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Make a list of everything you have and if you have time, go to Offerup and offer them for FREE. Offerup is all cell phone driven, but it's very local. Private parties will take those items. I do it all the time. Institutions won't take those health care items because of lawsuits. I hate for that stuff to be thrown away too.
DO NOT give anybody your cell phone number. Stay within the Offerup app. There are some scammers out there.
A lot these things are dependent upon cognitive function and whatnot, but just a few things I've seen and/or used.
A bed "alert" at the first sign of any leaks. This may or may not help. It may wake him up and stop him - or it might annoy him more. But also, it can alert you before the bed gets overly soaked.
A set of pajamas that zip in the back to prevent removal
Layering the bed with a few sets of sheets/underpads/protective liners so that you don't have to remake the bed - just strip the first layer off
Stop fluids at 6pm
Booster pads in his pull-ups (They are non-adhesive and just sit right in the pull-up. They stay in place well and add a bunch of absorbancy.)
https://www.amazon.com/dp/B011OJXM7S/ref=cm_sw_r_cp_apa_glt_fabc_CY8MVM0SAFRE543WQVEY
/u/Ok_Mention1690's idea is awesome and I second it.
in re: discomfort. poTAyto, poTAHto, it's pain, but a lower-level one. Talk to your hospice team about getting really aggressive with pain meds and adding anti-anxiety meds to her regimen, if they're not already in play. In some cases this may speed end of life, but you know what? She's dying anyway, so making her physically comfortable should be a priority.
in re: your stepdad. You don't mention ages so we don't know how old they are, and you do mention he's been a pill for most of the time you've known him. Seeing a spouse die is one of the most stressful things in life. Does not mean he's right to be a jerk to you, especially for someone who does not believe in mental health, but if I was in your shoes I'd grey rock him and focus on your mom.
If you're up for a quick read about death/dying/hospice, I recommend Midwife for Souls, which I found very helpful for a hard topic. I'll be holding you and your family in my prayers for a smooth and painless passing.
I use an inexpensive baby monitor with my dad: https://www.amazon.com/gp/product/B00JEV5UI8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 I still get up with him several times a night, but we’re not in the same room.
Maybe she needs to get a bedside commode and a pivot disc to get in and out of bed on her own if that's at all possible. If not then that could save your dad some time rather than getting her to the bathroom every single time.
Another solution would have to be her wearing diapers at bedtime, reducing nighttime fluid intake, talking to her doctor about adjusting the medication she's on or something that she may need to reduce bedtime urination. I'd speak to her doctor for sure to see what can be done. Perhaps she's taking her Lasix too late in the day which is causing her to have a large bedtime output.
The lack of sleep isnt helping either of them.
Have you tried inserts? My dad was calling every 2 hours to be changed as well, so I started putting inserts in his diapers at bedtime. Now I only have to wake up once per night The best part is that I often only need to replace the pad, rather than a full diaper change. I'd recommend giving them a shot. Here's the brand I use: https://www.amazon.com/gp/product/B072LY2FT2/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1
The lifts tend to "taco" you and some don't like it as they don't trust being on a moving "swing".
But, it makes life so much easier. We have an electric Invacare Reliant. I don't personally like the welding and gates (rigid straps are a pain at times), but the VA paid for it so I won't complain too much. It's expensive though.
With that said, the SLING is what you really need to worry about. There are many and you'll have to try a few. We started with 2, bought one on Amazon (which we'll have to replace soon), etc. They all have their pro's/cons. One of the slings, we don't use anymore - it's basically a backup.
Toileting/Shower slings have a hole in them and stay with the person, even while wet. We use one of these.
Full sling with 6 straps: Abandoned after a few months. Took forever to get the proper config worked out and it just wasn't working for a wheelchair since we had to leave it all the time.
Back/leg slip-under: Best one we've found so far (via amazon). Allows us to put it on anywhere since it just slips on, but some might not like it since it may feel like it's just an "open butt" type.
It's actually a very risky time, especially if your patient was a loved one. Sooner or later, our caregiving days will end and most of us will ask this Existential question, "Now what?"
I don't have an answer, but if there are caregiver support groups near you, join up. Now that the pandemic is on the wane , they should be starting up again. I recommend a real one, not an online thing.
I also recommend this book Bouncing Back. I found it helpful.
I feel your pain (and so does my back). My father is similarly disabled and I’m his full-time care-giver. I do all the toileting in his bedroom. He can walk with my support and his walker but I don’t like the idea of taking a tumble in the bathroom with all the different surfaces he could hit on the way down. I use a bedside commode with plastic liners that are easy to dispose of for number two. Its nice because he’s able to transfer from the bed without me having to hold his entire weight. For pee I use a bedside urinal with a tube, he’s able to use this in bed without any help and all I have to do is empty it. For the little spills that sometimes happen I place a chuck(absorbent pad) on the bed beneath his midsection and change it out as needed.
