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lgelb

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A Hoyer lift is the great equalizer, DrDark. The difference between my weight and my husband's was about equal to yours and your wife's, and I certainly used a Hoyer by myself, as many CALS in similar situations, some of which you have heard from here, have done.

That said, transfers are substantively the same with or without a trach, so that's a decision that should be based on much more.

And from everything I know, while Jonico's wife may consider Hoyer transfers much worse than other kinds (not sure how much Hoyer experience she has to judge that?), most PALS prefer whatever transfer procedure is most safe and comfortable.

Nor does being "bedridden" relate to either type of transfer specifically, nor to a trach. Some PALS with trachs get out and about. Others don't. So we shouldn't lump all that together.
 
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jonico

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Hoyer

Jersey Girl, We have a Hoyer as a back-up. Thanks!
 

jonico

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I'm sorry Dr. Dark, I seem to have an uncanny ability to be discouraging when I want to encourage going with the trach should the need arise. I wish I could delete my posts and start over, but I'd probably just do it again. :-}

lgelb makes excellent points about what a great tool the hoyer lift is. Obviously countless people have used it, and continue to use it with great success...offering those folks an improved quality of life indefinitely.

I've used it with my wife infrequently these last few years and her aversion to it really comes down to two factors. First, I'm not practiced enough at it that I do a very good job for her, so she is more uncomfortable than need be. Second, she wants to stand and pivot for as long as humanly possible. If and when she needs to use it more often, I'm sure we'll both get more used to it, like we have so many other things on this journey.

Jrzygrl is absolutely right - your wife can do it!
 

ReginaS

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I just got trained on how to use 'our' hoyer lift (loaner). It's fully electric for which I am very grateful. I am really glad we have it. We are using it some and it gives me peace of mind that it's here.
Same for us: pAls wants to get up and do whatever he can still do. It would be the same for me :)
He uses a combination of walker and grab bars and for now it is still OK.
 

KimT

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Dr. Dark,

Just wanted to thank you for starting this thread. I like when PALS start threads. It somehow validates me and my thoughts.

I think you got a lot of good responses.

I don't need assistance as of now so I loaned my electric Hoyer lift to our local chapter. I'm still debating about the ceiling lift. There is plenty of room for a Hoyer but the ceiling lift would come in handy, too.

My gut feeling, for myself, is stay alive on BiPap, then use Hospice. I really don't have the financial resources or support team for a trach and that drives my decision. We shall see.

Anyway, I'm glad you're on the forum and active!
 

DrDark

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There are too many of you to list your names, but I am grateful for all of the input each of you have offered. This thread has meandered a bit, and I had more than a little to do with that. I would like to reassure all of you that we are lucky to have a power hoyer lift from our loan closet.

Jonico, you mentioned that you would delve into some of the financial issues around this topic. If you still don't mind, I am curious to hear that. I have two Trilogy's from Medicare and my supplemental, but I am aware that they won't cover staffing support. I would like to avoid jeopardizing my wife's financial security when I check out, after all.

Jrzygirl, I need to find a pin like that and then some! My far better half cares for me, our three children and does consulting work from home, just to mention a few of her endeavors. She is more than worthy, as I am sure so many of the cALS here are. We (pALS) are so thankful to have all of you looking out for us and preserving our dignity everyday!
 

jonico

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In order to live for an extended period on a ventilator and not have it break you financially, cALS need at least one of these three things, in my estimation:

1-They need to be at least reasonably well-off,
2-have enough family / friends / volunteers who won't burnout,
3-government support / special insurance coverage.

1-To adequately care for my wife I had to stop working almost three years ago. I’m sure others carry on while working, but cALS need to accept the strong likelihood that their vented pALS will ultimately need near constant attention. So, with stopping work in my case, that's three years of lost income so far - people can do their own calculations to determine what that means to them. That scenario has the potential to go on for years. You have to be realistic and anticipate spending down savings / IRAs / 401ks.

2-People with a strong Network of friends and family and other volunteer caregivers can also make it work. But you also have to be realistic and understand that some of those people may burn out or fade away as time goes on. That being said, still others may surprise you and come into your life and step up when least expected. Keep in mind that the wear and tear of the duration and the whole experience of intense care giving can be a destructive force on any number of those relationships including, and perhaps most especially, your closest family. On the flip side, those relationships could be strengthened through challenge and adversity.

3-Regarding insurance or government help, private insurance or Medicare offer considerable assistance but leave substantial gaps in two crucial and most costly areas - typically a remaining 20% on durable medical equipment, which is hefty on things like a tobii dynavox or wheelchairs, with the other, and likely most costly, gap being caregiver support / nurses or Aides. Other than philanthropic organizations, the only areas to get that coverage or parts of that coverage to my knowledge are with Medicaid, long-term care insurance, or the VA. There may be other options. Of course one would have had to have long-term care coverage pre – one’s ALS diagnosis, or need to be a vet for the VA to help. Long-term care coverage won't help with the 20% DME, but can provide pretty substantial caregiver hours, or make it affordable to be cared for in a nice facility. I believe the VA will provide pretty much all the equipment you need either gratis or very affordably, but offers very little in the way of caregiver support. That leaves Medicaid as the one area that both takes care of the 20% DME and provides caregiver support ranging from minimal to around the clock depending on one’s specific situation. Every state administers Medicaid differently and some are more generous than others. I encourage people not to assume that since they make a certain amount of money, or have a certain level of assets that they won't qualify for Medicaid in any fashion. You know your situation and you may just be able to ask around about the situation in your state to get a good feel for the potential. But if the situation will be such that neither of you are working, and your income is relatively minimal with just SSDI, private disability or other, it may not hurt to speak with an attorney about Medicaid with a free consultation. If your wife has her own corporation for her consulting work, that could be advantageous in managing her compensation accordingly. Some States can be pretty generous with allowing the spouse of a pALS the opportunity to retain assets such as a home, IRAs or some savings and still be eligible for Medicaid to some degree. There may be a required spend down, which can still be a fair amount less than paying out of pocket for caregivers.

If a PALS-family income ends up being quite low, I recommend the cALS check to see what their state has to offer for health insurance for the cALS if they have no insurance since no longer working. The state may have a tier or two above Medicaid level that can afford a decent savings over ACA Exchange options.

Finally, guaranteed acceptance whole life insurance like what Colonial Penn offers is terrible insurance for any reasonably healthy person of almost any age. But it's worth considering for PALS in my opinion. There's no real downside to it unless the insured lives a long time, which of course for a PALS would be an upside. The policy doesn't pay until 2 years of premiums have been collected, and it reimburses the premiums plus around 10% if the insured passes away prior to two years. Policies like that usually have a maximum of $25,000 which can be a help with funeral expenses Etc.

So…it is my belief that if you don’t have one or more of these three factors covered, it will be a very challenging financial journey if you go the trach route.

Hope that helps Dr. Dark.
 
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