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pdcraig

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I've been catching up today and in the roll call was introduced to Slippery Sally
All I can say is "God d****t". How is it I have never heard of this? Thank you Tillie BTW.
Even 4 1/2 years into this, there is still the seemingly never ending, "I didn't know that."
It got me thinking of all the" why did nobody mention this?" moments I've had over the years.
Like edema, not on my radar at all until my PALS feet swelled up like balloons one weekend. I didn't even know what it was called. Thank you Google for knowing what I was looking for even when I didn't. Oh, that's not an ALS symptom. Thanks, but decreased mobility is. A heads up would have been nice.
Cough Assist, the only reason I know anything about it is this forum and Google. The LTC facility was bad enough with the BiPAP, Cough Assist got the wide eyed blank stare. How is it no one from clinic has mentioned this?
Don't get me started on the red tape. Oh, yes his income qualifies for assistance but he's on CPP Disability, that's federal. We only have rates for ODSP, that's provincial. We don't do anything with CPP. That little gem cost me $3000.
Even on the forum things can get a bit muddled. Hospice for me is mainly an outreach program that can offer volunteers to visit. If I'm looking for support workers, that's CCAC, in Ontario. Who can also put me in touch with respite programs run out of hospitals or long term care facilities or palliative care that is again in hospitals or arranged in home. Palliative care is with the understanding you are within the last 3 months of life and normally referred by doctor.
I understand the differences by country, I even understand differences by region. What I don't understand is why it has to be so difficult to actually get the information.
Did you know a POA could be refused? It took me over a year to get my POA recognized by my PALS HR dept, to get his health insurance premiums paid.
And his bank, also his previous employer, same thing. I never did win that fight. What do you mean I can't call him? Well, we have to verify this with him, can he not come in? If he could come in and do it himself, I wouldn't have this notarized, legal document with his signature on it that was good enough for the federal, provincial and municipal government now would I?
Wait, if he was a bank employee why did I have to do this twice? How could I win with the HR department and not get access to his accounts? Apparently it's a conflict of interest somehow. I had 2 separate files with the same legal department ongoing at the the same time. One went through finally, the other didn't. And yes, I hold POA for health and property.
Like battling through ignorance at every level of the health care system isn't enough. Although I will say, most have been very upfront about having no idea how to treat an ALS patient.
Just one more reason sharing here on the forum is so valuable.
On that note, here is my share, a posey. It's actually a finger contracture cushion. Now that my PALS hands have started to curl, this helps keep him more comfortable. One of the people from restorative gave it to him. Not PT, restorative.
I give up.
Anything you didn't know you didn't know?

Paul

Prince of Persistence

=o0:neutral:0o=
 

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soonerwife

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I completely agree. It's a battle at every turn.

What when you call for a loaner item, do they not be proactive and ask where your PALS is in his progression. Then maybe offer things that might help them. Instead we learn on the forum about things and then call to get them. It's a waste of money for them to drive an hour and a half to bring me something I didn't know about last week.

Why is it like pulling teeth to find out hoe to get formula paid for... it's not a covered item. Well it is covered if I is the only source of nutrition. Oh we don't do the codes, those come from the dr. The dr doesn't know what they need. Oh the nutritionist says maybe try dysphasia? Wth? Two days of phone calls and who knows if we have met the needs of the insurance company.

The list goes on and on... I'm sure we all have never ending stories. Ugh!
 

scaredwifetx

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Totally agree. This is a very frustrating issue with this disease. You have to ask for the equipment and supplies you need. Since I am not in the medical field, how would know what to ask for. Most of the time the medical field doesn't even know enough about ALS to be n help.
 

Narrowminded

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Paul I'm so sorry you've had to go through all of this, the battles are almost never ending in some cases. I do have to say, my physician and the clinic, for the most part have been execellent. No I didn't know about Slippery Sally, but when we first started we didn't have an OT or PT on the clinic staff. We only saw them once or twice before Brian could no longer go. However, my neuro/clinic physician actually made a house call on Sunday.

