McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 11:40:22 GMT -6
Anyone know of things that really help with bed wetting? To help keep it dry. We got him men's depends. Do I need overnights? He's cold all the time, do you think an electric blanket will help? We have a space heater near him. He's keeps a Hoodie on and winter hat. We put disposable bed pads under the sheet with another sheet over top to make changing the sheets easy. Later we just put the pads over the sheets. We also got a bedside commode when it became more difficult for him to get to the bathroom. I would be hesitant to use an electric blanket if he's not regulating his body temp. He could end up with burns. I thought maybe a heating blanket on top of a regular one. He's cold cause of low iron.
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sullivan
Platinum
Posts: 1,887 Likes: 7,295
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Post by sullivan on Apr 11, 2021 11:41:51 GMT -6
I’m sorry, McBenny. It’s hard enough to share a space with a friend that you don’t have to actually care for, but this on top of that situation is a lot. Something else that might help on the bed is a twin waterproof sleep anywhere pad from Target. It’s the same idea as the puppy pad but softer and washable. It might be more comfortable for him, and a couple layers of sheets/waterproof stuff helps for changes like TheoV2 said. I have a friend who does local nursing home placement consultations. Her services are paid for by the facilities, and not individuals/families. I wonder if you have someone similar near you that might give you some assistance.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 11:42:38 GMT -6
I’m so sorry McBenny. I’m sure this adds so much to your already overflowing plate. Puppy pads, beanie hats, hot water bottles. Where is he, physically, in the house? Grumpiness is absolutely normal, I imagine it comes from the sense of loss of control over life. What can we do to help? Can you set up an amazon wish list? we have him in our family room. We put mattresses on bricks so not too high or too low for him to get up and out.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 11:44:08 GMT -6
The grumpiness is absolutely natural, but with terminal diagnosis, depression and anxiety can go hand and hand and come out as anger. He might benefit (once he gets into a doctor) from some medication for this and/or virtual meeting with a psychiatrist if that is feasible and he's agreeable. I went through his meds and found an anti anxiety one has been prescribed. He says he benefits from it.
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sullivan
Platinum
Posts: 1,887 Likes: 7,295
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Post by sullivan on Apr 11, 2021 11:44:26 GMT -6
There are things called perfectly safe body heat activated bed warmers (same concept at space blankets I guess) that only increase 10 degrees and don’t use electricity. Might be another good option to avoid any safety issues with electric blankets.
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Post by sweptaway on Apr 11, 2021 11:47:01 GMT -6
I don't have any better advice than you've already gotten but I want to voice my support. This is an unthinkably difficult situation for you and your family.
I will send you whatever you need. Cash, food, supplies, you name it we'll send it.
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Post by kittyriot on Apr 11, 2021 12:17:03 GMT -6
I just wanted to say you are loved and we are here for you. I too, have nothing better than what all the amazing women here have shared.
I’ll be praying for all of you. I’m so very sorry you’ve had to shoulder this burden so unexpectedly.
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mathrun
Gold
Posts: 648 Likes: 2,543
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Post by mathrun on Apr 11, 2021 12:26:44 GMT -6
I’m so sorry.
Definitely figure out what hospice benefits he qualifies for. When my dad was terminal, they sent a hospice nurse a couple times a week. She checked on him but also us. She had so many great resources like counseling and grief groups for my mom and my 16 yo brother, Info about the meds he was on and what behavior/feelings to expect, even free or cheap rental on a hospital bed and shower/toilet equipment. They really are amazing. Every week she helped us figure out what we needed and how to get it.
It’s been over 10 years but when my dad was ill he was eligible for disability payments without the waiting period once a doctor certified he was terminal. It took a few months to get payments started but they sent a lump sum back to the effective date from the doctor’s certification.
Be gentle with yourself. This is a ton of work and emotional weight. Figure out what you need each week to recharge (time away, regular exercise, time with friends, whatever) and make that a priority. If you and YH don’t take care of yourselves you won’t be able to take care of BIL.
When friends and family ask what they can do, take them up on the offer. Maybe someone could help with some of his food requests? We spent like three days scouring grocery stores looking for a weird ice cream treat my dad mentioned sounded good to him. Then my neighbor ended up knowing exactly where to find it and had them delivered to us.
Finally remember you are doing a great job and it is enough. It’s easy to feel overwhelmed or like you aren’t doing enough to make this time as comfortable as you can for the patient. Trust that you are. BIL is lucky to have you and his brother. Even if he doesn’t say or show it, he’s grateful and so much better off because of you.
