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LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
421
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
So how do you do it when it is you and your PALS and no one else during the day. I am having a difficult time . I have started to use a hoyer lift to get Mom to the commode but I have to pull her pants down then wipe then pants back up. I am so sore and so tired. I have been crying all day. The sling we are using on the lift is too big for her. It is a toileting sling but if we put her arms inside she slides out. This am she slid out and was hanging upside down by her legs...honestly, I though that was it. I then lifted her up, leaned her against me, brought the lift down and got her to the floor. I could not lift her up to her chair. I called my mother in law then my husband then 911. I ran her toe over with her chair and then couldn't roll the chair off so I lifted it up. It is a power chair, they are heavy...don't know how I did it but I did. What a circus. I still feel bad that I could not get her up off the floor! I am thinking that a bed pan might be necessary. Mom has gone downhill so quickly. She now has no movement in her right arm and that is the side the power control is on for her chair. She can't write anymore. She can barely touch the screen on her Nook to turn the page. Why isn't there more help available? Why is this disease so cruel? Why Mom? She has such deep faith and the best attitude ever. She is amazing...still laughing through all that happened today. She is truly an example of what we should all strive to be. She is what keeps me going.
 
Laura, I'm so sorry about all you went through! What an ordeal!

What about hospice? It wouldn't hurt to ask! She was going to ALS Clinic, right? Call them/email them (email for your records) about the situation and ask for hospice prescription. Sounds like you need it. That's the only way I know of that you will get help!
 
I agree with Brooksea, you are a sweetheart, you need some help. Bless your heart, you are in need of some help, so wish we all lived near one another, my sister would help you out in a second. She is so kind, wish we could get to each other as quick as the computer..
 
Oh Laura, I know just how you feel. In the beginning, when my husband first lost all movement, I was terrified being alone with him. Toileting was a NIGHTMARE. There were many days I was reduced to tears. I find it amazing that we never had an accident that sent him to the hospital. I feel like we came so close, so many times. Practice will make you better at it, but get some help. I wish my husband would let me get hospice. I am so unbelievably tired and sore all of the time. I feel certain that I will never have normal use of my hands or left knee again. I am so careful not to compromise my back. I don't want to live with a back injury for the rest of my life!

It sounds like your mother is a treasure. I hope you get the help you both deserve.
 
I agree with CJ, I'd try to get hospice in there ASAP. That being said, the only thing I would caution, would be to make sure you have all surgeries and equipment for her before hospice comes in, because once she is in hospice, medicare/medicaid will not pay for surgeries or equipment because they just pay a lump sum to the hospice agency and usually it is not enough to cover all of thier expenses.

As far as equipment, my husband has: hospital bed, motorized chair, rollater (which he no longer uses), bedside commode (which he no longer uses), bi-pap machine, suction device, cough assist maching, and a dynavox communication device with eye gaze attatchment.

We also had to get his PEG feeding tube surgically placed before hospice. Also any modifications to her chair are also considered "equipment related" and so I'd do them before hospice. Currently we are doing an additional control on my husband's chair in order for me to drive it (as he is having a hard time driving it), and we are replacing his current head rest, with a head rest that also has a "U" shape to support his neck and a strap across his forhead to steady his head, as his neck and all is becoming "floppy". Once that is done, he will be in hospice.

As far as bodily functions:

My husband is mainly bed ridden at this point, unless I use the hoyer lift to get him in his motorized chair.

For urine, I just use the urinal with him. I am not sure how it would go with a woman. So I don't know how much help that is to you. When my husband has to poop, he just poops in his bed (trying to lift him too many times and putting a bed pan under him is too painful for him, so I try to limit the amount of times I lift and roll him.) So once he has pooped, then I roll him onto his one side and clean him up, then put balm on his bed sores, then I roll up the soiled bedding into the middle of the bed, and put on the clean linens then roll the remainder of the clean linens and place that roll under the soiled roll. Then I roll my husband back on his back (with a big rolled lump in the middle of his back momentarily). Then I go onto the otherside and roll my husband the opposite way, pull the soiled linens off of the bed and place on the floor (I then put them in a hamper once I am done taking care of my husband), then pull the clean linens and make the rest of the bed. Then I roll my husband back on his back and pull him up towards the head of the mattress, then I lift the foot of the matress then the head of the mattress.

You can also google or youtube how to's in how to change a patient in a hospital bed, how to roll or transfer a patient , in order to maybe get a better "how to" in how to do this.

As far as linens, I have a fitted sheet, and a draw sheet and a bed pad. Bed pads can be found at like Walgreens, or your local hospital. A draw sheet is a flat twin sheet folded in half.

My husband normally wears a hospital gown and a sheet most days. I would go to your local hospital and see if they have any hospital gowns. I went to my local hospital and when a patient transfers from another hospital they normally change them into thier hospital gowns, and so the hospital gowns they come in can't be used at the new hospital and so they are normally are put into a closet never to be used. So I got like 5 for free.

As far as her chair, I would talk to where you got it from. Our equipment specialist are rigging my husband's chair with another joystick controller on the back of the chair so that I can drive it, as my husband is having a hard time driving it lately.

