Need some advice and a bit of a ramble

[lgelb]

Paul, props for trying everything and anything. I am sure Ferd at root appreciated that you spent the night. These things can mean more than you know, however restless he was/is.

Thinking of you walking the path -- no one wants to reach the finish line, but you will be prepared logistically, sounds like, which is all you can be.

Best,
Laurie

 

[affected]

I can feel your exhaustion, mind, body and soul.

Your marathon runner analogy really does nail it. I'm so glad you tried to give Ferd the night together, no matter the outcome it was the intention and thought that matters in this one.

I hope this leave is able to start on the 19th, one less full time thing on your plate is going to have to be a good thing!

 

[wishmobbing]

Oh boy, Paul, you're such a trooper! Taking leave from work sounds like the best thing that can happen right now. I see sleep on the horizon.
Strength to you!

 

[Narrowminded]

Paul, continuing to send those hugs. I’m still holding you up and tight.

I’m thankful you could at least stay with Ferd even if it didn’t turn out exactly as you would have liked it too. I’m thankful too that you can get sick leave. Not only should stress cover it, but it should be PTSD, ongoing and will definitely be after you cross the finish line. Getting that break is exactly what you need. So much to shoulder right now.

Praying the will can be found and sorted. Maybe they have an idea of what attorney drew it up? Praying to for peace and strength as you move through these next days and weeks.

If you ever come down to the states, let me know, maybe we can get together and I can give you a long overdue hug.

Sue

 

[Herdaughter]

Dear Paul,
I am so glad you get to take leave without a total whack financially. That is huge!

I have frequently thought a fund should be set up to help patients with caregiving costs. The ALS Association has been awesome with equipment (walker, wheelchair, etc) but it’s still incredibly expensive to have this disease. Add one more insult to injury. The last thing our PALS and families should have to worry about is having the financial wherewithal to appropriately care for them.

So here comes another big fat hug from Oregon. You can cry on this shoulder as long as you want.

Holding lots of light, love and peace for you and Ferd.

 

[Nuts]

Paul, I am so relieved that you can take the medical leave. DO it. What a prince you are, trying to arrange that night alone. I'm sure that you being there meant the world to Ferd.

This has been such a difficult ride for both of you. I wish you rest and peace and a break from the new boss. I'm sure she's trying to be supportive, but someone who has not been to the edge that you are standing on can understand the impossibility of bringing yet another new person into your circle. The energy involved in making them understand once you start sharing is just not there.

I wish that I could bottle some rest and calm and send it to you. The mental energy is headed your way.

Much love, oh Prince of Loving Ferd.

Becky

 

[Herdaughter]

Paul, I am thinking about you and Ferd right now, so I thought I’d send you a little note of support and love. WE are here for you.

 

[wishmobbing]

Dito Herdaughter! Good energy coming your way.

 

[Narrowminded]

Paul I haven’t checked in for a bit, but want you to know I’m still hugging you and holding you tight across the miles. I hope all is as well as possible. Sending strength and peace your way.

Hugs,

Sue

 

[affected]

Same here Paul you and Ferd are constantly on my mind xxx

 

[pdcraig]

Still here. The continued support you have all been sending our way is much appreciated.

Ferd is hanging in there, I have no idea how. It's been just over a week since he ate anything. He still drinks occasionally but the gag reflex has been really persistent. It's happening almost any time he opens his mouth. He's also been having really bad spasms in his jaw and throat muscles. Trying to do oral care is a challenge and he is still insisting I brush his teeth.

Stayed overnight again on Saturday with no better result on the sleep front. I can't believe he wants me to do it again. I am miserable with no sleep. I felt so bad when I left on Sunday morning because by 5 am I was getting pretty short with him.

Last weekend my mother, aunt and cousin were down to visit him. It was great to have everyone here. They're so easy. Take care of themselves. Perfectly fine with whatever time Ferd can spend with them. Completely fine being at my house without me. No pressure at all to entertain or visit. It was a welcome relief.

Can't seem to catch a break with anything else though.

My regular doctor was away so I saw the one covering her absence. She won't be back until the 4th of April. The agency that approves my leave called to tell me that stress is not a diagnosis, it's a symptom, any doctor should know that. My claim has been put on hold until the 4th when I see my regular doctor. If she can't produce better documentation my leave will be denied. Apparently I need to be properly medicated and there needs to be a definite timeline of when I can go back to work. I tried to explain the situation, what ALS was, on call 24/7, need to be able to answer the phone and drive so no heavy medication, dying, don't know when, can't establish an absolute timeline and she made me feel like I was making excuses and just looking for a reason not to go to work. No formal counseling, an online forum, really. I was so mad and panicked when I got off the phone. I've been away since the 19th. By the 4th of April, I will have used up almost 1/2 of my vacation time if I don't get approved. I sent her an email asking for some clarification of just what she wanted from my doctor and it was redirected to someone else. Haven't heard anything back. At this point, it looks like my leave will be denied. I have no idea what to do next so hopefully my doctor knows what they're looking for.

