Dad is really sick right now

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I hope you took my comments in the spirit they were intended. This is a terrible disease and sometimes difficult choices have to be made. I wasn't trying to sound callous.

AL.
 
I know Al and I'm sorry my response sounded so frustrated. I'm having a hard week, overwhelmed and I think that I'm feeling sorry for myself and it is making me angry with the world. Not a good mental space to be in for me, it's the onset of a major depressive episode. I'm aware of it and tried to combat it with spending the day outdoors with my 8 & 9 year old stepkids today... we explored 3 very different parks and had several adventures. That is a side of me that hasn't had much of a chance lately and my time with them has been EXTREMELY limited because of work & Dad. It helped, I need nature & nurture... kids & outdoors. I want more of those days and feel so stifled by others demands. It happens, being a caregiver is hard & sometimes you pass the point of where you can handle it. I'm at that point. My life isn't my own and hasn't been for a while now and there really isn't much about it that I like. Thinking that way makes me feel guilty but it's how it is.

I love my Dad but I can't do this much longer. Lately I feel like I won't be able to have any control over my life until he is gone. I can't give him permission to let go because I think I would be doing it for selfish reasons. It breaks my heart to see him like this but it breaks my heart also to see how much his illness controls me. I can't be free until he is free... I cannot attempt to be happy until I no longer have this responsibility. It sucks to know that and admit it but it is the truth. There is no quality of life anymore with the ALS, not for him and seldom for me. It rules me. I can't go away and take a break because it is with me where ever I go and I get the phone calls, nobody else has the courage to make decisions and Dad doesn't trust them to do it anyways. I want him to let go, want his suffering to be over more than anything in the world and in turn, I want my life to be my own. It sucks to be human and to feel like this. I feel guilty even telling you these feelings because I know that you are on the other end and it is not fair. Nothing about ALS is fair... to anyone.

I'm sorry, I'm losing my mind and don't mean to take it out on you or anyone else here. I know there are some here who relate all to well and I know that there are some here that probably don't have the weakness I do of feeling it is a huge burden to be in this role. I didn't used to feel that way and I have really treasured my close relationship with my father. I wouldn't take it back or change my choices, I have sacrificed many important things to be there for him but I'm tired and I'm past my limit right now. I want to run away and leave the family here to cope... and pretend I have amnesia! That would be the greatest thing ever! But I can't and I won't and I'll find yet another way to make myself cope until my next meltdown. Unfortunately my meltdowns are coming closer together & I fear that before ALS finishes destroying my hero that it will destroy me first.
 
Sandy,

You hang in there girl!

Your Dad is lucky to have you and so are your brothers! At least you have made the effort to comfort your father as much as you possibly can. That is what counts.

I hope you know that we do understand where you are coming from and we are thinking of you during this difficult time.

Please let us know how you are doing!
 
Sandy, I don't know if this will help or not, but I couldn't bring myself to say those words, either. (about it being OK to just let go, etc.) What I said to my father was "I just want you to know that if I had it to do all over again, I would still take care of you. You have fought for a long time." I think he appreciated hearing that if I knew what I was going to be in for, I would still have done it. Mary Helen
 
What wonderful words, Mary Helen. My Mom told us last year that she wanted to "go to heaven now." We told her we loved her and that she was a good Mom, good wife, good sister and daughter and then we told her she could go whenever she wanted.

I know how you meant it, AL. Sometimes people need permission to go on. And I heard sometimes they wait until they are alone, not wanting their loved ones to be present at the time.
 
I've told my father similar things to what you said Mary Helen. We have had lots of talks, well with me talking anyways lol, and I have let him know this repeatedly. He's been in Hospice since October and about once a week I'm told to expect to lose him within a week or so... and I've made a point of telling him how I feel. I have not said the words to him "it's okay to let go" but I've said it to him in other ways. I am just at a point where I can't handle it.

It probably doesn't help that there is a new nurse that has been there every single time I've got to visit for the past week and because he saw me bantering with a nurse he was training with he thinks he knows me well enough to be that way with me too. I don't know how to tell him that his familiarity with me is offensive! Also, the past few times I've gone to see Dad his tv is on things he would NEVER watch and the nurse said "he wanted variety, when I put it on these shows he blinked his eyes". Last night when I got there Dad was watching a hooters contest, NOT something he would watch for more than 5 minutes normally... but the male nurse said he wanted it. I put it on animal planet and Dad's face lit up because he LOVES the animal shows. The nurse got a disgusted look on his face & left the room. Thing is, my dad could operate the remote until just a few weeks ago and he only alternated between 4 channels & has his favorite stuff. Yes it's routine but that's what HE likes... and my Dad is OCD so variety isn't his thing.

This annoyance is one of those things that makes me want to just walk away, I get tired of everything always being a struggle & argument, negative, work... ya know? I'm just tired guys and it makes me hate my life. It's a phase I'm sure and I will work through it.
 
We know you will, too, Sandy. It is just harder to do some days. I wish you could get a little rest.

PS: good for you for sticking up for your Dad. Even without the OCD, he shoudl be allowed to watch what he wants. But changing things up on him at this point in time is plain mean, if you ask me.
 
When my mother was on Hospice and even before I made sure there was a sign in her room with things she liked Very specific. She did not have ALS but a form of dementia. Even still she knew what was happening at the moment. Most hospice workers were very attentive and loving. But there was one that sounds the same as the one you are having trouble with. He kept going out to smoke. The workers where she lived saw the problem and made sure she was not alone. She had lived there so long they were very protective. I think even hospice workers don't get it that someone with ALS is "in there" and totally knows what they are watching and what they want. Your father is very blessed to have such a loving family.

Sharonca
 
Hi Sandy,
You are really having a rough go, and I know what you mean and what you're going through. Two weeks before my husband passed away from ALS, I remember phoning my Mom and crying cuz I just didn't think I could go on any more - the hardest thing I ever had to do was care for my husband when he was ill, but I'm glad the kids and I got to. They are precious moments we'll never have ever again. Two days before my husband passed away he told me he didn't have much time left, and would one of us please be home cuz he didn't want to die alone (with the nurse or aid), and I told him we'd make sure one of us was always there, and that if he was too tired to go on, and to fight, that it was okay to let go cuz I couldn't stand to see him suffering so (we had just had a horrible weekend - he had pneumonia bad again, and we had almost lost him as he couldn't breathe). That was so hard to do - no matter how ill he was I sure didn't want him to go, but I think he really needed to hear from us that it was okay - he was so much more at peace, not so anxious. It took a long time for me to be able to tell him that, and maybe the time isn't right for you yet. I am still amazed at how long my husband was able to hang on - he went through so much - bad pneumonia twice, two heart attacks - but there were certain milestones he was determined to make. He wanted to be there for our kids' birthdays, and our 25th anniversary - he passed away that day. Maybe your Dad is waiting for the new baby - will to live is an amazing thing, and it sounds like he has it.

My thoughts are with you, and I wish you strength. Peace to you.
Beaner
 
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