Archive for caregiver

Health Tool Kit: Reliable Resources

Share

Screen Shot 2015-12-21 at 11.31.13 AMHealth Tool Kit: Reliable Resources to guide older adults to learn about medical stuff.

Doesn’t it just make sense that you would learn as much as you can about a medical concern? That information is readily available. Credible. Reliable. Current. Medical information you can trust – and your doctor should too!

Have you ever heard these exclamations by your medical practitioner? “Be careful of what you read on the internet. That’s just internet hype.  You can’t trust what you read; why do you keep researching this; you should stop researching  – it just scares people…. ”

Has the staff at your doctor’s office looked at you like you were the crazy, nagging spouse who interferes with doctor / patient discussions? Have you left a medical appointment wanting to dig deeper into understanding an illness, medication, or treatment plan?  Do you feel a nagging suspicion you can learn more about what ails you or a loved one? Read More→

Where are Your Ducks?

Share
Or Find Your Zen Mode

Get Your Ducks In a Row

Your Ducks in a Row, they taught. They admonished. They berated.
It’s like saying to someone that if you can’t be perfect, don’t come home.

Plan Your Work and Work Your Plan — I heard it repeatedly throughout my life. It was my Dad’s favorite cliche and he used to encourage his sales team, then came home and told us the same thing. Echoing in my mind, in became a core part of my life.

Yours too, I bet. Because we are taught forever that we must have a plan and we must work that plan.

Well — this article is about Ducks.  Are they really ever going to stay in that perfectly aligned row?  Read my article, and know the truth about the darned ducks.

Where Are Your Ducks

Activist in the Making – maybe

Share

The questions… all the questions that arise from a simple thought. Maybe it’s time to pick up the talking stick and fight.
I think a lot about how others deal with things I deal with.

I never planned to leave the normal workforce. I intended to create a service business that focused on providing the same great skills but eliminated the contract agencies.  That would protect me since the agencies sure didn’t. Never expected to be tottering on the cliffs of caregiving madness.

I spent some time looking for something today. A thing called a job. I still want to help others get healthy, stay healthy — but I need to recreate the vision.  There is on every application the questions: Are you a Veteran? Are you a disabled Veteran? Are you Disabled?

Um noo…. but there is no question about are you a caregiving spouse of a disabled person who is also a veteran… I suppose if they asked that question, it would become an issue as hot as women’s rights was back in the day. Women didn’t get jobs because the assumption was they would get married and have kids. The excuse was they would have to take too much time off the job. Today, the same issue is there as an undercurrent.

There really should be new laws in place that deals with issues of caregiving.

In our “its all about me and my money” society, are families prepared to deal with this? Is anyone?

Our business society doesn’t take kindly to the caring souls who choose to honor the family ties. The gap creates an opportunity. People don’t just disappear from the workforce. Often, someone has to do what is not financially prudent – but someone has to do it. Not everyone can shove off family needs to a paid resource. Someone has to do it.

Why is our society so closed off to considering what happens to the one who cares enough to help? Why do employers ignore the realities of human life and expect superhuman rock star efforts that destroy lives and families? Aren’t we as a people better than that?

We need to figure this out before the boomers reach an all time high retirement rate. Is it time to rethink the commune idea? Create communities of helping people who pitch in together? The Golden Girls were ahead of their time!

Long Past Time for Respite

Share

Word of advice:
Don’t let your daughters grow up to be caregivers cuz it will no longer make a damned difference how smart, pretty, cute, competent, capable, skilled, educated or creative they might be. Teach your girls to be passionate, professional, and powerful. Make sure they understand the difference between caring, caregiving and caretaking. Don’t let them lose themselves as they care for others. It’s not heroic. It’s not good. This is 8 years now.

I can’t tell you how many people have told me I need a break.
I can’t tell you how many people have told me I need to take care of myself.
I can’t tell you how many people have suggested I find some outside help or support.

I can tell you that no one has offered to pitch in so I can take a day or two or ten off.
I can tell you that my back has never hurt so bad.
I can tell you that I’m in worse shape than ever and I’d devoted my life to being healthy, fit and capable.
I can tell you that just when I think I can get a break to nurture me, I end up taking more time to care for the patient. Or lately, something else comes up.

