Grateful (but not happy) to be here

[AZmujer]

Hello:

This is my first visit here, and I just wanted to introduce myself. I intend to explore the forums to look for help and advice.

My husband, 62, was diagnosed ALS in June — he was walking with a limp and had a weak left arm. Five months later he cannot walk, is wheelchair dependent and rapidly losing function of his arms. We knew when the diagnosis came we were in for an arduous journey but didn't expect the pace to be like this.

I know that everyone's journey is unique, but I am wondering if I should fasten my seatbelt a little tighter. The doctors keep talking about a "plateau" but it seems like a myth. And I'm terrified I won't be able to be help him. He's a big guy (though shrinking) and although I am strong and capable, I am smaller than he is. We have a good medical team and are connected to the ALS Society, and the advice has been "stay one step ahead but not too far ahead." But I already feel like I am constantly a step or two behind.

I've been to a couple of support groups, but found that 20 percent of the people did 80 percent of the talking (is this typical?). I couldn't get practical answers to my questions before the time was up. So glad to have found this resource with people who can truly understand what I am going through and maybe hold my hand a bit.

See you online.

 

[cheerleader]

DearAZmujer, all the practical answers to any question can be found here with these great people. My husband's progression had many plateaus- and months where he lost rapidly. We never saw a pattern, and tried to stay that step ahead. Everything takes longer than you hope for, so try to anticipate and get needed equipment early on. If he was a vet you will have many resources at hand, and if not, hopefully your medical team is part of an ALS clinic who can aide you in planning. Good luck and come back for the support, caring and ideas which will help make his life better. Donna

 

[affected]

AZmujer I'm so sorry you've joined the club no one wants to join. We will do our best to support you here.


Yes the 80-20 rule applies. I think meetings are fantastic, I couldn't really access any easily here. The one time I drove 2 hours to get to one I actually froze once a few people arrived, felt in a total panic, sat like a zombie and ran when it was over ... I never got back as they were only held every 2 months and by the next meeting my Chris was not safe to leave home alone and we didn't yet have much home help.

But here, you can start your own thread, ask a question, and it may take some hours or even a day or two, but you will get a heap of answers covering all ranges of experience. You can then pick what seems will work for your situation and feel in just a little bit of control and like you have gained some knowledge.

We are also really good a holding hands. I must say, everyone held my hand so tight when my Chris came to his final days, and it totally made the world of difference to me!

Some definitely do plateau, my Chris didn't, he was rapid progression, and he had FTD as well and made many bad decisions and had falls causing serious injuries that only sped things up more.

We do have a sticky here about anticipatory planning that may give you some of what you need, and it may raise more questions you want to ask, so give it a read and hopefully it will be some help.

I think fasten your seatbelt. I'd rather be prepared for a fast progression and be pleasantly surprised, than relax a bit and find myself in crisis. I often had equipment here weeks or months before he would use it, but when it was suddenly a 'must' it was here. Some stuff can take weeks to arrive, so holding back is never wise.

https://www.alsforums.com/forum/gen...cipatory-planning-trying-stay-step-ahead.html

 

[Barbie]

Hello! welcome to the forum! We are a good group for holding hands--I think you have found a great group of people who understand and will give you practical advice. It does sound like he is zipping along so you are right to think ahead, but it is common for all of us to be two steps behind. glad you already got your PWC, that is a big step. how is his breathing? do you have any help? be careful because you are right to be nervous if he is large--do not get hurt because that would be really awful! careful lifting and transfers to protect your back and him too.

I am quite petite, and my husband shrunk quite a bit so transfers are easier now for me. He use to weigh 195 lbs now only 118 lbs--less than me

no t everyone loses that much weight--some pals are able to keep it on.

 

[MaxEidswick]

>My husband, 62, was diagnosed ALS in June

if he is a vet you should contact the pva asap.

sorry tto see you here, but welcome.



