STP
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Post by STP on Apr 11, 2021 9:49:53 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. 🤞🏻 OMG let me bribe them. Tell me who to call.
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McBenny
Unicorn
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Post by McBenny on Apr 11, 2021 9:52:39 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. right now MH is pursuing a placement somewhere. We've been trying to get the recent current records they need. I think MH is scared for him to die here. He was at my MIL house but she's disabled and just had surgery so MH went a got him. He was also arguing with her a lot. He does bicker with MH but listens to him more. MIL said they were like that sine little boys.
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Post by skategirl128 on Apr 11, 2021 9:53:06 GMT -6
I’m so sorry. Sending lots of love and hugs to you. That’s a very hard situation to navigate. I’ll be keeping all of you in my thoughts.
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teraiin
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Post by teraiin on Apr 11, 2021 9:55:38 GMT -6
My dad is going on 2 years into a terminal illness diagnosis and has been dropped from hospice. My brother is doing the caregiver thing and it is HARD so I’m so sorry you’re having to go through this As far as bed wetting/leakage we use these Medline - MSC282070LB Heavy Absorbency Underpads, 36" x 36" Quilted Fluff and Polymer Disposable Underpad, 50 Per Case, Great Protection as Bed Pads and Pee Pads www.amazon.com/dp/B002NHIFNW/ref=cm_sw_r_cp_api_glt_fabc_V3PK049PK0CMTZ08CWT5 And we have some washable heavy duty ones that also can be used to assist in positioning (my dad is bed ridden so that might not be something you need to focus on) We use microwaveable rice bags and/or hot water bottles for warmth. We also use many light layers. In my dads case heavy blankets seem to cause him pain so we try to find a lightweight option. I’m not sure how helpful any of this is but I didn’t not want to comment after reading because this stuff is so hard.
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Post by Sweetjane on Apr 11, 2021 9:55:42 GMT -6
Since you didn't mention diagnosis, I'm not sure if this applies. When my MIL was terminal she was not eligible for hospice as long as she was still under the care (and being treated by) of her oncologist. As soon as she decided no more treatment she was eligible for varying degrees of home health care and then hospice. Hopefully you can get him to see a Dr like you mentioned and then you can assess his situation once you have all the information. It sounds like you are piecing together stuff now and I know that's a lot. If anyone's got this I know it's you McBenny. I'm happy to help in any way if it gets to that.
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McBenny
Unicorn
#sickomode
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Post by McBenny on Apr 11, 2021 9:56:58 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. MH does all his care. Cause BIL is embarrassed. I make food or bring him food. I don't really go in there a lot cause he has neuro damage and sometimes doesn't know he's wet until he sees it or feels it with hands.
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McBenny
Unicorn
#sickomode
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Post by McBenny on Apr 11, 2021 9:57:46 GMT -6
My dad is going on 2 years into a terminal illness diagnosis and has been dropped from hospice. My brother is doing the caregiver thing and it is HARD so I’m so sorry you’re having to go through this As far as bed wetting/leakage we use these Medline - MSC282070LB Heavy Absorbency Underpads, 36" x 36" Quilted Fluff and Polymer Disposable Underpad, 50 Per Case, Great Protection as Bed Pads and Pee Pads www.amazon.com/dp/B002NHIFNW/ref=cm_sw_r_cp_api_glt_fabc_V3PK049PK0CMTZ08CWT5 And we have some washable heavy duty ones that also can be used to assist in positioning (my dad is bed ridden so that might not be something you need to focus on) We use microwaveable rice bags and/or hot water bottles for warmth. We also use many light layers. In my dads case heavy blankets seem to cause him pain so we try to find a lightweight option. I’m not sure how helpful any of this is but I didn’t not want to comment after reading because this stuff is so hard. it's very helpful. I'm making notes.
