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The end of the rope
Hello, etc. Not my first rodeo on one of these caregiver forums. This one looks active so ...
My wife had three rapid succession ischemic strokes to her left side four years ago. Prior to that, she had been a very active, outgoing T-4/5 paraplegic (result of domestic violence) for over three decades. We've been married for 32 years, and as active and independent as she was, I never really considered myself a "caregiver" although, looking back, I was. I performed a number of things as a routine part of our life together that, today, can clearly be seen as caregiving. Anyway, back to the strokes ... there we were, owner/proprietors of a successful small retail farm operation. As well, I had a regular career in Civil Service -- a direct follow on to a career in the Marine Corps. We had worked hard to achieve financial independence (we paid off our farm and had a nice vision of the future. Our grandchildren lived 15 minutes away. Then the strokes came. Actually, before that, she had suffered a bad transfer to her chair and ended up with a broken leg which required surgery. After the surgery, the inept staff at our local hospital neglected to turn her and the bed they had in in post op was one of those airdriven pressure spreading ones that are supposed to prevent pressure wounds in spinal injured patients. Well, these idiots didn't notice that it wasn't operating correctly and she ended up with a pressure wound that went to stage 4 about as fast as I am typing this. The Wound Center here (same hospital) was staffed by a equally inept crew of professional no-loads/oxygen thieves and their best brain storm was that she needed immediate colo-****** surgery (to correct a pressure wound??? ) That and they would not listen to me ... or her ... We decided to leave, despite their dire predictions that she was going septic and would die quickly if we did not get into the ER RIGHT NOW. As I bulldozed her through a phalanx of RN's, we told them that based on our experience, she was just experiencing a little autonomic disreflexia (condition common to T-4/5 paraplegics) that they were misinterpreting as septic shock and that we would take our chances. And about a week after that ... big shocker .... bam bam bam. The strokes hit. Have to admit, after she was released from the hospital, stroke recovery took a back seat to the wound care. She made such a phenominal recovery from the strokes (outwardly, some aphasia persists) that we didn't think much of it. The wound recovery has been a long long long long and very difficult road that has taken us through 4 different wound centers. I have taken on much of the duties of home health care (I have gotten proficient at cleaning, packing and redressing the wound, I can change a foley catheter in about a minute and a half, I can change a diaper and clean up a messy BM better than most moms ... shoot, I even got good at changing the wound vac dressing (something only the RNs are supposed to do, but I proved myself to the doc and he wrote me up for the insurance so we could fire the Home health Care idiots) and I have been through so much with antibotic infusion therapy, a wound infection and more, that I think I could easilly eat my lunch while participating in an autopsy. Not to brag, but to illustrate the path that has led me here... But ... it has only been within the last year or so that I have begun to truly understand that the stroke effects have not been so phenominal or minimal. They have been subtle, wicked and just downright evil. The position of the wound is such that in order for it to heal, my wife has been pretty much in bed now for four years. I have been able to retire from my professional career (right before the COVID nonsense ...) and we gave up the farm a year ago (I still grieve for my farm ... it was a real thing and now that its gone, I feel like I have lost a close family member) because I just couldn't do it alone. I do everything from dishes to laundry to house cleaning to wound care to grocery shopping to maintenance around this little house and half acre of land we moved to. And over the past year, the personality changes have begun to really kick in. My wife has always been a strong person (had to have been to survive 5 gun shot wounds and become fully independant before I met and married her and whisked her away to a Marine Corps career that took us to a lot of exotic duty stations around the Globe ... which she loved and thrived in). She has always been an orderly, detail driven Type A personality. I, despite my USMC blood, am more of a Type B. We have not always agreed on how to do things but we learned to fence off areas of responsibility and identify which were "hers" and which were "mine." And she always had a good filter to moderate her inclination toward order giving, taking charge and wanting to improve ... everything. The strokes removed those fences, filters and moderation. Most of what was "hers" has become mine over the last four years and the filter/fence removal has resulted in her judging, evaluating and recommending changes on just about every aspect of my daily activity. At first, I was able to deal with it. But I have now gotten to the point of feeling worthless, having had my dreams and hopes quashed and my soul pretty much drained away. Everything I once enjoyed is no longer available to me and when I get out, for a few hours or even for the day, it is always with the pressure of constantly watching my watch to make sure I am home on time for the next meal preparation, dressing change, grandchildren duty, household chores... blah, blah, blah. I did put my foot down to claim a couple days a week to work part time for a friend (physically demanding outside labor that suits the Marine and keeps the mind occupied on things other than