I’ve been getting through these last few days on caffeine and anger. Caffeine clears the fog out of my sleep-starved brain and anger gives me the adrenaline rush necessary to get through the day. And, there’s a lot to get angry about. I am angry at my parents for not planning, in any way, for the day that one or both of them would be sick or incapacitated. I am angry that they gave no consideration to my situation – providing all consuming, 24/7 care for my daughter for the last twenty-five years, care that will never really end. I am angry that, now that their circumstances and needs have changed so dramatically, my father is still being stubborn and difficult as we try to meet my mother’s needs.
I’m also angry at the insanity of social service systems. It is insane that we have two completely different systems and points of entry for individuals with developmental disabilities and geriatric care. Much of their needs are basically the same. It is interesting as well, that although services for the developmentally disabled are designed for individuals who will most likely not have any dramatic changes in skill level or health, services to meet the needs of the geriatric population concentrate on those who get sick and need to convalesce and those who get sick and decline rather quickly to the inevitable. They are not designed for those who linger. The services that are available disappear if you do not improve or you do not deteriorate.
I met with the hospice social worker yesterday. She provided a crash course on the service system for the elderly. A nursing home will not provide the level and quality of care that Mom needs, and that we want for her. A 24/7 caregiver would, but will probably deplete their finances in about three years and then Mom would end up in a nursing home anyway. Plus, Mom and Dad have nowhere to live in New Jersey and cannot afford New Jersey real estate prices (remember that my husband and I need to downsize and my brother has no room.). My parents spend about $4,000 a year for rent and utilities in Florida. That is far below what it will cost to live in New Jersey. And if all of their money goes to care for my mother, what about my father? He still needs to have money to live on, and eventually, will need money for his own care.
After spending so much time over the last few years trying to find a way to provide Lauren with a home of her own where she can receive the care that she needs, I find myself asking the same questions about my mother – How can this possibly work financially? How can we provide an acceptable level of care? Does this really have to be this difficult?
Well, my last cup of caffeine is wearing off, time for a booster cup. I am not going to find the answers to my questions today. Today, I will just continue to ride the wave of anger.