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McBenny
Unicorn
#sickomode
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Post by McBenny on Apr 11, 2021 10:00:49 GMT -6
Ok this is what we have going on:
He does have Medicaid
He has applied for disability. It's flagged as a priority claim due to his illness I did confirm this part. They just got it and are waiting on his records coming in.
We refiled his unemployment claim. He was working at the time of lockdown and would qualify for pandemic benefits but we have to prove he was working at that time. I'm reaching out to HR.
MH has been talking to a nursing home and getting the records they're asking for.
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FlightView
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Post by FlightView on Apr 11, 2021 10:04:48 GMT -6
My brother wears depends and uses chucks, he’s 27. My parents have him sit on the toilet every few hours to reduce accidents.
Shower with a detachable head.
Does he need a cane or a walker? He can also push a stroller for support too.
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Post by greykitty on Apr 11, 2021 10:06:59 GMT -6
I am so sorry. Please, if there is an Amazon or other list, or Zelle or whatever, I would be honored to contribute.
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thatgolfb
Unicorn
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Post by thatgolfb on Apr 11, 2021 10:09:04 GMT -6
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thatgolfb
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Post by thatgolfb on Apr 11, 2021 10:09:51 GMT -6
When my FIL was cold all the time from chemo, he wore beanies constantly and it helped. A lot of heat escapes from the head (I’m sure you know this).
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thatgolfb
Unicorn
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Post by thatgolfb on Apr 11, 2021 10:10:31 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. Maybe even the chucks pads from the hospital? The blue and white ones. Similar to puppy training pads, I imagine.
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thatgolfb
Unicorn
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Post by thatgolfb on Apr 11, 2021 10:11:04 GMT -6
Sorry, I haven’t read the whole thread and I’m probably repeating things.
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kaimee
Bronze
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Post by kaimee on Apr 11, 2021 10:18:10 GMT -6
First of all, I am so sorry that you and he are going through this.
For the bed wetting, I've definitely found (at least in the incontinence products that I've used in the hospital) that the wrap around "diaper" style of briefs tend to do much better at stopping leaks than the depends pull up styles. I can completely understand why he may feel resistant to that though. Sometimes we also stick the thick maxi style pads into briefs to add to the absorption if there is a person who tends to have large incontinent episodes. The chux pads (there are disposable and washable) also tend to work really well at avoiding whole bed changes.
As long as he doesn't have any sensory impairment that would lead him to not notice a burn, a heated blanket seems like a good way to help keep him warm. I don't know if his hands and feet are a particular problem for him, but thicker socks, and even those fingerless gloves might help keep him feeling warmer too.
Sometimes our patients without much of an appetite will drink ensure shakes that we mix with ice cream to make them tastier (although he might not like this as much if he's always cold).
On the getting help front, he might qualify for hospice-like said by someone else earlier, it's definitely not just for the last days/weeks anymore. Even if he doesn't, it sounds like he should definitely qualify for a home nursing company. Most companies that I work with also have a hospice side of things, and the nursing staff should be able to talk with you all about making the transition at the appropriate time. Once he's on hospice, you should qualify for respite care - which can look like anything from coming in to help him bathe and stay with him x number of days a month/hours a week while you run errands or even a certain number of days in a skilled nursing facility (nursing home) a month (this probably varies company to company).
Since it sounds like maybe he doesn't have a pcp, I would reach out to your doctor's office. They should have a social worker there who can help guide you through the nursing home placement process, and getting him on medicaid if he isn't already on it. Otherwise, your local senior resources group should be able to point you in the right direction. The nursing homes themselves also have social workers who will often help with getting the insurance side of things squared up-I have seen them do this before the person is even placed there when you apply to get him in.
I'm sorry this is such a book-full disclaimer, I'm not a social worker, but I am a nurse at a very small hospital where we don't have a social worker, so nursing does all of the home health referrals and nursing home placement paperwork.
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Post by oceanblue on Apr 11, 2021 10:30:55 GMT -6
I’m sorry you’re dealing with this. The burden of the day to day tasks as well as the mental burden is so much to have placed on you and your family.
