Your Rant and Raving page, unload your feelings

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ok, good to know. Yikes, and we moved here! Hubby ain't a goin' to be happy! :(
 
i just found out joel as soon as i find out what ins. i will let you know
 
Joel, sorry to hear about all the problems you are facing. Seems like they come in bunches around here.
Hang in there my brother, fight the good fight of faith, and I pray the windows of heaven open and pour you out a blessing to meet every need. You have been such a blessing to all of us over the years, thank you for just being you.
 
Oh Joel, so sorry I have been gone for a while, but hun, you have GOT TO KNOW IN YOUR SOUL that you are here for a reason! Is there a way that Christine could read all that has been written here? Or, if she does not have an email, just email yourself and have her look at it and tell her there how you feel. It must be so frustrating for you not to be able to communicate! Now, my garage sale isnt going to happen until after the 4th wednesday of this month, but if we can arrange a date, maybe you can get someone to watch over you and I will take her out for a spa day! NO CHOICE! HAHAHA... Get her feet done, massaged, her hair done, and then follow that with a full body massage. My treat if I make enough money from the sale hun. Now, I can be VERY persuasive when I want to be, so she best prepare herself! hahahah, plus I will of course look forward to having time with you too. And yes, hun, you will be able to communicate with me, I will see to it! Both of you have just been through so much. A true love story. You are both maxed. Hope and pray for a good garage sale, and maybe I can help hun!
Love ya!
Kari
 
blubear i will pm you ,
joel are you on an antidepression if not maybe it is time you always been so upbeat if your feeling this way maybe it is time for it , and if you are on one might be time to up the amount , i am waiting to hear from how the ins. works still
 
I am so new to this....my mom was diagnosised yesterday. My heart feels broken, my head feels even more broken. How could this have happened to my family? How do I deal with this? Whay can't I stop crying? I'm fed up with everyone telling me it's going to be ok. No it isn't. It never will be again. I can't take the pressure from my stupid job in addition to my real life. Fell like I need to medicate myself into oblivion but that can't possibly help Mom. No one I know understands how this feels, how it's taking my breath away.
 
Bshade, can you apply for some compassionate leave from your job while you are under so much pressure and sorrow. Can your MD write a sick leave for you?

ND
 
Hi Bshade, my heart goes out to you and I am so sorry for what you are going through. My husband has ALS, but there are plenty of those within the forum family who have walked in your shoes with their moms, and will be here to support you. You may want to post a new thread in the General Discussion or Caregivers forum so more members will see it. We understand your feelings, and you are right, things will never be the same for your family, but you will become strong for your mom so you can help her through this. This forum has been my haven for information and support. Feel free to ask questions or rant if you need to. You are welcome here.
 
Thanks everyone! Things are much better, Christine must have read what I wrote. LOL.

I am not depressed about this and do take Emotional Lability medication. It is reality. She likely could benefit from some medication.

I understand how hard it is for CALS to cope with what is happening to their PALS and it breaks my heart. And, there is nothing I can do about it.

Reading posts like Bshade's puts it all into perspective for me. It is hard to read how devastating this disease is to family members. It sometimes makes me want to give up in order to spare them the inconvenience and heart break. That does not mean I am going to end it and I am not depressed but as one who was always doing things for other people it is quite a transition to get used to.

I sincerely hope I am not leaving the wrong impression of what is happening. I love my wife more than life itself so to see her upset and not be able to do anything about it is very hard. I want to spare her that, but can't.
 
Hi Bshade, you are not alone my dear. My heart goes out to you and I am so sorry for what you are going through. I have been fighting this terrible disease for over 5 years, and there are times when you want to have a fit and scream. If it had not been for the other members, I do not know how I would have managed over the years.
We are here for you. Rant and rave as much as you need to.
 
Thank you so much. It helps to know that I am not alone. I am so angry at this & at the same time, so very sad. My mom is only 60, they diagnosised her w/ MMN 5 yrs ago, but rediagnosised her yesterday. Felt like I'd been hit in the forehead with a 2X4. Seems like all our plans for the future are up in smoke. I hate feeling like I've lost the fight before the war begins, but don't know what else to do. I'm supposed to go to counseling this afternoon. Not sure I want to. I think if I hear one more person tell me it's going to be all right, I may just scream. I don't know how to help my adult children deal with this. Seems we all just want to wallow in our own pain for now.
 
Unfortunately, the company I work for is pretty determined to fire me before I can get FMLA set up so I can go help her. I am working on getting it filed right away, but you know how red tape can delay a process.
 
Not sure if this is where this goes... I want to relate an experience at the VA clinic today that disappointed me to see how a PALS was being treated by his wife and son. (I am guessing at their relationship, but I think it's a good guess.) My husband and I were waiting in the waiting room to be called in to see the neurologist.... so were these three people. The PALS was in his wheelchair.

They came in and registered.... took their places in the seats. They placed the PALS with his back to them, facing away from their seats. This man sat there looking so dejected and sad. The longer he sat there, the more he slumped, and his face drew down in total hopelessness. His wife looked miserably unhappy and angry that she had to be there. The son got up and scolded the man (his dad?) to keep his feet placed on the wheelchair footrest properly. The mother and son talked about him, right in front of him, making derogatory remarks about his condition.

I was put aback.... astonished that there was such an attitude of hardship FOR THE CALS and not the PALS. I wanted to get up and give him a hug and strike up a conversation (with the man in the wheelchair.) I thought, how calloused the family is in thinking THEY have it bad. They didn't give him a moment of dignity or compassion. If they were like this in public, what was it like at home?

They looked like they wished him dead.... or wished they were dead. What a way to live.
No matter what I do as a caregiver, I treasure my husband's love... and I value whoever I have taken care of as a caregiver to the death. I made sure they knew I truly cared and valued them. I hope I never ever show to others what I saw in these people today!
 
I read your post and couldn't say anything right away, it was so distressing, Marjorie. I think the "rant" section is absolutely appropriate. The man being mistreated is being abused. I don't have any answers, just wanted to say it's heart breaking... and I'm very grateful for the love I'm shown.
 
bshade - so sorry for you - we all know how this feels right in the pit of our stomach and no it is not gonna be ok when i was told my son has a.l.s. it was the worst day of my life even over my mom and dad death cried every day for a month ( at least ) straight cry myself to sleep then stayed up till early morning so that when i went to bed i was just exhausted and as soon as my head would hit the pillow i would be asleep no way was i not to be busy or i would think and cry it has been a year this month and i am handeling it much better but , i do hate it as much as ever even worse now as i see him lose parts of himself , but you will get stronger in dealing with it and you will see her thru , thats all any of us can do .

joe - i am glad things are looking better was very worried ... when my fund raising page is done i will send it to you and it speaks of how you feel about not being able to help your loved one when you were always the one who took care of things ... the shoulder to cry on .

marjorie - the 1st time you see that you are in shock the next time i bet you will open your mouth , my words would not be nice but , maybe yours would in a more postitive way
 
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