ok........I have been away.....and I need yalls help

[freddiesnetty]

Well I have been gone for awhile, I am so damned depressed I don't know what to do. I know that it has been hard around here awhile back, everyone passing and even though you don't know these people that we talk to or about, It sure seems like it.......

I think that in my pea brain mind, I thought that getting Freddie trached and vented would slow down this disease.......well guess what not the case, I know that alot of people have had success with the trach and vent. Well I think that they were all not in the ending stages, when they had this done. It has been nothing but constant hell, from the beginning, Freddie has had pneumonia twice and has never really been able to get up into his chair for very long periods of time. It is HORRIBLE to look at on a daily basis. There is nothing but sickness in the house.He is constantly in pain due to the deterioration of the muscle that has just left bones on bones. So, I constantly repositioning him, I don't sleep anymore, I know that I have no right to *****, I feel so bad for him. I don't feel like his wife anymore. I can not talk to anyone about this......They just don't get it........People are so stupid...I get " I hope he has a speedy recovery" I am overwhelmed at peoples ignorance. The best one is my friends call me to tell me about some really cool thing that they are going to or have been to and tell me all about it and then in the same breath, "Oh I wish you could go" They think that I just can get up and go at the drop of the hat.........I feel like I am going to loose my mind. This disease is so friggin lonely. I know that Freddie feels like crap. He never looks happy anymore. He doesn't want to work on music for now........I just don't know what to do, I wish I could get in my car and drive and never look back......But the problem to that is I am always so damned responsible.......I feel horrible even talking about this...I can use my limbs and speak..........I guess it is just guilt, I can not even remember the good times we used to have, It makes me mad to look at videos, pictures or even listen to his music. I feel so ripped off............................I know this all sounds so selfish but at least I am being honest about it..............I feel like this has stolen not only Freddie's life but mine as well.....Today he asked me to take him to the bathroom and I just started crying.....My back hurts, my shoulder is about gone........I feel so stupid to even ***** about these things, I mean hell we all have to go to the bathroom. Well I have missed you all and maybe staying away was not the best idea. These people out here.....well they just don't get it........I love my cyber-friends..Well I am just rambling......I feel so lonely and depressed.........
netty

 

[brendapals]

netty,
please, please dear, is there anyone you can call to give you a break? Even just a few hours away from home could do you good.

I know everyone has missed you on here-I know I have-love your sense of humor! But, please, call everyone you know, family, friends, old co-workers, someone, and let them take some of the huge burden off of you.

People are going to remain ignorant no matter how much we try to teach them, and it does get maddening at times. I wish I lived closer, I would make the phone calls for you, even though my speech is that of a very drunk woman,:lol:, I'd still do it.

You need help, and you need it now, you can't continue to be able to do all that you do for freddie when you're about to colapse from exhaustion. I'm also sure he knows that, but damn this disease,
I'm sending prayers your way right now,
love,
brenda

 

[crystalkk]

Netty,

I feel so bad, I'm sure you feel like a prisioner in your own home.
Like Breda said can't someone come and help you? What about his kids?
Does ALSA send someone to help with care for a couple of hours a day...
If you can't leave the house, take a nice bath, light some candles and just relax with a glass of wine.

Please hang in there,

 

[brooksea]

Annette!

Girl, you need some help! Get with your ALS Clinic and talk to the Social Worker or SOMEBODY about Hospice! They should have a service they recommend and are using for their patients.

Also, the ALSA should have some sort of respite care program ( could vary state to state though ).

I feel for you Netty! Wish I could hug your neck. It's OK to let it all out here. Who else would understand? Believe me, I know what you are talking about! Family and friends are occupied with their own lives and don't want to get involved with something that may "depress" them or "turn them off."

I sincerely hope an angel will light upon your doorstep to help you and your Freddie!

PS
Don't ever feel like you are being selfish just for wishing you had a well NEEDED break from it all. Each of us can only take so much...

 

[rose]

Netty,

I feel so badly for you! Never ever apologize for sharing how you're feeling. I don't know how you do it, and have been doing it. Please (please please) try to accept some help from hospice. You've got to get a break. You know Freddie wouldn't want this for you. You're an inspiration to everyone here, but no one expects you to be superwoman.

Try to take (steal) a little time out of each day for yourself, like Crystal said, even just a nice bath, or a pay per view movie!

((hugs))

 

[Cincinnati]

Netty,

I know exactly how you feel, as caregivers all of us have felt like this at one point. Please try and contact hospice to get some help for you and Freddie. I'm only a phone call away if you need to vent.

I'll keep you in my prayers. Remember you are not superwoman and you need time for yourself. I know it is easier said than done because I have been in your shoes.

Sincerely

Mary Lou

 

[katekath]

Netty,

Here's a big hug to you. *HUGS* I don't know what to say to make you feel better, because I had been feeling exactly the same these days too. But please know we are all here for you.

Wan

 

[joelc]

My dear, my heart aches for you! Please PM me your phone number and a good time to call as I would love to talk to you for awhile! Please, please take care of yourself and try not to stress out. My prayers are with you!