I’ve also had the conversation with my sister about how abrasive my dad can be and how I don’t think he’d be well cared for in a facility so I really empathize with your position and respect you for what you do for your dad. We do have to remember to care for ourselves too!! And that includes making caring for others easier on ourselves! I hope you get some good strategies in place that eases your pain!
Thirding the baby wipes. Also, a $20-30 baby wipe warming machine will make a huge difference. This is the device we got, but there are many others online that look more similar to a printer than a baby/nursery item so that it can feel more adult-like.
It happens to all of us. It will happen again and you will probably throw up again and then you will get use to it and you won't throw up. It's one of the more unpleasant aspects of life, but think how your mother feels.
Tip: Get some large trash bags, towels, a bucket and keep them handy for future occurrences. Vick's vaporub under the nose helps and I recommend a product called Odo Ban for help with the cleanups.
Respect.
First, you are doing a good job, and don't let anyone tell you differently.
Second, take some deep breaths and know that no matter what, things will be okay even though there will be days where it doesn't feel like it.
In terms of the incontinence, it sounds cliche but light a candle. It helps, and it will get easier after a while. Otherwise it depends on her capabilities. If she is able to stand and help clean herself, it's going to be way different than my situation, where she is immobile and we have to roll in the bed to clean. Either way, invest heavily in pre-moistened wipes/adult washclothes. Some reusable bed pads something like these are also really useful to have.
I understand what you’re going through. My father also has Parkinson’s with dementia. He is almost entirely wheelchair bound. We do use a gait belt to help with pivoting from wheelchair to bed to lift chair etc. I found a pivot pad that I use in conjunction with the gait belt that has been life-changing for me. I just use the belt to help get him up out of the chair, making sure the pivot pad is under his feet. Then just turn him as a unit and sit him where he needs to be. It’s like a lazy Susan for people. I have to say my dad does have a urinary catheter due to retention and he is constantly fighting bladder infections. So if you can use some sort of urinal like what has been mentioned that would be a better choice.
> She is very volatile lately (more than before) screaming if she doesn't get her way, berating us about not making her a priority. If she doesn't feel like everyone is hands on at all times she gets very angry
This is known as Elder Rage. I recommend a book called Coping With Your Difficult Older Parent. You will be establishing boundaries and of course, this is easier said than done.
I often add a 1/4 cup of Odoban to the wash.
There are several techniques that caregivers use to handle the angry, irritable patient. If the person is in pain or in mental decline, you have to remember that you are dealing with a disease and not so much a husband, a mother or an uncle anymore. This is what they taught us in school and is especially true with Dementia patients.
I have one such patient now. She has a host of medical issues and hasn't had an easy life. She is also End Stage. For me, I often use the "walk away" technique. There is no sense in trying to be reasonable with her as she is incapable of this now. Arguing with her is equally pointless. I just nod in agreement and walk away.
Now in assisted living facilities, they rotate personal and that has the advantage of keeping patients "off balance". While they may yell at me for whatever I am doing, tomorrow, they get Yolanda, who just laughs at the patient's outburst. Next week, Brian is the caregiver and the patient has to deal with yet another reaction. Often, the patient's behavior abates.
I recommend a book called Copying With Your Difficult Older Parent. Many of the techniques work with difficult hubbies as well.
I also recommend a book called The Caregiver's Guide to Dementia. Some cases can be really challenging, but remember, you are dealing with a disease as well as the person who has it.
https://www.amazon.com/dp/B006ZT4VA0/ref=cm_sw_r_cp_apa_fabc_3PTcGbXBKDBTZ
This stand has been great for my mom for her phone and tablet. It can also hold up flashcards for therapy and collapses to a really convenient to store/carry. It's not the same as holding the phone, but can be a good option if there is an over the bed table that he uses.
We use something like this: Care me Powerful Electric Foot Callus Remover. Amazon Link $23
Try to use it every night while watching TV. Toss an old towel over the ottoman to catch all the dead skin and go to town—best after a shower or bath to soften that dead skin.
Cellulitis is just so odd. My wife had a hole tunnel between her toes, showers daily, washcloth between toes but still have cellulitis. Bloodwork showed staph and strep in her system. Nasty stuff.
Best wishes on keeping it under control.
You have taken her as far as you can. Your point of departure is her point of arrival; two different sides of the same sign. The next few steps she takes on her own. You have earned my respect.
If you have time, read I Wasn't Ready To Say Goodbye.
This is one of the toughest things that you can go through. Not eating, no sleeping are common complaints. Been there.
Check with her insurance to see if they provide for any "in-home" nursing. This is will give you a break and stop you from feeling so isolated.
I also recommend reading, if you have time, Cruising Through Caregiving. Bad title but a good book.
We've been using the Kasa cam.
