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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hi All,

I have been a member of this forum for several years and rarely post because...i don't even know why...but I do read and take so much good away from other posts. I feel like I know people who post alot, just from reading the forums and it makes me sad to see so many of the ones who were here when my husband was first diagnosed passed. So now I have this urge to post my story maybe before it is too late.

My husband was diagnosed in January of 2007. He had been having symptoms for a couple of years but had hidden them from me because he didn't understand them. I had noticed his speech was slurred in the fall of 2006, and saw fasiculations in his arms and noticed that his shoulders were stiff and his walk was stiff. in December, 2006 I mentioned it to him and told him make an appointment with the doctor for a checkup after christmas--and I guess i scared the crap out of him because he collapsed in what I thought was a stroke! It was a weird start to this disease, but within a month he had a diagnosis. The Neuro we saw had bad bedside manner to say the least. He examined my husband for about 15 minutes, then said you have ALS and maybe 3 bad years to live. go get your afffairs in order. no referral to an ALS clinic, no suggestions on therapy, nothing. When I asked him for the name of a support group, he told me to look on line. We could not accept it, and did not tell anyone. we told everyone he had Lyme disease because that is what we wanted it to be and never went back to him. He progressed (degressed really) fairly quickly I think at that point. He stopped working within a month because of emotional issues, was falling constantly and completely withdrew from friends and family. We tried the aggressive lyme treatments for a year, (won't even go into what a crock that is) while he continued to decline from walking to a scooter, barely able to move his arms and lost 50 lbs. At our one year anniversay, I convinced him that we go to the Mayo Clinic in Jax, and they confirmed the diagnosis and were so much more helpful. Telling the kids (4 of them) was tough and something I had to do by myself because of his emotional Liabilty.

So here we are, 4 1/2 years later. He is in a power wheel chair now since year 2. no movement at all in the arms, minimal use of his legs for transfers only, difficult speech. I puree all his food but he still eats and doesnt want a jpeg. We go to the Tampa ALS clinic now, since Mayo is quite far from Orlando.

His emotions are under control now with drugs-- which is the biggest thing. I am his only caregiver because he doesnt like anyone else to touch him, and we don't have any family that cares anyway. I get him in and out of bed, feed him, bathe him, toliet him, wipe his face get him drinks, itch his nose etc etc you guys know the drill. I also am responsible for the 3 kids that still live at home, taking care of everything in our house, and running our family owned business--24/7/365.

I am exhausted to say the least and so very sad.

We had a great and strong marriage and he was my best friend. now I feel like an employee and not a wife. I can't talk to him about that because he can't really accept it. Thanks to ALS and the recession, I can't afford an outside caregiver to help--we are on the verge of losing our house and our business.

We don't go tothe ALS clinic very often--becasue his progression has really slowed down and it is as if he has plateaued for the last year. he hates to go anyway--all they do is mark the progression. we have all the other equipemnt that we need and all the drugs that we need at this time. they recommended a bi-papand a cough assist but he hated it and sent it back--his breathing is fairly good still. I dont feel like I get that much from the ALS association either. he won't go to the support group, and I went but didn't feel like I got anything out of it as it was all patients, not caregivers. the care corrdinator is very nice, but doesn't call or come by to see us. I called once begging for respite care but was told I would have to coordinate it and then they would pay me back. I don't have the time or energy to find someone--I was hoping they would do that for me but...and even if I did find someone for a weekend, what would I do and who would I do it with? that takes too much energy up too. I contacted Hospice and they came out to the house, but again my husband told them he was fine and not ready. They said there was nothing they could do if he didnt want their services.

I don't think that there is anything I can do to make this easier--I am living the live that I was handed even if it is not the life I want. I just get up every day and do what I have to do to keep everyone going.

ALS sucks. plain and simple.
 
Barbie.....sorry for the huge weight on your shoulders.....I hope it made you feel just a bit better to "get it out" here on the forum. I am not a 24-hour caregiver like you, but there are MANY here on the forum who ARE and I really encourage you to get more involved here! I think it will help you SO MUCH to know that many of the feelings you have, others do too! Then you can converse back and forth here and support each other. I have made some wonderful "virtual" friends here (you know who you are! :) ) and I know you can too, just keep reaching out and watch the responses/support come back to you. I wish you a peaceful day.... Mary
 
Barbie, Thank you for what you are doing for your Husband. You are a exceptional person. I hope you find some help somewhere and get some time to rest, God knows ytou deserve it.
 
Barbie, glad you wrote about your situation...and want you to know how much I admire you for all you're doing. May I ask how old your three children at home are? I'm wondering if they can be of any help in any way. Hospice has respite care here for the patient, only for 5 days per year--but if you could convince him to accept hospice, they'd shower him and also allow you that 5 day break, when you could stay home and just get some rest. Different hospices offer different things. I'm a patient, and did not welcome being showered by strangers, but the first time was made to feel totally at ease. I'm wondering if you can prod him into doing what would make your life easier. Tell him you know he wants you to outlive him, but caregivers often burn out... It's really in his best interests to give you some slack.

