I Don't Talk to My Wife Anymore:One Couple's Account on Dealing with Alzheimer's
It is said one-half of marriages end in divorce. Marcie and I are of the other 50%. We are not by any means exceptional. Besides having that dreamy gaze into each other's eyes, we are a team. We tag-teamed on raising our kids. The two of us joined together as leaders in Boy Scouts, and as a team, we took part in Big Brothers Big Sisters.
But the most important team effort was Marcie's undying support to me being on our city's full-time fire department for 27 years. I was already on a volunteer fire department when we got married. Fire and police hold records in divorces, with the '24 hours on, 24 hours off' schedule being a little obstructive to family.
Did Marcie ever waver? Never. She was as dedicated to the fire service as I was. We are a team.
Years ago, on the "The Tonight Show," Johnny Carson asked Truman Capote to describe the word "marriage" in as few words as possible. Capote answered, "Unfinished sentences." This has stuck with me. A long-partnered couple can communicate in a very special, almost Neanderthal way, each of them knowing what their mate is thinking. Now, apply Alzheimer's Disease to one of the partners.
Dementia. Alzheimer's. Words that were not familiar to our generation a half-century ago. We knew of senility, senile. Maybe a light-hearted, "touched in the head" or even "doddering" was used.
"All-Timer's": noun Alz ·he i ·me r ' s disease, 'alts-,hi-merz-, I couldn't even spell it until recently.
The Alzheimer's Association lists seven stages of Alzheimer's:
Stage 1: No impairment
Stage 2: Very mild decline
Stage 3: Mild decline
Stage 4: Moderate decline
Stage 5: Moderately severe decline
Stage 6: Severe decline
Stage 7: Very severe decline
In September of 2012, our son Mike, daughter Sandy, and I noticed Mom's memory slipping. Our next-door neighbors easily picked up on Marcie's trouble too. She created a knack for taking a couple of past family stories and weaving them into one, sometimes coinciding with a present situation. All of us thought it was her way of trying to deal with our daughter, Dawn's recent passing.
It wasn't. Marcie was diagnosed with Alzheimer's. It was at this time we recalled that Marcie's mother suffered from dementia. It was little things at first, déjà vu being prevalent. She 'remembered' seeing things that were impossible for us to have seen, or being somewhere that was impossible for us to have been.
When overtaking a semitrailer truck, she would wave, knowing that the truck driver remembered her "from the other time we saw him." She would [End Page 96] say, "We parked next to this same car the other time we were here." Or she would walk up to strangers and, much to their surprise, greet them like longtime friends.
During this time, I took over doling out her medication as I caught her taking them out of the prescribed sequence. Our doctor said she couldn't be left alone anymore.
I started keeping notes. When we would have an appointment with the doctor, I would mail a detailed report ahead explaining Marcie's new or changed symptoms—I didn't want to allow myself to forget anything that I wanted them to know and understand. This stage of our Alzheimer's experience makes me stop, think, and wonder when my mind goes blank; am I sharing Marcie's condition? Am I flying under the radar? How would Marcie react if our roles were reversed?
It is very uncomfortable talking about Marcie's symptoms, whether in front of her or behind her back. This feels disgraceful. She is, by nature, a suspicious person. Her lifelong ability to mistrust has worsened with the onset of Alzheimer's. I need to state the difficult time I have doing this—writing behind Marcie's back, just as I did when I reported to the doctor. While encouraged to write this piece, I had and still have great reservations about doing so.
Marcie's routine of repeating questions became the norm. She would ask a question, and in 15 minutes, ask it again as if it was the first time. At first, this tries on one's patience. A series of the same repeated question could last an hour or more. As the disease progressed, the fifteen-minute intervals shortened over time, cutting down to five-minute repetitions. One needs to learn and remember that one has complete control over one's own emotions, but the partner with Alzheimer's has a complete lack of control.
We were to visit Sandy's family for four days in August 2015. Marcie took three days to pack her suitcase. Right before we were to leave, Sandy was put in the hospital with a gallbladder attack.
