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Applesos, what a great idea! An added advantage is the chaos of remodeling will not impact you as much being a patio room. And my pals is very adverse to chaos around him! We have just completed getting bids on remodeling and I have some Good news for you! After working with a designer, adapted rooms can STILL be beautiful! We were concerned as well about lessening the value of our home, but that doesn't have to be the case. If you want to private message me, will share some ideas our designer suggested that were great! Donna

Donna, thanks. I'd love to learn about the ideas your designer suggested. I don't know how to "personal message" you. I'm new at this.
We have relatives who renovate homes for a living and I asked them to take a look at the patio and consider my idea. They weren't as keen on it as I am. They pointed out that we're going to have to get to pipes which are under the foundation in order to enlarge the guest bathroom into a wet room. They feel that rearranging the master bathroom would be easier. I'd have to see their design first. Also, we have pretty tight corners in our home, so I'd have to see how they'd accomodate that problem. One idea that I'm considering is installing a bidet. That might serve as a seat in the shower and take care of personal hygiene at the same time. Weird to be talking about these things, but I'm really trying to plan ahead.
 
Diane, thanks for taking the time to go through the things that worked, those that didn't, the ones you wish you had thought of, and the ones where your timing was a bit off. With the unpredictability of symptom progression, no caregiver is going to make the right decisions all of the time. What we can do is study experiences like yours and become more aware and ready for challenges. We're all going to win some and lose some, but we're going to do our gosh-darned best for our PALS. You've given us all wonderful advice!
 
It certainly does!
My PALS doesn't want to discuss what may come. He told me never to say the word "wheelchair" in his presence again. Regardless, I continue to try to plan on my own about what we may need to do.

I always thinking researching is good so you know what your options are.

However, may I share some of what I have experienced with my PALS? Usually changes that PALS have to make are depressing. The changes reflect that they are declining in some way and they are losing the ability to do the things that they love. My PALS is highly intelligent and very attuned to her body. She is being safe but is making changes when she is emotionally ready. I think people just look at the physical changes and don't realize what an emotional toll it takes for a PALS to accept the next "aid". Some PALS see it as failure, proof that they can no longer do something and are really sick.

I am my PALS caregiver. I want to keep her physically safe but I also want to protect her peace of mind. Yes, there are times when I want to go buy her something that will make her life easier. But if her mind isn't ready for the change, then it will just cause stress and unhappiness.

I don't think PALS are trying to be difficult. I think they are trying to stay positive and keep their fears at bay when they refuse to discuss change. They have to know that they have fought and not just given up.

What a thoughtful perspective! And you're right! I can see that my PALS is slowly getting used to his diagnosis and accepting it. He probably IS trying to keep his fears at bay when he refuses to discuss change. He's angry, frustrated, and he feels betrayed by his body. He wants there to be a "reason" that this has happened and there isn't one.
However, I also see that my blabbing to his friends and relatives has actually helped him to understand that the diagnosis is real. They obviously already know that he has ALS, so he can be honest, he doesn't have to hide the truth or make up bogus reasons for the changes that we all can see. To a great extent, that's liberating and allows him to discuss his ALS with friends, family, clinics, and the VA. Slowly but surely, he's beginning to be "proactive" about dealing with his disease. I think that our first visit to the ALS Clinic was very helpful; we both understand how to deal with his choking problem more effectively now. It's possible that, using a "grasping glove", he'll be able to hit some tennis balls again for awhile and that certainly brought a smile to his face.
Thanks very much for your insights on PALS; I will try hard not to "rush" things because I'm ready. Instead, I'll put more emphasis on sensing if he's ready.
 
Just read your last post, applesos, after I pm'd you. If you haven't already started applying for your VA grant for adaptive housing, do! It takes forever! We got the approval last February- and started follow through in August. Took a month to get the VA adaptive house agent out and there are many hoops to go through, including 3 bids on the work. Oh- something else to consider. Our agent said a wheelchair ruins carpeting, and to consider putting in laminate because it is sturdiest. Think we will be lucky if we get this done this year!
 
I am reading everything and trying to be prepared. My mom is still very active and mobile. It's just her voice and choking at this point. She is very set on NO feeding tube or anything she considers "life extending". This makes me fear her watching her choke to death. I don't know where it's going or how much to prepare. She may not get to a wheelchair. I'm not there full time. I live an hour away but I come two or three times a week. I am planning on spending more time after the first of the year. I just need to spend this time with her.
 
Hi... I just joined this forum and found your post.

I'm curious what kinds of answers you've found and what has been most helpful. I also appreciated all the good advice here.

Did you hook in to your local ALS society? Did you find agencies that could answer your questions? Lots of people have told us to "go slow" but my husband's disease has gone fast. One thing we did be sure to do was get our legal affairs in order. And we're trying to take care of any business we can that will be easier while he can talk. So far, though, his speech has happily been unaffected.

Hope you're finding the help you need.
 
Another difficult, but important thing to consider is whether you are willing and able to donate organs for ALS research. Even though he also has FTD, my husband said that he wanted to do anything he could to help find a cure, so he gave blood and spinal fluid, and agreed to donate body organs after death. He also has had genetic testing.

