At A Crossroad I Have Questions

[affected]

Paul thanks for such a comprehensive answer here.

I can see how dedicated you still are as a CALS, and you have described so clearly how this solution has worked for both of you.

No decisions are easy with this disease. You are probably giving your PALS all the care that would not be easily giving by the facility if they were doing all the care and so you have made the situation work by being so involved.

 

[pdcraig]

Thanks Tillie.

I know I'm in the minority here having my PALS in care rather than with me at home. It's funny how many people think when that happens you're done, off the hook so to speak.

Because ALS isn't common, I did a lot of support helping the nurses and PSWs get up to speed on how to treat him. He's the first person they've had. There are no places dedicated to younger residents, he's just turned 50 in a place that is mainly geriatric care. A big adjustment for the both of us.

Helping with his care means things get done the way he likes. If it takes me 1/2 an hour to get his teeth done so be it. I have time, they don't. I've tried to help him keep a measure of independence from the institutional routine. It's amazing how many rules and regulations the care workers have to follow but I can do anything because I'm his POA.

Admitting that he was better off in care rather than with me at home was one of the hardest things I've ever had to do. There was such a sense of failure for not being able to figure out a way to make the situation work. I cried for a week straight every night when I got home. It was pretty cold comfort knowing it was the best decision for him.

We've both had some time to adjust to our new normal. I think at first he was afraid I was just going to leave him there. Now he tells me to go when he's tired and wants to go to bed. He knows he'll see me the next day.

It's tough but it works for us.

Paul

=o0:|0o=

Prince of Persistence

 

[affected]

All I can say on that one Paul, since Chris was at home with me is - whenever he was in hospital I was more exhausted than when he was home.

So I don't envision that you just have it easy because you are doing your care the way you are.

I'm really pleased that you can start to talk here because there must be many others in your situation and we wouldn't know exactly how things are for them, or how they could make it work, so your experience will be invaluable.

 

[scaredwifetx]

Paul, I just wanted to thank you for posting this thread. You are not the odd man out as we are all odd here and we all deal with this monster differently. I know that our being on this forum and sharing our feelings and experiences makes us all wonderful CALS. I also think that the two of you are inspiring and the love you share is heartwarming. Welcome and thank you again for sharing.

 

[SLAUGHTER1555]

Hi Tillie we have a power chair but no vehicle for it and the bathroom actually is pretty big so the space is not our problem. There is no hoist we can get in this apartment i dont believe. He mostly sits since he cant stand very long or walk. We do go back and forth between the powerchair the manual wheelchair and the recliner. The hospital bed is uncomfortable for him we have a gel overlay but he have the hardest time in the bed. He will sit in it maybe lay in it to watch tv but he sleeps in the recliner and i sleep on the couch next to the recliner. I've tried going in my room but he has some issues which causes me to come back in so i have given up on trying to sleep in our bed smh lol. Mostly our problem is we have no money. I did contact our person at the ALS Association and she said to me she have no idea where to direct me. Basically because of the disability income he receives apparently its too much income for any government to help us. He gets too much for medicaid or to get full time aide so i can return to my job or even get another job, he's not old enough for Counselling on Aging or any other senior help until he's 62 or 65 and he's only 60. So i'm going to trust God to make away for us and believe and look for a miracle. I do not want to complain hope this doesnt come off as complaining because we could not have the income we do to pay for the basic things like rent, car, lights and food. And we dont always have enough to get food or clothes but God always make away or allow someone to help us so for that i am truly thankful.

 

[SLAUGHTER1555]

Thanks Laurie and I didn't know you can have a lift in an apartment? Who do you contact about that? that is the biggest problem trying to lift or move him. It such a strain on him having to pull and lift himself with his arms since they are still his strongest compared to the rest of him. But he is so worn out bout time he's done and i simply can not help him like he needs. And you are right about the medicaid limit and we are over it unfortunately. Most of our equipment comes from the ALS loan closet if they have it we can get it so that is a blessing not struggles in that area. And as far as working i would love to go to work but i have to get someone to stay with him for the length of time i would be at work and there is no one who can do that. We cant get a full time or part time aide with our income. I thought about Adult day care but it cost so much for that it might not be worth it to do. The guy at the Mobility van place gave me some numbers to see if we can get some donations for a lift van so i have to check all that out. Until then I will be home taking care of him, its winter anyways so ill just hibernate until it gets warm. PLus we go to the chiropractor 3 times a week for the next 6 to 8 weeks so a job is out right now anyways. Thanks for your information every lil bit helps.

