LongTerm Care & Families

One Caregivers Experience
October 9th, 2007 I found myself sitting beside my mother for what would be possibly the 20th visit to a doctor's office, Urgent Care or an emergency room since July. Symptoms seemed to allude us and no answers were ever able to conclude why she wasn't feeling well. Onset of depression, lower back pain that wrapped around to her abdominal area, nausea, and loss of weight. We both had our suspicions yet hearing a diagnosis of pancreatic cancer, cancer that had spread to her liver by this time was devastating. Our lives were drastically going to change as we battled this cancer, the silent killer, pancreatic cancer.
Physical care for my mother had began years earlier with various health issues and surgeries. The goal was always to work towards independence so she could live on her own. This typically involved her living with us for short periods of time during recovery and then returning to her home.
In December of 2007 we invited my Mom to move in with us, actually stating it as combining households. She agreed I believe primarily because she saw the toll of me caring for my family and her along with both homes was becoming difficult.
The changes that occurred over the next months in our home were dramatic. Assisting our three children still living at home ages, 10, 13, and 17 at the time to life with Grandma here, working through the emotional adjustment to dealing with a terminal illness in our faces every day, assisting my Mom in dealing with her losses of health, her home, her independence, and managing the pain that accompanies pancreatic cancer all became my life as I left my work and set my business on hold.
My mother's experience is rare with pancreatic cancer as she lived almost a year beyond her diagnosis. Typically because the diagnosis is late in pancreatic cancer, most people have much less time once they are officially diagnosed. The year was one of the most difficult experiences I've encountered in terms of managing life while being completely exhausted on a day to day basis. Truly feeling "sandwiched" between my children's needs and my Mom's meant I felt like I was not meeting any one's needs let alone even knowing what my own needs might be.
The gift in all of this was seeing my children mature, rise to the needs of their grandma, often sacrificing social plans, working as a team with my husband to care for my Mom physically as well as emotionally, mentally, and spiritually. Each night after tucking her into bed, we would meet like a staff review to see how the day went, changes that occurred and plan for the coming days needs.
The most difficult issues in the year of care were the loss of income, absence of support from siblings, and the unknown of how long this would go on. Though we may have received a cheer from my siblings here and there what we really needed was a night off, a day away, cash for groceries or a cup of coffee. With their busy lives and other priorities, visits were short and sweet, yet opinions on care plans and her finances where plentiful. This was by far my greatest challenge, to care for my Mom and not allow my disappointment towards my siblings to negatively affect the care I gave. I came to accept that each person was dealing with losing our mother differently, making the choice to assume the best and offer grace ultimately is the focus that helped me deal with the lack of support.
Through all of this my husband, my four children, and my Mom grew very close. There began a silent communication, an understanding of what might need to be done. We intentionally allowed the kids to be honest about what was difficult in having her with us and how they felt about her dying in our home. My Mom, gracious even in all her pain, encouraged us and taught us each lesson we would have missed had we not had her in our home.
Two weeks prior to her dying she agreed to use hospice. I remember crying when I came in the door and saw a home health aide sweeping my dining room floor. She thought she was doing something wrong, I cried out of relief that help was here! Using hospice was like giving up for my Mom. It was difficult because I needed help and her insurance would cover hospice, not home health aides alone. I felt like my Mom was between a rock and a hard place seeing her daughter exhausted and but not wanting to start hospice, the beginning of the end from her perspective.
In the end, the experience of having my children and husband with me as we read scriptures, sang quietly and by her request spoke the names of Jesus over and over again as she died was as miraculous as birthing my children. For those moments and all the lessons learned I can state confidently I have no regrets. This, is a powerful gift, to wake each morning with no regrets.

How Health Care Might be Improved Related to Long Term Care
After my experience of caring for my Mom in our home for over a year here are some basic improvements I believe could enhance long term care for patients and families.

• Simplify the insurance coverage.
  

Covering hospice 100% but not covering home health aides meant going without support and assistance till my Mom's health had significantly declined, when I could have used the help months prior to that point. What is covered and what is not, from types of chemo, forms of medicine, one wheelchair over another, etc. was extremely exhausting emotionally and mentally.

• Develop resources to enable families to offer more of the direct care.

We saved Medicare money by having my Mom in our home. We wanted her here for several reasons but it would have been nice to receive some reimbursement/credit for not burdening the system by her family providing the care. Costs involve more than just the physical care but increased utility bills due to oxygen machines use, climate regulating, etc. By assisting the family financially who is taking responsibility for the care of a loved one who qualifies to be placed in a long term care facility, enables the family to focus more on the direct care rather than the losses financially.

• Educate families on caring for a loved one

In the United States we have distanced ourselves from much of what appears to be unpleasant. Illness, death and dying in an up close, personal manner are not typical experiences for most Americans, especially young citizens. We try to protect our children from the sadness of these events rather than using them as teaching tools that can enable them to better meet the needs of people they will encounter in life. Education, promotion, financial benefits, and programming that supports families who care for a member of the family could have a positive impact on the long term care care systems that are overloaded and understaffed.

Sandy Anderson, BAS Community Health Education
Parent Educator & Family Coach
Lactation Specialist