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Stroke Caregiver - male
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About nancyl

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    Chief Mentor
  • Birthday 03/20/1967

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  • Stroke Anniversary (first stroke)
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  1. scanning

    Dan likes to be busy-- I found the perfect pastime, he is scanning things at my work. It is entertainment for him. He feels useful and it is needed. Problem ? What!?? Dan cause a problem? LOL He wants to come everyday to my work.... Not practical. But I am doing my best to keep it regulated, in reference to my work. And he gets to leave the home 28 days out of 30, so he is not just wasting away in a nursing home- we will go to grandkid events or to my daughters house or cabin and visit. Dan is doing fairly well right now, we still go through the no eat no drink days. But not so much right now, I keep the mantra - "if God wanted you, he'd have you." He lost 2 uncles in the last month and is kinda sad, although we hadn't seen hide or hair from them since Dan stroked, so there is that resentful feeling , that you wish you could rise above. Its hot here in ND, But we stay indoors for the most part. The nursing home scratched Dans glasses so Im dealing with getting Dan a new pair, but even something so simple , with Dan and his OCD is difficult. Im thankful to have the nursing home, but at the price tag it carries and the amount of work I do in taking care of Dan am bothered by it. But my caregiving has to have some boundaries - or Dan will run me ragged and NUTS again. But gosh I feel guilty. My sister takes Dan to a movie on fridays , giving me that "day off" to work, and sometimes go out with my friend Wendy. Or just go home and vegetate - or like others net flix. Cant seem to get the ambition to go and do some good housecleaning- I got to go through stuff and PURGE. Over all my depression is better than last year at this time, so I guess thats progress, Im making a real effort to resign that this is my life, DEAL with it. I've put on a lot of weight - admittedly mostly alcohol calories.. LOL -- that is what it is..LOL
  2. Girl - I don't know how you do it. Traveling for me with Dan is so darn hard, and its more me than him that is the problem- lol
  3. Sue you have always been a inspiration and friend to me and many others. You've dealt with stroke issues as a caregiver and as a proxy survivor of it. It brings so much havoc into our lives, you have taught us how to live with it. How to survive it- how to grieve it ( grief the gift that never quits giving). Loneliness, the constant companion. But you have always shown us how to get "through it" you lead by example. And for that - I THANK YOU !!
  4. finally Dan takes some tylenol

    Dan fights all pills has refused all for about the last 2 years. This includes pain pills and the like. But when his brace got put on wrong it stimulated some really bad pain for him. It took 2 weeks of his groaning and I finally said- if he didn't take some tylenol I wasn't coming anymore. Blackmail basically. But darn it helped his pain. So for now he is taking the tylenol. Everything in our lives has to be dramatic. Simple tylenols become big issues. Strokes - can, in Dans case take away common sense. ON the other hand, he still thinks to look when ever he approaches the car for any leaks. Last night he seen one. Ill get it checked soon, so there is that. It always boggles me what he knows, cares about and what he doesn't . And it changes, about the time a caregiver adjusts to his demand , it changes.
  5. I just read this - Oh Sarah--- so wonderful.. God Bless You.
  6. Dan is having more trouble

