This and that

[pdcraig]

Hi everyone, no real point other than needing to clear my head. I haven't posted very often but you've all been so supportive, thank you for that. Helped me through some dark days.

I finally had to move my partner to a long term care facility about 6 months ago. I just couldn't keep him safely at home anymore. I have to work, his family is useless and mine is too far away.

He's doing really well, we've had our good times and not so good. Having a hard time being at home with out him this week. Not really sure why. It's been a good week for us. no issues during visits, we've had a few laughs. All in all, a great week.

So why am I so down today? I miss him being here with me so badly tonight. I've been kind of teary all evening since I got home from our visit this afternoon. I was discussing his meds with the duty nurse and had to stop mid sentence, I choked right up. For what ever reason, that feeling has stuck with me. i found myself looking fondly at the marks his transfer poles have left all over the house. I guess I just feel really lost tonight.

Tomorrow will be a better day. Thanks for letting me ramble on.

 

[Atsugi]

Ramble anytime. I know exactly how you feel, I think.

 

[4tloml]

Teared up just reading how you're feeling. ALS just causes so much grief, so much loss and longing...and for so long. Loss and longing, even when our dear ones are still here fighting. Glad you posted and know there are so many here that understand. For me it kind of ebbs and flows. Some days are better than others...in fact, some are really very precious. Wishing you those kinds of days again. Please check back with us and let us know how you're doing.

 

[Atsugi]

I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why.

That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works.

Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that.

But life with ALS is more like an emotional roller coaster with obstacles thrown in our way. And there is some utility in knowing roughly how long the ride will last, and we can prepare for the manner in which it's going to end.

My PALS and I were never involved in a war against ALS or a battle for life. Instead, we realized we were on an unlucky roller coaster that we hadn't signed up for. This new, unfortunate ride led to a quicker but fairly predictable end of life, and required some modifications for eating, drinking, communicating, and perambulating.

So we approached our new life matter-of-factly. We knew that the ride would end soon, and we planned for that, to make the experience as palatable as possible.

The thing that made all the difference was our attitude. We didn't fight against ALS, really--you can't win this fight. Instead, we adjusted to the roller coaster as needed, and, as before ALS, we continued to enjoy each day as it came.

Although there were some sad or scary moments along our ALS journey, we were pretty much in control of our day-to-day living, and that sure did feel better than being sad and scared all the time.

Life with ALS is still somewhat like any other life, except you know what the end looks like and you have a rough idea how long it will last. What you do with that knowledge can make a big difference in the quality of your days remaining. --Mike

 

[Gembead]

I say go with your emotions, I know most of the time I am generally handling this whole deal really well ad the suddenly my eyes start leaking for no reason in particular and I feel my throat tightening and then I feel like I could just sit there and have a big howl. It's ok to do that and release all the built up emotions we hold onto while trying to live daily with all the changes we have to make as a couple and slowly watch our PAL deteriorate. I seem to get most emotional when BJ is a sleep and I have trouble falling asleep and then my mind wanders to life without him which makes me so very sad.
Sending you a big hug
Luv Gem

 

[Nuts]

Those feelings do sneak up on us when we think we are under control. Being alone, as much as I relish it, is a dangerous time for me, too.

My heart is with you. My eyes are wet.
Becky

 

[Green Queen]

I really feel for you. The crash landing after the euphoria of a great week has hurt you greatly.
Thank you for letting us help you deal.
Feeling lost is not so bad when you know someone will find you.
Very glad we found you.
May the great week you've had put a smile on your dial once more.
God bless, Janelle x

 

[lgelb]

As a P/CALS, the hardest thing to control, even harder than what your body or situation allows you to do, is how you feel in a given moment. We didn't find ourselves being "matter of fact" like Mike & Krissy, but we weren't fighting a war, either. I'm not sure I've got a valid metaphor. Joni Mitchell's song "Circle Game" probably comes closest.

Anyway, the very nature of feelings is why there's so much value in accepting yours even though you didn't choose them (sorry, I don't subscribe to the "fake it till you make it" school). Joy and sadness can be seconds apart. If you send either packing, you miss the other, too.

I agree, PD, that all you can do is recognize it, unwrap it if there's something to be learned, let yourself turn the page in your own way. And may I say that your partner is fortunate to have found you.

Best,
Laurie

 

[pdcraig]

Thank you all for your kind words. I held off replying because even here, I wanted to be able to put the best face on things. I wanted to be able say that tomorrow was a better day and things were good. Truth is, this has just been a tough week. Funny how hard that can be to admit.

Mike, we never saw it as a war either. we weren't fighting anything just trying to take the days as they came.

4tloml, I can't tell if this is an ebb or flow. I'm normally pretty good with what's happening but it feels harder to cope this last little while.

Gem, I've been leaking all week. Can't seem to shake it.

Becky, i agree, the times when I'm alone are the hardest.

Janelle, your comment put a smile on my dial

Laurie, I don't put much stock in faking it till you make it either. What's bothering me is what's on that page. Having a harder time than usual processing it.

This is the first time in 17 years that we'll be apart for the holidays. Not because we are visiting our respective families, no our Christmas on Boxing day. He won't be here critiquing the gingerbread houses or frantically rolling spring rolls on Christmas eve. I just miss him here with me. I thought I was a little further along accepting he wouldn't be coming home.

Thank you again for the support, one day soon will be a better day.
Paul

 

[affected]

We grieve all the way through this rotten process. We deal with one part of progression then another hits and we grieve again. Holiday periods bring it all up high again.

You sure don't have to put a good face on here or be strong - it's good that you are admitting how you are feeling and that allows us to give support xxx

 

[Green Queen]

You know paul, you don't have to accept that Ferd isn't coming home. You are allowed to be sad about that...forever, if need be.
I'm home with my husband and kids, so really don't understand your grief with your soulmate not being there, but the reality is, I don't need to understand it. I just need you to know I'm holding your hand and sending you hugs when that grief becomes overwhelming.
One thing I am hoping for you paul, is that one day, happy memories of being in the house together will outweigh the sadness of living there alone.
Do you have a cat, or dog? They understand everything!
God bless, Janelle x

 

[pdcraig]

Just wanted say things have gotten better.

Tillie, I've been reading about anticipatory grief and it has helped put things in a bit of perspective. You're right. we grieve over and over again at every stage of progression.

Janelle, I don't think I will ever think of this house without a tinge of sadness. As far as accepting he won't be coming home, there is still a toilet at the end of the dining room. It was the only place that had enough room to get his wheel chair beside it. I just can't bring myself to have it removed. It was one thing to return the equipment the ALS society had loaned us but quite another to alter the house so he couldn't be here. Drives my mother crazy. One day...

No dog or cat. I grew up on a farm so no animals in the house, they belong in the barn LOL.

Take care
Paul

 

[affected]

I'm so glad you have started to move upwards again Paul.
That grief ebbs and flows, but thankfully it does ebb and we keep moving forwards at those times.