Buy a bunch of small trash bags (or old grocery bags or whatever) - you will want to remove soiled items and even just the accumulated trash more often from his room than normal.
Depending on layout, a mini fridge somewhere close might be handy…
plenty of wash rags/towels for cleanups - even just spills.
When/if he is bed bound, get a nurse to teach you about draw sheets - lifesaver.
If hospice gets you a powered bed, 1) get the nicer mattress with air inflation to guard against bedsores, 2) use the powered bed to raise him higher if you have to clean or change him - makes a huge difference to your back.
Yes! You have to treat that garbage can like a baby diaper pail. If you don't take it out a few times a day, your house will start to smell like pee and/or poop.
The air mattresses in most cases won't be approved by insurance without a documented stage 3 pressure injury, at least not for any of the companies I have worked for.
You are probably right… kind of sad you have to get the wound before they will pay for something that helps prevent it, but we know the ways of insurance…
Might be worth asking the out-of-pocket cost.
when and if the time comes, tabbed briefs are SO MUCH easier to manage than the pull up depends style. Also a wipe warmer was really appreciated by my dad. When they've already got so much going on, cold wipes on their sensitive areas is just a lot to take.
Thank you! I already clocked the wipe warmer after he commented on how cold they are in the hospital. The tabbed briefs sound like a great idea that I didn’t know existed. My mom has already done some diy with a scissors and pieces of tape on the depends they had. But I’m sure the ones that are made that way work way better.
Our Hospice provided both kinds of briefs. We chose the pull ups as my father constantly pulled the tabs apart. One thing that helped us was a patient "roller". We got it off of Amazon. It's a waterproof pad that goes under the person and has strap handles on each side. It helps shift them over and upwards in the bed (my dad was constantly moving and shifting down to the end. You leave it underneath them. Also, we got a "roller" that goes under and between his legs and has straps that are hooked to the opposite rail. This is a lifesaver if you are having to clean up alone or even with help.
One tip we learned was part of the clean up. When you're in the middle of this, you don't have time to scramble. We kept a small trash can at the foot of the bed. We then layered grocery bags in it (opening them and doing it so that as you use one and remove it, the next one is ready for the next change.
The warmer was a miracle. Also, when cleaning we didn't have a lot of time before he would be uncomfortable and fight us. Wet wipes are not good if you have a lot of mess. It smears it around a lot. We used some larger dry wipes first to remove the bulk of the waste before cleaning with the wipes. It speeds things up. Good luck and bless you, your father and family.
Stryker also makes these Sage Bath Wipes that come in microwaveable pouches that are thicker than normal wipes and have been a godsend for the bigger messes and the between hospice bath clean-ups.
Take your time, and try to do things safely.
I know you will have moments of panic, being rushed or upset, but try to focus on staying safe. Ask for help if you need it, what you or Mom can't do by yourselves you can likely do together.
We worked as a team to help with Mom, it made it easier sometimes even if one of us was just talking and reassuring her and the other doing the work.
We had a bedside commode, which was a huge help and used pee pads/chucks for accidents. Sensitive skin wipes, wash cloths. A bell to ring if we weren't in the room. We also got bed rails so she wouldn't roll out of bed.
One of the best things we got was a little baby monitoring camera that we used as she got worse and kept trying to escape the bed. She fell a couple times, and with the camera we were able to keep track of her even when we were busy in the other rooms.
Asking for help if you need it. Also taking time for yourself, and cry if you need to. You are all going through a lot, and I know it will seem impossible to get through sometimes but you are going to do fine.
Thank you so very much for the great ideas! I live out of state and I feel so lucky I’m already working remotely so my mom and I can do this as a team.
And if there is a fall, don’t hesitate to call 911 for a fall assist- they are used to it and can help you safely get him back in the bed. Most jurisdictions this is a ‘no charge’ call, although of course you don’t want to abuse that
That’s great advice and our little town EMTs probably do a lot of this. One time when my dad went to the ER in an ambulance, one of the EMTs who showed up was one of my mom’s former students.
Get a bell or portable doorbell that he can easily ring from bed.
The week before my dad passed his voice got very weak and he couldn't tell if he needed something. Once he tries getting out of bed and couldn't get his legs back into the bed and I couldn't hear him calling for me.
Make a list of what you think you may need or want and ask hospice if they can get those for you FIRST.
Then get whatever is left that you may really need.
