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Things that have helped me!
Internal Administrator
Posted: Thursday, January 5, 2012 4:05 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Crazy Blonde

Five years ago my hubby went through two heart surgeries in one day -- he had his aortic valve replaced (at 79 yrs. old) and while in CCU he started to bleed out -- one of the internal sutures came loose so they had to take him back in, crack him open again -- twice on h/L machine, twice the anesthetic -- a week before surgery he had just retired from being a high school teacher, a week after surgery, he was already suffering from dementia in mild ways -- about a year later was diagnosed with Alz. and has steadily gotten worse.

My main problem lately is with his incontinence. Hard to tell when someone begins to need pads in his underwear and then stops using the toilet altogether -- silly me tried to figure out ways to have him stop using the pads and use the toilet yet when I didn't put the pads on he would wet his pants. It has taken me abut 3 months to finally get it through my thick head that it is not something I can train him to do -- he is TRULY incontinent. Coming to grips with that fact has meant such a big difference. I now no longer hassle him, I just expect him to wet so he is always in Depends, etc. Acceptance of the entire situation has been my biggest problem. I was trying to rationalize something that could not be rationalized as if he were a two year old in need of potty training. Now he is also fecal incontinent and I am dealing with it the same way.

Hint, with the fecal part -- he always has a bit of passing gas before he is going to poop -- so I immediately get him to sit on the toilet. A great hint is to put a stool in front of the toilet and have him put his feet up on the stool -- this brings the knees up and helps the poop to pass. (sorry about using the word poop but it just makes things clearer). He also was having this love affair with toilet paper -- using two sheets to wipe himself, look at it, fold it up and then throw it in the toilet. This would go on like numerous times at each sitting. In the meantime, he gets his hands soiled and me crazy.

With the new sitting with his knees up, he can't reach back there, so he has to sit like that until he is sure he is done, then I allow him to take one wad, wipe himself, get him up, clean him with wipes and we both are a heck of a lot happier.

Also bedtime used to be the hardest part of my day -- he would fight me in everything I would tell him to do -- like a bad little kid. Actually screamed at me from time to time which only made me angrier and then he would feed off that anger and it was nearly impossible to go to bed and fall asleep for both of us.

Now, before I even suggest bedtime, I go in, get his fresh Depends and pads ready, put out his pjs, and then call him, help him undress and gets ready for bed, then send him to brush his teeth while I go about my own prep for bed. What a difference just a little pre-organizing can make.

He also had a horrible bout of athlete's foot a while back that I knew nothing about until I decided to help him cut his toenails after he tried and was cutting skin and bleeding!!!!! At that point, when I separated a couple of toes, I notice (get ready to gag) clumps of dried scabby yellow stuff and then of course the splits in the skin. He would always have socks on and EVEN SLEPT WITH SOCKS. Well, it took about two weeks to clear his toes up (with powder and constant washing and drying and more powder and keeping shoes and socks off as much as possible). It was then I had to stop his sleeping with socks on.

My gosh, who would have thought -- but obviously he was not letting any air get to his feet and that is what started it. To this day, however, because of that long time habit, he still fights me when I tell him to take his socks off before bed -- but I calmly remind him why we are doing it. CALM, NO SCREAMING, NO YELLING, NO ARGUING -- it's amazing how well that works.

So many things have to be changed in our lives but I find that prayer and peace in my heart carries over to my hubby.

Oh, even though he has forgotten so many other things, he is still vain enough to even have to comb his hair before going to bed!!! Men!!!
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Alan. A

Crazy Blonde -

Thanks for posting all this - there's some really good information and insight in your first post.

Would you be willing to re-post in the Caregivers Forum? I see from other posts that you've already found it. You've probably also noticed that it gets a lot more traffic than this one. I think the members over there would get a lot out of reading your post.

If it's easier for you, I'd be happy to copy and re-post there, but I wanted to give you the first shot.

Will look forward to seeing you over there.