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adelbert
Amethyst
Posts: 6,990 Likes: 40,163
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Post by adelbert on Apr 11, 2021 12:34:16 GMT -6
I'm so sorry. You're doing so much and I'm sure he appreciates everything you're doing for him right now. I hope he can move into a facility soon and that you're getting some time for yourself too. I'm thinking of you and your family.
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jnetx
Amethyst
Posts: 5,774 Likes: 12,965
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Post by jnetx on Apr 11, 2021 12:44:16 GMT -6
I'm so sorry you're going through this. I will second the washable chux pads. I used them when my then 5 year old was still having accidents. Figuring out the placement was tricky at first but once we got that right, it's so easy to pull one off and pop another one on.
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brux
Diamond
Posts: 35,312 Likes: 282,265
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Post by brux on Apr 11, 2021 12:47:53 GMT -6
Love and support to you McBenny. This is a whole lot of problem to be dropped into your laps. Please ask for help from friends and on the board. We want to help however we can.
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Eagles
Opal
Posts: 8,360 Likes: 42,899
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Post by Eagles on Apr 11, 2021 12:53:12 GMT -6
You've gotten a lot of good advice, so I just wanted to add love and good thoughts. I would gladly contribute to a wishlist or Venmo. ❤️
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zoeylucy
Amethyst
Posts: 7,160 Likes: 26,478
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Post by zoeylucy on Apr 11, 2021 13:04:16 GMT -6
Sending love and hugs to you and your family. You are an amazing and selfless person, and I’m wondering if there’s anything we can do to help support you and your H? Is there anything we can send you to bring you comfort?
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sudsy
Opal
Posts: 9,009 Likes: 50,557
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Post by sudsy on Apr 11, 2021 13:27:09 GMT -6
These girls have already offered any advice I’d give. Be kind to yourself and know it’s ok to step away for a little bit to recharge. Caretaking is draining. You are strong, and you’ve got this.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 13:30:02 GMT -6
I’m sorry, McBenny. It’s hard enough to share a space with a friend that you don’t have to actually care for, but this on top of that situation is a lot. Something else that might help on the bed is a twin waterproof sleep anywhere pad from Target. It’s the same idea as the puppy pad but softer and washable. It might be more comfortable for him, and a couple layers of sheets/waterproof stuff helps for changes like TheoV2 said. I have a friend who does local nursing home placement consultations. Her services are paid for by the facilities, and not individuals/families. I wonder if you have someone similar near you that might give you some assistance. can you share a link of what you're talking about this sounds good
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 13:31:53 GMT -6
I have no further advice, but please be assured of my family’s prayers for you, him, and the rest of your family. Your BIL is lucky to be with you and your H. girl I need the prayers. I feel so lost. We both feel no one should die alone. But I feel I'm messing this all up. I'm frazzled.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 13:37:07 GMT -6
Ok so I made a list of things to look into here and resources as well. Thank you all. It's been 2 weeks and today I'm just very emotional about it all. It's a heavy weight on me. I guess I don't want to mess this up. If that makes sense. I want him to be comfortable and I'm stressed we can't make him be.
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STP
Diamond
Posts: 43,332 Likes: 314,803
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Post by STP on Apr 11, 2021 13:40:41 GMT -6
Oh friend, you’ve been doing this for two weeks already? It’s so much. Are you getting any breaks?
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 13:45:01 GMT -6
Oh friend, you’ve been doing this for two weeks already? It’s so much. Are you getting any breaks? I don't usually do anything physically for him. Husband washes all the things and helps him in the bathroom. His medication gives him diarrhea as well so it's a lot. I'm emotional support but I'm a planner and I think I broke down today, I don't know.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 13:48:24 GMT -6
I help wash but MH doesn't want me to. He does all his washing. It's a lot of washing.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 13:49:41 GMT -6
Oh friend, you’ve been doing this for two weeks already? It’s so much. Are you getting any breaks? he's been here since March 28 and we got a break when he was in the hospital
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klw
Opal
Posts: 8,727 Likes: 21,480
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Post by klw on Apr 11, 2021 14:05:36 GMT -6
When my cousin was on hospice, he always wore a hat and warm socks. They also kept fuzzy mittens nearby in case his hands were cold. I hope that you will be able to get it figured out for outside help for him. Praying for you all.
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Cher
Global Moderator
BMB, GD, Special Interests
Posts: 57,455 Likes: 442,214
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Post by Cher on Apr 11, 2021 14:07:20 GMT -6
I'm so sorry. This is so much for you to take on. But, truthfully, I could not think of a better person to care for your BIL during this time. I will keep thinking positive thoughts for all of you.
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baymare
Bronze
Posts: 152 Likes: 378
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Post by baymare on Apr 11, 2021 14:17:40 GMT -6
Oh this is so hard. I am sorry.