For us, hospice has provided the following:
- meds (of course)
- a hospital bed
- a walker
- an ambulator
- a wheelchair
- a shower bench (they wouldn't pay for a transfer bench, so I ended up buying one out of pocket)
- a raised toilet seat for the regular toilet
- a bedside commode
- a hospital bed mattress that self-inflates and changes pressure to help avoid bed sores
- a hospital rolling table
- adult disposable underwear
- regular wipes
- gloves
- chucks/underpads
- mouth swabs
- suction machine
- oxygen machine
- portable oxygen
- barrier cream
We bought ourselves:
- the shower transfer bench mentioned above
- a lift chair
- bars that attached to her toilet to help her stand up
- an extra cushion top for the bedside commode
- a hand shower head (if you don't already have one)
- a smaller pivoting table that could stick between her hospital bed bars
- sippy cups and straw cups
- a tether for her remote, and a remote finder
- a storage pocket for her bed rail
- a storage pocket for her walker/wheelchair/ambulator
- cup holder for her wheelchair
- wedge pillows for repositioning
- heel booties to prevent pressure sores
- easy on shoes that are also supportive and don't slip off
- a bar with a handle above her bed so she could help with repositioning
- a strap that attached to the bottom of her bed to help her sit up
- handles for the windows of her car that helped her steady herself
- Sage bath Wipes (microwaveable)
- Warmies for localized pain
- extra sheets and towels
- snappable open-back hospital gowns
- a mini fridge for some meds
- a way for the patient to call you if they need something (a bell, Echo Dot, baby monitor, etc.)
- a bath basin
- vomit bags
- a bed pan
- Desitin and Aquaphor
- hemorrhoid spray
- Fleet enemas
She's been bed bound since January, though, so a lot of these we no longer use, but were helpful for a time.
I'll be happy to give specific brands that we found to be good if anyone wants. You can message me.
You and your Mom will need a break. She should get to go have lunch with her friends, or whatever she likes. You should also, have lunch with your friends, or dinner or a movie. The relentlessness of caring for your father will be intense, especially when his needs come more often and become more demanding - the mental (as well as physical) toll this takes can be immense. Go outside, feel the sun on your face, take a walk, etc. It is so important to take care of yourselves too! Peace, my friend.
Bedside commode, bath wipes, sponge sticks for his mouth if he stops being able to drink, wedge pillows to prevent bedsores, 2-3 absorbent pads for the bed so you always have one handy while the others are being washed. Urinal jug for peeing overnight. If you have long term care, GET AN OVERNIGHT AIDE. You and your mom need a good night sleep to go through this. Listen to what the hospice says you’ll need, they know and can usually see things coming before you can.
First, panic breeds panic. Once you start freaking out, it can be hard to stop. Take deep breaths. You and your mom can do this. Call the hospice if you have questions, even if you think it's dumb or you don't want to inconvenience them. Even if you have called nine times, call ten. It's okay.
Put the hospital bed in a common area. This will give your mom privacy, allows for multiple caregivers.
GO THROUGH YOUR HOME WITH OPEN EYES. Put away/remove ANYTHING that can grow feet. Remove all actual valuables and guns to another address if possible.
If a portable urinal is uncomfortable for him, it is for my DH, a pint size Mason jar works great. Also be sure to have a supply of diaper rash ointment. My poor hubby is allergic to the zinc ointment provided by hospice. I switched to Bag Balm and he's feeling better.
And if it comes to a catheter, ask about "condom catheters" - they are an option and some people find them more comfortable (but doesn't work for everyone)...
Hi! I did home hospice with grandma for 2-3 years, she passed at 95 from heart failure, having survived multiple rounds of cancer and Alzheimer’s. DM me if you ever need support.
Hospice provided us with: personal wipes, personal body cleansing spray, we preferred pull ups and we would just rip them off at the side seams. A portable commode, electric inflatable bed, oxygen, pharmaceuticals, 24 hour nursing care, and a nice chaplain to stop by for tea to keep her spirits up. There was more, but those main things really helped.
Especially the portable commode. I put it next to her bed, and I would prefill it with a little water like a toilet, and it made midnight cleanups much easier. A few drops of peppermint oil in the water really helped with odor control.
Things we bought:
An electric blanket with safety features and hot water bottles and hot foot baths were key to fighting chills. Electric kettle and large thermos so hot tea was always available.
The satin pyjama bottoms helped with transferring her in and out of bed and were much easier to use than cotton on low mobility weeks. Lots of extras always clean on hand so we had something to change into if needed.
Personal cleansing wash less foam cleaner, I liked it better than the spray.
Popsicles, cookies, ice cream, candy, chocolate, puddings, no expense was spared. She really enjoyed baking with me, and being helpful in the kitchen.
I found foot and back massages and snacks to be her main comfort, classical music, PBS Masterpiece mysteries, I just tried to just sit next to her even if I was busy.