Hope this helps.
 
Your mom sounds like a wonderful lady. And I am feeling for you. I just wanted to tell you that when I first started using the lift I cried daily for a couple of weeks. It was just such an overwhelming piece of equipment for me...a month made all the difference in my skill & confidence with it. But, I did need to search out help on how best to use it with my mom. Also we had to change slings as greater paralysis set in so as to avoid the shooting through you and your mom experienced. I'd really recommend changing your sling. For us it was the occupational therapist who made recommendations. I also had a couple of firms come & demonstrate their slings & look at sizings.

A bed pan might be worth trying out. It didn't work for us but that doesn't mean it won't for you.

Others have already made good suggestions. Mostly I wanted to post to send encouragement your way. You will find ways of dealing with the challenges facing you. Hugs. Avril
 
Hospice won't help because she is on a vent.
 
Thanks everyone. Wow what a group of incredible people we are indeed. As I stated above, can't do the hospice. I do have another lift which works great but not so good for toileting. We have all of the equipment, we are going to clinic on tues so I will ask about the chair joystick. I have a call in to a local nursing home that has an "at home care" dept. Somewhere there has to be help. God Bless you all!
 
Laura I wish there was more help out there for you! I am so sorry you are doing it alone, like alot of the cals on here.
 
Laura, so very sorry. I wear diapers, a top I can wear night and day, and when up, a lap robe. I believe your mom might do well with diapers and staying in bed. It's far more comfortable. If you have your sister or a friend, practice the hoyer lift with them, insisting they do nothing to help after the first time through, so you can get a feel how to do this with your mother.

The hospice aide brought a trainee yesterday and the hoyer was a near disaster. Took them 3 tries to get me safely out of my chair, put me on the toilet at a very weird angle, and I had to direct the whole time (after the first failure). So don't feel bad, just practice on someone else small like your mother.
 
Laura I'm sorry you had to go through all of that! My thoughts are with you. Hoping today is a better day :smile:
 
I am so sorry to hear that things are difficult for you. I love your mother's attitude though. Being able to giggle all the way through that is a blessing.

We are not at the same stage as you. The only suggestion I have is to continue working with the ALS association and clinic. I can't believe their isn't a hospice option available.

Sending you prayers for strength and peace during this time.
Love and light
Meg
 
Laura, Ann suggestion is great. We practiced using the lift with my son. I got in it, too. We wiggled and slouched far more than my husband does to check the security of the slings. We did all of this in front of my husband so that he would know what to expect. If I think anything is amiss when lifting him, I put him down - floor, chair, bed - and get him repositioned. So far, as I said, no accidents. (knock,knock,knock)

We are checking into a new joystick for my husband's chair. It will be shape like a football goal. We've used all of the others, and he has lost the ability to maneuver them. There is a blow device, but he doesn't have enough breath. I now drive the chair from behind. Hopefully, this new one will work.

I've heard that different hospices have different rules. Have you talked to all of them in your area. Possibly there will be one that accepts patients on vents.

Most importantly, when you doubt yourself or are about to snap, remember we are all here loving and supporting you. You are never alone in this.
 
HI Laura

You might want to try the bedpan idea for bowel movements, and a female urinal for urine. The fracture bed pan has a very low back--thus not causing nearly the discomfort that a regular bedpan can cause. They are about $12.00. You simply gently roll her to the side, place the pan, then roll her over it. The head of bed must be at 30 degrees when she is on it--then lowered, of course, when it's removed.

Bedsores are a major concern--even sitting in urine or feces for short periods of time can cause skin breaking down and thus, bedsores. I'm assuming she already uses pads on the bed--the draw sheet Jason's wife suggested also are very useful for moving people in bed.

I don't know if she can sit up--but if she can be sat up at all--you might be able to use a simple transfer board to get her to the bedside commode?

Does she have any type of insurance/medicare/medicaid that might let you get a part time caregiver in to help you out a little bit? Here in FL, the state will help with those costs to avoid having to put someone in one of the nursing homes here. Diversion program or some such.

I'm glad your mom is a bright ray for you. You've taken on a lot--and of course you need help and support. Abba's suggestion of the Depends might work, too--though some people just refuse to use them at all.

Also--to help protect your back--use a back support when you lift--but ONLY if you're lifting--otherwise, they weaken your muscles making back injuries more likely.

Hugs--wish I could think of an easy fix for you both.
 
Laura

I really do empathise what you endured and read this out to Mick where we both embraced what you were saying completely and like you and your mum we usually end up laughing after similar episodes. Only the other day after a terrible few days of (very loose bowels ) i got him on to his commode took him to the bathroom to clean up but couldn't get the pan off the commode, i kept yanking it but it wouldn't budge and then realised as I yanked Mick seemed to groan when I asked him what was wrong, his dangly bits were stopping me from getting the pan from beneath him. I was obviously so engrossed in the clean up I hadn't given it a second thought that something else was stopping me retreiving the pan, we laughed so hard I nearly wet myself so two incontinences in one family now, its all a learning curve and I have never had to do anything like this before. We are awaiting a toileting hoist and after reading your tale to Mick he is now not so sure. xxx Ang
 
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