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Looking Back or The Countdown


RLT

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I am in the midst of my annual count down. This year it goes something like, seven years ago I…. I don’t quite know why I torture myself this way year after year. Some years it really does not bother me too much and I have actually thought I was coming to grips with post-stroke life some years. I guess because of all the difficulties over the last few months I am feeling the countdown more keenly.

 

Seven years ago the beginning of October, Dick and I headed south in our 40 foot motor home. Our first destination was the manufacturers repair bay in northern Alabama. Tiffin has a campground on a nearby abandoned airstrip where proud owners of Tiffin RVs gather in clusters swapping travel stories and sharing upgrades being made to their homes on wheels. We were there for three weeks having a custom dining table, lighting and travertine back splashes installed. By this time we had taken the interior of our home far from the cookie cutter design and were quite proud of how it all worked out.

 

The day before Halloween we pulled into Brownsville, TX, which was to be our winter home. That night we helped throw a party. After all our purpose that year was to coordinate and execute all the parties and dinners for that seasons “winter Texans” (snowbirds in the rest of the south!) I spent hours on our patio cross-stitching Christmas gifts in shorts and bare feet listening to the great grackles mimic the raspy sounds made by the palm trees as wind blew through them. By Thanksgiving many more coaches, fifth-wheels and trailers had steadily arrived and Dick and I gathered many willing hands to help prepare a turkey dinner for the entire campground. We had at least one event each week from German meals to shrimp fries but our largest dinner was Christmas when we served over 120 new friends who had travelled from as far as Canada to avoid snow. That morning was the first time in recorded history Brownsville saw snow!

 

Dick and I were in our element. Dick was always the outgoing one who never knew a stranger but that year even I was known by everyone. After all people always love the ones who feed them! It was a magical time and we were so happy. But I guess I should have known by New Years Eve that something was about to destroy it all. Dick and I tended bar, which was simply putting a rationed amount of spirits in plastic glasses (park owners tried to keep expenses down!) and allowing everyone else add their own mixers. Leaving Dick and I plenty of time to dance around the kitchen and mingle. But Dick was off that night. We actually quarreled which was not like us. At one point a dear friend stole me in apron from the kitchen against my protestations for a dance on the dance floor. It made Dick mad. Huh? I couldn’t figure that one out.

 

Two evenings later we were all snuggled together watching TV. The next day was to be my daughter’s last day with us and we planned to take her to the beach. I got up to get ready for bed in the back of the coach and Dick got up to get OJ to take his evening meds. Two minutes later I found him fumbling trying to open the refrigerator. I don’t know how I knew but I did. Dick was having a stroke. And that was the end of the magic. He was just pulling through the first stroke earlier the next morning and regaining his speech when the second stroke hit. Later the CTs revealed that he had had an earlier infarction as well. I then knew why Dick had not acted himself.

 

Every year I relive those months; the good and the bad. Sometimes my heart yearns painfully for those days of busy bliss. Other times I am so grateful that I have such rich memories. I cannot forget my New Year’s dance partner and dozens of other people who held me up through the next few months of hospitals and rehab; people who left post-it notes on the door of the motor home; people who took in my daughter in and provided transportation for her; people who later would respond to a scream out the window for help lifting Dick when he had fallen trying to get up; people who watched Dick while I cried on another’s shoulder; people who pureed food and froze it in ice cube trays creating instant meals as Dick learned to eat again. These were people who seven years ago I had only just gotten to know but they were true friends.

 

It is understandable I guess that I should feel the countdown so keenly this year. Since I have been ill I have been lucky to see Dick maybe once a week. I cannot drive. I cannot walk the long hallway to his room. My Dick is long gone but the person he is now I love tremendously and I want to be with him. And I am alone. I have my daughters and my parents; all of whom I must care for I varying degrees but no friends. Who has the ability to create social networks in a new state when your whole life revolves around caring for a spouse now dealing with vascular dementia? Certainly I have more time to myself now that Dick is in the nursing home. But, I was worn down by the time he got there and most of the time that I have free my health limits me. And frankly I don’t know how to get out there anymore. The activities that once were so enjoyable are no longer relevant. My square dance partner is gone; I no longer home school my kids; my computer skills are a decade behind.

