I wish more people had been aware of my husband’s suffering and offered him support too.–JN
The role of a spouse/partner is made more complex when a medical crisis strikes. Spouses/partners are often the primary caretakers, followed by adult children, close friends, and paid staff. The primary caretaker becomes the leader in the fight for wellness. This demands time. Time to make appointments, handle insurance, fill others in on what is occurring, and take on more responsibilities at home. Leisure activities, work, holidays, and other family members take a back seat to the illness.
Emotional reactions run the gamut among partners. The partner’s reactions do not significantly differ from the experiences felt by patients; the closeness of the relationship heightens responses and fears. How each of us responds in these situations varies depending upon a number of factors, such as age, gender, financial impact, prognosis, and personality.
Identifying the way you usually respond to stress can help you assess how you are likely to respond to the current situation. For example, if you tend to respond to stress by finding information about a situation, you are likely to research the symptoms, treatments, surgery and the like that could fit your partner’s situation. If you are inclined to avoid uncomfortable situations, you might close yourself off from the events around you, as it can become too distressing for you. Marie Fricker wrote a book, All in My Head: How a Hypochondriac Beat Brain Cancer, about her brain cancer. She has an amazing way of sharing pain, angst, and real-life experiences through description and humor. Yes, I said humor. In her book, she reveals how her husband, who tends to avoid emotions, handled part of her journey.
My husband Al has never been diagnosed with a life-threatening disease, but if he were, I know he would survive. His life is a carefully scheduled routine from which he never wavers… My brain tumor was not part of Al Fricker’s neatly ordered routine. At first, he was completely in denial, believing that this disastrous turn of events had never really occurred. Then when he realized it was true, Al decided that he could continue his normal sixty-hour work schedule, and I would be all right with the help of others in my life.[1]
The story unfolds with Al negatively reacting to Marie’s request to launder a load of pajamas for her. His reaction is brought up short by their adult daughter, who chastises him. Their daughter’s reaction jolts him to move to a different response style. He offers a sincere apology, along with some tears, and the incident shifts him to being more helpful.
Is Al likely to shift back into his “life as normal” stance? Yes. We are who we are based upon a lifetime of learning and habits — but developing newer ways to handle the enormity of a medical crisis expands us in ways we might otherwise never experience.
I began to feel separate from the rest of the world, as if we were in a different universe. I felt envious of other couples who seemed to be contentedly going about their everyday tasks without a care in the world.–SH
Once the diagnosis of glioblastoma (a deadly brain tumor) was confirmed, I became focused on how to get the best post-operative care to keep my wife as comfortable as possible. During this time, my emotions were more constrained than normal (they are typically very constrained) as I focused on fighting for her day-to-day.–KH
Suddenly, I was the sole financial and decision-maker for our family.–NL
Through the bond of committed relationships, we create a shared vision. Vince shares how the vision he and his wife had for life was shattered.
Vince’s Experience This Was My Wife
When my wife began showing signs of abnormal behavior, I never imagined the emotional and financial impact her care and treatment would have on me. For several months, we struggled to find a definitive diagnosis. As we struggled, her condition continued to decline. Finally, after three days of neuropsychological testing, an MRI, and a PET scan, she was diagnosed with frontotemporal dementia (FTD). This disease has several effects, and all are unpleasant.
Debby lost the ability to speak and eventually could not even communicate by nodding her head “yes” or “no.” FTD robs its victims of the ability to feel or display emotion. Debby’s facial expressions don’t change. But the symptom of severe agitation that accompanies FTD drove my decision to place her in a memory care facility. Four physicians advised me to find 
residential memory care for her as soon as possible. They explained that if she became severely agitated before being admitted to a facility, no place would take her. However, if the agitation arose after she was a resident, the facility would have to continue to care for her. [Debby on left. Disconnected to what was happening was part of her progressive FTD.]
I began a frantic search to find the right care facility for her. It was a frantic search because facilities with locked memory care units are scarce; they have few openings; long waiting lists; and are expensive. I felt fortunate because I had a personal connection with a nearby facility, and both Debby and I have long-term care insurance. My connections worked, and within two months, Debby was in a wonderful place just eight miles from home.
Of course, the people in charge did their due diligence and required financial statements, tax returns, verification of insurance, and other information to ensure I could afford to pay for Debby’s care. We passed the screening. It took weeks and massive amounts of patience to complete the insurance company’s required paperwork and get their approval. Finally, after jumping through a multitude of hoops, the nerve-wracking struggle seemed to be over, and Debby entered a facility that was better than I could have hoped for. I bought a bed for her room, curtains, furniture, a television, etc., and with help from some very good friends, moved her in. I took pictures of Debby’s nicely decorated room and sent them out to family and concerned friends to reassure them that Debby was well cared for.
However, I had made one very big mistake. I’d assumed the long-term health insurance would cover the complete cost of her care, and the facility would provide a bill and the insurance company would pay it. After all, she had nearly $400,000 of coverage. However, it doesn’t work that way. The actuaries and accountants — I suppose using formulas that consider life expectancy, age, and the amount of coverage available — calculate and provide only a portion of the monthly expenses for care and services. Debby’s insurance provides just over $6,800 a month. However, the cost of care and services in the place she was now living in turned out to be well over $9,000. The daily rate was $317, and the additional cost, which depended on the level of care required, would over time increase the monthly cost to well over $10,000.