Max - Wednesday, November 26, 2014 3:41:14 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Snowman78]

Welcome even though I wish you didn't need to join us. You will find more help here than you can even imagine. Everybody here is so helpful and caring. They have been wonderful for me and offered so much helpful advice when I just didn't know where else to turn. I second what Max said, IF HE IS A VETERAN PLEASE PLEASE PLEASE SEE YOUR LOCAL PVA REPRESENTATIVE THERE IS SOOOOOO MUCH HELP OUT THERE! I wish we had known sooner but they have been a huge help since we learned of the available benefits. Dad has definitely had many plateus. He is thought to be in the later stages but is hanging tough! My prayers are with you and your family as this awful disease effects everyone involved. Please watch your and protect your own health while helping him.

 

[lgelb]

AZ, it does sound like a rapid progression and I too would be skeptical of the plateau theory. With a Hoyer lift, you can lift and transfer him yourself (I and many others here were/are half my husband's weight) but I would definitely start looking at your home in terms of lift transfers -- if you are getting a lift from a loan closet, get it before the day your husband falls to the floor -- and see what, if anything, needs to/can be done to facilitate bathroom use, living room use, have you gotten a hospital bed yet?
Feel free to post all your most practical questions here!

 

[AZmujer]

Thank you everyone, for your kind comments, support and most of all, your help.

We are still navigating the bureaucratic process to get the PWC. Jamie is not a veteran, so there is no help there. He has been approved for SSDI, but we're still waiting on Medicare. It's this weird transition between Medicare and using our private insurance. Since we have met our deductible, we are trying to get it before the end of the year, but trying to get a hold of people to stay on top of the process is so frustrating. I really wish people could get one taste of what it is like for a PALS. Just a one-day taste, just to help them understand the sense of urgency we feel.

Night time, which used to be my reprieve, has become a huge challenge. Trying to get Jamie into bed, helping him get up or move his body several times a night, is taking a toll on us both. The other night he had a meltdown — a borderline panic attack. I felt so bad for him, and so helpless. Normally he has an awesome attitude, but I think when we are both tired (I just do not function very well without sleep) and it is night-time, you can start to feel so alone.

It seems like it might be time to investigate a hospital bed. I am hoping AALS will be able to provide a loaner. Otherwise, it will be another bureaucratic nightmare. We're also trying to get educated on what kind of home healthcare services might be available for us down the road. I don't think we need it right now, but it seems like we will in the near future.

We have taken care of legal issues — that was one of the first things we did. And for now, our hygiene/toileting routine working pretty well, although as I am sure you all know, that is time-consuming and can be exhausting.

One question: His feet are swelling badly, and because we don't have the PWC yet, elevating his feet is difficult (and apparently not recommended) unless he is prone. We ordered some compression socks. Anything else we might do to alleviate the swelling?

 

[Barbie]

Who said don't elevate his feet? I have never heard that! My pals puts his up several times a day and while they are slightly puffy not terrible. we use a urinal at night so no getting up. pals sleeps on his side and I just slide it up in place and then remove it. I roll my husband from one side to the other a couple of times a night, but you might look into putting an extra sheet under him that can be pulled and help roll him. I could not use it--could not grip it in the night after being asleep but that is just me.

lack of sleep is horrible and I face that daily. I get a 4 hour stretch and then a 2-3 hour stretch each night since getting his trilogy. before that it was every 2 hours... no advice on that from me. I have tried different pillows and air mattresses, and medications but nothing has been the magic bullet for a full nite's sleep.

 

[dalvin]

There is almost always a way to get the feet elevated. I sit at my computer desk and prop them on the desk, use pillows or cushions for padding

 

[affected]

Absolutely elevation for those feet.

Massage can really help too, especially before putting some compression socks on.

You are doing brilliantly in getting into the swing of this role. A hospital bed with an alternating air mattress may be a very wise choice.

