Feel like my life is over sometimes

[Mary Helen Barr]

Yes, I know that sounded terrible, but I know he wants the misery to be over, too. I wish it could be over by him getting better. MY father sometimes asks about his keeping me from my family, etc. I know he doesn't want things this way. He tells me frequently that if it weren't for me, he would be in a nursing home. That is definitely true, because my siblings and mother all think he should be in a home. I do NOT think he belongs in a home. His mind is still perfect. He's had ALS for 7 years now, and it is so hard to see how his body has been wasting. My siblings say that they'd never want their kids to care for them. I say that my dad would have said the same thing all the way up until it became necessary. I really don't mind usually, and I do think my caring for him is the "right" thing to do, it's just that sometimes it's overwheming. The things that keep him alive are OK (heart, eating, breathing, etc), he's just not mobile. It does seem that if everyone in the family would take their turn, noone would be overburdened, but it is not that way, unfortunately. I go back and forth between being glad to help, and being resentful. I have to say, that I have spent more time with him, and gotten to know so much about him, more than any of my other family members because of this. So, it's not all bad. He does try not to be a burden, which is kind, but is also so sad. Noone WANTS to be a burden.

 

[Icanmanz]

Mary Helen, thanks a bunch for your reply. I am not doubting at all that you are taking good care of your dad, and you deserve a medal for that. I agree with you, the rest of the siblings should pitch in, because being a CALS is not easy. Who wants to see their loved ones bedridden in a vegetative state? Seven years is a long time, dear! My son lasted 15 months after diagnosed. Why do these things happen to kind people? I cannot understand that! I promised you that I would apologize, and I am! All I can say is God bless you and your dad. Where do you guys live? (I am a nosey rosey! LOL) Keep us posted, and God bless! Again, you deserve a medal! Being a CAL is not an easy task!

Irma

 

[Lorie]

I Know How You Feel

I KNOW HOW YOU FEEL! This is the only place I vent. Cindy, CJ, AnnMarie, Sherry and all my other PALS and CALS that know my situation with my brother Tim. For the New Members you can read some of my post and replies. For short, Tim lived in WV with a wife half his age with CP for four years. He has elderly in-laws. In Jan. his Doctor called me and told me that Tim either comes back to Alabama or goes into a State Facility. It could be 300 miles from where lived. (i was waiting and prepared for this call). So I waited for the call from Tim and his Wife, because it had to be their decision. I was not going to get blamed down the road.

HE WAS NOT GETTING TH CARE HE NEEDED! For Example, one night he screamed on the phone to me that he couldn't get his hands washed. That they were solid black. (tim has no use of his arms and hands). So we get him home to Alabama.

I have bent over backards to make sure he has what ever he needs. If it takes Brains in this Family. I do it! I absorb all the transportation cost to do everything that I do for Tim.
It is part of my contribution to him. He does not have much money ( i am not rich). Round trip to and from my Mom's is appx. 30 miles. Not to mention the trips to the Doc. Therapy(i just got set up) Errands, Etc. My brother Ron is great to Tim. My brother Neal helps when he can.

I told them Thursday, I had to have help getting him to and from where he needs to go.
A few of them didn't like that. Ron is always on my side. And of all people, he has really surprised me. He is vital to Tim and I. (my four brothers live with my Mom including Tim).

OK, Thursday Ron and I take Tim to Therapy. Meanhile, We get Nursing Homes thrown up in our face. (he says he is going in one). Then he throws up he needs to be in WV. (where no one can take care of him). So, Guess what I did. I was so tired of hearing it.
I scheduled/set up with the Administrator a Surprise visit to a Nursing Home after Therapy. Needless to say he was cussing coming out of there!

When we returned to my Moms, I told him: You need to make up your mind. I cannot take much more. You decide what you want and that is the decision you will have to live out with. I can't help you from WV. I will give up my Power of Attny. for you.

Then Friday evening I was there filling up his Meds. for the week (after two afternoons of running his errands). And visiting with him. He tells me he needs Mental Health. Then Sunday night- I want even say what we or he discussed. (ive been sick all week) but does that matter? NO!

So today, I called th Doc. had her set up Mental Health appts. While I had the Nurse on the phone I said: I am on 25mg of Paxil. Not to mention all th other meds for my disabilities. I am not depressed. But, MY NERVES IS SHOT! Put me on something to help my NERVES or I am going to SCREAM OR DIG A HOLE AND CRAWL INTO IT AND NOT COME OUT! (she called me in some more med)

I know to most this don't sound like me, but I am had. I am doing everthing I can, except cure ALS. (and i am even involved with ALS Advocating).

If any PALS read this, please keep this in mind. (i understand not all are the same)

"CALS" suffer Symptoms to:

We carry a load to take care of you. (what ever it takes)(myself without complaining)
We feel pain when you don't know it.
We get angry with this Disease. ( not you)
We cry for you when you don't know it.
Our hearts are being eaten up like cancer.
Few of us have time for ourselves. (we are selfless not selfish)
We try our best to help you keep your Dignity, Will and Faith. (and ours)
We don't give up on a Cure for "ALS".
And we don't give up on YOU!

SO IF YOU ARE BLESSED TO HAVE A "CALS" THAT LOVES YOU DEEPLY. KEEP IN MIND WE ARE HUMAN TO.

