I'm worn out & tired !

[DaughterofanALSpt]

Hi I'm a 23 yr old caregiver of an ALS pt. My mother. My mother was Dx in 2005 she has beaten all the odds. She is totally helpless. Has maybe 10% mobility which is still chewing n swallowing (although getting difficult) on her own & can still manuever her electric w/c. Me n my dad take care of her. & my grandma. Idk why but latly I'm just starting to feel the toll on my mothers ALS.Im tired of caring for her. It's so hard & I also have a 22 month old little girl I take care of & I go to school n work part time. I dnt knw wat to do anymore. I want to put her in a nursing home. But I feel like god is going to punish me for being tired of my mom n wanting to get rid of her. I find myself getting angry everytime I have to do something for her. Y am I angry? Why is it hard for me to just have the strength n soft heart to feel sorry for her & wanting to help her. Idk I'm new to this && I just wanted to know if any other care giver feels like I do.

 

[pepsiman]

DaughterofanALSpt,
Five years is a long time to take care of someone, especially for a young mother. I can't speak for other caregivers but yes, I got tired of taking care of Liz. The only way for me to lift myself from those depressing moments was to mentally put myself in her place. She didn't want to have to be taken care of either. In my case the total care was really only for about nine months but the first five of those months were the most difficult days of my life. At some point I found acceptance of our lot and managed to find some peace. A nursing home for us was never even considered, I couldn't have done that to her, but after five years? I really don't know. I still feel some modicum of guilt for my thoughts during those most difficult times but I can balance it with the fact that regardless of how I FELT, I did the very best I could for her until the end. Is there any way you can step away from the situation for a little while? Maybe bring in a little outside help? When I finally hired a private nurse and found a way to get eight hours a week away from the situation, everyone benefited from my better frame of mind.
Dick

 

[Miss]

Dick is absolutely right. I am in my sixth month of caregiving - the last two months have been full time. We are waiting on some paperwork to go through and then I can get some respite care. This is hard, the hardest thing I have ever done. Much harder than having, caring for and raising children. I am exhausted. You are not alone. Like Dick, I know I am giving the best care I possibly can. That doesn't mean I don't have bad thoughts, though.

 

[irismarie]

Darling friend, You have done wonders already.. Remember you are human not SUPERhuman and there are limits to everyone's capabilities
rea
You would not really believe in a God who would punish you for being what he created? A fallible human being? One who has given so much love an courage.

Really try to get other help and have some rest. NO point in YOU being ill, too.

I am sure your anger is also caused by seeing your mother in the state she is and not being able to change it. And there is nowhere to direct that anger.

Get help if you can.
You are not bad, it is the disease that is bad
Much love to you and yours

 

[pepsiman]

I hope I don't offend here but "god is going to punish me". Isn't your mother having ALS punishment enough? Sorry, I just don't buy it. If that's the sort of God we're dealing with I think I'd rather not believe. You are going to punish yourself much more than any compassionate God would ever punish you. Hell, you already are, just by asking the question. Do the best you can, do what you know in your heart is the right thing. If that means putting your mother in a home, then so be it, as long as you can live with the decision you've made, then it's the right one. Maybe I'm going to hell, but if so, the god sending me there isn't one I want to spend eternity worshiping anyway.

There, now I've said what I really think! God bless, prayers to you, and all that other hoopla (no offense meant to anyone).

Dick

 

[charlene777]

I have just started this journey of helping and caring from my mom with ALS a year ago. i have two small boys ages 1 and 5 and its very difficult how to plan my day since there is horrible guilt if it is not spent helping my mom and the same guilt not taking my boys to the park. I am trying to find balance but from what I know- things are only going to get more difficult and I barely can handle what is going on now.

 

[ghii]

People ask me how I am and told me I must take time off, go to lunch with friends, get out of the house etc. before the walls cave in on me. I thought, nah, I am fine. I have my garden, my books and beads. I am fine. Tonight after dinner I suddenly feel on edge, on nerves. I could not do anything, did not feel like doing anything and went to meditate. I fell into meditative sleep and got out of it feeling better. I understand about giving till one has nothing left to give yet mine is just a touch of it. I still have it easier than most. By nature, I am patient and long suffering which helps.

It helps reading about the necessity of taking respite care. Hospice offers 5 days. I hope I will be able to take advantage of it one of these days.



ghii

 

[hopeful warrior]

Just reading your posts tonight has brought me so much comfort. I have questioned myself repeatedly lately. Thank you for your frankness and honesty. Your words are a peaceful rain on my spirit.

 

[joelc]

The need for a CALS to get out and have a break is one reason I keep saying we should not have moved. She does not know anyone here except our children. It was a big mistake moving away from people she knew. It breaks my heart!

After 3 years I finally got her to join a Church Bible study, but they are not going to have any meetings until the fall.

Please CALS, get out and create some kind of life away from ALS and all the responsibilities associated with caregiving. You need it!

 

[sadiemae]

Joel, sometimes the "friends" go away after DX, even if you are in the same town still. HUGS Lori

 

[LauraW]

I totally understand how you feel. I have been caring for my Mom for over a year now and if I did not have my husband and my Dad to help I could not do it. I have felt the way you do, except for the thought of a nursing home. There are days when I can do nothing but cry. Last night I hurt my shoulder helping her with a shower. I think, how am I going to do this as she gets worse? I just pray daily for God to keep giving me the strength. I am trying to plan a weekend away with my husband...hard but we have not spent much time out together except a couple of hours here and there. I will have to pay someone but I have to do it. Try to get some time away and know that this is your path and you will be rewarded. In the end, it is your decision. For me, I just remind myself daily how she feels and that if it were the other way around she would do everything to care for me. God Bless you!

 

[joelc]

Joel, sometimes the "friends" go away after DX, even if you are in the same town still. HUGS Lori

I understand and totally agree. What I am suggesting is if my wife was still in our home town she had friends of her own, they were not mine or ours, so she would still have them as they did not even know me. It is deathly lonely here, especially for her as she had a life of her own before.

Friend that were both of ours left a long time ago and that is one reason we agreed to move - we did not have any friends anyway. But I owerlooked the fact she had friends of her own.

 

[Miss]

We have been so lucky with friends.When we took our daughter to freshman orientation, 15 of my husband's close college buddies came to town to see him. (One took scap wood and built a ramp so that my husband could sit out on the patio). It was absolutely amazing. My husband had no idea he was so loved. Very few friends have "slipped into the woodwork" as we say. Most are right here and ready to help. The hard part is asking for the help! I do gratefully accept the dinners they bring. It is one less decision I have to make at the end of the day! I've learned to ease some of my our friends through the process of dealing with a terminal illness. It is just out of so many people's comfort zone. If my husband and I make a concious effort to put people at ease, it seems they are more inclined to come back for another phone call or visit.

 

[mare]

Miss-

Have you looked into the Share the Care Program, or Helping Hands, or online programs like that? From what I understand, basically you list what jobs/chores need to be done and your friends go online, select what they can do/ are willing to do, and sign up for that task. Some programs have a coordinator (appointed by you) to organize this.

With all the friends you have, this seems ready made for you. Relieves you of feeling like you are "asking for help"; gives friends specific things that would be helpful that they are willing to do. I know there is a link on the ALSA website giving more details.

Check it out; might be helpful to you. Good luck!

 

[joelc]

It is a good program but out of all the people I know who have tried to get this going the are only 2 that have been successful.
It is worth a try.