Saturday, September 27, 2014

After a Stroke~ A blog and a rant

Kate Allatt had a great post today. It was about changing the focus of the National Stroke Association and mental illness in stroke survivor. I whole heartily agree with her.

Is it any wonder why Dean considers the National Stroke Association a joke. For the past two years since my stroke, I've subscribed to their newsletter. What do I find in my inbox? Pleas for money, participation in fund raisers, and a focus on stroke prevention, ie, F.A.S.T. As if stroke
survivors had abundant loose change floating about to donate.  Many stroke survivors are in the same boat I am. Our loose change goes towards NEEDS because recovery is first out of our pockets. Fund raisers and awareness campaigns are a great thing to do for nonstroke survivors. F.A.S.T is a half lustered approach for warning signs you may be having a stroke, but why give the stroke survivor a goodie bag full of advertising. Isn't that like putting the cart in front of the horse?

National Stroke Association put that money into where the money can do the most good for stroke survivors...research and recovery, even adaption techniques would be more useful.
After all, that's the only reason I and most survivors read your site. To date, I can count on one hand how many articles were geared for the stroke survivor. We didn't die from our stroke and trying to find normalcy. Help us. Be of use to us. Sure prevention is important, but surviving a stroke is just as important.

<stepping off that soapbox on to another>

Kate brings to light another point of why mental illness is so prevalent in stroke survivors. Actually, a couple of them. Robin Williams' recent death by suicide sheds new light on depression. He's just one of millions.

In my own experience, I see this happening in my own life. When I first came home after my stroke, my children were failing all over themselves to help their poor, old mom. Granted I couldn't do much. As time progressed, the visits/help became fewer and fewer. I might see the one daughter who lives the closest once a month. The others, every six months, if that.

Yes, as a momma, I make allowances and excuses for this behavior, but really? "Call me, if you need me." But when I do call only when I'm desperate, you are all busy in your own lives and be able to fit me into your schedule next week. I understand this is an intrusion into your life. That's why I waited until I'm desperate!

My daughter came in from AZ. When I asked her to clean (knowing it would be spotless after it was done) my kitchen after a six month's absence, I got, "I told you I wasn't going to do this again."

Forget about Mom had a stroke. Mom has had a seemingly endless pressure sore on her foot. Mom is using every spare ounce of energy she has caring for their stepfather. Forget about the money she was trying to raise on limited resources to help her. Forget Mom is your sounding board and supporter for life past and present. Just nope, "I ain't gonna do it" and didn't. In fact, I saw her only thirty minutes in each of her three visits that week. Closer to ten minutes after she spent time talking to my DH (darling hubby).

When I complained, which I don't do very often, to my oldest daughter who lives an hour away, about the lack of help I got, "Well, I put my life in a holding pattern for the first year after your stroke. When do I get a chance to have a life?"

I won't ask my grandchildren to do clean or do most of the things I can't when they come (few and far between) anymore because they leave a bigger mess than when they started. Once was enough for me to learn this. It took me two months to clean up that mess.

My hospice volunteer had life get in the way. So I hired a neighborhood young man to do the yard work. After a sob story, I paid him in advance for work to be completed. He is history. I haven't seen him for three weeks. Lesson learned and pocket emptied.

I get offers from neighbors and friends near and far to help...
"If I only lived closer." (Even if I know you really mean it)
"Just call."
"What can I do for you?"
"Oh, I don't have time for that right now. Maybe next week"
Frankly, I'm tired of asking for help and not getting it. I may be two years out from my stroke, but there is a long list of things that are just a physical impossibility to do, but I still try because I'm the only one I can depend on while others depend on me too.  Now I know everyone doesn't have the same attitude I do...if you see something needs to be done, then do it. I can't be the only one.

So if you are amazed by what I write I'm doing, in spite of personal risk, please understand I'm doing it because I have to. Don't be amazed. Somethings need to be done whether you can or not. But somethings just can't be done and permanently left undone unless I can find someone else to do it. Is it any wonder that the doctor increased my antidepressant (for Fibromyalgia) to combat signs of stress/depression. Nope, not in my mind.


3 comments:

Diane said...

Jo, totally understand!

Friends, neighbors, relatives are only good for awhile. then it dwindles off--- and plus, I have heard that too, that "Only lived closer" thing.


if you are lucky, you really find someone who cares... everyone else has excuses/lives of their own, and I guess, who can blame them?

National Stroke Assoc, useless -- they e-mail me too, seem they just wants money--- for what?
Certainly don't seem to be helping stroke survivors...

and hired people for lawn work, etc. --- OMG seems you can't count on anyone.. no one really understands until it happens to them...

hang in there, stay strong,

J.L. Murphey said...

Diane,
I know you do.

Deniz Bevan said...

{{hugs}} Jo
I totally understand about the money -- funds are most needed for research, and it galls me to see these types of organizations spending money in other directions. We need research towards cures and recovery!