A Personal Story by Roberta Dignan Robinson

I grew up in West Roxbury, married, had children, and relocated to Pelham, New Hampshire.  I was a Paralegal and commuted to Boston for 11 years.

Meanwhile my mother was aging in place, and as her health began to fail, her needs began to increase. So I managed her home care 60 miles away, making frequent trips to West Roxbury to ensure everything was going smoothly and she was getting what she needed. One day I had an epiphany that in order to be available the way she needed I might need to actually be in her home full time. 

And that was exactly what happened.

I found it necessary to move back to West Roxbury, however, not yet into her home as I wanted her to stay as independent as possible. Then the inevitable – in one week, we had four emergencies…the last finding her upside down on the couch with her feet on the back of the couch and her head hanging to the floor. It was then apparent that I needed to take the next step and move in with her.  

At this time, I had a full-time job with the City of Boston Commission on the Affairs of the Elderly. My mother was, apparently, in her death process (who knew?  There was no one to guide me through this journey) and my daughter was in her marriage process in New Hampshire. I was so stressed that I thought I would pass before my mother did. Hers was a slow, subtle 5 year decline. Every year she had an incident which brought her to the hospital, rehab, and then home. In the first year the case manager at the local hospital told me it was the beginning of the end. And so I was on guard…for four more years. It was the 5^th year that she never made it home. I called her the Energizer Bunny.

At the end, it was like a switch had been flipped; she was incontinent, and couldn’t care for herself. I had to clean up day and night and then go to work the next day. I was doing it all.

Caregiving is such a responsibility!! Nobody knows what it’s like until they’ve done it themselves. Kind of like walking a mile in someone else’s shoes…as the expression goes.

I had aides (certified nursing assistants) to help – I called them my angels.  I cooked for them all, and gave them gifts for Christmas. I so appreciated them and couldn’t have done it without them!

The world of elder services is an incredible maze. I was trying to figure out her health, trying to educate myself on available services, and trying to get the best support for her that I could. There was not one person to outline this information for me .  I felt like a bumper car, getting bashed around.

My advice for people who care for seniors in poor health: Coordinate their health care and plug them into life. Get them connected to a community, whether it’s faith-based, an adult day health center, the housing community, or something else. It doesn’t matter what – we need each other! Isolation is the worst enemy for seniors.

Also, look into senior health programs, like PACE (Program of All-Inclusive Care for the Elderly) (there are 8 programs in Massachusetts), Senior Care Options, or services through the local elder services agency. These services can make a major difference for everyone involved.

Don’t forget to take care of the caregiver. My colleague, Dr. Anne Fabiny, has some excellent tips on caring for the caregiver, and here is what she says:

• Find support. Nobody can do it alone. A combination of caring families, friends, neighbors, and professional services often helps.

• Make time for yourself. Try your local Council on Aging or Benefits-Checkup to see what options are available for respite care and other services. Organizations like the American Cancer Society may be able to link you with low-cost or free programs and services to help people of any age. AARP and government publications can guide you to caregiver services and long-term care options.

• Ask for help. It’s OK to tell friends and family the job is too much for you alone. Ask them to help brainstorm solutions. Always accept help when it’s offered. Sometimes getting a few things in place, like transportation, food, or medical appointments, can make a big difference.

• Lean on friends. Ask friends if you can use them as a sounding board. If just one person in your circle can do this, try not to burden him or her. Consider other ways of seeking support as well.  A religious community can also be a source of comfort and emotional support for many.

• Join a support group. Many organizations, hospitals, health organizations, and religious groups offer support groups for caregivers. These groups are a good place to blow off steam and share ideas with people facing similar situations. Some support groups are online, which can be easier for homebound caregivers.

• Consider therapy. Sometimes the best support you can seek is therapy if you’re among the many who find caregiving emotionally stressful. If you feel depressed or overwhelmed, get help from a psychiatrist or therapist. If you don’t know where to turn, ask your doctor for a referral.

Most importantly, don’t forget YOU.  Make some time to have dinner with friends, go to a movie, take a walk, laugh a little.  You must keep your battery charged or you will not be able to be there for your loved one.

I hope you find these resources and tips useful to help improve your loved one’s life as well as your own.

Roberta Dignan Robinson

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