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NeedCourage

Active member
Joined
Feb 22, 2014
Messages
73
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Hi guys,
I am an infrequent poster but avid reader. Expression does not come easily as I've always been very private.

I finally decided I'd better express some junk that's in my head and heart or I'll implode, explode or melt into a witch's pile of goo, as in Oz.

After reading all the beautiful and exceptionally loving Cals stories here just now - I can't.
I'm ready to quit my job as a full-time 24/7 Cals. I can't do this. My body is as broken as my spirit, and "NO" I don't have outside help yet. Been trying for many many months. Still working with State agency on aging.... It takes forever and I've run out of steam.

I guess that's all I can say. Lost my nerve.
I do love your stories of joy - my feelings have nothing to do with yours....
Keep on finding happiness if you can.
I admire you all so much. I'll probably feel very guilty for even doing this... lol.

Nancy
 
Get in touch with your ALSA as soon as possible. If your PALS is a vet go to the VA. There's no reason you should have to do this alone and have to fight to get help at the same time.
Vincent
 
Nancy hon this is not an easy journey, it's not even a hard journey - it is THE hardest thing anyone can do!

What are your options? Is there a facility that your PALS can go to so that you can take on the role of secondary CALS letting them do the hard stuff and you be there for him as you can?

Don't get bogged down in guilt or thinking you are less, you can only take the role of CALS if it is sustainable. I had help and I was exhausted both physically and emotionally and it was only 11 months! I admit, I don't have a lot of stories of joy during my time as a CALS, FTD robbed us of that.
 
Nancy, never feel guilty. Did you ever get a lift? A hospital bed?

Are you in touch with the ALSA?

I don't know how I'd do this alone. Please "talk" to us. Venting is cathartic.

Becky
 
Being a CALS is like being on a forced march with a gun to your head.

It's terrible. Of course you'll fall down. But no one could possibly blame you for that.

Don't feel guilty over something you have no control over.
 
Nancy, Just do your best. Cry ,vent, let loose if you need to, whenever you need to. Somedays I sit hear and read and cry. I feel desperate too. On those days, I try to get thru the day hour by hour. Your last resort is always calling hospice or a trip to the er. You matter too.
 
Nancy, it is very hard for me to read your post and not wish I was in PA to have a cup of coffee or tea with you and hug you. I can tell you that not all of us on here think we are loving CALS all the time. I have had several moments where I have asked myself why am I doing this to myself and have daydreamed of running as fast and far as I can. This #$%^ is harder than anything I have ever had to do or go through and trust me I have had some major struggles in life and have always had to take care of someone.

What I do know is that I have had to ask for help and think there is something that can be done to help you. I can tell from your post that you are dealing with a lot of guilt. You should not be sorry for feeling this way and everyone on here would agree with me. There are a lot of stories on here from loving and wonderful CALS who I believe are just like YOURSELF. I have at times felt that I can never be as loving or strong as they are. I may never be but everyone on here has helped me to do better. They have given me wonderful ideas when I have come out and asked.

Please don't feel so guilty that you do not continue to post here. Maybe just try one last risk, post the issues you are having, ask for help and advice. I honestly do not believe I can find any better advice than on here. I also think, that you do not want to make the decision to walk away. You are exhausted and your spirit is gone. You are important in all of this and you need help.

I so wish I could do something to help you. I understand what you are feeling and have been at that point so many times in my life with my mother, sister, a child and now my husband. The weight on your shoulders is so heavy. If you ever want to talk PM me and I will be there for you as much as I can and it does not matter what decision you make.
 
Hi Nancy,
Like you, I had a hard time getting any help. It's a tough, tough road to travel by yourself. I can't tell you the number of times I said to myself, "I can't do this anymore". But somehow I did. One step at a time, one day at a time. sometimes with a grimace on my face, sometimes with a smile. I felt so guilty I couldn't just be that perfect supportive caregiver all the time. My heart goes out to you. I wish I could give you a hug and say it will get better.
 
Hi Nancy, I just wrote a nice long post to you and then my pug jumped on my lap and pressed my mouse pad, deleting everything!? So here I go again! Nancy, please don't think you are different from other CALS or not good enough. We have all been where you are right now. Feeling like we can't go on another day. The joy shared on this forum is a reflection of the flashes of light we experience in the darkness that is ALS, it is the moments that give us something to focus on on this bewildering journey, but they are more often than not very hard to come by so you are definitely in the right place in the space you're in right now. Getting help is a necessity, whatever it takes. I have only just started the process of getting help, yesterday was the first day and she just came to observe. She will only start in January but I am SO looking forward to not doing this alone anymore. Please keep sharing with us and let us know if you have found a solution in your situation. Sending you love and hugs.
 
My dear fellow CALS,

Your messages were devoured by me when I returned here. I was really touched by all the kind and wise words expressed; I don’t feel alone tonight.
This forum truly is an oasis in the desert, and I shall do my best to utilize it’s gifts more frequently. Just a few thoughts:

VINCENT: Thank you. Your quick reply was perfect. I’m finding more and more that ‘alone’ is never the best way. We have been involved with a Clinic in Pittsburgh but since Toby “lost his legs” a few/couple? of months ago, I have not been able to get him into a car! A few people have stopped by to see him (but not enough in my opinion)…

TILLIE: Always with great ideas. I never thought of the concept of a ‘secondary’ CALS -I’ll look into it. Oh, Tillie, how horrible to have to deal with the FTD on top of the physical ravages… I am blessed in that my Toby is still Toby 100% mentally, spiritually and emotionally. He's gentle and funny and very smart at 78 and going strong. He just doesn’t have very many muscles! : ) I think at 65 I’m in much worse shape than he is - at the moment.
What a crazy life.

