Archive for the ‘Caregiving’ Category

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Yeah, I can be a REAL ass when I'm feeling really down about my diminished health status. Unfortunately, having chronic illnesses (yes, more than one) means that I have very few acquaintances. Heck, I don't really have anyone local I can call a "friend." The fact means I have no one to vent all my frustrations to – no best friend's shoulder to cry on, no one to listen to me rant about the crap that people with chronic illnesses rant about: can't find a do that listens or seems to care, losing the life you once had, feeling like an utter and complete useless blob, feeling like an incredible burden to your spouse/significant other.
So, who gets the brunt of my anger, sadness and self-hatred? My wonderful husband.
Even though my anger and hatred isn't direct AT him, it doesn't sound that way to him, and what I say and how I say it REALLY hurts him.
Last night, I learned just HOW MUCH what I say hurts him-deeply: about feeling like a financial and emotional burden; wishing i could just end my life; being a hunk of uselessness; how everything I touch turns to crap (the reverse Midas touch curse"); how ugly I have become…
I honestly didn't realize that what I was saying was reflecting back on his choice to be with me and for standing by me during all of my medical struggles.
I hurt so badly now because of how deeply I've been hurting him.
Tears aren't enough.
Saying "I'm sorry" just doesn't cut it.
How do I undo the pain I've unintentionally caused the only reason on the face of this planet that love me?

If I ever find out, I'll let you know.

I love you, K. I hope we with all of my hrart, soul and being that we can learn to work together against these medical miseries, and remember that we are on the same team.

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My bad.
This topic was my idea and I dropped the ball.
When I made my recommendations to WEGO Health for blog topics, I was thrilled about this new resource I had found.
CarePages is this really awesome resource that allows patients and caregivers to create FREE web pages that are accessible only to those that the page creator allows. The purpose of CarePages is to let patients connect with family and friends during a health challenge, and helps patients to build a support circle. You can add links to credible information about your condition, create a blog about your journey, and allow loved ones to leave comments for you. You can also connect with others via the forums on CarePages that have similar conditions and learn what works – and doesn’t work – for others.
So – what at are you waiting for?? Head on over and create your own CarePage!!!


Day9

I was a caregiver for my Mom for nine years, who had many strokes, ended up hemiplegic, in a wheelchair, living – more like just existing, wanting to die. It was very tough on both of us.And very tough for my husband.

Now, I’m the sick one. I live in daily fear of having a stroke and ending up like my poor Mom. Even though I am not in a wheelchair, I feel that my existence has become small and insignificant.

Having been a caregiver, and now, a “caregivee,” I am in a unique position to give advice to caregivers. I’ll keep it simple:

1.  The MOST IMPORTANT thing above anything else – keep the health and well-being of yourself #1. If you aren’t well, both mentally and physically, you cannot render good care.

2.  Please don’t talk to the person you are caring for in a “less than” manner. No baby talk, no condescending platitudes, no ridiculous sayings such as, “Buck up Buttercup!” “The sun will shine for you tomorrow!” No one believes this crap – especially those that are ill.

3.  It really is the little things that make a difference to the person you are caring for. Remembering to bring them a drink, or something to snack on (knowing that their mobility is challenged) every so often, means the world to them.

4. People that need the assistance of others often feel like a tremendous burden to their caregivers. To minimize this, don’t emphasize the things that you are doing for this person. Making things seem as “normal” as possible is the best thing for all involved. Yes, you want the person to know that you care about them, but emphasizing how much you are doing, or, how often you are going out of your way for them just increases that burdensome feeling and guilt the person being cared for experiences.

5. Integration is key – making the ill individual feel that life with them is enjoyable and as “normal” as it was before the illness is paramount. Being ill doesn’t mean the person is helpless – let the person do what s/he can still do without causing themselves harm. Contributing to daily routines helps the person to feel “OK” about themselves and their place in the family unit.

An excellent place that helped me significantly when I was caring for my Mom was A Place for Mom. This wonderful organization, which offers it services for free, helped me to do one of the most difficult things I have ever had to do in my life – find a care organization for mom when I could no longer care for her in my home. Based on our individual circumstances, I had to utilize their services on three occasions. Without them, I would not have been able to find the quality care-giving agencies I was fortunate enough to locate with their assistance. I cannot say enough goo things about this organization. (Despite the name, the agency will help you find a place for Dad, for brother, for sister, or any person that is in need of a place to provide them services that you cannot provide in your home.)