Hello all.......Just venting........I'm losing it.....I am a nervous wreck today. Yup, trying to breathe and all, but it isn't helping...Probably good to breathe though....Just sent husband to bed for a nap....HHHHEEEELLLLPPPP!
AnnMW, whatever you are a nervous wreck over remember tomorrow is another day. Hang in there and try to relax, making yourself sick will not help. I am sending prayers, hugs and love to help you make it through this day. I am sur others will be along to help you and support you. Can you take a nap while your husband is napping?
Thanks all.....Nothing really different.....just so worn out.----Thought it would be a good idea to take husband to a friend's house for a BBQ last night. Actually it was her son's graduation get-together.....but ended up being mostly "grown-ups". I came home so exhausted from making sure he way okay all night.......getting food, feeding him, potty runs, keeping him away from the late-night marshmallow fire..........Everyone there mentioned how "good" he looked. I tried Phranque's trick of collecting money, but walked away with zip..Then someone mentioned that their is a "scary lady" who lives on our road.... This is the only thing he remembers about the party. Now he thinks the lady will be after us. We've only lived in the same house for 20 years, as has this woman, so it seems unlikely. I know he doesn't understand, but for some reason it is just frustrating to me today. I'm usually better at handling this............He's just all over the place today. Finally just sent him to his room.
I know this is the disease. It is just that some days it hits me more than others. This must be one of them. After losing both of my parents fairly recently and not having any of his family believe that he actually has this disease, I'm just feeling alone. My son is coming home from school for a couple of days this week. Hopefully that will help. He does understand as he's grown up with this monster of a disease. ---We go for another infusion this week too. Maybe the medical staff will entertain him for a bit.......He loves the attention, since he does have a medical background.
Did I mention that I made the mistake of going to the bathroom and when I had returned, he had eaten a whole chicken? I really wasn't gone THAT long.......Guess it was my mistake of putting it on the shelf ---ready to serve.......I can't keep up with his appetite and he's so skinny.
Sorry your day is crappy Ann. it happens to most ofus. one day good and we are so surprised then the balloon bursts and we are back to square one. hope he settles down and you can get some rest.divvi
Sorry this isn't a good day for you (((hugs))). It doesn't always help to know it's a disease and other caregivers have "lived" through it, too, when you're in a down day. Cry if you feel like it; scream if you like; take a deep breath; sit in a comfy chair and stare into space. Know that many care for you and are here for you.
AnnMW1157 ..... we're all there with you in what you're going through today (or surely WILL be in another day or two). Sometimes I feel really good about the way John's behaving....not such a good weekend here at this end of the county.....I don't even care sometimes. I seem to pivot between that and total frustration...then I'm lulled back into that comfy zone when he settles down. Hang in there. One thing for sure taht I've noticed, that every day is different. Hope tomorrow....or this afternoon is better. Love, Jen
Oh Ann sounds awful. I second Lmohr in hoping you have anti-anxiety meds. I don't know how I'd get through the really ANXIOUS times without Xanax. My dr gave me a prescription right after DH was diagnosed. It "melts anxiety" he said.
The party sounds exhausting. How does one decide when it's just too much trouble to take them to events? We haven't reached that stage yet but even at this stage it feels difficult and nerve wracking wondering how he'll sound or act.
Ann sorry you had a bad time and are exhausted it`s hard you want to go and enjoy the good times and it`s almost impossible, been there done that,I feel the frustration you have , sometimes it is too much for the lo to handle to many people and I know you need to make sure your lo is in a good mood so you forget about yourself
Ann, I'm sending you a good long sturdy coil piece of rope with a special knot at the end. The knot has soothing powers. I hope you've had a better day.
Ann, hopefully you have had a pill, a glass of wine, warm bath, a primal scream or a good cry and DH is asleep. You can feel our caring to face tomorrow anew. Kudos for taking him to party...for me that is taking way too much energy at this point. Find I am limiting social events especially at night...
Surprised that my DH is alive tonight...called me his old college girl friend's name this morning...we have been married 48 years.....hmmmm! Has anyone considered murder? Seriously, hope tomorrow is better for all of us.
I truly think any death inflicted by a caregiver would be justifiable homicide ...said it before...and I'll say it again. I'd insist a jury of my peers.... they would all be Alzheimer's Caregivers.
Thought about it a time or two when he ask where is wife is and I am the one he is asking. 53 years here. One night he kissed me goodnight and said I love you. Went to bed and was back in a few minutes asking me "where is she". I asked him why he kissed me goodnight and said he loved me if he didn't know who I was. His answer...I like to be nice and polite to everybody. Got to love them
Oh Ann, you sound exhausted, parties are no longer a part of our life. A bit worried how dh will handle the wedding, even though I have a plan to have a friend bring him home at the appropriate time. Try to get a good nap in today, with your son home, this might be a nice treat. Reach for the rope, girlfriend.
You all can make my so happy. Sometimes I feel like I'm the only one that doesn't have patience. Some of you talk about your spouses sleeping all the time. Oh, how I wish mine did. He has to be with me every minute and it's driving me crazy! We went out for dinner last week on our anniversary (25th) and all of a sudden he's telling me what his wife used to do. He meant me, by the way.