Just plug it into an outlet, then it's pretty easy to sync up your phone to it. Has a decent night-vision picture in the dark. Has a microphone. It has some sort of motion detector but I haven't used that.
We have two set up.
(I work from home. My wheelchair-bound 89yo mother with some dementia has her room at the other end of the house. I can keep the video camera on while I'm working so that I can see if she's "making a run for it".)
Here is an Amazon link for it, if that's allowed. (Just a straight link, no commission or whatever.)
She did not take the pillow out of maliciousness. She is like a toddler. She can not think past her own needs.
Get a 2-3 of these washable chair pad for incontinence off Amazon
In my first caregiving experience I cooked so my Mom only had to take it out the fridge, stick it in the microwave and eat while I was at work. I thought I had things covered. I never thought about HOW with both hands on walker she was getting a plate to the microwave and then to a table. Turns out there is a tray that fits over the walker she could place things on to get to the microwave and table. Game changer. I also attached a totebag to the walker so she can carry a book and water to the front porch. Some things may simply be logistics. Then again she can be like my MIL a year post breast cancer who will only make a sandwich for lunch/dinner if I leave her alone all day.
I also used a product called pea pods; a mat that can go under her, is very absorbant and washable. Much better than ordinary ones. https://www.amazon.ca/PeapodMats-Waterproof-Reusable-Breathable-Protector/dp/B07GFPZJ86/ref=mp_s_a_1_4?adgrpid=60266043519&gclid=Cj0KCQjwk5ibBhDqARIsACzmgLTXu3DtjdCC_W8gwR2lrJ0XPBuTnqPo1iVYzvmFV33GFRMX9rr2xn4aAq4bEALw_wcB&hvadid=6041819205...
Consider oil space heaters like this one. I live in a basement, and my grandparents heat the upstairs to 19 Celsius in the winter which means downstairs is about 17 if I don't use my heaters. I have one and it sits in the threshold between my office and living room, and it heats both spaces just fine. I have a second for my bedroom, and I spend so little time in the bathroom that the household heating works just fine for that purpose. They're cheaper to run than many other space heater options.
Would something like this work?
Coping With Your Difficult Older Parent. Read it, if you get the chance. I use some of these techniques on my more difficult patients.
There is a neat book that I recommend, when parents try to "guilt you" into doing things.
Coping With Your Difficult Older Parent. There are some great "comeback" lines that I often use with my older, more difficult patients.
>On one hand, I feel responsible. I feel guilty. On the other hand,
The death of a loved one is usually accompanied by feelings of self-recrimination and endless musing about "What if I ...". Doctors feel it, nurses feel and caretakers feel it. Not to be dismissive, but it is a common sentiment. You sound like you did all you could.
There is a book called It's OK That You Are Not OK by Megan Devine that I recommend, if you have time. Sorry for your losses.
- a nurse
You want to get draw sheets.
These work because they're absorbent and waterproof on the bottom. Position it under the hip area where the leaks will occur. The tuck tails mean that the pad will not be moved away when the person is sleeping or turning over. Best fit is when you get the type that tucks around the mattress - they will save many bed changes.
Here's a link:
Bedside commode chair next to the bed she only pivots on and makes it easier on you.
https://www.amazon.com/Drive-Medical-Folding-Bedside-Commode/dp/B001HP7AQE/
It is truly a game changer. I have one in the bedroom and one in her sitting room. No rush to a bathroom or fear of falling.
I got this chair for my mother to help in the shower. She was able to sit down outside of the tub to undress, the chair swiveled to turn in the shower, and we slid her over. I was really nice, as she couldn't really scoot herself over. It's pricey, but well worth it.
https://www.amazon.com/gp/product/B07CNGGV5T/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
As people age, they often experience a cognitive decline which often manifests itself in infantile outbursts, forgetfulness and the lack of social filters.
I recommend a book called Coping With Your Difficult Older Parent. It has some good tips.
I used to beg the doctors to please keep him longer in the hospital because the peace at home felt so wonderful. Not proud, but just saying.
​
Oh man! This brings back memories from the two years I was my late-husband's caregiver. Sometimes, it felt that I was the only one with an oar in the water when it came to his care. Check out my book: https://www.amazon.com/CAREGIVERS-ARE-MAD-AS-HELL-ebook/dp/B0B6L9RM2C/ref=cm_cr_arp_d_bdcrb_top?ie=UTF8
Keeping all the balls in the air is a juggling act that few of us can maintain for very long. What did I do to keep myself from going off on people -- esp the well-meaning friends who offer to help but always with conditions? I wrote a book and raged. It was just published and is the #1 new book in elder care. It's a quick read and has great reviews -- and it was written precisely for frustrated and angry caregivers. https://www.amazon.com/CAREGIVERS-ARE-MAD-AS-HELL-ebook/dp/B0B6L9RM2C/ref=cm\_cr\_arp\_d\_bdcrb\_top?ie=UTF8
I am so sorry. Do understand that at some point, all our caregiving will come to an end and then we seemed to be set adrift in a pointless universe.
