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Stroke Caregiver - male
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About nancyl

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    Senior Mentor
  • Birthday 03/20/1967

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  1. nancyl

    As Sarah said-- vicious cycle

    I read our Sarahs reply on her latest blog. Vicious cycle she said. Perfect wording for our lives. I to, although have come so far - feel that vicious cycle . I get up go to work, go for lunch go get Dan from the nursing home. Usually have to fix something - his glasses , pick something up off floor or figure out who he is mad at and why. Its kinda routine thing for Dan to always want or need someone to jump. But I don't dwell on it like I used to. Then we leave the home, go through Mc Donalds to get his daily meal ( the only thing he will eat). We then drive to the house so Dan can eat his meal while I run in and check on the cat and the house , pick up mail -- etc. Then him and I go to my work - he goes and sits in the bathroom for like 1/2 hour . Comes out stamps the envelopes of the mailing my boss and I completed in the morning . Then he scans old legal files for about 3-4 hours. Then to the bathroom for another 1/2 hour ( the more I hurry him the slower he goes). Then we leave work. Then I'm faced with - nothing - nothing to do - of course there IS something to do , but we've done it all so many times before. Go out and eat, go see grandchild ( who incidentally usually is never home cause he is a busy boy)- lol. I could and do take Dan to the house... Unload wheel chair , walk him in - maneuver the steps -- try not to let the cat out , crap! there goes the cat-- lol Back to the bathroom - out- watch TV ( right now when weather is nice , we sit on the patio ) then Dan wants to sweep the patio. Go get the broom , sweep up and dump the stuff Dan swept up.... Then we head over to Mc Donalds - Dan gets his meal and I take him back to the home... At the home I wash up his torso, underarms , groin etc. lotion him .. Put clean shirt on him, then he sits in the bathroom for- I'm told- sometimes- hours. After the washup is done, I leave -- it's usually like 7pm then. So sometimes I'll go have a martini and the only bar in town that can make one - or I'll go home and make my own. Then I graze from the fridge -- lol--- thankfully now with the weather being nice I'll sit out on the patio water the plants and watch the cat.. In the winter I just go to bed and watch TV. Im not sure if Im content or complaining at the time I am writing this - lol---- I guess both. I like the fact we have established a livable routine for the most part. But the pure predictability of it all--- grrr and the waiting and always looking for the next thing that dan needs, a kleenex? another bathroom break-- oh pick that up ? it bugs you..... ?? So it is a vicious cycle ------- I guess its the responsibility of it all. Its hard -- I miss being able to just go- no thought of last time he has used the bathroom, what has he eaten, should I expect a mess? Fitting the chair in the car, remembering the cane--I have managed to overcome a lot , So I imagine this to shall pass-- lol . Actually Dan has a new desire on the horizon ---- Gambling has raised its ugly head..... He wants to go to the casino ( 2 hours away ) a lot--- So Im trying to keep that little addiction from running and ruining our lives.... He has always liked slots a little , but right now - he would live there . Funny - the mans in a wheelchair , can't hardly talk but still gets his way-- But not always- He is playing with the" no eat card" - if I don't take him. HMMMMM we'll see how this plays out.
  2. nancyl

    thinking of you!!
  3. nancyl

    just checking in

    Just checking in-- life has a way ,even as it slowly ebbs by, to all the suddens have passed. When I think of it ( like anyone- ever doesn't think about stroke devastation) -I do check in and look at blogs of people who have mentored me through the task of caring for Dan. What a job it has been and continues to be. We do have a routine and still i have obstacles with him, but it is what it is. My rope is much shorter now. Ive had to learn - to not care as much-- to accept - his life and his desire to live or have a quality of life so to speak is not my responsibility. It about kills me sometimes, but I push through the BS I have been handed and low and behold Im still standing. This entry may seen almost cryptic to some but a few " old-timers " will get it.... NancyL
  4. nancyl

    All I can say is WOW--- and WOW again...... How you have done it is beyond me... Nancy
  5. nancyl

    wow time has passed

    I guess I haven't anything fantastic to say-- I just realized it had been so long since I checked in . Its been a cold LOOOng winter in North Dakota-- although sounds like it has been for all in the USA.... Dan is doing alright--- the fiascos of the nursing home continue... He taught the aids and admin a lesson . He is very OCD - he asks the staff to take garbage out with them when they leave the room. They did not, kinda a passive aggressive thing with the staff . apparently it got left overnight, so the next day he flushed the garbage down the toilet, plugging the toilet. So they take the garbage now when he asks. Typical Dan -- Lots and lots of staff VS Dan power struggles . I just chuckle - anyone fighting with a brain injury - aka stroke . Is gonna lose. Hope all is well... NancyL
  6. nancyl

