But life is very difficult right now because of Mr. AOW's condition post-stroke. In fact, compared to the kind of life this household was living a year ago, the situation now is hideous.
Read the update as to why I'm barely posting or commenting here at IBA these days.
And know that I'm still around as much as I can be.
Prayers appreciated.
27 comments:
Very sad. My prayers go out to you and yours.
I know somewhat of your problems, but it's been w/both of my aged parents.
You have to take care of yourself also. Being the care-giver is very stressful. My GP told me to be aware that care-givers can get very depressed w/o realizing it.
Friends seem to forget about you when you end up in an uncomfortable (for them to be around) situation.
SamenoKami,
The peeling off of so-called friends has been one of the toughest aspects of this hideous situation.
Mr. AOW was very social before the stroke. Now, he's nearly isolated.
I think that I am clinically depressed. But I hate taking pills, so I'm trying to handle the depression in ways other than pharmaceuticals.
AOW,
God Bless you and Mr. AOW. I've been through this with my father. I helped him learn to walk again, but then he gave up, which was very frustrating to watch. I was not the primary caregiver, and I have no idea where I would get the patience and strength needed, if that were required of me.
You say:
Because Mr. AOW's left hand and arm don't function, his managing the hand-held urinals present problems with spillaga.
Mr. AOW says: "It takes two hands to hold the whopper."
Dear Mrs. AOW, thank you for sharing this part of your life with us. You may not realize it and it may not feel like it---but you are a beautiful example of love and committment.
Your courage is humbling.
God bless the men at the VFW! After my dad's stroke, they were at the hospital almost every day, encouraging him and keeping him laughing.
Gentle hugs for you both
Pastorius,
That's what Mr. AOW says, all right. LOL.
I have no idea where I would get the patience and strength needed, if that were required of me.
I'm not very patient. In fact, I've had some ugly meltdowns, especially during fecal-incontinence episodes. Fortunately, Mr. AOW accepts apologies.
We had "an incident" on Saturday night at our local VFW. The end result was that both Mr. AOW and I ended up lying on the parking lot's pavement and rolling around in urine. Thank God a couple of the veterans could pick Mr. AOW up off the ground and set him back safely into the wheelchair.
In Mary's Image,
I'm a tough ol' broad, but I cried when I read your comment.
I'm not all that courageous, but I am determined to give Mr. AOW the best possible opportunity to have a decent life for the time he has left here on this earth.
A couple of people have advised me to divorce Mr. AOW for financial reasons. Can you believe that? When he's getting better and able to be at home and even go out to dinner (tonight, for our anniversary)? I'm sure that these people meant well with their advice, but still.
AOW,
You said: We had "an incident" on Saturday night at our local VFW. The end result was that both Mr. AOW and I ended up lying on the parking lot's pavement and rolling around in urine.
I say; That must be very humiliating.
May God watch over both of you and shelter you both in his arms.
Your devotion and effort demonstrate knowledge of "The Razor's Edge". I can think of nothing more commendable or honorable.
I wonder if I could ever match up to what you do, and I pray I never find out
Pastorius,
Actually, we found the incident pretty funny. One of the guys at the VFW said, "What are you doing down there on the ground? Checking out mufflers?"
Fortunately, neither of us was seriously hurt, although Mr. AOW has a skinned up knee and hand. And my back isn't quite right. I slowed his fall, but I don't have enough height to keep him from falling.
Epa,
Thank you.
I tell you this: you don't know what you're capable of doing until you're faced with the task.
By the way, Midnight Rider and I end up falling out of VFW halls all the time.
But, of course, it has nothing to do with having had a stroke.
VFW Halls American Legions Bars Pubs Fire Houses Gun Clubs I've fallen out of some of the best and been thrown out (physically -- nothing like seeing a steel door coming at you and your feet aren't touching the ground) of the worst.
God bless and keep you and your sweetheart AoW.
" on Saturday night at our local VFW.". . .oh my . . . yes AoW, you need a hearty sense of humor else you'd go insane.
Incontinence is one thing - fecal incontinence is a whole other ball of wax. I've just e-mailed a lengthy letter to your e-box about living with my own family issues w/ stroke . . .don't get me started on the in-laws issues with fecal incontinence. Think active gamblers at Atlantic City Casino . . .not a pretty picture.
Anyway - we're with ya!
HRW
BTW: HAPPY ANNIVERSARY!
HRW
Mrs. AOW,
I too am dealing with life as a caretaker. My thoughts are with you.
Recently I took to venting on an Alzheimer's caring site, ... but I got kicked off for cursing!!! :)
Clearly the owner of this site knows nothing of what it is like to wake up to feces all over the floor.
I reserve the right to cuss all I want! I took mom out of a nursing home because they almost killed her. I take full responsibility for the life I am choosing to lead right now. It is my decision to carry this cross. And if I want to say fuck, at times, I will!!!
