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Grumpy'sWife

Distinguished member
Joined
Aug 18, 2014
Messages
153
Reason
Lost a loved one
Diagnosis
07/2014
Country
US
State
Ohio
City
Southern
Hi everyone. It has been awhile since I have been on but wanted to give you a quick update on my Grumpy. There have been so many changes since the first of December when I was here last. Grumpy (Randy) has only movement on 3 fingers of his right hand now. He is totally reliant on the Trilogy for his breathing. He has been strictly Peg tube fed for about 6 weeks or so. He has lost his neck muscle function as well so has a brace for his neck. After much consideration and communication between us, hospice was called in this week.

He is amazing and has managed too keep his sense of humor and his personality is still the same. I am truly blessed to be his wife.

I will try to check in as things change but I stayed away because well frankly I was angry. Not with anyone here but with this damn disease that takes so much and doesn't care and I didn't think I would be very good company for anyone. So I wrapped myself in my love and made him my only priority. It's been amazing to be with him, to be his rock when for so many years he was mine.

~Kaye
 
Stay strong. You are a great person.
 
Dear Kaye,
It seems like you and I were in the same place the last month or so. We had our first hospital adventure, and have been trying to get to a new normal. Somedays we think we have it figured out and then we get slammed with a tough day. Quite often, the next day is better.

Hang in there. I'm so glad you are getting to spend time with your husband and that his humor is still in place. I love that we still laugh!
 
Thank you so much for updating us, though I'm so sorry to hear how much has happened in so short a time. I can certainly relate, we found that there were daily losses and changes, it was far too much to keep up with.

I think you should feel free to rant here, you have every right to be angry.

But, I am so pleased to read of both your attitude to the anger and loss - to give him all your time and love! And even more relieved and pleased for you both that Grumpy is able to still shine through all the horror.

Please do keep us updated, but you have your priorities right that's for sure!
 
Kaye, glad your love and his spirit and courage is getting you through this. You and Grumpy are in my thoughts. Hugs. Donna
 
Kaye, From one caregiver to another my hart and prayers are with you and your husband.
 
Glad to see you post Kaye. I had been quite worried. Enjoy your love and laughter with Randy. I find that is a wonderful gift to both CALS and PALS.
 
Kaye,thinking of you and so happy to hear that Randy still has a sense of humor.I know it makes it much easier for us cals.
 
Kaye so sorry that things are moving so fast, you are in my prayers.

Janie
 
Kaye you are amazing--It is ok to be angry--you have a lot to be angry about. I am in awe that Grumpy is in such good spirits, that is a testament to both of you and your love for each other. So sorry that things are m oving fast for you. stay strong girl
 
Kaye, you don't know me because I'm relatively new. Hello! :)

I agree with what Tillie and others have said: Feel free to rant on the forum. Sometimes when I'm angry with ALS, my PALS, the doctors, the insurance companies, the traffic, or whatever, it does me good to hear that someone else is angry for the same reasons. It's validating, and it calms me down.

So by ranting if you need to, you might be helping someone else, not just yourself.
 
Kaye, your love for Grumpy flows through your post. I'm glad that you let us know what's going on, and it's wonderful that he has retained his sense of humor. What a gift to you. Much love--Becky
 
Thank you everyone for your love and understanding. It was a rough weekend as we sat down with our good friend and pastor who Randy wants to do his service when the time comes. Never, ever did I think we would be doing this. But in true Grumpy fashion he has planned it his way, right down to the classic rock he wants coming from the speakers....he said he doesn't want me to have to worry about a thing. Amazing isn't he?

As for the anger I feel, it is getting better. I had a long talk with my dad who has been my rock through my whole life. He reminded me that 20 years with this wonderful man is better than never having found him at all. And, as usual, dad is right. I have been blessed. He helped me raise my 5 kids, walked our daughters down the aisle, we have stared at the stars from every state in the US but two, we have held hands in the face of fire destroying our home, held our daughter as she laid to rest her own little babes and then rejoiced with her in the birth of our grandson, we have laughed, cried and loved our way to this point.....why should this be any different? We just need the love a little more now....

Hugs to you all
~Kaye
 
Kaye,

My prayers for you and Randy. I love how you love each other.
 
Kaye, thank you for sharing your beautiful thoughts! Donna
 
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