I suppose this would apply to ms. too, but it is what it is.
Before I entered that stage between dreams and being awake this morning I really felt benevolent toward H.
Only to find out that this was the day that he had left poop on his pants, on the sheets, etc.
Okay, I spend the day laundering all of this. Finally get to go to the supermarket. It is bright and warm and I am shopping for a decent dinner. I have chronic migraines. Those of you who have them may understand, those of you who have not, I pray you never have this experience.
I come home with dinner AND a throbbing migraine. Does H want to eat, well, maybe yes and maybe no. It turned out to be no, but not before he gave me the "royal salute"; and I gave it right back to him. From there it did not go well.
I have been a phony baloney for two years now. Most of the time I can smile and kowtow but today could not.
vent away Abby. So sorry your are having a tough day. Funny you mentioned the phony baloney. Sometimes I think I am a phony martyr. a goody two shoes for doing it all "right"
When I was overtired or not feeling well, my patience level with Steve dropped significantly. Listen, it's a superhuman job to keep it together even if you're feeling your best. Migraines run in my family (thankfully, I've been spared) so I understand how hard it is to function when you're suffering with one. The last thing you would need to deal with is a spouse with dementia. About all my relatives could do is take some Excedrin and lie down in a dark room.
Abby....We all have those days in one way or another. I'm sure you do the best you can and don't beat up on yourself. Somedays can be so bad you just want to get in the car and go who knows where...but, it would be any place but where your spouse can make matters worse for you when you are giving it your all. This is one job that can take it all out of you and when you are in pain it is unreal.
i wouldnt be surprised to hear that the migraines are brought on with the stress of caregiving. try to be gentle on yourself and give some needed breaks during the day. those few minutes to relax can be crucial to us under stress.
Sorry you had such a tough night Abby. I too have chronic migraines, my heart goes out to you. Did you feel better after returning the "royal salute"? <grin>
My keyboard does not have the "heart" that yours does....
I just could not help it! I have never had children, but tonight (Tuesday) I again told H, pull up your pants. Taking them off, and these are what I call pajama pants, is a new thing.
F---you was his response. But it was said like a child might say; in my imagination anyway. Kind of small and whiny. So I said, "that is not nice and you need to pull up your pants".
On one hand, I try to deal, on the other hand, reconciling this ---- with the man who once did any number of things is really difficult.
Abby, I wasn't blessed with children, but I did plenty of diaper changing for the little ones. Still, it doesn't prepare you for having to diaper the love of your life!!
I understand exactly what you are saying. It is beyond difficult to see the people we loved demise before our very eyes. My Lynn was a master builder, the day he didn't know how to use a hammer, I died a bit inside. It was just the final blow, this disease takes and takes and just when you think you can't tolerate one more loss, it takes some more.
If it brings you any comfort, after immeasurable losses, year after torturous year, I have reached a place of peace. I find great joy in my visits with Lynn, even though he is now bedbound and needs total care. I thought for sure stage 7 was going to be my complete undoing. But it is not the horror I always feared it would be.
This has nothing to do with the disease, and more to do with the growing and changing I have done throughout our journey.
The things that use to trouble me, now I actually look back on with fondness... I know, crazy right!? It isn't so much that late stage is "easier" it isn't. It has it's own heartache and difficulties. But, having survived all the earlier stages, the losses don't become easier to bear, just expected. I feel such empathy for all of you in the earlier-middle stages. It is so heartbreaking trying to deal with each new loss, it is exceedingly overwhelming! As much as I despise late stage, I just couldn't go back.....
You have a whole lot of sisters now ♥
Ps. you can always make a heart like this <3 ...not as pretty, but still a heart :)
Abby, like you and Nikki, I have no biological children. However, as the disease progressed, Steve became my child. I think you will find that as the years go on, you will find that place of peace that Nikki described. Steve has been living at the ALF since last August, I still am amazed every day at how content he is now after years of arguments, anger and aggravation from AD. Acceptance, good meds, and disease progression have restored his sweet demeanor. Hang in there, sister!
Jean21--I hope so too. Steve had a major med adjustment immediately prior to placement--so I don't know how much of the improvement is due to that vs the move to the ALF. However, the improvement is so dramatic that over time, I've realized it can't be just the meds--it must be that he's in a safe, supportive world now created deliberately for dementia patients. Lots more room to pace, only one level, staff that is trained to be upbeat and friendly, etc. There is no way I could have replicated that at home.