New around here and have some questions.

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Crabbyswife

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CALS
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Winter Haven
New around here.My husband was diagnosed 8/2014. I'm his caretaker and also for our 14 year old autistic son. I'm curious does anyone else feel alone and overwhelmed? How is everyone dealing with this? I don't feel supported by our families/friends. (Challenging all 110 to ice bucket and not a single one did it) They just ignore me and our son.I'm frustrated. When does the anger stop? I watch my husband decline and everything just hurts me so much. Does anyone else feel this way?
 

gooseberry

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Crabbyswife, our situations are quite similar. My husband was diagnosed in May 2014 and my 13 year old son has autism and adhd.

For probably the first six months we had very little support. One brother in law stepped up but he lives a thousand miles away. Now both brothers help as much as they can or when I call to ask for help. My father in law at 83 will round up a posse to help.

It takes time for the family to help. They have no clue what you are going through and frankly in our case most simply can't deal with it. Luckily, from time to time, we get surprised and someone from my work, a neighbor, or friend will take.my son and spoil him for a.day. If at all possible, try to get counseling for your son, it really helps to.deal with the emotions. Also, if a church member or friend can stay with your hubby, try to make one on one time for your son. This helps my son immensely. It keeps.him.centered and minimizes behavior.
 

gooseberry

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The other thing is you have to figure out a way to live....to do the things you guys enjoyed as a family before diagnosis.n It is challenging but it is worth it because staying home being isolated is mentally crushing.

If your hubby is a vet there is a sticky at the top of the general discussion subforum that will help and many of us can also. You are among friends....people who understand what you are going through without explanation. Ask questions, rant and rave, offer support. This forum has saved me.
 

Atsugi

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New around here.My husband was diagnosed 8/2014. I'm his caretaker and also for our 14 year old autistic son. I'm curious does anyone else feel alone and overwhelmed? How is everyone dealing with this? I don't feel supported by our families/friends. (Challenging all 110 to ice bucket and not a single one did it) They just ignore me and our son.I'm frustrated. When does the anger stop? I watch my husband decline and everything just hurts me so much. Does anyone else feel this way?
This is what I learned while caring for my PALS:

First, we ALL feel as you do.

Sadly, friends and family very often abandon us because they're scared; don't know what to say or do. They don't have the courage to stand up to the disease because, frankly, it's not their problem. You're no longer relevant to their happiness and prosperity so they ignore you.

Now I'll say something a little weird, but bear with me. ALS is not your problem, either. It's your husband's problem. Your problem, your challenge, is to care for him and give him the best life--and the kindest death--possible. You're being exceptionally brave to take this on. Crabby doesn't have a choice, you do. Your choice, like mine and all the other dedicated CALS, makes us different, special. We can be in charge. We draw our strength from loving our PALS (although we might be tempted to pity them).

Our love for our PALS is only part of our strength. You'll need physical stamina to care for a paralyzed person 24/7. You'll also need a mental toughness to help you stay strong emotionally.

How does the anger go away? I learned to accept the fact that friends and family are merely mortals and this is not their problem. Let them go about their lives. By accepting this, your own anger will go away and you'll be better served. Forgive the friends who abandon you, and you'll be more calm as a result. That's what worked for me.

I hope you'll find some solace in my words. Some strength, too. Always feel free to vent here, about anything, anytime. Somebody will be here to empathize and guide you as needed, 24/7.

--Mike
 

Crabbyswife

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Joined
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Messages
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Reason
CALS
Diagnosis
08/2014
Country
US
State
Fl
City
Winter Haven
I thank you both for your kind words and insight. We live in Florida and all our family is in New Jersey. We are selling our home to move back there so I am the only able body to pack and organize. My husband wants to be around his family and I won't deprive him of that. It's hard because I hate to leave FL I love it here even though we are alone.I love my house. I love the weather. I love that I don't have to deal with his family constantly telling me how to live my life like they did when we lived in Jersey. His family either tells me how to live or completely ignores me that's how they are. I turn 35 tomorrow and I feel attacked on all fronts. I don't know what to do activities wise as a family because my hubby only lasts about a half hour before he's so tired he just passes out cold. He will be getting a feeding tube soon because of the choking and eating is terrible he gets tired and can only feed himself the first three minutes after that his arms are so tired he can't lift them. I'm not ashamed of him I'm proud really but he doesn't like to eat out cause people stare. If you have any suggestions on activities that would be great.I seem to have lost anything normal that we used to do. I love hubby ,I don't pity him. I want to make everything as easy as possible and comfortable for him. Your insight is so helpful. I cried when I read the messages cause I'm finally not alone.thank you so very much.
 

