Dad, Husband, Community Volunteer, Alzheimer's Activist, & Caregiver
Age: Early 60s; cared for Loved One in his 50s.
Care Role: Primary caregiver. Lived with Loved One.
Age: Passed away in mid-50s.
Diagnosis: Early Onset Alzheimer's
Progression: Lived at home almost until the end. Passed away 5 years post-diagnosis.
When she was in her late 40s, she noticed a speech problem. I did not. By that spring, she felt we needed an evaluation. A neurologist said my wife was likely imagining a problem. A year later, we went back to see the neurologist. Her speech had deteriorated and friends and strangers noticed. The doctor insisted nothing was wrong.
Getting a Diagnosis
We tried a different neurologist . The new doctor looked at the earlier MRI, he took vitals, talked to her, had her repeat words and phrases and draw. He told us to schedule a neuropsychology test and then wrote down “Primary Progressive Aphasia.”
We had two Neuropsychology testing sessions, a PET/CT scan, and EEG and a spinal tap. The neuropsychology tests indicated deviation from baseline norms . The doctor asked a series of questions, “name the last 7 Presidents of the US in reverse order” and “count backwards by 7, starting at 93” and “how many kids do you have.” She was asked to draw. She did the tests a second time with a different doctor.
Two months after the spinal tap, she was told all signs point to Alzheimer’s but we need to follow up with more doctors. Her spinal tap was normal but her protein markers from another test suggested Alzheimer’s, as did the Petscan. She was given a prescription for Aricept.
I couldn't function while we waited for a diagnosis. It took 9 months from our first appointment with the second neurologist until we had a diagnosis. Then the doctor called and said he supported an atypical Alzheimer’s diagnosis; he considered it mild.
My wife didn't slow down. She flew to visit her sister’s and ran a half marathon.
Getting a Diagnosis
We didn't want to tell our school-aged children till after we knew for sure, so we decided to wait to tell friends. When we told people, they put together a website to organize support for us. Mostly transportation help. Seventy five people supported us, which was critical since I was still working.
I assumed my wife and I would tell the kids together. After church one day, she told the kids while they were waiting for me to come out. I wish I’d known exactly what she said. I struggled a lot with how to support the kids. After we told them, I wish I talked to them about it more regularly. It took awhile for us to talk about how they were processing it.
Her first thought at diagnosis was “ what about the kids?” We decided to have them be kids. They were not going to be caregivers. I have no regrets on that. My daughter was angry about not including her more; years later she said it was the right thing to do. I still worry about my son, who was ten when my wife was diagnosed.
Over time, I questioned how to handle my wife’s health with my children. One day, two plus years after my wife’s diagnosis, my son brought it up for the first time. He asked me “will mom ever get better?” and then a few days later he commented “I never knew how important communication was until Mom had trouble speaking.” Both conversations were when we were driving alone, making me think I needed to carve out more time for 1:1 moments between us.
Legal and Financial Planning
We updated our will right after diagnosis. I felt fortunate that we made a lot of financial and health decisions right after diagnosis. Everyone says do it early and they are right. I had Power of Attorney. I didn't have to make decisions about feeding tubes, etc I knew. When she was in her final days, those types of decisions were clear. I regret we didn't make a final decision on what she wanted me to do once she passed away.
We had done financial planning in our 40s. We got long term care insurance four years before she was diagnosed. So we never had any financial issues. The insurance covered the day center and more than 95% of the long term care facility.
Two half years in, I started preparing for alternate care in and out of home. I was told to start both before needed. Once her paid career ended, we applied to Social Security Disability and activated our long term care insurance,
Over 75 friends volunteered to help drive my wife and occupy her time. Every Sunday, I would write out the details of who was picking her up and when or if someone was bringing dinner by. Meals were a huge help,
My wife had taught a gym and we were lucky her employer let her keep teaching classes, even as her speech declined. Her friends signed up to help drive her to and from her classes.
In early appointments, the doctor told us she could drive -- he didn't see changes in memory or balance. Eventually he referred us for a driving evaluation. My wife was willing to go after the doctor stressed what would happen if she were in an accident, a possible suit, etc. She had given up driving at night and outside our town. The driving evaluation has two parts -- an in office reaction test and an on road driving test. She was terrible at her reactions on a model gas and brake pedal. The following tests were a mess. She cried. She wanted to quit. She took more than two hours on a test that was supposed to take 90 minutes. She missed the road test. She failed the reaction time and other parts of the test. They recommended that her driving should be “restricted.” Fortunately, She declared “I am done driving.” We were lucky that we addressed driving early. She could understand the danger. I found it was better to address these big things a little too early than a little too late.
