Now What?

[Staying strong]

It hasn't even been 2 weeks yet. Still expect to See Liz when I wake up. The Kids are doing Ok considering the situation. I have the spare room packed full of all the Medical equipment that had been in the Living room. And the Hospital Bed is still in our Bedroom. I need to get these things back to the Company's and the ALS loaner closet. But it's hard to think about. Being back at work helps a little. I just wish I could be as strong as Liz was during our ALS journey. I miss her so Much

 

[affected]

hugs

Have you been seeing a counsellor while Liz was with you?

I found it helped a lot and so did writing. xxx

 

[Atsugi]

One foot in front of the other, man. That's all there is at this point. Working is good. But two things happened to me just after Krissy passed, that I wish I had done differently. First, I threw out a dumpster worth of her stuff. Of course most of that has to go eventually, but I should have waited six months when I could think more clearly. Second, I quit my job in dramatic fashion. Now I think I should have discussed it with HR and taken some time to review my options.

At this point, I thought I was thinking clearly, but I was not. Try to avoid that happening to you. All the best. Hug your children, 24/7.

 

[Emrs]

My dad said it took two months before he could look over at where my mother’s hospital bed was, and not expect to see her. About two weeks after my mother died, my father started talking about “ending it”, so I immediately made an appointment with his PCP. In addition to changing his antidepressant, the PCP gave us a flyer for a 12 week “Grief Recovery Program”. Honestly, it has helped. I have actually done the readings and homework, which helped propel me along the grieving process. My father hasn’t really done the readings/homework. For him, it is more about getting out of the house. After our family’s 3 year journey with ALS, he doesn’t have any friends or any social life to speak of.

As for the DME, it was a relief when we finally did get it out of the house. It was just so sad seeing an empty wheelchair, or the empty hospital bed. As much as I found DME companies to be difficult to deal with when my mother was living, they were very helpful and kind when they were picking up equipment. What would have been a 4 hour window for delivery became a 1 hour window for pick up.

 

[Barbie]

It helped me a lot to get all the equipment out of the house. I put it all in the garage and gave it away or had it picked up quickly. the chair was the last to go--I sold it. It upset me the most to look at.

 

[poppies]

The recliner was a huge relief to get rid of. Every time I walked down the passage and saw that chair through the doorway I expected to see my Iven there. It was like there was this huge big gaping hole where he was supposed to be. I sold the chair, rearranged the room and bought a couple of give the room a new feel. It still feels like his room, but in a peaceful, loving way now.

 

[affected]

I agree about getting things out quickly.

Chris died around 2am. I phoned MND NSW that same day and they said we can pick everything up tomorrow if you like. I said oh yes please! So next morning 2 male friends arrived and we just packed up all the stuff and had it out on the verandah when the truck arrived.

By the time the truck arrived they had helped me move pretty much all the furniture back into the lounge room as most of the room had been stripped and everything piled high in a spare room that you could barely walk into.

It did really help because looking at 'empty' equipment is really quite distressing!

It is right that you miss Liz so much, it hurts, but it's a fact, we miss our PALS immensely xxx

 

[Staying strong]

Thank you All.. I have just about everything packed and ready to be picked up. Liz's head caregiver ( we had a great team of 3 ladies) was over this weekend and gathered her things.. She offered to help with everything. My daughter (16) wants Moms recliner to stay for now with the wicker basket of towels on the side table and Bell. I'll wait till the time seems right to remove that from the living room. Thanks again everyone.

 

[Loverly]

It has to get better, but some days will just be worse. No way to predict it unfortunately.


Sending you loving thoughts.
jen

 

[Danny2124]

I know how you feel I'm six weeks into this new life. I dearly miss the love of my life. Take one step at a time, do not hurry the process. the process is Yours. I gave all the equipment to a local ministry within the first two weeks, because I want to get the decease out of my house. Now I reflect on the life and love of my dear wife for who she was not the decease. Going back to work will help. Continue to look for support wherever you can find it, you will need it. Do not walk alone.

 

[gooseberry]

I was able to donate all of Steve's equipment or turn it in within 3 weeks. For me it was crucial, for others it is sad. My new normal doesnt feel so normal but it is mine. Take the opportunity to find new things you enjoy. Gardening, painting, bike club...whatever interests you.

 

[Atsugi]

All I kept were Krissy's stuffed animal "Tigger" and her traditional black leather doctor's bag. They're next to the triangular case with the American flag in it, and the nice little wooden box with her ashes.

Took years, but I think I've pretty much gotten rid of all her stuff. Donated it, mostly. Of course, I have tons of photos. The hardest things to get rid of were two souvenir nightshirts; one from Prague University where we visited, and the other I bought her at the concession stand at a drive-in movie in Germany. I dared her to put it on in the bathroom and walk back to the car wearing it.

Most men have fantasies. I have memories.

 

[affected]

I dared her to put it on in the bathroom and walk back to the car wearing it.

Most men have fantasies. I have memories.

Mike does that mean she took you up on the dare???

 

[Atsugi]

She was really conservative, too. But love will make you do things.

But before we dated, she was extra conservative. On weekends, 50-100 of us GI boys and girls would get on a bus or two and head for the Alps to ski. As soon as we drove out the base main gate, the coolers would pop open and everybody started dancing in the aisles as we zoomed down the Autobahn. Then one bus passed ours, and the partiers on that bus mooned us! About 20 moons shone through the windows of that bus. So, a few minutes later, as our bus passed theirs, all our women got up against the windows and flashed them.

All except Krissy. She kept her shirt on. I didn't know her then, but I resolved to convert her, to bring her over to the Dark Side. So I sat next to her and struck up a conversation about the relative merits of white versus red wine (with practicum, of course.)

 

[Loverly]

She was really conservative, too. But love will make you do things.

But before we dated, she was extra conservative. On weekends, 50-100 of us GI boys and girls would get on a bus or two and head for the Alps to ski. As soon as we drove out the base main gate, the coolers would pop open and everybody started dancing in the aisles as we zoomed down the Autobahn. Then one bus passed ours, and the partiers on that bus mooned us! About 20 moons shone through the windows of that bus. So, a few minutes later, as our bus passed theirs, all our women got up against the windows and flashed them.

All except Krissy. She kept her shirt on. I didn't know her then, but I resolved to convert her, to bring her over to the Dark Side. So I sat next to her and struck up a conversation about the relative merits of white versus red wine (with practicum, of course.)

What a great story!
My dad is taking the same view as you are. They had 18 blissful years. It's hurting him so much, but he's holding onto the memories.

Jen