Sunday, August 17, 2008

on death and dying

I've been thinking about my own finite nature lately.

I'm not trying to be morbid. But I'm seeing a lot of changes around me, changes that are normal and part of life. (I can't help but remember one of my mom's sayings, "Where there's life, there's death". She also told me that whenever I felt bad about my life, to look around at someone who's worse off - then that should make me feel better....what can I say? She was ... Sicilian.)

Recently, I was devastated with the news that a dear, dear friend of mine has been diagnosed with Alzheimer's. This is a friend who many turn to for her love and kindness, and probably the most powerful prayer I've ever encountered. I owe Mary for showing the way to find the faith within my heart, faith that has held me up during life's difficulties. Most of all, it was Mary who showed me that no matter what, a kind word, a cup of tea and a bit of food can wash away a mountain of problems - that's the sign, to me, of a faith-filled person. No words of preaching, no hell and damnation - just plenty of kindness that goes right along with the fingering of her rosary beads.

I've cried many times, thinking of what's ahead for Mary, and maybe more so, what's ahead for her children, who will be her caretakers. It ignites my own fears: what is that name? where did I put that? did I really say/do that?

This is the fear that accompanies all of us as we age.

Yet Alzheimers is not confined to the elderly, even though that's the usual viewpoint. A neighbor told me of their relative, who is in the beginning stages of the disease - and he's in his thirties. Once more, I was reading how scientists have discovered that a brain that looks perfectly normal one day (through scans), can have the signs of Alzheimer's the very next day.

Our lives here on earth are truly fragile.

I have an uncle - a favorite uncle, my deceased father's brother, and the only remaining sibling of either side of my parents' respective families, who is very, very ill. No matter how much I've tried to get there to visit, I haven't been able to make the (albeit short) trip to Connecticut to see him. The constant rain we have been having here in New England has caused some pretty intense pain with me, and.. sad to say, I don't have the means to get there.

Today he's ninety years old - and while, in the past few years, has survived three - yes, three - different cancers, including bone cancer (a most difficult cancer to successfully battle), his health is failing fast. My aunt is ninety-two years old, and has her grandchild and great-grandchild ("the apple of our eyes" she has told me, more than once) living with her. My Uncle Eddie is confided to a "rehab center" (a strange name, since they know there is no rehabilitation in his cards at this point).

His treatment at this facility is horrid, and my aunt is doing all she can to fight to get him home. She's hired a Personal Care Attendant who is actually now living with them, and connected with a local hospice, who will send a nurse there several times a week.

But his doctor is on the board of the rehab center there in Norwich (can we say, "conflict of interest"?), and not only are they insisting on keeping him them there, but since his insurance has run out, they demand $9000 a month - that's NINE THOUSAND dollars - each month, for payment.

They have also told her that she has to turn her house over to them - oh, they are so kind, though. They'll let her live there until the day she dies - then this home, this home that my aunt and uncle worked so hard to pay off so many years ago, she as an elementary school teacher, he, who worked at a jewelry store in Norwich his whole life - this home which is also the home for a young mother and baby - is supposed to be turned over to these vultures.

And what does my uncle get in return for this? Well, the care is so considerate that the patients end up sitting in their own urine. My uncle fell and required stitches recently, and, as I already mentioned, his doctor, who is recommending he stay in this facility that is trying to take their only possession away from them, their home - this doctor is on board of this very same center.

How much more abuse can a facility cause before the state closes them down?

All of this makes me feel so helpless.

I don't have much, and certainly don't mind living a simple life. But times like this makes me feel so very helpless.

Getting back to my friend, Mary - I guess the worst of this will be what is ahead for her children. She doesn't know about her diagnosis. (side note: My mom had some dementia a short time before she passed away. When I realized how sick she was - she kept telling me she hadn't eaten in about three days, but told me this for longer than three days - I went against her wishes and called her doctor. Despite my telling him not to tell her I called, he did - and I related that while she was really mad, on the plus side, she forgot it by the next day).

But what Mary has is a very close relationship with God. No matter what (for as long as she remembers - and I hope this is something she'll never forget), she has a loving relationship with Jesus, with the father and Holy Spirit, and with the Blessed Mother. It gives me comfort in hoping that, even if and when she gets to the point of not being able to communicate with others around her, she'll bathe in that love, be caressed in that faith.

emma's saga

Epilepsy is an insidious disease. No wonder that throughout the ages it was believed to be the result of demons, and a reason to be burned at the stake.

Today, despite the fact that modern medicine recognizes the source to be within the workings of the brain, and while there are medications to treat the symptoms, we still do not have a cure. Once more, a treatment that may work today, could stop working tomorrow.

I can't begin to explain how stressful it is to watch a pet having a seizure. There's a level of helplessness that exceeds anything that I've ever experienced. Pretty soon, with the help of the shared knowledge on the Internet, I learned that with each seizure, Emma's brain was being trained for more. When she started having cluster seizures, I learned that this was the most dangerous - she would run the danger of going into status - that's a seizure that doesn't end, and could result in death without emergency treatment at the vet's.

I have done what countless other people in this situation are doing: I've adjusted my life in ways that I don't even think twice about.

I now clean without chemicals (countless chemicals, including bleach, can trigger or cause seizures). Emma knows my usual patterns - if I am gone away from home beyond the usual amount of time, this can trigger a seizure (she only began clustering when I started taking classes for five too-long weeks, in a city with very poor transportation - I ended up being away from home for many, many hours, something that is out-of-the norm for me.)

My bed is directly on the floor - not easy for this not-too-young gal. But her seizures nearly always occur at bedtime, and I can't even imagine how she'd injure herself if she fell from the bed during a seizure. I don't consider this to be much of a sacrifice (don't ask me first thing in the morning, though, when I need to climb up from the floor!)

Above all, our home is very peaceful. On the very unusual occasion when some discord broke the usual peace - that has triggered a seizure for my poor Emma. She is a very sensitive, gentle dog (although we changed her name when we adopted her, her original name told to us by the Human Society is still her nickname: Sweetie).

Which brings me to how much I am connected to those I love. Just as I can sense when something is wrong with one of my now-adult children, I can sense when Emma is going to have a seizure. It's a strange sensation - and a couple of times, even little Sammy gave me a warning when I wasn't paying attention (brings to mind the dogs that are trained to warn their owners of impending seizures).

I am fortunate, though. After months and months of trying to battle the invisible monster, Emma's seizures have been controlled with a very low dose of phenobarbital. She's had no seizures for almost three months - which, in epilepsy years, seems like forever.

Still, I'll jump when I hear a movement behind me as I sit at my computer. The fear of yet another seizure doesn't leave - it lessens, now that she hasn't had any seizures for awhile, but it doesn't go away.

For now, though, I'll accept the peace and celebrate the fact that my baby is seizure free!