Best,
Alan
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: sheryl726

Hey there Crazy Blonde, Glad to see your post! You have a great attitude.despite all the disease process. Everyday we just overcome and start on the next problem that will crop up don't we.
I am care giver for my mother, age 80, stage 6. Has been quite the process. and the "pooping" is one of the more challenging area's for us.
For light note on that issue. I was wiping my mother and had glove on and went from behind and she just leaned back so I am stuck with hand in pot and she is not, will not lean back forward so here we are with me trying to talk her into leaning forward.....took me several minutes but finally.....I am very careful about that now. lol The side of my wrist is still sore.
Thank you for sharing with us and come often as it helps I believe. Love to see you in chatroom in evenings. 6-11 PM usually someone there.
Take care and God Bless,
Sheryl
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Ttom

God love you for the torcher this disease is bringing to you! I have Early Onset Alzhiemer's (age 60) and feel asjhmed to think what I will be putting my lived ones through.
Please know that your actions are being written done in the Good Book by God.
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Crazy Blonde

quote:
Originally posted by Ttom:
God love you for the torcher this disease is bringing to you! I have Early Onset Alzhiemer's (age 60) and feel asjhmed to think what I will be putting my lived ones through.
Please know that your actions are being written done in the Good Book by God.
Oh, please don't feel ashamed -- this is not your fault and it is surprising how funny most of the stuff my hubby does is to me. And you are so young and have plenty of time yet I am sure. This whole mess doesn't get bad all at once. And I thank God that my hubby remembers very little of the things that happen -- that is the blessing. And because he doesn't remember them, you don't have to worry about putting anyone through anything. That is what loved ones are there for. I truly joke about him being my new two year old and at times my big, white haired not housebroken doggie. Funny but if you think about it, we put up with a lot of the same stuff with our pets. And God is so gracious and will watch over you and your loved ones. Honest, He really will!!!
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Crazy Blonde

Are you alone when he's gone? If so, has that created any problems for you -- serious things? I hope not - as for not even knowing what day it is, honestly it is not just with dementia, I get the same way sometimes because I am just too darn busy to even care. There are far more important things. Does he know how stressful his absence is for you? If not, you need to let him know. You have enough problems without this too. Heck, look on the bright side -- if you went with him wherever it is that he goes, you might find a wonderful place to shop! That's how I relax -- or just be able to actually relax knowing he is right around the corner somewhere. I am glad you are making it -- I think we all worry about dementia as we get older. But the main thing is that you be sure you are going to be okay alone -- you are a valuable person and deserve the best of care. God bless you. Barb
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: SnowyLynne

Having Vascular Dementia I just take every day as it comes silly or not.Some days I don't know my butt from a hole in the ground but why worry? That's life! My hubby has been gone since the 8th of this month due back Mon.or Tues some days I don't even know what day it is,or i just forget everything,but i'm still with it enough to know its the stress of him being gone.......This may be the last trip without me as next time it may be worse who knows......I'm still living life as well as I can while I can...........I'm a makin' it!!!
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Jim Broede

You've mastered the art/craft of care-giving, Crazy Blonde. Acceptance. And good vibes. You're the best. You not only know how to use common sense. You know how to love. That's almost always a winning combination. And you think of yourself as crazy and blonde.- Wow! You have a lot going for you. -Crazy Jim

P.S. As for me. I've turned from blonde to grey. But I'm still as crazy as ever.
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Crazy Blonde

Just wanted you all to know that I downloaded the book by Coach Frank Broyles (you can just put him in your search engine and go to his site and there is a link to download it, free) and actually, silly me, printed out all 100+ pages -- I will now probably have to replace my ink cartridge. But, it is a simple to read book -- some info you probably already know, some may be new, but it is something nice to read maybe in a quiet moment before going to bed each night.

Thank you for those that said my post has been great -- trust me, I am not an angel, just a wife who is devastated over what happened and is happening to her husband (and me)! It is sad but at the same time it is giving me such a wonderful chance to finally help him after he was my helper for so many years. Not sure what tomorrow will bring but I pray each night for another good day and then wake up expecting it. I have also started going to three different support groups with church family looking after my hubby while I am gone to two of them. One actually has something going on for the patients while the caregiver is in the meeting so that is so great. It is so comforting to know there are others with EXACTLY the same problem.

