy, that was beautiful, none of us know what tomorrow brings. As we all get older we face many losses, and these are always hard to accept. Our Thanksgiving, as you know is always a huge family gathering. This year in our circle was shared the happiness of the expected #91 great grand child in Dec, and the announcement of #9 great great grand in April. But on the further side my younger brother announced he would enter Hospice after a battle with Prostate Cancer. Mother at 99 years has said goodby to a loving husband and friends and it never gets easier. We are blessed to have our faith and believe that Christ came at Christmas to bring us eternal salvation. You are in our prayers.
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Thank you Kathy, for the honesty in this post. Very informative as well. Many good thoughts and positive energy being sent your way.
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Kathy, how brave of you to share this aspect of your life with us, your readers. Thank you. I’ve learned so much from your posts since I found your blog about a year ago, as I was in the early stages of my own retirement, and I applaud your decision to write, going forward, on a schedule that makes sense to you. Your posts will be all the more anticipated. Keep breathing. And scream when you need to!
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I have been following your blog since I retired in 2015. After 26 years working, I found the transition difficult and your blog provided me a positive perspective. I had hoped to travel and enjoy gardening and playing with my young grandson. Within months of leaving work, I was diagnosed with a progressive lung disease which requires me to be on oxygen 24/7. This has severely restricted my mobility. I have also asked “why me” and still have my share of pity parties. Without my spouse I don’t know what I would do.
I was so sorry to learn of Martin’s diagnosis and will keep you in my prayers. Focus on the blessings you have. Stay strong and take care of yourself. I’ll look forward to your continued blog as long as you are feeling up to writing it.
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Oh, Kathy, my heart goes out to you. As a reader, I don’t know you personally, but I’ve learned so much from your blog that I feel you are part of my life. My husband has had 2 mild strokes that didn’t leave him with a lot of deficits, but he is diminished from the person he used to be. Our 7 years age difference feels more like 15. That said, I am very lucky and blessed with good health myself and, with the help of your blog, I’ve discovered a variety of new interests to pursue. No pressure, but I’ll continue to look for your blog as you feel able to write it and wish you and Martin the best you can be.
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Thank you so much for writing this heartfelt post. When my husband and I, both 61, retired in June of 2015, we “never in a million years” expected what happened next. My husband was immediately diagnosed with rheumatoid arthritis, which descended out of the blue. Last January I was diagnosed with breast cancer, another unpleasant surprise. Our new motto is Postpone Nothing, which means we try to live in the moment, travel when we can, and spend as much time as possible with our grandson. Even though this isn’t the retirement we envisioned–doctor visits, exorbitant health care expenses, and physical limitations–we’ve been pretty successful at making the most of every day and enjoying our time together.
Bravo to you for your positive attitude, creativity, and strength in managing your role as a caregiver. I so appreciate your sharing the difficult times that you and your husband are going through. As you say, there is still much to be celebrated.
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Kathy, I am sorry to hear about your husband’s illness. It must be so difficult for you and him. But I am glad you decided to share your story to help others and also receive some support yourself.
I am a recently retired psychiatric nurse of 25 years. I am so glad I retired! It is a journey, making a new life for yourself. I started volunteering for our local mental health day program, NICU and looking into the Salvation Army. I also started chair yoga which is amazing! Our yoga teacher also incorporates meditation and mindfulness. These may be helpful to you especially to help you cope with what you are going through! God bless you and your family!
Sincerely,
Cathy
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Beautifully and honestly written. I’m looking forward to your monthly blog and wish both you and Martin all the best . X0
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I enjoy reading your blogs. You are a few years ahead of me in this retirement gig. I’m still a year or two away. I’m sorry for your husbands diagnosis. I have a sister with Early onset Alzheimer’s and I know it just isn’t easy. PPA isn’t easy either, but I know there is some blessing in his ability to be with you. I hope you will continue to blog when you can. I know blogging makes me happy and as a caregiver you need happy escapes. I bet that book will come someday even if with this new added twist. Take care of yourself!
