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Personal Viewpoint of Life Care Planning

The genesis of our elder law practice really began out of necessity. My mom was my grandmother’s caregiver. Unexpectedly, my mother died in 2001. By default, I became the caregiver of my then 87 year old grandmother.

What I was experiencing was not unique Many of my clients were experiencing the same issues: how can they find, get and pay for good care for their loved one, yet maintain as much dignity and freedom as possible for their loved ones.

These experiences lead us to retool our elder law practice to provide for Life Care Planning.

Since that retooling, we have helped close to 100 families with Life Care Planning. Recently, I had my own personal experience with the benefits of Life Care Planning.

It all started in June of this year. My grandmother (Mammaw, as I call her) was just not feeling well (in hindsight, she probably had a stomach virus). She was not eating and was growing weak. She ended up in the hospital for five days. The day before her discharge, our care coordinator, Marie Leiker, visited with Mammaw. Marie expressed concern to me about the color of Mammaw’s lips and some changes in her face. By morning, Mammaw had developed blood clots in her right arm and shoulder. She had lost feeling in her right arm and the arm was going to die if we did nothing. But she was 95-years-old; what was I to do?

After consulting with the doctor, my family and Marie, we made the decision to intervene and pursue treatment. The cardiologist was able to remove the clots. It was determined that my grandmother had a stroke.

She was moved to intensive care. Delirium and dementia set in. She did not recognize me. The doctor and staff began painting a bleak picture. I needed to find a nursing home, I was told. Each day I prayed that God would just take her – do not leave her like this.

If I am honest, I know that part of me prayed that I would not have to make a decision to put her in a nursing home. How, I asked myself, have we gone so quickly from a bright, happy woman to someone who does not even know me?

I called my family in so they could have their final goodbyes with Mammaw.

The hospital staff’s patience with me wore thin. We were now at three weeks. They wanted to discharge Mammaw to a nursing home. The assisted living facility staff said her required physical level of care was too great for it to handle.

For me, things were becoming emotionally more difficult. My grandmother was becoming more aware, as the delirium was subsiding – and as a result, moving to a nursing home was going to be psychologically difficult for her. She would be aware of the change in her “home”. How was I going to tell Mammaw that she could not go back with the friends she had formed over the last two years at the assisted living facility?

I turned to Marie of my office, Mammaw’s life care coordinator (yes, I have a Life Care Plan for my grandmother). Marie asked that she be allowed to intervene on Mammaw’s behalf. She spoke with representatives of the assisted living facility and the hospital, and “negotiated a deal.”

If I would arrange for care assistants to care for my grandmother 24 hours a day, the assisted living facility would take Mammaw back. Marie obtained a list of caregivers, arranged meetings between them and me, and we finally had a plan in place. On a Friday, Mammaw was released to the assisted living facility with me providing care assistants 24-hours a day.

My grandmother and I were not through the woods yet. For some reason, she was not eating. And if she did not eat, she would not regain her strength. She continued to physically decline.

About two days after returning to assisted living, a decision was made to place her on comfort care (“hospice” to you and me). The hospital agreed; the assisted living facility agreed; and I agreed.

Later that evening, I was told by Mammaw’s doctor that I was making a choice between making her better by taking drugs, or I was choosing to hasten her death by taking her off the drugs. That night, I slept very little.

The next morning, I met with Marie. To say Marie was upset with the doctor is an understatement. She explained that she understood how hard my decision was to make. She assured me that the doctor was wrong, that I was not making a choice between drugs that extended Mammaw’s life and speeding up her death.

Marie then met with the nurse at the assisted living facility. They went through Mammaw’s various medications and produced a list for the doctor of medicines that we wanted stopped, and of the ones we wanted continued.

Guess what? After a couple of days on comfort care, Mammaw was much better. She could now eat and enjoy her food. She became more aware.

After one week, the personal assistants were reduced to two 8-hour shifts. After about eight or nine days, there was no need for any personal assistants at all.

Postscript
As I was writing this article, I answered a phone call from the assisted living facility. The new care plan at the assisted living facility was calling for a reduction in services to my grandmother. That means she can do more things independently, without any help. That means she is healthier! My grandmother is back. She had her 95th birthday during this episode.

I am grateful for two things. First, I am glad that God did not grant my prayer to take my grandmother. (He clearly knows more about this stuff than I do.) Second, I am glad that I have a Life Care Plan for my grandmother and that her care coordinator (and now my eternal friend) was there to help my grandmother, me and my family.

I have come to realize, once again, that no matter who you are, whatever your background, regardless of your occupation or education, we all need help.

When it comes to dealing with someone with a chronic illness and having to plan and to make decisions for that chronically ill person, we need an outside objective person that will advocate for what we want. That advocacy may be with the doctor, the long term care facility, caregivers or even family members. We need someone who will not just accept what others tell us and will help us achieve our goals of maintaining independence as long as possible.

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