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tripete

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Today was another clinic visit in Hershey, PA. It was a rough day. My breathing numbers were so far in the tank that they have set up for HOSPICE to visit me Friday. My strength well they recommended that I move to the power wheelchair full time (I did have two falls this month) and that I get a Hoyer Lift. Then to top it all off my Dr told my wife that "there was no since for someone gone as far as I am to take Radicava".

This last statement crushed her and she stormed out. I don't know that we will ever go back - she just cant handle the "no hope" attitude. The other thing that upset her was that they keep trying to push medications on me for pain, cramping etc.. Even when I have consistently said that I don't want them.

After the poor breathing results all but one of the specialist who saw me asked "What can we do for you?" The clear implication was that because I will not do pain meds, feeding tube, or ventilation that they had done what they could and were done with me.

I asked if I could get a folding/portable Hoyer Lift and was told that medicare will not cover a folding one is that true?

What lift is recommended that Medicare covers?

With Hospice coming Friday what questions should I ask?

Thanks for your help and listening.
 

lgelb

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Hi Pete,
Sorry to hear both of your progression and your rough visit. Whether or not Radicava makes sense, there are always opportunities to improve life on your own terms, to the last breath.

As Medicare's manual states [bolds mine],
Medicare does not cover electric patient lifts. They are considered a convenience device. However, you can apply the cost of the manual lift towards the purchase price of an electric model by using an Advance Beneficiary Notice (ABN). You will have to pay the difference between the two items. In some cases it may be cheaper to purchase an electric patient lift directly from the medical equipment store.

So it is not folding vs. not folding, it is manual vs. electric. Since no one in their right mind would care for a PALS using a hydraulic lift, what this amounts to is P/CALS are either paying for the difference, buying their own, or making use of a loaner. Typically, loaner closets don't stock folding ones, so if you want one that folds, it most often boils down to buying your own and getting some reimbursement via Medicare, but if you have traditional Medicare you would need to get "denied" for it first (ABN).

There is another thread on folding lifts: the Hoyer Advance, Liko Light and Molift Smart.

Re hospice, feel free to listen to the pitch (just as you would listen to any other pitch) and ask what their plan of care [do what, when, why] would be -- it varies a lot, as you have read here. If they promise help that your wife could use, it may be worthwhile. But you do not have to sign on just because your clinic thinks it's a good idea. If you are not doing pain meds, are not experiencing air hunger and feel "stable" for where you are with breathing, you could put them in the parking lot for now, or sign on to get to know them with a limited mandate, if you will. It is totally your and your wife's call.

Best,
Laurie
 

JimInVA

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Pete,

On our last clinic visit, our doctor (who we think very highly of), suggested that because of her breathing history and monitored decline, she was likely within her last 6 months of life. He said that when he has indication of such a situation, it is expected that he'll recommend hospice. In Darcey's case, because of a whole bunch of other factors, he said, "I am hesitant to recommend hospice... but I will approve you for it when you think the timing is appropriate". That was in March of 2015. Today we're looking forward to another wedding anniversary, another birthday, the next Thanksgiving and the best Christmas yet. I guess what I'm trying to say is that its just not over until it is really over. So don't lay down and beginning waiting for the end just yet!

In regards to Hoyer lifts, we use two. I have a lift that stays upstairs where the bedroom is and a folding portable Hoyer brand (manual) that stays downstairs and which goes with us when we travel. The one upstairs is on loan from our local ALS closet. The folding portable one we purchased out of pocket... and it has been worth every penny for the ease in transporting in our wheelchair accessible van.

We've also looked into hospice and haven't yet found any reason to take that ride. I suspect most of them work well for other types of individuals (i.e. those with terminal cancer) but not with ALS. As best as we've been able to determine, it will not be helpful to bring them in until Darcey becomes entirely bedridden and needs medicine (i.e. morphine) to ease difficulties at life's end. But keep looking. You may find a group that can provide services that will be helpful to you. Regardless of what you find, it always feels better to know that you looked into it rather than to wonder what you might have missed by not pursuing each company's offering.