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What strength and courage it took to share this part of your retirement journey. Your husband’ s illness puts into perspective when others think they may be having a bad day, week, etc. To continue posting is admirable. I wish I could think of a fitting close to my comments, but I can’t.
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Oh my, thank you for your honesty. I am sending you virtual hugs as you go along your journey. I think my pity party would have lasted far longer than a year. Take care of the caregiver. Doing what you need to do to keep yourself sane and healthy is vital and never selfish. We are surrounded by peoples snapshots of their “perfect” lives on Fakebook, but I think most peoples lives are closer to your reality. Hugs to you and Martin.
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Wishing you the best with your changes in your life. Your husband sounds like a remarkable person. Some people that do not have a disease do not do as much as he is doing each day! He sounds like a really positive person. I battled Stage 3 cancer nine years ago & thank god each day for my life, even with all the changes at 68 years old. I tried so hard each day not to go to the dark side. I too only wanted positive people around me. Keep your spirits up!
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Hard to “like” this one. What a brave post – it breaks my heart to think about what the two of you are going through. I had never heard of Aphasia, which isn’t surprising, I guess, based on how rare it is. I’m glad you are planning to stay with your blog. Your friends out here in the blogosphere want to know how you are doing and I think it may be good therapy for you. Best wishes to the both of you on your journey.
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Writing is your gift and an important way to express yourself. Now more than ever. You have helped so many readers. Can we now be of support, advice and even, some humor, to you? We are all caregivers, one way or another. Thank you for your blogs.
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Thanks, Kathy, for sharing such a life changing occurrence. I’ve been reading your blog for a long time and it’s given me many occasions to sit back and rethink. I hope you’ll keep writing – you are a real inspiration to me.
Wishing you much strength,wisdom, and patience
M
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Hi Kathy,
I am so sorry to hear about your husband’s illness. It must be so hard. As you said life throws at us so many tragedies, challenges and we all go through trials and tribulations but what defines us as people is how we react. You reacted by starting this blog which brought so much encouragement and wisdom to so many. Please draw strength and purpose knowing that you are enriching lives of others. At my dark hours many years ago I stumbled upon Dalai Lama’s book where he talks how do we deal with terrible situations. We can either go into depression or accept the situation as part of OUR unique journey. Take care. Warm regards Renata
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I understand and support you. I took care of my sweet brother with downs syndrome and then dementia for over 10 yrs. I was still working full time. He passed away Oct 12th, just weeks ago. The experience brought joy, laughing, gratitude., stress, being overwhelmed, and every feeling in between. It put a rift in my marriage, caused anxiety and hurt feelings. I retired in 2015 at 65 yrs. old. Through it all , I had faith that life works out the way it was meant to, did my best which at times I had doubts that it was my best. I also wondered how much longer I could do it on my own. We live in a rural area and I had little support and very limited resources to get more help if needed.
I can tell you, it’s not how I envisioned my life. But, it was my choice and I have few regrets. It’s an experience that taught me more about myself that otherwise I wouldn’t know what was wonderful about myself and what I need to work on for myself to be a better person.
I miss my brother very much. I learned so much from someone that was dismissed by many because of a disability at birth. I am the one who benefited more than anyone can imagine.
I’m sorry you and many of us go through such hard and challenging times but we do get through it. It’s not easy but it can be very enlightening to who we really are, and what really matters. The people we love, no matter what situation they are in, love us back. Always remember to try to put yourself in their situation and ask yourself if this were me what would I be feeling right now. You can only do what you can. Be grateful you have a support system, resources if you need more help and YES, find joy in every day and every way you can. As you know it is not easy and will only get more difficult as time goes on. Pray, laugh, cry, love and take care of yourself. My thoughts and prayers are headed to you and Martin.
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I appreciate your courage in being honest. I started reading your blog when I retired almost 4 years ago. Yours is the only writing that talks about the experience of retirement rather than only financial planning and medical insurance. My husband and I are able to travel, and enjoy it, but so far, no grandchildren. So each of us have our disappointing realities. So please continue writing, and continue being honest. And if you’d like – let’s do lunch. Best wishes – cathy
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I feel so sad for you and I wonder if I would be as strong as you. I hope I would. I wish I could help.
