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Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
Hi everyone, hope you are doing well! We have had a rough day today. We started off first thing this morning with a #1 and #2 accident before we could get dad out of bed. We got him on the potty to finish and got the soiled clothes sheets and covers off and had to go ahead and do his bath first thing. We finally got him settled and within a couple of hours his pants were soaked again. He said he was reaching for the urinal and just went. We decided it best to put a pull-up on but he still wanted the freedom to use the urinal so we cut the sides and taped it. Then he laid down for his nap and before he could get up he had another accident and since the pull up had been altered his pants and the pad under him was soaked again. We down have what more resembles a diaper on him that is meant to be fastened and unfastened. This is a new problem we are facing and I was curious if others are having or have had these issues. The other problem we are having is a way for him to notify us in the middle of the night if there is a issue. We have a monitor over his bed but his voice is too weak. I also got a wireless doorbell and mounted the button to the bed rail but he said he can no longer get his hand/arm over there to push the button. Any ideas folks?
 
Bryan, I have no words of advise, I'm sorry you've had should a rough day. Hang in there.

Max
 
Thanks ya'll for the words off support. We will get through this, it is just the latest obstical thrown at us by this horrible disease. Because he is so weak he is in the bed for the most part now, but I did put the sling for the hoyer lift under him before he laid back down today after testing it on my sister first. Hopefully the Hoyer lift will be a huge help because after this past weekend my back can't take much more.
 
The hoyer lift is great. I used to lift my clients and put a pot right under them to use. Also, you can look up bladder training, it's basically lifting him every two hours and gradually less but always at the same time. The bladder basically knows after a while when to release. Adult diapers may be the best for now since he is in bed often. Urine is so acidic and can start bedsores even after a short time. Good luck
 
I was so worried to open this thinking you meant falls!

Can he use his foot to tap the doorbell button? It is so hard when they reach this stage, it was awful when Chris was down to just a bit of movement but no strength in just one finger.

I set my alarm and would get up and check on him ... of course usually he was asleep as I wasn't responding to his needs, he could be awake 10 minutes later...

There are some disabled switches you can hook up that take very little pressure and you would have to put it within reach and maybe risk him accidentally setting it off at first?
 
how exhausting for you and him! so sorry for the very rough day
 
Thanks ya'll! Today has been better. We have had to great transfers from the bed to the potty chair using the hoyer lift and it doesn't seem to bother him at all. We also got him on the potty chair this morning for his bath. We have been using the urinal regularly but are keeping the absorbent briefs on him to contain any accidents he may have. I am going to try to set him in the chair for a little bit in the morning to get a break from the bed. I can definintely see a little bit of decline everyday now as he gets weaker and weaker. We are keeping our heads up and making the best we can of each day but he sleeps or dozes in and out for the most part all day. Thanks Tillie I will look into a different kind of switch. In the mean time we are checking on him as we wake up during the night. This has definitely become a full time job if it wasn't already. The VA is going to be sending someone over 2 hrs a day Mon - Fri and 4 hrs a day on the weekends to assist and we have someone that is coming from 5-10 Mon-Fri to help as well. We will get through this the best we can! Prayers for all affected by this horrible horrible disease!
 
Oh Snowman, I glad today has been a bit better. We can hear and read about how time consuming and difficult caretaking for PALS is as things advance, but I don't think anything really prepares us. Glad to hear that you are getting help!
 
Make sure he keeps drinking liquids and doesn't refuse out of a fear of wetting himself. Also, have you thought about a urinary infection? that could be the cause of not being able to hold it long enough to get to the urinal. would be worth having checked out...
 
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