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Slaughter,
I think we may be talking about different things with the health care POA (Power of Attorney). It is one document that applies to all the doctors and hospitals. It has to be notarized. There are forms on line for your state or maybe the ALSA or your clinic can help. Normally, you might have it done along with an advance directive about his wishes for treatment when his disease worsens. It is one thing to know his wishes but to get someone else to respect them often requires these documents in hand, especially in a hospital. That would be first on my list.

Has someone from the ALSA or your clinic or a home health agency seen your apt and said a lift would not work, or what? I posted a thread about our loaner lift not too long ago, with dimensions. I'll try to find it tomorrow. You may not be able to move the lift into every room, but to get someone in and out of bed, a wheelchair -- those are the essentials. So you need width in the 30" range, depth in the 40" range near the bed or chair. That's like a couple of people standing back to back, if you think about it. And some kind of turning radius if a turn is required, or you can back the lift up at times. We did.

If you can be more specific about your dimensions or where the bed is, perhaps we can be more useful, but lifts (we are both talking about the kind that roll on the floor, right?) are definitely used in apartments every day.

As for using the bed, not everyone's comfortable with gel. The colder the weather, the harder it can get. Has he tried it without the overlay? Foam overlays (our preference) are pretty cheap (should be 3" for a big guy), or you might find something on c'list.
Hi Laurie the POA i have it was notarized but i thought it was just for that hospital not every hospital that's good to know. I might look into getting one offline or ill ask Pinky our ALS lady and see if she can get one and put it on file with the courts i guess. And we are talking about the same type of lift lol which until you mentioned it i knew nothing about so thank you very much. Were waiting for the doctor to send a script for it and I have to be trained on it. He didn't like the hospital bed mattress that's why we got the gel overlay but he still doesn't like it so hes back on the recliner. maybe we can try an egg crate to see how that works. But i think he wont like that either its something about him and beds smh. So using the lift don't have to worry about door opening since we sleep in the livingroom wide open space :). Again thank you so much for your help.
 
It is especially important with ALS that someone be given Power of Attorney that will allow them to sign for the patient in financial situations such as signing checks, paying bills. It can include or exclude bigger financial things like investments or running a business. A Health Care Power of Attorney gives health care decision making power and the right to all your medical information to someone if you become mentally incapacitated or unable to communicate your wishes in any way. It only goes into effect when either of those happen. Any type of Power of Attorney can be made complete or limited as to whet the designated person (Agent) controls.

Laurie has noted that you seem to be confusing Power of Attorney with other forms of Advance directives such as a Living Will. A Living Will should be copied and given to every doctor he sees as well as to the hospital he would go to. Another copy should be available at home. A Living Will is respected in most situations but is not a legal document. It also has the shortcoming of being written ahead, sometimes years ahead of when it is needed. It may not reflect any changes in the persons thoughts about what they want done, newer treatments and equipment, changes in finances, changes in the health or availability of caregivers, and definitely cannot cover all the things that could happen to us. We tend to consider only ALS progression, but would you have the same wishes if you had something fixable or not necessarily fatal happen? Would you refuse surgery, CPR, or a temporary feeding tube or a couple of days on a vent to recover completely from something?

Health Care (or Medical) Power of Attorney is an alternative but not without problems too. Health Care Power of Attorney is a legally binding document which is held up in court if it comes to that. It can only be used when you are unable to communicate your preferences. You would have to be unconscious or completely unable to blink or otherwise communicate. The moment you can communicate again the HCPOA cannot be used. It has the benefit of allowing your designated person to make decisions about your care in real time. Your specific condition, new treatments, etc. can be considered. The big downside is that you have to choose a designated person you can trust to carry out your wishes even if it means letting you die. To make certain of your wishes, it is important that your designated person be frequently in touch with you, aware of your current condition, prognosis, wishes. etc. In cases where there is family disagreement it provides the legal right to speak for you and make decisions for you that some of the family may not agree with. With a Living Will the family can influence the doctors because they can sue. Even without threatening that, the doctors will think twice if anyone is strongly opposed to following the Living Will. With HCPOA legal protection for the doctors and designated person is far more solid. The really important thing is for the person to have made his most current wishes clear to the family, and that it is his decision who speaks for him and makes the final decisions if he can't.
Thanks Diane and you and Laurie are right we are talking about different POA and the one i have is a medical one for the hospital not a regular one. So where do you get a regular POA? Hes retired from the IRS and man they are giving a fit now trying to speak on his behalf smh i had to get statements from friends and his family and get them notarized too and send them in and i still have not heard back from them. The POA in the hospital states want he wants done if he dies and that's it and it has me and then 2 back up ppl if i'm not available. So i need to work on a regular POA.

What do you all know about life insurance? He has a small amount from his government job and it is very small smh done before we ever met or got married and you can not change it or add to it smh So we really need more but i have read if we did get more you have to wait 2yrs before it would be active and it was going to be very experience. Its about to be a year in May now smh should have gotten it then but we didnt and dont have the money to pay for more life insurance smh guess we have to just work with what we have if that day every comes.
 
