McBenny
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Post by McBenny on Apr 11, 2021 9:19:18 GMT -6
My BIL is dying. He's not close enough to death for hospice care.
He was recently hospitalized and when he got out his girlfriend told him not to come home.
He's here now. He needs help doing things. Some days are good and some days are not. We are working on placement in nursing home.
I have questions. I wasn't prepared for the emotional weight. I burst out crying sometimes.
He doesn't want to be a burden. I don't want him to feel like that either. It's a lot though.
He sometimes needs help to get into the bathroom. To shower. He's cold all the time. He's grouchy sometimes. Is it pain? Is it all the medicine?
Has anyone been through this? I don't know what else MH and I can do?
I don't know what I'm looking for here. We have already had to bring him to the hospital since he's been here.
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jsgrl
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Post by jsgrl on Apr 11, 2021 9:24:54 GMT -6
Oh that's so hard and awful, McBenny. I don't have a lot of advice. Is there any way you can have a home health person come in some? Patience and kindness, especially with yourself is important though. I know you're good at taking care of others, but make sure you take care of yourself, too.
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McBenny
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Post by McBenny on Apr 11, 2021 9:25:03 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.
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jaygee
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Post by jaygee on Apr 11, 2021 9:25:07 GMT -6
I’m so sorry. That’s a lot to take on so suddenly.
I don’t have any advice or experience because any time I’ve been through this it was with hospice. Is it possible to access some home health services? Was he discharged with any? That seems like it would take a real load off if you could get someone in to help with some physical needs that he has that are hard to handle.
Do you need supplies (heating pads, blankets, etc)? Can you put together a quick Amazon list and circulate it?
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McBenny
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Post by McBenny on Apr 11, 2021 9:26:38 GMT -6
Oh that's so hard and awful, McBenny. I don't have a lot of advice. Is there any way you can have a home health person come in some? Patience and kindness, especially with yourself is important though. I know you're good at taking care of others, but make sure you take care of yourself, too. This is on the agenda to look into but MH doesn't want him here long term. He's fear is he dies here. How will the kids feel? Then he also feels it would fall on us to ship his body back to Louisiana and we don't have money for that.
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jsgrl
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Post by jsgrl on Apr 11, 2021 9:27:06 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. What about some hot water bottles tucked around him
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STP
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Post by STP on Apr 11, 2021 9:27:57 GMT -6
Oh my God, I'm so sorry.
Does he qualify for any assistance that might help get a nurse/aid in the home to help with those tasks?
The grouchy thing is really normal. He's angry that he's sick, that his life is ending this way, he feels guilty I'm sure for putting you all through this. That doesn't make it easier on you though.
There are the usual suggestions of support group and therapy for you, but right now you're adjusting and your feelings are perfectly understandable. If you need to cry, you need to cry. That's fair.
I don't think there is anything else you can do. You're doing more than a lot of people would, and you're an amazing person.
In the meantime, what can we do? He's cold, you said - would it help to send some electric blankets? Or can we help look into getting help for you guys in the home?
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McBenny
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Post by McBenny on Apr 11, 2021 9:28:11 GMT -6
I’m so sorry. That’s a lot to take on so suddenly. I don’t have any advice or experience because any time I’ve been through this it was with hospice. Is it possible to access some home health services? Was he discharged with any? That seems like it would take a real load off if you could get someone in to help with some physical needs that he has that are hard to handle. Do you need supplies (heating pads, blankets, etc)? Can you put together a quick Amazon list and circulate it? I can't find the cord to our heating pad. I don't know why I didn't think of getting another one. Thanks for that.
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jaygee
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Post by jaygee on Apr 11, 2021 9:28:30 GMT -6
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STP
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Post by STP on Apr 11, 2021 9:28:50 GMT -6
Yes, overnight depends, and then a really good mattress protector.
And I know how this sounds, I'm sorry - but the puppy training pads too.
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edubs
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Post by edubs on Apr 11, 2021 9:29:22 GMT -6
I am really sorry. You are a doer and a giver and always seem to be at ready to help people in need. It is hard not to take on too much when it is family. Is there any way that you can bring someone into the house, even for just a couple of hours a day for home support?
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Post by cabbagecabbage on Apr 11, 2021 9:30:10 GMT -6
I’m sending my best wishes for peace and pockets of goodness in your life. I don’t have helpful advice. My best friend lost her sister young to terminal illness and I wouldn’t wish that on any family.
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STP
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Post by STP on Apr 11, 2021 9:31:55 GMT -6
Also, you were already at your understandable wits end with your friend staying so long.
Your home hasn't been yours in so long.
I cannot imagine what that does to your mental health, and I'm so sorry.
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Sweetjane
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Post by Sweetjane on Apr 11, 2021 9:33:47 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. What about some hot water bottles tucked around him This is what I was thinking, or the buckwheat or bags of rice you heat in the microwave. Moist heat is better than dry heat anyway. I also would not use a heating pad if the bed is getting wet. I'm sorry, this is tough spot to be in. We've been there too.
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McBenny
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Post by McBenny on Apr 11, 2021 9:34:15 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. What about some hot water bottles tucked around him this is a great idea. I don't know why I didn't remember this.
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McBenny
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Post by McBenny on Apr 11, 2021 9:34:52 GMT -6
Yes, overnight depends, and then a really good mattress protector. And I know how this sounds, I'm sorry - but the puppy training pads too. we've been using this so far. He doesn't like to put them on the bed but has accepted he has to now.
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origami
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Post by origami on Apr 11, 2021 9:35:51 GMT -6
I'm so sorry mcbenny.
