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SLAUGHTER1555

Distinguished member
Joined
Jul 12, 2015
Messages
107
Reason
CALS
Diagnosis
05/2015
Country
US
State
Oh
City
cincinnati
Hi to everyone its been awhile since i posted on here lots of changes with my PALS. So last time i was here i talked about how the his kids kind of attacked him about life insurance policy. Well time has passed and i am no longer angry but i still dont trust them. Since his diagnosis in May 2015 our finances have went down hill as his disability and small pension is our only income and it only pays the bills which i am so thankful to God for because we dont have to have that.

He has progressed in the disease to the point his speech is not as clear and he does not walk at all now, we transfer to pretty much everything. He can stand here and there so i can pull his close up or for restroom purposes. And guess with the help of the lord i m doing it all on my own smh. We had an aide come but it was only for an hour a day to help bath him but i was still doing as much work as it takes more than one person to lift my 6'4 PALS.

So my crossroad is this it is getting hard to handle him on my own, I do not trust his kids at all and they have small kids and jobs so they cant take care of him like he needs to be taken care of. Because he gets medicare they wont give him and aide all day so i can return to work, I use to be able to leave him and just call but now he chokes on food or drinks so i have to watch him more now. He can no longer be left alone. I am looking into Adult services to maybe take him to waiting on that.

The only option left would be nursing home and that is killing me to even think of that smh how do you know when to make that decision? I was going to have a meeting with his kids and siblings to discuss those options but I kinda dont want them in my business. I mention to my PALS that we need to have something in place I cant continue to do this on my own and btw Im 4'11 smh. I cant imagine having to leave him there but what am i to do. God it hurts so bad I have to walk away most times to go and cry it out because its so hard to look at him. I don see him leaving me anytime soon but just watching him in this state is the worse thing!

I have had so many regrets and thoughts of just walking away but who would take care of him surely not his kids smh and that would not be Godly Jesus would not do that Lord help me. Since we no longer sleep in the same bed its like we are not married smh today i leaned and grabbed him in his chair and he said what was that affection for smh i'm like i give you affection but i spend so much time cooking cleaning emptying lifting helping i don't pay attention i don't show close affection smh but i was like you don't show it either smh this sucks so bad. I guess i better work on showing more affection although that is the last thing on my mind didn't know i wasn't showing it.

Do you think its a good idea to talk to the kids even tho they have no real say so being i m his wife but i would never do a thing like that and i try to keep him involved in everything concerning him and his care i will not railroad him.

Do you think we should get a talking device? he doesn't think he needs one but he does smh men and their stubbornness.
 
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Concerning the kids: They don't get to overrule you. First, YOU are the closest relative, not them. You are the next of kin, not the kids. But your husband should have POA and advanced directives written, stating you are the responsible one.

Doctors frequently pay attention to anyone in the family. So you want to be sure that the doctors and administrators know about the problem with the children and show them the POA and advanced directives, so they know only to deal with you.

Physically, you can't transfer him safely. I found out the hard way that you don't want to find a PALS on the floor. I had to call EMTs to come pick her up, and first I had to educate them on paralysis and keeping the airway open.

I know how hard it is to send a loved one to a facility. My family has years of experience with several relatives who couldn't live at home. But unless you can get more nurses to cover you while you sleep, you're going to need to discuss this with hubby. I was lucky that we had 24 hour nurses in the home during the end stages. Before that, we had several-hour-a-day nurses.

You need a really good facility that has experience helping paralyzed patients. Ask your ALSA or your local Independent Living Center for recommendations.
 
Slaughter,
I will ask that you omit religious content in the general forums and save those discussions for the Christian forum you can see in the menu.

As for your questions, I would advise you to have these conversations first and foremost with him. You don't say if you qualify for Medicaid, as would be needed to fund a nursing home if you don't have the resources for that. Other options include trading housing/board for care; engaging part-time student help while you are working; any State or local respite programs for which you are eligible.

Not clear if he has hand movement that would allow for use of an app for speech? If so, that's probably the best option for now. If you could mention any device(s) he can use now (phones, tablets, computers), that would help.
 
He have a POA at UC Neuro doctor office i need to get one at Mercy Health office too. Im just not sure about the kids anymore think i will leave them out of this specially since our last run in. My PALS and i have mentioned nursing homes and he said they take all of your money since medicare does not pay for long term facilities. And unless he has a PEG which would allow hospice to come in medicare doesnt pay for all day home health care smh. So Im hoping i can find an affordable adult service that deals with ALS because he cant just go to any adult daycare. And he has has a few falls and you should have seen me trying to get him up. Heck when the PT was here he fell and she or I couldnt get him up lol the aide that did come was a man and you should have seen him trying to get him up smh. To be honest he really needs a facility but I am just not ready for that and i dont know when or if i will :( i bet it will be a forced situation unfortunately .

