The difficult decision to move my dad into a nursing home was made for me by my siblings. They told my husband and me that we had done enough and there would be no more 24/7 care in our home. Again, we were trying to find a place where my parents could be together; however, such a place simply did not exist. My mom didn’t want to move anyway.
READ the first part of this article
The move to a nursing home resulted in my dad experiencing some early signs of dementia, but it was temporary and after a month or so, he returned to a more normal state. My mother, on the other hand, was able to stay at the assisted living facility nearly up to the time she died (a little over two years). She eventually died within thirteen months of losing her husband of 66 years. She pretty much gave up on life, becoming very sad and depressed. She was tired of living alone; she prepared herself to leave this life. In her last month of life, she shared that she was seeing her husband nearly every day and missed him terribly. The confusion and sadness led to her needing more care than could be provided by the assisted living center and the decision was made by her and my siblings to move her to the nursing home.
Unfortunately, the move to the nursing home caused her to give up further and she died within two weeks of the move at the age of 89. Moving elderly parents can cause confusion and can expedite their decline.
The housing issues for my in-laws took a different road. Despite the fact that my father-in-law was in poor health, he was able to stay in his senior apartment, primarily due to the daily care provided by his wife. She pretty much took care of him, with some minor support from us. His story ended with regular visits to the local hospital and he eventually died at age 77, quietly and quickly. My mother-in-law successfully maintained their senior apartment for another 15 months after the passing of her husband. Unfortunately, she slipped while stepping off a bus one day and she took a major fall, which landed her in a local hospital and then a rehab facility for over two months.
The same week that my mother passed, we were told by the rehab hospital that our mother-in-law was being discharged. We had to find new housing for my mother-in-law while preparing for a funeral. We found out that our mother’s assisted living facility was paid for through the end of the month and we were only given a week to find a new living situation for her.The solution seemed obvious to both families. Empty out my mother’s assisted-living apartment, repaint it, and move my mother-in-law into the same facility.
It was strange at times to enter the apartment and not find my mother, but rather my mother-in-law. She also felt odd about taking over my mother’s apartment, but she recognized that she had to move quickly. The most frustrating part of the move for my mother-in-law was that the rehab hospital only gave us a week’s notice. It did not help us with placement and expected that, within a week, we would have her placed somewhere else. There was no case management support. My husband and I were the case managers.
Challenging medical recommendations
During my dad’s time in the nursing home (which was only six months), he was taken back and forth to the local ER for different medical issues. At one point, an ER doctor assumed, with no real examination or evidence, that my father was battling dementia or maybe Alzheimer’s. The doctor started talking to us over my dad. He determined that Dad was depressed (who wouldn’t be) and suggested that he have ECT (shock therapy). That woke my dad up and he turned to the doctor and said something to the effect of, “Are you talking about this for me? If so, talk to me, not them . . . .” It certainly surprised the ER doctor.
A similar situation arose with my in-laws. Only in this case, our father-in-law assumed that his wife was developing signs of dementia. He insisted on tests for her without significant buy-in on the “problem” from her. We found ourselves between our parents, each telling us a different story about my mother-in-law’s mental state.
Right to die
An issue that is very difficult to discuss is one’s right to die. My dad believed in his right to choose when, where, and how to pass on. My parents filled out every type of form that was imaginable about end-of-life care including a living will and a health care proxy. One would think these forms would be universally accepted, but many times hospitals wouldn’t recognize them and we had to fill out that facility’s version of the form. Ambulances, too, had their forms and requirements. The worst time that this issue was ignored was when he was in the nursing home.
My dad decided that he had enough of this “staying alive stuff” as he called it. He believed that the only way he could move on toward death would be to stop eating. He called his wife and members of the family in and told us that he was done and was ready to move on—that he would not eat much. He dictated a memo to the nursing home, outlining (in detail) what care he would or would not accept. Included in this memo was the option to refuse food. The document was signed by him, his wife, and our family’s health care proxy (who was my sister, a nursing home RN in Massachusetts). We gave the memo to the nursing home, which refused to accept it—primarily because of the food item. They told us that no one on the staff witnessed it and they could not guarantee that the resident had written it. They interviewed my dad and mom about the memo; Dad only got angrier over not being believed. Multiple staff from the nursing home talked to him, and yet they refused to follow his wishes. The only recourse was for our family to engage the services of the State’s Ombudsman. Needless to say, that ended this issue and the memo was honored.
