I feel like I am becoming a seasoned pro at caregiving. I left Bard College to spend a year taking care of my grandparents, when my grandmother was dying of stomach cancer and my grandfather had Alzheimer's Disease. I spent several months caring for my mom as she was dying of metastatic lung cancer and now I am helping my aunt take care of my uncle, as he is in the advanced stages of heart and liver failure.
To be fair, my aunt is doing the bulk of the work and is completely stressed out from it. She is the one caring for him every-single day and ultimately the one tasked with making tough decisions regarding his care. I have been staying at their house several days a week, trying to help her and my uncle in any way that I can. It's emotionally draining, as I feel like we are all always on the brink of crying or having a melt down.
We are lucky to have so many amazing friends wiling to help out. Friends that stay with my aunt and uncle, so that I can lead a semi-normal life. Friends that stop by with meals or with information regarding health care options. Friends that call or send cards. I think that life takes a village. Family may often be the first line of help, but we could not possibly do it without friends and neighbors. I'm immeasurably grateful.
Last week, we had a family friend recommend that we look into hospice. Often hospice has a bad connotation, like it's a form of giving up, as it's for patients with a terminal diagnosis, less than six months to live. The misnomers are that the patient has to give up his rights or that they won't be able to see their own doctors. We flip-flopped on the decision to call them.
After reading the paperwork, speaking with various professionals and friends who have had hospice experience and scouring the internet, it seems like hospice is exactly what we need. My uncle has declined to the point where he has trouble walking, refuses to go to doctors (I think that it's too much exertion for him), is constantly dizzy and has dementia. Last week, it took him several minutes to recognize me. He is confused in his own home, not knowing where he is. His sleeping patterns mimic a cat.
Hospice would give us a dedicated group of doctors, who would work with my uncle's own doctors to manage his health care and the focus would be on quality of life, rather than quantity. We would have nurses and aids visiting the house, helping him with showers (something that we can no way manage at the moment), giving respite to my aunt, et... It won't cover everything and we may need to hire extra home help, but it's a start. If he improves, he can go off of hospice care.
The only hitch is right now my uncle doesn't qualify. The hospice nurse came by the house and said that he was likely a hospice candidate. She could tell that he was in advanced stages of organ failure. However, his primary care physician needs to state that he has "Six Months or Less to Live".
Personally, I find this qualification a bit ridiculous. My uncle himself is a living miracle, having defied all doctors guesses on his life expectancy. I'm not talking months or years, I am talking decades. Nobody knows how long someone has to live, they can just make their best guesses.
The second issue, is this doctor has not seen my uncle in two years, because he has been going to a team of specialists. The specialists can't sign off on it. Right now, we are trying to get the various specialists to give their info to the primary care and hopefully get it signed off, without having to try to bring him in for an appointment. We can't and we desperately need the professional home care to start asap. We are not nurses and this has been difficult.
In the evening after the visit from the hospice representative, we decided to watch an episode of Lisa Ling's Our America that my aunt had saved on her DVR. I love Ling's documentary series and highly recommend it. The episode that we watched, The Secret Lives of Seniors, was particularly poignant and timely.
The Secret Lives of Seniors tackles aging from various angles. Some are lighthearted, like seniors in Florida finding love through speed dating or inspiring, like a woman nearly a hundred who enters running competitions and has broken records for her age group. Two of the stories were difficult for me to watch.
The first was Lisa Ling and her sister trying to figure out how to handle their own father, who lives alone and has begun to show early signs of dementia. The second was a woman who had to take care of her mother, after her mother suffered a stroke and was paralyzed on half of her body.
The main comment from Ling's father and the woman who suffered a stroke, was that they did not want to be burdens to their children. The main comment from the children, was I love you, so you could not be a burden.
I remember my mom saying this to me. She did not want to be a burden to me when she was sick. It was tough, but I never thought of it that way. I also didn't think of it as my duty as a daughter. I just thought that I loved her and wanted to take care of her. Yes, it was hard, very hard. It was draining. However, it was worse when she pushed me away in efforts to be less of a burden. It was hurtful and frustrating.
The daughter of the mother with the stroke made great observations. She pinpointed the most difficult task in care taking for a parent. It's not the time or money. It's about managing the role reversals. It's so hard on both the child and parent, when the child is suddenly the caretaker. It has to be done with respect and dignity on both sides. It also should be acknowledged and discussed. There is no one right way to handle it and the situation dictates a learning curve as you are navigating new territory. No one should feel that they are a burden or make the other person feel that they are carrying a burden. It's a terrible term to minimize a loving relationship. In fact, I hate the word.
I highly recommend checking out Lisa Ling's Our America, especially the episode The Secret Lives of Seniors. Whether or not you are ever in the position of being a caretaker, aging is an issue to will eventually affect most people. It's something that should be discussed openly.