Atsugi

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You might try going to the movies; they have a wheelchair areas. At the movies, I was always secretly ready in case of choking problems or a visit to the ER. However, sitting still for two hours might be painful.
My PALS loved to eat out even though I fed her. I even attended to her in the lady's room. You might google "food delivery winter haven" so you don't have to cook.
We visited the theme parks. They were really well-prepared to handle wheelchairs.

I have moved A LOT. Box up and tape closed anything of value yourself, and be careful to check references when hiring packers and movers. Look up movers dot com for reviews.

Important: did Crabby serve in the military at all?
 

scaredwifetx

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Wise words as usual Mike. You always amaze me with your thoughts and advice. I can only hope to be 1/2 as strong as you have been.
 

lgelb

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No one cares if C falls asleep at a concert, theatre, museum, on a woodsy trail, in a garden, on a towpath (one of our favorite things in NJ), down the shore, at a destination event, etc. Bookmark whatever's happening at the closest convention center, library, museums, weird places like Northlandz, etc.

Admittedly, a few more issues if he snores irregularly. Though you're not there yet, know that when Larry was on 24/7 BiPAP, we still went out and there were times when the hall was absolutely silent except for his BiPAP. It's just white noise.

If you tell us where in Jersey you're going, I'll have more specific thoughts. But think of it as, what did he used to do, read, listen to, watch, visit, collect...?

Has your home already sold? Does your husband really understand your feelings? I can't believe he would be happier while you were unhappier, if that makes sense.

But if that's what it is, I would be always "doing something" in another room while the family members interacted (there will be a lot to do), and if they tried to run your life in front of you, I'd say "Well, I could do that, or I could just take care of [husband's name] as he becomes increasingly paralyzed and dies, the best way I know how."

As for friends/family who disappear, if they are people that C wants to see, I would tell them that straight up, and it's still their choice, just a point of information. If they're people that you want to see, same deal. If neither of you cares that much, their loss. And sometimes kids show more grace than their 'rents.

As for people staring, ask C if he's ever stared at someone, not meaning to and not maliciously, of course, in public. He will have to say yes. Then ask him if he thought that person should have stayed home.

Best,
Laurie
 

Crabbyswife

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Joined
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Messages
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CALS
Diagnosis
08/2014
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Fl
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Winter Haven
Atsugi: he was never in the military, he was a firefighter and we were both EMTs in NJ. We tried the movies and he couldn't sit that long.I've been trying to pack everything myself and it's overwhelming I'm going to check reviews for movers that is a great tip.lgelb:we're going to be going to the ocean county area that's where we used to live. Our home hasn't sold yet. He knows how I feel but I think he's just scared and his twin is there so he has that big connection. I get nervous I will hurt his families feelings and I know I need to try to learn to speak up for myself it's something that I'm trying to do but it's a hard skill for me to learn and apply. I'm going to try to see if I can engage him while cooking meals ,he gravitates to the bed cause it's where he is in the least amount of pain. He had a bad past three days only being awake about five hours total. I'm going to work on him getting comfortable with himself in public. You all are so full of priceless insight. This is honestly the most amazing resource. Thank you.
 

lgelb

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Why can't he sit that long? Is is discomfort in the chair or breathing? If breathing, is he on BiPAP, and if not, sounds like time to get one. If comfort, which I gather from your mention of pain, tell us what's hurting and we can probably suggest some improvements.
 

gooseberry

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I would contact your local alsa or mda society. They have wheelchairs, shower chairs, lifts to help you move him, walkers etc for you to borrow free of charge.

My birthday is August 13 crabbyswife. It just isnt the same but do something for. Buy flowers or takeout something.