The final nightmare for us was during his last 24 hours of life. My father landed at the local hospital and it appeared that he had a small bowel obstruction. We refused a medical work up to verify this, and requested comfort care with hospice only. When I arrived at the hospital, I found health care workers force feeding him. I was not a nice person that day. I handed them all his right-to-die papers again, demanded to know why he was being fed, reminded them that we had already set up comfort care only with hospice. I wanted to know why there were IVs and forced feeding going on. I had a verbal fight with a nurse who informed me that she would not “starve” him. I asked how they could feed him with a bowel blockage. All the time, my dad was yelling and begging me to make them stop. It was a terrible scene. Nothing changed until the hospice nurse arrived and took over the care. He died later that night.
Difficult decisions and feelings of guilt
Over the years, I have witnessed how aging adults can struggle with decisions that will lead to major life changes because of health or home care concerns. They find themselves having to let go of their independence and even their understanding of who they are. I heard my parents ask questions like: “How do I know when I need more care?” “How do I know when I need to give up my home and move to a health care facility?” “What do I do when what I want is not what my family wants?”
There were many times when my mom and dad disagreed over his care. She believed he could drive, he knew he couldn’t. He knew he needed more care, she believed she was his nurse. Another story was the day my father-in-law got it in his head that he was no longer going to pay out money on his senior apartment as he was throwing all his savings “down the toilet”. So he started looking at small houses, determined that he would return to the role of homeowner. This upset my mother-in-law and caused a great deal of conflict between them. We all knew he couldn’t maintain a house, let alone move again.
There was also the sense of guilt that all four parents frequently expressed over the years we cared for them. I often heard comments like: “I’m such a burden.” “I’m sorry to have to have you do all this work.” “I hate seeing you do everything for me when you have your own family.” “I can’t believe I can’t do this anymore—it frustrates me!” “I’m so dependent on you.” It is very difficult for aging adults and there seems to be no real words we can offer that can take that guilt away. To be frank and honest, it is difficult and burdensome at times. It does take time away from one’s immediate family and work, and tempers can flare between parent and child. It is, however, part of the circle of life. For me, I would have done anything for my parents and in-laws to help them in their final years of life. They gave so much to me. I had to find ways to give back to them and respond to their struggles.
My husband and I became case managers to the case managers in nearly every medical facility that we dealt with. We regularly reminded case managers of our parents’ doctor appointments, drug plans, insurance plans, and care plans. We helped parents sign up for Medicare Part D. We took over their bills and finances. We filled out all their paperwork. We drove them to the doctor and maintained their prescriptions. We downsized their life. We picked up their groceries. We arranged for their transportation. We did this all while raising a family and keeping full time jobs.
Moving forward
The only real solution I see for families comes when communities and policymakers finally commit to a full range of aging in place care or more comprehensive campus complexes for aging adults at various levels of care. There is some movement in this direction but not nearly enough. I would hope that someday we will have facilities where couples can stay and face their health issues together as they move along the continuum of elder care. I would hope that one day case managers will be given the time they need to really work through complex challenges with the individual, couple, or caregiver.
We are a family that fortunately had the financial resources to handle the costs of different levels of care. Hundreds of thousands of dollars disappeared VERY quickly over a two-year period from my parents’ estate. I think about families that do not have such resources. The decisions they must make are heartbreaking. However, having resources doesn’t guarantee good care. No family should go through what we went through. So many of the challenges and obstacles we experienced as caregivers were unnecessary.
Today, my husband and I recognize that we will soon face new and daunting challenges as we ourselves age.
The caregiving continues…
Laurie Bacheldor is a Senior Consultant and Aging Care Specialist at Pathfinders Consulting Group.
Portions of this article were first printed in the Capital Commons Quarterly, Albany Guardian Society – Issue #1, Vol. 2, April 2008. It has been edited, reformatted, and updated for this blog
READ the first part of this article
Featured image by Laurie Bacheldor