when your loved one is bed bound, how do you manage changing them?

LadyTexan

Transferring DH has become increasingly more difficult. He is losing the little ability he had to stand up.

This morning when he woke, he had a mountain of muddy poop in his disposable briefs. I was unable to lift him out of bed. I removed the briefs while he was in the bed and started cleaning him up with Huggies baby wipes and the Aloe wipes that hospice brought by. Meanwhile DH, kept trying to touch his poop covered privates, getting poop on his hands and making the whole situation much messier. 

I got the soiled linens off the bed, I got DH mostly clean, then I threw in the poopy towel. I called hospice and they promptly sent over 2 aides to help me. The aides got DH into clean briefs and pajama bottoms. I made up the bed. I felt like a failure and was near tears....how am I going to do this on my own?

This afternoon, I tried to take DH to the toilet. We both ended up on the bathroom floor. Again I called hospice, 3 helpful women showed up to get DH off the floor and into bed.

If your loved one is at home and bed bound, PLEASE tell me how you do it? How much care do you bring in and how often do they come? Do you have a live in or a helper on speed dial? 

I am not afraid of poop. I have not mastered the roll this way and then that way. I cannot lift him.

toolbeltexpert

Lady Texan I don't have any advice but I sure feel for ya. Your a trooper. Glad you could get some help. Hope you didn't  hurt yourself on the bathroom floor. And you are no failure. Your a hero!

Joydean

Lady T my heart goes out to you and yes you are a hero to many of us! Most of the time you ask them to hold onto the other side of bed rails, some tie something to each side and ask person in the bed to hold onto it while you clean them or make one side of bed. But as you know pwd will not always understand what you are telling them.

Did either of the hospice nurses give you any clues or advice on how to do it? 

Sorry I’m not very helpful. I do hope others will have better ideas 

Twin Mom

We use a bed that will become super hard for changing, dressing etc...and then it has alternating pressure to prevent bed sores when not needing to change. On a regular bed you will be fighting the sinking into it which is a back killer and just makes it so much harder.

I use ultrasorb bed pads from Medline under him...they are pricey ( $2 a piece or so)...but I can use them to shift weight around back and forth...walk from one side of bed to the other to pull him from side to side and then roll side to side as needed.  I also use briefs which are just another name for diapers...but makes it so much easier.

I use adult washcloths that are disposable but large and come from Sam's Club but I buy them on Amazon, and they are much larger and less expensive than anything else I've used.  Box of 5 packages and total of 240 wipes I believe is usually around $12.

And did I say, there is nothing fast about this...but it keeps me from hurting myself...and gets the job done.  We use Miralax to get bowel movements...and usually have about 3 a week, first thing in the morning.  Very predictable based on when I give the Miralax and that helps too.

I did invest in a transfer sheet which was supposed to make it easier to do all this...but in the end it was expensive...and really didn't do any better than the ultrasorbs.  You can also use a doubled sheet under him from side to side to do all the pulling, rolling etc...but it is one more thing to wash.

The little blue "chucks" that most places want to provide in my experience are pretty worthless for doing the heavy lifting.

Hope this helps.

Lills

Hi LT,

I was in the same boat as you two years ago.  I couldn't change my bedbound DH!  I didn't know what to do.  His hands were all over the mess.  

Then Eureka!  I found Lavin Straps online.     https://www.lavinlift.com

It took me a while to use them properly.  In fact, the first time I tried (with a CNA with me), he legs were starting to turn purple!  I quickly learned that I needed to have everything e.g. wipes, pads, gloves, set out and ready to use.  I can now change even the worst mess in minutes.  I do need to wrap DH's hands up a bit in his blanket so his hands can't reach me.  Voila.  It's the greatest invention ever.  If I hadn't had these, I would not have been able to keep DH at home.  Period.  You need a hoyer lift but hospice provides that.  Hospice loves the Lavin straps!  

By the way, if you do buy them (hospice does not pay), and if your DH is between sizes, get the smaller of the two.  In time, he'll lose muscle mass and the larger ones will be too big.  I called the company and talked with the rep.    

I have a CNA provided by the VA 3 hours a day.  They help lift my DH from his bed into his lift chair, again provided by hospice.  When DH is out of bed, we change his sheets. 

The next challenge I had was washing his hair....I bought an inflatable hair basin and a water bag.  Again, the first few tries were a challenge; I got water all over him and the floor.  Sometimes, I still get the bed wet but I only wash his hair when I know the CNA will be coming. 

Hope this helps!

abc123

Lady, I'm so sorry he is at this place in his journey. I think of you both every day. You are in my prayers.

I can no longer change my LO. She is declining quickly. I don't know how to describe it medically but she is getting harder and harder to move at all. She keeps her arms crossed and her legs crossed. I physically can not move her or uncross her arms/legs. When she first became bed bound I could change her and clean her. She could even cooperate by rolling side to side. It was difficult and time consuming but it was very doable. I hope and pray that your DH can still roll. The best I can do now is to keep a disposable chuck under her bottom at all times. It helps to make cleaning her easier and protects the sheets in most cases. Dad has to pay sitters. This year he will spend over $120,000 on sitters. I just can't do the hands on care physically anymore. 