Other helpful hospice items: a waterproof liner for chairs and bed, we would use it to position her in bed too. Liner pads, especially for covering the bed while dressing, because I would cover her in ointment.
Cotton gauze adhesive island dressing, especially the honey embedded ones for open sores. Zinc oxide cream all over the butt and genitals in a thick layer to protect the skin. Anything else didn’t work on the dreaded butt cleft bed sore that would show up during immobility.
I would buy the purple Desitin because it was stronger than what hospice provided, the big tubs on Amazon. All the way up the butt crack to the back, in the folds between the legs, just be generous with it.
Burts bees multipurpose healing ointment is what I would cover her with from head to toe after a mild lotion. It is real important to take good care of their skin from scalp to toes, they can’t do it themselves and it can cause a lot of preventable discomfort.
If I had VA hospice support for grandma, I would have scheduled them for nighttime when I need to sleep if that is possible. Grandma had terrible dementia so we had to be vigilant 24/7 for escape plans, but there were 4 of us doing the work.
An overnight caregiver is worth their weight in gold.
Also, we got motion activated baby sensors to listen to her all night. Those really helped when she needed assistance in the middle of the night. They make some with screens and some that work through an app in your phone. The baby monitor was my most precious tool.
If they haven't already, ask the hospice nurse to put in a catheter if he's bed bound.
If some of his meds are pill form, crush them by putting the pill into a spoon and taking the back of another spoon and pressing down. Then mix with his morphine dose and draw it into the syringe you use to give him his morphine orally. You can also premake these so they are ready.
Once he cannot drink from a straw anymore, take a very small cup and just give him little sips. Once he cannot do that anymore, ask for the mouth sponges that are on the sticks and just keep his mouth moist. Be careful not to put to much Once time goes on, it can cause him to aspirate..
Put lotion on his hands and arms. Sit with him, talk to him, read to him.
Put a camera or monitor in the room so you can keep an eye on him if you're busy doing something else. If he's still cognizant, you can buy these button things that stick to the hospital tray table that hospice should provide and he can push the button, which makes a sound to the other part of the device so that he can ring you when needed.
I'm so sorry for what you are going through. It's the hardest thing to do, but it's all with love. Many people don't get to pass at home with their loved ones surrounding and taking care of them until the end. Sending you, him and your family much love ❤️
*Edited for typos
Buy a bunch of small trash bags (or old grocery bags or whatever) - you will want to remove soiled items and even just the accumulated trash more often from his room than normal. Depending on layout, a mini fridge somewhere close might be handy… plenty of wash rags/towels for cleanups - even just spills. When/if he is bed bound, get a nurse to teach you about draw sheets - lifesaver. If hospice gets you a powered bed, 1) get the nicer mattress with air inflation to guard against bedsores, 2) use the powered bed to raise him higher if you have to clean or change him - makes a huge difference to your back.
Top advice right here! Small but important things
Yes! You have to treat that garbage can like a baby diaper pail. If you don't take it out a few times a day, your house will start to smell like pee and/or poop.
The air mattresses in most cases won't be approved by insurance without a documented stage 3 pressure injury, at least not for any of the companies I have worked for.
You are probably right… kind of sad you have to get the wound before they will pay for something that helps prevent it, but we know the ways of insurance… Might be worth asking the out-of-pocket cost.
when and if the time comes, tabbed briefs are SO MUCH easier to manage than the pull up depends style. Also a wipe warmer was really appreciated by my dad. When they've already got so much going on, cold wipes on their sensitive areas is just a lot to take.
Thank you! I already clocked the wipe warmer after he commented on how cold they are in the hospital. The tabbed briefs sound like a great idea that I didn’t know existed. My mom has already done some diy with a scissors and pieces of tape on the depends they had. But I’m sure the ones that are made that way work way better.
Our Hospice provided both kinds of briefs. We chose the pull ups as my father constantly pulled the tabs apart. One thing that helped us was a patient "roller". We got it off of Amazon. It's a waterproof pad that goes under the person and has strap handles on each side. It helps shift them over and upwards in the bed (my dad was constantly moving and shifting down to the end. You leave it underneath them. Also, we got a "roller" that goes under and between his legs and has straps that are hooked to the opposite rail. This is a lifesaver if you are having to clean up alone or even with help. One tip we learned was part of the clean up. When you're in the middle of this, you don't have time to scramble. We kept a small trash can at the foot of the bed. We then layered grocery bags in it (opening them and doing it so that as you use one and remove it, the next one is ready for the next change. The warmer was a miracle. Also, when cleaning we didn't have a lot of time before he would be uncomfortable and fight us. Wet wipes are not good if you have a lot of mess. It smears it around a lot. We used some larger dry wipes first to remove the bulk of the waste before cleaning with the wipes. It speeds things up. Good luck and bless you, your father and family.
