Needing Help

[Jason's Dream]

Please let me know how you take care of your PAL, in regards to rolling them in the bed in order to clean them up from BMs. Is there a service we can call? Is there a way to get around things and get homecare in somehow? Does assisted living places help with that? I need answers and I need them ASAP.

Jason's family has pushed me to the max, and I need to find help in some way to get help to come in to help me change him when he has a BM. Thats the only help I need, and yet, it seems to be impossible to get such help.

His mother and sister have pushed me too far today and I am at the point of throwing my phone across the room at a wall and screaming!

I get a text from his mom out of the blue (considering she NEVER texts or calls to ask how he is doing) saying she wants to start coming over several times a week etc, and what days work best for us. Well, one, it sounded pushy, but two, she actually texted before rudely barging over (for a change), so I tried to explain that each week is different and there is no schedule. We have hospice coming in daily, and sometimes 2-3 people come during the day, then we have day trips planned for Jason to be able to take William to see and do things he wants to do, as well as date nights for Jason and myself, then we have ladies coming in to help with keeping up with the house. This doesn't include the times I need to do grocery shopping or functions at our church. But she doesn't understand and so she was like "which works best, weekends or weekdays".. so I thought I was being good and say, how about Fridays from 1-4. She said fine and said she'd see us tomorrow (today). A few minutes before she was suppose to be over here, she texted that she had to cancel. Who cancels on thier son? thier dying son? Then she was like, can't make it, how about tomorrow? I have plans tomorrow, so it didn't work. So I said see you next friday. Well, so then Jason has a BM, I texted his sister, she doesn't reply, instead, for the third time this week, she just sends someone else over. She has sent her husband over and now she sent Jason's mom. The one that couldn't be bothered with coming today, that I saw on facebook when she was suppose to be here. His sister, doesn't reply that she cant, do you want me to text "such and such"? She takes it on herself to tell someone to come over. Who invites other people to a house that isn't yours? She is not Jason's wife and it wasn't her call to make.

I am soo done with his stupid family. Sorry, just need to vent. I've been trying to be as good as I can, but we are the ones that are losing each other, going through all of this, why do I need to be "nice" to people that don't care about us, that don't respect us or our decisions, that don't like or love us, but only care about themselves and thier own misplaced guilt? Its our house, why do we need to let them in here?

Then the whole time his mom was here, she was constantly telling Jason about the negative family drama. How do you squash that? How do you let people know that he doesn't need to hear crap like that, etc?

Sorry for the vent, but need to know new avenues, as I have had enough.

Thanks.

 

[chriss]

Hi, sorry that you are going through all these things with the family. The last thing you both need is extra stress when dealing with ALS is already a handful. In terms of BM's I can only say what works for us. We have a hoist and my husband stays under the sling all the time. I hoist him up so he is like sitting in the sling above the bed and put a bucket underneath. We can't/don't roll him he stays always flat on his back as he is a big guy and also his breathing would be too restricted to be on his side.

Thanks
Chris

 

[notme]

HI

If you don't have a hoyer lift to use a bedside commode or bidet in the bathroom....

To turn him on his side yourself, put one arm over his waist and bend the knee slightly on the same side. From the other side of the bed, put one hand behind his shoulder and the other mid-thigh to pull him toward you. That's the easiest way to position one on their side for cleaning--and the bent leg gives you the access you need to clean creases and folds.

Heck, hon, take advantage of whoever comes over to get the help you so desperately need. But you have a right to set the rules in your own home. Simply explain that you don't want him upset, and if they won't follow your requests, they won't be welcome in your home.

I feel so bad for all the struggles you're having ;( Is it possible to get some aid from your church family?

Barring all that--you might post an ad on Craigslist asking for someone that can come over on-call that lives close for $10- bucks an hour or so.

 

[Miss]

Do you have a hoyer or invacare lift? If not, does your ALS/MDA loan closet have one, hospice? It will make your life so much easier. You will be able to handle anything that comes up on your own. My husband is a big guy, now a quadrapeligic, and I can handle anything by myself. It is great having folks come in to help me, but I need to know that I can take care of my husband when no one else is around.

 

[catcaniac]

I agree with notme on the turning. We use a fractured bedpan with Eric as it slides under easier. I usually pull him towards me with the draw sheet with the bed entirely flat. I then take his upper knee and cross it over the other leg towards the other side of the bed, away from me. Then I take the same side arm as the knee I just moved and lay it across the top of him towards that side. Then I put my hand on his shoulder and push the upper torso, while holding the knee over the other. Once I do that, he usually will sort of lay on his side on his own with his behind facing me because his knee touches the other side of the bed and his head rests to the side on the pillow. I just have to make sure there is plenty of pillow and bed for him to roll to. Then I slip the fractured bed pan under him still on the same side. Btw, I put a double paper towel across the top of it so that it catches what comes out. I then take his top leg by the knee and pull it back towards me. Then I pull the rest of his upper body back flat. I go to the other side of the bed and pull the bed pan towards me, if necessary, to sort of center the pan. I then put the head of the bed up and put the urinal under him on top of the fractured bed pan as he usually urinates while he is having a BM. When he is done, I take away the urinal and repeat turning him over from the same side I started on. I always get 3 washrags and the laundry bin at the bed for clean up while he is on the pan. Some prefer wet wipes but they tend to irritate the skin so we avoid them. I start to pull the bed pan out while my left hand rests on his hip to keep him turned. I try to wipe up with the bed pan as I take it out so that the paper towel catches as much as it can, lessening the amount to wipe. Then I finish clean up with the washrags. I then pull his top knee back towards me and then his upper body. I always have a waterproof pad under him so that if there are issues, the whole bed doesn't have to be changed, only the pad. Some say, use the hoyer lift but we don't keep it in the room because it takes up so much space and by the time you turn to get the sling under, you could already be placing the fractured bed pan anyways. Still the same amount of turning in the end but more work, in my opinion. My hubby is 6'3" inches and has gained back a good deal of weight with the PEG and I do BM's by myself with him all the time.

