Making your food. Laying out your clothes. Sifting through your mail.
These intimate household tasks are being done for you by someone who you think is a stranger.
This is what Alzheimer’s can be like.
Alzheimer’s disease is a neurodegenerative brain disease that usually starts in late middle or old age. It progressively worsens, causing memory loss, impaired cognitive skills, disorientation, personality and mood change. It is the most common form of dementia, affecting as many as 5.1 million Americans.
This past June, my 87-year-old grandmother Daphne fell and broke her hip. But for our family, having her in hospital rehab for a few weeks, and then rehabbing at home, was not that simple.
Up until that point, she was the primary caretaker for my 94-year-old grandfather Gustave, who has Alzheimer’s disease. She was responsible for feeding him, bathing him and running the household for them both with assistance only a few hours twice a week from their caretaker Andreya, and from my mom and me when we could. Not to mention that they live alone in a second-story apartment, and Daphne has Alzheimer’s as well.
Luckily, my grandmother is a lot less cognitively impaired at this stage of the disease than my grandfather, but her accident served as a big wake-up call to us that things weren’t going to get any easier for them.
Talking to my mom on the phone, it became immediately clear how much the overnight care was going to cost while Daphne was away in the rehab hospital (because my grandfather can’t be left alone with his poor short term memory), and when she was reacclimatizing to the apartment. So I switched up my summer school schedule and went home to care-take.
My family’s situation is not uncommon.
“Every day for the next 19 years, 11,000 Americans are turning 65,” said Eric Hall, president and CEO of the Alzheimer’s Foundation of America (AFA). “One in eight [people] over the age of 65 [have Alzheimer’s], and 50 percent over the age of 85 [have it].”
Unlike most diseases, Alzheimer’s does not have a specific monetary “benefit” through Medicare, meaning there is not a defined amount of aid individuals can receive for treatment. The national average cost of care for an individual with Alzheimer’s is between $18,000–$30,000 a year.
Exacerbating the problem is the fact that, like my grandparents, fewer and fewer Americans have a retirement fund. According to the Employment Benefit Research Institute’s 2010 survey, 54 percent of Americans have less than $25,000 set aside for retirement, and 27 percent have less than $1,000 saved.
“Not only does [Alzheimer’s] devastate a family because a family is struggling to try to pay for the care, but additionally, the country experiences billions of dollars of lost revenue in employee absences because of caring for a loved one with Alzheimer’s,” Hall said. “So the disease impacts the family, it impacts the community and it impacts the nation as a whole.”
Piecing Together Care
My grandparents are spirited bohemians. Daphne was an actress with the Michael Chekhov Theater in England and ended up stuck in America during WWII. My grandfather was born a Brooklyn Jew, became involved in photography, enlisted, photographed Hiroshima, became a race car driver, went to Hollywood, changed his name and became a writer. They traveled the world, had famous friends, did exciting things and managed to stay in love to this day. What they forgot to do was set aside a retirement fund.
In the absence of funding for a private around-the-clock caregiver, families like my own have to take it upon themselves to scrape together a viable alternative. We manage by juggling benefits from a number of sources: a rent subsidy from Section 8 housing, doctor visits and medicine almost entirely paid for by Medicare and the Writers Guild insurance (the remainder is out of pocket). The U.S. Department of Veterans Affairs (VA) pays a pension, and Gustave’s Alzheimer’s medication, specialist caregiving and the rest of what they live on is Social Security and a small pension from the Writers Guild. All of this pieces together what Daphne fondly calls the “patchwork quilt of care.”
Before Daphne’s fall, they only needed 8-10 hours a week total from their caregiver and cleaning lady. This we could pay for out of the pensions. Now that Daphne is strong again, their care is about 14-18 hours a week, but at the height it was 24-7 for two and a half months.
During these months, my mom and I became caregivers and we hired more private caregivers to take on shifts — even their beloved cleaning lady took on the caregiving.
Elder care varies in cost depending on the level of care required. The average cost of a home health aide, which is a licensed practitioner trained in medical care, is $48,048 per year in California, according to the Genworth 2011 Cost of Care survey. In comparison, a private room in a nursing home costs an average of $91,250 annually. Additionally, the necessary health expenses can vary from 166 percent to 393 percent of the average annual income of America’s elderly, according to The New York Times.
Right now we can not afford to put both of them in assisted living, and if we wait too long we may not be able to. Many nursing homes will not take patients with Alzheimer’s because the transition to unfamiliar surroundings is too disorienting. My grandparents would be safer elsewhere, but we can not afford to move them both now.