    Peace that is, at the end, what we all want-- Im so glad you have that. William is at peace, you know where he is and he is OK, he doesn't need anything. Thank You So much for the update. Since his passing, I've checked a few times - Im so glad to have heard from you. Thinking of you..... NancyL
  7. nancyl

    I am so sorry for your loss, you named your blog "it is done".... I get that, on so many levels.... Thank you for always being there- thanks for your intelligence and sharing of your lives. Thinking of you.... NancyL
  8. nancyl

    I'm so sorry to hear of your loss. NancyL
  9. nancyl

    I liked reading your take on the inside of a nursing home. It helps me to remember Dans issues there as well. Its probably why he refuses to leave or socialize. Although the other residents are generally pretty elderly - not many are anywhere close to his age. But still,- what do I know, I don't live there and it is hard for Dan to communicate complex things like what you are experiencing. So thank you for your hard earned insight... NancyL
  10. nancyl

    calm - warm thoughts -- being sent to you . Nancy
  11. nancyl

    Angel---your mine. Actually you are a angel to many of us. Always there with a reply and encouragement. You have led by example, and with love. None of us know- none of most likely want to know. Your the best - thank you for the update .... Nancy
  12. nancyl

    I have thought and thought on it.. For now Im leaving it alone... as in I'll leave him in the nursing home. We looked at another facility, but Dan said no, it was actually nicer and cheaper but he seemed frightened of "change" so I'll leave him where he is at . I guess at the end of the day, we are surviving. So for now I'll leave it alone. Routine seems to be his answer, so he does his scanning at my work, is well behaved while there. Dans money is attached to him, no getting away from that. His stroke was work injury related. So its all paid through insurance, its just wasteful.... but as with all things... It is what it is.
  13. nancyl

    Oh Ruth - - Bless you. If words were enough I would say them, they are not.... Bless you both --- Nancy
  14. nancyl

    Our particular steps of life are constantly moving-- Im not a huge Harry Potter fan , and haven't seen any of the movies lately, but I recall the first one. Where he is being shown around the school/ dormitory where he is told watch the stairs - it keeps changing. Like those moving stairs - we never know where we are gonna end up. Ruth I have always admired you. Without you and my other " guidance councilors" I don't know what I woulda done. I Agree with SassyBetsy - you are Bruce's Queen.
  15. nancyl

    Crazy Lady seeks advice

    Ok - input appreciated- especially those who have followed me for years - literally !. Its taken a long time for me to settle down and into my "stroke widow" role. I was pretty young when it happened to Dan and I had ambitions of my own- all flushed when Dan stroked. So after the 4 years of caring for Dan ended with me in the mental institution and him in a nursing home - I am debating bringing him home. Why - Im doing virtually all his cares and still paying the bill for his care. Im finding, I may, in a few years down the line end up in financial issues if I continue to payout for his care, and even though I have a great boss I do not earn but barley a 1/3 of my previous - before stroke salary. With all the constant care and paying attention needed I could never commit to a job like I had previous . The job I have now accommodates , don't pay well, but is very accommodating. And I feel the actual want to care for him again in his our home. I feel most of the "RUN" has been taken out of me. Im not running as much , given up the alter life I tried to have. Of course this will involve some planning and work , by no means is this gonna happen anytime soon. The home I have now is not handicap accessible , can not do long term care in it. So I would have to look at homes AGAIN --again history is repeating itself. So Im playing with the idea. Have not and will not tell Dan anything as I have not made a solid decision. I kinda feel like I don't want Dans story my story or OUR story to end in the nursing home YET. I recognise I may be repeating a pattern, but the pattern of everyday Nancy to the home to work to the home --- then to my house to sleep and repeat and paying a institution to do what I do isn't working either.... So for fun people digest this..... Yesterday the home had changed Dans bedding - YAH !!! so I notice the blanket on the one side the visible is hanging really low , so I figured I would pull his bed out and even out the blanket. I pull out the bed and his blanket on that side has like 2 feet on the floor.... Im like WTF ?? so they took the rectangular blanket put it on the bed wrong ( side ways) and figured the extra would just go away... I laughed so hard.. Went and talked to his nurse supervisor and was like - I don't know who special ed is that made that bed , but man if you can't do the most basic simple and easy job in the whole place - I pity the residents. I wasn't adversarial and not even angry - just the daily shenanigans of the home is so frustrating. They are having so much trouble as are all the homes hiring that a "warm body" is pretty much the only qualification. I just don't know that the home is the best for Dan at this point. Im sure he'll end up in a home again, but I guess Im willing to try again... but the decision is not made and a lot would need to happen if thats the decision. Im not in a hurry --- and yes to my long time stroke net friends please chime in tell me what you think. You know my history, you know ME and you know the STROKE ISSUES we all deal with daily.---- Nancy