Miss my husband. Who is this angry guy?

[Pkmado]

My husband has just had to sell his beloved truck. I know not driving is huge. He has not driven for 6 months. He has been so difficult. This Makes me cry which makes him even more mad. I still need to work his arms and it seems impossible to move him and myself out of this situation. Any suggestions?
We are a year and a half into this. He still can walk but his arms are gone although his fingers work. He is hoping to be approved for a vehicle with a joystick but I am not sure he will qualify.
Really I just need any helpful suggestions to move out of a hole. I am stumped.

 

[Ms. Pie]

Get your Neuro to order counseling for you both. I'm sorry it's so hard for you Sweets. I think my husband would be the same way as you husband. Hugs to you!

 

[Barbie]

Hi Pk,

I hate to say it, but do not waste your money on a vehicle he can drive. by the time you get it, he will not be able to use it. Once he is in a PWC, you will need an accessible van to transport him and they are expensive.

It is really tough to give up driving it is such a symbol of freedom and self reliance.

My husband lost his arms first and it was awful. he was stumbling around and his voice was also going, but the arms --oh my--to not even be able to scratch an itch. if your husband get s mad when you cry--then you need to cry in private. he is already dealing with so much. I cried a lot in the beginning--usually in my car on the way to work and the way home. I would just scream some times full blast. sometimes I had to pull over because the tears made it hard to see! He never saw me cry much because my commute was my "crying time". I also started taking anti depressants because I was so sad all the time. being a cals and knowing that soon you will be a widow is overwhelming. the anit depressants really make me feel better, so I know I am a better caregiver. I can laugh and joke around again with him. I am sure your husband just wants to be treated like the man he is in his heart--which is the same man he always was just not disabled. I don't cry anymore which is great, because I can handle the stress and demands better.
Talk to your doctor--remember that you need to also take care of you...

all my best,

B

 

[Pkmado]

Thanks so much for your reply. I have been following the the
Forums for awhile and am just beginning to reach out.I have noticed you are always around to give many people advice. Comforting to know someone whose spouse has similar symptoms. I am hoping Phil will fail the test for a vehicle with a joystick. I don't encourage him but don't have it in my heart to discourage it. Phil is still struggling to feed himself. He is getting so much better at coming to Terms with his short comings. The next big one will be me feeding him. His arms are gone but his fingers still work. He loves beer so this works in his favor for maintaining his weight along with Ensure. When he is no longer able to eat will be a major pitfall. I know you have already been through all this. Of course I am hoping like most Cals who so love their spouse for the longest outcome, which is selfish and loving all at the same time.
He feels faciculations in his legs maybe once a week. He coughs much more than before. I keep embracing the idea that this is moving slow.
Do you mind my asking how is your husband doing? Both of you have been at it a long time. I have read many books, memoirs and biographys but most seem to start out in a wheelchair. Those who survive the longest usually are younger to start. Phil is 63 and I am 60. Phil has a daughter who is 27 who I so wish she would call more. The is simplest call can mean so much. It seems you have a lovely family.

We really do well for ourselves. I have no right to complain. I usually control my tears for walking the dogs. For the most part were still In A fair place and I do know the worst is yet to come. We have wonderful neighbors and friends. I am also lucky my spouse is a kind and appreciative man. I know it is only normal for him to have frustrations. He is a Veteran. Which is a good thing for us financially. But if this is where he came Into contact that triggered his ALS than not so fortunate . It is so nice to have place to vent and hear from others who get it all.
We will attend our first support group next month. Since Phil is still walking I am not sure if he is ready to see persons far advanced. He is a big boy so I know he can handle it. Persons on our "Team" have said that support groups are not for everybody but we need to at least see if it is something we can benefit from. It will be nice to know others personally in our area facing the same challenges.I am pretty much the gate keeper. I keep myself educated and informed and ease him into the next phase and try to emotionally prepare him. This works for us so far.
The very best to you and your family. So kind of you to guide others through this terrible disease. We need all the help we can get. Thank you so much for taking the time.

