by Larry Peterson
N.B. This is a bit unusual because I am sharing and also trying to inform. Hope you don’t mind.
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Unexpectedly, my life’s ultimate challenge is now upon me. I have become the primary caregiver to my wife who has entered a world from which there is no turning back. She has Alzheimer’s Disease.
Marty has been undergoing chemo treatments for over three years for Lymphoma. Subtle cognitive changes became apparent about a year or so ago. I spoke to the oncologist about this and he said he had noticed slight differences also. I asked if long term chemotherapy treatments could cause this and he shrugged. I “Googled” the question and page after page of “chemo brain” info popped up. They used names like “The Fog”, or PCCI (Post Chemotherapy Cognitive Impairment) or maybe CRCD (Cancer Related Cognitive Dysfunction) and, of course, plain old Chemobrain. Bottom line—I know in my heart that chemotherapy caused cognitive problems for Marty. I had to ask myself, how many others?
On July 31, she fell and broke her ankle. She needed surgery and did not come out of the anesthesia properly. She did not even know what her name was or where she lived. After several weeks, some cognition did return but nothing like pre-surgery. Chemo started the ball rolling and anesthesia pushed her off the cliff into the dark sea of cognitive dysfunction. Another label still awaited.
Several weeks later a serious heart problem arose. it was Afib (Atrial Fibrillation) resulting in more oxygen deprivation. (I am told that this is also a result of the anesthesia six weeks earlier). She was admitted to Neuro-ICU and, in addition to the heart problems, was diagnosed with Alzheimer’s Disease. She spent another 34 days in the hospital and rehab and came home on October 26. She was not nor will ever be the woman I knew three months earlier. In fact, the person who she was will ultimately vanish into a blackness none of us can understand.
For me, being my wife’s primary caregiver and watching her life slowly vanish right before my eyes is the most helpless, heartbreaking thing I could have ever imagined. My first wife, Loretta, died of cancer 12 years ago and she suffered a great deal. I was also her primary caregiver. I have to admit that was a heart wrenching road to travel, but I just never thought another road to travel would appear and could lead to this.
Marty keeps asking me if we are married and “is this our house?” She cannot remember things from one minute to the next, yet seems almost normal to anyone who might speak to her for a short time. I have never seen anything like this. She will get up and spontaneously get the toothpaste and put it somewhere it does not belong, like the closet. Yet she can still play the piano. I am told that she will soon forget how. I could go on and on, but what is the point? It only gets worse and worse until there is no more.
I just want you all to be aware of this chemo “thing.” Chemo has saved the lives of countless thousands of cancer patients over the years. But there is a sidebar to all of that that must be addressed. It is something called “chemo brain.” As for me, right now I do not know if all those chemo treatments were ever worth it. Her cancer is back.
Please pray for both of us.
LarryPeterson
Larry is a Catholic/Christian author and blogger and posts weekly commentary. His work has appeared in such publications as Zenit from Rome, Aleteia, New Evangelists, Top Catholic Blogs, Big Pulpit, Catholic365.com and others. His first children's picture book, "Slippery Willie's Stupid, Ugly Shoes" was published in 2011. In 2012, his full-length novel, "The Priest and the Peaches" was released. His second novel, "The Demons of Abadon", was released in the spring of 2016. Larry’s latest novel, “Horizon Homeless” was released in ebook format in May of 2017 and the paperback followed on July 27, 2017. Larry belongs to the Catholic Writer’s Guild, The Catholic Writer’s Society, The Knights of Columbus, and the St. Vincent de Paul Society. He has been an Extraordinary Minister of Holy Communion for over twenty years bringing communion to the homebound and hospitalized. He lives in Pinellas Park, Florida and his kids and six grandchildren all live within three miles of each other. His first wife died of cancer in 2003. He remarried four years later and became the primary caregiver for his wife, Martha who came down with Non-Hodgins Lymphoma in 2011. The cancer was in remission when she was diagnosed with Alzheimer's Disease in October of 2014. Sadly and unexpectedly, Martha passed away on March 27, 2017. The writer says, "God has me where he needs me and I try my best to make Him proud. Larry’s blog site is http://www.slipperywillie.blogspot.com You can find more at www.larrypeterson-author.com
Dear Larry,
My prayers are with you during this extremely difficult journey. However, I wanted to share with you two stories that I believe demonstrate that although we can’t communicate and get the feedback we want, the person is totally aware of everything. First, my mother, who had this terrible disease for 18 years, was once rushed to the hospital because she was failing fast. When she woke up, she was “normal” for about 12 hours. She even talked about the current President and all the latest news like she hadn’t been absent for years! Unfortunately, her mind drifted away again by evening. The second case involved a nurse friend of mine who had cared for her husband who hadn’t recognized her for a long time. On his death bed, he became alert for a few minutes. Calling her by name, he took her hand and looked into her eyes saying, “I know everything you did for me!” So take heart and know that your wife and love knows everything you say and do, even if you don’t see the recognition.