I understand your H’s concern about him passing away with the kids there. I’m not sure if he has Medicaid or any other insurance, but if so I would contact them to figure out what you need to get him set up on hospice care or at least get a home health care aid to help with the day to day tasks. I’m assuming they’ll need stuff from a doctor before doing anything, so I would figure out what you’ll need prior to getting in contact with a doctor so you can get the process started quicker. Then I would try to get in contact with the dr who said there was nothing more they could do, or try getting him in with another doctor who could help get the care process initiated. I know this is all easier said than done.
Another suggestion would be to contact some local hospices, home health care places, or a local foundation on aging to ask about resources. These places may know of assistance programs or other options that may be available if he doesn’t have insurance to help with costs or care. I also wonder if homeless shelters may also have information on some options for you if you explain the situation to them, but I’m honestly not sure.
I think the grumpiness is probably pretty common. Just like people go through the stages of grief when mourning a loss, I think people with terminal illness also go through that same kind of grief themselves. I can’t imagine the mental toll of being in pain and uncomfortable while also feeling like a burden to others, coming to terms with everything, etc. It’s such a hard situation all around for everyone involved.
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vino
Opal
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Post by vino on Apr 11, 2021 10:43:11 GMT -6
Lurker here. I’m so sorry, this is a tough position to be in, and it will change from day to day, very much like a child as you mentioned.
My Mom was my Dad’s caretaker during his ALS illness, she used a lot of items already mention; electric blanket, puppy pads, depends, fuzzy socks, rice bags etc. He also appreciated a heavier eye mask, so he could nap whenever and the weight helped him relax a bit.
It took a while for us to realize but rather to fuss over him we’d just ask him and he’d find a way to communicate with us what he wanted most of the time it was helpful; we’d read the newspaper to him, turn on the radio quietly while he just looked outside, be in the kitchen part of the busyness of the house or quiet time away from everyone.
And yes, the grumpiness is normal.
If there is an Amazon list/go fund me please link here I’d be happy to help out your family.
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Post by boycebear on Apr 11, 2021 10:54:14 GMT -6
Oh my I'm sorry. I work with extreme complex care clients and spinal injuries just the right side of incompatable with life, however, their housing is set up for this. Are you in a single story house? If so, can you look into a shower/toilet chair? They're really handy to roll over the toilet if the person using it can't or struggles to walk, although to use in the shower you would need a wet room. As far as warmth, rice bags, hot water bottlesthermal socks etc. If he's struggling with ladder control at night I'm not sure an electric blanket is a good idea. A client of mine has the mattress protector (like the ones used for kids), then puppy pads on top of that, then a sheet and also incontinence pads in underwear, and we just check every hour and clean and change when needed. Does he struggle getting I and out-of bed or movement in general? Mobile hoists might be a viable option?
I'm really sorry you're going through this, all of you. And I'm sorry if nothing I've said is relevant or doable, but I'm working on what I know from my job, that's all I've got.
I hope you manage to get to a comfortable place for you all soon, and that you BIL can be as pain free as possible.
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AmyG
Ruby
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Post by AmyG on Apr 11, 2021 10:58:26 GMT -6
Contact medicaid to get him a dr assigned locally, if his is from out of state ask about expediting the process of getting it with new state. At what point id it required for him to change his address with them.
Call state medicaid office to see about social worker dealing with most of this process for you.
He may want medical power of attorney so your dh can make some decisions or sign documents instead of him having to do it.
Contact old dr for records but need local dr to receive them usually. He may be able to send the records directly to hospice so he can be assigned a hospice dr.
Contact hospice locally to ask for help expediting the process. Depending on where hes at in the dying process they may have hospice nursing facility he can transfer to which often is a faster thing than getting into a regular nursing home.
Honestly a visit to hospital er for management of pain or other symptoms may get him social worker and services faster than trying to do it from home.
