Compassionate Caregivers: Experienced Voices Heard

[Article by Christine Arata]

Compassionate Caregivers: Experienced Voices Heard

“There is time for work. And there is time for love. That leaves no other time.” Coco Chanel

When I was 5 years old, my mom went to work and I became a latch key kid. I remember lying on my mother’s bed as she went through her closet to find clothes for her day. I also remember times waking up and she would be gone, to work. Little did I know later in life she would need me and I would get that time with her back. My mom was diagnosed with Alzheimer’s in 2006. I was working full-time. I was also living with her at the time. Her needs gradually increased and I decided it best to quit my job in 2007 to work part-time. It is now 2011 and I have worked on and off as my mother has progressed in the disease. Aside from her need to work in my early years, my mom has always been a great support to me. I could always count on her. In her weakness, we became even closer. I am thankful for these years I am spending with her and I am happy I can keep her home with me. She earned her home and garden. Luckily, my brother and sister agreed. It’s not all easy; I don’t want to make a fable out of caregiving. It does take its toll, but it’s the reason you do it that can carry you through it. Instead of statistics to explain the issue, I have compiled stories from a few caregivers in the San Francisco Bay Area and one from Arizona.

Ashlee found herself caring for her grandmother while raising her daughter of only a few months. Her grandmother enjoyed having the young companionship that often brought smiles. She too found it was quality time with her grandmother and that she learned valuable lessons from her. Her family was close and her grandmother had done a lot for them all, and despite having a difficult life, she remained positive and was a strong woman. Ashlee added, “We felt our time taking care of her was in return for the wonderful things she had done for all of us, we had a family support system. This led me to my strength and patience.” Ashlee admits she gave up some freedom and a normal social life being a live-in caregiver. She found this challenging at first, but found her balance over time. She states, “We need a support system, when we receive it helps our positivity.” “…People forget to give back to their community and lend a hand. Caregivers are making a difference and leading to a rewarding life by learning something valuable from our patients.”

Christine Arata may be reached at christine.arata@me.com.

Rhonda found herself caring for her mother with Alzheimer’s disease, after her other 8 siblings designated her the best choice. She was also designated by her mother in her Living Trust to make her health and finance decisions when this time had come. She bathes and dresses her, prepares meals for her, transports her to appointments and handles her finances. Caring for her mother has helped her to be a more understanding, patient and appreciative person. Her wish is “that we must move toward dealing with society issues in a more collective fashion as opposed to the current individualistic way it’s dealt with now. Her advice to others is, “Don’t feel guilty about what you do or cannot do. My friend says ‘Do your best, and pray for the rest’.”

Claire’s mom has now passed, but she cared for her for nearly 12 years. Claire added, “She had always been my rock, the person I turned to: and suddenly I had to make plans and decisions–often concealing them so that she wouldn’t feel ‘controlled’ or hindered in the way she wanted to live. I had to get problems out of the way before they occurred. The reward was great, however. Always close, as parent and child and later as friends, we became closer still.”

When asked what she gave up to be a caregiver, she replied, “I gave up friends, socializing, all the activities I’d enjoyed which took me away from the house at night. I gave up the self-care providers I’d gone to a lot because I couldn’t afford them. I gained weight and my blood pressure went up. I felt like a dog chained in a really nice back yard–a nice little house, a woman I loved with all my heart–but chained there by love and choice.”

Another woman began caring for her elderly grandmother, when a friend of hers, who has mental disorders, was suddenly left alone when her husband died. She now cares for the two. “The most difficult part of caregiving for Grandma for me is accepting the loss of the friendship we’d built over the years, with her retired and me out of work for awhile so spending time together during the day. We used to go out to eat together, go to art galleries together, read books together, go for drives, etc… now she barely remembers who I am and can’t follow conversations for long… The most rewarding part of caring for Grandma is knowing that she’s relatively comfortable and in her own home where she recognizes the surroundings.”

She adds, “The hardest part of caregiving for my friend is wondering if I’m doing the right thing, how best to help her get more self-sufficient or even if she can become more stable mentally.” However, she finds, “Every now and then I can see the ‘person’ underneath the day to day stress of staying alive.” This also shows that it’s not always a family member that will step in and help. Then what? Sometimes non-family members walk into these caregiving roles, because the alternative may be letting someone die or completely abandoning them. Some changes she would like to see are, “Sometimes I sense that people don’t think of caregiving as real work since it doesn’t bring in money…I hear from people that I should be out looking for a job rather than hanging out with Grandma…but it’s not ‘hanging out’ so much as ‘helping out!’ In looking for outlets, she finds, “there are different kinds of caregiver support groups but I’d like a way to stay connected to some of the things I used to do as a twenty-something.”

A different perspective can be heard by a man whose parents were able to afford the often pricey senior care facilities. He said, “My sister and I both felt terrible to have to take away the car keys and move them out their home, but since my dad could sort of afford it, we felt it was the most sensible step to get them the best help they needed.” He reported their stays were relatively comfortable as they were kept clean and well-fed and had their medications when needed. A bright side to this experience for him, “They both loved it whenever anyone would come in to entertain. So now, in my retirement, I’ve become a singer, and go with a group into senior homes–payback for those who entertained my folks.” A facility is definitely an alternative to home caregiving or an end to it. Positive stories such as this one are encouraging for those who might be facing this difficult decision.

As you can see, there are a lot of emotions involved in caregiving, ups and downs during the care and the thoughts of eventual loss. Some might resent, but as seen above they also love. Love the person they knew in better times and hope only to make their tough days a little easier.

If the family were a boat, it would be a canoe that makes no progress unless everyone paddles.

Cottin Pogrebin, Letty. Family and Politics. McGraw Hill Book Company, 1983.

We love our mothers, fathers, friends, husbands, or whomever we might care for, but we can’t do it alone. Isolation is a big issue for caregivers as most can’t leave the person in their care alone at all. Some might have some opportunities to go out and socialize in the real world, by getting relief from paid help or from a sibling or spouse willing to be a backup. As visitors are necessary for the elderly, so are they important for these sometimes twenty-somethings who are also isolated in the home. If you have a friend who is a caregiver, don’t assume they are fine because they are the nurturing-type. Without friends or family calling and supporting them, they can start to feel as though they are the ill ones as well. The number of caregivers is increasing as the baby boomers age; therefore, something should be considered for their care. Yes, care for the caregivers. They give up a good portion of their lives to aid another and in the process are often spending years homebound themselves. They are at times unemployed because of the difficulty of juggling their home life while trying to maintain a career. Many give up their careers or put them on hold. Offers of telecommuting jobs could be geared to these caregivers, to those that time permits. It’s all about doing the right thing, right for the person in need, right for the person taking care of them, and right for society, because at some point these caregivers will be back in the working world or at least participating in the world again. The transition should be made smoother by looking out for them beforehand. It will be easier on the workforce, and on the people that are connected to them. I have heard of burnout problems, repercussions from isolation, health problems for lack of time to care for themselves, and lack of money for their own needs. Caregivers give and need a little in return, so spread the love. We can do this together.

If you are a caregiver and need to help yourself, check out the resources available from the Family Caregiver Alliance, a national organization at www.caregiver.org. Another site to help you gather a community of helpers is Lotsa Helping Hands at www.lotsahelpinghands.com. Don’t be afraid to ask for help or to get medical attention for yourself. Remember to make taking care of yourself a priority too.

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