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Grumpy'sWife

Distinguished member
Joined
Aug 18, 2014
Messages
153
Reason
Lost a loved one
Diagnosis
07/2014
Country
US
State
Ohio
City
Southern
Unfortunately Grumpy had a fall on Wednesday night. Thankfully nothing broken or strained according to the doctor. He has some pain in his right calf but nothing he will take meds for.
Honestly I am afraid. He seems to be losing all the strength in his right leg. He has so much atrophy on the left side of his body and I find myself staring at the right trying to gauge it as well. We are being super careful with transfers and he is spending more time in bed.

I think the fall made me crazy. The OT showed up the next day (no appointment, never calls, just shows up) and started telling him the next step was weight lifting for his arms and strengthening exercises, WTH? It wears him down when I do the ROM exercises on his left side. I said no, no weights. She said I am the one with the degree. My reply was "and I am the one throwing you out of the house". I requested a new OT so we shall see.

We meet with the VA on Tuesday and Grump wants a hospital bed. He can't turn himself at night anymore and can't get comfortable. Last night from 10 pm to 8 am, we turned 11 times, once with just 15 minutes in between. I think I will ask for a lift too. I don't know what else to do.

He also decided that he would get a feeding tube....but no vent. Is it wrong that I am thankful for that? Does that me a bad person, a bad wife? The kids are split 50/50 on it and the ones that want him to vent think I should convince him to do it. How can I do that?

Thank you for letting me vent and cry on your shoulders. Watching how fast this damn disease has taken control has me scared and feeling so alone.
~Kaye
 
First, sorry for what your going through.
Good for you for throwing the ot out. She obviously knows nothing about ALS. And they should never show up without an appointment. It should be on a fixed schedule so you know what day and time.
I don't think your a bad wife for being glad he doesn't want the vent. Maybe show the kids Deb's posts about it, (Santa Jo). Some do live fulfilling lives with one but it's still his decision.
 
" I said no, no weights. She said I am the one with the degree. My reply was "and I am the one throwing you out of the house".

good on you!

get his doc to prescribe something for sleep to help him through the night.

let the kids know it is his fight and his choice, you cant make him do anything, and some reading as suggest might be in order to help them understand, as they could be in denile of the realities their father understands and is facing
 
I am sorry. I third your firing the OT. It seems a knowledgeable about ALS homecare person is a rare bird ( we got a speech therapist once that knew what he was talking about) otherwise you get the ones who admit they don't know and will listen and research and then ones like your ot. I am sorry.
Go for the hospital bed. Better for both of you. From the VA you can probably get the ProBed ( freedom bed) definitely look into it. It is amazing.
Get a lift. Get whatever will help both of you keep Grumpy able to be up and about. Can you get another ot? Or go to one at the clinic and talk in detail about what you need to optimize life for you both?
Of course the vent or not is his choice and Don't blame yourself for being relieved. He is so lucky to have you to travel with him.
 
One thing we have learned, thru the school of hard knocks, with this disease is that as a caregiver you often know more about the disease than the medical professionals sent to work with you. If your clinic doesnt specifically recommend someone ask for a recommendation. Generally we have learned the services of most providers are almost useless if they dont know the disease and how it affects our pals. We have had to do a.lot of educating of medical professionals before they treat my husband so they do no harm.

The other thing that has happened with us is my husband doesnt like to tell me when things are changing. He thinks I will worry. Usually I have found out on a call with PVA or ALSA or at a doctors appointment. We had to have a long talk. I let him know I worried way more when I saw things, he wouldnt talk, and I didnt know how to help him. Its hard because they have to admit the body is failing in one area or they may not be able to do something and lose freedom. I told him it was a safety issue to me and I just wanted to help keep him safe so he didnt have more problems
 
Think you hit the nail on the head with that one. We really hate to admit that we've lost something else. I didn't want to admit that I needed help with showering, once I admitted that, I still didn't want to give in and let someone help me. It's hard because it represents loss of more freedom, not just with that one issue but life in general. What helped me is the realization that 'giving' in and accepting help means keeping my other freedoms longer. By being safe, I stay free longer. If you can get your hubby to at least read this maybe it will help him to accept the help he needs even though he might not really want it
P.S. I happen to also be my own care giver for the time being. Know that can't last but, iiwii
 
Oh Kaye, good for you to show such strength! Who sent that OT? you need to call and tell them that BS, because weight lifting to "rebuild Strength" is ridiculous and show her lack of continuing education on her client. you are not a bad person or wife to agree with his decision to not vent. you deserve an opinion, just as your kids do. but the kid that wants you to convince him otherwise, let him/her read some of the posts here by Santa Joe, and ask them if they are willing to sign on as dad's caregiver 24/7/365. Also, Grumpy is ultimately in charge of his decisions and no child should try to make them for him. (even an adult child!)
 
Kaye,

We, too, had to switch to a hospital bed. The ability to adjust head and feet was huge. It was not, however, the better of solutions until we got a low loss alternating air pressure mattress from the ALS loaner closet. Darcey is now sleeping through the night on most nights (or waking only once for some arm/leg movement). What a difference sleep can make on both of our attitudes! And if you can get a ProBed authorized, you'll really be doing the very best that can be done. You may even have to change the name from Grumpy to Smiley! :)

We also are using a lift. Because we needed portability, we got a Hoyer Advance 340... and love it (even though we had to buy that one out of pocket). We also hit the jackpot on our 3rd sling... a Liko HygieneVest HighBack. I would give up many of the conveniences we've acquired before giving up this amazing combination of lift and sling.

