How many of you CALS have help

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nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
We have no family to help us, and my CALS says she doesnt think she can handle things alone when I get worse-ie need turning over at night etc. she is talking about needing to sleep separately because of the noise I make at night.
Does anyone have a similar situation?
 
Perhaps a nurse could train your CALS how to do these things. They're standard procedure in hospitals and in hospice.

I slept separately because I was the one making the noise. :) I had an infra-red baby monitor so I could see and hear my PALS from anywhere in the house.

A hospital bed with automatic turning air mattress made life a lot easier.
 
We still sleep together. Steve has great difficulty turning over, sitting up, etc. He also vocalizes in his sleep even though he isn't in pain. I just do what I have to do.....I work full time and just do it. We have family around but they are in their 80s and of no help.
 
I take care of my PALS at night without assistance. We've done a number of things that make nights WONDERFUL. When Darcey was no longer able to move her legs and turn over by herself, we moved her to the hospital bed. I use a Hoyer Lift to move her into and out of the bed. The foot of her hospital bed pushes up to the right side of our queen bed. That way she can look down her bed (the natural direction of the point of her head) and see me. At first, we used a turn pad. She was needing to move from back to side to back to other side about once every hour to hour and a half. The turn pad made that much, much easier. The next thing we did was to add a low alternating pressure air mattress into the mix. Doing this removed the need for her to have to turn at night. She then would sleep on her back, without the need to turn, for 8 - 10 hours. Recently, we've added something in the middle of the night when I get up to use the bathroom. On my way back to bed, I use the bed's remote and raise the head of the bed. I then lean her forward which pulls on the muscles in her back and keeps her back from hurting come morning time. A small 2 minute proactive measure that makes waking up a nicer thing. After bending her a time or two, I lay the head back down and she's back to sleep in moments... as am I. Sleep is a most wondrous thing.

The only time I turn her now, is to get her dressed... and I'm more likely to simply lift her butt to slide on her pants than to actually turn her. If you can be specific as to what thing(s) is(are) difficult, I think you'll find some good suggestions from folks here. It is a scary proposition as one looks ahead and has to face the fact that it only gets more challenging. Perhaps developing a process now, before you need it, will make her more comfortable and able to succeed when you do need it...

Jim
 
We dont have for me yet either. And in fact it scares me more and more every day. My caretaker is my 82 year old mother who has some degree of demintia. I often say we're like the blind leading the blind! I worry about her since I see her aging and forgetting things which unfortuately causes us to not get things done in a timely manner. I have very little voice left so I have to rely on her to make my calls.
Just this week we interviewed a certified caregiver this week and we are going to try her on Thursday of this week. So, even though I will be paying out of pocket, I need to get Mom help. What concerns me the most is once I need more skilled nursing type help - what do we do. I dont know yet what is needed in the future. Are we all going to need 24/7 nursing care?

Sorry for the long answer here, its something that has been on my mind a lot as well! Good luck with finding your answer.
 
We increased the amount of help as my hubby's ALS progressed. First we got a hospital bed, a bidet attachment and the shower remodeled. Then started with an aide coming in for 3 hours, 3 mornings a week, about 18 months after diagnosis. These days we have someone in the mornings from 7 am - 1pm 7 days/week, then from 3 - 5 pm 6 days/week and someone comes in 4 nights a week. We started the night time help about an year ago because it was getting really difficult for me to function normally. I work full time.
 
Neil - firstly I agree training for your wife will help her to feel confident.

Also, starting to help you in little ways and building up helps too. I found that it was kind of natural because I helped more in increments as progression happened. It wasn't like having a totally able husband become completely incapacitated overnight and I had to learn what to do.

Then I had help start slowly. Just 2 days a week for a couple of hours at first, and only doing housework help and very basic things like make his breakfast and coffee etc at first as he could feed himself. As things went along, the hours of help and degree of help increased.

I had the carers help in ways that were comfortable both for myself and for Chris as he really wanted me to do everything for him, so it was a gradual process as we all adjusted.

I will admit it was a bit easier for me as I felt confident I could learn to do anything that was needed, and your wife doesn't feel confident. That's where some training, and easing into doing smaller things and increasing them may help her to find she can actually do more than she thought and have help for the things she really can't do or isn't comfortable doing.

I hope that makes sense
 
We dont have for me yet either. And in fact it scares me more and more every day. My caretaker is my 82 year old mother who has some degree of demintia. I often say we're like the blind leading the blind! I worry about her since I see her aging and forgetting things which unfortuately causes us to not get things done in a timely manner. I have very little voice left so I have to rely on her to make my calls.
Just this week we interviewed a certified caregiver this week and we are going to try her on Thursday of this week. So, even though I will be paying out of pocket, I need to get Mom help. What concerns me the most is once I need more skilled nursing type help - what do we do. I dont know yet what is needed in the future. Are we all going to need 24/7 nursing care?

Sorry for the long answer here, its something that has been on my mind a lot as well! Good luck with finding your answer.

