death

Caregiver dilemma: I’m scared of doing it wrong

~ Jen Leinweber ~ Leave a comment

Becoming a caregiver for someone you love can be a wonderful, but terrifying experience.  If you approach the experience with a deep love for your family member and the determination to make sure they are safe, loved and fulfilled as a human being should be then you will be wonderful as a caregiver!integrity

My most terrifying moment as a caregiver was the day we brought Dad back home.  He’d arrived via medical transportation and shortly afterwards I was alone with him for the first time.  I stood there scared beyond everything.

I was completely responsible for Dad’s health and well-being.  I had completed the coursework, testing and clinical experience required by my state to do this work.  I even had the little piece of paper to prove it!

But as I stood by Dad’s bedside that fateful afternoon I was nearly paralyzed with fear.  I was scared that I would do something wrong.  I was worried that I would cause him unnecessary harm with my ineptitude.

I took a deep breath.  I exhaled.  I did it a few more times – just to make sure I could.  I decided to start with the basics of caregiving.

I took Dad’s hand, told him that I was going to do my best for him and that I may have a bit of a learning curve.  I let him know that everything was going to be ok.  I spent several minutes talking to him, holding his hand and comforting him.

In comforting Dad I found that I was also comforted.  In telling him everything would be ok I felt that it would be ok.

I began to relax.  The fear that had frozen me dissipated and I was able to begin providing the personal care Dad needed.

There were times I made some mistakes, those mistakes didn’t make his condition worse.  The mistakes were a part of my learning curve and I did learn from them.  I used these lessons to provide even better care for Dad.

In the end I knew I had done everything I could to honor my father.  I had given him the care he needed.  I had ensured that his final days, weeks and months had been spent surrounded by love.  I do not regret forcing myself through my paralyzing fear – I would do it a thousand times over.

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If your days on Earth were numbered, what would you want to do most?

~ Jen Leinweber ~ Leave a comment

This question is sometimes talked about, but when push comes to shove what would you really like to do as your time comes to an end?

For most of us it would involve an activity we enjoyed, perhaps where we felt the most peaceful within ourselves and with the world.

This Vietnam vet requested to do just that … he wanted to go fishing one last time.   I’m sure it took some inventive thinking and extra effort on the part of this man’s family, friends and caregivers but they made sure it happened for him.

Why?  Why do this?  Simply for this reason: make every moment count.  Take every day you have whether 1 or 100,000 or 1 million and find joy in the living of that day.

Gone Fishin’

Big Pharma Vs Patient needs

~ Jen Leinweber ~ Leave a comment

We’ve seen this over and over again, patients being prescribed medications because the doctors are being encouraged by the pharmaceutical companies to prescribe.  Right now it’s some of our most vulnerable who are being prescribed medications that may or may not be safe for them.  PBA (pseudobulbar affect) is a real condition, but is rare and usually affects those with MS or ALS (Lou Gehrig’s disease) but a surprisingly large number of dementia patients in nursing care facilities are being prescribed this medication often without the knowledge of their medical power of attorney.

It is being used as a behavior modification medication.  There hasn’t been sufficient studies to determine if this medication is; a) safe for use in dementia patients, b) actually works across the board as an effective treatment for behavioral outbursts or c) drug interactions with other medications typically prescribed for dementia.

This article goes into quite a bit of detail about the disturbing practices of the drug’s manufacturer, prescribing physicians receiving kickbacks for prescribing it and the fact that a medication designed to treat a rare condition specifically related to completely different diseases there are a large number of patients (especially in nursing facilities) being dosed with it.  Read here.

Caregiver dilemma: I’m scared of doing it wrong

~ Jen Leinweber ~ Leave a comment

Becoming a caregiver for someone you love can be a wonderful, but terrifying experience.  If you approach the experience with a deep love for your family member and the determination to make sure they are safe, loved and fulfilled as a human being should be then you will be wonderful as a caregiver!

integrity

My most terrifying moment as a caregiver was the day we brought Dad back home.  He’d arrived via medical transportation and shortly afterwards I was alone with him for the first time.  I stood there scared beyond everything.

I was completely responsible for Dad’s health and well-being.  I had completed the coursework, testing and clinical experience required by my state to do this work.  I even had the little piece of paper to prove it!