But if they run completely out of money, they will go on Medical (California’s Medicaid), or VA benefits, which will pay for them to live in a skilled nursing facility. While this would keep them off the streets, it is more of a hospital setting, and my family has decided we do not want them to live in that atmosphere.
Medicare, which can pay for feeding tubes, abdominal/gall bladder surgery, joint replacements, and glycemic control for Type 2 diabetes (found in one in four people over 65), does not typically pay for long-term care in a nursing home for old people with dementia, or for home aides.
Aside from lacking benefits, Alzheimer’s also lacks a prominent spot in the public eye. AFA CEO and president Hall says that Alzheimer’s has a stigma among the American public.
“It’s because there’s no cure — it’s really that simple,” Hall said. “AIDS used to be a death sentence, but now that there’s a cocktail mixture of treatment, you can live for a very long time and still be diagnosed with AIDS. This disease doesn’t have that, and people are terrified because of that. Here in America you get sick, you get a prescription, you get better, and that doesn’t work with this.”
Although I couldn’t help Gustave with his Alzheimer’s, getting Daphne back to full mobility on her hip and taking care of them until then was certainly an option. My caregiving responsibilities, though they varied, included sleeping over to help them in the night, fixing meals, tidying the house, taking notes on their condition, administering medication, cleaning the commode, helping Daphne dress and bathe, and hiding Gustave’s dirty clothes when he got out of the shower so he wouldn’t put them on again.
When Gustave walked into the bedroom and saw new clothes neatly laid out, he accepted that they were for him. One of the things I am most thankful for is Gustave’s humor.
“He is atypical in that he kept his humor,” said their caregiver, Andreya von Waldenfels-Marks. “So he lightens up everything with very witty remarks. That is pretty rare.”
For many suffering from the disease, Alzheimer’s can change their moods and personalities in difficult ways.
For example, I walked into the bedroom to tell Gustave it was time for lunch. “Here is your stick,” I said, offering him his cane. “Why?” he said, looking up at me with momentarily wide, uncertain eyes. “Because it’s helpful,” I said. “Well, I use it because it looks important,” he said, and we laugh. It’s moments like this when I feel close to him. I know he doesn’t know who I am, or what’s going on, or why I am asking him to get up — but I can see that this doesn’t matter, because he trusts me. He trusts me because he can feel that I love him.
“If there’s one disease that really needs champions right now, it’s Alzheimer’s disease. And it needs to come from the youth. It really does,” said Hall, president and CEO of Alzheimer’s Foundation of America. “The caregivers who are caring for people with this disease simply don’t have the time. They are engaged 24-7, caring for their loved one with the disease. It’s really left up to the rest of us who understand it and have experienced it to raise a voice and unify our intentions and try to change legislation and provide more resources.”
“College-age students are among the nation’s 42 million adults aged 18 and older who are caring for adults with limitations in daily activities, including people with Alzheimer’s disease,” according to an AARP survey.
Results of an AFA survey found that 59 percent of those adult caregivers aged 18 to 21 are very involved or somewhat involved in caring for a person with Alzheimer’s disease. Among them, about one-third assist with doctors’ appointments and about two-thirds entertain their loved ones.”
Recently the AFA have been working on providing a venue for college-aged individuals to come together around Alzheimer’s. “On Campus,” an off-shoot of AFA Teen (which provides popular resources, such as free counseling, comprehensive information and ways to get organized) aims to start club branches at colleges all over the country. The clubs would provide students with resources and information while also organizing events, providing volunteer opportunities and raising awareness.
Elizabeth Owens, On Campus advisory board member and founder of her campus’s chapter at the University of South Carolina, seeks to raise awareness and create a caretakers’ community for those afflicted with Alzheimer’s. Although University of South Carolina’s On Campus chapter is in its infancy, the club already has 30 members, with a lot of support from Owens’ sorority Phi Mu and the biomedical sciences department, and a good deal of campus, local and national press.
Owens has already been contacted by numerous students at other colleges all over the United States asking how they can start their own AFA On Campus chapters. “It’s really exciting because that’s kind of the goal of it, to spread it throughout the whole country,” Owens said.
One such student who is trying to start another On Campus branch is Megan Parsons, a first-year Harvard student and AFA On Campus advisory board member. While some members are personally connected with the disease, others — like Parsons — are more interested in the legal, philanthropic or advocacy elements the disease presents.
