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Who in your life is the most supportive when it comes to understanding FA?
For me, my husband, Justin, is the most understanding. He empathizes with what I go through on a daily basis, sees my progression of symptoms turn for the worse, and simply listens to me when I explain what I am feeling and experiencing.
I know not everyone is going to fully understand or try to understand, but it can be hard and frustrating when you try to do this with other people, especially those in your close family and friends.
Do you have someone close to you who fully understands the disease?
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15 Replies
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After an ER Dr tried and nearly succeeded in killing my wife. It left her severely disabled. To the point when she has been in the hospital for various reasons she can’t yell for help and she can’t press the nurse button….which wouldn’t matter much anyway since most people can’t understand her when she speaks….that leaves me to have to be with her at all times. Would be nice if someone cared enough to be able to relieve me , if nothing else so I could go eat , but that clearly isn’t going to happen.
Far too often I catch nurses trying to do something they shouldn’t, whether wrong meds or food etc.,so just leaving her alone is a scary proposition.
Since the pos Dr that tried to kill her , I make sure I fully understand every little thing they do in the hospital ….BEFORE they do it…..example …she had a kidney stone and infection and it caused her BP to be very low…since she was on BP meds for high BP , a nurse came in to give her her normal BP meds…if I wouldn’t have stopped it who knows what could have happened. Also her first meal while having her kidney stone, contained everything that is the worst thing you can give to someone with kidney stones, like chocolate.
Count your blessings if you can at least have 2 supportive and understanding people to be there….FA or not.
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Hi Clester, I am sorry to hear about all of your wife’s hardships with doctors, nurses and hospitals. She is luckt to have a supportive husband like you by her side!
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Support and unconditional love and help is so important. Who is someone you can always rely on?
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The closest we have would be her dad .. he is the only one who ever showed up to visit when she has been in the hospital. Unfortunately he is in really bad shape with cancer . My wife has been struggling with the inevitable reality of losing him.
From this point on it will be just us because no one else can be bothered with even 5 minutes of their time.
I’ve already lost enough in my life that nothing really gets to me anymore except seeing my wife upset and scared like she has been with her dad. Its taking everything I have to keep it together as it is . I just pray for the strength im going to need because I know there is no one I can lean on when the time comes .
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Hi Clester,
I am sorry to har about your wife’s dad’s cancer and the toll of the future it’s taking on you three. I think cherishing the moments and memories now in the present will be positive to focus on!
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Farher in law has given up….he is in the hospital right now and as soon as they stabilize his bloodwork they are sending him home in hospice care….he has no immunity.
Going to keep him at home as long as we can . His wife is already stretched thin so im not sure how much more she can take by herself.
I just pray for the strength to get through this for my wife and his wife. I went through it all with my dad with his alzheimers so I have a pretty good idea what’s coming .
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I agree with Kevin! Let us know if the community can support you in anyway.
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Hey @Clester so sorry you and your family are going through this! Thank you for sharing, and I hope you get some support through this community.
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I am extremely grateful and lucky to have several family and friends who are very supportive. I have to say my daughter and my brother and wife are always there for me. My daughter is always checking on me. I can talk to her about anything, she is a great listener, doesn’t judge me and gives me unconditional love affection. Now that my parents are gone, my brother is older and taking on watching over me. My nieces and nephews are also right there for me. Without everyone in my life I just wouldn’t be here.
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@dave, I am so happy you have the endless love and support from your daughter, wife, brother, and your nieces and nephews! It truly makes a differerence and brings some light to when dealing with FA.
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Update….wifes dad is having last rights read today . He hasn’t been able to drink anything in 3 days .
Long disgusting evil story but…
Her dad” bought a house for my wife” her dad’s “girlfriend” who he has lived with for many years made it perfectly clear that the house is hers now .
We were forced into living in our camper over 6 years ago because it was made very clear that my wife and I have no say in what happens with the house . The few weeks I was away getting and gutting the camper to make it usable for us …they all tried to have my wide put into a nursing home because no one wanted to step up to help. That made me have to shortcut many things on the camper so I could rescue her from her own family. This also made it very clear no one could be trusted for anything especially the important things .
I have to be my wifes power of attorney, someone has to , and thats the one thing that prevents me from getting paid assistance to care for her and that money would be life changing for us considering we only live on her SS (about minimum wage). But since no one can be trusted we have no choice but to suffer ….
We have been “camping” at that house for the last few years because it needs some work(new roof, tires, new wheelchair ramp). And the van needed some work which I finally got completed a couple weeks ago.
Now we need to find somewhere to move our home to …since no one in the family seems to give a crap , I have no idea what we are going to do. At least her dad left us be even though he obviously didn’t give a crap…but his “girlfriend” made it clear she isn’t going to leave us be . And she said it with a very disgusting disrespectful attitude . It was everything I could do to contain myself. My blood was boiling far more than it ever has.
We have no one to turn to for help….and we have very little time to figure it out.
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@clester , I am so sorry you and your wife are still having hardships with the situation with your wife’s dad. I hope peace comes out of this soon so you both can find soltiude in all of this.
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He past yesterday…..his birthday was today. Dont think it has hit my wife yet .
Not sure what’s going to happen now….since he was the only support of any kind we have had.
I’ve lost a lot of people close to me already so death doesnt get to me anymore but seeing someone I love hurting does ….going to be a rough day for both of us when it hits her … probably at the funeral.
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Clester, I am so sorry for your loss. It’s awful, and I know we are just a virtual community here, but please know that we support you and your family. Our deepest condolences.
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I am so sorry for you and your wife’s loss! We are thinking of you both during this difficult time.
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