I hope this is okay here

[Kathi]

I hope this is the right place to vent...for no reason other than Im just sooooo .... I dont even know what word to use!

My almost 86 yo mom has ALS...and it makes me so sad to see her. I had to put her in a group home earlier this month becuz she fell 3 times in 2 wks, the last one being Christmas night. Hospice put her in a facility while I found a home. That alone was awful, I feel like I should be taking care of her here. But I cant take care of her 24/7 and work fulltime. I also have a 22 yo daughter that is learning delayed, so I have to take her to and from work, and did I mention I work 3rd shift, so people think I should be awake all day?! UGH!

My husband died 2 yrs ago suddenly, and I have never ever felt so alone and like I needed his support as much as I do now! He would be so much help with my mom.

How do you guys do it that take care of your loved ones 24/7? My mom has a feeding tube, cant talk, and now her legs and arms are giving out. It hurts so much to see her like that.

I dont usually have these emotional breakdowns...I stay pretty tough, maybe cuz of the work I do...but some days, like today HA! I have total breakdowns and just dont think anyone understands. I guess more of a feel sorry for myself time...cuz I know its worse on those WITH the disease...but watching it take her away from me like this is so hard!

Thats all...thanks for having this site...I have learned a lot from it...know somewhat better what to expect is to come...and thanks for having a page that says VENT so I could at least get this out!

God bless you all...I pray for a cure for this horrible awful awful disease someday!

Big hugs,
Kathi

 

[abbas child]

Kathi, I'm glad you felt safe to vent. You have every reason to be full of emotions needing to be let out. I'm a pals, but from where I sit, this is in many ways harder on our Cals, especially our family member. Your well being should be asked after at least as much as ours. Welcome to the forum... and I hope you get lots of help emotionally and also with ideas for help here.

Hugs--
Ann

 

[joni51]

Kathi always feel free to let it all out here! We all do! Sorry about your mom, and your late husband, with all you have going on and working third. Bless your heart, anyway welcome here...:0

 

[Ladyinn]

Kathi,

Welcome - and so glad you felt comfortable releasing your frustrations here. I have found that just typing the words I am thinking and feeling is a big relief.

I lost my mom of 86 years just a month ago. A year ago I found it necessary to move her into assisted living as my own health was deteriorating. I too felt guilty and like I had abandoned her. But - I know she was getting better care than I coiuld provide and when I visited her - well, we had good visits and my stress and guilt lessened in time.

I had also been a caregiver for my late husband for two years prior to his death in 2006. I immediately brought my mom here from Florida and continued caregiving. I believe that my failure to take care of "me" contributed to the rapid progression of my ALS and my need to be cared for rather than care for others now.

You mentioned using hospice.. have you stopped? I had them for my husband at home and for my mom in the nursing home, and am now using them for myself at home. They have made a world of difference in my comfort level and my attitude, so you might find your mother would benefit too while in the nursing home.

The whole point I am trying to make is that you need to find rest and time for YOU. And, keep coming to our forum to rant and rave, to laugh, and even cry, because we are all in this together.

Hugs,

Diane

 

[TedH5]

I am sorry that you have all of this on your plate. You are such an incredibly strong woman. The forum is a very safe place to come and vent. You will lots of caring and love here. Stay strong and keep the faith!

 

[brooksea]

Kathi, please don't feel guilty! You are doing the best you can. It's not that you feel sorry for yourself, it is literally the fact that others don't understand, as you stated! You would just like some compassion from others.

This forum will help you along and help you stay strong! There are many here walking the same path as you...

 

[shelleynshaggy]

Kathi - Vent Away!

I have no answer for the "how to" - except I feel like carrying a rubber hose to beat the people who think us 3rd shifters can survive on 0-2 hours of sleep - and for those who make it sound like getting sleep is easy! Nearly bit off a few heads over that one.

 

[Marjorie R. Wilcox]

So feel for you and wish I could give a big hug. I retired last year but used to work from 2 a.m. to 3:30 in the afternoon, 3 days in a row on the weekends. It's brutal. I would sleep, eat, and work, and that's all for those 3 days and then have 4 days off to recover.

Hard times make you strong and show what you are made of. So many are having hard times out there. I grieve for us all.
We look to the hereafter where there is no more tears. So glad you can come here and share with those who understand. God bless.

 

[Gma'sMeMe]

Hi Kathi, Ann, Joni, Diane, and all who have been "touched" by ALS. This "quick reply" is actually my first post here on this board. I have just been looking around all the different posts trying to see where I fit in. My Mom is 85 and was diagnosed just a couple months ago, yet the weakness in the legs and arms started about a year ago. It just took the passage of time and the progression of the disease for her to get the final diagnosis. My mom is in a board and care residence and is completely bed ridden, except when the caregivers use the hoyer lift to move her to her wheelchair for a few hours a day. Things are happening quickly. She now needs to be hand fed by the caregivers. I cant describe how hard this is. I think my siblings and I are still in shock. She has SUCH faith and often says she just wants to "be with John" (my dad, her late husband). I, too, wish that for her....I struggle with those thoughts..., but see that others here do as well and that it is normal and ok to feel that way. I needed to hear that. I have seen some of you are so positive and loving in your advice/comfort to others....especially touching are Ann's postings, as she herself suffers from this disease. Your ability to show OTHERS compassion and sympathy is quite awesome. You are all people I hope to get to know now that I am on the board. Kathi, you are not alone in any of your thoughts. Nice to "meet" you all. Good night!

 

[joni51]

Gma'sMeMe so sorry about your mom. We are so glad to have you here though. As you post and read through the posts,hopefully it will help you. There are some wonderful people on here, Pals and Cals. We all know how you feel. If i had not found this family, I don't know who I would talk too. Just know any thought you have is pretty much normal here. Take care of yourself and post on my wall if you like.

 

[abbas child]

Oh, Gma'sMeMe, I feel for you and your mother. Her faith combined with the physical difficulties make "going home" such a normal reaction; at least to me. My mother died in '09, Thanksgiving night, and she was 86. Having had a long illness combined with terrible skin breakdown and pain, I wanted her to be released. Yet it was still very upsetting.

I know you're seeing a fast progression with your mother, which is generally much tougher on everyone--especially tough in the beginning--but no doubt when the time comes for her to go, you'll also be ready to let go without reservation.

I hope you find support and comfort here. I lift you up in prayer, knowing this is a struggle.

Ann xo