HOPE4ME: Have you been able to look at the sticky posts on top of this forum? Some good advice on what to expect and how to prepare.

I think you should call the nearest MDA and ALS Association and explain your situation. It seems to me you need a dedicated social worker who can assist your CALS.

--Mike
 
We increased the amount of help as my hubby's ALS progressed. First we got a hospital bed, a bidet attachment and the shower remodeled. Then started with an aide coming in for 3 hours, 3 mornings a week, about 18 months after diagnosis. These days we have someone in the mornings from 7 am - 1pm 7 days/week, then from 3 - 5 pm 6 days/week and someone comes in 4 nights a week. We started the night time help about an year ago because it was getting really difficult for me to function normally. I work full time.

We managed to pay for all this because (1) my PALS had LTC, and (2) he managed to work, at least part time, until last October.
 
it's just jane here with me most of the time. for turning over at night i just don't do it. for way the state handle things here. i don't see much help coming till the end.
 
We have been blessed in so many ways, because a)I am a nurse and was able to afford to take a 2 year LOA to take care of my husband. b)My husband is a veteran so they have purchased all the equipment we need for him, including a bed that turns him as programmed. c) We qualify for at least 3 programs for in home help, but him having a ventilator has complicated that significantly. Also I am very picky about his care so prefer to do it myself. d) Belong to an amazing church that has gone out of their way to make sure that we are emotionally and physically cared for. Many of the nurses that I have worked with go to the same church and have volunteered time to come and give me a full 24 hours off from his care, and sleeping in the same room. Also meals and housework has been volunteered every week for the last 8 months from people in our church.
I don't know what I would have done with out all of this, as I would not be able to work full time and care for him when I was at home, especially once he was total care.
 
We solved the problem of turning in bed by getting the doctor to prescribe a lateral rotation mattress. Works like a charm. If you are lucky you might also find one on craigslist.

The need for help is unavoidable and increases as the disease progresses. MY PALS now requires 24/7 care in the same room. Besides myself, we have a current staff of private caregivers of two licensed vocational nurses (40 hrs per week each), one CNA (40 hrs per week) and a nursing student (16 hrs per week). Because nursing homes do not provide the necessary 24/7 in-room monitoring, home care is the only option, which bankrupts most patients' families. At some point the job changes from mostly custodial to mostly medical, but insurers try to continue classifying it all as custodial so they don't have to provide nurses. Shame on them. We are actively trying to fix this problem in California, so California residents should read my post entitled "Attention California Residents." This directly addresses the problem of getting nursing care in the final stages when the primary caregiver needs to sleep. Please, for the same of us all, please take the time to read and respond to that post.
 
Maybe I am clueless, but I don't understand what need there is for nurses. A mid-morning couple-of-hours listen-to-music-ROM exercise/massage CNA-type student was all we (our son and I) ever had, and that was for extra hands and socialization for Larry, not anything medical. What are these "skilled" people doing?

I only ask because some of you seem understandably concerned about finding and paying such help, and I don't think most of you need to be.

As for turning, Neil, Larry couldn't be, (250#, subluxated shoulders, dicey spine/eyes/everything) so we didn't have a power mattress. He was on his back/butt for >3y. We had a powered bed with a standard hospital mattress and on top of that a low-voltage heating pad that was almost always on, and on top of that, a 2" foam overlay (not the cheap yellow egg crate stuff).

I have previously published our travel pillow/pieces o' foam for the arms regimen, and of course he wore pressure relief boots. Most importantly, his bed was never anywhere close to flat. His legs and upper torso were always [differently] elevated. I understand that it is only your wife at night, but likewise, I was the only other person in the room so on that score, so like the others, I will say that it can be done.

Do you know when/why you are making noise? Is your BiPAP mask uncomfortable...does your back hurt...? In other words, what does she do at night to fix whatever problems you have? There is probably a way to head some of them off at the pass.
 
Nursing starts to become necessary with tracheostomies. Suctioning a tracheostomy is a skilled task with substantial risks and is considered the job of a licensed health professional, as is giving medicine through a feeding tube. Operating a nebulizer, percussive vest, and ventilator are all medical tasks. A family member is exempt from licensing, but if you need to hire help, for the patient's protection a certified health worker such as a CNA or HHA should be the minimum level for the job, and it should be under the responsibility of a licensed RN. Importantly, since these are medical tasks, health plans should be covering them.
 
My pals and I still sleep together, but because he stays up late watching tv, and he vocalizes some during the night, I wear earplugs so I can sleep. I am not pleasant when I don't get enough sleep, so while he was worried initially that I wouldn't hear him if he needed me, it has worked fine so far.
I do understand your CALS concern though, it seems maybe fear of the unknown might be overwhelming her right now. Might be time to air some of those fears, and have a good heart to heart. Then follow Mikes advice, and check out the posts on planning ahead, great info that might help ease some of her fears. Also, if she's not on the forum, you might want to suggest that she join, she can ask all the questions she wants, and everyone is so amazing and ready to lend a hand.
Grace
 
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