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stasia_23_76

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Hi , my name is Stacey and I met my fiance where I used to work as they fired me do to my relationship with my fiance which was actually allowed but my personal boss found a reason to fire me and then gave me her personal opinion on how much our relationship discusted her. My fiance has ALS and has had it for about 5 1/2 yrs. We have been together for 2yrs and I took him out of the nursing home that I use to work at about a 1 1/2 ago . I don't think I could have ever prepared myself for the care that I would have to give my fiance who is 38yrs old but I love him very much and refuse to give up as that is what most of his family and ex-wife did to him when they found out what he was diagnosed with ALS.
He is in a motorized wheel chair and has little use of his arms except to control his wheel chair and no use of his legs. His lungs are okay so far but is coughing a lot more and the heat takes a lot out of him.
Being a person who has worked in a nursing home for many years is used to caring for people but I guess i have a lot of trouble dealing with the anger he has....he is easily frustrated with me when he is trying to communicate and no matter what I do it seems to be wrong which I understand all the anger and frustration because I would be too if I had to deal with everything he does day to day but I just don't know how to deal with it emotionally as I take everything personnally and my personal appearence and health has gone way down hill. I constantly feel depressed and like I could cry every second of the day and feel alone in caring for him because no one else knows how to deal with his anger either. I refuse to ever put him back into a nursing home but maybe other people could give me some pointers on how to deal with some of this stuff so I can better care for him.
 
Hi Stacey and welcome,

Sounds like you are having a rough time. I know, I have been there. My husband died in March of this year of als. He had it for approx. 8 years. As the years went on and he became less mobile, and as it got harder for him to communicate with us, the frustration level multiplied ten fold. It is a very diffuclt time for all involved. We also kept Henry at home too. I know that this was the right thing for us, and we tried to keep things as normal as we possible could given the circumstances. He is not mad or angry at you, he is mad at als. Remember that. You are not mad at him, you are mad at a ailment that has all power over you. I used to get angry and hurt over the things that Henry said and did at times, but had to put things into perspective. I had my time outs from him, and was lucky enough to have our three kids at home to help me out. He is so lucky to have you. He could still be in the nursing home without no one there to give him the love and comfort he needs on an emotional and physical level. Sometimes we have to remind them of that. You need to take time from the situation a couple of times a week. Believe me, just an hour here and there will give you the much needed break from the whole situation. We have all been denied of many things, and I think that is where the hurting and disbelieve comes into effect. All I wanted to do was to grow old with my husband. But, I grew with him until death us do part. So, in all, we lived with much humour, love, and compassion that was humanly possible. Try to release the tears when you can. You are entitled. It is good to have a big ole cry every once in a while. He also can be reminded that you love him unconditionally and that is why you are with him, taking care of him, and living a road that not too many people will face in their lifetime. You are special and so is he. I do not know if you pray together, but this is also a big help. He is still the same guy he always was, he is just living with als. Do not deny yourself the simple things that make both of you happy. We just tried to live each day as best as we could until the end. It was not easy let me tell you, but I have no regrets. We still had our fights, and we still made up! This als thing is an all consuming thing, and there are just not enough hours in a day to do all the things that you would love to do. Try to stay strong, you will get through this, I did. He will be alright, and one day you will look back on your experience with als as a postive undertaking. You will be able to give to others things that not many people will understand. Please feel free to join us anytime you want. We will all be here to help you with questions and just to listen. We are a great group here, and we are all here for the same reason. The reason is to help and support one another the best way we can. Hope to hear from you soon. Take care and remember you are not alone.

Stay Strong. Carol
 
Welcome Stacey to our group. Your fiance is definitely lucky to have you, and I"m sure he knows that. Like Carol says, he is not mad at you....You definitely need to take time for yourself. Whether that's a bubble bath, yoga, women's group etc. There are times too that you might need to seek the counsel of a therapist, even if it's short term. Don't let yourself get so depressed you are incapacitated. That doesn't help you or him. But, stick with us and you are sure to find lots of support, wisdom and even a dose of humor! Melissa
 
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