Sunday Stroke Survival ~ Caregiver, The Life and Times

No the time stamp isn't wrong. It is a little after 4 AM. I hear ya. "Woman, don't you ever sleep?" Here's the 411 on caregiving. Pun intended.

I'm talking about my full time job as a caregiver in the wee hours of this morning. I started earlier than expected this morning with a feeble cry from my DH, "Buddy's out!"

That was at 2:30. I'd been in a deep, hard sleep for maybe an hour and a half. Somehow how he'd gnawed his cage closure until it opened. My usual command, "Get in your pen." didn't work. He was too worked up from cavorting free with all the open space of the house, and with the cats and dogs. But no, this AM with my eyes trying to stay open, I'm corralling and coaxing him back into his cage. He finally decided he'd had enough fun  and it was time to go to his pen.  He jumped in and promptly plopped himself in a comfortable position. I fastened his cage with the first thing I could grab, two jumbo paper clamps and pushed a ladder back chair against the door for good measure.

"Take that!" I said with a sleep deprived, maniacal chuckle. My rabbit Houdini could care less at this point. I'm half heartedly afraid that he'll figure a way out. But now, my hubby is comfortably asleep and I'm semi wide awake.

I opened the pet door for the cats to do an early morning prowl and the dogs could go out if they wanted to, and grabbed a Coke Zero out of the fridge. Now I sit in front of this computer until the next round of medicine pass at 6 and 7 AM. You couldn't pay me enough to go back to sleep at this point. You see. I'm not only a caregiver for my husband but for me a stroke survivor with a terminally ill hubby, rabbit, Guinea pig, chickens, cats, dogs, garden, and life in general. AND you thought you had it rough as a caregiver. I'm a caregiver treading water...oh, I forgot to mention...I'm also a part-time caregiver for a father who has rapid onset Alzheimer.I could use a caregiver, but nobody is as good as me. Nobody would be insane enough to want my life.

I could go on and on with the multiple jobs I do as a caregiver. I have multiple posts on the subject which highlights just a glimpse into my world, BUT that's not the gist of what I want to talk about here. This is...

Hope, survival, joy, and peace of a caregiver is what I want to stress in this blog piece. These are the MasterCard "priceless" moments I get from being a caregiver.

• Nobody can do it better
• The laughter
• The companionship
• Adaptability
• Never a dull moment
• I did it THEIR way.

I say this with some shargrin, nobody can do it better than me. Sure, I can pay someone to come in and lightening the load for me...like hospice, but while they are great, fabulous, and awe inspiring they can't take the place of me. What hospice amounts to is a home based nursing home. They do their time and go home to their own lives. This is my life. Everything in my being me revolves around the personal care of the care receiver. Whether it's a hurt bird that my cats bring me, any messes that are created, or anything I attempt. Will it get done by someone else, yes it can, but not with the passion I bring. The motivation is different. Theirs is a job, but with me it's life. Life is priceless.

The laughter of that entity is what I miss the most and often talk about afterwards. Whether they've caused the laughter or it's shared. If you cannot laugh at yourself, you are a mightily sad person. Like the picture says, "Laughter is the best medicine." How many times while interviewing a family before a funeral has someone broke out in laughter. Each and every time. Someone will recount some antic, story, or quirk of the dearly departed that causes a chuckle or two. I wouldn't miss it for the world.

The sharing of laughter is a priceless gift. Laughter even through tears brings joy in the remembrance.

The companionship is based on trust. Whether it's talking about what to have for dinner or final wishes.  Whether it's just talking to a dumb animal who may or may not understand a word that you are saying, or snuggling up to your beloved. Buddy has picked up the habit when he sees me coming of jumping into his litter box, and then hopping to the cage door sticking his nose through the cage openings. When I open his cage, my knee partially blocks the opening and he'll give it oh-so-soft bunny kisses. There is another form of companionship. One of the cats will form circle eights around your legs, or a dog will curling up at your feet barely touching your shoes. All of this is priceless.

Constantly being adaptable to most is a major headache, but to me it brings joy. I never forget to look for the good in spite of the bad. Being adaptable allows you to see the beauty around you. Yes, it's hard to seek beauty when changing an adult diaper, but noticing clear, unbroken skin where a pressure sore once was is reward enough. Stopping in cleaning dishes and peering out the window at the neighbor's child as he examines an ant hill. Allowing for change for there will always be changes. Rolling with what comes and finding the joy in it is probably the hardest thing to do. But when you adapt it's priceless.

There is never a dull moment around this house. Something is always happening. Whether it's a rabbit getting out of his cage in the wee hours, power failures, too much rain, falls, chaos, and mayhem. If it can happen, it will happen in my house. Sure other people have stuff happen in their houses, but coming to my house is a vacation to them. They leave thinking, "I'm glad this wasn't my lot in life."

That's okay. I'm happy and I'll never be bored. I've always been a proactive, grab-the-bull-by-the-horns type of person. Maybe that's why I'm a Taurus. Other people's lives seem so boring to me. I strive for interaction. I've got it in spades and it's priceless.

