While in Calistoga, My friend Sandra the writer and I spoke about my blog and potential future topics to blog about. She said and I agree: “People like lists.” So, this is the genesis of this blog. We will likely do the same on the caregiver side in the future.
Other possible lists will include:
· Top emotional changes you will experience
· Top threats to marriage
· Top things to do to stay in shape
· Top things you can do cognitively
Here are top things (5 so far) that suck about living with a stroke and what I can do about it. (In priority order)
1. Not being able to drive:
For 32 years I could jump in a car and go wherever I wanted, whenever I wanted. I have something called left-side neglect which means I have zero peripheral vision on my left side. Driving would be lethal for me and for anyone in the vicinity of me.
To have this freedom taken away is indescribable. It is a jolt to have this taken away. I cannot run a last minute errand. If I’m cooking and forgot an ingredient, I generally have to abandon the effort. Instant example: My friends just called from Barton Springs. Had I been able to drive I’d have been out the door.
Bob is totally patient about helping me to learn again. He will let me drive on short trips to the store if it is early and no traffic, while I’m driving; he generally has one hand ready to grab the wheel and one ready to grab the brake. We made a deal, if I could make 10 trips with zero errors, perhaps we could venture away from these short trips. I have not been successful, nor have we really practiced in months. It tends to get to the bottom of the priority stack. I’m ok with this because it is absolutely no fun for Bob. So I counter this by having access to 4 -5 driving assistants during the week.
2. Not having a job and earning an income. I started working at 15 and had a job even before I graduated from college. I love to work and always felt satisfied that contributed to our household income. This is gone. My sense of self-worth is low. My father taught all six of his daughters to always be independent as you may be on your own. So be sure and earn as if that is the case. Bob works hard to keep me in the lifestyle I am accustomed. This leads to guilt. He put his life on hold for the first 3 of my 5-yr. rehab plan to stay home and take care of me. When I first came home. Bob literally could not leave me alone for 5 minutes. It wasn’t until relearning how to walk, eat, cook, get in and out of bed etc. It took about a year for Bob to be able to leave and run errands.
Thanks to my sister, Theresa, I became involved with D.A.R.S. which stands for Department and Rehabilitative Services. DARS’ role is to help disabled people get back in the work force. Over the last 3 years through DARS funded the following activities:
- Administered a $6,000 neuro/psych test to get a baseline of my post-stroke cognitive ability. The outcome of the test leads to a list of recommended activities to address your deficits. I have been conducting the following activities since the test Also funded by DARS:
- Attended a 2-day skills workshop
- Attended 3 semesters at UT speech and hearing to address my cognitive deficits such as:
o Vocal prosody
o Left-side neglect
o Short-term memory
o Spatial skills limitations
As you can see, I had a lot to work on before I could go back to work. Through UT Speech and Hearing, I worked 2 volunteer jobs during the semester sessions as well as participating in the local Toastmasters club, I am addressing my deficits. I still have a long way to go before I can fully reenter the work force so for now I consult on marketing projects. It works for me since I cannot drive. Remember the mantra: revel in the things you can do.
Here is the rest of the list but since this is getting too long, I will address these areas in a subsequent blog.
3. The lack of intimacy in my marriage:
4. Not being able to wear regular shoes or high heels:
5. Always having to rely on others:
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