The other thing I would say about family....keep a running list of things to be dine and put them to work. Let them mow, weed whack, run errands, grocery shop, anything to help.
 

Nuts

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I see some great advice below. As I read your comments I wonder if your husband has a properly fitting power chair. With one, he should be more comfortable in it than anywhere else, with the possible exception of an adjustable bed. If it's not comfortable, it needs to be adjusted.

We had dinner out with friends earlier this year, another PALS and his wife and daughter. We sat at a table on a sidewalk in DC for all the world to see and she fed him. Yes, it's tough on her to try to eat at the same time, but we had a wonderful time. Be bold and people with only look with admiration and smile. My husband is quick to respond to people he finds looking--he like to show off his chair, but then he's a ham.

You have your hands full and this journey is enough to challenge the toughest among us. Please stay with us, as you will, at least, get understanding and emotionall support here.
 

Crabbyswife

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Reason
CALS
Diagnosis
08/2014
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US
State
Fl
City
Winter Haven
He can't sit long because well he has lost the muscle and fat on his rear end and legs so he says it feels like his bones are on the seat. He gets the pressure wounds so easy when he's sitting. I move him and adjust him alot but it doesn't seem to help much comfort wise. I pack pillows everywhere around him that's how he lasts the half hour. He does have a bipap and hates to use it. Every time he does it exhausted him. The Neuro thinks it's setting might be to much for him.gooseberry happy birthday early! I love that idea of a running list if things to do. I currently try to do it all and I think that's got me overwhelmed a little. I actually did contact the ALS society to borrow resting hand splints. His hands are contracting. It's like the muscle everywhere is just disappearing. Does anyone know if this is normal , my husband Pat and I are curious? (He actually said to ask here is was surprised and happy it's his first time asking questions/help) Here goes. All day he can hardly move his arms and legs then he sleeps at night and says he has very active dreams that are very physical and he punches and kicks in the night and sometimes his whole body shakes like a seizure but his head will be completely still. Does this happen to others? This forum has been the best birthday present ever. Thank you everyone.
 

Atsugi

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My PALS Krissy also couldn't sit long because of her boney butt, so we got a ROHO air mattress type of seat for the PWC. I think they come in different sizes. Much better. It also helps to change the tilt setting frequently.

Keep on the pressure sores. Must be treated early because once they're open, they're really painful. Ask your doctor if there is something to clear them up quicker.

Hands contracting: This happens to some PALS. I think it's because the clenching muscles are stronger than the unclenching muscles, but I could be wrong. And yes, the hands muscles are, in fact, disappearing from view. That's because the unused muscles are "flattening out" instead of keeping their normal fit shape. This happens frequently in ALS and other diseases.

This hand atrophy is common. Muscles become totally relaxed and limp because their nerves aren't "feeding" them. The relaxed muscle is very different looking than a normal muscle. The arms and legs and face take on a visibly different shape when the muscle tone is lost.

I wish I could answer Pat's question about sleep, but my Krissy didn't do that. Others will pop in with their experiences, I'm sure.

--Mike
 

Barbie

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Hi Crabby wife welcome! you have gotten a lot of good advice from our resident crew. you sound so overwhelmed and I am sorry about your situation.

if you are definitely moving back up to NJ--be sure it is not going to be a nightmare up there as well. if the family is not supportive of you here, they may not be up there either. is there someone you can talk to up there--mom, dad, brother or sister of your pals? tell them what you need--be strong and don't be afraid to tell them you need help! tell them you need help packing and with the actual move it will be too much for you all alone with your husband and your son. the move in will be very rough also so who is stepping up? tell them you need daily help with husband and set up an account on lotsahelpinghandsdotcom or caringbridgedotcom. send that out to all. ask them if they cant give time themselves can they give money to pay for a caregiver to help you. dont' be shy--they are already ignoring the problem so you asking for money or help cant make anything worse!

the most important lesson I have taken from ALS is that I have to be a strong person--and I have surprised myself at the depth and level of the strength I have. That has been a positive in a sea of sh***, and I wish it for you and all the cals out there.

hugs to you
 
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