 

It can be tempting to long for those magical days seven years ago but I don’t really. They had a dreadful ending which I would not wish to go through again. I am grown from the person I was back then. I understand so much more. You simply cannot go backwards. But I can remember.

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I just read your blog and can understand how you must feel when you lose a mate. I'm about a few months to a year in front of you with the stroke recovery process. Mine was 15 Jan 2004 so this coming January is 8 years which feel and seems like a whole life time to me.

 

I have gone through so much and been in so many rehabs and therapy clinics I don't know what to do with myself.

 

I can only wish the best in health and life since your mate is in a home. I know the feelings and I'm wishing his condition can level out and not get any worse. I know nothing about that condition but know different people who is suffering with it. It has to be hard on them and loved ones alike. I wish all the best for you and Dick.

Fred!

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Ruth, I am often where you are now. I am still not recociled to the fact that Ray is in a nursing home and I cannot bring him home. I am still getting used to going in there with my "smiley face" on and being bright and breezy with the staff and taking him out into the sunlight etc.

 

I still wake up from where I fell into an exhausted sleep still crying over the fact that I cannot bring him home again because he cannot stand up and hold his own weight, cannot walk, cannot....so many things. And I know this is our new reality and I have to accept that.

 

Thank you for telling your story, mine is different, but the initial strokes in 1999, for Ray as for Dick came out of a very busy period in our lives and changed the man Ray was into one almost totally dependent. We two are among the fore runners of those who will have to put their care recipient into a SNF or nursing home and just visit and cry and be on their own. It is not easy out in front alone is it?

 

I have been able to go on with some of my activities but life is very hollow now.

 

(((hugs))) from Sue.

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Ruth: as painful as this time of year is for you, I thank you for sharing. Mostly I try not to think much more ahead than a year. Just too scary and painful.

 

I hope you are taking care to regain some of your health and while, yes, I know the holidays are certainly different, am hopeful that you will be able to enjoy them and see your Dick and hold him tight.

 

Know I am thinking of you both. Debbie

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The one thing that Dick lost in his initial strokes was his drive. I admire those like Fred, who have worked so hard. I guess the reason I have hung onto the edges here has been the hope that someone else may get some insite or encouragement from what we have experienced. Yes, it is difficult to be on that front line. There is a whole new level of emotions and difficulties that come when your loved one must leave home. Especially so when he or she has dementia when the hope you have of improvement from stroke is overshadowed by the hopelessness of a disease that can only get worse. I love to help other caregivers but still desire the understanding of people who understand where I am now.

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And Ruth, I can not go there with you. So few here can. We can learn from you and that will help any of us who find ourselves in yours and Dick's situation.

 

I watched a couple at Bruce's Rehab. The husband came every day. The wife, a stroke and dementia victim cried all day long. He would take her for walks, made sure he had her favorite stuffed animal, her favorite afghan. He took her to all the recreational activities. Stroked her arm, coo'd to her. And then she would smile. She knew he was there. He'd smile over at me and then we would both cry and go get a coffee, leaving our charges with aides for a bit.

 

I could be there for him, as I can for you and Sue. But there is nothing I can say or do except to acknowledge your pain and loneliness.

 

I do know that you can say, as difficult as it was for me, I was able to get beyond that and at least help some others. For that alone I know Dick is very proud of you and honored to be your husband and partner. And no one can tell me any different. Good week. I am so happy you finally are back in a car, a bit of control returned-lol. Debbie

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Guest hostwill

Posted

A LOT OF GOOD THERAPY IN THESE BLOGS, WE ARE INDEED "FAMILY" AND KNOW HOW TO SUPPORT ONE ANOTHER. NEVER GIVE UP! RESEARCH IS FINDING OUT NEW THINGS ABOUT STROKE ALL THE TIME.

-WILL

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