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Stroke Caregiver - female
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About Thea

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    New Member
  • Birthday 03/24/1963
  • Age 57

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  • Stroke Anniversary (first stroke)
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  1. Sue, thank you so much for reaching out. Your doing so is an emotional life saver. One of my major frustrations has been that is little to no instruction or support for caregivers. It's more like "He's discharged, here he is, take him home now". I found I was actively inserting myself into my husband's daily care and therapies for months, just to get any scraps of a clue I could. Each acute care facility should have a volunteer stroke caregiver mentorship program, to match experienced caregivers like you to clueless newbies like me. I am surprised something so simple and cheap to put in place isn't. Part of what causes me stress is feeling like I am failing in procedural parts of the process, even simple things like the meds box getting away from me and running empty. In and of itself, not a big deal but in addition to the other pots on the stove boiling over...I know you get it. So many hats, not enough time. Feeling guilt for tending to myself or the selfishness I feel for engaging in a hobby that really helps my mental health. As for what you say about the meds...and it's true, doctors are not infallable but geeze louise. Even a secretary like me knew the dangers of the "high cholesterol high blood pressure combo". It's a public service announcement a minute, so to speak. For a doctor, it's got to be pretty much doctor 101 information but somehow, I was the only one who thought it was a big deal. It was the subject of several arguments between my husband and me PRIOR to his stroke, my telling him his health was in danger, and him replying, "Well, you're the only one saying this, the dr says it's fine." And now here we are. You also clearly understand without my ever having said so I live in constant fear of him having another stroke. I know the major risk factor for having one is already having had one. I read everything I can get my hands on about strokes, as well as all my husband's other related conditions. A helpful part of advocacy is knowing the facts. I will never know how your husband survived through so many strokes, or how you did right along with him. I would love to hear any information you might be willing to share with me, or any other experience and advice. I would hate to impose, but it looks to me like you are the mentor I have been looking for. I am very open to chat but am having trouble on my tablet seeing where to select the rooms. I cannot see anything on the left beyond the solid black border of the initial chat area. If I remain unable to chat however, connecting with you has already been a considerable relief. Thank you so, so much again for reaching out and understand the emotions I have stem from very valid circumstances and not just me being ill of nature.
  2. Thank you for your kind replies. I want to stress my husband proper or providing his care have nothing to do with my anger and resentment; rather, these emotions stem from what appears to be careless medical treatment by his PCP. My husband had no self-imposed risk factors for stroke. He was active, didn't smoke or drink and was at an appropriate weight. The only issue he had was high cholesterol that went from 201 to 241 in a year. He was never put on a statin. When PCP noticed an acute spike in his blood pressure at a routine office visit, they ordered daily home monitoring and required him to send readings via their portal. He bought a cuff and began using it within 12 hours. He sent weeks of daily readings that were ALL in the stage 1 and 2 hypertensive ranges according to AHA guidelines. When the PCP finally did put him on meds, none of the SIX she tried controlled his BP. Husband began to feel ill and was told in a written portal message his readings "...look great! Stay the course!" Rather than refer him to a specialist, PCP RE-prescribed one of the medications that didn't work the first time! As husband was just finishing up the last details of his deceased parent's care, and a sweet guy whose specialty was never self-advocacy, I was determined to work on resolving this when we returned home, but never got the chance. His stroke occurred thousands of miles from our home, requiring us to be medevac'd back (to the tune of well over 30k). My husband went to long-term acute care where he remained for three months. I returned home and all his PCP said to me when I told them about his stroke was, "Oh buck-ets". Yes, oh buck-ets indeed. Which brings us to today. As I retired early my pension will be reduced over my lifetime by about 150k. My husband struggles to tell me what he wants for lunch. Each day my heart breaks for him a thousand times. The retirement we both worked so hard for has been ripped from under us. Thus my feelings of anger and resentment. This was just one of the many strokes that didn't have to happen, if only the PCP acted responsibly by making an appropriate referral. I learned a funny thing about "standard of care", though. SUBstandard counts too, no matter how a life or two gets ruined.
  3. I am here because I need help coping with and learning to accept my husband's stroke. My husband suffered an acute ischemic stroke 7 months ago. Months previous to his stroke he presented with high cholesterol and a spike in blood pressure that went untreated by his PCP. He now suffers with aphasia and apraxia. He did regain his ability to walk but still has no feeling in his arm or leg. It may be because I believe his stroke came with plenty of warning and could have been prevented (but wasn't through no fault of his own), but I am stuck somewhere between anger and depression all the time. His stroke forced the closure of his business and me into early retirement. I constantly mourn the easy conversation we used to have. I am angry over this stroke destroying our life and changing the dynamics of our marriage from spousal to more parental. I feel like I no longer love him like I did and this brings me extreme guilt, because none of this was his fault and he deserves better; better I just can't seem to provide. He and our life together was everything to me for 20 years. Now I resent I shoulder the burden of everything inside and outside of the house. I no longer exist as a person, but just his caregiver. I feel as if a lot of my anger and resentment would subside if I could just accept what happened, but since I believe it could have been prevented I just can't. Any advice would be greatly appreciated.
  4. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

    1. Thea


      Thank you.

    2. Willis


      Welcome to a place where there are many who understand what has happened to ypu.


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