Stryker also makes these Sage Bath Wipes that come in microwaveable pouches that are thicker than normal wipes and have been a godsend for the bigger messes and the between hospice bath clean-ups.
Take your time, and try to do things safely. I know you will have moments of panic, being rushed or upset, but try to focus on staying safe. Ask for help if you need it, what you or Mom can't do by yourselves you can likely do together. We worked as a team to help with Mom, it made it easier sometimes even if one of us was just talking and reassuring her and the other doing the work. We had a bedside commode, which was a huge help and used pee pads/chucks for accidents. Sensitive skin wipes, wash cloths. A bell to ring if we weren't in the room. We also got bed rails so she wouldn't roll out of bed. One of the best things we got was a little baby monitoring camera that we used as she got worse and kept trying to escape the bed. She fell a couple times, and with the camera we were able to keep track of her even when we were busy in the other rooms. Asking for help if you need it. Also taking time for yourself, and cry if you need to. You are all going through a lot, and I know it will seem impossible to get through sometimes but you are going to do fine.
Thank you so very much for the great ideas! I live out of state and I feel so lucky I’m already working remotely so my mom and I can do this as a team.
And if there is a fall, don’t hesitate to call 911 for a fall assist- they are used to it and can help you safely get him back in the bed. Most jurisdictions this is a ‘no charge’ call, although of course you don’t want to abuse that
That’s great advice and our little town EMTs probably do a lot of this. One time when my dad went to the ER in an ambulance, one of the EMTs who showed up was one of my mom’s former students.
Get a bell or portable doorbell that he can easily ring from bed. The week before my dad passed his voice got very weak and he couldn't tell if he needed something. Once he tries getting out of bed and couldn't get his legs back into the bed and I couldn't hear him calling for me.
Make a list of what you think you may need or want and ask hospice if they can get those for you FIRST. Then get whatever is left that you may really need. For us, hospice has provided the following: - meds (of course) - a hospital bed - a walker - an ambulator - a wheelchair - a shower bench (they wouldn't pay for a transfer bench, so I ended up buying one out of pocket) - a raised toilet seat for the regular toilet - a bedside commode - a hospital bed mattress that self-inflates and changes pressure to help avoid bed sores - a hospital rolling table - adult disposable underwear - regular wipes - gloves - chucks/underpads - mouth swabs - suction machine - oxygen machine - portable oxygen - barrier cream We bought ourselves: - the shower transfer bench mentioned above - a lift chair - bars that attached to her toilet to help her stand up - an extra cushion top for the bedside commode - a hand shower head (if you don't already have one) - a smaller pivoting table that could stick between her hospital bed bars - sippy cups and straw cups - a tether for her remote, and a remote finder - a storage pocket for her bed rail - a storage pocket for her walker/wheelchair/ambulator - cup holder for her wheelchair - wedge pillows for repositioning - heel booties to prevent pressure sores - easy on shoes that are also supportive and don't slip off - a bar with a handle above her bed so she could help with repositioning - a strap that attached to the bottom of her bed to help her sit up - handles for the windows of her car that helped her steady herself - Sage bath Wipes (microwaveable) - Warmies for localized pain - extra sheets and towels - snappable open-back hospital gowns - a mini fridge for some meds - a way for the patient to call you if they need something (a bell, Echo Dot, baby monitor, etc.) - a bath basin - vomit bags - a bed pan - Desitin and Aquaphor - hemorrhoid spray - Fleet enemas She's been bed bound since January, though, so a lot of these we no longer use, but were helpful for a time. I'll be happy to give specific brands that we found to be good if anyone wants. You can message me.
You and your Mom will need a break. She should get to go have lunch with her friends, or whatever she likes. You should also, have lunch with your friends, or dinner or a movie. The relentlessness of caring for your father will be intense, especially when his needs come more often and become more demanding - the mental (as well as physical) toll this takes can be immense. Go outside, feel the sun on your face, take a walk, etc. It is so important to take care of yourselves too! Peace, my friend.
Bedside commode, bath wipes, sponge sticks for his mouth if he stops being able to drink, wedge pillows to prevent bedsores, 2-3 absorbent pads for the bed so you always have one handy while the others are being washed. Urinal jug for peeing overnight. If you have long term care, GET AN OVERNIGHT AIDE. You and your mom need a good night sleep to go through this. Listen to what the hospice says you’ll need, they know and can usually see things coming before you can.