 

[Miss]

Honestly, for bm's, to move my husband from the den to the bathroom (other side of the house), clean him up, redress him and take him back to the den takes a little under 20 minutes. I use the lift and the shower/commode mobile tilt chair to transport him.

 

[jwife]

I am so sorry that you are having to deal not only with your husband and ALS, but with contrary in-laws. Both are really hard battles to be fighting. I can't help much with the cleaning issues. Thank goodness, I can still lift my husband and put him on the potty chair (probably not for much longer). Do you use depends or something to help contain the bowel movements? I have found the moist wipes like baby wipes are really helpful and there are some brands that can be flushed. They are easier than washcloths because you can just throw them away. I have to say that the stools from the Jevity formula are much worse than the stools from when my husband was still eating. I have not found anything to be as sticky and hard to clean. Sorry, the details may be too much, but I think we can talk about anything without shocking one another on this forum. Those kinds of things are just a fact of life. I have an in-law story that I would love to share, but can't. Wouldn't want my sister-in-law knowing that I talked about her in an unkind way. Hope that you can find a reason for a small smile.
Janis
P.S. I think it is sooo cute that you still have date nights with your husband. My husband and I are almost like 2 strangers living in the same house now. It makes me so sad.

 

[Atsugi]

One key to BMs is to know that "what goes in on time, comes out on time."

Solid and semi-solid food take about 18-19 hours to get from front to back.

We use Benefiber dissolved in juice to encourage regular timing.

My kids, aide and I take turns putting Kris in the Hoyer lift. It has a battery operated motor. One person can easily move a PALS from bed to shower chair, then pull/push the shower chair into our family bathroom, where the HOLE in the chair is positioned over the toilet.

I wipe her tush by reaching from under the chair, because her bum has gotten so large I can't reach it from behind.

We use baby wipes, not toilet paper.

 

[LauraW]

We use a hoyer lift during the day. I have the commode up against Mom's bed so that there is back support. Somdtimes I have to put a pillow behind her to support her back better. I lift then wipe because the lift has a hole in the sling for her butt. At night we use a bed pan. Hope you get some help soon. I have learned to NOT depend on family. So sad but it is the truth!

 

[LizT]

Note to jwife- Do you give your hubby any stool softeners? Any fiber? Laxatives? I was just curious because these can help soften up the BM's so they're not so tarry.

 

[catcaniac]

We started using a product called Beneprotein mixed in once a day with the PEG feedings. It has really helped with not having to use stool softeners so much and has made him much more regular. It also has proteins that are supposed to boost the immune system, etc.

 

[Jason's Dream]

Thank you for all your replies.

Currently his pain level is up. His skin is soo sensitive, and his joints are stiffening up. Hospice supplies "chucks" and so he goes on them, but sometimes they don't catch it all. Then we roll him and clean him up and wash him down, and reapply the bag balm on his bed sores. His skin is breaking down, so we were told not to put anything on his bottom area, and just cover him with a sheet. This way the depends or his shorts and all wont break down his skin. We have shirts that are cut up the back for him to wear, but he prefers the cotton and "roominess" of the hospital gowns. His butt and all hurts too much to do a bed pan. I only have a "manual" hoyer lift with a sling that as no head support and his neck muscles are becoming "floppy". Not to mention, he has lost the ability to know when he has to go, much less be able to push it out. We currently put murelax in his PEG tube daily to keep his stools soft to avoid impactions. Oxygen and the "comfort" (death) meds are here for when he needs them. Currently, he has been asking for more pain meds, which, if you know Jason, he never takes pain meds. He aspirates and chokes daily on solid food, but he still wants to eat solids as long as he can. We are within 1-3 months of the timeline the doctor thinks, with Jason' progression of his disease, till he passes. He now has full bed rails because he was getting too close to falling out of the bed.

I really appreciate you all, and being able to vent, and ask for advice and such.

Thank you.

 

[notme]

HI

I'm sorry--I don't know your first name.

Have you asked the nurses about opsite? It's a clear bandage that is used most often in nursing homes for pressure sores. It will also protect them from getting any germs and can help prevent sepsis. For those that don't know what it is--think of the clear plastic you see when you have an IV put in--it comes in various sizes--it also allows for keeping an eye on the pressure sores.

Can hospice provide you with a larger lift sling that will give his head some support? I wish there was more I could offer in way of suggestions.

 

[alightsey]

We have a voyager lift not cheap at all and insurance didn't help with it. But we use a sling and that's how we lift dad up to clean bowel movements. Most of the time he wants to be lifted to use the bathroom. I'm so sorry for what you are having to go through with the family. Most of ours don't even come to visit and if they do it's for like 5 minutes. We have my dad who has ALS and my grandmother who had a stroke living with us. SO I know how tough it is. I'm praying for you and your family.

 

[abbigaill2]

HI This is so hard for you both. Ric was on antibiotics which gave him a yeast infection (diabetic as well) and his bottom was broken down badly. I got a padded bandage that promotes healing. Stayed on for a week with out having to be changed. and according to him felt good the minute it was applied. It comes in large enough sizes to cover both cheeks and the tailbone area. It is called Allevyn. I swear by it . Hugs to you on this difficult journey.