Hold on Tight...

Today I went to the estate attorney and conferenced Brian in and we talked about all those things I have put off for literally two years. Crazy, huh? The drive over was beautiful, through all these parkways. Then at the meeting I sat and looked out a window too, so perfect view. I took it as a sign that I would be okay. So, of course will Brian in the largest sense of that word.

Yesterday I was meeting with a coworker after hours and we had wine and she started really asking about Brian and I started reciting facts. She teared up, I felt next to nothing. It was odd but as I explained to her I need to be like that most of the time. I could’nt function otherwise.

I also said that at some point, some time in life you get your thing - that loss that seems insurmountable and is just crazy painful. Most people will have that eventually. This is my turn. Brian is down but not overly so, better than last week. His core strength is beginning to fail him, and that seems somehow more ominous than limbs, hands, feet.

I think I decided I hate this house. For a variety of reasons I will live in it for a couple more years, but it is always going to be the house Brian got sick in. I wonder if I can ever look at my living room again and not see a Hoyer and a hospital bed, not see the night he showed me he could not raise his toes.I may feel different in time.

My mom had surgery today, spinal fusion at 82. Not sure I approve but it was not my call. She seems to be okay thus far.

Wow well done Lenore - not effing easy stuff!
Now it's done, it's not another of the things that need to be done, that's a bit positive.

You will know when it is the right time to move, that's for later.

What really worked for me was that I changed the order of things in nearly every room in the house. I moved paintings and wall hangings around to different places and rooms. When I put furniture back, I changed completely how things went into the rooms.

That made a huge difference because at first it was like trying to put things back to how they had been pre-ALS. Now it's mine and set up to suit me.

Glad your mum's surgery is over - there another thing you are not waiting on happening, for what it's worth xxx

Hi Lenore,

I don’t say much on here, but I have been following your thread for a while. So much of your last post here really resonated with me today. I have to say thank you for some of the very open discussions in the last couple of weeks. My PALS has made some similar decisions to yours wrt intervention, I think, and some of your questions and comments, and the resulting discussions have been very helpful to me.

I’m glad you enjoyed the drive thorough the parkway and the view from the office. When my PALS got to the point where he became very dependent on me for, well, everything, a friend asked me how I managed to get through my days, and not crumble in a heap. I told her I tried to appreciate and be grateful for the little things. Even as it came out of my mouth I felt like it sounded so cliche. True though. It’s not always easy but it’s just so important, and makes such a difference.

I find myself sometimes having to explain things about my PALS to people and I marvel at how matter of fact and detached I can sound about the whole situation. I often wonder if I come across as uncaring. I still curl up in bed with my dogs and just cry sometimes after I put him to bed, but I just wouldn’t be able to get through every insanely busy day if I were weeping all the time.

Well done on getting to the attorney and getting things sorted. You are gong to be okay. Its nice to actually feel that way every once in a while.

I’m know what you mean about the house. I look around ours and see the padded grips I put on the bannister when Neil was still negotiating the stairs, all the scuff marks on the walls and doors from the walkers and then the wheelchairs, all the bars and rails and little fixes I put up at various stages to temporarily solve various problems for him and I wonder if I will ever fix them, or even if I do if I will ever be able to really see those parts of the house without all the adaptations, equipment and scars.

I admire your strength and resilience. Hang in there and take care.

Tara

Lenore,

I am so happy you were able to get some legal stuff sorted. That takes one small pressure off of you. And I’m happy the drive there was beautiful.

I’m glad you got to lay it all out for a friend. And you are not along in talking about it like you did. I do the same, and maybe that keeps others from seeing the help required to get through this. However, I do believe like you, that if we don’t box it up so we can deal, we won’t deal at all.

Add on top issues with parents, it just really is too much, but we press on.

And I totally get the house thing. I have stated several times I don’t think I can stay here after. There is part truth to it being too big, but the other side of it and probably bigger is just it has too many bad memories. And even worse is it has an awesome floor plan, I love this one better than our other two homes. But I don’t think I can stay here. With all of Brian’s stuff having been in the Master, I don’t think I could sleep there. So I completely understand.

It’s true as well about everyone having their own “thing”. Many people are surprised at me when I won’t compare disease, like mine is worse than yours. No yours that you are dealing with is just as hard for you as mine is for me, just different.

Hopefully Mom will heal quickly without too many complications.

Hugs,

Sue

Thanks Tara, Sue, and Tillie.

Today I sat and calculated how long it will take me to get xactly where I want to be to buy on my own, and I think it’s about 24 months to get to that perfect down payment and credit score. It goes without saying that in all reasonable likelihood Brian will be gone by then, and that too will happen in this house. My mind has turned to practical things in a cool way. Maybe because we are ever closer.

I was single so long. The life of being a wife is so different from being single, in some ways restricting yes but in many other ways easier. My husband for example did that perfect combination of things to have a crazy high credit score. Mine was alright, his was/is close to 900. Basically, any item you ever want to finance be it a home or car or whatever is interest free or very near it at that level. So, losing that advantage. It’ll be okay and I can more than manage on my own I do have a good job. Just makes you think.