I know this: It’s my job to take care of me first. I didn’t get a lot of pleasure from stopping to get a little tea after another stupid fight in a parking lot. But it did calm me down. It did put things in perspective. Why? I heard him say: I can’t talk to you, after he rushed across the parking lot instead of helping me put his wheelchair together. He’d accidentally nearly fallen and it was evidently my fault he didn’t see the wheelchair frame. I apologized, but he was gone. Emotionally gone. So I sat down. He came back to put the thing together. As soon as he gets settled in his chair, he takes off. He called out “I’ll see you in the store” and took off leaving me to close up the car.

I walked around the grocery store looking for him. I stopped for a tea, and walked around again. Decided the hell with it. I paid for my tea and went back to the car, opened it up and waited. He comes back and tells me to go sit down. I offered to help, but he said nothing. I once again endured a deathly silence as he drove us home. I gave him plenty of time and space to say whatever he wanted. Silence. Get home, he goes to his office and shuts the door. Second time this week.

I didn’t cause this, I can’t control it, and I can’t cure it. I can’t win for losing either. I can’t win at this job. There is no end to it, no break, no sanity. It’s all about him. I didn’t want this for my life. My life? My passions? My interests?
Right! Somehow, no matter what I think I want to do, it always rolls right back to caregiving.

And he doesn’t need me all the time. Just when he does. He can handle most “activities of daily living” but he can’t handle actually doing anything for himself until he gets mad at me for not loving hefting heavy stuff at weird angles.

Yeah, Don’t Let Your Daughters Grow UP to Be Caregivers. Nursing would be better. But if they do that, maybe they should just be Doctor’s. There is such a thing as Helping Professions that are fulfilling on many levels. If your girls are of a caring nurturing nature, Please Please Please push them to find a valued profession that pays really well so they can hire someone else to do the daily caregiving of someone they love. Then the love stays in the home, the mutual caring and respect is intact, and the marriage remains a marriage.

Can You Feel It?

Share

There has been a lot of noise of late about peoples opinions on various illnesses and diseases.

I’m sad about this whole thing. I can easily see how Robin Williams could succumb to the darkness. People spew all kinds of stuff about happy happy joy joy — but everyone of us is human. And as humans, it is every bit as normal to be sad as it is to be happy. IN TRUTH, you can’t feel real joy if you can’t feel real sadness.

I’m disgusted by the cold hearted comments about depression, chronic illness, and long term illness. I’m angered by a man whom, when I responded kindly to his claims that these diseases are not a tragedy but a choice, blasted me with a hateful comment that started by saying “Bullshit – you don’t know what you are talking about” — My heart was in the right place, but he can’t feel it. The ignorant have loud voices and hostile behavior only to cover their ignorance and naiveté.

What’s got me in a tailspin this week is not that this person matters to me personally, but that he might represent the majority. I fear it’s true. I know how cold people can be. It’s the kind of cold and calloused attitude that literally stops people from reaching out. It’s stopped me! 

It’s reminded me that I grew up believing I should suffer in silence, find a way to pull myself up and just buck up and take it like the dynamic and strong woman I am supposed to be. I didn’t know how to be any different until I finally learned.  It took years to let people in. I feel sadness for those who never open to the true joys of love and intimacy.

I do know what I’m talking about. I am the caregiver. I know what I am living with, watching, helping…. I see the demise of a wonderful man.
I know the financial and emotional devastation of long term illness — an illness that has no end, no treatment, no real cure that is known or common. Some days it’s like a slow walking death.

Often, we think losing an arm or a leg would be easier. Paralyzation would surely have it’s own problems, but there is plenty of help. Often we think Cancer would be better — there’s a better chance of recovery, a better known treatment, and a better quality of life. YES — I am serious!  Cancer ? Yeah there is a lot of help for the patient and the family, during and after treatment. And there is a lot more community support. Let’s face it – there is big money in fundraising for causes — and cancer is a big one.

But I know most people won’t get that, won’t want to understand, and surely won’t believe – because it’s scary as all hell and there is nothing that your words will do to fix it.

