Hello All,
Well I am honored to be adding my thoughts and experiences to this wonderful website from which I’ve drawn enlightenment, reassurance, and belonging during one of the most challenging seasons of my life. I’ve never blogged before, nor have I really followed a blog - so please handle with care!
I’m copy/pasting my introduction email below - it explains my situation and seems appropriate for a first blog. Just as I have gained strength, insight and tips/tricks from this wonderful website, I hope to return as much, or more, back.
Blessings all,
-Derek
Wed Oct 14 13:07:00 PDT 2009
Hello Everyone,My name is Derek and I just joined this group in search of a place where I might find tips and tricks in addition to the understanding that can only come from someone also experiencing or having experienced this gift of caregiving.
I work full time in IT Consulting which usually lends itself to very flexible work arrangements that include telecommuting. Unfortunately on my current assignment this is not the case, but we deal with the hand we are given, right? In addition to working full-time with a two-hour commute I am the primary caregiver to my mom and dad, one in a home the other at home with me. I have a sister who lives 300 miles away, and friends here I don’t feel comfortable talking to about this subject in great detail, nor at liberty to call on for help.
Dad
Dad suffers from dementia (Wernicke-Korsakoff) at 100% debilitation for about 5 years now. He currently resides in a memory-care only facility called Autumn Leaves in the Dallas/Fort Worth area. He has been in that facility for about 2 years now, at private pay, and his funds are about depleted to Medicaid level so I’ll be moving him soon to a nursing home. I was amazed, however, at how much nicer these facilities are than where my parents are from. Most of the time Dad still knows who we are, but like anything, he has good days and bad days. He has been on hospice now for about 8 months and while the initial shock of that was difficult, it does provide him some extra care and they pick up the extra costs for things like Depends and ‘make comfortable’ medicine. Dad is 73.Mom
Mom stays with me, although we have left her official address with their home in Oklahoma. She has been here a couple of years now as well, unable to take care of herself enough to live alone. Mom contracted Hep C from a needle stick at work which has now resolved to end-stage liver disease. She has been waiting for a liver transplant for 6 years now and at 63 is bumping up against the maximum allowable age for transplantation. We’ve actually just been advised that her status is on hold, pending application for a kidney transplant because the kidneys cannot sustain the surgery or subsequent post-op medication schedule.The doctor actually just shared his opinion that she would not receive a transplant; advising me to take her home and make her comfortable. We are proceeding, of course, as if he didn’t say that because that is unacceptable to us. They also found a tumor marker blood level (alpha-fetoprotein) jumped dramatically and that could indicate liver cancer, which is common with liver disease. An MRI was difficult because she couldn’t do the contrast, which made the test incomplete. We are currently waiting on results from a back-up Sonogram done last Saturday that was moved in from December, to next week, to last Saturday through my assertiveness and insistence that waiting was not acceptable when cancer was a possible outcome.
I have learned that You HAVE to advocate for your care recipient. If you don’t know, ask. If you are uncomfortable, say so.Mom’s care is a daily struggle, particularly because her liver failure creates a condition called hepatic encephalopathy, which is like a brain confusion. It manifests as a confused, semi-conscious, dementia-like state where motor function along with cognitive function are greatly diminished. It is a 100% hands-on dependent situation when it occurs and we are coming out of a pretty long stretch. The only treatment for this condition, caused when ammonia backs up from the liver into the blood stream and settles in the brain, is a laxative, which as you can imagine is quite difficult with someone having no coordination or physical control.
A Home Health Aid helps during the day and I have night-shift and weekends. It is challenging but rewarding and I feel honored to be doing this for her and know this is what I’m supposed to be doing. The hardest part is in the day to day challenges on top of the grief that hits me periodically as I realize we’ve lost more ground. I’ve been told, however, that grieving on the front-end is much better than afterward.
Wow – I didn’t mean to write a novel – there is just so much. I am grateful this group is out here and I listen to the podcasts on my way to/from work in the car. I often find the information entertaining and enlightening but it also provides a sense of belonging I didn’t expect – like some elitist group I’ve been introduced into. I hope I will be able to bring insight and information to the group that exceeds what I take.
Blessings,
Derek
Stop by February 5 for our Super Sunday Open House!
Hi Derek–I’m sooo glad to have you with us! I love this: “We deal with the hand we are given, right?” Sometimes, my fight against “the hand” just ends up making a tough situation worse. In any difficult situation, we have an opportunity. I want to remember it’s up to me to find it.
Hoping today is a good one for you. I’m looking for to your next post!