He could also do any and everything at home, we never called for help. He took delivery of our water heater to the curb, put it on a dolly and installed it himself in the basement. Now I need help and have to do things myself. I generally do not waste time complaining on these things, you just get it done. Yet now with attorneys and having to sell his truck so I don’t have to mess with getting the title in my name to sell it later, open a third bank account, finish the advance care directive, it all comes home and is real.

It’s okay, just gotta get through this. Well it will never be okay, it just is. I tear up randomly too. Did it this morning making breakfast. I like hiding in the kitchen, it’s a place to feel a bit without showing it. Brian does not need my tears. A friend said she and her PALS use to cry together. That’s not how we roll, in fact it sounds awful but whatever works.

I am gonna go see my mom today and appreciate another Parkway drive. Minneapolis is a frozen tundra so many months a year, but at this time it looks like a green carpeted paradise.

Lenore,

My Brian was Mr DIY as well. We remodeled our first home, and he always did all of the home maintence, water heaters you name it. I now rely on son and BIL. But it’s different, totally. I get so much of what you are saying.

Huge Hugs,

Sue

Yeah don't even start on DIY masters .....

Lenore, do all you can now, it's a really smart strategy because you are in full on get it sorted mode and you will really be glad later for any of the things you get in place and sorted now.

That’s my goal Tillie. When Brian leaves this world, I want to have as few practical matters to think of as possible. My friend’s husband dies of Liver cancer not long ago. They had no estate plan and she is still trying to dig out. Of course, her situation had so many complications it was like a movie but still a lesson in why you plan.

Leonore, just want to say thank you for taking us on your ride along the parkway and also along the dark stretches.

Hi Lenore. Sorry, I have not kept up with your threads; I was once subscribed to one of your threads ("A place to speak my truths"), but that one obviously ended. I don't have too much time to scroll thru everytihng...... At any rate, I hope to be here for you now and then and comment when I think I have something helpful to say.

Regarding ALS as commonly known as "Lou Gehrig's Disease" in the U.S., yeah - it kinda bugs me a bit too. I think it just stuck ...... and sometimes labels/monikers are hard to get rid of. I think at the time (& for many years thereafter) it was a good thing, considering it helped to raise public awareness of the disease. Lou was nicknamed the "Ironhorse" ......... set the record for many/many years of never missing a game. So, hence ...... if HE could get this terrible disease - considering what a super-human athelete he was...... you get the picture. The label stuck I guess, but IMO, it is less commonly thought of as Lou Gherig's disease today. Just my opinion.

A side note to this is that I read that Lou Gherig's Summer house was in ......... TaDa!!! - Lyme's Connecticut. Call me a conspiracy therorist, but why is an increase in ALS associated only with outdoor sports (soccer, football, etc. , but never with basketball, swimming, gymnastics ........ So, an increased prevalence of ALS is not associated purely with athletes/hyper-conditioning, but with exposure to turf!? In our experience, we live IN the woods, in Central, PA, which now leads the nation in tick-borne diseases. I was treated last year to a classic Lyme's infected tick-bite (which does NOT mean I had "Lyme's Disease"; I was lucky - I developed a rash and was treated promply and for 30 days). I've picked 3 of the little septic-pool suckers off myself in the past month. It makes me wonder how many I've had that I never noticed. My husband had several tick exposure's/bites/removals over many years. Approx. 6 months after being bitten by a tick, having a Lyme's rash and a very high fever of 104F!!, and having treatment for Lyme's Disease, he developed ALS. My neighbor (who lives 150 yards away) was diagnosed and treated for Babiosa (a severe, tick-borne illness), also after having a severely high fever and joint pain. Our 6 y.o. otherwise healthy Sheltie died of Lyme's nephritis (destroyed his kidneys). So, am I suggesting Lyme's/tick bites are a causative factor in ALS ......? Who knows. It's just one of the many inigmas of this BEASTLY disease of ALS, ........ I think a genetic predisposition/weakness for it, in combination to unknown triggers may set it off.

So, sorry - I digress - but any suggestion in the Lyme's forum on this forum will be soundly smacked down! Let's see if the forum monitors clip this comment...... At any rate, Lenore, I will try to follow your current thread more closely and I am sending you thoughts of strength, comfort and love.

Thank you for your thoughts Buckhorn. The debates on causation/s continue. I simply pray that the first survivors of ALS have been born.

My husband asked me to put his glasses on this morning and he cried, so very unlike him- only the second time in two years I have seen his tears. No words.

Oh, God Lenore ....... I am so very sorry.

Thanks Buckhorn. It’s such a rollercoaster this beast. Came home from work tonight, Brian was on the phone with a friend yelling about ia political endorsement. That did my heart a world of good

That is a good up to the last down. After a couple of meltdowns on my side last Saturday (I basically stopped short of throwing my late lunch while I bawled at him that I miss talking with him about random fun stuff) my PALS told me he always liked to put cheese in between the layers of his lasagna.

Lenore I’m so sorry. Those times are so terribly rough.

Hugs,

Sue