If hes sometimes aware of need to urinate and is able to get up to use bathroom he may benefit from a bedwetting alarm that is set to go off at first sign of wetness. But if nerve damage is severe, that may only work to let him know he needs a change.
Consider a heated mattress pad. You put waterproof regular mattress pad on top of it. Then sheets pad. Then sheets and pad again if mattress will allow for layering.
My brother in law went thru going to the hospital and girlfriend saying he could not go home cause she could no longer care for him in her house. Thats so hard to get bad diagnosis and be homeless.
When talking to social services make sure they know hes homeless and you are trying to help, but you cant be his everything.
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jorkzy
Emerald
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Post by jorkzy on Apr 11, 2021 10:58:40 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?
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AmyG
Ruby
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Post by AmyG on Apr 11, 2021 11:04:30 GMT -6
If he qualifies for hospice but they dont have a placememt for him, Medicaid should pay for nursing home if he meets the low income level. Make sure social worker knows about income thongs like unemployment and applying for disability. A chunk of back pay unemployment could add up too much, but doubtful.
If he can get hospice coverage, and they dont have a place for him in nursing care, they will bring in hospital bed, pads, bathroom aides, whatever he needs usually. They can be a big help on planning and supports But they will expect you to do most of the care. Make sure they know that you cant do that or what your limits are.
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Post by Deleted on Apr 11, 2021 11:05:57 GMT -6
This is just my opinion but if you're actively working on another living arrangement, I don't think I'd spend the time and energy working towards equipment like shower chairs, lifts, etc.
The nursing home should assist him with getting or providing all these necessary items.
This is only if you plan on him being with you short term. Again, this is just my opinion.
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kaimee
Bronze
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Post by kaimee on Apr 11, 2021 11:08:34 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.
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Post by enchanted on Apr 11, 2021 11:13:31 GMT -6
I'm so sorry. You've received a lot of good advice.
I know you know this, but being the caretaker is draining. I know it's a pandemic, but I hope you can find ways to take care of yourself and for your husband to do so as well.
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Post by imapenguin on Apr 11, 2021 11:15:56 GMT -6
I’m so sorry McBenny. I don’t have any advice that hasn’t already been given, but we’ve been dealing with a similar situation with my grandfathers terminal illness for about a year and a half now and it adds stress even from afar. I can’t imagine if I were dealing with it in my house on top of my regular day to day.
My sister is a social worker for hospice care and I’d be happy to connect y’all if you’d like to ask someone questions who has some expertise in the area.
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TheoV2
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Post by TheoV2 on Apr 11, 2021 11:16:40 GMT -6
We went through a lot of this with my FIL last summer. First, PLEASE reach out to me anytime you need to talk, vent, or ask questions. There is no judgement from me on any feelings you might be having. I'm going to make another post to answer questions.
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🍍 🍊 Fineapple 🍍 🍊
Emerald
I never gossip, I observe...And then relay my observations to practically everyone.
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Post by 🍍 🍊 Fineapple 🍍 🍊 on Apr 11, 2021 11:18:24 GMT -6
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. 🤞🏻 OMG let me bribe them. Tell me who to call. I offered to drive down and out her out
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TheoV2
Sapphire
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Post by TheoV2 on Apr 11, 2021 11:19:50 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.
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Post by Nonniedee on Apr 11, 2021 11:27:16 GMT -6
OMG let me bribe them. Tell me who to call. I offered to drive down and out her out I’m focusing a lot of my Ramadan prayers on her gtfo
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McBenny
Unicorn
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Post by McBenny on Apr 11, 2021 11:31:05 GMT -6
My brother wears depends and uses chucks, he’s 27. My parents have him sit on the toilet every few hours to reduce accidents. Shower with a detachable head. Does he need a cane or a walker? He can also push a stroller for support too. He has a walker and cane. Some days he moves about well and other days he doesn't. He fell last night and we weren't here.
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