I know well the damage that stupid words cause. I know too well the pain uncaring idiots inflict when they play their ego strings hoping to make others hurt because they too hurt. I know that to many, invisible illnesses don’t count in the world of sickness and devastation.

I don’t want to let that one ignorant man ruin me — but it hurts. It shocks.  And what I need to know is that there are more good people out there who truly have hearts – who truly care – who have it in them to reach out to us. Because dammit – in the throes of this madness, it is just hard to reach out to others – especially when there are people like Gary Cotton, Rush Limbaugh, and a few other cruel trolls running around.

Indeed, what I need to know is that love is more powerful than hate, that acceptance is stronger than rejection, that people do care and are able to extend a little love instead of waiting for those hurting to ask for it.

It’s not drama: It’s life!

Share

Who do you want to be?

We can all get drawn in emotionally. That’s why reality tv is so popular. People avoiding their own lives by watching the lives of others.

I’ve noticed several posts on Facebook of late about how to avoid other people’s drama.  In reality, its how we choose to listen and validate others. Or not. See, I grew up feeling that emotional anything was wrong. I grew up believing that any show of emotion was weakness. I’m not going into how I got that way. I will say that by the time I was 35, it was no longer working to keep a hard shell around me. And it took many years to learn to be my real self.

I ask you: Is it healthy to label real life as DRAMA?
When real things happen to you, your friends, your family — are you shutting them out and shoving them away because it’s too dramatic?

Read More→

Time savers

Share

Risky Business, yeah? Shopping online can save a bunch of time and when you find a reputable dealer who you love, it’s worth it. When you know what you want, and you can get it faster, it just makes sense.

I’m usually kind of leery of unknown vendors.  We all should be. But more and more, my favorites are all so easily found.

It’s nice to shop local. Especially when the brick and mortar shop is locally owned – even if they’ve expanded to become a globally recognized seller. And many offer online shopping conveniences. But as a caregiver, shopping becomes the goal for a day and I’d really really rather do other things.

It’s also great because they usually deal with your state sales tax. In Washington, it’s a problem.  We became a destination state, so if we buy anything anywhere, we are supposed to pay a USE TAX if we plan to use the item here in our state. It doesn’t matter if we paid tax elsewhere. We are expected to make up the difference.  I know. I just spent a month going through 4 years of receipts to report any unreported use taxes.  Bad timing, but I sure learned a lot. One thing I learned is I have to ensure I keep excellent records.

But here’s the thing. Caregivers are busier than regular people. We don’t get a break. We do the work of several people, wear 10 hats, and its different than raising children. We are to Go To For everything.

I’m not complaining. I’m just acknowledging the truth. The life of a caregiver can get rather complex. When I cared for my Mom and Dad, I was the one who made time to run errands for them. Every time I stopped by, there was a list of things to pick up various stores.  At one point, I asked my brother to grab some things at the store. He kind of forgot.  What I learned is it most often is better to just find a way to get things done.

ONLINE SHOPPING IS A HUGE GIFT!

Here’s a favorite seller with a great 4th of July sale going on. Backcountry.com is known for great service, great products and great fun. Get the Goat!

Caregiver Chronicles

Share

The Road to Regaining Some Kind of Life

The things people say!  NO ONE GETS IT UNLESS THEY’VE LIVED IT.  After many years, I came to see that some people just don’t understand that caregiving isn’t as cut and dry a situation, it’s not a project to run, and it takes a certain heart to handle it. It was that way with my parents. It’s more so with my spouse. And it’s the same self nurturing that gets us unsung warriors through the day, the week, the month.

With a cancer patient, you have a treatment plan. With a cardiac patient, you learn quickly how to care for the patient and help them get better.  Outcomes vary, but there is an obvious, somewhat proven plan based on cause and effect. If you do this, you get that.

I actually told a cancer patient who was preparing for her chemo and week after that “that beats not knowing for 8 years and not getting any relief”   Yep — some days it feels like cancer or amputation would be better. In fact — it would. You’d know what the hell is going on.