My best to you, good sir!

Jim
 

tripete

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I really am not at all worried about what the "numbers" mean in regards to how long I have left. It is hard for me to accept using the power wheelchair all the time as I know with this illness that once your body forces you to start using a new "tool" you never get to go back.

I am looking at hospice in hopes that they can relieve my wife from some of her regular caring of me. Bathing and babysitting (the 52 year old lard butt) for a couple of hours a day for example. I don't know if this is what they will do or not. My guess is maybe. I was initially talking with the social worker about taking advantage of an ALS association program that pay for 12 hours a week for a caregiver. The next thing I know the head nurse for our chapter was in my room telling me that she thinks I need hospice and was setting up an appointment.

Unfortunately my finances have not allowed me to purchase a wheelchair van (I almost bought one but the floor was rotted). I was hopping that I could use a portable lift to get me in and out of a truck that would have my PWC in the back. we have used my in laws truck some and my wife can get the chair in and out of it with a ramp pretty easily. Is it feasible to use a lift to take me from the passenger seat to the chair and vice versa?

Ii amazes me how hard it is to get the right tools and help that we need. Insurance determines what we can have even if it the tool for us.
 

frankb

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Sorry, Pete, for your rough clinic visit. Empathy goes to your wife.
 

JimInVA

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Peter,

Whether or not a hoyer lift will work moving you from the PWC to the passenger seat (and vice versa) will depend upon how well it can slide into the passenger space with you hanging below it. The lift needs to come high enough to get you to the height that you need to be just above the seat... yet low enough that it will still fit into the opening and can move far enough in to seat you safely. And by safely, I mean just that. "Tilting" the lift to make it work can be a recipe for disaster. Once one side begins to lift off the ground you're that much closer to the entire lift rocketing out from underneath. You'd fall uncontrollably and your wife could easily get hurt should the lift hit her legs... either knocking her down or bruising/breaking something. I'm sure you'll both be smart about it... and I mean no offense or implication that in a desire to make it work you might not recognize the potential for things to go awry. And not to imply that I'd ever have done such a thing (and perhaps luckily survived). You know... 'just saying'... :)

I'm glad that you have the option of using the truck. And even more so that your wife can handle the ramps for the wheelchair. As I think about it, you might really need the hoyer to be foldable and portable. The standard lift, with its 3 wheels, might prove difficult pushing it up the two ramps. The portable hoyer could perhaps be lifted into the truck rather than to have to negotiate the ramps. The hoyer's weight, whether folded or tall, is still the same - heavy.

I was very familiar with the adage that says, "necessity is the mother of invention." The challenges of adapting to the many changing phases of ALS has motivated the creation of so many things. Yep... where there is the will you will find the way.

Darcey is fully PWC bound and has virtually no use of her arms, hands or legs. She uses her Trilogy when both awake and asleep. I will still leave her for short forays out (i.e. a quick run to the grocery store or to grab some takeout)... but I try to minimize such "leave her alone" trips. For the most part, her breathing is steady... and provided that she's not drinking something, she's not likely to choke. Sometimes, completely out of the blue, her lungs get congested and she needs use of the CoughAssist to keep breathing. The hospice we interviewed with would not allow their staff to use the CoughAssist. And toileting requires the use of a hoyer lift and sling. The hospice staff could walk her to the toilet (not a valid option)... but would not be able to use the hoyer to lift her to the toilet. So, for me, leaving Darcey with hospice for an hour does not mitigate the risks of leaving her alone for an hour. <sigh> But we will persevere and will continue to look.

I don't know if any of my babble will prove helpful, but it was nice to take a moment to come in here and attempt to lend a hand. Sometimes I feel like I'm in a perpetual "head down, next task" mode... so this was my therapy.

My best!!

