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.....
So obviously Dan didn't manage to end his life. Which is good. I am still plugging along.. still go get Dan almost daily take him out, feed him is Mc Donalds etc. My basic perturbness going on right now is the rampant laziness at the nursing home...... OMG I do at least 80 % of Dans daily cares-- but getting a floor washed or vacuumed is hard, I'm gonna need to bring my own vacuum soon. I clean his bathroom , it takes 15 plus minutes to get a call light answered -its ridiculous. There are good , caring hard working staff there- but lately the lazy are eating through the good ones.
Leaving me with the dilemma , every time i take them to task, it creates this passive aggressive thing. The thing the staff love to say is, Dan won't let me. Which has been true on occasion but never has he stopped anyone from delivering towels and wash clothes. "Dan won't let me"- I want to haul off and smack someone, everytime they use that excuse to not even try. During Dans recent depression - he did refuse everyone and everything.... But now its like the staff have figured out - just say - "Dan doesn't like me" and its like fairy dust- magical , they don't have to. So I do, I don't like it , but I do it because it is the right thing to do. Sad part is- this is the best nursing home in town... I shudder to think about the others.... I can't, - couldn't care for him at home- his OCD is very difficult - no doubt, but GOD Im still doing it. I have seen staff walk right passed his room with both his lights on - carrying garbage. I have directed them to the fact both lights are on, was told essentially the garbage is more important. GGGGRRRRRRR. When I do finally decide I have had enough, then what?
Dan decided to eat some soup, some jello and watermelon-- he has drank some water. So for now - until the next time, he is in that undecided mode. He only took nourishment because he wants to be able to go to church. I had told him I can't take him as weak as he was, so he had that little bit of nourishment. Down and up -- up and down....... still - a waiting game.
Watching Dan is like watching a train wreck. He is still refusing all, except ice water. he drinks 3 ( sips) at noon when I come visit him. Has to be ice cold. Thats it. No food- no other liquids. I wonder how long this will take? Im scared, for him and for me. This is slow and scary and not a thing I or anyone can do to stop it. And I wouldn't if I could, its not my place. But I am hating the watching of it. He doesn't talk much or want much. Just lays in bed, no TV, nothing just lays and looks outside - waiting to go home. ( heaven).
The gal who does baths at the nursing home said he is considerable weaker - needs much more assistance. He had a pretty good bond with her. He had given her a big hug and told her she was a wonderful person. - He is saying his good byes and acknowledgements. In addition to his nursing home staff, he has the hospice staff.
I have questions, no one can answer- Should I go more often ( i can only handle the over the noon hour visit) - more than that just busts me. Should I cry in front of him. Does it help him, does it hurt him? Ive asked him he just looks at me and shrugs. Should I not enjoy anything ? - I know the answer, but these moral dilemas. It hurts to laugh, then I think - Dan can't laugh, and he isn't - he is trying to die.
Then I think - Nancy you should be up sitting with Dan. Then to myself I say- I can't it hurts, and one part of me says - go anyways. The other part says - really how helpful is it to yourself or Dan to just sit and cry. I want Dan to have no more pain, I want him to be whole again, I want him to be happy again. I want him to walk , work and enjoy life again. To obtain any of those things Dan can not do here on earth ( he tried, I know he did). So he is doing the only thing he can do. He is the conductor to the train than I am watching slowly derail.
I can't offer him anything, that I haven't already offered... I tried caring for him at home 100% - that didn't end well. I tried taking him places, showing him things- I tried family trips, I tried watching grandkids at their events, I tried the movies, I tried good food....... And so much more than that. None of it was want he needed. So he has made his decision, and the family and I wait and watch - and mourn what is coming in it's own good time.
I would say my heart is breaking , but its broke already.
still at it with Dan--- has been refusing all medications for weeks and He will go 5 days eat nothing drink nothing than have a day where his mood is better and he will decide to eat and drink. Then the next morning it is right back to his "death march". This is a absolute compulsion, he has no control over, knowing that doesn't help.
It is a exhausting mental roller coaster. The youngest daughter Beth - is so heartbroken and over stressed. As a family - mostly Beth and myself we have made sure Dan has made it to mass every Saturday evening . This weekend we all have other plans. The kind of plans that don't involve Dan - unfortunately - I hate to write that but taking Dan anywhere has become taxing emotionally. We need a break.
Dan is cognizant, even polite ( except about his acceptance about no church this Saturday )-- I feel like part of this is his need to control, and another part is his sincere wish for his life to be finished. For him he feels he has no quality of life left. I agree with him from his point of view - knowing him to have been such a physically active and driven person. From my point of view - he has family who loves him, wants him. But continuing to dance to his tune has been a arduous journey, with not much of a quality of life for his family either. I surely thought our Stroke Journey would have been a better journey- it's not ---- not for him, not for me and not for his family. The depression the stroke has gifted everyone with is astounding, and not in a good way. Thanks everyone for your support.
Only a few of you even remember me --- Im Nancy, I've been in a good long fight with my husbands stroke 6.5 years ago... He was a young stroke victim, not the usual stroke MO-- he tripped on a rug, dissected his carotid artery ( tore on the inside). it caused a massive stroke... later tripped of seizures ... through it we did amazing things in an attempt to "live" some . Previously all we ever did was work, work and work. We have 4 great kids all adults now, all married. Dan has had all major stroke side effects, ( aphasia and partial paralysis) and plenty of brain damage to boot.
He has made the decision to quit eating and drinking. He quit taking his meds 3 weeks ago which has started the seizures that took forever to control - to rear their ugly heads. He hasn't truly eaten in weeks but has had sporatic meals on occasion. He isn't looking good. Is remaining remarkably cognizant and is ADAMANT this is his wish. He had me open the blinds up wide at the nursing home so that he can see when god comes for him.
He has thanked everyone- understands the pain we all feel , but is adamant in his wish to go home- heaven.. I wouldn't dream of taking this away from him. It is his life , his choice. I have the usual doubts of -( nancy)-- I coulda tried harder, been nicer, done more, coulda, coulda, coulda..... but I am exhausted . And I tried everything. we had resources others don't have, and none of it helped.... I quit my job stayed home, found a better home to care for him in home. hired staff, tried to return to work for my own sanity, hired ,fired staff... Dan didn't like anyone.... he was mean, he would refuse "whatever"... I played the kiss- his "a--" ended that chapter with him in the nursing home and me in a mental hospital.
I go everyday at least once, more often than not twice to see him. Would bring him his Mc Donalds daily.. But over the last six months have faltered some, its just so HARD... He would attempt his manipulations in an effort to get out of the home, not asking much time out from there. But I couldn't always do it, I have a job, Im tired. ect. ..... now he made this decision and we are at the point of to far in, I believe he is set and I believe this is what he wants and I believe the "end" is near.........
I am devastated but elated all at once.... Elated because his pain ( and he has pain) and his suffering will come to a end. Devastated - to lose again what I already lost 6 .5 years ago my friend, my lover, my husband. He was already gone, but now he will leave me again. But I would never choose differently for him- I did once- I won't take that moral responsibility again.
I write this cause, this site has been my "ear" its a pretty complete log of my stroke experience - ( from basic start to now finish) not as the actual victim but as a person who loved and cared so much for a person affected by stroke.