IntrinsicTina

Make no mistake, a nursing home is a tough place to be. Most of us do not plan to be here. It may never even enter our minds. I was wondering if we would have to put my mother in a home. But I surely did not figure I would be in one. I've had very little experience with death and dying. Ours was not a close-knit family therefore we did not see the natural progression of life through the aging process to the inevitability of death. .Grieving was limited to the loss of friendships and the parting of my beloved grandparents after summer vacation. As a military family, we moved often and without warning thanks to parents who thought it easier to spring the upheavals upon us. I came to believe that all connections to people were temporary and short term. As a result, I was ill-prepared to deal with death as an adult. Nor was I much good at building long-term relationships. At the nursing home, there is much death to deal with. In my eight months here, I have lost many acquaintances...

On Friday, August 22nd myself and 21 of my extended family and friends at Life Care Center of Federal Way did the #icebucketchallenge for ALS. We were blessed with news coverage when the local newspaper, the Federal Way Mirror showed up. Many of the employees and friends chose to participate and donate to find a cure. It was an exciting event and it felt good to be taking part in such a great cause.

I've told tales about how my family abandoned me in my hour of need. Unfortunately, they are true. However, I think it's important to let you hear about what my family had to endure as we went down the rabbit hole of fast-progressing ALS with a side of FTD (frontotemporal disease). It must have been June 2013 that I last felt relatively normal. My father, stepmother, and stepbrother came out from  Ohio for a visit. I was using a manual wheelchair but able to self-transfer. I thought I was handling life's challenges well. Although, I was blithely cutting people out of my life for what I percieved as grave infractions. First to be cut was my sister, the one related by blood and closest in age to me. She and I have always had very different personalities and have clashed many times on a variety of subjects. This time it was following a shared vacation to Maui. I'm an avid photographer and took many photos despite failing strength and coordination in my arms, hands, wri...

.Have you heard of Ice Bucket challenge? It is an activity that somebody started to promote  ALS awareness and to challenge friends and family to contribute monetary donations to help fund research to find a cure for ALS. Well, it appears to have taken off like wildfire, or should I say, gone viral, through social media thanks to Facebook and Twitter. And most recently, thanks to celebrities, sports figures and teams, musicians,.Local news teams, major networks, etc. This is such a boon to the ALS community! We need the exposure so desperately. This disease not only devastates the sufferer physically, but emotionally, and financially as well. Generally the sufferer declines so rapidly, family and friends have trouble keeping up with the changes. Charitable contributions most often go to higher profile diseases who are also deserving, but ALS has no treatment nor cure. Only a series of unrelenting declines. ALS is considered a relatively rare disease as 30,000 people in the U.S. A...

I have found my "voice" and I refuse to be silenced. Paradoxically, it took losing my voice to the ravages of Lou Gehrig's Disease to find my writer's voice. I started my blog in 2010 and never really knew what to write about. I was pent up and fearful. I was afraid that if people knew what rollled around in my brain they would not like me. Today, frankly my dear, I don't give a damn. Since the ALS, I have learned that no matter the professions of love and support, ultimately, I am alone. All the thoughts and prayers in the world, while appreciated, do not talk to me, don't read to me, don't scratch my head when it itches, don't make sure I'm not being ignored, don't get my meals ordered, nor does it hug and kiss me. I cannot tell you how many times I was assured, "I will be there for you until the end." only to look around and not find them there. I've been told countless times, "If there's anything I can do..."...

The morning brings routine. Flat on my back, raised at a 45-degree angle with a plastic mask strapped to my face providing air support and sucking all the moisture from my mouth and throat. This time I'm panicky because the mask slipped in the night and is stealing my air and blowing air into my eyes. What's more is I pressed my call button ten minutes ago and wonder how long I could survive if this had been an actual emergency. Luckily this situation is more nuisance than substance. Next comes the question of the day, "What do you want to wear today?  which gets my mental gears going. What day of the week is this? Believe it or not, it matters to me. Tuesday and Thursday bring regular visitors from my years of attending sober meetings. These are some of my truest friends and I like to look nice for them but not too dressy. Sunday I like to dress up for the Lord's day. If I have an appointment...You get the jist. Also, What's the weather going to be? Then I have ...

The mind is a wild and wonderful thing. Today a lot more goes on upstairs than people realize. Many people make the mistake that because I live in a nursing home, I must also be feeble-minded. That because I speak like a five-year-old (due to dysphasia), I must also have the intelligence of one. It's frustrating and exhausting explaining and proving myself to those around me. Particularly frustrating is repeating myself three and four and five times to people who regularly care for me. Now I am not prejudiced. On the contrary, one of the greatest benefits to being in this home is my proximity to other cultures. But the people who struggle the most with my speech and care are people who speak English as a second language.It's a challenge to come up with alternate ways to describe things that you need. Speaking of challenges, learning to use my Tobii alternate and augmentative speech (AAC) device is a doozy. I have always had a fairly easy time learning new programs and systems...