Jim
 

Manhattanite

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Sorry, I have to disagree with the statement that hospice does not work for those with ALS. Of course hospice services vary widely depending on where you live, but in our case in New York City, hospice provided us with:

- a home aide 4 hours a day Monday-Friday, which was a great help to me as a CALS working full time.
- the ability to keep our respiratory therapist and the same equipment (this took negotiating as they had to enter into a separate contract with the provider)
- all medications with a $3 copay except Neudexta (insurance covered the latter)
- additional comfort medications in case of distress, such as morphine
- weekly visits by a nurse
- bedside commode, shower chair, etc. (they offered a hospital bed but we already had one)
- all of the enteral feeding supplies and formula
- a social worker and a counselor.

For us, choosing hospice was the best we could have done. When my PALS died at home, all I had to do was call hospice, not 911, and the hospice nurse came and took care of the death certificate. My hospice also has offered me group grief counseling, which I have not used yet...

Again, not all experiences with hospice are like this, but you have to listen to the sales pitch as Laurie says and then make your list of pros and cons.
 

Jrzygrl

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Pete -

Sorry about the rough clinic visit.

If you are with the Philly ALS Assoc, the 12 hour/week caregiver (Abrams) program is great! We have an aide who comes in twice a week (we are not yet using the whole 12 hours) so I can go out and run errands or have some "me time". It took us a couple of tries to find the right person, but we are happy with the one we have now. She helps get him up/dressed/bathed or cleaned up and fed on the days she's here. She had not previously worked with anyone with ALS, but has been a quick learner. It has really helped me out. They also have a transportation program, if you don't have a wheelchair van. I think it is mostly for doctor visits, but you might want to check that out and see what they can provide.

My husband is now in a PWC now, unless he is in bed. He can still bear weight on his legs, but that's about it. His arms are also very weak. He just got back from an hour/hour and a half jaunt all over our neighborhood. It has given him the freedom to get around some on his own. It's his time to get away from me! He met and talked to a bunch of neighbors while he was out. So, the wheelchair has been good for him.

Good luck to you!
 

tripete

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Initially the social worker was talking to me about the Abrams program, but then because I "qualified" for Hospice they thought that would be better. I have been very discouraged and disatisfied with the Philadelphia ALS association.
 

lgelb

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If you are interested in car transfers, Pete, look at a 4th folding lift:

Arlo Huntleigh Maxi Lite

Though again probably not cheap and not sure about using with the greater height of a truck. Also, how long will you be able to tolerate a regular vehicle seat?

Is there no transit where you live?
 

patrick123

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Hi Pete,
Before you enroll into hospice get everything you may need such as a PWC, BiPap, any kind of lift cough assist. Once you are in hospice, you no longer qualify for any of those items.
Patrick
 

gooseberry

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Ok Pete breathe. Is there anyone, a family member, someone on your medical team, a friend who can help you with this?

Basically what you are saying about refusal to use the pwc means you will have more falls. Can you get up on your own if you fall? If not, using your tools may ease both your worries and your wifes.

Sending you both a hug.
 

Lkaibel

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Warm thoughts Pete. I was just thinking of you the other day.
 

tripete

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Goose, I am trying more and more to use the PWC because it makes it better for my wife. When I fell it took us probably better than an hour to get me up. I have no ability to do it on my own. The last time I had her bring the PWC to me, put the feet holders under my rear and the use the raise leg function to move me up like it was a fork lift and I was a pallet of lard. Of course thats a lot of stress on the PWC and I was soar and exhausted for 3 days.

I have agreed to work with hospice after our meeting with them yesterday. So Monday they will begin paperwork.

I wonder sometimes if I am still even a human being or just a high maintenance blob. But then there our times like last night when some how I was able to manage to have my wife sit on my lap (hell the legs dont work very much anyway may as well use them for something good), I warbled my hand up and down her back in an attempt to give her a scratch (she has always loved the scratch), and hugged her with what little strength I could muster. It seemed to comfort her after what has benn a horrible week for her. I think maybe she saw me as her husband and a man again if even for a few seconds.
 

Lkaibel

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You are a husband and a man Pete, a fine one. Glad you and your wife got to have that moment.
 
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