here) but those days are brutal in that I have to get up well before dawn and I don't crawl back into the rack until close to midnight in order to attend to all the things, chores, meals and wound care that get deferred during the day so I can have my "me time." Its getting to the point of the "me time" not being worth it. I'm sick of hearing "We have to take care of the caregiver, too" and "you have to make room for yourself" and all those other platitudes. I dislike and have little respect for the medical profession anymore (I determined long ago that the housekeeping staff in the hospitals are the only ones there who actually know what they're doing). I came to this site and found the only Stroke Caregiver Support Group is run by the same hospital that started this whole sorry saga to begin with so that's out. I am not trying as hard as I used to anymore because no matter what I do, I get critiqued, corrected or given an alternative/preferred course of action. Why try when no matter what, its just going to be wrong anyway? After four years with no end in site (the wound refuses to heal, and the patient adamantly refuses anything surgical), empty platitudes don't cut it ( I keep threatening to break the jaw of the next scrubs-clad, stethoscope- sporting, clip board-toting medical "professional" who breezes into the room chirping "And how are we today?" without either looking at us or even waiting for an answer as he/she leaps immediately to an assumption that is invariably wrong ... but so far have been able to control myself ;) I would be a truly worthless caregiver for my wife from the county lockup ...). So yeah, I'm in a bad place. But I know it. I am going to call today to start arrnaging for some home health care help ... again. But I'm pretty sure i KNOW HOW THIS IS GOING TO GO. mY WIFE HAS NEVER BEEN RECEPTIVE TO ANYONE TAKING CARE OF HER (I'm so worn out, I don't even care that I accidentally hit the caps key. I'm not going to bother to correct it), so dragging yet another detached, over worked, under skilled home health care RN in here, having to go through the "She's septic" "No she's not, its called autonomic disreflexia -- look it up" conversation for the the umteenth time ... Yay. I'll do it. What else am I going to do? But get away to rest and recup[erate? To recharge the ole batteries? Yeah, right. All I would do is think about what is probably not getting done right, or missed altogether, back here.
Just hearing some real affirmation, or even just getting a respite, however long or short, from being judged and evaluated on ... everything ... would be good. But the strokes aren't going to allow her to do that anymore, are they? Professional counselling? From who?? They're all idiots and guessers. Tried the VA ... need I say more? I have tried to stay in good shape physically. Iwork out regulkarly and I can still fit into most of my uniforms. But my BP is hard to control. My doc has me on 3 different meds and I can only get my CDL medical for a year at a time. My doc is struggling to know why, despite a lot of tests. The cardiologist I went to see looked at my ekg and my condition and told me I was wasting his time :). Again, the obvious answer right in front of all of us is the one they're missing. Stress anyone??? Maybe??? Ya Think????
Meanwhile, on top of the strokes, the wound care, the paraplegia,she has developed ... something ... that makes her skin feel scaly and sensitive to where she recoils from my touch (it so flummoxes the docs that they dismiss it anymore. They can't figure it out so they ignore it). So intimacy?? It's been so long, I don't even remember what the word means.
What do I want here? Absolutely nothing but an ear. I've lived the dream long enough to know that reinforcements aren't coming, there's no relief. I'm in this alone and always have been. My mission, as I understand it, is to remain in place and hold my position. There will be no radio calls no air support no nothing. I'm here til I eventually get overrun. I am trying to maintain my determination that when I go down eventually, I will have given it a **** good fight, my magazine will be empty and my barrel red hot. I've gotten most of the advice, heard all the platitudes so save your breath. I do appreciate your caring and your concern, though. I just wanted to vent. I might not even check back to see any responses. I just wanted to write it down somewhere. I am not suicidal. That is not who I am or how I face things. And I will not do that to my grandchildren. I will be here, with this person I am trying my damnedest to get to know to the end because that was the mission I accepted (and have never been relieved of by competent authority), the vow I took with my wife, my best friend, my lover ... God how I miss *that* woman. I miss her so ********* much.
If you read this far ... it's your own fault ;) Thanks for listening. I feel better now. Really.
AHAASAKatie, August 20, 2020 9:55am EST
Thank you so much for your honesty and for letting us know how you are really doing. Sometimes just getting it all out helps. It does sound like you are taking the right steps in finding another caregiver to spell you. I know from personal experience with my Mom just how hard it is to get a good team of caregivers. She is on 24/7 care and unable to manage her BDLs for years. In February she became %100 percent bedridden and is slipping into dementia because of Normal Pressure Hydrocephalus. While I am not her caregiver, I am responsible for all of her medical and financial decisions, ER visits - patient advocate for palliative care & hospice. I have fought with ER doctors, family medicine doctors, and neurologists to ensure that she is provided the level of care she deserves. I am telling you this to let you know that you not alone. Being where you are is hard. And you have done your best.
