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Stroke Caregiver - male
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About nancyl

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    Senior Mentor
  • Birthday 03/20/1967
  • Age 53

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  1. nancyl


    Of course we all are bored. I don't have to much to do, outside of working my now half days and take care of Dan. We have our little routine, Dan THRIVES on routine - Me not so much. But I really can't complain , Ive had to redirect him a few times as to my expectations of his expectations. He like to move the bar. The compulsiveness. But its been so many years I do recognize it for what it is. And for as much as I complained about his desire to frequent the casino - it sure beats sitting at home and staring at each other... lol. Eventually here in ND we will get nice enough outside that at least I can do yard work and Dan can do his compulsive sweeping. Anyhow for the most part we are doing well, given the COVID lockdown. We have a roof and food and we are healthy . In reality we are blessed.... NancyL
  2. nancyl

    Sarah-- Im so glad a neighbor extended that wonderful gesture, albeit toilet paper ( who woulda thought in the past what a magnanimous gesture a gift of TP would be--lol). Renews our belief in mankind. I hope you are well, you have endured so much, I only hope that you have some "peace " . I think of you much more often than you'd guess-- that long caregiving road. Bless you girl.. !
  3. nancyl

    So far it is going well, we have our "issues" but for the most part we are doing well....
  4. nancyl

    Here it goes

    Due to the Corona virus - the nursing home had to close doors to visitors and no longer allow the residents to come and go. Dan had stabilized and done very well for the past 2 years. But the biggest reason for that, His time with me and him coming to my work and the large amount of socialization with our family. The new necessary mandates required the home to close their door to protect their residents for the greater good. I respect that 100%. But it left me with a decision to make . He is home with me. So far so good. I couldn't risk the absolute regression he would have made in the home - not coming and going not seeing me. And I knew that this was gonna be a long term lock down at the nursing homes- ( and it needs to be). So I did what is right for us. Bring him home. If it works, - great. If not then , after all this is over, we can return to the way it was in the future. I asked Dan one day, while he listened to the radio if he was afraid with all the news on about the virus and he looked at me and said - very afraid..... So for now, it is what it is..... no complaints yet-- We are fortunate to have options and I am thankful for that. Extrodinary times call for extraordinary measures. Like the rest of the world , we will stay at home and be hopeful and prayerful for the best possible out come
  5. nancyl

    If I had any wisdom I would share it .. I do not . which is both sad and funny. Your one of the get-er done ladies, I only know a few. I know you have the tenacity to accomplish all on your list. -- Big HUG -- Love -- NancyL
  6. nancyl

    Sarah-- So very sorry for your loss. You are a warrior- always have been. As others have said, you took such great care of Gary. You will carry on chin high - knowing you always did the very very best for Gary. Although I really don't reach out much anymore, you are always on the fringes of my mind. Knowing you and Gary have continued through life- one step at a time, has shown me my path of one step at a time... God Bless YOU and may God give you strength . Prayers-- NancyL
  7. nancyl

    My brother passed away

    My brother the one who was staying with me since Sept - passed on Dec 10, 2019. Bittersweet. We are all doing ok. It was hard on Dan - hard on me. But my brothers passing was not a overly long agonizing death , for that I am thankful.. Nancy
  8. nancyl

    True Sue-- unfortunately or fortunately depending on the vantage point..... I make a joke outta earshot -- my house is the place people come to die.. I recognize thats a warped sense of humor --- but warped sometimes helps get you through. I am most definitely am trying hard to "keep me" and feel like I have . Taking care of my brother who is "mine" raised by my family similar values / issues . Has taught or reminded me that when someone is sick or disabled they can become selfish, they feel that badly. They forget the "niceties" . So in that aspect Ive been able to remember Dan feels and acts the same way. So that is incredibly helpful in my caregiving journey with him. In all actuality - Dan is doing well, he isn't as rough. Of course overnight after I clean him ( Dan ) up to go to bed I kiss him on the cheek and repeat to him -- be NICE -- Be Nice..... And he does have some staff at the home he cares about and has some connection - but I do reign supreme. Although sometimes I wonder if its that he cares or pretending to care... Cant tell - but -- Hey I guess Ill take it. It is what it is !!! -- No one on this website has ever said that.
  9. nancyl