Well done, too, on recognizing that a "degree" doesn't make one all knowing and wise. Our experience with the typical OT person was that they had NO CLUE as to how ALS affects one's body. Same with most PT folks. And that is why we need to be as aware as possible, ourselves.

Your hubby is obviously being well cared for by you. You are to be commended. Pat yourself on the back for us. You absolutely deserve it!

Jim
 
Since you are involved with the VA I strongly suggest a probed, as it will turn him as often and as far as you would like automatically and give you a break as well. My husband has one, and the VA will cover it. I would look into it right away, Tim and I both love his, and I know that I wouldn't be able to keep turning him every 2 hours and look after him. It will save your back and allow you some sleep. There is also the ability to use verbal cues to mobilize the bed by your husband, and it can control any infra red appliance, as well as an alarm.

Paulette
 
Thank you everyone! We will definetely ask the VA about a ProBed. We looked them up online together and Grump was very much ok with it.
As for the OT, she is part of the local hospital after care program and was recommended by OSU when we left there. She will not be back and the VA will take it over on Tuesday anyway.
As for the kids who aren't happy, he sat them down and explained it again and told them that although he loves them very much it was his desicion and they needed to be a little more understanding. Then I read from the forum for about 30 minutes. Hopefully that worked but I don't know, one still hasn't been back or called. But Grump's son, who really worried me, was in tears and said to his dad that it was his choice and he understood! Small steps in the large battle!
I must tell you I thank God for this forum every day! You give me the strength and guidance I need!
Kaye
 
We also hit the jackpot on our 3rd sling... a Liko HygieneVest HighBack. I would give up many of the conveniences we've acquired before giving up this amazing combination of lift and sling.Jim

Jim, I got pretty excited about your sling choice after I looked it up. Almost hit the "buy" button before it entered my mind that it might not work with a feeding tube. :( I imagine it would put too much pressure on the tube site. I understand Darcy doesn't have a tube, but what would your best guess be about this? It sure looks like a dandy sling, leaving more access, but at the price, I'm not sure it would even work for Gary. He is still using a sit to stand lift, which has been wonderful compared to any hoyer or ceiling type set-up, but will "grow out of it" soon. Truth be told, he already is at the point where we should be using the hoyer, but he doesn't like to admit that a change is needed. I appreciate any insight you might offer!
 
Oh Kaye, I am so sorry.

I know to some degree what you are going through.

After Chris had his last bad fall (split head open, concussion, broken ribs, damaged shoulder and hip), and he still wanted to walk about using no walking aids or anyone with him, I called a 'family' meeting.

One had to attend by phone and the other 2 adult children came.

We discussed safety. Chris was adamant he would rather die doing something he wanted to do than rot in a bed. His 3 children had 3 different reactions to this, but at least we talked it out, each had their own chance to talk without being interrupted, and all could say how they felt.

In the end, we all agreed that he would do what he wanted no matter what we wanted or thought and we all understood this even if we didn't like it.

Funnily enough, over the next couple of days he actually started behaving better, and started using his walker finally. The fall did cause his progression to take off at a rate of knots, and he soon was unable to walk without assistance anyway.

For me, it was a relief that his children understood that I was only his CALS, and that anything could happen.

Different to your situation, but I felt some real similarities in dealing with firstly what your PALS wants, and then the reactions of the children.

I believe your children will find their own place of acceptance in this, even if it takes a little time for some of them.

I hope you can too, and I hope he will avoid falls now, they are so frightening and the way they speed everything up is just awful to watch.
 
Tillie - I hope they will be better about it but I don't know about one daughter(this is my daughter, but he raised her and walked her down the aisle). She is still not speaking to me and Lord knows how long it will be before she does. But honestly they just don't get it. They come in and out for few hours a week and still see their dad as he used not be physically not as he is now.
He has been transferring with a walker and my help but even with that he had the fall. It broke my heart because I just couldn't stop it. We are managing now by slide boarding but I know we can't keep this up. It seems like he has had this huge jump in progression in only a week! Is that possible? We went from doing transfers 6-8 times a day and now he can't manage one? We go to the VA tomorrow and I will take Nikki and Paulette's advice on a ProBed and Jim's on the lift.
He looked at me today as I was sitting him up in bed and smiled and said God you're still beautiful. That made my day. It's the little things that make it all worth it.....thats what counts and I know thats what I need to focus on!
Kaye
 
Dalvin, I read my Grumpy your post. He was very quiet for a few minutes. Then he said "if he can do it, I can do it". He promised he won't exaggerate how well he is walking and transferring when we see the VA tomorrow. I tell them one thing and he tells them another. Now hopefully we will be on the same page. The fact that you are your own caregiver touched us both. You must be so very strong and we have spoke of you often the past two days. He knows now that I want only wants best for him, not to take anything away from him.
From both us....thank you!
 
Good luck tomorrow! You 2 sound like a great team. Would Grumpy join here too? I long to meet him and I think others do too
Dalvin's words are so wise. I am glad Grumpy was able to hear them
 
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