If any of you were around a couple of years ago you are aware of the family drama that arose around my ailing uncle Mac and his wife Eleanor. We were informed in early 2010 that my elderly uncle and his wife were admitted into a nursing home because of advanced illnesses including dementia. My mother and I came out to stay in California to help tend to their affairs, as my mom is my uncle’s closest living relative. They remained in a nursing home for the majority of our stay, which lasted from March until May. Once they returned home, with my aunt in hospice care, we went back to Texas. By first week of June my aunt had passed away and we returned to California to make last arrangements for my aunt and figure out what kind of care to get for my uncle.
Against my advisement my mother decided to take my uncle back to Texas to stay with her and my sister. Also against my advisement they decided to forsake any kind of outside nursing care and the bulk of responsibility of both their care (as my mom is disabled as well) fell to my sister. This came to an explosive head in early January 2012 when my sister assaulted my mother and was arrested and removed from the home.
This all happened right after I moved and was unable to return to Texas to handle any of my mother’s or uncle’s affairs. So we got my mom in contact with Adult Protective Services, which made sure my mom and uncle were sent to the hospital to assess their capability to live on their own.
With my uncle and his diminished mental capacity due to the severe dementia, there will be no coming home – and I understood that from the time they were hospitalized.
My mother may also find herself unable to return home to take care of herself at the end of her convalescent stay. While her mental faculties are fine, her body is very frail. She has required a walker for many years to get around, but as of last year her arthritic pain was so bad she couldn’t even drive herself to her doctor’s appointments and stayed housebound for almost all of 2011. This was the biggest variable as far as I was concerned. As of a few days ago I thought we were simply looking for a nursing home for my uncle to live out his life, which I expected to linger for several more years. Despite his dementia he was strong and fairly healthy by appearance.
Yesterday, however, his doctor called me to discuss end-of-life care for him. Turns out that my uncle had sepsis, renal failure, was dehydrated and malnourished and on top of it had pneumonia because he asphyxiated.
My mother has always believed that we do everything medically possible to keep our loved ones alive, but the doctor was concerned about the quality of my uncle’s life not just the extension of it. My uncle is very confused and agitated to the point he needs to be restrained so as to not pull out any tubes they are using to help keep him going.
Worst of all, with the threat of asphyxiation, the next step to intervene would be a feeding tube which the doctor worries would take away one of the basic, primal pleasures of life for someone already so severely diminished – the pleasure of eating.
I spent about three hours on the phone yesterday discussing the reality of a DNR (do not resuscitate) order and what it would mean if my uncle does not get the feeding tube. Essentially he would be placed in hospice care, which would make him as comfortable as possible while we allowed nature to take its course.
Today I learned from another social worker that as the body fails it shuts down for its own comfort… and that he will eat less and drink less because the body can no longer process food. In effect putting in a feeding tube could add more complications if we seek his comfort and happiness in his final days as a goal.
This means with all these problems he now has the death process has begun. For my ultra-religious mother, who believes we should always leave things open for God to work, this may simply mean man is intervening where God has already begun to call him home.
I don’t speak about my personal faith a lot because I believe it is just that – personal. But I do believe that God is the final authority on matters of life and death. If it’s your time to go, ain’t nothin’ gonna save ya. If not, ain’t nothin’ gonna kill ya. I also believe that when we die we are freed from earthly suffering – like being so confused because you don’t recognize people or places and upset because you can’t remember the past or communicate in the present.
This is where my uncle is currently. I think he’d want us to let him go so he can go on home to his God, to his wife and to everyone who has already passed (like his other two sisters and parents.)
Communicating this to my mother was no easy task. I can’t imagine the responsibility she has on her shoulders. Everything has changed in the blink of an eye these last few weeks. She’s no longer in her home and has no idea where she’ll end up – whether in a nursing home there or assisted living anywhere else. She just had this violent altercation with her eldest daughter, who attacked her when she was vulnerable and shattered any kind of trust between them. She lost all her dogs, her babies, who had to be taken to shelters when she and my uncle were removed from the home. And she may not even be able to go back home (and doesn’t want to because she doesn’t want to face my sister ever again.) Now the doctors are saying she has to make this life and death decision for her brother, the only family she has left in that town.
With Steven just getting us financially back on our feet after the move there’s no way I can go back there to fix things just yet, but I’m sure that’s coming in the next month or so. I’ll probably have to sell her house and get her situated in a new living arrangement. These are hard decisions to make and I think that I’m facing this as someone approaching/in/around middle age is no small coincidence. It’s a stark reminder that we have to make these choices for ourselves while times are good and the idea of “end-of-life care” seems decades away.
In other words… it’s time to make a will.
And it’s time to get healthy so I can put off all these problems as long as humanly possible. An ounce of prevention and all that.
Fortunately Steven has a great new job with outstanding benefits (including life insurance for the entire family) so I can finally address my back problem, which may in fact keep me from doing anything other than orchestrating everything for my mother by phone. I’ve been in California for over two months and I’m still managing acute back pain which keeps me from doing a lot of things I want to do. At least two days a week I’m incapacitated due to back pain. This keeps me from seeking full-time (or even part-time) employment, even if my chosen field of entertainment.
It’s given me a little insight into what my mother has to go through unable to do the things she wants to do, the only difference is I’m trying my best to stay active anyway because I never want to lose my mobility. Some things, however, are beyond even my control. In the state I am in I can’t take care of her, that’s for sure. So now I have to figure out all these things so her needs are met and my uncle’s needs are met. Wants have to come second, which is the toughest sale of all.
So I guess the moral of our story is that we don’t wait for life to take our choices away from us. We think we have all the time in the world but appearances are very often deceiving. Life is bitch that doesn’t wait for you to get prepared for every curve ball. Even while you’re young, healthy and times are good… there’s no better time than the present to make sure you’re prepared.