As I was lying in bed this morning reintroducing my husband to his favorite game of solitaire on his recently repaired iPad, myriad thoughts swirled through my mind. In less than three weeks, a huge but essential change will occur in our lives. John has yet to be told, but our family and I have lived with the reality for nearly a month.
My bright, beautiful husband of 63 plus years was diagnosed three years ago with Alzheimer’s, one of nature’s cruelest diseases. To watch a once brilliant man’s mind slowly disappear is tantamount to watching someone you love slowly slip into oblivion….like stepping into quick sand which relentlessly sucks the victim downward until he disappears. It is a tortuous journey. The only blessing is that he doesn’t realize the extent of his affliction. If he does, he doesn’t talk about it.
Occasional symptoms began appearing several years ago. I attributed them to his chronic back pain or the medications that made him a bit loopy. In 2012 John suffered a severe bout of sepsis resulting from a tick bite that developed into Rocky Mountain Spotted Fever. One night in the ER we almost lost him, as his blood pressure dipped precariously. But thanks to the quick-thinking hospitalist on duty, he learned we lived in a wooded area, where our pool equipment was located among underbrush. The doctor announced, “I think your husband’s sepsis is caused by a tick bite.” Unable to find evidence of the little bugger anywhere on John’s body, the doctor followed his gut feeling and administered effective antibiotics……plus he called in a seasoned infectious disease specialist.
For eight days my husband was in ICU, treated by a competent staff and receiving much support from our family and close friends. I remember driving home at 2AM the first night of his hospitalization, praying every mile that John would recover….by then I was scared silly.
The one thing John remembers about that very feverish night was hearing me say to the nurses, “If you want to elevate his blood pressure, just show him a picture of Barack Obama!” Oh my, that quip fell on deaf ears, all except John’s who still remembers laughing. The busy nurses were impervious to my joke! Humor was my defense mechanism, as the reality of John’s precarious situation nudged my resistant brain.
To say that a patient with sepsis suffers residual effects from the illness is accurate. For months after John’s hospitalization he was anxious and weary. I decided to do two things. First we needed to focus on his recovery. Thanks to our primary care doctor, we found a wonderful personal trainer named Nadine, who helped rebuild John’s strength. Eventually she started to work with me, too, and until Covid we looked forward to seeing her twice a week. We are still fast friends. We love her and her husband, and I view her as a surrogate daughter. Can’t wait ‘til she can return to work with me again. SOON, I hope,
Secondly, thanks to our dear pediatric neuro psychologist daughter-in-law Stephanie and her therapist father, John was introduced to a wonderful clinician who taught my husband how to manage the panic attacks that had plagued him for years but returned with vengeance after sepsis. For several years, when anxiety surfaced, John met with Dr. C and always felt better as a result. I truly believe that although John never reclaimed his old self, he had many good years. And being bright and witty, he was able to mask many signs of incipient dementia.
The timing of our decision to downsize and move to our long-term care facility was perfect. Nearly four years ago. We unloaded a ton of stuff, even family antique furniture was donated, as the demand for “brown furniture” had vanished.
We renovated our retirement cottage, made it “ours,” and built a fence for our puppy Pippa so that she could scamper freely around the back yard. We have loved this cottage…..and in this house, I have my own office… a treat beyond measure. John told me, it is “your turn” to have the office, as you are the writer! Sorta, kinda…Love it.
As hard as it was to leave our beloved Kinloch house, this cottage has been the source of many happy days: visits from all our family, one-on-one weeks with grandchildren, and lots of good fun together; meeting lovely new friends and entertaining long-time friends from near and far. So, how can we have any regrets? We can’t.
When Covid hit John started to experience multiple falls. Luckily, except for the first one that caused a concussion (prior to the virus), the others have left him mostly unscathed. Rap on wood! Battered and bruised, but no broken bones. Thanks to Nadine, I think John was physically stronger than most men his age…..but mentally his decline accelerated.
While the professionals here at Cedarfield are enormously helpful and supportive, they have consistently suggested that the time WILL come when, even with parttime help, caring for John will be too much for me. “As one person, you are doing the job 24-7 virtually alone whereas in Memory Care and Health Care there are forty people daily to do the job. Your health must be considered, too.”
Although I have always prided myself on having much energy, it has dwindled…and being up at night with John multiple times is flat out exhausting. Some nights are good, but they are fewer. And three AM frequently finds his confusion at its worst: wanting to “go home, to get the car and go see so and so, to go pick up the boys,” etc. etc.
Our four far flung adult children have been fabulous as have our daughters-in-law. Older son Sam calls almost daily and is the “mouth that roared!” Because he and his wife Joan witnessed the progression of her dad’s decline into Alzheimer’s, they are well-versed on the vagaries of the disease. Even with constant help, it took its toll on Joan’s mother, who after husband Bob died, suffered a mild stroke. “We can’t let this happen to you, mom. We can’t lose both of you.”
April 21 is moving date to lovely new Memory Care unit for my hubby…..he does not know, and I have experienced tortuous guilt, traitorous feelings, acute anxiety and everything negative that you can imagine. “How can I do this to the man I have loved since I was 17 years old?” Thankfully, common sense, good advice and much reassurance from the professionals have convinced me there is no alternative.
This morning after a rough night, John tumbled yet again as he tried to get out of his side of the bed. I believe this fall is number 14 or 15 since last March. As I looked into his foggy eyes, I realized that this was another sign from Above. ”Let go, Joy, it is time. John needs more than you can give him.”
For anyone caring for a spouse with dementia, you know the shock when your loved one forgets who you are. This is happening more and more. Sometimes the lapse is only for few minutes, but last night during dinner, John turned to me and said, “Are you still living in Shaker Heights?” (This is where he and I grew up.) Later he called me Charlotte, his mother. To say this doesn’t hurt is like saying that I am made of iron. Of course it hurts, but he has no idea, Another signal that the quick sand is swallowing him up.
On April 19 our Seattle Susie will fly here to spend two weeks with me….to assist in the move, and to be her helpful loving self. Later on our other chickies will congregate, and we will be able to visit John in his spacious new environment. My prayer is that he will adjust and find more stimulation for his once razor-sharp mind. That he will find comfort in knowing that many people will help care for him, even though there are none who can love him as much as our family and I do.
An epiphany: after decades of a successful marriage one must concentrate on the positive. Rather than be greedy, wanting more and more time together, I must be grateful.
In many ways these last weeks with John at home have made me cherish our good fortune with new regard. To love each other after all these years, now more than ever, and to think of those friends whose spouses were prematurely snatched from them either by death or divorce. I cannot allow myself to complain, yet I can acknowledge that try as I might, this marks a bona fide grieving period as I witness Alzheimer’s enveloping our lives.
Being raised a Presbyterian and being a firm believer in God, I know that our lives have been richly blessed. And I will never take that for granted (or any good day for the rest of our lives).
Many of you know wedding vows include the phrase, “Until death us do part” or in our case, “As long as we both shall live.” Even at ages 19 and 22, the handwriting of FOREVER was on the wall. Commitment through sickness and health, the good and the rough times. How lucky we are!
I share this story so that those of you who read it will know that even amid the worst challenges of life, you can take comfort in the many blessings surrounding you. And if you are really young, you will do all you can to keep a marriage vibrant and thriving. It is not meant to be easy, but if you make the right choices, you will be eternally glad.
Emily Bronte wrote in her classic book Wuthering Heights: “…he’s more myself than I am. Whatever our souls are made of, his and mine are the same.”
As long as we both shall live.
Top photo: Bigstock