 

[Barbie]

Hi PK,

My husband tried very hard to drive and care for himself for a very long time--about a year after his diagnosis. he really drove for too long honestly. We almost had an accident with the kids in the car--and that is what got him to stop. I remember when my husband was first sick--it was such a struggle when he would try to feed himself. he would stand at the counter and bend over so he could shovel the food into his mouth, since he could not lift his arm. I can not remember when I started to puree his food and feed him--a much safer option. he still eats by mouth--no peg tube for him but everything is pureed and I have to be very careful. He has been in a PWC since 2009--and his progression has seemed to slow down the last couple of years. Honestly, the reaction many have when they see him is that he only has a few months left, but people have been saying that for 2 years. He refuses peg and a bipap, but has no problems accepting help for all his daily care. He has a very good attitude--that took a while. Once he decided to live with ALS ...

You just never know how long someone has...So come here and are gone in a few months, some are here for a long time. I never thought my husband would still be here after 6 years. all the doctors told us the standard "3-5 years". All you can do is face each day and each change and do your best. He is lucky to have such a loving wife!

B

PS--send his daughter an email--tell her she needs to email him or call him regularly--be honest with her about the prognosis for ALS. if she doesn't take your advice, then she will regret it not you.

 

[SMP51]

I like that Barbie, 'living with ALS' ....that is the only way to stay sane!

PK our eldest son lives far away and a call from him always means the world. I know he means well but his life is busy.
I simply text him and say 'call your dad, he needs to hear from you'... and he does, sometimes they just need a reminder nudge

 

[milanumpa]

My husband has been angry and down right mean. He has lost all use of his arms. I am the only he will talk to and he has a family from overseas. When one came to visit she spent the whole time shopping. And I waited on her. I,ts so bad I wish it was me with the disease. 2failed back surgeries. Quit work to care for him. I'm sorry to say but this world is hell to me right now. I feel for you and everyone on this board. Sorry . Mila

 

[pearshoot]

when you say his arms are gone is there any horizontal movement right and left, if so there is a hand arm brace with insert in palm to place spoon, a small bowl with vertical sides and rubber around bottom to keep it from sliding, cut food in small pieces both are inexpensive then try shoveling

 

[PennyX]

Barbie, my husband is also losing use of his arms and hands, and I am scared for him. I panic when I think how he won't be able to eat, blow his nose, etc. So far, he is still able to drive and do limited things, but I know what's coming since I've been reading these forums.

Like you, PK, I am afraid of an accident. Even though my husband is still driving limited distances, an accident may be awaiting him, and I hope he has the sense to know when it is time to stop, without a wreck to prove it to him. He is holding onto that ability as long as possible because he/we take care of his 90 yr old mother, who still lives on her own.

So far though, he is in pretty good spirits most of the time, which amazes me. I was also crying my eyes out for the first month (never around him though). I decided I needed help in the form of medication, and the doctor gave me an anti depressant also. It has really helped, and I can think so much more clearly and rationally now.

Pearshoot, I'd like to see those things you were talking about, where did you find them?
Just for future reference.

Mila, I also plan on quitting my job to care for him when the time comes that he loses all use of his arms. What do you do about healthcare?

 

[milanumpa]

He can only use his hands a little bit. No horizontal or any movement in arms. Als is woefully deficient at any helpfu stuff. Thanks mia

 

[milanumpa]

Right now I have cobra for 18 months then?

 

[affected]

I can so identify with so many of the posts in this thread, and feel for all of you that are going through all these things.

Both myself and my PAL feel very angry at the unfairness of this disease, but he will take it out on me at times and the nasty spitefulness can really shock me. Usually it starts over something so small, but is obviously a release of so much that was building up.

My PAL is also losing his hands and arms bit by bit, and has all the bulbar problems as well and it is so frightening. We do actually talk about everything quite a lot, and he seems to be coping better than I am, until one of the sudden storms that breaks. I'm always left wondering what does he *really* think of me because when we talk calmly he says such lovely things, then when he lashes out verbally it couldn't be more opposite.

I am concerned about him driving too, but I hope he can manage it for a while yet as that also scares me. He doesn't go out too often on his own, but the fact that he *can* is so important for his independence, and I know it will bring another wave of anger when he loses that. It doesn't really matter I think that you know these things are all inevitable, every loss is another wave of grief to go through when it comes.

It does help to know that people here know what you mean when you just say something about your day!