For chills - do you have a dryer? Just putting a blanket in the dryer for 5-10 minutes will warm it up quite a bit and help him feel warmer for awhile. You could have a couple blankets that you switch out.
Even if he doesn't qualify for hospice, he should see someone from palliative care - they can help with lots of quality of life issues.
Keep bleach on hand for cleaning the bathroom if diarrhea is a problem. C diff is a risk, and regular Lysol or Clorox wipes won't kill it.
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hawkward
Global Moderator
Loss, Infertility
Posts: 19,637 Likes: 123,085
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Post by hawkward on Apr 11, 2021 14:18:52 GMT -6
Ok so I made a list of things to look into here and resources as well. Thank you all. It's been 2 weeks and today I'm just very emotional about it all. It's a heavy weight on me. I guess I don't want to mess this up. If that makes sense. I want him to be comfortable and I'm stressed we can't make him be. It makes complete sense. Everyone wants their loved ones (any human really) to have a good death and to feel responsible for that is a lot. But I know that you will get through this because you are strong and smart and capable. And you have a whole big group of us that are happy to crowdsource ideas and sympathy or a kick in the ass when needed. You said he doesn’t have a PCP. Does he have access to pain control? That will help agitation and help you and YH get him more comfortable.
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McBenny
Unicorn
#sickomode
Posts: 52,182 Likes: 296,671
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Post by McBenny on Apr 11, 2021 14:45:24 GMT -6
Can someone that suggested the light blankets from layering suggest one? Like a link so I know what kind you mean.
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tookie
Sapphire
Posts: 4,045 Likes: 25,661
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Post by tookie on Apr 11, 2021 14:46:53 GMT -6
I’m so sorry McBenny. It’s a lot, and you are a great person. Take the time and space you need to take care of yourself.
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kayc
Sapphire
Posts: 4,462 Likes: 12,449
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Post by kayc on Apr 11, 2021 14:58:31 GMT -6
I’m sorry McBenny. I took care of my mom on hospice last summer and the advice you’re being given is super helpful. For pain and staying warm, we couldn’t use a heating pad or electric blanket with my mom because she didn’t move much and she overheated and was a burn risk. We used something similar to this instead and she found it helpful Relief Expert Extra Large Microwavable Heating Pad Microwave for Full Back, Neck, Shoulders, Cramps, Leg, Arm Pain Relief with Moist Heat Cold Therapy Wrap, Hands Free - 13"x24" smile.amazon.com/dp/B0887XH8LP/ref=cm_sw_r_cp_api_glt_fabc_RD4RFE6SMJD0FB0SCK08?_encoding=UTF8&psc=1Also, definitely find out about getting him on hospice. They brought us an adjustable hospital bed, wheelchair, etc. They’ll also do pain meds and everything was delivered to us. For blanket layering, we did a top sheet, then just layered thin fleece blankets over her. Nothing special, just cozy fleece blankets like this- DAKANG Plush Throw Blanket, Fleece Throw for Couch 50" x 60" - Soft Microfiber Cozy Lightweight Printed All Season Bed Throw Blanket, Polka Dot Grey smile.amazon.com/dp/B08747K2F6/ref=cm_sw_r_cp_api_glt_fabc_SQNPQ3XS1W5T0813R250We just gathered ones she already had, piled them on u til she was comfy, then she’d throw them off if she got too warm. In terms of bed/bathroom messes, hospice gave us a bedside commode. That was a lot easier for her to get on and off. We also used the absorbent pads plus depends. It’s so hard. I’m thinking of you all. ETA: commode like this Drive Medical 11148-1 Steel Folding Bedside Commode, Grey, Bariatric smile.amazon.com/dp/B001HP7AQE/ref=cm_sw_r_cp_api_glt_fabc_20AV5P45HV15AHDV0WN6I put a plastic shopping bag in the bucket so after she used it I could just tie up bag and toss it, then wipe bowl and put new bag.
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Post by AnnPerkins on Apr 11, 2021 16:11:33 GMT -6
Dying is hell for everyone involved. I'm so sorry you all are going through this. Be angry, be sad, feel all your big feelings and please don't hesitate to share them. You and your husband are performing miracles ever day, even if it doesn't feel like it.
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food
Silver
Posts: 316 Likes: 728
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Post by food on Apr 11, 2021 16:14:09 GMT -6
I don’t know if this will ease your mind on your BIL not dying alone, but a lot of times with terminal illness medical providers can tell when passing is imminent. While there are obviously no guarantees, if he was in a nursing home they could call you and let you know to come be with him when they feel the time is coming.
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