I am going to spare you the usual, trite advice and recommend a book that I like. It's Okay That You Are Not Okay by Megan Devine.
Yes, it's how I was able to stay sane. Having the ability to do my own thing while she was sleeping etc and to hear her if she yelled for help, fell down, etc. We just used a relatively basic one from Amazon. If you get the one with two parent units, you can put one in the upper level and one in the basement, and not be concerned about carrying the same one with you up and down the stairs.
You’d probably have to use a longer water line than normal, but if the commode uses a regular toilet seat-ring, the bidet normally gets screwed in between the seat and the toilet, so it should be fine. This is the one I’ve bought before, it doesn’t have heated water, but it’s very easy to install and usehttps://www.amazon.com/Luxe-Bidet-Neo-110-Non-Electric/dp/B009ZLRSJ6/ref=sxts_rp_s_a_1_0?content-id=amzn1.sym.9cb06d61-cbae-4109-9d1e-14578fae3d41%3Aamzn1.sym.9cb06d61-cbae-4109-9d1e-14578fae3d41&crid=GWL7PWF4DDTU&cv_ct_cx=luxe+bidet+110&keywords=luxe+bidet+110&pd_rd_i=B009ZLRSJ6&pd_rd_r=042a2e21-8a9e-4085-9930-a38ea903c214&pd_rd_w=sA9cf&pd_rd_wg=dd0oh&pf_rd_p=9cb06d61-cbae-4109-9d1e-14578fae3d41&pf_rd_r=JSGXZDQ3E6Z3TYP860Q9&psc=1&qid=1656801100&sprefix=luxe+bidet+110%2Caps%2C157&sr=1-1-ea136695-3596-4534-80e7-1570345d02b9
Please get this book. It's the #1 rated book by doctors for depression. You can listen on YouTube or get it for free at your local library.
Keep the windows open for a few days. There is a product called OdoBan that I use for cleaning walls/floors and laundry. It does a pretty good job..
It's a little expensive, but it works when other products fail. They also make a room freshener which I have not used - yet.
Understandable.
Please check out the book "Feeling Good" by Dr. David Burns. It's the #1 rated self-help book for depression by doctors. You can probably get it for free at your local library.
In the meantime, talk to yourself like you'd talk to your best friend in a similar situation.
This book is a classic. You can probably get it for free at your local library.
Hi I’m an Engineering student from Australia. A few friends and I are hoping to work on a side project to assist people living with dementia and their caregivers through a technological solution. Right now we’re hoping to understand more about the experiences of caregivers, and would appreciate if you could fill in this short 3-5 minute survey to help our understanding. Thank you so much in advance.
https://airtable.com/shrT4l2T9wikoscu2
Wire/screw a power extension cord to his bedside table and use things like these cable holders to keep cables firmly within reach.
A quick check through your posting history hasn't said what his medical issue(s) are. If incontinence is a concern, get multiple sets of cheap sheets and waterproof mattress protectors, then make up the bed with multiple layers of sheet protector/fitted sheet. If there's an incident, you can get him off the bed onto the commode or into the shower, then quickly strip down the top layer and have a fresh bed to move him back into once he's cleaned up. Bundling it up by bringing in the corners and folding it over the middle also protects your floors/carpets. when my godmother was on hospice (stage 4 bone cancer) this sandwich trick went a long way to help her stay clean and comfortable.
second note on sheets- flannel sheets are hella comfortable and easy on skin, and get softer with each wash.
Medical records has medications reminder feature but I don't think that remote notification control is available. Besides, there ary many other great features within the app (Lab tests, Medical appointment...)
A gait belt with handles was a godsend for me, for the 2 years that my mother (165 lbs) was relatively incapacitated .
Maybe one of these clocks that says Morning, Afternoon, Night rather than AM or PM. (not an official product endorsement just an example of what to search)
I use this motion sensorref_=ast_sto_dp) positioned to go off if she moves around enough. We also have weight sensor pads you place one the mattress and on the floor. The same company also makes pull-string alarms that work like a treadmill safety clip and call buttons. I have a camera that I monitor in my phone overnight but if you use the bed exit alarm it’s not so necessary.
This is what I’m leaning towards.
We actually like the stand alone rails the best but if anyone has any experience with either we’d like to know how sturdy they are.
We got this bedside commode but I will admit I have a second one in the living room to make things easier.
https://www.amazon.com/Drive-Medical-Folding-Bedside-Commode/dp/B001HP7AQE
Now we have the handicap toilets that are higher and you can get one for $99 at Home Depot or Lowes than you need someone to put it in. If you don’t want to go through that you can get a riser with rails. Something like this.
https://www.amazon.com/RMS-Raised-Toilet-Seat-Adjustable/dp/B0889KQVPW
It’s basically figuring out what works for you and your budget.
