Feeling so tired

[Blill85]

Hi,
My Mom was diagnosed with bulbar onset ALS about two years ago. This has been a very exhausting last couple of months and I feel as though I'm at my breaking point in caring for her. I am her primary care giver along with my dad and two brothers. I wake up every morning and think I can handle this, and by mid morning I'm ready to scream or throw in the towel. I am just not sure how much time she has left and with that being said I try to dig deep to be as nice and caring and attentive as possible. I'm just feeling so worn down. I've hired a part time caregiver to come in and give me some breaks but I think my mom is getting upset at the fact that I am leaving the house, and I feel guilty about that. She doesn't want me to leave her side. This is just really taking a toll on me. I try to think how she must feel and I know that must be far worse. I think we are both Feeling different levels of selfishness at the moment.
-B

 

[cheerleader]

It's not selfish to recognize you have needs, too,and as a caregiver you must take care of yourself or you'll be useless to her. So sorry this is such a difficult time. We can all relate.

 

[Annie's Phil]

A very warm welcome to you B,

Indeed, all of us who have walked this path understand the physical, mental, and emotional exhaustion that progresses as a result of the earnest desire to faithfully provide the best possible care to the one that you love. You're also probably feeling ripped in two by not wanting to lose your beloved mother, on the one hand, and just wanting this ordeal to end on the other. What we really want is that our loved one would be well, but the brutal fact is that we are not offered that choice.

I was keenly aware in both the case of my mother dying of cancer and my dear Annie dying of ALS that I would only have one opportunity in all of eternity to care for them, and regardless of my earnest desire to do it perfectly, I was constantly aware that I fell short of what I ought to have done and been.

A great deal of the stress and exhaustion comes as a result of not knowing how much longer the ordeal is going to last, and it's easy to envision that it will perpetually grow worse and that there will never be any relief. But I can assure you from my experience that it will end, and when it does it will seem a lot shorter then than it does to you now. And when it is finally over I suspect that you'll wish you could still be caring for her. The difference is that you will no longer be exhausted by the constant demands, and the new reality of the finality of no longer having the presence of you mother will diminish the difficulty of what you are currently enduring.

Please be encouraged. What you are presently enduring is very difficult, and you are doing well in the most trying of circumstances. It is the darkest of nights for you now, but morning is coming, and when it does things will look very different - and you will be changed.

Much grace, endurance, and peace to you.
-Phil

 

[Barbie]

Oh Phil, that is so beautifully said...I am glad I read it and reminded myself.


B--it is not selfish to need a break. good for you for hiring a part-time caregiver! I suggest that you do get out of the house at least once a week for the whole day, if not more. it will replenish your spirit to have "me " time and everyone deserves it. You will find that you will be a a better care giver if you get breaks from the stress.

Also, do you have a counselor or minister that you can talk to? sometimes talking about your guilt helps you let it go. you have to let the guilt go because after all you are only human and humans are not perfect.

 

[NeedCourage]

Phil, your words are just what I needed so thank you for your caring and encouraging thoughts. I've been crying on and off all day today - first time in awhile. My sweet husband took a loss in abilities today. Seemed out of the blue but of course it happens gradually, I suppose. "Suddenly" he cannot use the stairs. His torso is getting so weak and I'm terrified of the future because I can't imagine how one old lady (me) is going to give him all the care and support he not only needs but deserves.

As you said, "I would only have one opportunity in all of eternity to care for them, and regardless of my earnest desire to do it perfectly, I was constantly aware that I fell short of what I ought to have done and been." That drive for being more than I am is so draining - and of no benefit. We all do the best we can.

Blill85:
I admit to being envious (not negatively, as in jealous) of all the help you have when I'm here alone, but isn't each of us ultimately on our own journey when it comes to handling this situation? Yes of course.

I wish strength and courage to all my fellow CALS; my heart goes out to each and every one of you. We are in the fight of their lives.

 

[cheerleader]

Phil, I have reread your note half a dozen times and cried each time because it is so spot on! After ALS, the CALS is Forever changed- and so grateful for the privilege of caring for one you loved. Just read an article that after such a loss, you have to reinvent yourself and discover a new you. You are not the same as you were as part of a couple (or a son or daughter!). But morning DOES come - and those hard and exhausting hours of care you lovingly gave will seem like a short time compared to the time ahead of life without them. Like "needs courage" I wish for strength for us all. Donna

 

[poppies]

Hi B, I can so relate to how you are feeling. I am also feeling exhausted. I am my husband's only caregiver and there is no such thing as a break. Phil, thank you for your kind words and insight.

 

[Blill85]

Thank you all for your kind words of encouragement. Phil pretty much described how I am feeling spot on. I started this journey not fully realizing how difficult this would be for me, but just knowing this is what she needs and I have to be there. I am only 29. I luckily am not married and have no children. I moved home for the first time in almost 10 years. My one brother has epilepsy and the other is a bipolar addict. So on top of being moms
Full time caregiver there is ALOT of drama. Too much to handle on top this very traumatic time in our lives.

I am thankful I was laid off from my job in January. Literally a day before my
Moms peg tube was put in. I honestly don't know how I could have gone back to work after that. It has been downhill sense. I am one to look at the bright side of things but with ALS there is no bright side. I feel I will only find comfort in this being over for her because I know how over it she is. She has asked the hospice nurses how much longer on multiple occasions. It's beyond strange to hear this conversation from the other room. I find myself looking around thinking "Is this really happening?"

Something that really set in the other day was how my Mom has drastically changed in a matter of months. I just can't believe it somedays. How progressive this disease can be. How it's taking my Mom from me before my very eyes. Everyone is always telling me
How strong I am, I don't feel strong at all. I feel like I am just
Doing what needs to be done and am seconds from a nervous breakdown on a daily basis.


My Dad told me last night he doesn't think she has much time left, yesterday it became apparent that she is starting to lose control of of her bowels. I just still can't believe this is really happening. I hope I can find the strength to get through another day. And I wish I had found you all sooner.

Better late then never.


Sending you all positive thoughts for the day.

-B

 

[MaxEidswick]

>I just still can't believe this is really happening. I hope I can find the strength to get through another day.

Ditto that!


>And I wish I had found you all sooner. Better late then never.





Max - Tuesday, April 21, 2015 11:33:32 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[AKjo]

I was keenly aware in both the case of my mother dying of cancer and my dear Annie dying of ALS that I would only have one opportunity in all of eternity to care for them, and regardless of my earnest desire to do it perfectly, I was constantly aware that I fell short of what I ought to have done and been.-Phil

Phil! I have been rattling around on this site for quite a while. Your Annie had such a gentle, spiritual soul who always knew the right thing to say to encourage, educate, or console the other members. I could also tell that she always felt cherished, loved, and confident that she was getting the very best care from you. Rest assured that she did not think that you "fell short" and was grateful for your tenderness and devotion!

True, I didn't know either of you, and though she has been gone for over three years, your and Annie's posts made such an impact on me that I still think about the enduring respect and love you guys shared, evidenced most recently by the anniversary greeting you wrote to her last month. I want Gary to feel the same commitment from me.

 

[rosec]

Phil, I needed those words today. Thank you so much.

Blill85, I can identify with your feelings and emotions. Tell your mother that you need to take care of your self so that you can be a better caregiver for her. I am sure she will understand.