Can't get off the toilet independently-what now?

[blitzc]

I have had a raised toilet seat for about two years and have raised the legs along the way. In the last three weeks a sudden change has occurred. Now I need help getting off most of the time, being able to push myself up only once or twice a day. My husband works. With stay at home orders, my college-aged son has been home to rescue me when I am stuck. We asked my aid to return this week. She is here (at our expense) in the mornings for showers, ROM, and lunch for about 2-3 hours and takes care of the toileting help. But soon my son will be back at his co-op, and the afternoons will find me alone. So now what? What have others done at this stage?
Hire more help out of our pocket?
Elecit friends to help come for shifts of time?
At my last clinic visit, I was not experiencing this problem so we didn't discuss it with my neuro.

 

[affected]

I'm so sorry. My Chris was pretty much never left alone. Sure he was given alone time, and space, but not simply at home for hours on end alone. I would go outside gardening and mowing and regularly check on him. Occasionally (a handful of times) I would race to the shops leaving him alone for an hour at most. I rearranged how I worked, to be home as much as possible and had workers here the rest of the time. I also reduced my work income as he progressed and spent more and more time as his primary carer.

I guess it comes down to one or the other - either the CALS earns less and looks after, or you have lots of support from people who can be there, or your CALS keeps earning and you pay for help.

I would encourage you and your husband to start getting you extra help time one way or another really soon as you don't want a fall at home on your own

 

[blitzc]

Thanks, Tillie.

 

[KarenNWendyn]

Sorry to hear this Cathy. It’s Hoyer time. You really, really don’t want to fall.

I went through a phase where I could stand using a walker for peeing with a female urinal held underneath me by an assistant. And when I could no longer get off the toilet for a BM, I used the Hoyer. I can no longer walk or transfer on my own, so we use the Hoyer for all transfers. You’ll find creative ways to pee.

Oh, and because of my active bladder, I really can’t be left alone for more than an hour unless I’m wearing incontinence briefs and a pad. We had to hire helpers.

 

[wmilo]

Cathy, so sorry you have to go through another transition. I heard about a toilet accommodation that is like a platform that goes between the toilet and the floor with two wax rings - one between the toilet base and the platform and one between the platform and the floor. I have never seen one but with your raised seat, such a thing might allow you some extra time to figure out alternatives. I think it was maybe mentioned by the OT person at clinic.

Regards,
Bill

 

[blitzc]

Karen, are you paying yourself for the help? So you have hired help anytime your spouse is not home? Does she still work?

 

[bigmark1954]

Just wondering if you can pull yourself up with the installation of a strategic grab bar installed in front of the toilet. If your legs won't hold you up disregard this. Best Wishes!

 

[KarenNWendyn]

I think what Bill is talking about is a toilevator. It would buy you some time.

Yes, we pay out of pocket for the caregivers. We have two gals that trade off working a daily 4 hour shift M-Saturday and the occasional extra hour. My spouse takes care of me the rest of the time and is otherwise not working. In a 4 hour shift, the caregiver starts by giving me breakfast (I have a feeding tube), does range of motion exercises, walks the dog with me, helps me with toileting, and gives me lunch before leaving.

 

[Jimi]

I was able to minimize the help required by training myself for bm's at the same time every day. This will minimize the required help. Hoyer and tilting shower/commode chair now are used as I am paralyzed from the neck down. For pee I use a urinal and my recliner is a lift chair which gives me a good angle for the urinal. I used to be alone for 5 hours when I could still use the urinal on my own. That stage lasted for about 2 1/2 years. Now I can be alone as long as I don't have to pee and I have the backup breathing system in place. I keep my alone time to a minimum these days, an hour or two. IF you can figure out a funnel and hose arrangement for pee and regulate bm's, along with some home automation, you should be able to minimize your skilled help and be relatively safe.

 

[nona]

Life would be grand if we didn't have to pee. It's been a year since I started needing help to get off the toilet, even with the toilevator, which is useful for the caregiver too. I build my schedule around peeing. I have a paid caregiver here every day from 8-2. I pee around before she leaves and then I'm alone with a Depends on until 5/530 when the night person comes. On the weekends I eat less midday because I'm alone from 11:30-5:30. I hate to pee in the brief but I don't want to lose my few hours alone every day.

 

[Jimi]

I hear you Jessie. I'm thankful that I have managed to not have to wear depends. But it is always a balancing act between getting plenty of water and timing for when you can go. I value my alone time too! Some how I have managed to get myself regimented enough to consistently go from 1130pm to 8am with no pee. I consistently drink 2 cups of black coffee and 1.5 liters of water only per day .

 

[KimT]

Cathy,

How are your arms and hands working? Is it possible to try a urinal. I've pondered this topic a lot because I pee a lot and drink tons of water and smoothies. I don't think I would mind sitting on a pad and trying a urinal or even using a pad or depends to pee.
The MOST important thing is your safety. Keep that in mind no matter what you do.

CNAs and people who provide care are cheap where I live. There are always people, some in my condo, who want some extra cash. My plan is to make use of them. Fred is here 90% of the time but I never intended to use him as my caregiver. He believes he would have no problem with toileting or even bathing. Mine will boil down to how much money I have left.

 

[nona]

Jimi, I have also trained myself to go all night, from 10 pm-8 am. I don't take in fluids after about 9 pm.

 

[blitzc]

Jimi and Jessie, I have also trained my bladder from 10 pm-7:30 am with no liquids after 8ish except for just a small sip before bed for the dryness. I try to limit my liquid during the day now so that I can make it 3 hours. But I really like your suggestions of "training" around caregiver schedules. I too enjoy my time alone so I can nap or just not have to communicate. Talking wears me out these days.

Kim, my hands are not very good. I struggle pulling my pants and underwear up especially when trying to balance. I keep getting the impression here that the female urinals are difficult. If someone could just come in to take me to the toilet that would be sufficient. I don't need someone around the clock once my morning routines and meals are done.

 

[Jimi]

Sorry for your difficulty Cathy. I hope I didn't offend anyone when talking about training. I was just describing my way of dealing and hope I didn't come off as condescending. I can't help but wonder if you had the right shape of urinal/hose and if you were elevated in a lift chair an had pants with a large velcro fly (I modified the fly of my flannel pants) if it would be possible to pee? It would be much less stressful than depends or transferring. When I was using my power chair I would slide to the edge of the seat to facilitate things. It's much easier in the lift chair. Obviously as I don't personally own the same equipment as you, I might be thinking of it all wrong...