We Love you with ALL our Heart and Soul!

"CALS" for my brother Tim,

Lorie

 

[sufernan]

The guilt hits hard if I lose patience or during those times where I wish that this was over. I wish it for him but also for myself. I think lots of people feel that way but don't want to admit it, because it feels terrible to admit. Human nature really kicks in during a crisis, doesn't it? ........... I never thought I would feel freedom at the loss of my father, he has always been my hero and it saddens me to know that is how I'll feel.


I love your honesty - this is very healthy. We all feel guilty for the feeling we have towards the people we love. I know and understand your feelings, you want realief from the pain for yourself and for your father - to me that is the sign of a loving daughter. I can tell you that now YOU ARE YOUR FATHER'S HERO!
Peace and Joy will be with you soon.
Sunny

 

[califsand]

Thanks to all of you that have responded to my post. It does help to know that I am not alone in my feelings and that maybe my honesty can help others to be honest with themselves as well.

The truth is that as a caregiver to someone with ALS, we all get emotionally drained at times, we all get frustrated and angry with the disease at times and we all get spread too thin at times. We wouldn't all have been compelled to come looking for support if there was no need for it and if we didn't care so deeply about all of this. It is very nice to meet you folks and to know that I am understood, by many of you at least.

Although things are hard and some days feel really hopeless, I do not regret putting myself out there to my father. I deeply appreciate the bond I have with him and the times we share (most of the times anyways) and would never take it back. My siblings actually are jealous of our relationship but have all confessed to me that there is no way any one of them could do what I am doing. What good is jealousy in the absence of desire? Seems silly to me...

Soon I will have to call Hospice back in and that will be a very hard decision for me. When I call them it will be like telling my father that I think he is about ready to die and what right do I have to slap him with reality like that? I do know that when he becomes immobile that I won't be able to physically, mentally or emotionally handle taking full-time care of him. He is too heavy for me to manipulate and at that point I think it will be best for him and I both that he be in the care of Hospice. It scares me though and I am sure that I will be in here a lot during that time, I'll need the support.

 

[califsand]

The guilt hits hard if I lose patience or during those times where I wish that this was over. I wish it for him but also for myself. I think lots of people feel that way but don't want to admit it, because it feels terrible to admit. Human nature really kicks in during a crisis, doesn't it? ........... I never thought I would feel freedom at the loss of my father, he has always been my hero and it saddens me to know that is how I'll feel.


I love your honesty - this is very healthy. We all feel guilty for the feeling we have towards the people we love. I know and understand your feelings, you want realief from the pain for yourself and for your father - to me that is the sign of a loving daughter. I can tell you that now YOU ARE YOUR FATHER'S HERO!
Peace and Joy will be with you soon.
Sunny

Thank you so much Sunny, I appreciate everything that you said here.

 

[CindyM]

I've been searching for words to say how how impressed I am with the level of support and acceptance I see on these threads. You guys are awesome! Cindy

 

[califsand]

I went on a vacation in the summer of '06, and my father didn't do anything about replacing me. He said they would get by until my return. Well, others weren't wiling to do what I had been doing. He had to sit in his own wet urine in his chair for a couple days. He was then willing to wear a condom catheter. I think if you say you aren't able to do some of those things you are doing, he'll have to make some changes.

I understand the feelings you have. I have them, too. I wonder how long I can do all that I'm doing. When I think of the years that could be stretched out in front of me, I am overwhelmed. I don't want "this" to be my life, but it is. It sounds terrible to say, but I want it to be over.

Mary Helen,

I completely relate to what you're saying and it is not a horrible thing to say. Do not for one second discredit your feelings! We all deal with it differently and I think that it is hard in a different way when it's your parent. If it was my son that was sick, I know it would hit me different because I've always considered my child to be my responsibility. I hadn't ever expected to be my father's guardian and it is different. As much as I love him and appreciate that I have the time with him, it is still a burden. Knowing that and being able to admit it, especially in THIS forum, is a sign of strength I think. A lot of people would deny those feelings because it makes them feel bad. Feeling guilty about it doesn't make it less real. It's just part of being human.

I want it to be over too and mainly for my father. Soon he will have no quality of life and that will be horrible for him. A proud man, like it seems the majority of ALS sufferers are, it will be like a form of torture to him to become bedridden and unable to communicate. I never thought I would want my father to pass on but the further the ALS progresses the more I know that I will rejoice for him when the time comes. And yes, I have to be honest, I will rejoice for me too in a way because it will allow me to have a chance to have some of my own quality of life. This has been going on for years now and the sleep deprivation is deep, I long to wake up in the morning and feel rested. I want to know what it is like to go for a day without worrying constantly about him. I want to have the opportunity to have a relationship with a man!

This time with him IS an honor but also a burden at the same time and dang, it's hard to cope with such conflicting emotions but know what matters the most? WE ARE HERE and WE ARE DOING IT.

Take care and if you ever want to talk, drop me a message.

Sandy

 

[sufernan]

Run countries

I agree - What a group of incredible people! if we were allowed to run countries, the world would be a very different place.
You are all amaizing, wise, loving and very very strong. Thank you for coming here and writting. For me reading your messages helps to open my heart.
Have a great day!
Sunny