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Kathy, I have been reading your blogs for about 15 months. When I first discovered it, I had been retired for about 3 months and trying to figure out how to identify myself. I went back and read most of your previous posts and in doing so I managed the post-working phase until I found my interests. Thank you for your assistance in my personal journey.
As you and Martin navigate your new journey, I know that you will find your own leaders/teachers/helpers. Please note that your blog followers are supporting you in your journey. Thank you for your willingness to share your challenges and providing an inspiration to many of us. TS
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YES! You “have today and today is good.” So is the blog post…well written of course but with depth of feeling & understanding of the roads we all travel…a beacon for others. Thanks for sharing the light.
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Kathy, I’m sorry to hear about Martin’s aphasia; it is difficult to see someone you love struggling and so changed. Thank goodness he has interests and skills that are not verbal. One of the most difficult things about the brain tumor my mother developed in her late eighties was that it deprived her of verbal skills, and those were a defining feature of her personality. I think she found the loss of the ability to write, read and speak much more difficult than the paralysis on one side of her body.
I’m glad you are going to try to continue the blog with one post a month.
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Sending blessings and warm hugs your way. Take care, Cathy
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You are courageous to talk about this and I’m sure you will help others struggling with the caregiving role that has been thrust upon them.
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Kathy, I came across your blog by accident while looking for information on the retirement “journey” that I will be starting in a few weeks. I really enjoy it. I wish both you and Martin peace in this stage of your journey. I truly hope I will be able to develop the ability to live for each day instead of trying to plan out my next few months as I have been doing all of my working life. We all may find ourselves in the same situation as you and Martin and I want to be able to look back on the days my husband and I have enjoyed each other. God bless you both!
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Your blog has meant alot to me, and I always look forward to reading each week’s entry. I’m so sorry to hear the news you’ve just shared, and just wanted you to know you’ve helped me and have inspired me over the past few years. I’m not “religious”, but God bless you
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My thoughts and prayers are with you as you continue this journey. God bless you extra special.
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I have enjoyed your blog for some time now. I can understand how difficult writing this particular blog was for you. I am a recently retired RN. I have worked entirely at bedside hospital nursing, caring for pediatric/neonatal patients for 45 yrs. I had become part of these families. reading your blog about your husband and the challenges you both face gave me the same feeling I had for my patients and families. your writing is part of your coping and healing for you. please continue to post your blogs. they are also coping and healing for your readers. you are absolutely correct – life is short; embrace each day. God bless you and give you strength. thank you. Deb Rousseau, RN from Illinois
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I am glad that you are continuing your blog. My husband and I are not in retirement mode quite yet but I do enjoy reading your blog and thinking about your suggestions and such. I do worry that all our plans for a peaceful, free retirement will be spoiled by poor health. It happened to my dad who had dreams of travel and never got to because of a cancer diagnosis. But I also relate to your caregiver thoughts because my daughter just had a baby in September who has had two heart surgeries. Needless to say, there has been some caregiving by her and I have had to be more available because she has two other children. But I think my whole family has learned also that we only have today and we are appreciating how wonderful that is. When I found your blog, I was excited to see we had Master Gardening in common, but I have learned so much more. I will add you and your husband to my prayer list and I wish you only the best.