We are close to a major ALS research centre, so when I went to the funeral home to make arrangements, I told them about our donation plan. The funeral home contacted the research centre and found out exactly what information was needed and what the procedures were. Now, when the inevitable happens, the funeral home will deliver my husband for the donation, then return his body and continue with the arrangements. The research centre even offered to cover the costs of transportation, which were minimal. As hard as it is to discuss, I am so glad that something good can come out of this. It is all arranged, I just have to make one phone call to the funeral home. In the obituary, I will also be asking for donations to be made in my husband's name to the research department. I'm so glad that is done, as someone else mentioned, I can't imagine being in a fit state to think about these things when the inevitable happens.
 
This makes me fear her watching her choke to death.

Any hospice organization should be able to arrange for her proper care, either at home or in their own facility. There is absolutely no need for any kind of suffering toward the end.

My wife (RIP) was a doctor, and very knowledgeable about death. I prepared as much as possible so that when she was in her final hours, we all knew her wishes already. She wanted to die at home.

She refused all "life extension" treatments. She did not want any tubes, vents, hoses, or IV's. She did allow only a catheter so she could pee easily through that tiny tube into a bag beneath the bed.

In her final 2 days, as the CO2 built up and her breathing was insufficient to clear her lungs, she refused oxygen, and instead requested morphine. This relieved the "air hunger" feeling. It prevents a person from panicking. There was no choking, just quiet sleep. Eventually her heartbeat simply went away. It was all very calm and dignified.

For me, in-home hospice is the way to go.
 
sorry we seemed to miss answering this before, but the thread has come back up again.

Bulbar PALS actually rarely choke to death. This may only be a small comfort, but the truth is better to be able to prepare and cope I believe. Usually what instead happens is they have choking episodes and aspirate a little food or liquids. This then can't be coughed out as their breathing is compromised and a pneumonia results.

My Chris could have choking episodes that ran easily to half an hour. The final one he had took him 1.5 hours to finally clear his throat (he was eating puree). 2 days later he had a temperature and we went to hospital and they confirmed aspiration pneumonia. They did clear the pneumonia, but it was the beginning of the end for him, and he was gone 3 weeks later.

But his death was very calm and peaceful. He knew he was dying, and I gave him plenty of clonezepam and oxynorm and he was always comfortable and went very quietly in a loving environment.

I've also known PALS to have pneumonia and recover to go on for a long time after.
 
Tillie, the way you described Chris's death is my Joe's story- aspirated, couldn't clear his throat, ended up in the hospital - the only difference is they proceeded to put in the peg tube as it wasn't safe for him to eat orally, and that night he died in his sleep. It took 5 days after the aspiration! Can't help but think of the "what ifs". What if the peg tube had gone in earlier? What if I'd taken him to the hospital the first night (like I wanted to, and he said no!). But that is futile, so have to remind myself how much he hated the idea of the wheelchair, the peg tube, etc. and that now he is free and whole.
 
Cheerleader my friend - Chris had his peg for 6 months before he aspirated as he still was eating a little puree food twice a day. It was completely puree, he couldn't handle the tiniest lump. It was fed to him half a teaspoon at a time by me as he had no use of his arms.

He could swallow that amount kind of ok. He would normally start choking 10 -15 mins after eating because that last bit that had not cleared from that little pocket just in front of the epiglottis. That's what would always get him in trouble. The weakened muscles, and from early in his speech/swallow it was obvious on xray that his palate hung back way down in his throat.

So please don't play 'what if' with yourself.

Yes, you could have got the peg earlier, but you don't know that it would have 'saved him'.

I have to be stern with myself never to play 'what if'. We all did the best we could at the time with the information we had then. IIWII

hugs
 
I have to say you guys are heroes. You really stayed with your PALS and ensured their lives were the best they could be.
 
Donna, the doctors told me privately that my PALS would not live long enough to wait for us to modify a house. So although we were awarded the grants, did the interviews and had a couple of estimates, we never actually used the grants. We did get a disabled van, though. What a Godsend!

VA sent guys to install temporary ramps without using any grant moneys. It was in the prosthetics department budget.

Our sidewalk from the front door to the driveway was too narrow to be safe for the PWC, so I widened the sidewalk with concrete. That was quite a sweaty job.

Our landlady refused to allow modifications to her house, So I took a sledgehammer and widened our doorways anyway!

--Mike
Sledgehammer! I love it!
 
I echo the advice about staying a step ahead. Part of the challenge is that everyone progresses differently. We thought we'd have lots of time to prepare, but the disease has been moving aggressively, so we've been caught short.

First get connected with an ALS organization in your city if you have one. They will do a home assessment and give you a pretty good idea of some of the first steps. I would say bathroom is a priority — consider long-range toileting and showering implications. Grab bars for helping him get in and out of bed will be good in the short term. But keep in mind you'll eventually probably need a good hospital bed.

If you can get a loaner wheelchair and have options, get one that is motorized for independence allows for tilting to prevent swelling in the legs. As a caregiver, I also highly recommend getting training asap so you can be more affective with lift assists, what equipment is available, etc. If you have the resources for a ADA van and can find a good used one, snap it up! They can be hard to find.

And hone your nagging skills! These will be invaluable as you try to navigate the various government, insurance and medical bureaucracies.
 
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