Carolyn, and all, we just have to let it flow over us. Mine still knows everybody even though he is in severe stage. I really have it easy because he sleeps all the time and still knows everybody and is continent. What more could I ask for.
I guess DH is going into a new phase. Today is the third time this week that I'll have to wash the rug around the toilet and scrub the floor. In the middle of the night he gets up and pees on the rug instead of in the toilet. Then I get up and step on the wet rug. Yuck. Guess it could be worse - poop. Of course, he denies it. That's one thing that bothers me. His kids see him rarely and only in the afternoon when he's pretty good. I get the #@%#& early in the morning and late at night. Therefore they think he's fine. Sorry. Needed to vent .
carolyn, be grateful hes using the rug to pee on and it can be washed! you said it probably can get worse, oh yeah. believe me it can and might- count the days til the bomb hits the first time then we speak again..:) my DH too was a flirt all his life. he loves to wink at me still especially when hes naked int he shower chair..:o) when you are a caregiver blowing steam is a way of life-divvi
Divvi, I can always count on you to bring a smile to my face. I really don't know how you do all th things you do.I give you a big star. I hate to say it but I'm afraid if I were in your shoes, I'd be thinking about a nursing home. I just don't think I could clean up poop.
Carolyn the very good news is we all say that we cant -me?? everyone in my family is jawdropped i havent place DH with what i have been thru. you will see this too, the first time its not a pretty picture of course. but if i can do it anyone can. i came from a sheltered pampered life with 4 maids. never did housework 21-39yrs old! so never say never- some can+ some wont-thats the difference, but we can live thru the experience. its not all that cracked up to be once you are no longer a novice. its not likeable but its livable. divvi
Divvi....you truly are the Poop Queen! Not all that it's "cracked up to be"....lol. Preparing for that stage do you have any hints re odor control? Having loved one on coconut and cinnamon help? Or would you recommend another combination? Got to see humor in everything.
Thank you, thank you, thank you..........I couldn't have made it through the day without your support. Maybe I shouldn't take him to a social event anymore. You know the pressure from well meaning friends..........that he'll be "fine". If they only knew. It doesn't matter how many people are around...no one knows how this disease behaves unless you have experienced it. I thought I was making the right choice of the BBQ. It was that, or a graduation. Thinking that the BBQ would be so informal, it was my choice. I had mentioned before how I had noticed changes with seasons.......I guess I can add social situations along with that...Others say that it doesn't really matter.......YES, IT MATTERS! It WOULD have mattered to him and it still matters to me. He isn't a toddler. He is a 6'4" man who needs the care of a toddler. Why don't they get it? Well, I guess I wouldn't either, had I not had to experience it.
My son is planning to come home for a few days starting July 1st. I can't wait!
Thank you again! You are all lifesavers-----and I mean that literally!
From my experience going to social events was one way I was able to continue to deny my DH's disease. If he stayed home and I went, I could not enjoy myself as I felt guilty that he ws not with me. Than it dawned on me, he did not miss the loud noise and confusion and I should not feel guilty...better said than internalized. I then began to look at those experiences that he truly enjoyed....those outings with minimal confusion. To ask him to go out for a scoop of homemade ice cream makes his day. It was hard for me to look at things from his perspective. Have a wonderful time with your son.
scs, regarding odor control. i swear i ask my DH if hes eating his food with the 'feathers still on it' its so galldang dreadful at times. as far as coconut that only gives a new mask but doesnt elimate the issues at hand. :) now that really will turn you off to coconut for life! lots and lots of air fresheners of choice mine is linen scent. works well and bluedazes idea of white shaving creme after cleanup on your hands really does work! odor control outside the body is doable, inside the body is a whole nother issue out of our hands unless you do the colon cleansings. and that would be quite the ordeal if you can imagine. gotta learn to control your breathing like when you were in labor! :) divvi
The white shaving cream dislodges poop, even on my fluffy white dog's bottom when some sticks. I use it like hand washing soap..it seems. I have enjoyed using Nivia's 3 in 1 body wash, shampoo, shave cream. It smells spicy and it lathers nicely. I love the products named Clean Linen, Fresh Linen, White Linen..(room fresheners, but they don't kill odors. It's a combo of all the above that helps to a degree, but the house will not smell like NeimanMarcus's cosmetic counters, no matter what we do. Sugar does raise the stinky factor in poop, and I've been told that "sweet" is the last thing they can actually taste. Everything else is like eating paper.
Divvi,divvi...labor breathing...remember it well! Appreciate your comments re outside odor control....White Linen works for me. But we need the challenge of internal control. Now Nancy says so eloquently re "the stinky factor in poop" can be traced to sugar content. Lets see what we can develop for our AD caregivers that would be feather free, reduced sugar and have an agreeable odor. Off to do some research...maybe NASA has a clue. Imagine being in space unable to open a window?
I think it can also be traced to red meat, no? At the zoo the animals with truly stinky poop are carnivores. Little kids find elephant poop hysterical but it really isn't very stinky. The most anything smells is like a hamster cage, damp straw and sawdust.
Carolyn, I have not been in my bathroom bare-foot for over a year. I keep several pairs of cheap flip flops around the house, when I have to go the potty I slip a pair one. I have stepped in pee one time too many. Of course he denies also. says the toilet must be leaking??? when we have over nite guests(hardly ever) I always say"do not go into the bathroom with bare feet"