I have not written a blog entry in 11 months. I was unsure if I should keep going or not. It does not have to do with a small following or popularity it had to do with do I have anything more to say. Here I am so I guess I do.
I realized recently that as we are coming up on 4 years since the day my husband had a stroke, I am just now understanding, making decisions and coming to grip with some of the impacts of the stroke.
I disabled my VBRO (Vacation Bedroom Rentals) account because I know I am not taking those trips. We are not going to those Georgia Mountains. We are not going to Yellowstone or any of the other places. The facts are those type of trips will be too hard on my husband. The confusion, the discomfort, the anxiety he feels or experiences when out of the normal routine and familiar surroundings are not worth it. How can they be enjoyed at his expense? It only took me almost 4 years. I stopped because it was self-inflicted pain.
Thank goodness we can travel to Mississippi to see the grandkids because that is familiar and simple.
I tried joining an online Aphasia support group, but do not have much time to participate.
I have felt jealously at what I thought were normal lives being lived around me.
The continued “Hard” conversations are emotionally draining and sometimes I wonder can I keep up with his needs. The latest of one was one we have had before where he correlates his physical fitness with the ability to speak, remember things and understand the world around him. So, I had to remind him your brain was actually damaged, the part that holds your language and now you have to find your words from another part of your brain. He cries, how can you love someone like me? He asks. How can I not love someone who suffered a terrible blow in the prime of their retirement? Who has never stopped working on getting better? I remind him of all the things he can do and where he came from, brain bleeding for 48 hours, complete paralysis on his right side. Doctors asking me to sign a DNR.
The road is long and always will be for him. He tells me I don’t want to live if I cannot do things for myself and in the same breath says I will not stop fighting. All of those words came out clearly.
I have to think if he can do it then so can I. I can keep putting the socks on, shaving the face. I can stop getting scared when he suddenly forgets how to comb his hair or how to swallow his medicine. I can figure out different ways to describe things until he understands. I won’t leave his side until I figure out what he wants to watch on TV. I can continue to unwrap his protein bars.
I can take joy in his life, because he does take joy and pride in what he does. Just because there is a component of the emotional rollercoaster that goes along with stroke and brain damage doesn’t mean he dwells on it and neither will I.
I may still cry on certain days and mourn what our life should have been at this stage, and I think that is ok too.
The joy is provided by his life continuing, just like the Lord promised me when I entered that ER on Oct 27, 2017.
How to love, laugh and live with a Stroke 
Keep writing, there are so many people out there who can benefit from all of your experiences. Doctor’s do not tell you everything, sometimes the truth is learned the hard way.
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Thank you Lana for your encouragement
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Diane,
As I’m sure you ARE already aware, there are many of us just a phone call away during these most difficult and trying times. I know you feel time may not permit it, but you HAVE TO MAKE ThAT TIME for YOU! In the long -run, it results in getting through just another day; or just another set-back!
Furthermore, if/when you have something to say, please continue to say it! You are touching/changing lives although you may never know the namesI i for one however, can attest to the strength, reminders and comfort your posts have brought me over the past 4 years.
Thank you for putting pen to paper again! I am coming up on the one year Anniversary of my Dad’s passing (8/17/20). Although not your intent, this spoke clearly to me and the changes I’ve had to undergo/endure over the past year having been his caregiver for over 12 years. In the end, the dementia was something for which I alone found myself unprepared! But you know what? We got through it!!! “Chris”, Dad’s “hired” caregiver (me) was “fired” almost daily and my Sister called to have me removed from the home. The phones had to be removed due to 911 calls and him giving out his personal information, as did his computer. So we began “puzzling”; a series of 15 Thomas Kincaid puzzles. Each one with more pieces than the last. He really could only group pieces by color but we spent countless hours together “puzzling”! I have one finished puzzle framed, hung and lit, with a placard stating, “Pa Pa’s ‘Going Puzzling”. This is what he’d say when asked, “Where are you going Dad” when headed toward the front door!
Are our stories the same? Absolutely not! Have we both experienced change, normalcy, loss, anger, jealousy, hopelessness and fear? Absolutely, “YES”! So thank you for being so honest with something many would chose to keep private! You have made a difference; even today as I so very much needed this! ❤️
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