Loneliness and Being a Care Partner

Tuesday, June 5, 2018—10:00 am—59˚F (15˚C)—Mostly cloudy

If someone asked you to name the number one urgent and growing health epidemic in America you might be inclined to say cancer, heart disease, diabetes, or Alzheimer’s disease.

During his years caring for patients, Dr. Vivek Muthy, a former US Surgeon General stated he saw the most common contributor to the growing health epidemic was not heart disease or diabetes, it was loneliness. Today, over 40% of adults in America report feeling lonely.

He continued to say, “We evolved to be social beings and when we’re alone, we’re in a state of stress. That can lead to higher inflammation, which leads to disease. Loneliness also affects how we do at school and work.”

As they say in business, ‘it gets lonely at the top.’ And further, Dr. Murthy has said, “In the workplace, many employees—and half of the CEOs—report feeling lonely in their roles.”

But there are ways to cope.

Growing up in Mumbai, India in the 1950s and 1960s, I lived in a multi-generational family. After moving to the US and getting married, Sumi and I started our family in Michigan. We adapted to American ways and taught our children the value of independence and taking charge of their own lives. This script worked well, both our children are grown and have established their own lives. In effect, we have become an empty-nester couple. Which is how we started our lives in the US—we have come full circle.

As Sumi and I decided to live an independent lifestyle in the US, there was a trade-off in being geographically far away from our extended family members. And unlike in India, where it is common for families to live in a multi-generational home, our children are now living across the country. We have a harder time keeping strong social connections because of the distance. Our main mode of keeping in touch is through phone calls and occasional visits by them.

Taking care of Sumi, my wife of 44 years and who turned 64 last month, has been an emotional roller-coaster. Sumi was diagnosed with Alzheimer’s disease five years ago. With a few exceptions, isolation from close friends and relatives is one casualty of this disease. It is possible that others don’t know how to interact with people with Alzheimer’s or talk to the family, as there are no customary words of consolation like, ‘everything will be okay,’ since there is no cure and no effective treatment for the disease.

As isolation and loneliness in normal people’s lives can cause health issues, think about the care partner who has to take care of their loved one on a 24/7 basis, perhaps with some help from hired caregivers. Many times, I feel I don’t have an ‘adult’ in the house to converse with. On one hand, Sumi has given my life purpose and focus, but there are times I feel like I am ‘in a rut.’ All my dreams and hopes are now on hold. This is a deadly combination, but being cognitive of this thinking pattern I am doing my utmost to take care of my own physical, mental, and emotional well-being.

To compensate for deferring my long-term hopes and dreams, I am learning to live in the present and undertake short-term gratifying tasks to provide me a needed relief from the daily challenges of caretaking. For me, being an effective care partner has two aspects, creative problem-solving and emotion acceptance. With the former aspect, I draw from my career as a problem-solving engineer and life-long use of my left-brain. I have invented, designed, and rigged up solutions to aid in Sumi’s safety and well-being. For example, I have installed cameras in the house to monitor Sumi’s movements. I have also installed a motion sensor alarm in the bedroom so when Sumi tries to get out of bed during the night the alarm sounds so I can attend her needs. I have built a ramp from the foyer to a sunken family room to avoid a step-down or step-up potential tripping hazard. I have covered up all the mirrors and reflective surfaces to avoid Sumi’s confusion when she looks into them. I changed the carpeted bedroom to hardwood so toilet accidents are easier to clean and stops me from getting angry and frustrated. I put soft foam pads on the surfaces where Sumi can potentially bump into while walking. I rigged up a shroud and installed it over the shower temperature knobs so while I give Sumi a shower there are no accidents that spray us with cold or scalding water.

This problem-solving aspect of being a care partner gives me small victories as I test solutions to create a safer and more comfortable environment in our lives. It reminds me, again, of 3 mountaineers as they plan and prepare assiduously for their climbs. Each moment is about the next step. And every next step is his first, without dwelling on the extraneous.

When I find myself in a rut, I remind myself what I have learned while being a care partner for Sumi. That is to take care of myself as well. As they say before a flight takes off, ‘in case of an emergency, first put the oxygen mask on yourself before helping others.’

Below, I’d like to talk about some of the coping mechanisms I use:

The first I’d like to mention is walking with loved ones. Sumi and I walk about 10 miles per week, which helps her eat, excrete, and sleep well. Walking, while holding Sumi’s hand, must be good for both of us, as it helps release endorphins, the brain’s ‘feel-good’ chemicals.

Also, finding quiet meditative time for myself and Sumi away from technological gadgets helps. Lately, Sumi doesn’t like watching TV or seeing me talk on the phone in her presence. In the last few weeks I have stopped watching TV and instead we listen to music that Sumi likes while holding each other’s hands. This calms her down and I find it meditative. Music is also known to release endorphins so we both get to benefit from it!

Working around the house also helps me cope. Activities such as planting flowers in the spring, cutting grass, pruning rose-buses, and trimming hedges and bushes are things I have control over. I can shape them to my fancy, which fits my watchword of ‘control the controllable and manage the uncontrollable.’

Learning new skills keeps my mind stimulated. I have learned to cook and experiment with new recipes. I find this creative, as I use raw materials to create and finish a dish in a matter of minutes before consuming it to get satisfaction. I find the appearance, aroma, and taste of the finished dish is a true gauge of my state of mind. If it’s great, then I am relaxed as I know I was able to fully concentrate to prepare the dish.

Engaging in other creative activities also helps me find respite from daily mundane chores. Recently, I joined a program called ‘Art of the Caregivers’ offered by the Birmingham Bloomfield Art Center. These classes are bi-weekly and I get to learn many different forms of art 4 as an outlet for expressing myself. During these classes I get so engrossed in the art project that momentarily I forget about caregiving.

Joining support groups to engage with others who are facing similar challenges is also a way to help cope. This provides an outlet for openly grieving and learning from others. I attend two support groups for caregivers. I am able to listen to others about their trials and tribulations as care partners or caregivers and at the same time, share the best practices I employ in taking care of Sumi. Everyone shares their feelings openly, as things discussed in these groups are confidential.

I’ve also found planting the seeds of awareness for this disease gives me an outlet for my inner voice. I have established meaningful connections with friends and relatives through My Journey with Sumi, which is a WhatsApp group where I write candidly in a diary format about our lives as well as my thoughts and feelings. This relieves me from brooding and I find it therapeutic.

I get pleasure from sharing my knowledge and helping others. I mentor a young female entrepreneur and another friend in his business. Helping them helps me.

With these coping mechanisms, overall, I find myself at peace. Only time will tell if they will continue to work against the increasing challenges of caring.

Martin Schreiber, a former Governor of Wisconsin who is a care partner for his wife with Alzheimer’s, states at the end of his book, My Two Elaines, “If you ever hear of someone who is completely successful, healthy, and happy as an Alzheimer’s care partner by going it alone, let me know. That person should be written up in the medical journals and maybe even considered for sainthood.”

I know, I ain’t no Saint!