Losing myself

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Hoosier, That was my life for the last year. Requests, demands,apologies sometimes, more demands. It was so difficult. The part that was us, a partnership and a marriage, was dissolving...at least that is how I felt. Driving everywhere, doing all the household needs, and getting critiqued. I dont miss that.
 
Hoosier and Gooseberry- not sure if it's the disease or my husband, but one day when I went off about how please and thank you go a long way he told me that he wasn't going to say thank you for every little thing. I nearly said well then I'm not going to answer every little thing. I didn't, but wanted to. I totally get the annoyance of moving a leg and then moving it that extra inch just moments later. I've tried explaining to him that he doesn't understand completely what I'm going through anymore than I can completely understand his position either, but that didn't help either

And yes it doesn't feel much like a marriage anymore. Demands mostly without acknowledging what we do. The strange part is, he would sing my praises to others, but never gave me a nugget to get energy from. Now he can't talk. We will see what happens once they get his Tobii going.

I too am thankful I found this site. Better late than never and now I know. Have found others who understand. Thank you all!
 
Hoosier, You made me LOL with the princess and the Pea. So true! Im glad to hear I'm not the only one who can't do anything right. The mask is too tight, 5 min later too loose. One time I pretended and didn't move any thing but it was better for 30 min. I get it, it hurts his ears but No amount of adjusting fixes it. I really wish I could... :)
 
I am on a flight to the west coast to visit my sister and mom, and to have a few nights uninterrupted sleep (oh please oh please oh please). I just finished reading Tillie's book, and this thread and her story have much in common.

I've had the book since it was released but have been unable to finish it until now. It is both captivating and difficult. It is frightening, and reassuring. Most of all, it is honest. I've read several books about ALS and this is the most honest so far.

Tillie's Chris had a very swift progression, but she lived a lifetime during those months. If you can handle an intimate journey through her experience, you'll finish it knowing that even the most loving and giving among us shares these same concerns.

Overcoming a loss by 1000 Deaths by Katrina Jeffery. If there is anyone in your life who doesn't understand, have them read the book.

Becky
 
what is the title and author of "Tillie's Book."
I am new here, newly diagnosed PALS.


I am on a flight to the west coast to visit my sister and mom, and to have a few nights uninterrupted sleep (oh please oh please oh please). I just finished reading Tillie's book, and this thread and her story have much in common.


Becky
 
Hi Betsy. It's called Overcoming Loss by 1000 Deaths by Katrina Jeffery
 
I would constantly remind myself that I could not imagine for a moment not being able to move even an inch. How many times, when sitting or laying down, do we subconsciously just reposition an arm or leg the tiniest bit?

As a CALS, getting Chris 'just right' was what you all describe. I would work for 15 -20 minutes to get him 'just right', put equipment away, tv on, and look at him and ask "all good"? He would shake his head. I would have to start the guessing game (he couldn't speak) - feet? legs? hands? arms? shoulders? neck? ummmm what else is there - oh pillows? ok which one ... left leg? right .... you know the drill.

And as I would leave the room exhausted, probably about 40 minutes later now, I would think, what must it be like for him?
Hell I'm sure.
My back would be aching, my heart would be torn up, and the exhaustion would nearly drive me to tears.

But it's the loss of the relationship isn't it?

You do those 100 minor adjustments, they frown, grunt, roll the eyes, you guess what each means and try again. Then, for me, Chris would just kind of nod and turn his eyes away from me. That was the signal, yeah you finally got it right, go away now. I would put my face in front of him, look him in the eyes and kiss him. Mostly he would just freeze and be a stone. But I would walk away then and kind of shrug my body from top down to the toes to release a bit of tension and wonder how was I going to get up and do it all again tomorrow. Then forbid myself to think this, just go have a shower girl, tomorrow isn't here yet ...

I say all this at the risk of other PALS reading it and taking what we say the wrong way. We all love our PALS deeply, but we must let off some steam.

If I had my time over - would I do it all again for Chris anyway? You bet I would.
Did I feel at the time like I was not going to survive it? You bet I did!
 
"I know my PALS has it much worse"

No, we do not have it worse! I know this is a CALS discussion and I apologize if I am intruding.

Your lives have been so hugely changed by what has happened to us that it is unimaginable. All of you give and give and we just take and take and constantly need more and more. Yes we cant help what is happening to us but that does not change the reality of what is occurring. Physically you meet our needs, while emotionally we destroy yours.

