Caregiver for a carer

[Aussiemndcarer]

Just wondering about what CALS get their care helpers to do. I am so new to this,but we have just received funding for a carer to help out so I can find time to leave the house. I have been so attached to primary caring for my husband that I know it is going to be a task to actually leave and go too far. My husband has respiratory onset and is so reliant on breathing machines,batteries,etc that I rarely go out of his site. I think I will only duck outside to weed my overgrown garden or to plant some of my seedlings that are nearly dead. I will also disappear into my bedroom and sleep for a while. I just wonder how others get along when help arrives into their home. I am so unused to people being in my house. I know It is in the best interest for my PALS that I get a break but was just wondering how others get on??by the way I will continue with showering and toileting etc. we have two lots of 3 hours per week.a

 

[Gembead]

Hi Aussie, I havnt gone down this road yet, as we have been allocated only 20 hours over six months . We do how ever use respite care at Treendale so I can have a decent break and BJ is looked after. I think I would probably stay close and once we were all comfortable with trusting each other then go visit a friend or go to the shops, baby steps.
Hugs Gem

 

[Atsugi]

I trained each one to communicate, to administer air, and to recognize trouble. Then I could get some sleep or go to work.

If you are going to be doing all the toileting, how are you going to be gone for very long?

 

[affected]

I would have thought someone would write a care plan with you?

First up, sit down and really honestly say to yourself - what are the things you find you enjoy the least and take your time from what you want to do most?

That's where I would start.

It may be some housework, washing, food prep besides actual personal care for your PALS.

I started with light housework help and as things progressed and my hours of help increased, the complexity of what they did increased slowly. At first it was really hard to have someone doing stuff in my house, but I started to find that it was amazing to have someone doing this stuff, while I did gardening, ran chores or worked at home, and then I could actually have more time 'with Chris'. I got smart at getting them doing stuff that would empower me better.

So try to think of it that way. What will empower you the most?

 

[GilWest]

I hope I do not sound callous, but I am in a dead run for the door when help arrives. About five minutes of report, and I am out.

 

[Atsugi]

I hope I do not sound callous, but I am in a dead run for the door when help arrives. About five minutes of report, and I am out.

That's the way we should all be. Gotta switch it off sometime and recuperate.

 

[gooseberry]

I can only second others thoughts. Take your least desirable or hardest on your body and have those done...bathrooms and floors in particular. Take your time to truly get away so yourmind can clear a bit..nature walk, a hot bath with soothing music, sleep, outside listening to birds...whatever works.

You need this way more than you realize

 

[Narrowminded]

My situation is slighty different. I am lucky enough to have a nure 5 days for 10 hours. We usually report and catch up for about 30 min. Yes, having some other adult convo is just as important to me. Then it's off to work I go on 4 out of the 5 days. While I'm gone, the nurse does everything I would do for Brian, and since he is on a vent, I'm only permitted to have a nurse, I can't have anyone with less schooling (as per the agency rules, due their insurance as well). My health insurance covers this. This time is also when I get my groceries and run other errands and if I get lucky, take a walk or some other relaxing form of exercise. The final day is when I do go into work it catch up time on whatever. Maybe getting the car inspected like this past Friday or getting to lunch with a friend, or even just chillin' at home and working on a craft project.

You really do need to ask yourself - what do "I" need? and be selfish about this time, it really does help to keep you sane.

Hugs,

Sue

 

[GilWest]

My situation is slighty different. I am lucky enough to have a nure 5 days for 10 hours. We usually report and catch up for about 30 min. Yes, having some other adult convo is just as important to me. Then it's off to work I go on 4 out of the 5 days. While I'm gone, the nurse does everything I would do for Brian, and since he is on a vent, I'm only permitted to have a nurse, I can't have anyone with less schooling (as per the agency rules, due their insurance as well). My health insurance covers this. This time is also when I get my groceries and run other errands and if I get lucky, take a walk or some other relaxing form of exercise. The final day is when I do go into work it catch up time on whatever. Maybe getting the car inspected like this past Friday or getting to lunch with a friend, or even just chillin' at home and working on a craft project.

You really do need to ask yourself - what do "I" need? and be selfish about this time, it really does help to keep you sane.

Hugs,

Sue

I am amazed that insurance would pay for that. Most would say that it is custodial care and would not cover it.

 

[pittsburghgal]

I am also amazed that your insurance pays for this. I would be overjoyed to have this! I'm glad you get a break, Sue.

Sharon

 

[Jhill]

Gil,
You made me laugh out loud and I needed that right now.
Joan

 

[GilWest]

Gil,
You made me laugh out loud and I needed that right now.
Joan

About the dead run? After 3 or so years of MND and 2 years of providing full time care, attitudes and priorities change...lol. I remember one of my first posts on here was about maintaining dignity while changing hospital gowns! There is no dignity with this disease. I have become WAY more personal with my mother than any son should. I would venture to guess that 99.99999999999999999999 percent of sons have not had to help dis-impact their mother's bowels.:roll:

 

[patoyeah]

u r The Man, Gil. All u cals are a gift.

Thanks,

pat

 

[Jhill]

I hope I do not sound callous, but I am in a dead run for the door when help arrives. About five minutes of report, and I am out.

Gil,
You don't sound callous. You sound like a caring son, who has taken on an enormous responsibility and needing whatever breaks you can get. This horrible disease takes a toll on everyone.
Joan

 

[Aussiemndcarer]

Thanks for the discussion . Well I did it! I took on your advice and disappeared quickly today( day 2 ).
It is amazing this outside world of ours,especially when you haven't been out for ages. I felt quite removed from reality.
The winter storms had actually blown away for the day to let the sun shine too. With my 3 hours,I actually made it to our local bank to sign some legal papers,picked up a prescription,and managed to buy my Pals an wedding anniversary card! Sipped on a triple strength coffee and drove like hell to get home. I'll get better at this......All was calm.....