I am not handling stage 7 well at all. 

loc3762

Here's how I change my DH:  I have a cling that I purchased from Amazon that I place under his knees.  I loop both sides to the Hoyer lift.  I then hold his lower legs to keep them bent and pump the lift up.  When we are high enough to side out the diaper, I continue to hold his legs and wipe him down them I pull out the dirty diaper and slide a new one under (I use the tab diapers).  The secret is to have everything ready when you begin.  Hope this helps.

Doityourselfer

Lady Texan,  

My heart goes out to you.   It was extremely difficult to change my husband by myself when he was bedbound.  I placed many disposable pads and washable pads on his mattress, under the sheet and above the sheet.  He couldn't follow any directions so I did my best trying to roll him from one side to the other.  Most of the time the brief was loose but the pads underneath were absorbent.  It's much easier when there are 2 people there but I know that's not always possible.  You are an amazing caregiver.

Ed1937

Lady, I'm so sorry you are dealing with this. I have no answers for you, but I have been wondering how people handle it too. I'll keep an eye on this thread, hoping to learn something more.

M1

Me too Ed.  All of you out there handling this, my heart goes out to you and my hat comes off.  Hang in there LT, Twin Mom, abc, loc, and all the rest.

JDancer

If you want to pull a LO up in bed and have another person to help, here's a little trick. Use a folded sheet under the LO as a "pull sheet" but place a garbage bag between the pull sheet and the bed. The person will slide easily. The sheets and garbage bag are placed underneath by rolling the person back and forth.

LadyTexan

THANK YOU EVERYONE.

This morning I asked hospice to bring a Hoyer Lift. I looked up the Lavin Straps online and will talk to hospice about them this morning.

Twin Mom, thank you for letting me know it is not a speedy process. That gave me an extra does of patience this morning when faced with another mountain of muddy poop. I took my time and kept my cool so much better than yesterday. To keep DH's hands away from his poop covered privates, I convinced him to cross his arms over his chest. We made a joke that we were Gangsta Rappers and gave ourselves Gangsta names. That lightened the mood ALOT.

DH refuses to roll. I may trick out the bed rails with colored duct tape in hopes of providing a visual cue for him to see and hold onto.

I consulted with my brother last night about what I should do. He and I concluded that I have 3 options:

1. Keep doing what I am doing, which we both agree is unsustainable.
2. Bring in more help.
3. Place my husband.

I asked hospice the same question this morning. The CNA stated that most people in my position, have given up by now. They have placed their loved one. OR they have brought in more help.

Help in our area is around $22-$25 per hour. Its sad that I think of everything in terms of how much care could I pay for with whatever money we have coming in. Like many caregivers, we are middle-ish income (my pension and his disability are around $50K annually). DH doesn't qualify for some programs because of his age. He is ineligible for other programs due to income/assets. However, the income assets are not sufficient to self pay for much care. He separated from the army in other than honorable circumstances which has necessitated a ton of paperwork from the VA. 

I will reconnect with an elder law attorney to evaluate our needs based on our current financial condition. When I engaged the attorney in Austin, we did not yet have our retirement cottage and now we are down to one car.

Thanks again everyone for your support and guidance.

I am grateful for all of you. God bless you and your loved ones.

Ed1937

We are not in that position yet, but if you have to hire help, how can you know when you'll need them? I doubt they'd be on call to cover different hours, and if you call them to say "I need help for an hour or so, right away", I'm sure that wouldn't work. Then if they have minimum hours, how many of us can afford that?

LadyTexan

you are so right Mayor Ed. If the past 2 days are any indicator, I will need help at 6 am for a code brown. The hospice main office opens at 8 am. But they do have people on-call during the night. 

I have held off calling until 8 am. I hate the idea of DH tolerating my less than effective clean-ups that occur between 6 and 8 am.

Beachfan

LT, 

I am so sorry you are having to deal with this latest dilemma.  I don’t know what I’d do were I in your shoes.  At DH’s MCF the other day, an ambulatory resident, still able to articulate a problem, requested caregiver help “with his back end”.  It took two staff to assist him.  I can’t see your situation being sustainable for much longer.  I hope you are able to get the help you and DH need, in whatever form that may be.  Best wishes.

Paris20

Lady Texan, my heart goes out to you. You’ve gone above and beyond human endurance. Know that your heartfelt post has helped me think through what I would do, or should I say WILL do, when my husband reaches that stage. He already has digestive issues and I cannot imagine cleaning that up. I couldn’t have your fortitude. I know that. There is no right or wrong here. We all have to make «the decision.» I am very grateful to those who educate us through their own difficult choices.

