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[Amandagall5]

Hello. My husband was diagnosed with ALS in December 2012. He worked until Feb 2013 when he had to take a medical retirement. Now he is in a wheelchair and about the only movement he has is being able to turn his head a little. He is a veteran and I am his only caregiver. I do get help from Visiting Angels six days a week though. He has declined a feeding tube and although he can still swallow eats very little. He won't use a cpap, trilogy, cough assist or oxygen even though at his last breathing test his lung function was down to 30%. He's not very communicative except when it comes to his immediate needs such as adjusting him in the wheelchair, needing a drink, fixing his hat, scratching his nose etc.. These requests seem to come at least every couple of minutes and although I take care of them for him, I do get frustrated quite often with the frequency of them. Does anyone else feel like this or is it just me?
Thanks.

 

[Atsugi]

Hi Amanda, welcome to the forum. You've got quite a lot of work as his only caregiver, and it's tiring and sometimes frustrating. I know. My wife passed a few years ago. Being the spouse/caregiver of a paralyzed person was the most tiring job I ever had.

Is the VA taking good care of you? There are tremendous benefits available to veterans. See the sticky post at the top of the "General Discussion" subforum.

 

[affected]

Sorry to welcome you here.

It is totally exhausting as a CALS. Any help you can get, I would advise you to take. The better you can look after yourself, the better you can look after your husband.

 

[Gembead]

Hi Amanda, welcome...he may just need to have you close by. My hubby is still able to look after himself mostly as he is only 7 months post diagnosis so I have a long way to go yet. Please accept any help offered as this disease effects us physically , emotionally and spiritually not to mention how it can change our relationship.
Big hugs
Love Gem

 

[Amandagall5]

Thanks. I believe we have all of the VA benefits available, our house/bathroom has been remodeled, van, ramp etc so we are ok in that respect. He went to respite care for two weeks so I could visit my elderly mother (93) in England. That didn't go so well so won't be happening again. Next week we have an appointment at the VA hospital to see about hospice care.
Its just that I feel like I am angry all the time and sometimes I say things that are not so nice. I don't like doing it and vow to be better each day but often it comes out of nowhere. I could never have imagined that our lives would have turned out like this.

 

[Green Queen]

Amanda...did you get cross at him before the diagnosis? Did you vent...feel angry...say not nice things? He's still your husband, that same man as before when you did all those things, just...different.
This definitely is a process that will test your patience, but please don't forget that you are human and allowed to have feelings. You and your beloved are in this together and if you can get things off your chest that trouble you, good one you. Not everyone is brave enough to accept that bodily changes bring emotional change as well.
Have you considered medication for yourself? It's not giving in, it's acceptance.
You are in my prayers.
God bless, Janelle x

 

[MaxEidswick]

>Have you considered medication for yourself? It's not giving in, it's acceptance

Ditto that!

 

[affected]

Amanda thanks for being honest.

You are perfectly normal and are trying to cope with an extraordinary situation.

I used to feel like I was constantly screaming inside. I used 3 main strategies to stop that and to cope with being a CALS. You have to work out what suits you, so I'll give my experience to help you choose your own strategies.

1. Antidepressants - this truly stopped the screaming and my nose was above water again.

2. Counselling - this allowed me to say how I was felling and it was acknowledged, we would laugh heartily at me and discuss strategies I could use for my own self

3. Online peer support - so this forum and other CALS groups where I could work through all aspects of dealing with this disease.

I felt terribly isolated at first, so peer support became critical as no one in the family nor any of my friends had a clue what I was going through, let alone what my husband was.

 

[Amandagall5]

Thank you Tillie.
I do take antidepressants and I have one really good friend who I talk to regularly. She's very good with advice as she has had hard times herself in the past. I've only really felt this way since about February I think. Last week I increased the hours for the girl that helps me. Before that other than 10 hours a week, it was just me and him. I am grateful that we have the help from the VA, it would be even harder otherwise.

 

[MaxEidswick]

>I am grateful that we have the help from the VA, it would be even harder otherwise

Ditto that!

 

[GregK]

>I am grateful that we have the help from the VA, it would be even harder otherwise

Ditto that!

Double ditto!

But let's be clear: we have these benefits because the govt is pretty sure that our service gave us this disease, and not simply because we served.

This isn't an extra benefit, it's guilt.

 

[Barbie]

Welcome to the forum Amanda! your feelings are very valid and common. I know I do the same thing--and that is always a sign that I need a break! you a re only human, and constant demands on you even if they are legitimate are exhausting and make you feel you are less than a person. glad you are on anti depressants and have a close friend to vent with. that is what helps me. It was smart to up you aides--my husband is not a vet so I am not clear on the level of assistance you get from them, but if there is any way to get out for a weekend? I think you need a little more personal time. Or have the aides that you have coming in do more of the work for him, and give your self permission to just sit and relax or go shopping while they are there. I know when I turned over the bathing that was a huge help for me.
please, no matter what do not let the guilt get you. you are doing a remarkable job in very difficult circumstances. caring for someone's every need is probably the hardest job in the world.

 

[Amandagall5]

Thanks Barbie!
Funny you should say that about the bathing, I used to do it 5,days a week and had help the other two. Recently I changed that to having help 6 days and only doing it myself on Sundays. Just doing it one day a week made me wonder how I could have done otherwise! I think I will have to add a seventh day soon. I'm 58, not a weakling but starting to get back issues myself.

 

[cheerleader]

Welcome Amanda. Hopefully with the support of your daily helpers AND the people here going through the same thing, you will feel a bit less alone and ready to lose it. this is a tough road we caregivers walk- but know we are grateful (for some of us, past tense!) to have shared the journey with someone we love, despite the days of being utterly down! Good luck. Donna

 

[smoochiegal]

Amanda,
Welcome. These are some incredible people here. They love. They help. They get it.
come back often.
Cheryl