When visiting family I find that it's always hard to say goobye since we are far away and we are big time cryers. Specially this time because I gave a final goodbye to one my sisters. She is the second oldest of my siblings and has Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease. This disease attacks the nerve cells in the brain and spinal cord that send messages to the muscles controlling voluntary movements in our body, since the muscles are not moving, they start shrinking (all of the them) with the exception of the eye muscles, which she still has full movement and control of. Life expectancy is 2-5 years, even though few may live to 8 years or beyond. She was officially diagnosed in September of 2009.
There is no cure for ALS, only a very very expense drug that can slow the progression and give maybe an extra 3 months to live but not guarranteed, she opted not to take it nor go to a nursing home, she does have hospice care and now a full-time nurse during the night.
This is emotionally draining for her and who surround her. It is very hard seeing someone you love in pain, and not be able to do anything about it. My sister survived many years in an abusive marriage, raising 5 kids. After she divorced she went to school and bought her own home. She loved gardening, and now can't get her hands dirty planting flowers, DIY projects and complain about a splinter when building something, something she's had a taste for but can't chew, she can't bend over to pick up a crumb from the floor (what can I say we all have a bit of OCD), she can't even scrath her own nose or sometimes lift her own head without help.
How can I call and tell her about my day, or how exhausted I am because I just finished cleaning, or that I have a headache or what I made for dinner when she now has a hard time swallowing something as simple as jello, everything has to be liquified for her, not only is it hard to swallow but exhausting for her too. It is even getting difficult understanding her when she talks.
I pray for her every day, at the begining it was hoping that the doctors where wrong and it wasn't ALS but something that could be cured with surgery or therapy. Once fully diagnosed praying that she wouldn't get depressed and enjoy the time she had left, and now I just pray she will be at peace and won't feel scared the moment she dies.
I promise my next post will be something crafty, maybe.