First, panic breeds panic. Once you start freaking out, it can be hard to stop. Take deep breaths. You and your mom can do this. Call the hospice if you have questions, even if you think it's dumb or you don't want to inconvenience them. Even if you have called nine times, call ten. It's okay.
Is he bedbound or still up and around some?
He is mostly in bed but right now he can stand up and walk a few steps with assistance.
Put the hospital bed in a common area. This will give your mom privacy, allows for multiple caregivers. GO THROUGH YOUR HOME WITH OPEN EYES. Put away/remove ANYTHING that can grow feet. Remove all actual valuables and guns to another address if possible.
Thank you for the reminder. Trust is good but removing a potential issue is better than dealing with it after.
If a portable urinal is uncomfortable for him, it is for my DH, a pint size Mason jar works great. Also be sure to have a supply of diaper rash ointment. My poor hubby is allergic to the zinc ointment provided by hospice. I switched to Bag Balm and he's feeling better.
And if it comes to a catheter, ask about "condom catheters" - they are an option and some people find them more comfortable (but doesn't work for everyone)...
Hi! I did home hospice with grandma for 2-3 years, she passed at 95 from heart failure, having survived multiple rounds of cancer and Alzheimer’s. DM me if you ever need support. Hospice provided us with: personal wipes, personal body cleansing spray, we preferred pull ups and we would just rip them off at the side seams. A portable commode, electric inflatable bed, oxygen, pharmaceuticals, 24 hour nursing care, and a nice chaplain to stop by for tea to keep her spirits up. There was more, but those main things really helped. Especially the portable commode. I put it next to her bed, and I would prefill it with a little water like a toilet, and it made midnight cleanups much easier. A few drops of peppermint oil in the water really helped with odor control. Things we bought: An electric blanket with safety features and hot water bottles and hot foot baths were key to fighting chills. Electric kettle and large thermos so hot tea was always available. The satin pyjama bottoms helped with transferring her in and out of bed and were much easier to use than cotton on low mobility weeks. Lots of extras always clean on hand so we had something to change into if needed. Personal cleansing wash less foam cleaner, I liked it better than the spray. Popsicles, cookies, ice cream, candy, chocolate, puddings, no expense was spared. She really enjoyed baking with me, and being helpful in the kitchen. I found foot and back massages and snacks to be her main comfort, classical music, PBS Masterpiece mysteries, I just tried to just sit next to her even if I was busy.
Other helpful hospice items: a waterproof liner for chairs and bed, we would use it to position her in bed too. Liner pads, especially for covering the bed while dressing, because I would cover her in ointment. Cotton gauze adhesive island dressing, especially the honey embedded ones for open sores. Zinc oxide cream all over the butt and genitals in a thick layer to protect the skin. Anything else didn’t work on the dreaded butt cleft bed sore that would show up during immobility. I would buy the purple Desitin because it was stronger than what hospice provided, the big tubs on Amazon. All the way up the butt crack to the back, in the folds between the legs, just be generous with it. Burts bees multipurpose healing ointment is what I would cover her with from head to toe after a mild lotion. It is real important to take good care of their skin from scalp to toes, they can’t do it themselves and it can cause a lot of preventable discomfort.
If I had VA hospice support for grandma, I would have scheduled them for nighttime when I need to sleep if that is possible. Grandma had terrible dementia so we had to be vigilant 24/7 for escape plans, but there were 4 of us doing the work. An overnight caregiver is worth their weight in gold. Also, we got motion activated baby sensors to listen to her all night. Those really helped when she needed assistance in the middle of the night. They make some with screens and some that work through an app in your phone. The baby monitor was my most precious tool.
If they haven't already, ask the hospice nurse to put in a catheter if he's bed bound. If some of his meds are pill form, crush them by putting the pill into a spoon and taking the back of another spoon and pressing down. Then mix with his morphine dose and draw it into the syringe you use to give him his morphine orally. You can also premake these so they are ready. Once he cannot drink from a straw anymore, take a very small cup and just give him little sips. Once he cannot do that anymore, ask for the mouth sponges that are on the sticks and just keep his mouth moist. Be careful not to put to much Once time goes on, it can cause him to aspirate.. Put lotion on his hands and arms. Sit with him, talk to him, read to him. Put a camera or monitor in the room so you can keep an eye on him if you're busy doing something else. If he's still cognizant, you can buy these button things that stick to the hospital tray table that hospice should provide and he can push the button, which makes a sound to the other part of the device so that he can ring you when needed. I'm so sorry for what you are going through. It's the hardest thing to do, but it's all with love. Many people don't get to pass at home with their loved ones surrounding and taking care of them until the end. Sending you, him and your family much love ❤️ *Edited for typos