I find protein shakes a good compromise for when I don't feel like eating but know my blood sugar's gonna tank if I don't have something (lactose/gluten intolerant T2 diabetic)
I use Orgain's chocolate powder with oatmilk + ice cubes, with a tsp or so of orange-flavored psyllium (think Metamucil) - makes a nice creamy, cold chocolate/orange shake I can drink down slowly without thinking about it too much. There's premixed versions of the Orgain stuff as well but they're all milk-based, and I don't need that much bathroom time, sorry.
The biggest thing is- what foods do you *really* enjoy, and how can you make them easy/more convenient? Having foods you really love makes eating more a pleasure. For me it's pho; there's a few places near us that will deliver, and I make an event out of it if I can. Others are things like corned beef hash- I can meal prep that easily, and have a handful of pre-made frozen pans ready to go to pop in the toaster oven to crisp up when I'm mentally fried.
My BIL does the same, but he actually believes that he took his meds. We have to check morning and night to be sure. If his alarm goes off and he's distracted, he might go to his room, but then will forget why he went there. We have him show us the meds and we watch him take them. I don't know of any app that allows someone else to do something on another person's phone. The only similar thing I know of is a parental control app. If he lives alone, you may need a nurse to come in when he's supposed to take his meds. Or have a family member visit him several times a day. One thing we got was a pill organizer. It has AM/PM and we keep the pill bottles so he can't take too many. He's been known to double his meds because he never knows what day, year or month it is. They have something for pill bottles that locks the bottle until it's time to take it. It's like a time released bottle.
You have been given good advice. I have slept in the same room as the patient, but in a recliner chair. In assisted living facilities, we call this a "sitter" arrangement.
There are Call Buttons from Amazon that can alert you. Mom, just presses the button.
I would also recommend a bedside commode which you can place next to her bed. This reduces the amount of walking that needs to be done at night. She gets up, goes and then lays back down.
I bought a table-top safe: https://www.amazon.com/gp/product/B078K4W8N9/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Aside from the potential for overuse, we have various helpers in the house and some of these drugs have street value (such as oxycodone).
I don't know what to suggest about getting him the help he needs for the long term. But short term you could get this so he can get up off the floor more easily. It's a bathtub lift chair but I use it with my mom when she falls. She just scoots over onto the chair and we push the button to lift her up.
Drive Medical 477150312 Whisper Handicap Lift Chair, Blue https://www.amazon.com/dp/B00ABOHTK4/ref=cm_sw_r_apan_glt_i_2PSAS2MWH669RGR2P523
I don't know what to suggest about getting him the help he needs for the long term. But short term you could get this so he can get up off the floor more easily. ResQUp Self-Help Senior Lift | Get Up from Floor | Lightweight Strong Portable Easy to Use and Store | No Assembly No Slings No Pumping (Safari) https://www.amazon.com/dp/B071DK89V3/ref=cm_sw_r_apan_glt_i_KMW0RYTZJG967MPTSNBN?_encoding=UTF8&psc=1
I added a bed alarm, so when mom sits up it rings loudly in my room before she’s even upright. Maybe this could help too? alarm I purchased
These Caregiver Transmitters usually work. They are very popular.
>I never really thought I'd see her strip to naked and start yelling "help" in the hospital because she wanted ice cream.
Was a newly minted CNA once, working the night shift at an SNF (Skilled Nursing Facility) when out of the corner of my eye, I see 82 year old Bernice, making a beeline for the rear exit. She was as naked as the day she was born and was moving like a cheetah. I caught her right before she got out; the doors were actually locked,but I was out-of-breath. LOL!
The Reluctant Caregiver is a good,short read if you have time.
I haven't used an alarm like this but I know people who have and they say they're very helpful. It's basically a pad that goes under the sheets in the bed, with a sensor that triggers an alarm when it notices a weight has shifted from the pad. They're expensive, but I would recommend reading some reviews on Amazon to find one that might work for you (there are many different kinds). Best of luck to you. I know how difficult this is.
Smart Caregiver Wireless Bed Alarm System - Large Cordless Weight Sensing Bed Alarm Pad (20” x 30”) with Remote: https://www.amazon.com/dp/B07NSXC1VX/
There is a product called OdoBan which I use for everything that needs cleaning. I empty the "chamber pots" as often as I can and then add about 1/4 cup of OdoBan and leave it for the next round. Rinse and Repeat.
Fabuloso which you can buy at most Dollar Stores works well, but some people find the smell overwhelming. I also use OdoBan in the wash, you remove the "pee smell".