I had an issue concerning DH's bladder not emptying fully. I figured it out by the lump where the bladder is and if I pushed on it when helping with the enema, the urine came out. He is trying Flomax with him and consutling with the Urology dept. He is also trying to get Home Health out here so they can do a sonogram of his bladder to see the extent of the issue. This man is truly a gem.

All I did to get this was send him and email asking if there was a physician/CRNP/PA with the clinic that could make a home visit and stated my concern and the fact that due to his inability to travel, he had not been seen in 1.5 years at his last hospital admit. The Dr flew into action and is working hard to get us what we need, exploring every avenue. There are some things he has no control over, but did tell me, if nothing else, he would come make regular visits.

Yesterday I met for several hours with our ASLA rep here locally, we spent a lot of time talking about PALs choosing to vent and what they and their caregivers should know before deciding if that is the right choice for them. How they as an assoc could improve what they do from their end etc. Very productive meeting. While it does not help me, I hope it can help others make a very informed decision.

Paul getting back to your Posey (and sorry for the long slug here), In the states a Posey is something used to help tie a person into bed for their safety. My understanding is they are not used much anymore as they now have electronic mats in the bed that alarm if the patient attempts to get up, but were used much in the past. When you first asked your question, I thought why in the world would Paul's PAL need a posey. However, I like what your picture showed much better. I will have to look into those for DH. Thank you for sharing.

Also of note to anyone who may have chosen to vent. I found out yesterday, that if you have a POA written with specific instructions as to what the person holding the power may do, it is possible to use that POA to have a vent disconnected if the PALS has not written down their own requests before becoming unable to communicate. In my case, what that would mean is if things got very bad with DH and suddenly he was unable to communicate his wishes it could be possible for me to make that choice. I know Mike has mentioned how is wife was in her last hours/day. I also know it would have to get to a drastic point for me to make that decision, but it is possible.

I'll be interested to hear other things as well. As I agree, the medical community for the most part is a clueless as we were on day one of this disease. I too have learned much from this forum.

Hugs,

Sue
 

Manhattanite

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I agree this forum is invaluable and the wealth of information surpasses that of any medical provider.

The reality is that there is no one place where one will find all the answers. For example, no one had ever told us that in New York State there is a special Do Not Resuscitate order that you use when you are not in a medical facility and that needs to be signed by your doctor. I just learned this recently despite having consulted with attorneys before.

What I have learned about hospice here has made a big difference in the treatment of my PALS and will make a big difference on the final stages of his life.

Many times through this process I have asked myself what type of care you get when you are economically disadvantaged and do not have access to the internet or information or the education to be able to conduct research.
 

affected

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Hey Paul, so good to see you :)

That posey looks good, I had trouble getting Chris to wear his splints often enough, but I may have been able to get one of them at least in one hand at a time more often. If only I'd known eh ...

Sue did you make the slide sheets and tried them yet?

Definitely this forum contains the best resources, yet it's so vast a new member still has to trawl or ask to find it all. Then combine the differences between countries which becomes a little mind boggling. Still we have so much power together to solve so many day-to-day issues.
 

Loverly

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What didn't I know?

If you're listed second on a POA and the first is still alive you have no medical rights. I spoke for each of my parents while the other was disabled but living. They had listed each other as the first on their respective documents.
If anyone had asked me for the document I wouldn't have been able to assert my rights.

A simple gait belt can save you and your PALS a lot of pain and discomfort.

If you're hoping for your PALS to learn an assisstive technology you'd better practice before she gets too far along to control even the simplest of motions. By the time Kathy got her power chair and communication device she was too weak to practice the necessary movements enough to for them to help her.

Slippery Sally was new to me too. We bought satin sheets for Kathy's bed. They did the trick.

There are numerous hospice organizations, each of which has it's own rules and guidelines. Find the right one for your PALS before you need it. Kathy died in the hospital because the hospice we chose didn't allow the bi-pap machine. We were trying to find an appropriate organization when she had her final crisis and it was a nightmare. Plan ahead. Ask questions. Bi-pap is not always considered a life extending measure FYI. In her case it was necessary to keep her comfortable.