Paul has added good information. The Do Not Resuscitate order can be part of the Living Will, or a separate document. Here in the U. S. the Do Not Resuscitate order does not apply to EMS or Emergency Rooms. To cover that, you can download your states Out of Hospital Do Not Resuscitate order from www.eldercareteam.com or googling it. It needs to be signed by a doctor.
 
Hi Slaughter,

I have one more thing that might help but you're not going to like it any more than the idea of a care facility.

I attended a tax info session here in Canada, I'm guessing it probably wouldn't be that much different in the States. It was for people with disabilities and their caregivers/spouses.

Money and access to funding is a problem for a lot of us. Income caps are ridiculously low in many cases. My PALS was disqualified from a lot of programs because he wasn't a senior, over 65, or a juvenile, under 18.

The gentleman who was speaking suggested to a few of the married couples there that were having real money problems to legally separate. It's called an involuntary separation, you can still live in the same house but it means income is split not combined and as his wife if you aren't working his alimony or support payments to you would lower his income to the point were he might qualify for the help you need.

Any registered accountant should be able to tell you if it will work for your situation or if it is even possible where you live.

Another one of those "aint life grand" moments.

A friend who has early onset Parkinson's has been advised by his accountant to do exactly this to get him access to funding that his family needs.

If by chance this would work for you, it is even more important for you to have his power of attorney papers drawn up and notarized. Originally I had the online ones but ran into a lot of places where they wouldn't accept them. No one can refuse to follow them if they're drawn up by a lawyer and notarized. I have left copies everywhere he gets care and with all of the financial places I have to deal with. I carried them with me everywhere for the first few months just to make sure everyone I dealt with had a copy.

We have two things here, a Living will, non legal document you hope doctors will follow or the legal equivalent a DNR, a Do Not Resuscitate order. It's legally binding and has to be signed off by his attending physician. It stipulates what can and can't be done to revive him in the event of a medical emergency. You need a copy with every doctor and facility where he gets care and on hand in case an EMT has to be called to the house.
From the comments, it doesn't sound like that is available in the States, but I don't know.

Your PALS and mine share a few things in common. Mine also has obstructive sleep apnea. He was using a CPAP machine before diagnosis but switched to a BiPAP.

Mine is also scared, really scared. He won't talk about the disease at all with anyone. Keeps everything bottled up.

I wish I had some better news for you but as you know that seems to be in short supply.
Take care.

Tillie and scaredwife, thank you.

Paul

=o0:|0o=

Prince of Persistence
Thanks Pd and right now my PALS when he was younger thought he'd change his date of birth and his name but not legally and he used it for over 50yrs now since hes 60 and never changed it back smh well when he had to file for disability they make you use your legal name and date of birth so now we have a conflict between his legal name and DOB and his fictitious name and DOB. So I am in the process of changing all of this smh ask me how mad i was about this mess! And he use his non legal name on our marriage license ugh! Its a mess! and now Im cleaning it up! All this was done before me! So we will not be filing together he will jam me up with all the confusion. And I have never filed with him married separately. You know a social worker that talk to us kinda mention separating but she didn't mention it was legal and said that ppl were lying so they can get welfare bcuz their income together was too much so they say. That is our problem they say he gets too much money which only pay our main bills so we cant get any help from lots of ppl. Id need to leave him separate and then apply for welfare to get help smh so sad there is no help for PALS and their families who have to most times quit jobs to care for the love one. While cancer is just as bad as ALS lots of ppl can and do survive cancer more because there is treatment but for ALS there is no treatment nothing to stop the dying of the nerves so you would think they'd have more things for PALS as their disease is terminal. It cant be removed like cancer some times can. I just don't understand. And I am not making light of cancer or saying it is not terrible either it would just be nice if PALS and families had just as much help. and this is just my opinion
 
I'm glad you were able to get a lift.
If you haven't already, contact your county social service office and talk to a social worker. They really do understand the system.
You may want to make a few appointments with different hospice agencies and just talk to them about what they offer. It's not
round the clock nursing, but it does take the control of meds, equipment and billing. Perhaps if he finds out it's not a group of people
invading your home every day he might have a better POV?

I'll be honest, we waited too long to start hospice. Kathy's last emergency was an absolute nightmare. If we'd had hospice it would have been
much less stressful and peaceful. The outcome was the same, but Kathy wouldn't have been terrorized in the ER.

Jen
 
Paul has added good information. The Do Not Resuscitate order can be part of the Living Will, or a separate document. Here in the U. S. the Do Not Resuscitate order does not apply to EMS or Emergency Rooms. To cover that, you can download your states Out of Hospital Do Not Resuscitate order from www.eldercareteam.com or googling it. It needs to be signed by a doctor.

For example, Florida Law requires a DNR to be on yellow paper. I carried it everywhere, without my PALS knowing it, just in case we needed it.

Concerning EMS: In my state, when someone dies, you are not required to call 911. Don't. EMTs have been known to ignore DNRs and go straight to attempting all manner of life saving methods, totally disrupting what should be a peaceful passing. When my wife passed, we called the Funeral Home--not EMS-- and they picked her up in the middle of the night. Very nice passing.
 
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