One thing I would like to know is why the heck Medicare does not cover the expense of all the pads and Depends and more pads and guards and sheet protectors, etc., etc., etc., that we go through just in one day!!!! I just read somewhere that there is a tax break for those things but at our income level I am guessing that even the exorbitant amount I spend on those things, we still would not qualify for anything extra in the medical field. And, of course, ditsy me has not been saving the receipts assuming it would not matter -- so that is something I will be doing from this point on. Get a large shoe box just for those receipts.

God bless you all -- you guys are all terrific and I love your response Crazy Jim!!! Actually I am more white since all this started, but it's a nice white!!! But still a lot crazy! God bless all of you -- hang in there friends -- together we will all make it. And pray without ceasing -- God loves each and every one of you and loves hearing from you.
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: just exhibit love

Hi Crazy Blonde

your post is beautiful..thank you for sharing it..


you my friend..have much wisdom


I feel your post is best right here..


Crazy Blonde..you ..are an angel among us..


Namaste..Love Rosie
Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Crazy Blonde

Sure, go ahead and you do it -- I really don't want to mess anything up. It's funny how peaceful I feel now that I have finally been able to develop a more accepting attitude about all of what we are going through. Thanks for the compliments.
quote:
Originally posted by Alan. A:
Crazy Blonde -

Thanks for posting all this - there's some really good information and insight in your first post.

Would you be willing to re-post in the Caregivers Forum? I see from other posts that you've already found it. You've probably also noticed that it gets a lot more traffic than this one. I think the members over there would get a lot out of reading your post.

If it's easier for you, I'd be happy to copy and re-post there, but I wanted to give you the first shot.

Will look forward to seeing you over there.


Best,
Alan

Anonymous
Posted: Thursday, January 5, 2012 4:05 PM
Originally posted by: Crazy Blonde

That is so funny -- kind of reminds me a totally stupid evening here. Every Saturday, we play Men's Spa!!! That means hubby takes his shower, dries off and then I wrap a towel around his chest, comb his hair and then lather him up with a brush and shaving cream after prepping his beard with lavender oil. Then I take a safety razor, shave him, put on his hot face towel, then slather on the moisturizer -- all in lavender to help soothe him. He loves it. The funny part was the time I went to comb his hair (which is all white) and on the top it was brown. I asked him what he had washed his hair with and he said shampoo. Okay, but it was still brown. I then looked and his towel had some signs of poop - probably from a slightly dirty butt -- okay, now this is getting gross!!! But anyway, sure enough, that is what it was and we had to rewash his hair in the basin and then after I left the room I laughed till I almost hurt myself.

Honestly, some of the things that happen like you being trapped in the toilet are too darn funny. I keep a daily journal of my own and everything is in there and on bad days I can look back and see how far I've come in dealing with this. And laugh again at the silly things. Oh, and I love when he grabs my underpants by mistake cause I lay my clothes out before getting dressed -- I'll be wondering where the heck I put mine and there he is struggling cause his just somehow don't fit right!

God bless you, Barb
quote:
Originally posted by sheryl726:
Hey there Crazy Blonde, Glad to see your post! You have a great attitude.despite all the disease process. Everyday we just overcome and start on the next problem that will crop up don't we.
I am care giver for my mother, age 80, stage 6. Has been quite the process. and the "pooping" is one of the more challenging area's for us.
For light note on that issue. I was wiping my mother and had glove on and went from behind and she just leaned back so I am stuck with hand in pot and she is not, will not lean back forward so here we are with me trying to talk her into leaning forward.....took me several minutes but finally.....I am very careful about that now. lol The side of my wrist is still sore.
Thank you for sharing with us and come often as it helps I believe. Love to see you in chatroom in evenings. 6-11 PM usually someone there.
Take care and God Bless,
Sheryl

 
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