Marcie went into a tantrum. "Sandy always spoils our plans whenever we plan on doing something special." Marcie couldn't tie Sandy's emergency and our four-day visit into the one it had become. The tantrum turned into an anxiety attack. In the 60 years we've been 'dating,' I have never seen Marcie this angry. Never. I took her to the doctor. Since then, she has been on lorazepam for her anxiety. She will blindside me every now and then, but if I can downplay it fast enough, she might cool off. She is an angrier person with this Alzheimer's, not like the Marcie I lived with all those years.
We did go on the four-day planned trip, not just as a visit, but to help Sandy recuperate. Within two days, Marcie was inflicted with a serious case of 'homesickness.'
The next month, we planned another four-day trip to visit Mike and his family. The four days were shortened to two days. The third morning as we were heading home, Marcie said, "It will feel so good to be back home." After that, we were able to take overnighters, but our days of taking mini-trips were over. Familiarity plays a huge part in Alzheimer's.
I spoke of Marcie as being angrier. I need to reveal my own battle with anger. After sharing our lives for over 50 years, we consider it a happy and blessed marriage. However, Alzheimer's drives a sharp jagged wedge into those thoughts. Frustration quickly becomes anger, and there are times when one lashes out at the Alzheimer's patient. The caregiver is desperately trying to learn to cope by use of "on the job training." I am embarrassed here because I have lashed out at Marcie. That happens when one's Soulmate makes those emotional rendering comments and makes one's heart leap up into one's throat.
There were going to be many of these trying moments when I needed to look away and do the mandatory "ten count." Or even the "Exit, Stage Left" maneuver and slip into another room to collect my wits. Marcie's bouts with anger sometimes stem from frustration, maybe knowing or realizing she is losing her memory.
A spring morning when we were into the greater decline, I asked my life's partner and supreme cook if she wanted to make pancakes for her husband.
Pancakes it was to be. Before, she always could cook or bake by memory. This time Marcie couldn't even comprehend the directions printed on the back [End Page 97] of the box. We tag-teamed the effort and made it through. I got my pancakes.
Something can be learned here. We tend to accept our responsibilities as married couples, playing out the husband/wife role, depending on each other as we do. Over the years of being together, we had taken a lot of this for granted.
When Alzheimer's comes between this match, the marital relationship changes. In a way, the bond becomes stronger. Normally both partners are independent. But, the Alzheimer's patient loses that independence and relies more on his or her partner. The partner, in turn, watches over his or her spouse with Alzheimer's and is now a caregiver by on-the-job training, spreading his or her marital obligation net wider.
"For better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish."
Marcie now needed to be constantly watched, an undertaking very similar to parents babysitting their little ones before they traveled off to kindergarten. I was now:
• Doling out Marcie's meds.
• Watching over and giving her a pain-reliever.
• Helping her choose her outfit—a squabble ensued when changing from winter to spring clothes.
• Helping her in and out of the car with her walker, walking side by side, hand in hand again.
Marcie and I have developed a lifetime teasing and biting romance. We act out what could be construed as a tired quarreling married couple, always snapping at each other. Some people probably thought we really don't like each other, but if they could catch the glint in our eyes, people would accept our ability to tease and laugh at life. We laugh at ourselves and laugh at each other, sometimes using our favorite loving adoring words: "You Old Bag," "Old Grannie," and "You Old Man."
When I would be home and Marcie would come home from her work earlier than expected, I started, in turn, to ask her co-workers to call me so I could get my "girlfriend out of the house." It made for good laughs as her friends would call and giggle to warn me.
Marcie and I took this a step further, and I invented my imaginary 'girlfriend,' which Marcie would quickly bring my manly fantasy to ground by exclaiming, "In your dreams, Binning!"
I have, in the last couple of years, curtailed such humor because of our struggle with Alzheimer's. I'm not taking a chance of Marcie turning inward and letting our old comical routines lead her astray. Both of us deal with her Alzheimer's imagination. Those fun times of ours are gone now.