Thank you Barbara,
Prayers are the BEST.
God bless,
Larry
Thanks so much, Larry. The point of sharing, even though it might not change circumstances, is to connect with the community God provides so we don’t have to go through challenges alone. I’m so glad you shared. You are both in my prayers.
Larry:
My prayers are with you and Mary at this most difficult time. I will post prayer requests in our Adoration Chapel as well. Our loving Lord will ever be at your sides, helping you both to carry this cross.
Thank you Michael,
Posting in your Adoration Chapel is deeply appreciated. God bless you,
Larry P
Larry,
You and Marty are in my prayers and will remain there. I really don’t know what else to say.
Dennis
Thanks Dennis, this is a tough one. Prayers are the best medicine.
Thanks again and God bless you,
Larry
Larry, praying for you and your wife as you walk this road to the cross together. I’ve watched my mother help my dad until she held his hand at his death, and my grandmother succumb to the same condition. It is painful and slow, puzzling and the type of disease that makes those who love the person afflicted want to scream at the universe, scream at the cross and then cry because it feels so broken. I know this deep grief and I will keep you in my prayers. My mother recommended the book Still Alice. I didn’t like it as much as I wanted to, but it did help. She also joined a support group for caregivers of people with Alzheimer’s. She didn’t like it as much as she wanted to, but it helped also. Having people to talk with, journal keeping, prayer and knowing when to ask for help and being proactive about it makes all the difference. Prayers.
Thanks Sherry,
You are absolutely right about staying “engaged” with others when dealing with this demonic disease. As a caregiver, it is too unpredictable to handle on your own.
Praying for you too,
God bless,
Larry
I will pray for you and for her, Larry. It is hard to forget your warning regarding chemo treatment. The Maryland bishops put out a small pamphlet–the pamphlet is out of print but they have it up on their website–reviewing our obligations as Catholics for treatment. If any treatment causes severe problems, including secondary ones, we are allowed to refuse it (not ordinary treatments without those problems, however). Here’s the link: http://www.mdcathcon.org/publications
Larry, you yourself will suffer–have already. There are many reasons why we humans suffer–original sin, the consequences of our own sins, the consequences on us of the sins of others, and the last reason given in one traditional source (of thirteen reasons–I’m sorry I cannot remember the name) that our pastor shared with us recently in a series of sermons is this: it is a privilege given to those chosen by Christ to conform them to Himself in His suffering. In all aspects, it is our pathway to heaven, Father said. Our suffering is our ticket.
I read a little booklet that I think I originally saw here on the Guild website called A Body in Prayer which recommended that we try our best to smile at God every day, in the midst of our suffering. Now, of course we probably all say often enough, ‘I accept it, I accept.’ But it’s quite another thing to smile in the midst of it, to really smile. Then He knows we mean it. And of course we automatically feel better–smiling has that effect. I find it difficult. The author mentioned that if we can’t smile, then cry really loud. I can do that.
I am sorry for your suffering, Larry, but also so very glad to remember that as Catholics, we know what to do with it. And thank you for your warning. I have found it to be true of my heart surgery. Before my sudden small heart attack, I was fine, I was symptom free, I went to Pilates twice a week, camping, hiking, gardening, no problems except being a tiny bit out of breath after along flight of stairs. Did not interfere at all. Now, two of the arteries they said they rebuilt, they did not, it didn’t ‘take,’ and I’m out of breath most of the time, and constantly dizzy from the drugs you have to take to maintain your new heart, which they don’t talk about before hand. Not to mention the big bunch of brain cells I lost (apparently where I put any number of items, and even some life events are ‘gone’) because of the anesthetic, like your wife. It is no joke. Modern medicine is — profit driven and sometimes cruel and you have to be a phd yourself to understand.
Prayers and best wishes to you.
Thanks, Janet, for taking the time to leave such a beautiful response. The link you posted was excellent and I printed it out to keep. You have been “round the block” yourself and I will be praying for you too.
God bless you,
Larry
Dear Larry,
I am so very sorry for the heartbreak and challenges your wife and you are experiencing. I pray Christ’s healing balm may wrape you both in peace surpassing understanding.
I know what I usually do with unsolicited advice via the interwebs, so I understand if you pay this no mind, but if you haven’t, you may want to look into a ketogenic diet for you wife. I experience amazing improvements because of it with my bludgeoned brain (8+ concussions). I recommend the Perfect Health Diet, without the “safe carbs.”
May God startle you both with joy!
With abandon in Jesus our Christ,
Patrick