    here I go again

    Im not sure how to write this--- do I take the high road ? Or the low road... ? I guess my present situation is the "BOTH" situation. My brother has been very sick . He ultimately has been diagnosed with liver cancer with no hope of effective treatment. It is terminal. He was given approx. 4 months to live. Guess where he is at ? YUP- my house. He is a bachelor, so no wife or kids to lean on. My older sister don't want him dying at her house and the rest of the family just shrugged their shoulders. I don't want the guy to feel unloved or uncared for. So I have him here until it gets to the point of nursing home necessity. He was diagnosed with diabetes about 5 years ago -- was always active and healthy. Not overweight and he was a very active sportsman physical worker kinda guy. But here we are. His energy level is nil - . I'm happy enough to help him , but of course Dan who is in the nursing home - is smelling a rat. Is feeling like - HEY - Nancy can take care of him- but not me, her husband! So far he is understanding - sorta - . I understand his resentment ( and its not as overt as I may have made it sound). Ive been doing ok with my depression and trying to ration my energy . But having another person to care for is more than I wanted to do. But DAMN no one gets to choose - yes I could just shrug to and say gee- I'd like to help , but ( insert excuse ). But Im just not that person. Poor boundaries some people say . But I guess when I meet my maker I wanna have errored on the side of have done to much rather than the gal who wrings her hands and says geez, I would, but I can't, so I won't. But my brother earl is another eggshell guy . He has a history of tantrums ( thus bachelor) but he has always known his limits and would just leave when he felt anger. But now he can't leave. So far no issues - but Im pretty aware of his hot spots. My younger sister comes and looks in on him while Im at work for a hour or two. But boy when she don't have to she don't. Frankly Im feeling a bit used by my family . I somehow ended up taking care of all his work issues ( there is a lot to do - FMLA and leave benefits- insurance etc. ) and just when I think I got something taken care of another issue pops up. And about 50% of his medical information and appts. we gotta travel 200 miles one way for apps and no matter what - that crap never gets coordinated. I made it clear to the family I DID NOT WANT THE LEGAL/ SCHEDULING / FINANCIAL -- But here I am .... I so smart - Ive been through it etc. etc. and honestly I am and I have - but that is their cue to just dump it on me. Any how Im just bitchin- and I coulda just wrung my hands and ran away. But if everyone had " Boundries " no one would ever help anyone. I hear people preaching that -- and I get that but when you truly think on it what is that? If Jesus had boundries- -----
  10. nancyl

    So happy it all went well-- your one tough lady. Many of us know that for sure... You've been there for us to learn those caregiving skills for our loved ones affected by stroke.... Get some need rest -- NancyL
  11. nancyl

  12. nancyl

    place to keep track

    one of the most useful aspects of StrokeNet for me has been the blogging its therapeutic and useful to see where we have been in the journey. And in general just to keep track of the daily SH-T that happens . Perhaps someone reads about our issues and feels less alone on the wonderful stroke road. So my entry is-- Dan pulled a oldie but a goodie. He tried jumping out of the car while out youngest was taking him home. Me and a girlfriend decided to have a night out , Dan was at my work, fully aware of my decision to go out with my girlfriend. Wasn't thrilled but seemed onboard. Beth came and got him , made the McDonalds run and was driving when he decided she wasn't paying him enough attention and tried to jump out of the car. Another car stopped and luckily a Cop was out and about and seen it. Ironically back in my working at the jail days I knew the cop. But anyhow- the cop did his best to deal with Dan ( Dan has no higher power he doesn't care much about anything ). Eventually with a cop escort Dan got returned to the home. And today we had his semi yearly meeting so tried to converse with him. He cried- ( sometimes his crying can be for the purpose of getting his way - sometimes its real) , everyone felt bad. And I told him for awhile he isn't going out. He goes out daily to either my work, my oldest daughters house ( not the daughter he tried the jump out of car with) and he also goes to the casino ( which has its own issues I do my best to balance) or out to our oldest daughters cabin. So this is not a deprived man, myself and his children have made sure he has a active life. But the man is so hard to be with. Many times mean as a snake. But he is Dad and my husband so we compensate and deal with it. In this instance not much can be done to remedy except not take him anywhere anymore. But the reality is we still will- its who we are. Of course not for a few days cause you can't pull this crap and expect a basic BYE of forgiveness immediately . So we'll move on from this. Like I said when I started writing this its therapeutic to write and documentation might be useful some day to some one. I wonder if there is a Guinnessbook of records for bad behavior - LOL
  13. nancyl

    We managed to maneuver out of that for now--- The no eat, Ive gotten pretty good. I keep reinforcing to myself- His Happiness is NOT my responsibility ... I trip up and forget sometimes, but that mantra has served me well.
  14. nancyl

  15. 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.
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