Status
Not open for further replies.

kfletcher

Active member
Joined
Apr 7, 2014
Messages
56
Reason
PALS
Diagnosis
12/2007
Country
Uni
State
Tennessee
City
Rutledge
As some of you might know I'very had a tough time for a little while now. Last March I woke up one day & well who would have thought getting into bed the previous night would have been my last steps. I could still stand & pivot but then was having some trouble with that sometimes and in June couldn't get myself up off the toilet & had to have my husband pick me up off the toilet & put me in my powerchair..at that time it felt like he pulled something on my rib, but was doing ok. Two days later I couldn't get up again and this time when he lifted me I let out a yell & said you hurt me that time. He broke 2 ribs.
just felt like things kept happening & so now I can't get myself to the toilet & I have to wear a brief, bladder got worse..now total incontinence. Don't want to go anywhere or do anything. I was spending hours upon hours sitting on the bedside commode because then I wasn't sitting in a wet brief.
just getting so very depressed & snapping at my husband. Telling him to put me in a nursing home & forget about me. Telling him when he try to console me, if you were in my shoes living my life, tell me you wouldn't want to end it. He's very patient with me, but I don't want to hear it's ok and we'll get through this.
I can't stop my feelings, I'm so mad, disgusted, sad, unhappy, depressed.
Getting to the end of my rope...can anyone who has been through this help me out?
 
I have no advice n the toilet issues but you need to treat the depression.

Do whatever your insurance requires to be seen by a mental health professional.

I did.
 
Maybe it is time for a catheter, that way you only have to be transferred to the commode for BM, and you are not sitting in wet briefs. Your skin will start to break down unless it is kept clean and dry. You may also have osteoporosis which causes your bones to be brittle. A sling and transferring devise might be easier on both of you. I have been using one with my husband for nearly 2 years now, and he is over 200 lbs. You have every right to be depressed, but it won't change a thing, so do talk to your doctor about it. Funny thing is that my husband is the most cheerful person you can meet, and I am the one that takes antidepressants, mind you I had been on one long before he was ever diagnosed. You will be in my prayers.
Paulette
 
Do look into the catheter issue as Paulette said. A fair number of female PALS get a suprapubic catheter and seem to love it. It is on my wishlist for when I can't transfer. And +2 for treating depression. We need all the help we can get and you are suffering. There is too much that can't be fixed but this is somet that can
 
Speaking as a guy, when you fall in love with the right woman it is for better or worse and that love means more then any inconvenience. My love for my wife means more the anything, I, sure you're husband is the same. I'm have the reverse situation and somethings wonder how my wife does it. I just figure I'm just a very lucky man. Hope this helps. Maybe you and your husband can talk to a professional together, if may help. Hope this isn't to cony.

Mike
 
Mike, no it isn't too corny...it's wonderfully reassuring to me!

Audrey
 
Audrey, second looking at catheters and if you can take more corn, focusing on the things that you and your husband can still do. What do you like to do together? How can some version of it still happen? Being less worried about incontinence will certainly help; what you are going through now is pretty much all-consuming, I'm sure.

Paulette is right on all counts -- with a lift, he won't have to worry as much about hurting you and if you need an antidepressant, get one. Maybe also outside the frustration of the moment, have a frank talk about what each of you is really worried about, what will make you worry less (paperwork, gadgets, other solutions, doing something fun every day) and how you see your life together going forward.
 
I didn't write the initial post, but I'm reassured by Mike's comforting "corny" words for my future.
 
Thanks everyone, I truly appreciate all your responses. Noone has ever mentioned the catheter to me, except for self catheterization and she said I was much to young to want to start doing that. It would be in all the time? What about infection? It would make life easier, not afraid to leave the house having to sit in a wet brief is my major reason I don't like to leave my house. Plus my complete humiliation of feeling worthless when my husband has to change my brief. Funny thing is I don't drink much at all & at night he changes me around 1:30-2:00, and I'm still soaked in the morning. I hate it.
Like I said we have a hoyer now but haven't been able to use it yet, tomorrow I have a hospital bed being delivered and a roommate cushion for my new powerchair. Hopefully things will start getting better, I can't handle things getting worse.
My husband had a Dr's appt last Friday and his stomachs been hurting well he has 4 hernias, and I'm sure all caused from me. So at least this will help him out tremendously.
As for talking to someone and going on something for depression, I know I should, but just not ready for that. It took alot for me to even post my feelings, so baby steps.
Thanks again and I will check into the catheter.
 
Yes, Infection is a risk with catheterization. It is less if you have a suprapubic catheter which is why some PALS have them. There is also risk with the wet diaper and in addition you have to worry about skin breakdown. There is no perfect solution. You must weigh risk vs benefit and consider quality of life for you and your husband.
 
Last edited:
don't be ashamed to talk about being depressed--you have a terrible illness and feeling bad and out of control is perfectly ok and understandable. you don't have to go to a special doctor, just your regular family doctor or if you attend a clinic even your neuro can prescribe an anti depressant. the first time I started talking one I was a mess and embarrassed also. I was so worked up, when my family doc asked what he could do for me I became hysterical! took him about 30 seconds to write that script! it was the best thing I ever did--now I am able to handle the things in my life with positive energy because I am not burdened by sadness


An no one in this site will ever judge you for what you post or say here. we understand...
 
Looking into the suprapubic catheter, I have an appt for May 4th or 5th, hopefully can have 1 by the end of May. I think it would be a tremendous help. Here'so hoping,
 
Good luck with the catheter. Anything that can improve the quality of our lives is worth a try. Bless you as you wait.
 
Good luck with the catheter. From what I have read it will be a tremendous relief to you. Sending you a big hug. Please feel free to vent and post your feelings on here anytime. We care and understand. Kim
 
Thanks and I'm really hoping it helps. At this point something's gotta give.
 
Status
Not open for further replies.
Back
Top