You can also try a dab of Metholatum (Vicks) under the nose. One of my nephews is a detective and that is what they use when they discover decomposing bodies. ; ( I have never done it.
I bought this one for my father:
https://www.amazon.com/gp/product/B0184P0UZ2/
It's more expensive than the basic one, but because the chair turns and shifts you don't have to worry about them getting skin tears from scooting along the bench. He was falling off his shower stool and I needed something sturdier. It's made my life so much easier.
There are shower benches. They overhand the tub so that a person can sit on the bench outside the shower and scoot over into the tub. This eliminates the falling hazard from trying to step into the tub, and from standing in the shower.
Your local medical supply store may have one, or you can order one online.
You have my condolences for your loss. I can't imagine the stress and heartache you feel during all of this.
If you can, get a waterproof cover for the couch- grab two (or three, depending on frequency of incidents) so that way when you have to wash one you can replace it with a clean one. there are a bunch of styles and colors. just as an example;
https://www.amazon.com/Easy-Going-Waterproof-Slipcover-Furniture-Protector/dp/B07J6QH37K?th=1
I'd hate for you to have to toss it, but I understand if the damage has already been done.
Does the manufacturer sell the cushions for replacement?
If there's stairs that you can't eliminate somehow, consider getting handrails on both sides of the stairs. Being able to hold both rails can help imbalance issues.
One low-profile option for nightlights are integrated lighten outlets- amazon example here. We have these all other the place now and they've done wonders to help my husband navigate in lower light.
I don't trust the cell phone with them. They drop it, lose it, can't figure it out, etc. I recommend something like a CaLToU Wireless Pager from Amazon. You can tie it to their bed or pin it on them. If I am night shift, then I am usually in the same room or in the next one.
I haven't used a purpose built device for this... In my case I have a home full of Google home/nest speakers, and i've set it up so Dad can just say "Hey Google, call nrfx" and it rings directly to me.
There are a few bits of kit that have fobs you could use that are dependant on a land line or cell phone, then there is this, which I just found just now, but know absolutely nothing about:
Wireless Caregiver Call Button System - Medical Alert System for Seniors & Elderly Care
It claims a 1000ft range, but those kind of measurements are usually by line of site, as in, it will have much less range the more walls it needs to go through.
This will be a tough time for you. So much of your life was tied up in being a caretaker. You are still a caretaker, but now you have to take care of yourself. I won't lie as it won't be easy.
I recommend reading It's OK That You're Not OK by Megan Devine.
> We have to fight with him on all sorts of things trying to get him to not do things that are unsafe
keep a journal of this. Time, date, event, I actually went on amazon and found a “temper tantrum logbook” which gives you a prompts to write down: pre-tantrum warning signs (checkboxes of possible triggers like hunger, etc), what caused it, what did i do, what worked? what didn’t work? It’s actually meant for parents of toddlers but it works for dementia. the idea is to keep a record and also notice any patterns for what triggers the events, what strategies work and don’t work LINK: Temper Tantrum Logbook: Record Meltdowns, Recognize Behavior Patterns and Reduce Tears
My team and I are currently in the process of designing and creating a mobile application to assist young carers in the Merseyside area.
It would be a huge help if anyone could fill out the following survey to help guide us in what features people find useful.
It would be doubly great if you are a young carer yourself and can give feedback, but all feedback is welcome.
Survey:
https://forms.office.com/r/p648H6z9fS
Thanks.
I totally understand what you mean about letting go. I was in a band that was doing marginally well around my city and selling out shows but it was just too much for me so I had to quit. It was probably the hardest thing I've ever had to do, and I feel both relieved and sad about it.
The things she's saying to you, I don't think are necessarily to you, they're more AT you because she sees you with your abilities and your life and she's depressed and sad that she can't do the things you're doing. And you're just the guy who's there to take it, you know? It sucks. And I'm sorry.
I posted about the podcast idea In this subreddit. It's by a caregiver for caregivers to talk about their experience and journey. Tell their story and get things out of it, hopefully helping others. It begins hitting all platforms on August 15th, but here's a secret link to episode three if you want to hear it and have an idea.
Does he have one of these?
2 Pc 32 Ounce Deluxe Male Urinal Glow in the Dark Incontinence Pee Bottle https://www.amazon.com/dp/B00CYSHWNY/ref=cm_sw_r_awdo_navT_a_QP0RQXVZ778RKQ44H0T0
I’m sure you can buy one at Walmart or any pharmacy. Even if he sits up to use it, as long as he doesn’t scoot himself to the edge of the bed it should improve the situation.
Hugs and prayers.
I am happy that your kids are happy. The loss of innocence is irreversible.
You might be interested in this book, when you have the time: It's OK That You Are Not OK by Megan Devine. I found it to be excellent.