Chronic Fatigue Syndrome!
There is more to our story, but the Chronic Fatigue Syndrome has an obvious pattern of unpredictability.
People wonder why it is so hard to make plans, why it’s so hard to keep commitments, but here’s how a day goes:

We make a plan to do something together. Start to head out. Suddenly everything changes. He gets sick or he gets hit with a wave of fatigue so bad he can barely move. Plans shot to hell. But how sick is he? Will it pass? Will it last 2 hours? 5 hours? 3 days? Our world is designed by dependability. When people can be counted on to suit up and show up, they can be relied upon. When they can’t, the world can be a cruel place. Most with Chronic Fatigue Syndrome have long periods where they can barely get out of bed let alone hold a job. Only 50% are able to work part time, and nearly all have impact to their work. Many at one stage or another, can’t do anything.

It just makes life a bit challenging. Anyone living with someone who has Chronic Fatigue, Fibromyalgia, or any number of other invisible illnesses knows. We become the masters of patience and understanding, sometimes to our own amazement.

My top 5 tips:

1) Just have a plan. Plan anyway. Because if you don’t, you’ll sit around on the good days and do nothing.

2) Be prepared. Like the spouse of an alcoholic soon learns, have a back up plan or idea of something else YOU can do if Plan A fails to happen.

3) Have a list of things:

  • Things You Want To Do
  • Things You Need To Do
  • Places You’d like to Go
  • Personal Goals / Dreams
  • Family Goals / Dreams
  • Friends to Call
  • Self Nourishing Top Picks

4) Pick a time every day that is just for you – one hour or more

5) Plan shopping and errands so they don’t become the highlight of every outing. Use Online Shopping and Home delivery services, carefully map out shopping trips for distance, size of store, time involved, and weight of goods purchased. Don’t bring the patient if you are planning an extended trip — but if you do, plan on several breaks and know where the person can sit and rest while you finish up.

There’s Nothing Wrong with asking for what you want…

Share

Just be careful who you ask!

Lifelong lessons were tough. Don’t ask. Don’t admit you need help. Don’t expect help because it’s not there.

But folks, that was all so totally wrong. Asking for help meant causing people to stop what they were doing and think about someone else. It was rarely about them, but they feared helping another was a sign of something, perhaps admitting their own fears? Not sure.

Today was a big day. We asked for help. People whom I barely know asked no questions, made no motions of shaming — they just wanted to validate that the story was real. It’s real alrighty.

I am blessed to know that angels are circling and happy to help just because a friend is in need. I am delighted and overwhelmed with gratitude and love for those who literally offered help with no qualms, no questions, no loss of dignity.

The most generous of all was a man whom I barely know any more – and he made it sound like it was an honor to help me and it made his day. Go figure. That is not what I grew up with.

It’s all about opening our hearts, listening, and knowing.  Knowing when to answer that little tug that says, you know what: I want to help and this much I can do.

It’s about honoring yourself.  It’s about knowing that you can, and then doing.

What’s it all about?  Well….here’s the link that kicked it off:  WE are using GoFundMe to crowd fund a trip to the Mayo Clinic.

 

Winding Down: Good bye 2013

Share

 

It’s been a good year for connecting with some wonderful friends, new and old.SailingPS-4458

Through the wonders of the interwebs, I’ve enjoyed connections that never would have happened, friendships deepened,  and yes some were let go. Not exactly smooth sailing, but we made it and we still have faith.

I’ve made new friends. I’ve found old friends.  I’ve connected deeply with the people who mean the most to me. For this, I am most grateful.  It’s been a year! As this year winds up, I’m getting contemplative and internally focused. I always do. It’s that time of reckoning: What did we accomplish. What did we love. What do we need to forgive of ourselves or others. How can we make next year better!!!! That is why we all go through this. How can we make next year better!

My self-claimed purpose again distracted by a very strange road filled with many large part holes. Through it all, I recognize at times that my strength comes from a bigger source. It’s surely not in me because I would have crumbled without the faith and love of something bigger than I. Some call it God, others call it Nature. And some? They just call it Source. Works for me, man!

In my reverie, I suspect some wonder how people get through these kinds of trials. With that, I have to admit I do too. And then I find some little thing to do.

My New Year’s Gift to you. Some random thoughts on what keeps me going. Read More→