New Caregiving Demands

February 22, 2011

We will find out tomorrow, from the town, whether we can proceed with Lauren’s new home. We are understandably anxious with so much riding on the decisions of strangers. After the last few months, I feel in dire need of a week on a beach staring at nothing but an occasional passing sailboat, maybe a pina colada in my hand, and the voice of a handsome island native accompanied by steel drums. Peace, pleasure, and no demands on my mind or body. Heaven.

Instead, life is about to get even more complicated, more demanding than we knew it would probably be this Spring. My mother’s health has deteriorated since I was with her in January. We are bringing her and my father back home from Florida. They will move in with George, Lauren, and I. My mother requires pretty much the same level of care as Lauren. And, she has become very confused, dementia may be beginning. There was nowhere else for them to go. Their home is in Florida. Their children – my brother and I – are in New Jersey. My father can no longer provide all of Mom’s care. My home is accessible. My brother’s isn’t. I have a spare bedroom. He does not. I fear that I don’t have the energy, the patience, to meet all of my mother’s needs. I will definitely need a lot of both.

While we deal with this new stage in my parent’s life, the rest of our life will continue with its own demands. Hopefully, we will be getting Lauren’s home, and her, ready for the next phase in her life, and we will be addressing the new challenges that I’m sure will surface before she moves in. My stepdaughter, who we have not seen in five long years (she lives in England), will be visiting in April. She has some health issues that require an accessible environment. I want to be able to make her comfortable and welcome, but I can’t even think about the logistics of that right now. My parents will need to find a new place to live, permanently, here near my brother and I. What will they be able to afford in New Jersey after so many years living in Florida? Will they even be able to live independently with the help of their family? We still have to convince them, no, really, we need to insist, that they can no longer live in Florida. And, George and I need to prepare our home to be put on the market. We need to paint and polish and, what do they call it?.... “stage” our, already beautiful to us, home. We would like to move soon after Lauren is settled.

I need to quickly become seriously acquainted with services, funding, and resources for the elderly. All these years of learning the disability system is only marginally helpful in making sure that my mother has the care that she needs. There are very few things that overlap between services for the elderly and services for the developmentally disabled. Wouldn’t it just make more sense if they did overlap? I see myself providing my mother with the same type and level of care as my daughter. Aren’t the outcomes we seek the same? Professional, inclusive community-based care in their own home or with family, access to medical care as needed, and opportunities for socialization and activities that provide quality of life.

My parents will arrive this weekend. I’m not sure I’m ready, or would ever be ready to take on yet another person who needs such extensive care. The only thing I am sure of today is that there are no island breezes, no hibiscus-scented evenings in my immediate future. I’ll see what I can do about the pina colada.

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