But as I stood by Dad’s bedside that fateful afternoon I was nearly paralyzed with fear.  I was scared that I would do something wrong.  I was worried that I would cause him unnecessary harm with my ineptitude.

I took a deep breath.  I exhaled.  I did it a few more times – just to make sure I could.  I decided to start with the basics of caregiving.

I took Dad’s hand, told him that I was going to do my best for him and that I may have a bit of a learning curve.  I let him know that everything was going to be ok.  I spent several minutes talking to him, holding his hand and comforting him.

In comforting Dad I found that I was also comforted.  In telling him everything would be ok I felt that it would be ok.

I began to relax.  The fear that had frozen me dissipated and I was able to begin providing the personal care Dad needed.

There were times I made some mistakes, those mistakes didn’t make his condition worse.  The mistakes were a part of my learning curve and I did learn from them.  I used these lessons to provide even better care for Dad.

In the end I knew I had done everything I could to honor my father.  I had given him the care he needed.  I had ensured that his final days, weeks and months had been spent surrounded by love.  I do not regret forcing myself through my paralyzing fear – I would do it a thousand times over.

Big Pharma Vs Patient needs

~ Jen Leinweber ~ Leave a comment

We’ve seen this over and over again, patients being prescribed medications because the doctors are being encouraged by the pharmaceutical companies to prescribe.  Right now it’s some of our most vulnerable who are being prescribed medications that may or may not be safe for them.  PBA (pseudobulbar affect) is a real condition, but is rare and usually affects those with MS or ALS (Lou Gehrig’s disease) but a surprisingly large number of dementia patients in nursing care facilities are being prescribed this medication often without the knowledge of their medical power of attorney.

It is being used as a behavior modification medication.  There hasn’t been sufficient studies to determine if this medication is; a) safe for use in dementia patients, b) actually works across the board as an effective treatment for behavioral outbursts or c) drug interactions with other medications typically prescribed for dementia.

This article goes into quite a bit of detail about the disturbing practices of the drug’s manufacturer, prescribing physicians receiving kickbacks for prescribing it and the fact that a medication designed to treat a rare condition specifically related to completely different diseases there are a large number of patients (especially in nursing facilities) being dosed with it.  Read here.

If your days on Earth were numbered, what would you want to do most?

~ Jen Leinweber ~ Leave a comment

This question is sometimes talked about, but when push comes to shove what would you really like to do as your time comes to an end?

For most of us it would involve an activity we enjoyed, perhaps where we felt the most peaceful within ourselves and with the world.

This Vietnam vet requested to do just that … he wanted to go fishing one last time.   I’m sure it took some inventive thinking and extra effort on the part of this man’s family, friends and caregivers but they made sure it happened for him.

Why?  Why do this?  Simply for this reason: make every moment count.  Take every day you have whether 1 or 100,000 or 1 million and find joy in the living of that day.

Gone Fishin’

Grieving … just get over it – NOT!

~ Jen Leinweber ~ Leave a comment

There are many misconceptions about grieving and dealing with the loss of a loved one.  The biggest is that it is a linear process and you will eventually “get over it”.  Grief is individual, it is on-going and while we may get to a place of peace we never “get over it”.

Someone has been taken from your world, someone important to you, and you will feel the loss your whole life.  I don’t say this to depress anyone because things can and will get better.  The pain of loss will diminish, but even years later you will find yourself wishing you could have one more conversation or tell them one more time how much you love them.

I recently found an alternative way of looking at the grieving process and like it quite a bit.  Here’s the diagram:

stages of grief

First of all it indicates more of the emotions and layers of feelings than the traditional “five-stages of grief” line would have us dwell on.  I also like the shape they chose to illustrate.  The shape reminds me a bit of a skateboarding half pipe.  When you look at it and think of a skateboarder riding a half pipe you can imagine the skateboarder reaching one level and going back the other direction to another.  They would be in a constant flux between all of the points of the half pipe.

The other thing to take in account with the skateboarder on a half pipe is the importance of remembering to keep moving.  Whether back or forward a skateboarder is happiest when they’re moving, they don’t want to stop in the bottom of the half pipe.  They pass through the bottom on their way but they want to keep moving.

So, the next time someone tells you that you need to “get over” your grief, just tell them you’re riding your skateboard on your half pipe and no one can dictate to you how your ride should go.