June 12, 2008

Summer In Caregiverville

The days of June have blended one into another. Finally some warm days to alternate with the rain we've been getting have come to our corner of the world. The beginning of summer, for us, is marked by the first of the Blues in the Park series and by the start-up date for the Farmer's Market both of which happened this week. Summer is here and we don't even have plans beyond attending these two weekly events, raising a good puppy and contracting to have a couple of rooms painted. I should plan something beyond the normal rhythms of summer but between the cost of gas and the cost of getting older I don't seem to have the desire to seek out any more fun under the summer sun. We'll probably throw in a couple of art shows, a small town fair or two and call it good enough.

The new puppy, Levi, sounds like a herd of buffalo thundering across the carpeting as I write this morning. He litters our house with a dozen stuffed toys plus chew sticks and three balls. Several times a day I pick them all up and put them in his toy box in the kitchen and after nap times he gets them all back out again. Even Don is getting more puppy related exercise. As he makes his way across the floor in his wheelchair he's learned how to kick and pick the toys out of his path. Annoying as that must be for someone in a wheelchair, the puppy has been worth the effort. Don and Levi have already become barking buddies, much to my displeasure. The puppy is a schnauzer, a breed given to barking too much if you don't nip it in the bud. But what are you going to do with a guy with very little language at his disposal who enjoys interacting with the dog in their little joyful bark-offs? You make a half-hearted attempt to discourage the barking but you know that neither dog nor man will listen. I bond with Levi through training, exercise and feeding. Barking like two wolves in the wild is their bonding thing.

So I work at training Don not to bark at Levi when he's in the middle of transferring in or out of his wheelchair for fear the dog will bounce on him and push him over. It seemed to be Levi's favorite time to start their barking ritual. It's likes he's saying, "Hey, you're on your feet anyway. Come play with me." We've worked so hard at getting Don's transfers strong, dependable and independent again. Since last fall, really, and now that we've been going to the YMCA and working out, his transfers have finally become all three of those things and if not for the puppy I wouldn't STILL be on stand-by duty during transfer times. Life is full of ironies, isn't it? ©



BookingAlong said...

Life is indeed full of ironies. I am glad it is Friday, a light rain is falling and one member of the family, prone to Alzheimers, is now back from Colorado. Although accompanied by a caregiver to hear a vintage band performance, I did worry that she might veer left at the airport while the assistant veered right - and then who knows where she'd end up? But that was probably just guilt from not going along on that trip myself. Your pup looks full of pep and cuteness :)

Jellen said...

The visual you draw is hilarious. I can picture the barking happening. Now when the barks take on their own language, that's when you need to listen. Could be they are planning something that might involve you.

Who knows? Maybe Don will find expression in the variety of tones he uses to bark. Maybe there is a whole language being spoken around you, and not just barking entertainment.

Anonymous said...

I’m sad that I haven’t visited your blog for sometime. Your thoughts, penned with such great emotion and immeasurable skill, are very touching to read. I think writing them must be very therapeutic for you. They certainly put a new perspective on the problems that arise for the caregiver of a stroke victim. It takes me back to a time long ago…..more than 35 years…when my father suffered a stroke as well. He was able to walk but never regained the use of his speech. I remember him saying over and over, “I can’t talk. I can’t talk.” The simplest sentences were impossible for him and it frustrated him to no end. He was no longer able to engage in his favorite pastime of golfing and thank God he was no longer able to frequent the bars he spent so much time in before his stroke. My Mother, who really never had a loving relationship with him, nursed him until he died 3 ½ years later.

In recent years, we had a very good friend who was stricken with Sleeping Sickness Encephalitis. His wife was unsure if he would survive the attack, as he was also suffering from Leukemia, skin cancer, sugar diabetes, sleep apnea and high blood pressure. He had the encephalitis attack in 2003 and survived it. After being out of his head for about 2 months, he emerged, from the sleeping part of it, in a state that resembled that of a stroke victim. His brain swelled causing much damage. He was unable to walk and pretty much unable to speak as well. The doctors told her that any recovery his body would achieve would happen in the first year. Imagine the despair he must have felt, when after that first year there was little improvement. He was a dairy farmer used to very hard work and little time for sitting around thinking about it. He did attend therapy sessions which helped with the speech somewhat. If he took his time speaking, and you listened very carefully, you might be able to pick out some of his words. His wife was able to understand him much better and if she was around to “interpret”, conversations were easier to keep going. I felt very embarrassed when he would speak to me and I was unable to pick out more than 2 words, completely missing the thread of the conversation. I hated to keep asking him to repeat, as the more excited he got, the worse his speech got. He must have felt trapped in that body…...a body that didn’t respond to his brain and was unable to vocalize the words and stories residing on his brain’s hard drive. We never heard him say “why me?”….he seemed to accept his state of health…..although he was not a particularly cheerful patient.

After partially winning the encephalitis battle and coping with the Leukemia for 7 years, the disease morphed into Lymphoma and he was unable to fight it. He died on June 21, 2008….he was 65 years old. His battle is over but your battle and your husband’s battle is still being fought. I am sure that he must feel the same way as the other Don (yes, the farmer had the same name), struggling to cope with a body that doesn’t respond and a voice he no longer has. And of course you, being the caregiver, are left to put your feelings, trials and tribulations on paper (or in the world of 2008, a computer, a blog, the internet) hoping to reach others who are sharing the same challenges. I am sure that you are helping others cope or at least offering them an outlet to see that they are not alone and offering them resources to help overcome some of the challenges they face.

Shouldn’t your retirement years be happy times? I guess not everyone can have carefree years to enjoy in retirement…not everyone has their health. And many of us, me included, take that good health for granted….I know I shouldn’t. And now that you have suffered through this lengthy comment, please keep writing….I hope I remember to keep returning to read more of your thoughts.

Dewey Dewster’s Gram

Anonymous said...

While taking the dogs for a long evening walk, I thought to myself, "Self, did you write that Don, the farmer, died on June 21, 2008?" "I think I did", I answered...how silly of me since June 21, 2008 has not yet arrived. Don died on May 21, 2008....almost a month now. See what happens when you only proof read something 10 times instead of 20?

Dewey Dewster's Gram

The Aphasia Decoder.... said...

Dewey's Gram,

Your friend's story is very sad. I'm sorry for your loss. It's not easy watching close friends go through so much.

Blogging for me is therapeutic as you guessed. I love doing it and, believe it or not, Don and I do have more happy times than anything else. I try to live in the moment and not borrow trouble from the future. I could drive myself crazy if I did that. For now, we're doing good.

Thanks for sharing your story....


QVC said...

well life is full of ironies