Investing in Yourself

Photo by Mohamed Nohassi on Unsplash

In caring for my husband who suffered from MS, I was often guilty of neglecting my own well-being. Fortunately, it didn’t take me long to realize that investing in myself not only benefited me but also enhanced my ability to care for my husband. Here are a few of the areas I learned to prioritize in order to care for myself. 

My physical health became a high priority. Investing time in regular exercise, a balanced diet, and sufficient sleep, though not always possible, proved to be crucial. In order to manage all the details of caring for my husband, I needed sufficient energy levels, mental clarity, and overall resilience. By paying attention to my physical health, I not only felt better but I became a better caregiver, too.

My mental and emotional wellness were of equal importance. The emotional toll of caregiving could be overwhelming, so to lighten my load I joined a caregivers’ support group and made time to meditate, if only for ten minutes a day. I also committed to practicing mindfulness so I didn’t operate on automatic pilot when performing routine tasks. This allowed me to be present for my husband and avoid costly mistakes. Sessions with my compassionate psychotherapist helped me to cope, and calling on friends and family members gave me relief when I was feeling overwhelmed. 

Continuous learning and skill development were essential as my husband’s MS became more advanced and his care became more complicated. I attended workshops, learned from others in my support group, and learned from medical professionals. As time went on, I was able to do medical procedures such as changing Foley catheters and administering bullous feeding when my husband was no longer able to eat. Over time, I learned to accomplish complicated tasks I never dreamed I could do. 

During my caregiving years, I came to realize the importance of self-investment, learning to prioritize my physical health, mental and emotional wellness, and engage in continuous learning. In my memoir, Watching for Dragonflies: A Caregiver’s Transformative Journey, you can learn  more about the ways in which I stretched the boundaries of what I believed I could do, in this and in other areas of my life. I hope my story will inspire others to invest in themselves, whatever their role may be.

Being Thankful for the Gifts of Caregiving

Photo by Priscilla Du Preez 🇨🇦 on Unsplash

My time of caregiving for my husband throughout his years of living with MS included its share of stress and struggle, yet caregiving also brought many gifts. I discovered hidden internal resources and developed new skills that stretched my understanding of what I could do.

Through embracing the challenges of caregiving, I learned to trust myself to do what had to be done to care for my husband, Michael, despite my self-doubt and lack of experience. For example, in the latter stages of Michael’s disease, I learned to accomplish procedures that only an RN could comfortably do, such as administering IV medications and changing his Foley catheters while maintaining a sterile environment. As his condition worsened, Michael came to trust me more and more, and I was able to ensure that he received the right medical care and the right follow-up—from me.

Though I developed new confidence in myself and in my ability to meet the challenges of caregiving, I was not immune to making mistakes. Fortunately, I was able to take my mistakes in stride, though not without regret, and I was able to learn from them. Over the years, by building upon past experiences, both positive and negative, I became more knowledgeable and able to respond appropriately to new challenges as they occurred. 

My compassion for Michael increased over my time as a caregiver as did my compassion for myself. As being his caregiver became more complicated and stressful, I hired a wonderful woman who helped me take care of Michael. I was able to recognize my need for help with understanding rather than guilt, and because I wanted the best for my husband. 

More than ever in my life, I turned to my dreams and spiritual practices for insight and direction, and they served me well. I paid careful attention to the archetypal figures that appeared in my dreams. On one occasion, I dreamt of a strange goddess. I saw a young woman who had been enchanted; eyes had appeared all over her head and in her long, dark hair. She was beautiful. I sensed that this dream was showing me that my awareness was increasing and that I was becoming more conscious of my nurturing feminine energy with the intuition and collaborative power it brings. Goddess figures offered me insight into the importance of power with as opposed to power over and guided me in working collaborative with Michael, paying attention to his fears and opinions as well as his needs. 

Powerful masculine figures in my dreams helped me develop the assertiveness to effectively deal with the medical system when it wasn’t working in Michael’s best interest. On one occasion, Michael was in the hospital with a recurrence of aspiration pneumonia, and after several days he still was not responding to treatment. I ask his doctor, Dr. Palmer, to confer with the doctor who, earlier that year, had successfully cured Michael of aspiration pneumonia. It seemed to me that the treatment that worked before might do so again. Dr. Palmer refused to contact this doctor, who was located in another hospital in the same system. When he switched Michael from IV antibiotics to the oral form, I knew he was doing this too soon. I expressed my concerns, but the doctor abruptly informed me that he knew best. End of discussion. Well, I knew differently. 

I had to find the assertiveness and faith in my own judgement to fire Dr. Palmer. It wasn’t easy for me to confront the doctor, but I felt compelled to do so. Fortunately, I was able to find another hospital doctor who was willing to take Michael’s case. He readily agreed to consult with the doctor who had treated Michael previously, and one of the first things he did was to put Michael back on IV antibiotics with a new combination of drugs. At last, I felt reassured and could relax in the belief that Michael was once again in good hands. 

In addition to dreams, other spiritual pursuits helped me become a better caregiver. For example, consulting the Medicine Cards brought me Native American wisdom, and my continuing involvement in Tibetan Buddhism helped sustain and direct me. As time went on, caregiving became a vehicle for my personal and spiritual growth that points the way for me still. 

It’s amazing how necessity can teach us new behaviors and foster a new belief in ourselves. With love as our guide and caring for a loved-one as our purpose, we can discover the many gifts of caregiving. I would love to know what gifts you are thankful for. Please leave a comment.

Planning for Your Own Future Care

I was in a MS Society support group for people with loved ones diagnosed with MS. One of the things we learned was how important it is for spouses to have a plan for their long-term care. Because our spouses may not be there for us when we’ll need care, we must look to the future and be sure we’ll have the support we may need.

My focus was so fine-tuned on my husband’s needs, I would never have thought of this on my own. But I realized I needed to be compassionate for myself as well as for my husband. Overcoming my aversion to even considering that he might die and leave me alone, I decided to heed the advice we’d been given. I was fortunate that I was able to take out long-term care insurance early on, before it became prohibitively expensive. My policy provides for in-home care as well as assisted living and nursing home coverage. Today, however, these insurance companies are having difficulty making a profit and some have left the market. Qualifying for care is a problem, also, if you have an existing medical condition. Still, it may be worth investigating this option.

But long-term care insurance is not the only way to pay for your future care. Below are some other options. 

  • Pay with Your Own Funds. This is what most people do, at least for as long as funds last. If you can set aside a substantial amount of money for this every month, you may be able to pay as you go, at least for a while. Yet, as you may already know if you’ve researched care options for your spouse, private care can be very expensive, often more than $26/hour. Assisted living facilities can run between $2,800 to $4,500 a month or more. Skilled nursing facilities are even more expensive, averaging around $8,000 a month. If you’re paying with your own funds, you’d probably run out of money before then. 

When my father was disabled, I had to spend down his money in order to give him the care he needed. That led me to enroll him in the next option as a last resort. 

  • Medicaid or, in California, Medi-Cal. This is a joint federal and state program that helps with medical costs for people with limited income. Unlike Medicare, it pays for nursing home care and personal services. It will not pay for the costs of assisted living facilities. Limited funds are available for in-home care. It’s a complicated procedure to qualify for Medicare or Medi-Cal, but in the end, it may be your best choice. If you think you may need this, start keeping track of your care expenditures early. More information on that can be found at https://www.medicaid.govand https://www.coveredca.com/medi-cal/

Whatever you do, remember to have compassion for yourself as well as for your loved-one. Often, we’re so absorbed in being a caregiver that we forget to care for ourselves. Please don’t let that happen.