I think often about Love and what it is. I try to base my decisions on these thoughts. What I have concluded is that; Love is the act of serving the object of it without any concern for yourself. So I try each day to not and put anything on my dear wife that would add extra burden to her day, I try and tell her how much I love her and how thankful I am for her, and not only do I try and tell her, but I will also try and show her by not using devices that will unnecessarily extend my life, and by doing everything I can without her help for as long as I can. And maybe as important, I try not to complain, but listen to her and try and see what she needs. I "try" to do all this, I fail often, but this is how I will fight this monster.

I am not as physically depleted as many of your PALS I am however nearing the end. I consider it a good thing to have had respiratory onset so that my hands, arms, and legs might still work until the end (I am starting to doubt that though). None the less I would admonish all PALS to consider their loved ones before themselves. To not be so selfish, to realize that while they are busy feeling sorry for themselves they are hurting someone else.

I hate the word "Hero" as it used way to often in our society and has lost all meaning, so I will refrain from using it. That said, you are caring and wonderful people, you need our help, and we just need to stop looking so much at ourselves and start trying to find ways to love you.

-peter
 
Pete, as you know my Chris had FTD. So I never saw many things that happened as being 'him', but the added disease he had.

If he would have only told me now and then he loved me, it would have gone such a long way. I am so glad you tell your wife this often.

And really it's not a competition is it - who has it the hardest? Don't matter a toss - both PALS and CALS have it the hardest. You PALS need to let off a lot of steam about how crap this disease is, just like we CALS have to xxx
 
Peter:
your post really made my day. I know my Pals would say all that if he could. I do notice him sometimes suffering and trying not to "bother" me I just forget sometimes. Thank you!
 
My pals was diagnosed in 2009, my mother in law. She became displaced and I had to suddenly become the caregiver. It has only been 7 months, I work full time, I'm exhausted, and I already had a breakdown. This is not easy and she has no use of her arms, she needs everything done for her 24/7. I feel for all of you, so sorry.
 
I cannot be a caregiver anymore, 2 years of this, he progressed very fast and in just a year ago he lost all movement, can't feed, bathe,mod not one single thing for himself. It's been 2 years and I honestly don't have even 2 weeks left in me to do this. We have 3 small children, one that isn't even in school yet. He is a verbal abuser and plays mind games with me. That is why I cannot, will not do this. I know it's selfish, but I don't want any part of Als at all. But he cannot live in a facility or get 24 hours care, as we would lose our home, cars, and be out on the street. The government takes everything. I am lost and have no life, I want to take my kids places, but we can't even go to a simple park for more than a half hour or I get yelled at by him that we were gone too long, or I ignore him. It's so hurtful. And he makes me do sexual things to him and I cant, and don't want to, but if I don't I'm in for a really rude grumpy pals the next day, or that night. Why am I being punished?
 
Tracy,
Im so sorry for you. I wish i could help you somehow. Have you checked out your local ALS chapter? Have you asked his Doc to put him on hospice. That would at least give you some respite time. Sometimes you need to put your foot down, and just take the kids to the park for a little while and if he acts like a child then yell back at him. Sometimes thats all a bully needs. Does he or you have any family or clergy that could help?

Im sending you a virtual hug. i would def check out the ALS chapter, ours here has been invaluable.
 
When my wife was diagnosed, I did some research about this disease and the first thing that you learn is that "The average survival from onset to death is three to four years". Of course this does not cover the fact that if the patient is ventilated and feed thru a tube, they can live many more years like this. My wife is young (41) and otherwise healthy, so my initial expectation of living a very tough 3-4 years has now turned into an expectation of a very tough 10+ years (or more?). It has not been easy to come to terms with this, and I am still trying. I also have a feeling sometimes of slowly dissappearing behind my wife (or my wife´s needs). To add to the sensation, I am in a country that is not my own, and I am away from my family and friends.

It sure helps to see, through this forum, that I am not alone in feeling like this.
 
This thread is striking such a chord in me. I am in my 12 th year of care. Now I also care for his 92 year old Dad who lives 10 minutes away. He has Parkinson's and is 92. Between the two of them I am kept busy. I have lost my identity a bit but my friends are pointing the direction to making sure I take care of myself. Of late, M's speech has deteriorated and his spasticity has increased and begins to impact all aspects of his life. He is now looking to his future and seeing his illness for the monster it is and he is scared. His mood is unpredictable. There are days where we seize the day as it were. These moments are getting fewer and fewer. So to read of others struggles makes my guilty thoughts less guilty and helps me get on with my life knowing I count too as do all of you have posted. Tripete thanks for your perspective it means a lot.
Anna
 

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