August 15, 2014

Families Fractured Over Health Care and End of Life Decisions

“Many families are broken over elder-care and the inheritance after death,” my daughter informs me.

“Really?” I ask.

This seems to be happening in our family.

“Yes,” Elsa replies. “Look at Melody’s family. Her mother’s siblings are suing each other over their mother’s estate. One child feels that he did not inherit enough.”

This is sad. I know that it happens. In a way, it is happening to us.

I have no siblings, so my mother’s estate is not an issue. However, making decisions about her care IS the issue that causes conflicts.

There is a lot of tension and resentment between me and mymother’s sibling, my aunt.

My aunt is an opinionated person. She is intelligent and fairly informed. Even though she is older than my mother, (92) her mind is sharp and intact. She would like to be in charge of my mother’s health-care decisions, despite the fact that she lives 610 miles away. Even with her age, she has been willing and able to travel to see my mother several times each year, to visit, to keep my mother company and to be a support. It is kind, generous and lovely for her to do so. But her visits can also make life hard for me, for Alice and for my mother.

My aunt is distraught about many things concerning my mother’s care. She feels that Alice and I do not stimulate my mother enough. She feels that my mother does not get out enough. She feels that my mother does not exercise enough.  She feels that my mother does not converse enough. She feels that my mother does not have the opportunity to make decisions any more. She feels that Alice’s cooking does not excite my mother’s palette and therefore does not entice her to eat enough. She believes that my mother is not exposed to the news enough, either by having the opportunity to read the NY Times herself or by having articles read to her. My aunt wants one of us to deliver the paper daily.

My aunt makes good points. I hear what she is saying and I try to implement many of her suggestions as best I can. I ask Alice to make sure my mother’s music is on. I ask Alice to take my mother outside on nice days. I bring the paper over when I am done with it and am visiting. But, I am not my mother’s primary caregiver. I’m like a middle-man, and I try to support Alice, while making sure my mother’s basic needs are being met. I know that Alice is dealing with many other things besides the NY Times, including the daily routines, like teeth brushing, which may happen several times each day because my mother does not remember doing them and asks to do them again. And again. And like using the toilet, again and again. These activities are time consuming and can take hours and hours. And this can be my mother’s morning, or her afternoon. This is what Alice is doing with her, instead of fulfilling the needs that my aunt has deemed so important.

What is FRUSTRATING to me, is that whatever Alice and I are able to do, including periodic implementations of my aunt’s suggestions, is not enough. My aunt always has more that she believes needs to be done for my mother. Further, my aunt truly resents the decisions I have made for my mother, specifically the decision to enter her into hospice.

“How could the doctor recommend hospice without having seen her?” she asked. “Whose idea was this?”

The inference, of course, is that I am giving up on my mother and not ‘going the distance’ for her. I want her to die. I want to kill her off. I am ‘prepared’ for her death. Her death will make my life easier.

Well, my mother’s doctor actually explained in May that before long, hospice would probably be in order. A visiting nurse actually suggested that we enroll in hospice at the end of July. Three hospice nurses actually visited and interviewed my mother in August and felt that she was appropriate for the program. So, here we have numerous professionals who believe that this is the right course of action for my mother, although my aunt disagrees.

I feel badly that my aunt is so disappointed in this recent turn of events. But, I also feel that it will be impossible for her to accept the issues that my mother, and Alice and me, are actually facing. Denial is very popular in my mother’s family and I suspect that my aunt’s reactions to these developments are denial-related. It must be awful to think about one’s baby sister as being terminally ill. But considering their ages, I think it’s reasonable to expect death as inevitable, eventually.

On the other hand, I believe that my mother and her sister and cousins have been remarkably lucky that they are all alive and able to speak on the phone daily at ages 89, 90, 91 and 92. I sense an absence of appreciation on their parts that this amazing phenomenon continues. If I were this age, I might expect it to end any day. But they seem to feel it’s their right to continue speaking daily, and if any health issue or technology issue interferes, it’s someone’s fault.

Crazy as it sounds, I believe that I am being blamed (by my aunt and her cousin) for my mother’s failing health and subsequent inability to think clearly, to speak clearly or to answer phone calls. If my mother cannot function, it is because I have over-medicated her or I have not stimulated her enough. I have not provided pleasant meals, outings or other things that she needs.

Amazingly, I am a working mother, daughter and wife. I believe that my primary responsibilities are to meet the needs of: 1. my children, 2. my husband, and 3. my employer (and my young students). I am the daughter of an elderly woman for whom I have made sure the bulk of her daily needs are met. But my mother’s care is not my primary job and, honestly, it is not my primary concern. She has had a long life and has lived well for many years. She has not been happy for many of those years and for that, I am sorry, but not responsible. Regardless, she has had her many, many years of life prior to her current illnesses.

So, in our family, we are not fighting over money as much as we are fighting over power and decision-making rights. We are fighting over what are reasonable health-care decisions based on my mother’s conditions and prognoses. The cost of these conflicts is the strain in the relationships between my aunt, her children, (my cousins,) and me. We used to be very close and supportive of one another. There used to be lots of communication: visits, texts, emails, Facebook messages, phone calls and abundant support.

In recent months, that support and communication has evaporated. I believe that the evaporation centers around my aunt’s unhappiness about my mother’s current condition and my aunt's beliefs that I am a bad daughter and a poor care giver. I believe that she has influenced my cousins. I believe that now our small family is fractured, just as if we were in disagreement over a will or an inheritance.

It doesn’t have to be this way, but at this point in time, it is this way. I accept this.

But it is sad for all of us. 

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