This is simply exhausting.....

[ruthiep]

Nothing special....just a vent! I realized this past weekend how much I missed "slow dancing" with my PALS while listening to the Bose in the kitchen and cooking Sunday dinner for our daughters and grandsons. It was a moment between us and it stunk! Heading to the ALS clinic early tomorrow a.m. 4 1/2 hours away even though Scott doesn't want to go---he humors me at times!

The sad fact is that my hubby's progression is stepping up and we both see his retirement from work and a full time wheelchair in the very near future. This damn beast of a disease sucks (x 10).

To each of us walking this path....I pray for your strength, dignity and fortitude through this difficult journey. Hugs and luv to all

Ruth

 

[Ms. Pie]

I miss those carefree times too. This truly stinks.

 

[cervus]

I do too. Just after Bob was diagnosed we started having Happy Hour at home - we'd put music on, slow dance, have a drink and cheeses. Slowly he started leaning on me and the dances shortened from maybe two songs to one, then a couple of minutes and then it was gone. I miss that too. Sorry Ruth and Marta and everybody else this is happening to or has happened to. Yasmin

 

[Ms. Pie]

Love you Yasmin!

 

[cervus]

Love you too, Marta.

 

[Annie's Phil]

Many, many, many fond and affectionate memories here as well. Now I even look back on my caregiving duties longingly. In time memories of the exhaustion will be forgotten and only memories of the affection will remain. My heart aches for you all.

 

[WellsRuby]

I was thinking the same thing this weekend. I was watching JIm struggle so hard getting dress and the effort it took. I just turned in my resignation at work so that I can be at home for him.

 

[cervus]

My thoughts are with you too, Phil and Ruby.

 

[Barbie]

Pals and cals hurting so much...missing so much. My husband never wanted to dance but he use love to grab me when ever I was getting dressed--it use to annoy me so much and I use to yell at him about it. Now I would give anything (and so would he) to have that back. I have actually been having dreams where he is kissing me--another thing i miss so so much.

my heart is hurting for all of us

 

[patgayle]

Missing some of the mundane parts of life, is so hard, I just wish I could lie beside my husband again, the hospital bed is not big enough even if he could lie on his side. The closest is when I lie on his bed and he sits beside me in his wheelchair. I can only hope that time will take away the frustration, anger and exhaustion. ALS is definitely not only the disease of my husband, it is mine too as his primary caregiver.

 

[cervus]

Patgayle - I bought a single bed for myself later through Bob's progression. I put it right next to his bed although most of the time we had the BIPap set up between us. But towards the end (and I wish I'd done this sooner), with Bob's rail down on my side and his bed lowered to the same level as mine, it was like a double bed. And so nice. Otherwise I'd cuddle with him but not for long cause it was too uncomfortable. If you're able, try adding a single bed. Take care. Yasmin.

 

[vickim]

I haven't progress as far as your PALS but I can relate to the loss of simple things. Yes Barbie my husband and I have never danced but instead of grabbing, my husband used to goose me when I was bent over looking in the fridge or the dishwasher, always when I was distracted, now he is afraid I 'll fall.

I miss the spontaneous passion, now passion has to be planned. I guess planned is better than none. I wish you all peace. Hugs.

 

[joni51]

I feel everything you all are saying..

 

[cubcake]

Me, too. Just as Yasmin did, I dragged the trundle bed from my daughter's daybed out to the livingroom next to the hospital bed, bought a really nice mattress for it, and I happily sleep on the crack. It looks like a homeless encampment in there. I promised him that we would "be like glue" when we got married, and I meant it. But I'd give just about anything to hear the sweet, sweet sound of his voice. Just one more "I love you."

 

[skipper66]

Reading these posts have made me cry. Sending all of you a hug. You are all in my prayers. Kim