Not Feeling...

[Nuts]

It's been some time since I've been able to make much of a post. I think of things I'd like to share, but then I just can't. What's that about?

What is this part of the rollercoaster that leaves me not feeling. I think. I respond. I plan. But I don't seem to be able to feel.

This past weekend we were snowed in, and Matt decided that if he couldn't leave the house there was no point in getting out of bed. This after a night of not wearing the bipap because he wanted "a peaceful night's sleep". After a night without it, he then slept the next day away. And the next night. And then most of Sunday also. He slept through meals--not good for a diabetic. It was so clear to me that this would be his life if he didn't get back on the Trilogy, so I finally insisted he use it and that he get out of bed (I told him he needed a shower).

I didn't feel upset. I just thought, Oh, so this is how it happens for some. So this is how he could decide to make his exit--just stop using the Trilogy and go to sleep. Why didn't I get upset? Why didn't I cry?

I'm finally tearing up now, now that I've forced myself to share a bit.

THe HHA that provided Matt's physical therapist discharged him last month. The paperwork was messed up and they hadn't been paid, and I think they finally realized that they would have the therapist driving three hours round trip forever for one patient, since he is a maintenance patient, and that that was not cost effective. What pissed me off was that when I called the VA to change companies, I found they'd written on the discharge that he'd met his goals.

Met his goals? I lost it and told the poor social worker that he'd meet his goals only when he's dead and had managed to get there without suffering contracture and extreme pain.

The VA was great and got a local company in pretty quickly (the one I requested). Then, two days ago, a nurse from the other company called to see how he's been doing since they last saw him. I told her fine since we'd gotten another company in to care for him. Poor gal, it wasn't her fault, but I explained what had happened and told her the same thing--that he would never meet his PT goals until he's gone. That taking a "break" from PT will only and always make him worse. That ALS doesn't take breaks and he needs this care for the rest of his life.

Again I didn't cry. I did finally feel a little bit of anger, but I should have not been able to say those things without feeling pain.

I've found that I have to look backwards to feel loss, and I can't do that. I even avoid old photos, because they remind me of what we've lost.

Maybe I've just done too good a job of living in the present.

So, is this a good thing or a bad thing, and is avoiding posting here just another layer in the cocoon that I seem to be creating for myself?

I'm just really feeling kind of lost.

Becky

 

[Gembead]

It's a good thing to vent, it's a good thing to express what your feeling, I think your feeling numb and I think that's where I'm at as well. It's very hard watching the one we love slowly slipping away. Your in a limbo right now and ALS is dictating and controlling what and when you can do things. ALS sucks...
Sending you a big warm hug XxxxxGem

 

[4tloml]

Hugs to you both, Becky and Gem. Numb is a feeling, too. Sometimes our minds and hearts just need a little time away from all the pain, anxiety, stress. If it goes on for too long, or to the point you're not taking care of yourself or are feeling hopeless, might be a good time to touch bases with a therapist because it can lead to serious depression. But it might just be a little psyche vacation your heart knows you need. Please try to relax into it a little--cut yourself some slack, listen to your heart, and please stay in touch here. <3

 

[Jlynn]

Gem, Your so right about feeling like ALS is the dictator. I have found that if my brother has a good day then I have a good day. Now if he has a bad day I keep up a good front and then go have a good cry. Becky, getting it all out and venting here is best. I don't do it often but when I do I feel a bit better. I hope you got at least a bit of relief from it. You are in my thoughts.

 

[Aussiemndcarer]

Bucky, I so get what you are saying. Our emotions are turned upside down. One good thing, you can express yourself well here. Thank you for that. It helps me in some way to know that emotions are shared.
We were getting so much practical help in the beginning from a critical care team. They allocate free assistance for a maximum of 12 weeks, and you have to need more than one specialist allied health worker ( OT, physio, dietitian etc). Wow! We qualified. However this was set up for rehabilitation, for when you exit hospital. The trouble is, I don't think our medical system knows where or how to categorise ALS patients. It's distressing.
I also get your sleep scenario. Jim slept more than normal the other day. It threw our routine out and we've been getting to sleep at night close to midnight for so long now.....I'm so bloody tired.....when he kept sleeping through the day I felt relieved. Then I felt guilty that I felt like that!

 

[JimInVA]

Becky,

First, please know that our combined arms are around you; we love you. It IS hard. We want to provide well for our PALS. I've had to opportunity to get to know you at some minimal level. I absolutely believe that you care for Matt and his well-being as much as I care for Darcey's. And we have some influence on that care. But there are things that we can't... and shouldn't... be in control of. And those are the very items that hurt the most. As you know from our private conversations, Darcey has elected to quit her Rilozole. She complains about the cost... and I counter with the fact that we'll still pay the same max out of pocket that our excellent insurance requires. To that, she only smiles. She wants what she wants. And with so little control and options available to her, I can only allow her that little bit of choice.