“Advancements in medical technology are going to increase the average life expectancy, and because of this, neurodegenerative diseases like Alzheimer’s are going to become more prominent as time goes on,” Parsons said. “But we also have incredible efforts on the parts of individuals and policy makers and researchers that are really propelling scientific interest forward. Ultimately I believe we are going to be making great strides with Alzheimer’s disease in the coming years.”
For Owens, the connection is personal. Her grandfather lived about five minutes away, so while she was in high school, Owens was able to help out around his house, drive to doctor’s appointments, and assist in taking him down the stairs, which he could no longer do.
While she was happy to help out, she was troubled by the lack of options.
“It seemed totally unfair that that was the dilemma we were put in and we had to, not that we had to keep him at home, but that it was safer for him to be somewhere else and we didn’t have that option,” Owens said. “It all came down to finances and it just seemed totally outrageous that that’s how it had to happen.”
“I felt a little guilty [because] when I moved away was when he passed away,” Owens said. “[On Campus] kind of helped me focus my grief about it.”
Feelings of guilt are very common among college students who leave their loved ones with Alzheimer’s and caregiving families to attend college. I myself had a profound sense of guilt regarding my grandparents. When I was at city college, I would go over there for a couple hours a week and visit with them. But every week I was too busy to go, every time I came back from UCSC and only saw them once, it made me feel awful.
Staying with them all summer, I felt I was doing my part, but as fall loomed, guilt started to set in again. But every time I mentioned school to Daphne, her face lit up. She loves that I am going to college, something she never got to do.
When I call them every week she is happy to hear about my classes, the newspaper, and how I promise I am coming home for Thanksgiving. It helps assuage my guilt.
But what I think is the most valuable part of caregiving is the things you learn.
“Old people used to get on my nerves, I don’t know how to say it in a better way,” said University of South Carolina On Campus founder Owens. “I had an attitude that they can be aggravating. When I had more experience with helping him out, seeing that he suffered from a disease, that he wasn’t just being an aggravating elderly man, gave me more sympathy for the situation and I was more willing to go over there and spend time with him, talk to him, even though he was telling me the same thing over and over again.”
You learn patience.
Especially while you have circular conversations or answer the same question for the fifth time in 30 minutes. At times it can be frustrating. I’ll admit that when Gustave and I used to have the circular “what are you studying/planning on doing with your life” conversation, I would give him different answers every time to see his reactions and keep things fresh. It wasn’t really lying — I wanted to be a lot of things.
It teaches you compassion.
Every time I had to reexplain to Gustave that Daphne was in the hospital rehab for her hip, I made sure to assure him she was recovering and tell him how helpful he had been when she fell and how much she loved him and missed him. It was important to be tender with him about each one of these facts because if not properly explained, he sometimes thought that she had left him or he had not done the right thing or that she was very ill. She is his life — for me to let him think those things for a moment would have been the most careless act.
My grandparents’ oldest caretaker, Andreya von Waldenfels-Marks, said the most important part of caregiving is “having an open, loving heart.”
“Having very little ego — [ego] just gets in the way,” von Waldenfels-Marks said. “You have to selflessly serve.”
With Alzheimer’s, letting go of the ego can be tough. I had been caregiving for my grandfather for about a week and a half when I realized while looking through a photo album with him that he not only did not know my name, but also didn’t know I was ever born. Here I was caregiving for someone I loved, and he had no idea who I was. But the value isn’t in the name recognition. It is in the trust and love they send back to you.
It teaches you about beauty. I would shower my grandmother, a great beauty. I would massage her feet and rinse her back. You learn that as we age, we don’t become less beautiful, but rather more precious. Our bodies become a testament to the tremendous lives we have led.
You learn about how to really and selflessly love. Thanks is what I have learned. While I caretook for my grandparents, I had this piece in mind. It was a way for me to try to mentally structure the overwhelming experience I was having.
I can talk now about altruistic life lessons learned, but the truth is that while it’s happening, it’s really difficult. It’s sad to see people you love say they feel like they have “overstayed their welcome in the world.” It’s not fun to clean up bodily fluids. It’s not cathartic to “sleep” with the lights on and a baby monitor on full blast so you can get up 6-8 times a night to adjust pillows and help others to the toilet.
So when I thought about this article I thought about how I would write what I wish I had, a guide to make things less difficult. I would talk to experts, I would reflect, I would solve.
But right now, love is the only possible treatment. Every source I interviewed said it, and it’s taken me until now to accept it.
It’s doing the little things.