Then the bill for the first seven weeks of care arrived, and I discovered that in addition to the $6,800 the LTC (long-term care) insurance provided, I had to produce an additional $8,000 (thank God for retirement saving plans). I was able to pay for those first seven weeks of care, but I could not afford the additional $3,000-4,000 each month that the LTC (long-term care) insurance didn’t cover. I was both devastated and embarrassed. How could I have so completely misunderstood the LTC insurance terms? My only explanation was that we’d purchased our policies about 17 years earlier, and I’d forgotten that critical detail.
For several months, perhaps more than a year, my life had been completely unsettled — doctors’ appointments, paperwork, phone call after phone call to the insurance company, trying to care for Debby on my own, the stress of finding somewhere to place her, repeatedly second-guessing myself, calculating the finances, and so much more. Now that Debby was receiving good care, I believed things were at last beginning to stabilize and calm down. Suddenly, that stability went up in smoke. I had to start all over again to find a facility I could afford that also had an opening. Among the handful of dementia care facilities in the state, the closest one was 45 miles away from home; anywhere else was 75 or more miles away. After a couple of weeks, the closest facility called and said they had an opening. I did the paperwork, financials, and insurance forms again. Then finally, sadly, we packed Debby up and moved her to the new place. Fortunately (I suppose), she didn’t appear to either recognize or be disturbed by the change.
This new facility was more affordable and if the first one was an “A”, this one is a “B+”— a wholly acceptable difference despite the distance from home. The daily fee at the new place is $270 and there is no up-charge for increasing levels of care. They are directly connected to hospice, and there is no additional charge for that service either. I still have to pay about $1,300 each month to cover what the LTC insurance doesn’t, but that’s an amount I can cover. Stability seems to have returned to my life. Most important, Debby is well cared for.
It’s difficult for me to describe the emotional turmoil I experienced throughout this long process. Everyone has had to deal with seemingly impenetrable bureaucracies at one time or another, but this time it was different for me. I wasn’t trying to get my phone bill straight or deal with a cable provider. This was my wife of nearly 35 years, the woman I loved. As she was falling apart, I seemed to be, too — the empty house, all the chores and daily tasks that we’d shared were now all on me. I had to deal with the trauma of losing Debby in every sense except for the fact that the body she once inhabited is still present. [Picture of Debby and Vince during a happy, healthy moments never knowing what was in store down the road.]
People close to me have often said they don’t know how I’ve managed all of it, and I only have one answer: “What else could I do?” I couldn’t run away or hand my problems to someone else. It might sound boastful, but I knew I had to put my head down and keep pushing and pushing. I couldn’t allow my emotional stress to interfere. I must say that I didn’t do, and couldn’t have done, this by myself. I had tremendous support from family and good friends and from the many people who loved and cared about a uniquely wonderful woman, my Debby.
Resources for When Your Partner Is Ill
This research study on the impact of living with a spouse with a chronic illness includes a list of more research that includes specific topics, such as multiple sclerosis, Parkinson’s, and more.[2]
“Your Spouse Has a Chronic Illness: Here Are Ways of Coping,” by Sheri Stritof.[3]
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard.[4]
An easy-to-read article from Psychology Today: “Turning Straw Into Gold: A Not-To-Do List For Caregivers of the Chronically Ill,” by Toni Bernhard, J.D.[5]
The Caregiving Wife’s Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself, by Diana B. Denholm[6]
Mental Illness and Your Marriage, by Jim Stout & Leah Stout[7]
Dancing with Elephants: Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain, by Jarem Sawatsky[8]
“Spousal Caregivers: When chronic illness crashes into your marriage,” by Todd Foley.[9]
“How to Keep Your Marriage Healthy When One of You Is in Pain,” by Suzanne Levy[10]
Let’s Talk Dementia: A Caregiver’s Guide, by Carol Howell[11]
How To Go On Living When Someone You Love Dies, by Therese A. Rando has a section on dealing with the loss of a spouse/partner, as well as other useful information.[12]
[1] Fricker, M. (2017). All in my head: How a hypochondriac beat brain cancer. Mustang, Oklahoma: Tate Pub & Enterprises, p. 77.
[2] Eriksson, E., Wejåker, M., Danhard, A. et al. “Living with a spouse with chronic illness – the challenge of balancing demands and resources.” BMC Public Health 19, 422 (2019). https://doi.org/10.1186/s12889-019-6800-7
[3] https://www.liveabout.com/cope-when-spouse-has-chronic-illness-2302978
[4] Bernhard, T., & Boorstein, S. (2010). How to Be Sick: A Buddhist-inspired guide for the chronically ill and their caregivers (1st ed.). Somerville, MA: Wisdom Publications.
[5] https://www.psychologytoday.com/us/blog/turning-straw-gold/201401/not-do-list-caregivers-the-chronically-ill
[6] Denholm, D. B. (2013). The caregiving wife’s handbook: Caring for your seriously ill husband, caring for yourself. Alameda, CA: Hunter House.
[7] Stout, Jim, & Leah Stout (2017). Mental Illness and Your Marriage. San Antonio, Texas: Shepherd Publishing
[8] Sawatsky, J. (2017). Dancing with elephants: Mindfulness training for those living with dementia, chronic illness, or an aging brain. Manitoba: Red Canoe Press.
[9] https://www.focusonthefamily.ca/content/spousal-caregivers-when-chronic-illness-crashes-into-your-marriage
[10] https://www.health.com/condition/pain/how-to-keep-your-marriage-healthy-when-one-of-you-is-in-pain
[11] Howell, C. L. (2015). Let’s talk dementia: A caregiver’s guide. Pittsburgh, PA: Hartline Literary Agency.
[12] Rando, T. A. (1991). How to go on living when someone you love dies. New York: Bantam Books.
Featured image courtesy of Ante Gudelj on Unsplash.
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