    Since the AFO got put on wrong by the nursing home Dan can hardly walk. We make it a few steps and his affected leg just buckles. We have told the nursing home we want him PT assessed and maybe take a look at his AFO... Dan weighs about 70 LBS less than when the brace was fitted so maybe he just needs a new one. Pity cause the old one is a very good one. I was told they don't make them like that anymore. always something... right... lol
  7. Sue I just read this - it is beautiful and sad, thank you for writing it. It is such a reflection our lives. Nancyl
  8. So Dan is private pay at a nursing home. I do about 80% of daily cares. The ONE time in the past 3 months I ask for nursing home to get him up and ready so he can be brought over to daughters they injure him. They put his AFO brace on wrong. It couldn't be seen how wrong because his sock covered it. He was telling me how bad his leg hurt, but ( pain in leg) thats common so I made him walk and the darn thing was pinching him the whole time. He finally wouldn't move so we sat him down and my daughter was like maybe something got inside the brace . unfolded his sock and seen the brace and his "pinch" mark. Now once the sock was not covering the brace one can clearly see it was on wrong. Im just having such a hard time fathoming anyone with any intelligence at all not seeing it was wrong. And if you can't figure it out ASK . Clearly the person who got him ready had not any experience with Dan. He wasn't wearing briefs, which I discovered upon the return to the nursing home, and his urinal was in the bathroom _ DIRTY-........ Now Im feeling guilty - like now he is actually getting hurt at the place that is paid a lot of money to care for him.....UURRGGHH frustrations . Yes I WILL BE TALKING TO THE ADMIN OF THE HOME.
  9. Ive managed to confuse myself - I have like 6 different blogs all with entries in them... no rhyme or reason except my own randomness- it there any way Admin could combine them into one that is just NancyL blog? Dan has been doing well ( as he can) he loves coming to my work and putting stamps on envelopes. It is a very precise process for him. It seems to give him a avenue for his OCD -- puzzles could do that for him, but , puzzles aren't "productive" - stamping is. lol I am very fortunate to have a boss who allows this, and its a balancing act to keep Dan at bay so he doesn't manipulate his way into it becoming daily...
  10. So this has been going on for awhile. I am sometimes embarrassed to be seen in the community with Dan. Not because of his behavior ( he has many). But because i think I feel his disability is a reflection upon me/ us as a couple. Kinda like GOD passed judgement and we were found wanting. I KNOW it is ridiculous ( it truly is) . I have always kinda felt like this. But I guess as I am moving through my thoughts and feelings of life i have decided to focus a bit on the problem and put it in writing - ( via stroke net). Dan is very well taken care of , he is loved . But I kinda hate going out in the community with him. Part of this is in our little town of 12,000 people chances are you meet someone you know everywhere you go. Anonymity is impossible. I get tired of the questions - How is he, where is he, . And no one has ever made me feel like a inferior caregiver ( except Dan). I think some of it is - for a long time I pushed so hard to get Dan to want life, accept his condition - BE NICE- but all the manipulations he could pull he did and does. He simply hates for me to have a life. I try to get him to come sometimes when a group of friends do happy hour - he refuses - to loud. But he can't hardly stand me going either. When I take him back to the nursing home he will kinda pout. He has made references to wanting to go home live with me and my sister- but I am sure that will just be the past repeating itself. If it was gonna work to have him home it woulda worked in the first 4 years I tried so hard to care for him at home. I imagine the shame or embarrassment i feel is some sort of self reflection of feeling the failure of being the great wife who did it all. And yet I would never never never recommend anyone try the intense 24/7 care of a individual who is so difficult. The food strike ( does anyone remember those? ) the seething anger that is usually just beneath his surface. The refusal to allow happiness into his life. The controlling nature . Everything has to be exact or he tantrums. I took him to MT this past weekend to see our daughter, he did something there that told me, nothing has changed. We were at my daughter In Laws ( great people) Dan refused to go out and tour their farm ( remember he was a farm boy) but nope he wasn't going out . So after lunch everyone else went outside except Dan and I, we watched a TV show and I fell asleep. Darn if he didn't have to wake me just because. I woke to HEY HEY. What I ask ? no reply, then the LETS GO started. So we left. Returned to the motel. It wasn't all bad and he got as much out of the visit as he put in, which, was probably all he is capable of . But I have a lingering resentment over that disturbed nap. Mostly because he can't just see me content. An of course he is not always like that. He does try. My birthday was March 20 - when I went to pick him up - he looked at me and said - Happy Birthday- and their are times he is so totally nice and tells me thank you. Like always I continue to look to him for affirmation - something even pre stroke he didn't give much of.
  11. dancing nancy bear

    I'm still here... no real changes... the nursing home makes a vague effort to try to assist more... but dan does a god job with his OCD and control mechanisms .....so i keep dancing... Nancy the dancing bear...lol.....My routine is the same , get up take grandson to school (for now - my daughter works early and his dad fell and broke his hip at christmas, had a replacement done - is on the mend.) drop him off, go to work. work till noon, get dan his mc donalds ( i give up fighting about his food) get him up, wash him up ( unless its a shower day - 2x per week ) then he will either sit up for a time and play checkers on his iPad and watch tv or i will take him to my work (I work as a law assistant , it is part of my low pay, but freedom benefits agreement i got with the boss) he'll hang out if he comes to work with me. Then we either get mc donalds and go to my daughters house or back to the home. If we go to daughters house i cook there and he eats there. then back to the home where i wash him up and get him into bed.....then i either go home or once in awhile go out to my local hang out ( bar) have a few and go home... thats my life in a nut shell-- for now I seem to be able to manage.... my anxiety and depression is sorta under control--- but I still lie awake with the what ifs of the world... thus the reason Im posting on stroke net at 3 am.... lol--- I play with the idea of caring for him at home ( mine again) but know although it makes great financial sense it makes no mental health sense . Dan has the capability still to mentally devastate me. ... and thats a road i can not walk...... old timers on here remember that... lol.... life is manageable, not good or great , or fun , or full filling, but it is fine line manageable..... or as everyones favorite saying ------ IT IS WHAT IT Is.....
  12. prayers -- nancyl
  13. thinking of you ....nancyl
  14. wonderful !!
  15. i have no words - sorry-- in my thoughts-- nancyl