You might look at getting her something similar to this to help support her back. Also heating pads and other support pillows are life savers. Pillows between the knees, to relieve pressure on the back. I have a compressed disc in my low back that I’ve been dealing with for years. I wish you both the best of luck
if you go on amazon, there are a number of daily health logbooks, you can search through to find one that suits your needs. search for terms like “caregiver daily logbook/journal”. Try to find some with reviews that have a picture of the templates inside to make sure it has the prompts you need. you may have to purchase a couple and be willing to return.
Definitely i would get a weekly pill box with 2 or 3 slots daily (actually, multiple of these, so you can fill them all at once when you get the new bottles) so that you don’t have to track so much. Here is a little med tracker you can have aides do, to slide the button when the meds are complete that day
i find this book really helpful for doctors appointments. there are a few info pages at the front but most of the pages are for Ailments and Office visits, so you can track what doctors said (and prep for future appointments, what you want to ask about), and also how long complaints have lasted.
Carousel Sliding Transfer Bench with Swivel Seat. Premium PADDED Bath and Shower Chair with Pivoting Arms. Space Saving Design for Tubs and Shower. https://www.amazon.com/dp/B0184P0UZ2/ref=cm_sw_r_cp_api_glt_fabc_VZR442F8XA8X4QB1CDTK?_encoding=UTF8&psc=1
This shower chair 👌🏼
My mother uses diapers and an insert. The diapers are paid by her insurance but the inserts are from Amazon. Here are the inserts. The inserts hold a lot. There are different absorption levels.
Frustration is absolutely normal! And of course you feel that way. Your life is getting sidelined and your mental health is declining and she won’t even quit smoking. The truth is that for all of your best intentions, YOU DO NOT CONTROL her, and if she wants to kill herself one cigarette at a time then you can’t stop her. Let good that responsibility!
For the morning toilet issue:
I am so sorry. Yes, it will feel very strange for awhile, I recommend a book called "Its Ok That You're Not OK". Its excellent.
Amazon has a number of different call lights as they are referred to in a skilled nursing facility. I have also seen Life Alerts and inhouse cameras installed so yu can keep an eye on your patients.
This might be something that you might use. They are very popular as long as you are close by.: https://www.amazon.com/CallToU-Caregiver-Transmitters-Receivers-Attention/dp/B077SYPD5K/ref=sr\_1\_2\_sspa?crid=2GQ5APT39T5HV&keywords=caregiver+call+button+for+elderly&qid=1639080088&sprefix=caregiver+call%2Caps%2C361&sr=8-2-spons...
If you search for “toilet tissue aides” on Amazon several wands will come up that are very affordable. They would extend her reach so she can handle her business herself. But from the limited info I read, it looks like the limit is on pushing, pulling, and lifting. Not sure if that would have an impact on her bathing habits, but the link below is for an affordable shower chair if she can’t stand for an extended period of time.
I’m gonna be honest, this stuff stinks. But if you are battling buildup this a a great and affordable way to go. I usually use it first, then do a light shampoo on my scalp to get rid of the smell. Condition the ends.
- Short hair is almost a requirement for the physically challenged.
- They have rinseless shampoo caps which are wonderful but someone expensive.
- Also portable shampoo basins.
- There are some therapeutic shampoos like T-Gel that you might try.
oh yeah, 2nd the grabbers. Just don't get the pistol-grip style with suction cups...I find those useless. Get the full handgrip style, they're indispensable. I have one in every room too!
Also thanks for the tip on the incontinence pads. I'm visiting my Dad in the hospital today...gonna bring a bag with me! ;-)
We use one of these to help prevent bedsores. We keep it on the low setting to get the right balance between firmness and comfort.
https://www.amazon.com/gp/product/B00TZ73MUY/ref=ppx_od_dt_b_asin_title_s00?ie=UTF8&psc=1
Hi there! We're a team of students working in a SCAD-sponsored (Savannah College of Art and Design) research course to find and eliminate problems in the current social care systems. By filling out this survey, you are helping us gain powerful insight to steer this project. Responses will be anonymized. Thank you in advance for your efforts!
Do you provide care to someone else on a daily basis? Are you located in Chicago and would be interested in earning some extra cash for participating in a research study to evaluate medical devices?
I am a Human Factors Specialist at a human factors engineering consultancy, where we conduct medical device usability research (e.g., simulated use studies). We conduct research on behalf of our clients to understand how well a medical device's design meets the needs of its intended users, with a specific focus on ensuring products are designed to be both safe and effective.
Right now, my team is conducting a usability test of an injection device used to treat skin conditions. But we need your help! We are currently seeking individuals who are caregivers to participate in our 60 minute usability study located in the Downtown Chicago (COVID restrictions enforced).
If you are interested to participate, please complete this form and we will get back to you if we think you might qualify: https://forms.office.com/Pages/ResponsePage.aspx?id=VFkRcM0M8EWHvQOyo1h1aV1NOEAMc6dItN1eygkGSSVUMFJTTVY3RzUwODJWVjFVWDA4MVBXN01QRy4u
Hey there.