The lack of sleep takes a huge toll on both parties. All I can say is nap whenever you can, don't feel bad for it, don't feel it is using up time you should be doing other things. I know that I tend to make more mistakes and take longer to do anything if I don't get enough sleep, so in fact taking a nap makes me more efficient.

 

[WMS10]

AZ, I will share a few of the things I learned along the way:

1. We ordered a hospital bed through my insurance company. Its the Cadillac of beds, the one you would find in an ICU. Our Primary Care Doctor helped with that. It was a very fast process. We went through Hill-Rom. They shipped it along with a person to assemble and show us how to use it. It rotates automatically, air adjusts to help alleviate pressure ulcers, etc.. HIGHLY recommend you do this right away. I invested alot of money in an adjustable bed from one of the mattress stores before we went to the hospital bed. Alot of money and unnecessary. (one more note on this - insurance companies are in favor of anything that will help prevent pressure ulcers, which can lead to long, expensive hospital stays -- another reason they approved the bed so quickly).

2. I completely understand your challenges at night. Those months where the disease is progressing are so hard, especially at bed time. When my wife had to start using a bi-pap, night time was horrible. I barely slept, so afraid the mask would slip off, or the machine would cut off, and at the time she could only move a few fingers. We would actually position a baby rattle under her hand and she would tap on it to wake me up (assuming I actually slept). We delayed the ventilator discussion for too long (not wanting to face it), and she ended up going into respiratory arrest one night, rushed to the ER, and placed on a vent. Looking back, we spent way too much time thinking "it's going to get better" and not wanting to face reality.

3. The physical part was tough, but I outweighed her by 100 lbs, so I could move her. Even so, certain tasks were still difficult. You really need to get a solid team in place. I ended up hiring 2 private duty nurses, each works 40-50 hours a week. I pay for them myself (yes, it's expensive). Hopefully you can get SS or Medicaid to help you. But you MUST have help, the sooner the better.

Just my thoughts. Hope this helps.

 

[Diane H]

One question: His feet are swelling badly, and because we don't have the PWC yet, elevating his feet is difficult (and apparently not recommended) unless he is prone. We ordered some compression socks. Anything else we might do to alleviate the swelling?

I fear I may have given the impression on my website that elevating the feet has to be done only when lying down. Although that is the most effective way to reduce swelling, any elevation is better than none. It is just that being bent at the hips to sit up makes blood return harder and so is considerably less effective. I stand by my "don't use a recliner" recommendation though. Unless your recliner has full leg support, all the weight of the legs is on the calves and impedes blood flow. Looks like I need to work on http://www.alsfrombothsides.org/swelling.html to correct the impression given!

 

[AZmujer]

Thanks for your advice, WSM10. Especially about the bed. We have contacted the specialist on the clinical team about the bed, but hadn't thought about going through our PCP. That might be easier.

Can you tell me the time frame from the time you got the prescription until the time you got the bed? Is your wife on Medicare?

As for breathing, you raise some important and interesting issues. Right now, Jamie's breathing is fine. He has no loss of function there, and can still talk fine. However, we've learned not to take anything for granted. I feel certain he will avail himself of the bipap when it comes time, but he is adamant about not wanting to be vented. He has a medical directive to that effect. So if there is a respiratory arrest and someone ends up in a hospital, do they automatically vent? Or do they pressure you to vent? Would you recommend taking the medical directive to the hospital if you have to go? (This is one of my nightmare scenarios. He also says he does not want a feeding tube.)

What do the private duty nurses do, and when did you make the decision to use them? I'm curious whether you investigated hospice services?

 

[affected]

I think you need to talk with your PALS about what HE wants done in the event of a respiratory arrest and get this written into the health directive.

The health directives here in Australia cover all kinds of circumstances so you can set pretty clear directives.

If he does not want to vent or have a peg, then you can respect this, but covering emergencies when hospitals suddenly are called in on the situation to save a life can mean sudden decisions in a highly stressful moment. That's where covering this in the directive now can make it easy to know your decisions if something does happen suddenly.