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aod326

Hi LT - goodness the things we have to learn on this journey! You've received a lot of tips already, but this is what helped me: this is probably the time to move away from disposable briefs and into "tab" adult underwear. These are the ones that look like diapers, so you may get some resistance from your husband. They make changing so much easier though, because you just whip it out from under him. If you roll him onto one side and push pillows between him and the side of the bed, that will keep him on his side and also mean he's less likely to get his hands in the mess. You can clean him on one side, then use the pillow trick on the opposite side. (Honestly we ended up using every pillow in the house to keep him propped up in one manner or another!)

Also, I used a tip I'd found on here. I bought a couple of rope dog toys and put them in his hands. They kept him busy. To be honest I think he didn't know how to let go of them, so I did feel a bit mean, but it worked! See the attached photo for what I mean. (I know he looks crazily healthy in this picture - it was his end-of-life surge.)

Adult size wipes, or face cloths, are going to make a huge difference!

In terms of additional care, would your home accommodate a live-in carer? That's what we did, and a live-in is way cheaper than an hourly-paid person. (Still not cheap.) Initially I hated the idea and wouldn't even consider it, but it worked out so well, both for Michael and for me.

Best of luck.

Battlebuddy

   I am at this point and we are pulling it off. I have a bad back. I was worried about being able to do this. I just decided that I needed to develop a technique that worked for me. 

   I don’t try to lift my husband . Most of what I do involves sliding. I use a chuck on the bed and a cut up shower curtain so that I can slide the chuck easily under him. I kind of do one side/ cheek and then the other side. use pulls ups exclusively and have developed a technique for pulling up on one cheek and then go around to the other side of the bed and pull up over the other cheek. You have to push down into the mattress and slide forward to get over the  curve of the cheek.  

   All of this takes practice. The clean up used to take me twenty minutes of wiping. I too kind of wrap his hands in the blanket. Just keep repeating “ I’m just helping you get clean” I felt very inadequate doing this. But if you take the leg closest to you and cross it over the other leg , it helps to get a turn started. If they resist it is hard. Sometimes I wait for distraction. I pull/push on the upper arm closest to me and that crossed over thigh.If you can get them to grab onto the bed rail they hold on for dear life and you will have to pry them off later. By turning them you get access to the butt crack, where poop remains. The Hospice CNA can clean a bowel movement in one quick motion. I haven’t been able to do it. 

    I guess I just gave myself permission to come up with something that works for me. I have no help except Hospice bathers . It’s been six months and he has no bed sores and is clean. It gets better and you get more efficient over time, you also build up certain muscles . It helped me that my husband lost some weight too.  

I hope that helps. 

Pam BH

Lady Texan, my heart goes out to you. One thing I know for sure is you're the strongest lady I've ever met (?well, not really met) and you'll ingest every tip you read and come up with what works for you. You as well as all the people who responded with their techniques are truly heroes and I applaud each of you. We're not to that point yet but I hope I can do half as well as you all when we reach it.

LadyTexan

The Hoyer Lift was delivered last night. The Lavin straps should be here on March 14th.

I learned some more tips and trips:

1. DH doesn't need to wear jammie pants now that he is bedbound. Jammie pants just hinder the changing.
2. I cut his shirt up the center of the back of the shirt, so that it is open like a hospital gown. This makes taking the shirt off and on easier.

Battlebuddy

   I do that too Lady Texan. I have a couple of shirts cut up the back. I also find an extra large shirt is easier to get off someone who is lying down. It stretches around the elbow and over the head better. We put those on when the Hospice aide comes and they can lift him to tuck down the back.I also keep shorts off. Just the depends with a smallish blanket over him. I just cut up a twin quilt ( in half) . Less bulk in the bed, but I live in Florida so don’t need much. A small fleece works well too. I have two half quilts and two half fleeces and I’m constantly washing and switching them out but at least they fit in the washer. 

   I hope you are starting to feel a little better about the “ brown alerts” I really think you can figure it out. You have figured every else out. Your an amazing caregiver. And even with help you would have to do it at least some of the time.  

Jo C.

You are as always, like cream, rising to the top of any challenge.  There are actually YouTube Videos demonstrating how to do such changes in a bedbound patient. If you use Google, you can easily find them if you wish. Even with a lift, there are some good hints in the videos.

J.

toolbeltexpert

Lt you are such a trooper, I like your positive steps you plan out. I am learning so much from the others. Glad you got some equipment I hope it is a blessing for you.

abc123

LT!!! You continue to amaze me! I am going to cut mom's night gowns up the back! She only wears short gowns now, sort of like an over sized T-Shirt. I would have never thought of that! Thank you! I'm glad the lift has been delivered, that's good. Sending you love & peace! Hug my buddy Hap when you get the chance! My pups are such a comfort to me. They lay under mom's hospital bed. 

PS I have learned a lot from this thread. Who'd ever thought we'd know this much about poop!

One must do what one must do!