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shelleynshaggy

Distinguished member
Joined
Sep 2, 2009
Messages
280
Diagnosis
08/2009
Country
US
State
OH
City
Brunswick
Feeling down - I am so angry with EVERYTHING! I feel so bad - Jim is having a hard time and I feel angry with him. He is saying he is having problems opening and closing his eyes (okay not angry on that one.) He is back to getting up several times a night - but having problems getting in and out of bed so he is waking me everytime he gets in or out of bed. Last night he literally rolled out of bed and he got stuck on the floor. I am now on Cpap (who would have thought I would have one before him?) and so I am having to get up several times a night to help him, readjust the cpap and try to sleep. I am upset about my whole cpap thing too.

On top of that I just found out this AM that I am positive for a genetic mutation that prevents me from properly processing antidepressents. Good news is there is a "medical food" I can take that will help to correct this - but of course insurance does not cover this - so it is more $$ a month. On top of this, this gene increases my risk of blood clots and arteriosclerotic coronary artery disease.

What the hell else can Jim and I pass onto our kids? All of Jim's genetic tests for ALS and FTD have shown negative so far but his maternal grandmother did have PSP and his dad was adopted so his gene pool is murky. Last month he signed onto a new study to have ALL his genes mapped for mutations (part of a FTD study from NIH).

Then yesterday I wake up to a dripping sound - it is raining INSIDE. Our fairly new bedroom window is leaking. I just want to cry. My strength is crumbling fast. I cannot take much more! I hate the cards I have been dealt, I hate this house, I hate my life. Our anniversary is quickly approaching and all I can think is this is NOT how I pictured any of this! I SO miss the man that I married! I think I could handle this better if we were older and we weren't dealing with dementia an "old person" disease in our 30s. I don't have the strength to face the day anymore, it feels like the harder I try the more life throws at me. I am quickly reaching my breaking point.
 
Shelley,

With all due respect... Is there any way for Jim to be moved to a nursing home? Even if for just a little while? You are not abandoning him. It doesn't mean you don't love him. You'd not be breaking your wedding vow. If you keep spinning all the plates, they'll start cracking, one at the time. What then?

You need time to re-group Shelley. Your kids need you - a whole you, not pieces of you. I know it's not how you saw your life when you pictured the future. None of us are prepared for this. How can we be?

If the nursing home idea is a no-go, can you look at having volunteers come stay at your house for the night, a few times per week. I understand the March of Dimes, Red Cross, Alzheimer society, offer these free services in some areas.

Ask a neighbour or friend to come caulk your window. Short term solution.

Please please reach out to your community - you will be surprised how much people want to help others. You need only ask. it doesn't make you a weak person - it makes you a wise person. What better lesson for your kids?

If I was closer, I'd come over myself.
 
I am so sorry for the cards you have been dealt. They say God will not give you more than you can handle but I have always wondered why some have heavier loads than others.

Is there not someone who can come in and help so you can have a day or two off? It sounds like you need some me time. Maybe seeking some therapy. I really have no other suggestions to help. I feel your pain, even though I am older I am dealing with kids at home and ailing elderly parents and my own illness.

Life is hard for everyone at some point in their life. You are strong and loving and you will get through it. I just wanted you to feel you are not alone. I wish I had a magic wand and could make things better, fairy dust....genie lamp....something. believe it or not but I like to sit outside as the sun is setting and look for the first star so I can make a wish. Oh how I wish.....
 
Hi Shelley,
I am sorry for all you are going through. All of us here on the forum really wish we could do more to help you. Is there any organization at all that could help you out in your area. Do you have a church you go to perhaps? A lady I know if helping a friend out who has cancer by starting a meal train for her family. Don't feel bad about asking for help like Elaine said. Many people want to help others but don't want to feel they are intruding. Send out your distress call ! Hugs to you. Kim
 
Shelley,

Please, for the sake of your self, get a respite break from your care. you need one before you have a breakdown. I am worried about you==it is too much to bear.
 
You have a lot on your plate Shelly, Please see if you can get help..
 
I too reached the breaking point, so I asked my husband to give me the only gift he was able to give. Would he go into a nursing home for 2 months so that I would be able to recharge? Bless his heart as much as he hated it he gave me the gift of being able to go back to where I was born and visit with my family. Once he understood that I would come home and that this was a gift to me it did not take too long for him to come to terms with the nursing home idea. The other part of this is that they put him on a stricter schedule, diet and exercise program, which I may not have been able to enforce myself, but now that he is coming home again I am going to make sure he sticks to their plan, it is better for him and in the long run better for me. Yes I felt guilty, but I believe now I have a better attitude and a lot more strength to deal with him, he is very difficult at the best of times. While I was away my dog died and our house was broken into, I'm not sure how I would have dealt with all that if I had not been away and able to get a good rest and a lot of love from family and friends.
 
My dad is in a facility in Texas that is a assistant living place but has more care like a nursing home. He gets 24/7 care but has his own apartment. Dad absolutely hated to have to move from his home town where my children and I live. But, we just couldn't find qualified staff to help us. Dad is now adjusting pretty well. It isn't home but he is content that he is being taken care of. I call him at least once a day and most of the time twice. My brother and sister take him to the movies, out to eat, and to their kids sporting events. Friends from back home call him and send him cards. My sister takes him to church. Dad is adjusting to his new normal in the best way he can. You definitely need some type of break even if it's just temporary.
 
Hi Elaine, and everyone
 
I am so sorry that you are feeling so overwhelmed. I have been there too, but I know that doesn't help much. As others have said reach out for help. Tim and my faith in Christ has helped us so much, but that doesn't mean that some days I just wish the world would end. Tim is the one that has the smile on his face all the time, and says, he doesn't know what the reason is, but God trusted him enough to give him this trial, and he is taking it as an honor. I have been guilty of being too proud, and this has brought me to my knees, so that I had to reach out for help. It has always come, and at times by people I didn't expect. I have and will continue to pray for you. I have even at times just called a crisis line to talk to someone, because it was 2 or 3 am and I felt like I was at the end of my rope.
 
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