As a loving caregiver, partner and soulmate... like you... I've given much of myself to seeking to maintain my PALS quality of life to be at a high enough threshold that tomorrow is looked forward to and continues to be worth living. Difficult as it may be, there comes a time when our PALS begins to seek an alternative to our efforts to extend the joy of that next day. It is the greatest challenge of this terrible affliction. I think that Darcey is trying to transition into her last year of life. But more importantly, I think she is trying to transition me into that last year. I don't want to fight her... but I find myself tripping over myself to counter her kind efforts. Mentally, I know better. But emotionally, I want to fight. It is tough... especially for someone like me who has always believed he was "The Champion". I don't want to be "The Champion" any more. I want my PALS to stick around even longer... and not give in to her desire for the "beginning of the end". Equally, though, I'm tired. I want this to be done. I want to be passed this. I want to take life off of hold and move forward again... even if moving forward is to climb into a corner and feel sorry for the events that have transpired.

ALS puts all of us... CALS and PALS alike... into a position of dilemma and conflict. I am grateful for a wife who cares for me even as much as I care for her. She doesn't want 5 more years of this... and at 63 (next week), neither do I. Yet I continue to work diligently to make each next day better... even as I wish it was all behind. How do we handle that conflict? How do we survive? How can we hope for a better tomorrow? Yet I know that day... at least for me... will come. Perhaps it is the "selfish me". I've NEVER given up on myself... so I know I will survive. Why doesn't that make it easier?

Becky - I'm sorry this has been so long and so much about me... when it is you who is most hurting. But I feel a connection with you... similar to what I feel with most of the exceptional folks who participate in here (CALS and PALS). And I can only hope that by describing how I can feel will somehow allow you to feel less alone. We don't have the wand that can wave this all away. But all of us... and there are so many of us here... make a collective that can move each of us beyond the abyss and back to a life worth continuing to appreciate. Or so I want (HAVE) to believe.

Big Hugs, my dear friend! And much love to the wonderful many of you who continue to participate here as part of a social family unlike any other could ever be...

My best to all!

Jim

 

[scaredwifetx]

Becky, you are so loved here and know we all have hugs here. I understand your not feeling. I wrote about those same feelings the other night. It seems I shut myself down for protection when it all gets a little to crazy for me. Then I post my feelings here and always feel so much better.

Steve was released from nursing and physical therapist care and they also stated that goals were met. Really???

Jim, you put it so very well... as you always do. I know I have to allow Steve to make the choices. Just the other night he told me that he hoped this was not a long battle for him. He is afraid of what it will do to me. He said, it would have been better... if he would have died from a quick death. I did my very best to have good reasons for objecting to those thoughts without sounding worn out.

Becky and everyone here, I send out hugs and prayers. I have come to respect and love you all. It breaks my heart to see so much pain and to see ALS being our dictator. I HATE ALS!!!!!!!!

 

[Narrowminded]

Becky i'm so glad you decided to post. I probably don't post enough either. One thing I've noticed with myself, since this has gone on for so long for us, is that it's become so "normal" that I don't feel the sadness/pain that maybe I should. I'm into complete advocation mode, been there for way to long. What you did with the PT was advocating/fighting for him to get the help he needs. That is where this leads when it goes on long enough, and some have to start with it at square one.

Don't beat yourself up for not feeling. I think it comes with the territory a lot. We have to box up certain things just to make it through the day or the hour, so we can make those phone calls and get things done. Not sure how far you would have gotten if you were blubbering on the phone. A show of strength and resolve is sometimes more effective.

What scares me is thinking about my FIL's passing. I'm at the point, that his death and what he went through the week preceeding it, feels like a walk in the park in comparison to what we deal with. That sounds cold, that sounds uncaring. The question is, am I now cold and uncaring or am I just so torn and tattered that a week seems like a huge blessing in comparison of years and years of watching the drip, drip, drip of changes eating away at our PALS lives and the family as a by product. Sometimes those drips are torrential downpours, some times a running faucet. We never know from day to day what exactly it will be.

You mentioned not crying at the thought of "so is he just going to go to sleep, not using his trilogy and that's how it will end?" I've had thoughts like that. They're a bit different for me, but the same. I have not cried either. I think part of it is because, while we don't want to lose them, we also don't want to see them suffer. We know it's going to hurt like heck, but that isn't the first thing that comes to mind, and it goes back to my box theory.

Mostly I want to say you are normal. You talked about building yourself a cocoon. It's funny because reading that made me think of the "what will you do after" discussion. Probably 9 out of 10 of us talked of going off somewhere - alone, to just be for a while. Sometimes I think we need a cocoon to protect us, our emotions, our psyches. Just like the the caterpillar builds a cocoon to become a beautiful butterfly. It's protection for it while it changes.

Aussie - you talked about the medical community not knowing what to do with ALS patients, I think its the same thing here. Brian's PT got cut off a long time ago, because he could not show improvement. We as the family do his range of motion. Maybe now that he's under Medicare, I can try to get it again. We've done it for years by ourselves. I'm happy to say, there are very few joints on Brian that don't work. And his hands are the only place he has some contractures. Those are his fault. He would not wear the braces or let us deal with them.