 

[califsand]

Hi Netty,

I've been wondering where you have been but felt that with so many people lost lately that this may not be a place you wanted to be. You're in a place that so many of us know too well and in this forum, you're heard, loved and never alone. What you're saying isn't bad or wrong, it is natural. It is draining to watch someone you love go through this disease and devestating to be such a part of it. It wears you down in every way. You shouldn't feel guilty about that, no one here should, but it is a sad reality that guilt comes from having frustrated feelings when it's not your PALS fault that they are going through this and dragging you with them. Do you think you're a saint? No way! None of us are... we all try to do our best, or tried.

I tried to call you a few minutes ago (yes, I still have your number you gave me a while back) and your mailbox is full. I wanted you to know that you're not alone. I may be in California and not there to give you a break but I know - and I care. So many here do! I'm hoping you didn't answer because you are having a quiet night and getting some much needed rest.

There comes a time when outside care becomes a neccessity for some of us. I had to get beaten down before I could accept that my Dad and I both needed more than I could provide on my own. You know I got to the point too of tears when he needed toileting help! I was just so sore and tired. Then the guilt after would really work me over and I would do everything in my power to make up for it. I didn't deserve to beat myself up like that and neither do you. Being a responsible person makes it hard to ask for help but the ultimate show of strength is knowing when it is time to demand the help you need. I can't speak for anyone else but for me, needing help and asking for it made me feel like it was the end of the world. I can't describe how much worse it was when I realized I needed help but was too proud & scared to ask for it. However, once I asked the right people, I learned that it was the right thing to do for my Dad, myself and especially for our relationship.

I'll be up a couple of more hours and if you want to talk, call me back. My number should be on your caller ID and the area code is 805. I'll message my number to you also.

Take care of yourself Netty!

Sandy

 

[mndireland]

Netty, your post makes me feel really sad and yet glad at the same time. Sad for wat you are going through but glad that my feelings are not alien! I am my mothers care giver, but have 3 other sisters, 2 that live very close by, and I get very little (sometimes no help) I work 18hours a week and when Im not in work Im at home looking after her, Somedays I cant stop crying and it starts from just wanting to go the shops, or the cinema or to a friends for a coffee and I cant. I feel my life is not my own. I am 29yrs and 5 months pregnant, my fiance lives in the Uk, I live in Ireland, I was due to move there 2 years ago but stayed when my mum got diagnosed. Sometimes I want to continue with all of our plans, marriage and moving in, we got so frustrated about not being able to do them they we thought we would do them just in the wrong order, so baby is first!
Anyway, I have gotten a little bit more help and it was just from standing up to people, so I thought I would share this with you. Im not sure how much or how good your family are, but if they are around, this is what I did.

Basically I had a couple of episodes, were I thought i was about to have a mental breakdown, and so i called them all hysterically on the phone, on different occasions. In the end I called each of my sisters and told them, there are 4 weekends in a month and from here on in we all take one weekend each, either that or Im packing a bag and going away for a few weeks, my fiance was very worried for the baby and he did want me to do this, obviously its not something i would consider but they didnt know this. Anyway the rota does not start until next week, so we shall see......

This might not help for you, as I said I dont know who you have to call on? I know that the association here and the hospice are good if they think im not coping, and they will send some help, do you have this kind of help?

I would just like to say that I hope things get better for you, and you get some more head space, as I call it.
Prayers for you all

 

[CindyM]

Hi Netty. I was worried about you. In my experience around here, being away from these boards often means something significant is going on. You and Freddie have made piles of friends who would help with even little tasks like going to the post office or entertaining Freddie by reading the news or something to him. Don't go at this all alone. Hugs, Cindy

 

[Flowerpot]

Hi Netty

Sending big British hugs across the water ( they are very cuddly ) and hope they find you feeling a little better , after the lovely replies from your cyber friends .

It is perfectly ok to want to let off steam and I think the bath idea sounds great. Is there any respite care you can get - even for a few hours , so you can recharge your batteries?

kind regards

Flowerpot

 

[Zaphoon]

Netty,

You are a jewel! A true gem of someone with a heart! There are many in Freddie's place that could only hope for someone to care as much.

You've given a lot and need to recharge. If you don't recharge, the battery cells get too weak to work. Please, somehow, find a way to take a break, for yourself and for Freddie.

We all love you!

Zaphoon

 

[sdsyd]

Hey Netty-

You are a warrior, but sometimes even fearless warriors need to take a rest. I am certian Freddie would understand and want you to take care of yourself as well. Hang in there and know that you can vent ANYTIME.

Love and hugs~

Cindy

 

[hopingforthebest]

To Netty

Dear Netty

Just by all the replies to your posts, know there are those of us feeling your pain, and praying for you right now.

My husband is on bipap now 24/7, he too is a bass player. How he misses playing but no longer has use of his arms/hands.

It is a horrible disease and the only thing that keeps us going is knowing that someday, when God's time for George, there will be no more crying, only rejoicing and George will again play his bass! (and boy can he play! Really tight!)

Praying that Freddie will be there up front and jamming when God someday takes him home. Until then Nettie, we will just pray for God strength and know with assurance He will give it to us!

Love
Patty