Ann
 
Barbie,

I know it's tough! I don't know how people with children get through this without having a nervous breakdown! I only have one (child - not the nervous breakdown). I don't know how we are expected to pay attention to kids and let them have a childhood, while caring for someone that is debilitated and your funds are also depleted and you are taking care of all the inside/outside jobs, etc... I feel guilty all the way around. And you are taking care of a business? Hugs to ya!
 
Barbie let us be you sounding board, sounds like you need someone to talk too. We all do, this is not an easy disease, and my husband can at this point still walk. I sure wish you could get some help that you desparately need. You will be in my thoughts and prayers...
 
God Bless! You are in my prayers!
 
maybe stu can get you a break can someone post his email i never spell it right
 
You may have all of the cheese you like!

I'm pulling for you!
 
Barbie its tough. Thats all there is to it. I am a part time caregiver to my dad, run a buisiness and have 2 kis, ages 2 & 4. I think its tough part time. I feel for you girl and will pray hard that somewhere, someway, somehow you will get relief. Take care of yourself. This is a great place to come when you need to scream but cant. Big hugs to you!
Kari
 
Hey there Barbie!
I'm new to the forum and am very thankful for your post. I can relate to you and your life (as many others can too) in soo many ways. My husband was diagnosed March 31, 2010 with Bulbar onset ALS. His symptoms became noticeable in December, 2009. As of the beginning of this year he has been power-wheelchair bound and can only move inches at a time when standing with someone bear hugging him. Our home is going to be renovated soon so I will be able to wheel him into the shower- as of right now it takes two people to assist with his showers. He too is not keen on having someone help him with his personal needs but thankfully he has welcomed a PCA. We have three small boys- 6, almost 5, & almost 3- life was challenging before and now with him living with ALS its unbearable some days. I left my full time job of 7 years in June though my mind left the job nearly a year ago. My husband is a veteran- thankfully! Both our families are very supportive but getting respite is still challenging. Because he isn't willing to have his dad or sisters assist him with personal needs it leaves his mum. Then to find someone to watch all three boys. Man, its exhausting trying to work out all the details. And then once I do get a break it is never long enough and I don't come back refreshed- its almost as if I feel resentment- the time away was a tease. Sigh. I keep on truckin' though... I go to bed crying some nights and wake exhausted. I don't feel like a wife or even a friend but an employee. The boys are suffering and disobeying - but who can blame them. Our oldest, who turns 6 on Sunday, has asked me twice recently- why does daddy need you whenever we need you? Heart wrenching! If I had the time to be a mum I just don't have the energy. I feel I could go on and on.

I do hope you continue to post and share your emotions. That is what the forum is all about. Though, personally, and I think you can relate- sometimes the thought of typing it all out exhausting- its as if we are reliving all the moments we regret.

I hope you find peace. HUGS
 
Hi Barbie,
My heart goes out to you. Your a gem!
I'm ok now, but have instructed my husband to get in help to make his and my daughters (she's 11) life as normal as possible.
You might have to take matters in your own hands. You need a break too and take care of your own needs.
Thinking of you,
Susan
 
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Thank you all for your kind words. .. it is not easy for any of us--caregivers or patients. Why does so something so horrible as ALS exist? why are so many good people's lives ruined? sigh...I know there is no reason and it is simply what it is.

my kids are not as little as so many I read about--it really breaks my heart when I read about little babies and 5 or 6 yr olds. mine are all teens now--15,16,20 and 22. the 20 and 22 yr old really have done the best with it--they were both in high school when ALS hit and already were moving on so to say. the 22 yr old left for college the same year my hubby got sick, the 20 yr old has been a blessing and stayed home but she is ready to leave now and i don't blame her. the younger two have had the rough time--they were 10 and 12 when dad got sick. I get alot more rebellion from them than i did from the older ones--i was a stay home super mom until he got sick. Now I barely pay attention to them--there is only so much i can do. With them being teens they don't want to help with much --they do house chores but only when i remind and often times half heatedly. (like all teens right!) I actually don't feel any guilt about the kids--I keep telling myself they they will be stronger and better adults becasue of what they have gone thru. LOL. I know I am doing my best in every area--and I know it really isn't good enough because it is just too much for one person. But I will say that that keeps me from feeling too much guilt. What I feel is sadness and resentment becasue I miss me being important (not just to the survival of others!)and i know that soon I will have all the "me" time i need and it will be awful...

I have a question for the men and women whose pals have died and they still visit here---how hard is it to get past this experience? can you ever really be happy again? how do the kids recover? are they ever the same?

Thanks again to all of you--I really mean that
 
Barbie in answer to your question. I will answer it from my perspective. I lost my first husband to cancer in 2000. My son was 16 when he passed, daughter was 20. Time....people will tell you that, but is true, at first all I could think of was how he looked when he was sick and all, over time I remembered more of the good things. My kids turned out just fine, of course they will always miss their dad, but life does go on. I just never thought after marrying my second husband that I would have to deal with another awful disease. It sucks just like the first time!
 
Joni--I think you have to bear too much! Bless you!
 
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