BECKY: The ALS ‘closet’ in Pittsburgh is working on loaning us a lift to experiment with. I was actually looking on Amazon! (yep, I was) at several lifts just to read comments and questions. There was one that seemed a possibility: a Hydraulic Patient Body Lift by Invacare 8905P for a reasonable $390 without any of the necessary accessories. So I remain curious and trying desperately to stay informed and ahead of the devil that chases me and T.

ATSUGI: You said it so well with few words! I especially appreciate and repeat your words, “…something you have no control over…” I do believe you have pointed out a huge pitfall I am in - trying to CONTROL ALS! How dumb can you be and how self-defeating. Thank you for sharing.

STEPH: As always, your words comfort and ease my overworked mind. You make me feel ‘normal’ and for that, and your friendship, I am eternally grateful.

S.WIFE: Oh, how I would LOVE to sit over a cup of coffee with you, and know deep in my heart that the eyes I am looking into belong to someone who truly understands the situation and has a warm and loving heart. I long for such an experience. You shared so openly with me, and it really helped to read your thoughts. Yes, guilt is definitely an issue and an old nemesis - a lifelong battle for many reasons. I am going to really work on accepting myself JUST AS I totally accept my PALS - unconditionally. (Probably won’t do that well - but it’s a worthwhile goal. Right?)

PDCRAIG: Boy, you said it!Did I write those words, also? Felt like it as I read… I gratefully accept your cyber hug and am actually smiling right now.

POPPIES: Thank you for your sincere response, the love and hugs. I, too, look forward to some assistance - perhaps early in 2016, too! Wouldn't that be grand?

Each of you gave me a piece of yourself and that is the greatest gift: friendship. I have been alone for much of my adult life and am only now realizing how very important interaction with other people is…

I genuinely thank you, each one individually, and as a group … for reaching out. It’s a magnificent gift.

Giant Nancy-type hugs to all!
With love.
xoxoxoxoxo
 
Please don't ever feel alone Nancy! We are all here for you! This road we all travel together isn't smooth. Lots of potholes and ditches but we help each other. If you need a laugh, read a bout big girl panties in humor....we all just needed to laugh the same day so we got silly. Hugs to you and Toby.
 
Nancy, I cried reading your reply post to everyone. You don't know how much you were able to help some of us. I have had so many struggles with all of this and it comes in spurts. A few good days in between to generate my soul. This truly is a family here and I look forward to spending time with my new family everyday. This is a very hard road we are traveling together. We are at different points in the road and when we come to a curve, rough spot or just get frozen in place we can count on someone here to meet up with us and guide us. Like Steph said perfectly "we help each other".

I to have suffered with guilt over my lifetime. Looking back it was because I always so desperately wanted to things to be better for those in my life and something you just cannot change or make better. I have had so may points in my life that I wanted to run as fast as I can but I always held on because I did not need giving up to add to my guilt trip. I work every day to do better at accepting myself and knowing that I am indeed an ok person.

The response you posted shows what a wonderful, kind and caring person you are. I also saw that in your first post. That is why we put so much pressure on ourselves. We want control and this disease does not allow us to have full control. However, we can ask for help and team up against this Monster. ALS is the biggest enemy anyone can face and it takes a lot of us to battle it. Monsters scare us and they keep coming back. But as in Oz land we all have something we are looking for and just need help to find our strength and way.

By the way I love the Wizard of OZ and have seen many versions. I love to travel, meet people and share wonderful stories. The coffee will be waiting and I am pretty sure there are Starbucks in Dallas and Pittsburgh. I also have some big girl panties and a queenism for you and a couple for this wonderful group of queens. It has been a few days and I miss the fun. if my post gets moved it was worth it to give you a crown.
 

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Dear Nancy, I hope you are feeling surrounded by people who truly care, because you are. If you are having trouble finding contact information or getting help with certain things, please feel free to message me. I am the queen of research and finding answers. Some challenges will be more difficult than others to resolve but I persist regardless and if I can help in any way, I gladly will.

Christine
 
Hi, Nancy, not to hijack your thread but first I have to tell Star, who has uncloaked as Christine, welcome to the next phase of her journey, and appropriately a "new" name.

Nancy, don't get a hydraulic lift. Those kind, you have to supply all the strength for lifting yourself, with a crank. You need a motor to do that for you -- the power lift. Those are a thousand and change new but well worth it, but you should be able to get an ALSA loaner as we did. We didn't have a van so walked to retail and transit...but don't know the options where you live?

If you can share with us the extent of any personal or family resources available to "rent help," and the public/private insurance plan(s) that are reimbursing your husband's care, that would help us suggest your next steps. Also, how old is he?

Honestly, you stopped back in for a reason, no? So please tell us enough for you to receive the benefit of what we have to offer, or we'll feel so useless!

BTW, my husband was diagnosed at Penn, in Philly. Long ago and far away--

Hang in,
Laurie
 
Ha Ha Laurie! Would you believe I never realized I wasn't signing my first name all this time?
 
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