Thanks Mike for your input i was hoping to hear from you and a few of the regulars, I have read alot of your replies and you give good information. Also thanks for the fast response was not expecthing that :)
 
It seems to me that you need equipment - hoist and power wheelchair. No one should be physically lifting him, let alone off the floor - this is dangerous to everyone.

I don't understand the financials over there so won't comment on that side of things, but would suggest you talk quickly to your local ALS chapter about help and equipment.
 
"he said they take all of your money since medicare does not pay for long term facilities."

It is a MYTH that nursing homes take all of your money and your assets. Sure, they're expensive at $200 a day, but you don't sign over your home to them when you arrive.

Perhaps someone more familiar with Medicaid will come along. Also, a lawyer (or your good research) can tell you about protecting assets from collectors, if it gets to that.
 
Oh I just saw in your post to another thread that he has either a power wheelchair or a scooter, but not sure which.

A hoist to transfer him, and do you have a shower commode chair too?

I hope your local ALS chapter can help you get on top of these things while you work out the longer term solution. These decisions are not easy.
 
I hope your local ALS chapter can help you get on top of these things while you work out the longer term solution. These decisions are not easy.


Tillie


Queen of Hearts


Yes, i second that. We didn't call until after Kathy fell face first down the stairs, and that was a mistake. They were able to loan us so many items and help organize our plan. There are some states and counties that will pay for a caregiver for so that a person can stay home. There are income limits, of course, however, it is usually less expensive to keep a person at home than to put them in a nursing home. Here in OC, the family can use that money to hire anyone to provide care, which means you could pay yourself, a private caregiver or a care company.

There should also be a social worker available through your ALS clinic, if you are lucky enough to have one near you.

Regarding the communication device. We were able to secure one through medicare that uses eye-gaze to control the computer. It took so long to get (due to dr mistake) that by the time we received it, Kathy was too weak to use it, so apply for it now. Something else to talk to your clinic about. We applied with the speech therapists help.

I was able to find this from cuyahoga county's website about in home services.
http://dsas.cuyahogacounty.us/en-US/home-support-services.aspx
 
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Laurie I'm still fairly new to this form and I didn't know using a religious name in my thread had to go in the religious section. Ill be mindful

We live in an apartment so some equipment cant be brought in we do have bathroom equipment and we have hospital bed which he cant sleep in and wheelchairs. Getting him up and down in the bathroom is whats a task up and down to clothed him even rolling him back and forth as he is so heavy and big. I will do it as long as i can and was just trying to get information and those who have maybe been thru this part of things.

Mike he has medicare who only pays 80 percent which you probably already know that :) he does not qualify for medicaid which if he did they would pay for a long term facility. I read in the medicare book as they were stating that they don't pay for long term care but did mention you have to use your means of income all up first but i will check into it. Thanks everyone for your input i didn't expect a responds this fast
 
Thank you Lovely and we do work with the ALS loan closet service thru the ALS clinic but the social worker we have has been MIA its thru a service i think the doctor office recommended we need a social worker as i have no clue who to talk to what to ask for and how to go about getting it. I will make some calls tomorrow to the office and ask, its been awhile now.
 
Why can't he use the hospital bed?

If you had a hoist and shower chair you would not have this big safety issue in the bathroom. They are the most dangerous rooms - all those hard, sharp edges and glass.

Please talk to your local ALS chapter, I'm sure they can help you work out all kinds of answers to your many questions. They should be able to get an OT to look at your unit and help work out ways to make the space work for you.

We will support any way we can.
 
Oops we were typing at the same time and you answered in part about your local ALSA. Please do call them again tomorrow - sometimes we have to just keep bugging people on behalf of our PALS ...
 
Slaughter, if you have a lift (we did all this in an apt. too, and you need one, as others have said -- thought you were in the process a while back? or am I reading this wrong and you have one?), you can hover him for toileting. You don't need to take him out of the [divided leg] sling.

Why is rolling him hard? Are you moving the lift over carpet or flooring? If there is a room with a threshold that is difficult, you can cover the "bump" with various kinds of plastic depending on the shape/height. Take a picture to your hardware store if need be.

Or are you talking about rolling him in bed? If that's the case, don't. Larry (250#, more than 2x my size, same with lots of people here) was on his back in bed for years. That's what foam and pressure boots and pillows and hospital beds are for, to relieve the pressure that positioning would otherwise cause, and help prevent pressure ulcers.

What equipment can't you have in your apt? You can't renovate if you rent, but I can't think of any equipment we couldn't have.

