When caregiving strains family relationships

Becoming a Caregiver

The realization that my Mom needed more care than my elderly Aunt Mary could provide hit me hard. As described in my first blog post, a visit to them in Florida confirmed that Mom’s changing behavior – forgetful, sometimes erratic – was more than Aunt Mary could handle. Not only that, my older brother who lived nearby refused to take any responsibility for her. He told me that he was still working and had a family to take care so could not afford to take on that responsibility.  They insisted that I, the only daughter, should become the caregiver since I did not have a family and lived alone, and none of us wanted to put Mom in a nursing home.

Turning my life upside-down

I lived 3,000 miles away in California and had to move to Florida to become a full-time caregiver for my mother. My life before this included a full-time job that required occasional travel. In order accommodate this new caregiver role, I would have to turn my life upside down. First, I had to find a new place to live – my one-bedroom apartment did not have enough space for both of us. I found a rental house in nearby San Leandro and moved my belongings there over several weeks while still working during the day.

Then I needed to find a safe place for Mom to be while I worked. Somewhere she could socialize and be involved in interesting activities in a pleasant environment. Elder care was a whole new world for me and I hardly knew where to begin. I asked friends and searched the internet for resources in my area, and found a paratransit service and three senior centers. While visiting one of them at Eastmont Mall, I happened to see a sign, “Center for Elders’ Independence” (CEI), and walked in to see what it was. The friendly receptionist connected me with an intake worker who explained the Program of All-inclusive Care for the Elderly (PACE) health plan. He was so kind and helpful, but it sounded almost too good to be true – health care plus social services, activities, nutrition, and transportation all in one place.

Making a new life with Mom

Armed with a batch of resources, I flew back to Florida and brought Mom to our new home and our new life together. After we toured the CEI Eastmont Center and the intake person visited our home, I enrolled Mom in CEI and also signed her up for two senior centers. She attended CEI on Mondays and Wednesdays, a senior center in Castro Valley on Tuesdays and Thursdays, and an Oakland senior center on Fridays. This patchwork quilt of services worked fairly well for several years, as long as the paratransit bus showed up on time (more on that later).

We developed a routine: I got her up in the morning, made breakfast, and helped her dress to get ready for the CEI van or the paratransit bus. I put a sign on the door that said “STOP! Do you have your house keys, money for the bus, glasses, and purse?” She enjoyed the bingo, games, and lunch at the three day centers, and made some new friends. When I had to take business trips several times a year, the CEI social worker helped me arrange for Mom to stay at a board & care home. But on days when Mom didn’t feel well, I had to use my vacation days to stay home with her.

 

The Ups and downs of Caregiving

After four years of full-time caregiving with no breaks, we visited Aunt Mary for Christmas. I’d arranged and paid for two weeks at the senior center in Ocala, Florida, and set up transportation. I asked my brother if he would take Mom for an additional week after the visit, to give me some respite. He said no. So I asked him to contribute some money to help with her care. He said he would send something “when he could,” but never did. I even had to remind him to call her each week. To say I was angry and hurt would be putting it mildly! I truly felt alone with my own life slipping away more each day.

In the fifth year, I fractured my foot in two places, had surgery and wore a “boot” for seven months. Of course, this made it harder to help Mom, so CEI began sending home care aides to assist her with bathing and dressing. After that stressful time, I told my brother that I wanted – needed – a vacation and asked him a year in advance to come to California and stay with her so I could go away for a few weeks. He said he couldn’t afford it, but I told him he had a year to save money for plane tickets for him and his wife, and that I would cover all their expenses while they stayed at my house. He reluctantly agreed and I reminded him about our agreement each time we spoke on the phone.

Biggest disappointment of my life

Then, two months before my planned trip, he said he was not coming. No reason as to why, he just wasn’t coming. He said it wasn’t his problem and I was “the one who decided to go on vacation!”  I just fell apart. How could he do this to me? I really felt, “I don’t have a brother anymore.” I was a physical and mental wreck. Whenever we talked on the phone, I got so angry and resentful at my brother that I stopped calling and talking to him. He started calling Mom more often without reminding, but never sent money or helped with her care.

My brother’s refusal to share the caregiving for our mother was one of the biggest disappointments of my life and left me feeling so alone. I’ve learned that elder care often strains family relations and the burdens often fall disproportionately on women. According to the Family Caregiver Alliance, a wonderful organization based in San Francisco, upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. I also learned that when there is no family help with caregiving, you have to find help and relief where you can. A friend offered to stay with Mom for a few hours occasionally so I could go to a movie, which I appreciated. I treasured the moments here and there when I could meet a friend for lunch, or when Mom took a nap and I could relax and read a book.

Navigating the unfamiliar path

Around this time, we started having problems with the reliability of the paratransit service taking her to and from the senior centers. The bus would fail to pick her up from the center, leaving her sitting outside waiting until someone would call me. One day, a total stranger took pity on her and brought her home! I went into sheer panic when I would arrive home and she wasn’t there.  I told her CEI social worker about this distressing situation and the team increased Mom’s days at CEI from two to five. This simplified her schedule and solved the transportation problem, because the CEI vans and drivers always showed up and made sure Mom got to and from CEI and all her outside medical appointments, too.

During the early years Mom lived with me, she was still able to get around pretty well. Her main problems were cognitive – memory loss, unpredictable behavior, and subtle personality changes. Keeping her safe and contentedly occupied was an emotional strain, but she could still relate to me as her daughter and there were happy times along with the stress. We played cards, went to the movies on a regular basis, shopped, colored in our coloring books, went out to dinner often and reminisced about family stories. It’s probably just as well that I couldn’t see what the future would hold as her health and mobility started to decline. Our journey together would get rockier as we made our way along an unfamiliar path.

To be continued…