During a clinic appointment, I hooked a 100-page booklet from their display stand. The book is titled: "Caring for a Person with Alzheimer's Disease," by the National Institute on Aging. About mid-way, it explains, "One needs to keep in mind, one is not talking to the Alzheimer's patient, but talking to the disease." Please, read that over, because these are very powerful words. "One needs to keep in mind, one is not talking to the Alzheimer's patient, but talking to the disease."
Marcie cut my hair and our son's hair for 43 years. In April 2017, she raised the comb and scissors over my head and said, "Now, where do I start?" I answered my helpmate, "We start by returning the tools to the box." That spelled the end of home haircuts for this lad. Marcie took this termination very well and never questioned our giving up on our homespun haircuts.
In May of that year, Marcie looked at me and said, "Where's my husband?"
Me: "I'm your husband."
"No, you're my Daddy."
All the time Marcie and I have been together, she has never called her father "Daddy" or even called me that. After another give and take, I tried to switch her back on the main track by: "Why, 'You Old Bag,' You know me!" I'm the only one who uses that nickname for her. 'Old Bag' should have brought her back. It was I who had to switch over to the sidetrack that evening. It was another Alzheimer's on-the-job training: getting along by going along.
The following month, the inevitable happened. My Soulmate of 56 years and I were separated. She slipped outside without her walker and fell. I was told by the medical people 50-ways-to-Sunday why I could not take care of her anymore. She needed a 24/7 level of care, which they claimed I couldn't provide. [End Page 98]
Bless the caseworker's heart when she was trying to convince me to agree to give Marcie up. I asked her pointedly just to imagine how she would feel letting her husband go. I noticed her eyes teared up. It is easy to tell someone else to do it. Believe me—it's a real bitch to do it though.
I tried to counter by telling them I could still be by her 24/7. I had always planned when this stage came on, to install motion detectors covering each outside door. So I did, and tested them, even without my hearing aids. When I returned to the hospital, they asked if I would be able to hear them while sleeping. Score: Hospital = 1, Binning = 0.
With my keen, sensitive Scandinavian mind, I said I'd get a pair of leg shackles for us to wear and purchase a two-place loveseat. My dear daughter, ever supportive of her father, even abandoned me. Our dear physician comes to my aid, saying, "Superglue would work, too." I was outvoted again. Hospital = 2, Binning = 0.
Marcie is a patient in the dementia unit of a swell local health care facility now. Our once happy home is now silent as a tomb.
We are having a time of Marcie adjusting to her new home. I started dropping by daily to visit until the staff asked that I come only two times a week to allow Marcie to adjust to her "new home." Hard on Marcie, hard on me. In her mind, she connects me with "home."
When friends ask to visit her, they wonder if Marcie will remember them. She may or may not at first. But I can say 15 minutes after they leave, she will more than likely forget the visit. This should not, by any means, be a deterrent. The most important thing is to put a smile on her face!
I mentioned our taking day trips. It would be a nice treat for Marcie and me to enjoy a leisurely ride in the country as before our separation. As I write, the fall colors are starting—our favorite time of the year. However, to return her to the nursing home after such an outing would be disastrous. Another point won by Alzheimer's.
Once in a while, the nursing home would let Marcie call me at home in the evening. Her only subject was she wanted me to come to take her home. The calls ranged from 'her paying the motel,' and she finished her job or work and is ready to come home. These calls always digressed badly to where I finally needed to tell them she shouldn't be able to call me anymore. Talking by phone only connected us together and made our separation worse.
My visits take an up-or-down quality. Sometimes I need to leave in 10–15 minutes because our get-together is heading 'into the dumpster' and I can't bring her out of it. These times my Soulmate is telling me how much she hates the place and wants to come home with me. It is heartbreaking, to say the least.