Turned out, she didn't miss driving. She just didn't want to be homebound. Her friends picked her up. She got out of the house every day, which kept her from being bored and depressed. During the rides, she was social. She loved the variety of people who drove her. And, she got to go to the gym, the market, the nail salon.
When she stopped teaching we grew more concerned about her being alone and looked for options to fill her time. I decided adult day care was the best option. My wife had helped senior exercise -- even leading a chair exercise class at our church, so we hoped that would be a good transition to the adult center. I was hoping to find one with transportation and that was close to our home, so she could easily go while I was at work.
We decided to start with one or two days a week and add days, as she felt comfortable. I felt major relief knowing she was safe and supervised, rather than alone. We increased the number of days and then added a home health care within a few months. After her seizure, when the doctor told us she could not be alone, I had to figure out additional care coverage to be with her the rest of her time.
She resisted going to daycare. I used vacation and FMLA to get her set up with home health care. Over the next six weeks or so, she became more comfortable with the Daycare. At first she was miserable there. Everyone was twenty or thirty years older than her. But the center engaged her. They made her feel like an employee. She loved going there and eventually went from eight till three and then was home from three to five, when someone would visit. When eventually we had a home nurse come, she hated it and blamed me.
When we began Daycare, we had endless red tape. Almost five months after first making a claim for Long Term Disability insurance, our claim was finally approved. Her daycare and companion costs were covered as a result. We applied for Social Security Disability. We needed an independent medical evaluation.
There is a list of urgent things that are imminent -- you don't know when they are happening but they are going to happen: some sort of care during the day (health aide, day care, companion), long term care. In these cases, the decision happened overnight for me. She didn't need it yesterday but she absolutely needed it tomorrow. There was a couple week wait when we needed Day Care. Six months at another place. In both cases, I had to drop everything and find care.
Her progress from diagnosis to death was less than five years. She was steady, steady and then she went from stage four to death in a month. Her speech was the most prominent challenge. We did not have many of the emotional and mood challenges others face.
Six months after diagnosis:
Her writing got worse. She relied on me to finish her thoughts . Memory issues became pronounced. She lost her phone, ipod, and camera. Her purse was found at the grocery store. I had a lot of grief.
At the appointment, the doctor asked a series of questions. The doctor asked “can you spell ‘world’?” She could not. “Can you say ‘no ifs, ands or buts’?” She tried, but could not. “Do you know what day today is?” She did. She knew the month and date. When asked the year she said “two-one-one-twelve” not “two thousand and twelve.” He asked her to repeat three worlds. A minute later she could only say one.
Increasingly, my wife had myoclonus twitches that caused her to involuntarily drop anything she was holding. Soon nearly every word was hard for for her to say. Her walking slowed, she had trouble keeping up and she was more cautious with each step and stair. She was afraid to ride an escalator without holding my hand.
Life became charades. She would gesture, point. She started sleeping more -- ten hours a night and most afternoons. But she seemed to sidestep depression.
One year after diagnosis:
I found myself wanting to talk to the doctor behind my wife’s back. The appointments made her anxious. I sent the doctor a note with my thoughts and observations from family and friends.
I noted that her speech had deteriorated. We had laminated cards so she could point to things but she rarely used them. She was quiet. She gave up trying to talk. Her twitching was more frequent and severe. She spilled coffee on her lap. She dropped items at the grocery store. She got out of the house every day for a few hours and taught classes three days a week. She was alone 3-5 hours/day . She napped, watched TV, or did laundry. She fell on the stairs. She fixed herself breakfast and lunch using a microwave and a Keurig coffee maker. She managed her own medication. She needed help with makeup or jewelry. We had an IPad to help with speech but she couldn't turn it on or off. Friends reported at their weekly lunches she ate a salad with her fingers. While positive, she was lonely and often felt out of the loop.
The doctor said while her language had substantially deteriorated, her Alzheimer’s was mild. He didn't see a need to change medication or the necessity for in-home care.
The doctor said it was mild. But the previous two years had been really hard for me and my family. My wife wasn’t who she had been. That summer, my wife ran her last 5k race, collapsing at the end.
Two years after diagnosis:
My wife saw an orthopedic doctor for a steroid injection to manage spinal stenosis and hip arthritis.
She got progressively worse at the neurologists standard questions. She couldn't say “ “no ifs, ands or buts”. She didn’t know what day of the week it was or maybe she just couldn't say “Thursday.” She seemed to be tapping the days of the week. She couldn't write them either. When asked what year, she wrote “Monday.” He told told her to” take this piece of paper in her right hand, fold it, and give it to your husband.” She took the paper with her left hand and gave it to me without folding. I wanted to cry. She seemed only marginally frustrated. She had hated these tests. Now she didn't seem to notice she was failing them. Her pitch and volume were changing. Processing information had become more difficult.
