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Care Giving turned Care Living


Strokewife

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Caregiving turned Careliving

 

In the beginning, when my husband was laying in a hospital bed not showing signs of coherency I would sit holding his hand and talk to him as if nothing was out of the ordinary. It didn’t matter if he heard me or not I just believed the sound of my voice comforted him. There were many days in the beginning when he would be talking a lot of scattered things. It seemed he was dreaming, hallucinating or telling stories that only made sense to him. I contributed it to the over abundance of medication but more so it likely was the swelling on his brain from the stroke. I sat constantly watching him, the monitors, and the medical staff that entered his room routinely. I vowed I was going to get him home come Hell or high water. Not being one rehearsed with all that a stroke could do to one physically I did not look too deeply into the possibilities of additional assistance. If the truth be told, I had it in my mind that he would get up and walk out of the hospital in a few days from when he was first admitted. Simply, paralysis was not in my vocabulary.

 

Upon news that my husband would need to go to a Rehabilitation Hospital I swallowed a great deal of pride. Somehow I felt like I failed my husband. Yet, I grabbed the reins and vigorously toured the local facilities and made arrangements for him to be moved to his new home away from home. I brought things from home to decorate his room so he felt comfortable. There were documents signed and shots acquired to allow our dog visiting rites. Of course, I camped out in the evenings with him as much as I could. Gleefully, I once again cheered him on to recovery. All the while, I maintained our home, my work, and financial obligations. I researched and studied all that I could with regard to his stroke. I continually vowed I would get him home. It didn't seem right that individuals our age would live anywhere but in our own home.

 

After two months that glorious day came when my husband was released to come home. I had worked feverishly to adapt the house. Handrails were added to the bathrooms, a ramp added to the entryway, and removal of furniture to clear a pathway throughout the house. I reduced my workload so to care for my husband. I learned the ins and outs to lifting, shifting, and maneuvering my stroke survivor. I eagerly became his caregiver. It was something I wanted to do.

 

At the doorstep of a year since my husband had his stroke I realized as I routinely got up this morning to assist him to the bathroom that the eagerness I once had in cheering him on to recovery was now more like a sigh. Don’t get me wrong, I graciously help my husband with just about everything. My husband continually shows signs of improvement in his therapy. We both hold onto hope. Yet, he to date cannot do to many things without assistance. As I reflect upon my life now verses how it was before his stroke I am aware that not only did my husband's life but my life changed. While I don’t have the disability that my husband has I am his left side for most activities. I, verses hiring someone to assist him, chose to do it myself. Finances and Insurance predominately made that decision. And, as time has moved forward, I consider that I am not just care giving but more so care living. Daily, I live my life encompassed with caring for a stroke survivor. While I do not know what tomorrow will bring I feel assured that no matter how difficult today might be we are both still living…Therefore, I with that sigh I release unconsciously embrace the life of Care Living and thank God my husband is alive...

 

I am thinking about starting a movement. Who wants to join me in Care Living?

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We have all got to that stage somehere along the line where we know this is our life now...call it what you like,  I still called it caregiving as my husband continued to have strokes, seven majors and lost count of the TIAs etc and for the last two years seizures and fits.

 

BUT we did do some of the things we would have done when we retired, as many days out etc between other events like UTIs, falls and broken bones etc. We did go on some short bus tours with a local company twice a year 2002 - 2006, and then he deteriorated a little and it was holidays with the family or with help of some kind (our youngest son came with us on a couple).  Then he had a hard year at home and his last year in a nursing home.

 

Yes, you do have to normalize life and acceptance makes that easier as you soon figure out what is possible now despite the effects of the stroke.  And it is not a bad life, just a different life.

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I totally agree with Sue and have been "care living" going on 12 years now.  Reading your blog took me back to those days in the beginning when I went through so much of the same.  At some point after the first year, I knew that we had to accept the new normal and move on with what was left of life. My husband, Gary had a massive brainstem stroke 6-1-2004, still in wheelchair with right side weakness, loss of trunk control and motor control, speech difficulties, swallowing difficulties and permanent double vision.   We have traveled, wheelchair in tow, to numerous places over the past 12 years and only recently slowed down a bit because I'm not getting any younger.  We even made a major move from Colorado to Arizona four years ago to be closer to youngest grandchild.  

 

Hang in there through the tough times, and hopefully the good times will outweigh them in the long run.

 

Sarah

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My wife did that same thing for me when I came home from the hospital after a six month stay and the VA helped out with a scooter and a hospital bed which I still got at home and the WC I came home in and still got it too just in case I ever need one again.... I hope to never suffer another stroke but there is o way to know for sure.....

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hi strokewife :

 

reading your stroke reminded me of my initial months when I just came home from hospital. luckily I was in much better shape & independent than your husband, but ofcourse my family walked around me very gingerly hubby could have wrapped in cotton  & kept me rolled in bed so that I would never get hurt again. Ofcourse I fought tooth & nail to get my independence back. life became much smoother or after I started driving & doing more for our family. I feel hubby's infinite patience in allowing me to do more fr myself & our family helped all of us in long run.

 

Asha (12 year survivor)

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I remember finding this group when we were nine-months post stroke and the advice at the time was to calm down - the first year is the hardest. With a lot of hard work, endless conversations with both caregivers and our stroke victims, I made it through year one. Then came the realization that this was a very long haul.

 

I had seen the improvements - still do at year seven - but also the slow, tedious progress. And there will be road blocks ahead. Stroke always reminds us it does not rest.

 

Celebrate and take joy in survival and recovery through year one. A huge accomplishment for your whole family.

 

A thought for year two? work on your marriage. All those things you enjoyed together-laughing, enjoying nature, reading, puzzles you do together, play cards. Have him with you when you prepare meals if that was something you used to do together. A small period of time, every day, where you are just friends and partners again.

 

Debbie

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Yes, you have said it well as caregiving turns into careliving.  Larry is now in his 6th year of recovery and like you, I assist him with most everything.  He had an ischemic stroke, left side affected and cannot use his left arm or hand. He has had some big health issues lately, which I blogged about.  But I went through stroke rehab, stroke therapies, doctor appointments and tests.  It just became routine.  I do believe getting help in the home has helped me from caregiver burnout.  It is always good to have that support or back up from either friends, an agency or family.  It is so important to take care of yourself as the stress and extra duties can be so difficult to handle alone.  This board has helped me tremendously.  

 

Best wishes to you and your spouse,

 

Julie

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My children in their early twenties took care of me,evrything for the first year when docs said I would recover. It was a role reversal without any preparation for any of us. Love lead us on

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Yes, you have said it well as caregiving turns into careliving.  Larry is now in his 6th year of recovery and like you, I assist him with most everything.  He had an ischemic stroke, left side affected and cannot use his left arm or hand. He has had some big health issues lately, which I blogged about.  But I went through stroke rehab, stroke therapies, doctor appointments and tests.  It just became routine.  I do believe getting help in the home has helped me from caregiver burnout.  It is always good to have that support or back up from either friends, an agency or family.  It is so important to take care of yourself as the stress and extra duties can be so difficult to handle alone.  This board has helped me tremendously.  

 

Best wishes to you and your spouse,

 

Julie

I just happened to see your profile photo.  I am originally from Illinois and a die hard CUBS fan.  My sister always cheers for the Cardinals to keep the rivalry alive with in our family.  Thank you for your comment.  I too find this board a tremendous help.

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