 

[SLAUGHTER1555]

alswife77
Our ALS worker Pinky who is so awesome by the way told me the same thing but my husband does not want to deal with them as it means death to deal with hospice smh she explained that's not all they do but he wants nothing to do with them. Plus he does not have a PEG, he does not want a PEG and i think that is a qualification you have to have to have hospice come in and do all those things. So for we work with ALS clinic which he goes to every 3 to 4 months. We are in the process now trying to get an IPAD for his speech to help out with that as it has gotten worse but over all he is doing good always he feels pretty good. I crack a lot of jokes or tease him to keep him laughing so. But its me who leaves the room to go break down. Its absolutely unbearable to see him and hear him but at the same time the way he talks sounds so sweet and innocent it melts my heart everytime he talks smh and then i just fall out but not in front of him of course. So Pinky says if its a way we can get him in hospice that would make things a lot easier just like you said. We shall see

 

[SLAUGHTER1555]

Pdcraig
you answered every question and almost every concerned i had. Its nice to know you can do all those things at the facility but i can not imagine how hard it was to leave your PALS! Just thinking about it make me feel guilty. I have one medical POA where his neuro doctor is. He has a pulmonary doctor for his sleep apnea at Mercy here but don't think i need one for that. We are getting ready to get a pulmonary doctor for the ALS to watch over his lungs as he has some lung issues but nothing major and it will be at the same location as the neuro doc so that POA should cover him to i hope I'll find out. And I have already had a slight run in with his kids about insurance policy smh but we got that fixed i banned them from my house until they got some sense. He has stated what he wants done if that day ever comes due to this illness so we are good on that. As for as property he has none lol i'm kinda glad,most of what we have we got together or its all in my name lol but heck i don't have much either lol. Thank you so much for sharing your experience it really was a great help. I have mentioned a nursing home to him but he was not having that and i feel guilty for thinking it or wanting to do it so for now i will keep doing what i'm doing but i am aware of my well being and my limits and i have told him I have an 11yr old daughter i can not kill myself trying to maintain his well being there's only so much i can do. He is sometimes unrealistic about some things and this disease and i have to call him on it every now and then I have to remind him i cant do this on my own i need help but like you said i don't think he really gets it he is really scared and that's what is so hard to leave him well consider facility. He's afraid very afraid smh

 

[SLAUGHTER1555]

pd craig
thats why i ask this question because i wanted to know who else has done this was there as thread on this subject of putting PALS in a care facility. Most of the CALS do care for their PALS at home so it kind of make you feel like your in the minority thats why when i read a thread you had up i ask you how was it to make that transition. Like Tillie said you gave an excellent description of the process.

 

[affected]

Are you taking your PALS to a chiropractor? May I ask what for?

 

[lgelb]

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.

 

[Diane H]

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.

 

[pdcraig]

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

 

[SLAUGHTER1555]

Hi everyone i have some good news after reading your post Laurie about having a hoyer lift in an apartment i talk to our ALS person who helps us with all medical equipment and she was going to loan us one but she said it would be best to get it thru our insurance! had no idea we could have one of those! Do you know how much of a help this will be for me and my back! So i called the doctor offices today to get a scrip for it and get an appointment to be trained on it. I am so thankful for this form it is very informational and encouraging! Thank you Thank you Thank! will keep you posted on how it goes.

 

[SLAUGHTER1555]

Are you taking your PALS to a chiropractor? May I ask what for?

Hi Tillie and that is my question too lol but my husband thinks getting adjustments will help so we do what makes him happy. The chiropractor uses a machine to adjust him not the old school way. The computer and this jack hammer sounding tool goes down his spine and counts all L5 and all that stuff not that savvy on this and then he goes back and applies like 10 to 25 pounds of pressure and it aligns his back. The doctor says it can help relieve some of the pressure off his back due to some damage he already had prior to getting an ALS diagnosis. We were preparing for surgery actually but then this. He looked at his MRI and you can see how the spinal fluid or cord is being pressed by the bone spurs and disc degeneration. He says he feels good and stronger after each visit but when we go back he its the same hes stiff. The doctor feels if we do this long enough it will train his body to stay aligned and help the ALS alittle. hey all you can do is try and again if it makes him happy we do it