I am sharing my favorite article from Huffington Post about the reality of caregiving. Please take a few minutes and hop over to Huffington Post and read this article on When Caregivers are Honest it Makes Folks Very Uncomfortable.
If you do decide to come back and read the responses we provide, I hope they give you comfort.
jmorrow, August 23, 2020 7:59pm EST
Thank you, Katie. Thank you, Pete. Thank you, God, now I know I'm not alone, crazy or mean.
JKViggiano, August 23, 2020 11:47pm EST
Hi Pete. Thank you for writing. My heart goes out to you. It is hard to accept that there are no solutions other than just going straight ahead, but sometimes, that is the only answer.
In the early years after my husband's stroke, I wanted to strangle anyone who asked me about "me time." There was no Me Time!! There was only facing each day and the challenges it brought. The good news for us was that my husband continued to improve for about 8 years. He eventually got some of his filters back. When we were out in public or around our children (they were adolescents), I was terrified he would say or do something completely inappropriate. It happened sometimes, but eventually, he pulled it together mostly.
I have no great answers for you. I can only say that I admire you. Thank you for not retyping just because you hit the CAPS key. You are in the trenches, darn it, and you deserve to vent whenever you need. I hope you write again. God bless you.
Pete359, September 1, 2020 6:36pm EST
Thanks for the responses -- they were better than I expected. Good, even. It's not been a good week (or however long it's been since I typed my first comment above. I am supposed to e starting dinner but ... I had come in from outside, just wanting to pause for a minute and was told I needed a shower, I didn't need to go to the grocery store and ... well I left before anything else was going to get judged, commented on or corrected.
Anyway, I've been trying to fine a Home Health Care provider to come in and deal with the wound care so I can take a four-day break to go to an event I had been attending annually until I became a full-time caregiver. First time to attend the entire event (last year, I managed a day trip). I have not been able to find anyone in our area to do that unless it was going to be full time/regular basis or I could meet some other condition... Even our county office that puts out a nice monthly mailer with some info and a POC for "Caregiver Respite Grants" has yet to answer a phone call or an email. I've been trying to reach them for over a week now. It's very discouraging. Not sure what to do about that, so if there are any suggestions or ideas, I'd be glad to hear them. I am going to try our wound center doc as well as my health insurance rep to see what they might have to offer. I'm not looking for grants or financial assistance, I am perfectly willing to pay out of pocket. I just want a break thats long enough to do some good.
I'm not suicidal. Just worn down, depressed, empty drained ... etc, etc. and sad that these events of the last four years have robbed me of my best friend and left me with someone, frankly, I actively avoid being around for too long. So maybe that's another thing ... how can I tell her that she is not helping me by evaluating everything I do and telling me better ways to do things, althernative ways or that I shouldn't even be doing them at all? That she comes across as judgemental and that only *her* way is the way to do ... anything? That how she responds to me makes me feel that she thinks me stupid and incapable of thinking for myself? A few days ago, I snapped and said something harshly to her that deeply hurt her feelings. I don't want to do that again. But I think its got to be counterproductive to keep internalizing everything as I know I am going to explode one day and that won't be good for anyone. I just don't know how to gently tell her to try to do a better job of keeping her critiques, criticisms and improvements to herself because I am oh so very tired of it.
I know I don't *need* to run to the grocery store ... How do I tell her, a. I'm not asking, just telling you my plan and if you don't stop thinking my plans have to meet your approval then I am going to stop talking to you; and b. it's not so much a trip to the grocery store as it is just an escape from here -- a chance to be somewhere other than here if only for a few minutes. It's hard sometimes -- when I get in the car -- to resist the urge to point the nose of the car North by Northeast and go home (I'm from northern New England and lately, I've been a little homesick)
Thanks again for listening. I'm am going to try to not ***** up the jello tonight. again. (how do you ***** up Jello??) Well, apparently I did.
Pete359, September 12, 2020 7:56pm EST
Just shots in the dark here ...
Trying to line up some skilled nursing help so I can take a couple of days off (after 4 years of unrelenting caregiving ... on top of the 30 years of the rest of it ... not that it was much, but still ... How many fairly new husbands have to find the nearest ER and explain why you need to deal with an explosive BM for your wife while on the road ...) anyway, so I'm having a difficult time lining up skilled nursing support to ennable me to take a weekend off for the first time in 4 years... lots of song and dance but so far, no help. So much for caring for the caregiving. I firmly believe that all this concern for caregivers is complete bullsh1t. We are alone. Its up to us and whatever strength God has endowed us with. No one is going to help. There is no cavalry. We have to reach down and find strength within because there is nothing else.
It does seem to help to broadcast in the blind, though. I am not expecting answers. I do not expect anything to improve. I am just keying the mic ... There will probably be no further transmissions ...
God be with you all.
This is Pete signing off.