No one will come to visit. This is the saddest of all. My PALS had a huge community of friends--many of them nurses--who disappeared after diagnosis.
 

Narrowminded

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Tillie - I did get the rip stop nylon. I had my DS lay down on the floor on 2 layers and I attempted to move him. Didn't budge. He is much heavier than Brian. Had my daughter try it, much lighter and it just pull out from under her. So, I didn't try them on Brian. I did more internet trawling and found something that one of the FAQ's was what is different about it and a plastic garbage bag? Ok, my mind started to spin, out I went to the garage and grabbed a Contractor weight Lawn bag. It works. However, due to it being plastic, I can't leave it there. Still thinking.

However, the meeting I had with the ALSA gal, she is going to send the OT out (knew one who is supposedly great) and we will see what she comes up with.

Hugs,

Sue
 

affected

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Sounds like your technique Sue, dang...
 

Diane H

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One alternative to a SlipperySally is bed pad with a plastic underside for sliding and a quilted top for a soft, absorbent pad that can be left underneath the person all the time. These are sold as washable, reusable incontinence pads but are great as turning pads/draw sheets. I have some that are several years old and, in spite of my excessive weight : -( , haven't pulled apart.
 

Manhattanite

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Yes Loverly what is it with people not visiting? My PALS' family has all but disappeared, except for his sister. He was close with his cousins but not one of them has visited or even asked me if they could help with anything. Of all his friends only a handful have visited or offered help. It is baffling.
 

Narrowminded

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Diane - we have those underpads but the don't slide very well. Part of the issue is I'm only 5'1 and he's 6'2 so from the side doesn't work and if I reach from the head of the bed, I can't reach the pad to pull on it, it's too far down the bed. :( What I may do is make some with the plastic bag as the base, then add batting and fabric on top.

Loverly - we suffer from the same issue, most people don't come by, his friends nor mine.
 

Loverly

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Diane - we have those underpads but the don't slide very well. Part of the issue is I'm only 5'1 and he's 6'2 so from the side doesn't work and if I reach from the head of the bed, I can't reach the pad to pull on it, it's too far down the bed. :( What I may do is make some with the plastic bag as the base, then add batting and fabric on top.

Loverly - we suffer from the same issue, most people don't come by, his friends nor mine.

I did two "moves" when i didn't have anyone to help move Kathy up the bed.
Both only work with a satin sheet on the bed (a satin pillowcase can also help reduce hair breakage if that becomes a problem).

I would stand at the foot of the bed and hold her feet push-up style with her knees bent and she would slide herself up the bed by extending her legs.

When she was unable to push herself I was sometimes able to grasp her feet and push her plank style up the bed.
 

affected

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I'm hoping these will help, I do think you need the exact right material too.

Loverly there are you tube videos of doing that move with slippery sally sheets :) Sue's husband however can't move at all.

Sue firstly how to put the slide sheet in and out without rolling your PALS at all.

https://www.youtube.com/watch?v=p8uLl-G2xh0&ab_channel=tollos

These are using 2 people, but there are some great tips again for not rolling
http://www.tollos.com/index.php/videos/instructional-videos/lateral-transfer-videos

If you are trying to move him up the bed, if it is possible to bend his knees and bring his feet closer to his body, use pillows to wedge if you need to, then pull up with the slide sheet you may find it's the weight of his legs dragging that is causing the most grief.
 
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Narrowminded

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Tillie - yes that's how I put the plastic bag in, however that really sounds like ripstop nylon. What I did notice was that they used the draw sheet, not the sally to do the moving. I will have to try that method with what I bought.

As to Brian's legs, they are already proped up on pillows, sometimes higher than others. I think it's his trunk that gives me the most grief for whatever reason, maybe because it's just so long. His legs are like jello, I would never be able to use them to do anything. The good thing is no contractures, the bad thing is they are a pain when moving because they just flop about.

I'm going to give it another go with DD as a test subject using a draw sheet and the nylon I bought and what that does. If that works, then I will have her help me get the draw sheet on.

Once I get this figured out, I will definitely start a post.

Hugs,

Sue
 
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