Any other primary caregivers to their spouse?

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hope_faith

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May 27, 2009
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Loved one DX
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FL
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Fort Myers
Hello. I was just wondering how many caregivers are here who are the primary caregivers of their spouse? My husband was diagnosed with ALS in Jan of this year. I am wanting to meet some other people who are in my situation.

I went to my Dr. this morning for my annual physical and I was telling him about my husband's diagnosed and I just completely broke down. It just came out of nowhere. I think it's time I meet/talk to some other people who are in the same boat as me.

Thanks...
 
Welcome hope faith!

Very sorry about your husband!

I did the same thing at my doc's office couple of years ago. I hope the doc gave you some antidepressants to help you out!

My husband was diagnosed 09/06, but had noticeable symptoms in 05. For some reason, it seems his progression has sped up these past several months.

Please feel free to ask any questions you may have. There is a search button up top if you would like to find posts about a certain subject.

Wish you and your husband luck!
 
Hello. Welcome to the forum. My partner has been diagnosed back in November 2008, with symptoms running for about one year prior to that. I am 36, partner 42. We both felt devastated once we learned that he had ALS. I sought counselling which helped me deal with the shock of his diagnosis. Sadness and loss are here to stay. Oh, something called 'survivor's guilt' has also been mentioned.

What you are feeling is normal, for our circumstances. Feel free to write about your feelings and concerns here, or send a private message if you wish.

All the best, Dani
 
Hi, hope_faith-

My husband was diagnosed last year. What you are feeling is what we all go thru. It IS overwhelming at first.

Are you attending an ALS clinic? If it is ALSA or MDA associated, there are probably counselors there that you will meet with on your visits and help with coping strategies.

You might also check for support groups thru these associations. We have a very active ALSA chapter; there are sessions held at various times throughtout the year on different topics.

For instance, they just had one pertaining to mobility issues- the PT & OT were there to explain various issues and equipment. Lots of questions taken and answered.
We went to one in March, which was "Newly Diagnosed"- just an introduction to what was available thru the chapter, lots of info, pamphlets etc.

But, what is good about these sessions (besides the info) is to meet others in the same situation as you, and make connections,- exchange phone# and email addresses if you want. Family & friends are great, but sometimes you do need to talk to someone who is experiencing the same emotions and challenges.

And last, but not least, this forum is great for getting info on the "day-to-day" stuff as well as lots of general issues. You will find "soup-to-nuts" here! (I'm not naming names!) These are some of the best people to talk to- and listen to!

I wish you well-
mare
 
Hello. I was just wondering how many caregivers are here who are the primary caregivers of their spouse? My husband was diagnosed with ALS in Jan of this year. I am wanting to meet some other people who are in my situation.

I went to my Dr. this morning for my annual physical and I was telling him about my husband's diagnosed and I just completely broke down. It just came out of nowhere. I think it's time I meet/talk to some other people who are in the same boat as me.

Thanks...

Hi hope_faith................I am in the same boat as you are, the only difference is that my husband is Diabetic, and not Als! However.....................I lost my first born to Als 2 yrs. ago today. I took care of my son, he passed, now my husband is down (but with a different illness), and I am trying my damnedest to keep my posts sort of low key, because they are not Als related. I just don't want to cause any problems, because to me it is off topic. I still read these posts, and rarely post, like today it's his ann'y, and I just had to do something to keep his memory alive. God bless everyone!

Irma
 
My father is the primary caregiver for my mother who was diagnosed Feb 2008. He is a minister and it has taken his faith to get him through it. Everyday the whole family pulls from our faith and it does get us through. Loving them through this disease is trying at times. Especially when she wants to fight everything we are trying to help to ease her pain and suffering.
 
We never mind you coming to tell us how things are going Irma. We feel your sadness too.

AL.
 
Thank you all for your replies! I really appreciate the warm welcome. Thanks for all the great info too.

Mare- to answer your question, we haven't been to an ALS clinic. I'm not even sure if there is one in our area. My husband did speak with someone today from the MDA in Sarasota, I believe, and she is going to be mailing him some forms to fill out to get registered with MDA. I'm sure once he gets registered, we will start to get more info about what kind of help is available to him/us. He also has an appt with an ALS specialist over in Miami coming up soon. I'm sure he could give us some info as well.
 
Dear Hope Faith,

Hello, and welcome. Like jimercat.. my husband was DX in the fall of '06. We have 3 kids and we are both now 35 yrs old. The first couple of months are the worst! After awhile you begin to accept and adjust. Once you both get to that point things seem to be easier to look at from an objective point of view. Look to the things you will need for the care of your PALS.


Again.. like jimercat.. the last couple of months there seems to be a faster progression than we have experienced for awhile. We are hoping that things slow down again..but , as with all PALS there is no base line of progression.