Two years after diagnosis, she had a major seizure . She had been off Klonopin, a medicine she used to manage myoclonus twitches, for a week, after she ran out and I had difficulty refiling the prescription. That week, her twitches got more frequent and severe, causing her to fall and spill. At the ER she had a longer and bigger seizure. The two seizures were major spikes in a steady decline. She experienced speech and cognition losses that she never regained. She grew more fatigued. She was in the hospital for three days and they concluded the Klonopin might have been necessary to manage a predisposition to seizures. It was ten days before she had adequate balance to return to Daycare.
After the seizures, The doctor felt that she could no longer be alone. If there were an emergency she couldn't call the fire department or make a quick decision.
One and half years after her diagnosis we were dealing with her no longer driving. Two and half years after her diagnosis and two months after the 5k, she was done running and she had come to the end of her career as a fitness instructor. Her employer, while extremely supportive, said they couldn't keep her on. I broke the news to her and she was surprised and heartbroken. She cried like I’d never seen her cry like this before.
Two and a half years after diagnosis:
The doctor noticed her walk was asymmetrical and no longer fluid.. He noticed stiffness in her muscles. He believed she had Lewy Body Dementia in addition to Alzheimer's. All these diagnoses felt like hypotheses.
Three years after diagnosis:
Well over four years into the journey and three years after diagnosis, speech was still her dominant challenge. She seemed to know what she wanted to say, but couldn't communicate. We couldn't get yes/nos. Her vision became impaired. Shadows appeared three dimensional or like holes. Her peripheral vision narrowed. We’d have to use a transport chair to help her around. Her posture changed. She could not stand up straight. Her chin was against her chest. I would feed her. She needed assistance with silverware but could eat a sandwich or fruit on her own. She needed help to dress, shower, or brush her teeth.
She couldn't occupy her own time. She could not sit or watch TV. I started playing music and she started dancing constantly. I danced -- however badly -- with her.
Then things changed. During her illness, I rarely saw Marcia cry or get angry. But four years in -- just over three years since diagnosis, just months before she died, she cried daily. Hysterically. She had tantrums. She’d tried to tell me why but couldn't get the words out. She’s hit me. I don't know what bothered her.
Then 10 days changed my life. Crying became constant. She stopped eating and drinking. She went from regular sleep to not sleeping at all. She went from wanting to hug me to rage at the sight of me. She rubbed her thighs constantly. She wouldn't let me touch her. She had a few nights of constant movement. She wandered around the house knocking things over and pulling things off the wall. I hid photos, knives, knobs from the stove. She finally fell asleep at 4AM. The following night the same thing happened. She threw things. She had an outburst at my son. In the morning I called 911.
The hospital checked for urinary tract infections, dehydration, infections/bleeding of the brain. MRI’s, CT scans, EEG’s, blood work. They saw deterioration of the brain. Nothing treatable. After five days, she was released to a rehab and nursing facility. She was in a wheelchair and couldn't eat solid foods or drink. She smiled at friends but didn't speak. Less than three weeks after the rapid changes started, shea was placed on hospice. She had lost twenty pounds in three months. She pulled her IVs out. She wouldn't eat. I could have had a pic line surgically implanted to deliver nutrition and hydration but she was suffering. That’s where power of attorney came in. I wouldn't force feed her. She stopped acknowledging me or her friends. She looked like she was in constant pain. She no longer walked. She died a few days later. She was not yet 55.
A few months after she died, we received an official Alzheimer’s confirmation after a study was done of her brain.
She went to bed early. And slept. I got up early and worked out in the basement. I was showered before she woke up. At night after she went to sleep I always watched Friends or so I ended the day with a smile. And I played spring summer soccer while someone came and watched TV with her.
I wonder if it’s possible for anyone to actually feel like they are good at caregiving. The failures just stand out too much. I suppose I feel like a referee in any sport. When I did things well, it was not noticeable. But when you don’t do something well, everyone sees.
There is no blueprint for how the progression will occur. I’ve heard stories about how Alzheimer’s affects memory, leads to wandering. My wife couldn't talk. Some of the memory issues never came into play. I’m not aware of anyone who fits neatly into each stage and who moves predictably from one stage to the next. In her case, she would have been described as a severe stage within respect to communication early on, but memory and most other areas were mild.
All Alzheimers is awful. All Alzheimer’s is lonely. Early Onset has unique struggles. You read stories and they say “my wife was 74 when she started showing signs.” That’s not helpful when you are working and have young kids at home.