I try to be there when Marcie is at the top of her anxiety medicine's effect. If I have hit it right, we will depart an hour later under congenial terms. The staff suggested I come around during an activity, which does work. Marcie is divided between me and the both of us taking part in the activity.
Another item that happens between us is absolutely deplorable. That is lying to her. I cannot tell Marcie the truth when she asks the same pointed questions about going home. Most of our conversations are very one-sided, and she tends to zero in on this subject.
Another instance of lying is when making my departure at a favorable time. When I feel things are going sour, the plan is to leave before things explode. Usually, the lie is such that a friend is stopping by the house for me to help him with a project. Once Marcie asked me if I was coming home (back to her) after finishing the work.
Ninety days into her stay in the nursing home, I've taken to grade our visits on a scale of 1 to 10. A number 1 being the 10–15 minute "in the dumpster visit" to number 5 being a congenial visit, lasting about an hour. There will never be a number 10; there will never be a perfect visit.
A number 1 visit is with her crying as I leave. "When are we going home together?" "When are you going to come and live with me?" "I hate this place. I want to go with you." Sometimes these questions are asked in the first 15 minutes. But, the real "quarterback sack" is to hear her ask, "Are we ever going to be together again?"
Marcie and I do not have any meaningful conversations. When I mention one of our friends, she says she remembers them, and the subject fades [End Page 99] away. There isn't a chance of holding a husband and wife discussion.
Naturally, both of us want to live together again. However, our new situation with Marcie in the nursing home provides her with regular organized daily activities that I cannot provide for her at home. For instance, some of their added minihomemaking chores make Marcie feel at home. In Marcie's mind, she is helping them, or she thinks she has been working at her place of employment.
You can understand why I titled this writing: "I Don't Talk to My Wife Anymore." It is very trying to look into those blue eyes and ask if anyone came around 'this morning.' For instance, when I know someone stopped by to see Marcie on a certain morning, and I ask if anyone stopped by, her sad answer to me is: "No, nobody has come to see me today."
This isn't a random weekly happening. I could have easily gone on and on with our Alzheimer's events from the past five years. Dealing with an Alzheimer's patient is a 7-day-per-week task. This writing only scratches the surface of everyday occurrences.
I am attempting to prepare for our future. (Fire Service labels this as "Pre-Fire Planning.") I have taken the opportunity to observe the others in Marcie's dementia unit, who are advanced beyond her and me in this illness.
Marcie and I are presently in Alzheimer's 6th stage, and when we slip into the next stage, our 56 years of closeness will separate and drift away. I know Marcie won't see me as I see her. We don't get to choose the way we depart this world. Things could be worse, depending a lot on how you want to look at it or want to deal with it.
I gave the good fight, and kept on, knowing I was waging a losing battle. We are established at the nursing home now, and I am more than comfortable with the care my Soulmate is getting. With that acknowledgment given, there is still the stigma, "What if I could do better?" Let it be known and understood, we who are left will ask: 'Have we abandoned our life's partner?' The truthful answer is: It's imagined abandonment.
I may seem rather cold some times in this writing when sharing Marcie and my Alzheimer's burden.
Marcie and I have been wrestling with Alzheimer's since 2012. The books, numerous articles being read and studied, and other folks sharing their experiences helped to take some of the edge off, aiding me to deal with this in a somewhat calm manner. I recall the statement: "One needs to keep in mind, one is not talking to the Alzheimer's patient, but talking to the disease." And, I assure you I have my private, "Daily Tributes to Marcie and My Successful Lifetime Partnership."
On behalf of my Soulmate, Marcie, I give my deep appreciation to Dr. Vijay Aswani and Dr. Michael J. Schulein for convincing me to openly share Marcie and my experiences fighting the losing battle with Alzheimer's Disease. I need to give my heartfelt thanks to our kids, Mike and Sandy, for not allowing me to back out of this task. I extend my gratitude to our next-door neighbors, Jerry and Eileen, who shared their experiences of their parents with dementia, worked along with Marcie during her confused times and helped me by proofreading this project.