Deb Wells, Director of Operations, Alzheimer's Association
The journey of living with a spouse with a dementia diagnosis began for me when I was 44. My husband (58 at the time) had been having difficulties with problem solving for a few years. I attributed this to distraction and depression, as he was the nearest caregiver for his parents who lived in Colorado Springs, about an hour drive from our home in Centennial.
As the months and years passed by, I realized that this might be something else. The real awakening came when he came home from his job as a high school teacher with a corrective action letter regarding his performance, citing eleven areas where they needed to see improvement. This was a shock – he was always so hardworking and diligent about his job. Lately though, his weekends were more and more taken up with correcting papers and doing lesson plans. He had usually spent the morning on Saturday doing remaining school tasks; now he was spending all weekend. It seemed to me that he was re-grading and re-planning again and again.
The corrective action letter compelled me to see our primary care physician for what would turn out to be a multi-step process to receive a diagnosis. I had heard the term “diagnosis of exclusion” (eliminating all the possible causes that are easily diagnosed, such as vitamin B12 deficiency, brain tumor, thyroid irregularities) – now we were going through the rigors of a physical, a CT scan, neurological exam, psychologist visits for several weeks, and finally a neuropsychological exam. Thankfully, I had full coverage health insurance through my employer with John as my dependent and every procedure, exam, and test was covered.
Finally the answer. Yes, he was depressed, but not to the point that his cognition would be compromised to the extent that it was. The neuropsych exam was the final, most telling step. The words “early memory loss” seemed gentle as they were delivered as the diagnosis, but they were quickly followed by “early onset Alzheimer’s disease.” The following weeks we were both grieving, at a loss to envision our future.
The day following the diagnosis I was in the offices of the Alzheimer’s Association seeking information, and quickly shared what I learned about the disease and the many services the Association offers with our direct family members. We began attending a support group for people at an early stage of the disease, and found a lot in common with other group members. Although it’s common for the vast majority of caregivers not to reach out for assistance or seek out resources, I realized that we were all problem solvers trying to make the best out of a devastating situation. These friendships with the couples we met remain with me today.
Something else that my peers in support groups had in common was that we were young and so were some of the people with the diagnosis. While some of the rules and regulations have changed since then, there were a lot of barriers to get social security disability for younger folks with a dementia diagnosis. Similarly, there are challenges to helping working spouses supplement their income when the time comes for them to leave a full-time job and become a caregiver to their loved one.
Medications were also part of the “solution” (there really is none, after all) and appeared to help John more than some of the other folks we knew through the support group. He seemed to regain some of his initiative and energy, so our lives did get on track. John was now on disability retirement, and I continued working on the other side of town in a job that I loved, working as a mid-level executive in the grocery distribution industry. This went on for several years with gradual declines in John’s abilities. After finding a brochure in the waiting area of the offices for the University of Colorado, we brought in help for John to get out and about when his ability to drive was determined to be impaired. This was actually a good move – introducing help in the household early on makes it seem not like such a big step later when more help is needed.
Seven years after the initial diagnosis John woke up screaming in the middle of the night in terrible pain and asked to be taken to the emergency room. This set off a round of examinations and tests which determined that John had a bad hip. We chose to treat it initially with specially x-ray guided injections to address the pain. The hospitalization itself led to delirium, and a four-week stay in rehab. Little did I know this was a preview of what was to come. John was a bit of an anomaly at this point. He was a bit younger than most folks encountering this type of illness. At the time of this hospitalization he was 65, but on my insurance. I had to keep reminding providers that insurance from my employer was also involved.
Fast forward one year. John still had pain and we decided that surgery was the only option to give him some relief. Hearing that anesthesia is contraindicated for those with dementia, we pursued a different type of sedation. John was given the same type of meds as one would have prior to a colonoscopy. He came through the surgery with no apparent bad effects. But, as the days progressed he lost more and more consciousness and slipped into a deep delirium. Despite his tentative physical situation, he was discharged after only two days in the hospital and taken to a memory care rehab facility. Less than 24 hours later we were back at the hospital, this time with a fever spike of over 100 degrees. He returned to the rehab the following day. When he was left alone, perhaps because we stressed the importance of him getting up to get exercise, he tried to get up and walk and had a bad fall.
In all, he spent ten weeks in rehab. During this time I learned a new level of caregiving – of being on site and fighting for the care he deserved. Early on during his stay things seemed dire. He was often not conscious for most of the day for several days. This entailed understanding Medicare restrictions and requirements, so we decided hospice was a good option – to give him more care than he was currently receiving. To give John more stimulation throughout the day, I hired caregivers from local agencies with whom I’d become acquainted from earlier stints with us to stay with him. When it became apparent that they couldn’t advocate for his needs as well as a family member would, I left my job and began spending several hours a day with him. He later said that my being there gave him hope, and that it made a big difference.
He began to regain consciousness and strength. One of the best experiences of my life was walking into the breakfast room to see John feeding himself oatmeal. So, now that he was on the mend, I stressed that physical therapy should be on his schedule. A rude awakening came when I learned it wouldn’t be covered by insurance since he was on hospice. We quickly reversed the hospice decision and John was able to recover enough to be brought home. We spent 3 ½ more wonderful years together – our bonus years.
What would I tell people facing the same challenges now? The most important thing is researching resources in your area. Being out in a world full of new expectations was demanding for both of us, but we both gained from our new experiences as well. I was fortunate to get quite involved with the Alzheimer’s Association early on in this journey, so they were always a point of contact for determining the best resources. Also, educating yourself on alternatives, such as cognitive stimulation programs, which I learned about at the Alzheimer’s Association’s Education Conference.
The experience in the rehabilitation center and with memory care gave me so much to grasp onto as I entered the world of being the sole long-term caregiver for a wheelchair-bound loved one with dementia. Watching caregivers who were incredibly skilled and entrusted with John’s care yet very underpaid taught me so much. I learned physical techniques for helping do the transfers. I learned about conflicting demands, and how to prioritize to put John first. I learned about patience and truly caring about others. While most people move on quickly to the next chapter of their life after something like this, I now have a new career in the aging field working for the Alzheimer’s Association to increase the number of people we serve through our programs.
Unfortunately, Alzheimer’s and other forms of dementia are lingering diseases that can progress slowly beyond the point the person is able to live independently. As a result, holistic solutions to ensuring family members can care for their loved ones, such as help supplementing their income when the time comes for them to leave a full-time job and become a long-term caregiver, are key. As mentioned above, I left my “career job” as a mid-level executive in the grocery distribution industry. While I was only not working for a period of eleven months, and I’ve been working full time most of the time since then, I am still only earning a fraction of my former salary. Medical coverage was my initial reason for returning to work, as I wasn’t medicare eligible and wasn’t able to fund my own health insurance. I chose a position that was super close to home and provided full medical benefits for working as little as 20 hour per week. This job was not in my previous field, or level; it was as a cheesemonger at a grocery store. I ended up swapping my salary to pay a friend to stay with John — but at least I had health insurance.
By investing in caregivers and community resources, we could save great sums of Medicaid expenses and family members could provide better care for a longer period of time to our loved ones. The time is now to act boldly by investing in each other at all ages in order to ensure that our communities are places for all of us to flourish.