With my dad at this stage we used depends, a rubber sheet, and puppy pads that were changed as needed. Honestly the puppy pads worked great and led to less need to change the whole bed.
Electric blanket and/or weighted blanket. His anxiety got intense with the pain and I think a weighted blanket probably would have worked wonders to calm and warm him.
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Post by sarahbear on Apr 11, 2021 9:36:30 GMT -6
I'm so sorry you're going through this. I'm not sure if this applies, but wanted to mention that Hospice is a 6 month benefit. A doctor has to certify that it is their opinion that the patient may have 6 months or less to live. It's not just for the last few weeks or days. If your BIL might qualify I would encourage him to speak with his doctor again. There is a lot of help that he (and you all) can receive. Also, if perhaps, he outlasts that 6 months it can be extended again for another 6 months.
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Post by shamycooler on Apr 11, 2021 9:37:15 GMT -6
I don’t have any advice, but I’m so sorry and wanted to send you lots of love and positive vibes. You’re an amazing woman. If you do put together an Amazon list of needs, I’d love to contribute.
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Post by lucilleaustero on Apr 11, 2021 9:38:16 GMT -6
I am sorry. Nighttime diapers, a mattress protector, and disposable chucks are helpful. We also kept a portable male urinal on my dads nightstand. If possible, take mini shifts helping him, so each adult gets time to decompress. Definitely get a home health aide, possibly respite services. His diagnosis may qualify him for Medicaid, which has a nunber of services for terminal patients.
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origami
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Post by origami on Apr 11, 2021 9:39:18 GMT -6
Also, your local area agency on aging and disability might have financial resources for you or him and potentially for funeral expenses should you need to transport him to Louisiana.
Our local AAAD considers anyone taking care of a non immediate child or spouse to be a kinship caregiver and they have tons of resources for everything from his physical health to your mental health and everything im between. There is no age limit on the person or caretaker despite the agency name.
I realize in your line of work you may already know all that but sometimes if its not right in your face you can forget about it.
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Post by goldenbird on Apr 11, 2021 9:40:24 GMT -6
I don't have any advice but I wanted to say I'm so sorry. ❤
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Post by babybean on Apr 11, 2021 9:40:33 GMT -6
I’m so sorry you’re having to go through this. You’re an amazing human being. I agree with the overnight depends, electric blanket and everything else that’s been said.
Is the plan at this point to keep him with you until hospice becomes an option? Are there any services available for in home care assistance? Can we help with the financial aspect at all? I’m sure a lot of us would be more than happy to contribute what we could.
I’ll be keeping you and your family in my prayers.
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STP
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Post by STP on Apr 11, 2021 9:40:46 GMT -6
What about some hot water bottles tucked around him this is a great idea. I don't know why I didn't remember this. Because you can't think of everything, and your brain is absorbing so much right now. Please don't be so hard on yourself.
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McBenny
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Post by McBenny on Apr 11, 2021 9:41:29 GMT -6
I'm so sorry you're going through this. I'm not sure if this applies, but wanted to mention that Hospice is a 6 month benefit. A doctor has to certify that it is their opinion that the patient may have 6 months or less to live. It's not just for the last few weeks or days. If your BIL might qualify I would encourage him to speak with his doctor again. There is a lot of help that he (and you all) can receive. Also, if perhaps, he outlasts that 6 months it can be extended again for another 6 months. part of the problem is that mh and I are entering the picture late. We don't know where he's been or when. I'm working now on filling in holes of health treatment and who he's been to. I don't think he has a pcp. He was told there is nothing more they can do so I don't think he's been seeing anyone regularly since then. We need a go to doctor right now. I don't think he had that. I'm not sure.
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Post by Deleted on Apr 11, 2021 9:44:18 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. I'm sorry They sell bed pads that are either washable or disposable. Does he have ins or Medicaid? You could see about getting supplies through ins if he does. You may need a Dr order.
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McBenny
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Post by McBenny on Apr 11, 2021 9:45:08 GMT -6
Also, you were already at your understandable wits end with your friend staying so long. Your home hasn't been yours in so long. I cannot imagine what that does to your mental health, and I'm so sorry. girl my brain feels scrambled. Like I can't think. Her ass still here. But she says she found a place. Waiting to hear if she's approved. 🤞🏻
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hawkward
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Post by hawkward on Apr 11, 2021 9:46:18 GMT -6
I’m so sorry. The emotions are hard but normal. It’s so overwhelming to care for someone who is actively dying. You want him to have a good death but the physical realities of being a caregiver are also difficult.
Chux pads are available on Amazon and can make bedding changes easier. Feeling cold can sometimes be helped by gentle compression to encourage better circulation. Be careful with heating pads, etc., because he may burn more easily. Burns in home-cared hospice patients are unfortunately common.
Comfort bath wipes can be heated and are a good alternative to showering. They don’t need to be rinsed and are disposable for days he doesn’t have the energy to bathe or shower.
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McBenny
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Post by McBenny on Apr 11, 2021 9:48:42 GMT -6
It's a lot. It's like a child. Some days he doesn't eat. Some days he wants random things like corn dogs or tacos. I jump and make them or get them.
He loves baths now. MH helps him in and out of the tub. MH did a bubble bath for him and he loved it and laid back. He's so small and lost so much weight. He looks like he's in his 60s.
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Post by Deleted on Apr 11, 2021 9:49:16 GMT -6
Also, my dad was terminally ill and was extremely mean towards his loved ones when everything settled in. People dying will go through the stages of grief just like their loved ones so anger and rage and hatefulness is very normal. But it's difficult for the caregiver as well. I'm sorry.
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