I founded /r/intimacyofcaring a couple months back, and it hasnt taken off yet (although I should probably advertise/push it a bit... its on my "to do" list anyway)
I'm a caregiver through the VA and there are some things that I get ahold of that can help all of us.
This is a pamphlet called Chronic Pain and Sexuality, given to my wife from the SF Veterans Hospital's pain clinic. Take a look at it, let me know what you think.
And it is absolutely not selfish to need physical comfort from your partner. There are times my wife is in "no touch" mode since any sort of physical contact is painful. Its rough, and I understand that.
Anyway, take a look at the doc, take a look at the sub, and I hope you come back again!
You did everything right. Sepsis kills more people than prostate and breast cancer combined. In an older person, even if they survive Sepsis, it sharply curtails their remaining years and quality of life.
You are in the beginning stages of grief and anger, self-condemnation and fear are all very much a part of the grieving loss.
I recommend It's OK That You're Not OK by Megan Devine. Sorry for your loss. Take things one day at a time for the next few months.
I haven’t used the bed sheet type you mention but we use different pads for daytime and night time. For daytime we use these reusable and washable pads
2 pack - Underpad - Reusable, Machine Wash & Dry, Waterproof, Extra-absorbent for Adults and Children (34" x 38",Blue) https://smile.amazon.com/dp/B072MG5VKD/ref=cm_sw_r_cp_api_glt_fabc_3786DZT0JTP46TR82J1E?_encoding=UTF8&psc=1
And for nighttime we use these
Medline - MSC303625 Extrasorbs Drypad Underpads Air Permeable 30 x 36 inches (Pack of 25) https://smile.amazon.com/dp/B07GYZNDY8/ref=cm_sw_r_cp_api_glt_fabc_CHDZG85S5T76JPFCNDHY?_encoding=UTF8&psc=1
They both work great to keep urine off the mattress and bedding.
>Seriously though, COLD WATER for poop and blood. Hot water only after the smell and stain is gone.
Yup! I also recommend a product called OdoBan. I have added it to the wash, cleaned walls with it and floors.
Thanks! I didn't know the terminology for these, or the large variety of styles.
I think these might work better than my current approach for my Dad (waterproof underpaid, towel on it, then fitted plain sheet on top of that).
I strongly recommend buying this book and working together to fill out the questionnaires before going to social security. It will make the appt less stressful, and will vastly improve the odds of ss disability https://www.amazon.com/gp/product/1878140000/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1. The bottom line is to carefully document what her daily functioning is like. Many people work with endometriosis. You have to demonstrate why any job (even a remote job lying in bed) is impossible at her current functional level.
Stack multiple doctors appointments on the same day, as much as possible.
Does your family live in the area? You need to have a meeting about what they can do to help to spread some of this around. It could be managing some paperwork or researching programs on their behalf. It could be driving them to/from the local municipal Adult Day Program once a week each, so that you have solid time for work, and so your work/errand schedule isn't so choppy. If they can take grandma on little field trips or like just going out for ice cream or to the salon. That way you have a couple hours to focus on your work.
You can take turns bringing her to appointments. On amazon you can get a logbook for doctors appointments (this is the one we got) where you can take notes on what the doctor says and necessary changes. And so you can bring up what other specialists said previously, to different doctors. Then hand it to the next person at the next appointment. So that everyone can literally be on the same page.
side note: how do you get into purchasing as a job? I have been managing the renovations for my family member's home, and I realized I am very good at researching various materials and what is good at each purpose, to pick the best products for the remodel. Most recently a disability-accessible bathroom. Like I'm really good at shopping and finding products so it functions well, and is safe for the resident, and easy to clean, and of course stylish. How do you make that a career?
My dad has had Parkinson’s for a few decades, diagnosed a few years after M. J. Fox and had never had a regime like that…
Both he and my wife though, use the blue daily trays with 4 slots. Easier to carry around than the hole thing. My wife takes meds at specific times and we work in an extra pill into those slots to make sure they’re not forgotten.
Good luck though. With that regimen somethings gotta give.
Edit: I’m talking about something like this: https://smile.amazon.com/Motech-Resistant-Supplements-Prescription-Medication/dp/B07BS8YMKP/
We use the baby blue/solid color version due to light sensitive meds.
I work in a private residence with 3 folks who are all Intellectually delayed. We use the following button. Its a large house and garden and the buttons reach the alarm box all over. The boxes are small and battery operated. The batteries last a long time-ive worked here over a year and only changed them once, and my clients use the buttons multiple times a day. The buttons can be attached to a lanyard, and there are several chimes to choose from. The button and the box both light up when the button is pushed, so your person knows it worked. These are loud, but effective. Good luck!