The best thing about being a caregiver is that I'm giving someone else THEIR way. It's the most priceless gift of all. I've been a caregiver in one shape or form or another my whole life and too numerous to count.

Having the responsibility of the whole caregiving lifestyles can be daunting at times, but brings you immeasurable returns in enriching your life. You get to experience the joys, heartaches, and be a part of someone's life in a way no other has a chance to. To give of yourself. To be the best of yourself. And it's an act of selflessness unsurpassed by none short of dying. It's cost is almost nil except for time, but the whole experience is priceless.

There comes an inner peace of giving it all. Similar to a marathon runner who crosses the finish line at the end of the race. It proves over and over again that you can survive against the odds. There is satisfaction in knowing your have given comfort until the end and it was a job well done. It may not have been pretty in the doing, but it's gorgeous when complete.

Would I swap lives with someone else and see how the other half lives? Not a chance. I could have run and hidden away when the caregiving opportunities arose, but I have found more about myself and what I am capable of being a caregiver. A view most people only dream of.

Even as a stroke survivor, I'm challenging myself daily doing most of what needs to be done as a caregiver. Some things fall through the cracks like vacuuming or dusting, but I'm there in the moment pushing the limits that I might not have done otherwise if I didn't have to. But therein lies an added benefit for me in the future...I'm doing it.

Nothing is impossible with determination.

Sunday Stroke Survival~ Social Media

Why as a stroke survivor or caregiver for a stroke survivor should you Tweet, pin, Facebook, or blog? For a few very good reasons

• You don't stuff your feelings
• You find out you are not alone
• Get and share information
• At least I don't have it as bad as the other guy

These are just a couple reasons. Nobody knows the challenges I go through on a daily basis as someone who's walked in my shoes. They might not have had as devastating, or easy of a time with their stroke but they know or can relate to some of them.

It is so easy to think, as a survivor or caregiver, and stuff all the negative feelings. Be warned, doing this only hurts you and those around you. By saying you are having a bad day acknowledges those feelings to anyone that will listen. I've had my share over the past year and a half. If I had stuffed those feelings, I'd be in sorry shape about now both as a stroke survivor and a caregiver. I'd be ready for the closest mental hospital and consider it a fun vacation! 
 
If I post "having a bad day" on facebook, or twitter, myspace, or any of the forums, or blogs that I write, I guarantee there will be at least ten emails or telephone calls from "friends" or family  that want to know what's wrong. That doesn't include comments. I put friends in parentheses because these are cyber friends. People I have never met in person who are closer to me than some my local face-to-face friends. You all know who you are.

Sometimes you don't want to feel Abby Normal. Like you are the only one who is going through this. It is so easy to believe you are. A good portion of my day is spent on the internet for that very reason. Isolation is killer when you are disabled or the primary caregiver for someone chronically ill. As a stroke survivor we are chronically ill. Although in various stages of recovery, we are still not the same as we used to be. You are going to vent about injustices, balk at the way your life has changed, and share progress you've made. Misery loves company doesn't it? Conversely, have you ever had good news that you wanted the whole world to know? This is it! It's not called the world wide web for nothing.

Have you ever wondered if someone has had an experience that you had? If you truly are Abby Normal? Yep, I have. The social media and websites in general are a wealth of information. If you've just had a stroke, that's probably where this is most helpful, and want to know how long am I going to be this way. You are tired of hearing the  "very stroke is different" cop out. There are survivors out there who have been where you are.  When is probably the most asked question and to be honest there is no correct answer. I wish there was. You are part of an elite club that gets 3 million new members a year worldwide...the strokees or stroke survivors. Congratulations! You could be part of the third who have a stroke and don't survive. Believe me when I say I don't always think that I'm so lucky to have survived. You are not alone in feeling that way.

As you find others like you, who are a survivors too, you share experiences conquests, joys, disappointments, and information about being a survivor. Others want to read about these experiences to feel they are not alone. As you age in your survival, you provide a feedback source for someone newer to the club than you are even if they never comment.

I reach caregivers and survivors alike because I wear both hats. There not a week that goes by when a certain someone, Barb, who emails me just to check up on me. She along with Dean, John, Amy, and a long list of fellow strokees that become in some ways closer than family. They know you are struggling and care enough to send words of encouragement or to realize that life is dishing out too much for me to handle again.

I blog about what is going on because I can. I answer all my own emails still. I can't afford a personal assistant on my writer's income. Well, I could but I'd lose that personal touch I value so much. As an author I write and every experience is grist for the writing mill. Not everyone would be comfortable with airing their personal life, but I look at it as a way to measure how far I've come.  I'm a public figure anyhow. To me this is just journaling my journey. Instead of writing in diaries as I did so many years ago, I do it here. No, not everything appears here because I do also have a private side too.