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Kathy,
You are very brave and I applaud your selflessness and compassion. Keep writing your blogs; we are learning so much from you and these reflections. These are issues we all must face. Best wishes and prayers to you and yours…
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Hi Kathy,
When I first started reading your retirement blog, you and Martin seemed like the perfect retirement couple who have a lovely country home, could travel and enjoy writing, gardening and art projects. Admittedly, I was a bit envious, as I retired to become a caregiver to my husband, Jack, who lost most of his walking ability. We had to scrap our plans to move to a country home we had already put a deposit on, as well as our bucket list travel plans. Travel now is short rides to the grocery store, doctors, and our one guilty pleasure of craft breweries. I used to say everyone has a “saurus” or at least one tough problem in life, like not enjoying the time we have left the way we wanted to, lack of love, money, or a serious health issue. The best we can do is learn patience and make the best of it, which is sometimes not easy. God bless you two and thanks so much for writing your blog. Enjoy your posts! ~ Mary A
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Such an important post for truth telling in retirement. I was touched by your words and your experiences. Your descriptions of aphasia were so accurate. Thank you and may you have increased strength and patience with your life path. Write on … Judy
On Tue, Nov 28, 2017 at 10:43 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 found your blog after having made my decision to retire July 2016. My final decision was made due to health issues with my husband, to be able to spend quality time with him. I am very sorry for what you must be going through and wish you as many good days as possible for you and Martin. Thank you for sharing and my prayers go out to you both. Tia
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Thank you to everyone for the thoughts, prayers and encouragement. I enjoyed reading all of the comments and suggestions and deeply appreciate the caring from all of you. My heart goes out to those of you who are experiencing or have experienced a similar situation. Life can sometimes seem unjust and certainly painful, but it is the life we have, so kudos to everyone making the best of a tough situation whatever it is. Blessings. Kathy
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Kathy, as usual, your authenticity is inspirational. While presenting the reality and the pain, you also manage to share the positive approach to life I have come to love about you. I do hope you continue your blogging – as many have pointed out, you inspire many of us on this journey and I would miss your voice of reason. But I understand if you can’t – as you’ve repeatedly told me….do what you need to do for you.
Your positive attitude about this situation definitely has helped me as I face my own recently diagnosed health issue. No pity party for me.. enjoy & live each day to its fullest. Hugs to you, and to Martin as well.
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Kathy, your post is very moving and honest about real life after retirement. Your posts have been an inspiration for me on my retirement journey. Life does have a tendency to bring us back to what is the most important, the present moment, and your post conveys this truth for all of us to act upon. Take care. You are both in my prayers.
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I am so sorry to hear about Martin’s health issue and your struggles for the last year. I have always admired your honesty, compassion and kindness that you have shown so many through your blog. It saddens me that you have had the opposite experience with others during this trying time. I read your blog yesterday and had to wait a day to reply due to my true sadness for you both . A BIG hug for the both of you. I will be sending you lots of positive energy and thoughts.
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Thank you for being real and honest. Life at any stage is not always all sunshine and rainbows. I admire your ability to see the good and remain grateful in the face of such a hard circumstance. The grace with which you are traversing this unexpected turn of events is an inspiration. Keep on writing and keep on being real! Take care!
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I think it was Bette Davis who said, “Old age ain’t for sissies”. You’re far from old, but I’m 81 and she was right! Best wishes to you and Martin. I’ll look forward to your blog for as long/often as you want to write it.
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Thanks Kathy for sharing your very personal experience. I have enjoyed reading your blog which provided much inspiration prior to our retirement. We have now embarked upon our journey, beginning with the sale of our family home yesterday. You have reminded me of the importance of making the most of every day we have together. My thoughts and best wishes to you both.
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Kathy – you are so honest and strong to put this out there, your challenges and feelings as a caretaker, retiree, life lover, writer – you are a person of many parts. Stay strong, take care of yourself while you are taking care of others. All the best.
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Dear Kathy, thank you for sharing your situation with us. I so agree that adversity creeps in when least expected, and feel for the journey you and Martin have found yourselves undertaking, with all of the ramifications and complexities of others’ reactions and the unfolding impacts on different aspects of daily living.
I send my love and support, and my gratitude for your decision to continue with a monthly post on this blog, which I value very much. I’m recently retired, and appreciate greatly reading of your experiences and thoughts around retirement. I worked in a neuro support environment, but for a different condition, but perhaps have some understanding re life changing diagnoses and the impact for loved ones as well as the person who has the condition.
Please be sure that I will hold you both in my thoughts and send my warmest wishes to you both from NZ (visiting my offspring over Christmas and New Year, a retirement goal, but normally resident in Scotland).
With hugs aplenty, and with you in spirit, WeeMidgie xxx
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