Which brings me to a funny anecdote. I hate big rigs when driving. I've been caring for mom for almost four and half years now, and she is, like a child, very gullible. Those few times we have to ride the interstates, and the big rigs would do something to tick me off, like pass me and then slow down, I taught mom how to flash them the finger when we passed and to scream "Fuck you!" This from an 83-year-old Catholic woman, who never cursed in her life:) And then we laugh! Me for the sheer fun of seeing my elderly mother with her shaky hands, cause she has Parkinson's too, giving the middle finger to a truck driver, and her, I think, for the liberation she must feel at letting it all hang loose at her age!
I am so sorry to hear that you both are dealing with this daily struggle. Our family had to go through some of this with my dad, but not to the extent you describe. My mom (82 at the time, he was 90) also got him out of the nursing home, which was literally killing him with boredom, and threatened to take him home if they couldn't put him into a secure setting in our local hospital. Fortunately, military TriCare covered it. She worries the same thing will happen to her, and my brother and I try to plan ahead and should at least be able to keep her in her home. (She might also go for the flip-truckers-the-bird game.)
Thank goodness for the VFW people, they are just the best, aren't they. Even faithful friends can't be there all the time and you need all the help you can get.
You can vent all you want here, for sure we're all used to people saying "fuck" for whatever reason. I understand you don't like "taking pills" but you might want to ask your doctor. There are meds such as lorazepam that are calming and can help with sleep without troublesome side effects.
Get hold of all the standing/walking/reaching/grabbing/etc.-aid gadgets you can. When I was laid up also in a living room hospital bed with a cracked C2 vertebra I looked like Inspector Gadget until my mobility improved.
RRA,
You have to find humor where you can. At least I do.
I bought mom one of those walkers on wheels, but she won't use it, cause she thinks it's a shopping cart:) I got tired of arguing with her about it. Even took the basket off it, but I guess because of the handles and the little seat, she swears up and down it's a shopping cart and she's not going to use it.
So we stick to a walking cane, and then a wheel chair when the walking distance is too much.
One of favorite jokes with mom is telling her "You can say that again!" :)
She doesn't get it, but it cracks me up all the time!
Actually, my mom and I are planning on swiping a shopping cart for her walking purposes soon as we decide which one she likes best. Right now Trader Joe's is in the lead.
Sometimes you really do have to give them a nudge. I was using a cane before she did. (On the other hand, she hasn't my talent for head-on car crashes.)
HRW,
I see your email in my inbox.
Will get to replying as soon as I can.
MR and Pastorius,
Mr. AOW was a bartender at our local VFW before his stroke. Rarely did he have to bounce anyone out.
He worked his shift until midnight on September 14, and the stroke hit him at 1:25 AM on September 15.
American Rose,
Recently I took to venting on an Alzheimer's caring site, ... but I got kicked off for cursing!!! :)
If anything sends me off on a cursing steak, it's feces all over the floor!
Thank God, those incidents are very rare now.
You'll understand when I say that it's horrifying to watch a CNA diaper one's husband. And Mr. AOW just "let" the changes happen. Seeing him lying there and totally dependent is a picture I can't get out of my mind's eye.
RRA,
I wish that Mr. AOW COULD walk with a cane! Even with the $1600 AFO brace and a quad cane, he can't move without assistance from another person.
We haven't been to the supermarket yet to use the handicapped carts. With his left neglect, Mr. AOW is dangerous behind the wheel.
American Rose,
she is, like a child, very gullible. Those few times we have to ride the interstates, and the big rigs would do something to tick me off, like pass me and then slow down, I taught mom how to flash them the finger when we passed and to scream "Fuck you!" This from an 83-year-old Catholic woman, who never cursed in her life:)
LOL! Great story.
Mr. AOW let "fuck" fly a lot when he was in intensive care and the nursing home. He got scolded a few times and responded by giving the CNA's the finger. Then, they laughed too.
Mr. AOW can be childlike at times (probably because he has to be so dependent), but he's rarely gullible anymore. Still, I won't let him have a credit card. Just a precaution I take.
Mr. AOW and I had a wonderful dinner out last night in celebration of our 38th anniversary. Mr. AOW even had a mixed drink -- supposedly a no-no, but we made an exception on our special day.
I dressed Mr. AOW in one of his favorite Hawaiian shirt, and he wore his heavy gold chain. I tell you, he was knock-out handsome!
Tonight we venture out for graduation at the homeschool group.
Getting the nursing home to release Mr. AOW was a Herculean task. They said at one point, "Isn't there a pool of money we can get?"
Thank God that our family doctor was willing to step in and release Mr. AOW to go home. He's gotten much better here than he ever would have in the vortex of a nursing home -- even though the nursing home he was in was quite a good facility.
Mrs. AOW,
Mom has lived her life. I can't imagine losing loss of my body at the age of 59!, an age I will be in seven years!
Please continue keeping us updated, and as RRA said, don't hesitate to vent here!
You are in my thoughts. I'm not a religious person, though I have attended mass for four straight weeks in a row now! :) I will light a candle for AOW's continued recovery tomorrow night.
A Hawaiian shirt!!! And a gold chain!!! My kind of guy:)
All my love,
Rose and Elisa (my mother's name:)
American Rose,
I'm late getting back to this comments thread - internet connection issues.
But I hope you see my Thank You here for your comment(s).
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