By reading and socializing with others, your life is put into perspective. Things can always be worse no matter how bad they are. I know, I know. This is not ideal, but somehow knowing that someone somewhere has it worse than you makes you feel better. As humans we are competitive creatures at best. You can look at someone else and "there but by the Grace of God go I." There will always be someone worse off than you. You could be me or I could be Sarah (no not you). She's a single mom has no arms and one leg. She also has three children under the age of ten. To me, that would so much worse off than me.

Yeah, it's a reality check or wake up call. My stroke wasn't as bad as Diane's husband. I can walk after a fashion. I haven't had body part amputated because of contractures (knocking my wooden head). I am able to speak more than a few words. I don't have to use a catheter and diapers full time. Yes, by comparison, I am very lucky. As a caregiver we face equal challenges with our respective husbands. The major difference is Diane is not paralyze on one side like I am. Reading my blog she gains a new perspective- as I do reading hers about her husband's stroke and his struggle to be normal. So in turn I'm luckier and worse off than them.

I noticed last month one of the ezines (internet magazines) I republish to jumped on the twitter and facebook bandwagon...finally. Though I do not tweet or hang out on twitter anymore, it is a fast way to get snippets out about stroke info available. My screen scrolls too fast for me to read and respond. Something is definitely wrong with the connection between my eyes and brain since my stroke...it makes me dizzy and out of control, whereas before my stroke I almost lived there.  

My new love is youtube and pinterest. I can scroll at my speed. Although I've had a youtube channel for some time now, I never fully appreciated it's value until recently. Pinterest is also a new/old thing for me. Whether it's to find something that might help make life easier on me or to share something that helps and may help others. I post items that interest me or helps me write my books as reference. Pinterest is actually a pretty neat spot for visual interests. I learned to knit again using youtube. I can also grow my own food for my rabbits and chickens for less than a quarter of the monthly bill thanks to youtube. Reading too much really tires my brain these days so the 5-10 minute videos fit the bill.

So what does social media offer for the stroke survivor? You become mentally grounded. You are not alone. With networking, you get and share information. And finally, you really don't have it as bad as the other guy. Won't you join us? Blog, tweet, or facebook your stroke today. You and someone else may appreciate that you did. Too shy to put your footprint in the cyber world? Follow multiple blogs. You may not agree with everything being said nor even comment, but be enlightened. No one can do it for you.

Nothing is impossible with determination.

Sunday Stroke Survivor ~ Caregivers- the Unsung Heroes

In the past I've  blogged about caregivers. This makes the 10th post regarding caregiving. They are the unsung heroes in a person in need's life. Yes, I'm a caregiver, but I'm also a stroke survivor.

They are often taken for granted just because they are there. Everyone depends on them- doctors, nurses, rehab therapists, and a host of others not to mention the person they are taking care of. No one really gives them a second thought most times. This is a mistake.

Take a look at any caregiver site online. There are tons of them. Recently I was contacted by Cameron Von St. James. He runs a caregiver site for Mesothelioma group. He googled "Caregiver" and read my posts. He's one of hundreds of thousands of caregivers searching for ways to be a better caregiver for their loved ones. See we do more than give care. We research. We talk to others. We talk to anyone and everyone to find answers.

Before my husband was diagnosed with his cancer I was searching for what his ailment could be because the symptoms did not add up. A relatively healthy man having two heart attacks and a stroke within six months, crazily fluctuating blood pressures and heart rates, and a host of other symptoms like blackout and seizures. I ran across a small global internet forum and spoke up. It turned out he had not only this disease but an even rarer form which metastasizes like wild fire. Of course all the doctors here were skeptical because it is so rare but I was armed with facts to back up my hypothesis and demanded investigation.

Being a forever student helps narrow the search from years of practice.

Everyone that knew my position as caregiver, over the years, told me to take care of myself too. No real thought is given on how to achieve this when we are on-call 365/7/24. My flippant answer was "Of course, because who is left to care for me." More truthful words were never spoken. I suffered a heart attack which I lived through but it damaged my heart irrevocably, but still I was the caregiver.

Now I've suffered and survived a stroke, but still I'm the caregiver. During my hospitalization others stepped forward to care for my husband because I was away. My rehab point of view was what did I need to continue being the caregiver that spurned me forward. I needed to walk. I needed to give injections. I needed to read lips because my hearing impaired husband read them. I accomplished it all in a short period of time.

What did all of this cost me? Nothing really. I would have had to relearn these things anyhow. Now I didn't do it alone upon returning home. I depended heavily on my children and even my husband to his detriment. He's a caregiver and protector to his core.

I started seeing what this effort was causing my caregivers. Caregiving has a high price to pay. My husband's downhill battle for life has deteriorated. Not that it wouldn't have anyhow, but it has happened at an alarming rate over the past year. Two out of four daughters are now divorced from their spouses. Not entirely because of their caregiver roles, but I can't help but see the strain it caused. All my children have taken the "if you need me, call" stance and I really hate to do it.

Yes, caregivers are the unsung heroes in your life. Take a moment and give them an extra hug or tell them thank you for all they do.

Nothing is impossible with determination.