Qualifying for Medicaid is based on income alone in Ohio, looks like. That's a max of $1833 for two people according to the State chart. If you make more, you won't qualify, but you may want to weigh the pros and cons of working outside the home at this point.

There are many here who are primary home-based caregivers for the full course of the disease. It does take patience, creativity and advocacy. If one person doesn't help, call or e-mail another. If one solution doesn't work, move on. As you can see, we're quick to post, so don't suffer in silence.

--Laurie
 
Slaughter we have had hospice in the home since June. Because ALS has no treatment and is pallative care only, here in Florida the six month rule is not in effect. That may not be the same in Ohio but I would check. Hospice has loaned us wheelchairs, potty chairs, all meds that pertain to ALS comfort are provided and delivered, hospital bed, leg cage, bed pads, oxygen machine for the bedroom, 2 large tanks for outside and the smaller tanks that he can carry and the list goes on. They send a nurse, social worker and a person to just talk to about life views once a week. We now have an aide who comes in three times a week to help with bathing and other personal business. We did buy a motorized vehicle but this was before hospice was involved. Even with medicare and our Humana policy I cannot imagine doing this without these wonderful people. I have heard some horror stories but we have nothing but kind words for these wonderful people. They also help with directives such as DNR and Living Wills which they keep on file at hospice so there is no argument about what should or should not be done. Just the cost of all this would have been difficult to deal with. We are very lucky to have great kids but hospice has made life much easier for my husband and for me. Please please check it out. This is not an easy journey . I hope you get some help soon.
 
Hi Slaughter, My PALS is in care. Unfortunately I'm not any help with the financials or anything like that because I'm in Canada so am unfamiliar with how things are done in the States. I can speak to a few things though.

Get your paperwork in order. Even as his wife, I would suggest you get his Power of Attorney for health care and for property. I hold both for my PALS so there is never any question of who to talk to about his care. His family was interfering to the point it was causing problems. Not in any malicious way but by giving mixed messages to his care providers without talking to us first. Whoever holds that POA ( at least here in Canada) is the one who makes the decisions.

Get a DNR in place if he wants one, again just to avoid any confusion when or if the time comes.

If you need funding, which we did, talk to whatever agencies you need to to get everything you'll need straightened away. It cost me an extra $3000 the first few months because he was being subsidized by the wrong funding program. You'll probably need taxes filed and up to date, property lists etc. He didn't have those done, I did that for him as his POA for property.

I don't know how placement works for you. For us, he was on a critical list because it was deemed unsafe for him to be on his own. That involved an assessment from a social worker and a supervisor. Both people, one visit to the house. We were really lucky, assessed one day, papers signed the next and a bed offer at a facility that night. It was really fast. We were told it could take as long as a couple of months.

I was lucky, he wanted to go to the facility. He was afraid being on his own. I had to work what he got on disability didn't come close to covering the bills. We got the maximum of 3 hours of help a day Monday to Friday. That left him alone for 7 hours each day before I got home from work. Once he got to the point where he couldn't walk, it wasn't safe for him to be at home. Like your family, his didn't help.

Taking him to the facility was horrible for me but it was the right thing to do given what our situation was. It was a tough adjustment for him but, because his anxiety levels went down his breathing and swallowing improved and are still better 6 months later than they were his last month at home.

The facility is nice, not home but nice and the staff are really good with him. There have been some problems but I'm there almost every day so am able to straighten things out fairly quickly. I've heard and read horror stories about other people's experiences but ours has been pretty positive.

On a personal note, I'm as tired now as I ever was. My schedule is a little more hectic than when I had him at home. But, I no longer worry about him being alone. With the staff doing the heavy lifting; cooking, cleaning, and laundry I can concentrate on his care with no distractions. I do physio and massage with him, help him at dinner, make him eat if he doesn't feel like it. I always bring treats with me, he's got a real sweet tooth. I help him floss , brush his teeth, help him with toileting, cut his hair, shave him. All the things I used to do with him at home but not so under the gun. Now I have the time for just him and I, I'm not pulled in a million directions at once.

I'm really involved at the facility, being his caregiver didn't stop with his change of location. I think that's part of the reason our experience has been so positive. I'm still the one who makes him feel safe.

It's not an easy decision to make. It doesn't feel great to make it but his well being has to come first whatever that means.

As the one taking care of him, it's a decision that's your's and his to make. No need to involve anyone else. Talk about it and be honest with each other. Just because he thinks you can lift him doesn't mean you can. I hurt myself trying to take care of my PALS on my own. We had all the equipment, he wouldn't use it or wouldn't use it properly. Our PALS don't always understand we have limits too.

I don't know if this helps but if you have any other questions just ask and I'll do my best to answer. I hope you find your solution soon.

Paul
 
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