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User profile for anniesd99
Name: Nancy Welch
Alias: anniesd99
Forum Status: Member
Posts:3
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Description:Caregiver for husband that had 3 strokes. One minor, 2nd misdiagnosed, more severe, 3rd misdiagnosed leaving no use of right side. He can walk with a cane wearing a boot, very limited. In constant pain which increases with activity. Aphasia, trouble with communicating. Information is within but isn't always orrect and may be corrected with the right answer shortly to weeks later. Yes is no, no is yes for which I am able to communicate as take the time to correctly work with him but healthcare providers take for granted a yes or no is correct. His answers, conversations will be the same and does not remember responding or just in general as watching the sames shows repeatedly. Myself have medical issues which includes limited driving, the days able, sitting and walking. Unfortunately we live in rural setting, 35 miles from city(?), 100 miles+ from where he was treated. We see a clinic dr.. I can only work with on-line info/groups as I could not drive nor sit thru a meeting and no phone calls as every call placed is long distance. To note: I have found sites as this, American Stroke to be the most confussing, stressful to maneuever or hit highlighted site to say page cannot be found. To log in then not be able to find forum you were at. Thus, give up.
Recent posts:
OMG
Posted at: 2022-02-18 19:26:51
Now I know why posts are so old as they themselves have suffered a stroke from the frustration of this site. Write something than delete it to to post a question about caregivers. Nothing shows. Write a reply to someone. Come back later only to find deleted message showing in her reply which had been done hrs. prior to ever opening her post. The post I posted never showed up.
As my post “was” addressing the professionals, healthcare services and “assuming” and we all know what that word means, that the answer that get is correct but instead the opposite or bizzare for which I know is wrong, I give up. Again! I got so fed up after his stroke doing research and the junk mail I received, stayed away. Sould any old members stop back, lol as if they would, hope you recouperated.
New to this…
Posted at: 2022-02-18 18:36:24
I can’t offer help which is why I tried site but find to be so frustrating or post then does not show but frustration post does. My husband had 3 strokes, we were separated. Minor, 2nd misdiagnosed and thru therapy was doing fairly well then 3rd major, again misdiagnosed leaving him with no feeling except pain on right side and speech is very limited. His yes can be no and vice versa so I word things and requestion, everyday for everything but healthcare providers take for granted what he says is correct. Conversations, if you call them that, are very limited by either repeating the same answers everytime. There are times when he can answer my the whys, ”I get confused” and not another day.He finds it hard to find the words. The info is in his head but is not always available. He might tell me what tool I need or how to fix something completely wrong but sometime which could be weeks he will remember correctly. I have no doubt if therapy could have been continued, definitely not the in home we had, he would have come a long way. Ins. doesn’t pay so that leaves us caretakers, right? I’m limited with my own health issues. My resources are limited as rural going to town usually 1 a month which turns out to be about 80+mi total. Outside support group not an option nor would I be able to sit thru one after the travel. Phone calls not 800# are all long distance. They are not an option. Computer and connection has it’s problems with only one provider in our area. I have to hit blank spots on computer for many things and have it set up on my right. He needs the left side. I hope you have more resources avail to you. It has to be hard having a family not only with your communication but between the children and dad. I’m sure you relied on him so much. I rely on mine when it comes to hooking up, wiring as such and he has days info is there and other times I wait weeks, but it’s there. Warm wishes to you and best of luck finding ”the answer”.
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posting+new?
Posted at: 2022-02-18 17:51:53
Just seeing if this posts after hrs. of frustration around these sites, either clicking on something within site to show not available, recheck, to finally post and have it not show and then to see old posts as does anyone use this site except for 1 that needed to vent. My venting is no longer about stroke victim but the frustration with the sites that then I no longer want to enter. Must sign up, then cannot find where you were to go back to, must check e-mail, secure password, for what. It’s simply information so who cares, certainly not me. I will deal with people to people, not what imformation is provided as people dealing with, what they have discovered is SO very much more informative than the sites themselves.

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