Went to the cemetery to make the burial arrangements. There is no next of kin listed on the parent's plot. The father's name is not on the headstone, he died in 2012 and there isn't enough room for Ferd's name, the stone will need to be replaced. I would need to have the family sign an affidavit assigning ownership of the plot, then permission to use the plot and replace the stone before Ferd could be buried. I ended up buying a niche in the mausoleum close by his parents.

His sister texted me she noticed Ferd wasn't using his bipap, she thought it was a cpap. Was I interested in selling it? Who thinks like that?

If someone who said I needed help actually helped me, I think I would faint from the shock. I'm so rattled these days. Everyone is telling me what I need without listening to what I actually need. It amazed me that woman on the phone honestly thought "proper pharmaceuticals" would make this all better. I'm so sick of people trivializing this or making me feel bad that I can't just take this in stride. Will I need more than a week bereavement leave? Yes, yes I will.

I do understand most people have no idea what the last few years have been like for me. I wouldn't wish this on anyone. Why is everyone so fixated on me putting this behind me and moving on? What am I going to do next? I have no idea. I'm still trying to wrap my head around the fact the person I thought I was going to spend the rest of my life with will not be here. The idea that I will wake up and not be consumed with what person I have to speak to today, what office I need to contact before I go to spend the night taking care of Ferd, i can't imagine it. I don't know what I want. It's been over 20 years since I thought only of myself.

I own these tears. The same way I own these laugh lines. I have earned the right to both.

Paul

Prince of Persistence

--oO:neutral:Oo--

 

[affected]

Holy sh*t batman.

You own those tears for sure, and every single thing you feel and think is completely valid.

I'm so gob-smacked. I can't even imagine how you bounce around from one thing to the next in all of this, but I get all those feelings.

I can only ramp up the love and strength I send out in the ether towards you Paul. CALS are a special breed created by the fires of ALS and no one else gets it even a tiny little bit.

 

[wishmobbing]

Paul, what an ******* that doctor is! If someone's not realizing you're not even asking for a break but for a chance to keep a modicum of sanity it's a discussion that's not helping. Hope your regular doctor will help with this.
Thank you for taking the time to update us. I'm sure I'm not the only one who's thinking about you and Ferd A LOT and wishing you anything from someone bringing out the trash up to heavenly intervention.
Good to read that some family are easy to have.

 

[Nuts]

Paul, I'm playing catchup and I am astonished at the jerks you are dealing with. I just looked back at Matt's first short term disability leave, which was approved because of stress his office put on him due to his ALS. While you are in a different role, here's the info on that -- it might help.

He was diagnosed with Adjustment Disorder, caused by long term stress, anxiety, and sleep impairment which negatively affected energy, attention, memory and emotion regulation. This was diagnosed by a clinical psychologist and his treatment plan did involve individual psychotherapy targeting stress and anxiety. He was also having nightmares and that was a secondary disorder. Buddy, you are living with all of that--you just might need to have the right provider offer the diagnoses, and you might have to agree to treatment in order to help handle the situation.

I haven't read back a long way to see if you mention which kind of doc requested the leave, but if it was your PCP you may need to see a therapist in order to get approval.

You own the tears, my Prince of Persistence and Pain.

Much love,
Becky

 

[Narrowminded]

Paul - close your eyes, now imagine being held, held tight. That’s me wrapping you up in a huge hug. Stay there as long as you like, let the tears flow. I’ve got them. Doesn’t matter how wet my clothes get, that’s not important. What’s important is holding you, allowing you to be you. Allowing you to de-stress even just a little. Knowing the person doing the holding understands completely and thoroughly.

It’s a damn shame, today’s world is so fast paced that grieving is supposed to fit nicely in a little 3-5 day block. After that we’re supposed to just move on and forget about it. No, no, no. No one should have to do that for any reason and those of us who have battled long and hard need time to recover.

Maybe your Dr.needs to title it PTSD, that’s what it is. While it is still on-going, it’s also post dx.

I’m so happy that your family at least is so understanding, while Ferd’s, at least his sister must walk around with her eyes closed. Some people are just “stuck on stupid”.

As Becky has stated, you may need to agree to treatment for PTSD or however they decide to label it. Now I didn’t say this, but just because they prescribe a med, doesn’t mean it actually made it into your body. You will have to purchase it though. That said, I can tell you that Celexa helped me while I needed it and the right dose doesn’t leave you feeling drugged. Others have had good luck with Zoloft and probably others as well. It really does help with the Anxiety

As to staying the night, I would guess that Ferd is scared. Having you there next to him brings him comfort. I know you don’t sleep well, but it’s comforting to him.

Please know you are never far from my thoughts and prayers.

Hugs,

Sue