Good luck...All the people haere a wonderful and understanding. They give advise and care with equal enthusiasum. Yours in Faith!..cris
 
Hi There Hope Faith, so very glad you found us. I am primary carer for my hubby, he was diagnosed in October of 2008, and like several people on here it seems his progression has sped up of late. Look for your local ALSA. Our ALSA representative is Awesome, not only does she help us out as far as equipment from the loan closet, she genuinely cares about both of us. She takes the time to call me if she thinks I am feeling overwhelmed. Good Luck, come back and update us
 
caregiver

This forum is awesome for getting info on ALS and for communicating with other caregivers. My husband has the PMA class of ALS, cannot use arms, neck hangs with use of neck brace and his diaphram is shot, so he is on bipap 24/7. When he was initially diagnosed 2006/2007, I was obsessed with gathering as much clinical data and information on ALS. That was my main focus. I stuffed alot inside and only cried when alone, in the shower etc. I never felt the need for "myself" for anti-depressants as I know why I am sad, why I cry and feel it is healthy for "me" to cry and to get comfort from my loved ones, gal friends, etc. This is by far (I work in medical field) the most dreadest of all diseases, no treatment, no cure. But......with that said, I have a great faith that we will see a cure/treatment for ALS in our lifetime. We have to keep hoping and living and not giving up.

I have made many female caregiver connections on the forum and we private message one another just to check in. We are all here for one another. Don't hesitate to reach out.

Patty :p
 
Hello Hope Faith..
I am also the primary..and only caregiver for my husband. He is totally dependent for all of his daily living needs on my. I can manage the phsycial aspects...but the emotional aspect is what breaks my heart on a daily basis. I cried every day for the first year. Now..there is no time for crying...I have to be strong for my hubby and boys. If you ever want to chat .....I am on the forum almost every night.
 
Hi ... I'm primary caregiver for my husband, who has Parkinson's and other problems. I'm the one with ALS, but he's in worse shape than I am, so fortunately I am still able to physically help him and manage things (for how long, I don't know). Right now he's fighting kidney failure (not part of Parkinson's) and is bedridden, unable to sit up most of the time.

We had an emergency two weeks ago when he fell in the bathroom blocking the door, and I couldn't get to him. Used my "medic alert" button for first time and paramedics arrived in 10 minutes and got him to the ER. They kept him for 4 days because he is so debilitated. His kidneys are right now at the point where they need to consider dialysis or transplant ... I don't think he could survive a transplant, and I don't think they'd put him on the list because of his Parkinson's ... but perhaps urologists can stent around his kidneys, which are blocked. We'll know Friday what's in store.

I have a caregiver 5 afternoons a week, thanks to long term insurance and what's left of our savings, and she is making all the difference. I can't push him in his wheelchair anymore with my arms, but can if I stand pressing against the back, and push the chair with my right leg. We side-step through the house at a snail's pace. I'm not supposed to try to push him according to my neuro, but life goes on, ALS or no ALS. We have to do what's before us to do.

I get a lot of information from this part of the forum and identify with both caregivers and caregetters laments. He refuses to eat (he is so sick, I understand completely how he feels about food), and I seem to spend half the day coaxing him to get his supplements down. I get angry and sad alternately (or together), and find myself using the self-pity card with him sometimes ... ("You know, I'm not feeling so hot myself, so drink the freakin' Ensure so I can go lie down.") I've solved the appetite issue partly by giving him about 4 oz of supplement every hour. He can manage that.

Hopefully, if his kidneys improve, his appetite will improve. If it doesn't, then we'll probably go for a feeding tube for him, too, which is fine, as I'm a pro with that now.

Seeing Parkinson's up close has been a good reality check on ALS. ALS is a nasty, nasty disease, but there are other neurological conditions that are really nasty too. I believe that all caregivers should go directly to Heaven, do not pass Go, do not collect $200. I include myself in that crowd.
 
Beth, my heart goes out to you. You have so much strength and never cease to amaze me. I hope that your husband's condition improves! I will be praying for you both especially on Friday when you know what course of action to take.

Beth, you definitely should include yourself in the group of caregivers who go directly to heaven. In fact I suspect you will be elected president of heaven once you get there... a long way down the road.

BIG BIG HUGS!
 
I'm so glad I found this forum! Thank you all again for your replies and sharing your stories with me. It really means a lot to me to know I'm not alone in this and there are others who are dealing with the same thing. I will do my best to offer support to any of you fine people when I can.

Let me give you a little history of my family. I'm married to my wonderful husband for 25 years. We have one son, he is going to be 21 on June 22. My son has many challenges himself. He has severe Autism and has in the last 3 years been diagnosed with Bipolar Disorder. He is non-verbal. I don't know how much you all know about Autism, but it is a spectrum disorder and you can have individuals that range from really high functioning ( Asperger's) to very severe, low functioning. My son, unfortunately is on the severe end. So, I'm also a full time caregiver for my son, and now I will be for my husband, diagnosed with ALS in Jan 09.

I work part time as a hair stylist. I'm only working one day a week and I'm not sure how much longer I can do that. I can't leave my husband with my son alone for very long due to him not being able to handle him anymore. I'm just playing it by ear. Luckily, my boss has been very supportive with my situation with my son and now with my husband.

So, that's just a little of my story. I look forward to coming here and getting to know you all better.

God Bless you all~
 
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