Gem - you're right about ALS being a dictator, and I think more so at times for the CALS, than the PALS. The fact some of us cannot leave our own homes unless someone else is present, is sign enough. We have to plan our time out and make sure if it's groceries or supplies we are getting, that we get enough because an assured time out of the house is not always a given.

ALS sure is a beast. However, we have all proven we are up for the battle. We don't feel like it most of the time, but we are back here day after day, so we are making it.

Hugs,

Sue

 

[affected]

Even though my Chris was rapid progression I could so identify Becky. There have been some very powerful threads here lately. Such a reminder that we are all real people dealing with the reality of the full impact of this disease.

It's not just a medical issue, it's a very personal thing and every part of our lives are affected.

Not feeling can be a sign of a deeper level of depression. It can also simply be a way you are trying to protect yourself a little.

Matt may be feeling that the beast has nearly had it's run with him, would it be worth you both really talking through where he is at and what he wants? I know it may force some real feelings to surface for you and for him as well, but we can get caught 'doing' instead of 'being'.

Love you girl

 

[maryhahnward]

Becky,

You are so awesome for sharing yourself in this way with us. I feel like how you are feeling is part of our grieving process while our PALS is still alive. Because of the disease, and how awful it is, and the length of time it takes to make it's way through their bodies, our grieving stages can be odd and protracted. 2015 I have come to now know as the year of anger. It seems in retrospect I spent a lot of time hanging out with anger. Most of the anger was internalized and I couldn't find much joy or happiness in any of the spaces inside my head and heart. Numbness is a part of our journey as caregivers, as are any other emotion that comes our way. I've noticed my filters are not as intact as they use to be.

Our current situation: Of late the alarms on the Astral are going off at various times of the night. Sometimes at 3:30 a.m. and then on and off till I want to jack hammer it. It's maddening. It's a long story as to why this happening. The short story is it was serviced and reset. The company changed the settings so the alarms can't totally be turned off. The respiratory therapist that comes to the home, a long fought for service from the VA, and she did her best to minimize it but it can't be gotten rid of it seems. And he has taken to turning really hard because he can't turn easily anymore. He body slams. This can go on a lot some nights and not so much others. I know I have to separate our beds, we have two twins together to make a king, but I don't want to yet. I'm not there yet even though it makes me so tired during the day.

Numbness has it's place, so does anger, sadness, and any other emotion that floats through our hearts.

As for the VA and PT - we had the same problem with it stopping because the VA hadn't paid the company. God love him the PT came anyway while I was unscrewing it. He didn't want him to lose any ground. For a variety of reasons we actually switched to Medicare. Medicare continues to work for the moment and he was able to keep the same PT. His PT has been seeing him for two 1/2 years and has figured out how to work with his so well we didn't want to lose him. If Medicare stops then I'll switch back to the VA.

Thank you for sharing Becky. You are amazing in how much you've been willing to share. Sending good thoughts and positive vibes.

Mary

 

[soonerwife]

So many of you have expressed so well what a lot of us are feeling.

At work, others don't understand how I can seem so ok... I feel like we kind of compartmentalize just to deal. Unfortunately that sometimes makes us seem cold and unfeeling?!

Lately I just kinda feel like a robot. Just moving forward in somewhat of a fog.

 

[Atsugi]

ALS is a terrible torturous prison. You do what you have to do to get through it.

For me, numb is OK. Being a robot was OK, too. While Krissy was sick, I never cried. I just had my mission as a CALS and I focused on the job of CALS.

Whenever we could, we touched, we rubbed noses, we even lay down together when it was possible and I think it was all a good thing for both of us.

But I never allowed myself to feel emotion. Honestly, I have never been good with emotions. It's my own personality flaw. I just knew I needed to be strong for everybody. The kids looked to me for leadership, so I taught them to help Krissy, and I showed my example--I didn't cry.

You all might say my way was unfeeling or callous. You are probably right. But it was the only way I knew. It got us all through that year, and my kids came out of it very mature and very compassionate toward others.

ALS holds a gun to our head. You have to do what you have to do. I don't think there is a wrong way to support your PALS. As long as you support your PALS, you're my hero.

 

[affected]

Mike it is so true - there is no right or wrong way if you are supporting your PALS and have your heart set on that.

I know at times that I possibly seemed cold or unfeeling, but we have to deal with the incredibly harsh realities of the disease. Most people can't deal with that, so instead they use a lot of emotional language as they make excuses - "Oh I just can't bear to see him/her like this, it breaks me up". We can't bear it either, it breaks us up, but we say - "here let me spend an hour massaging and doing some ROM" (or insert there any one of a thousand care activities we do).

thinking of you Becky xx

 

[Nuts]

Argh...I had drafted a response to each of you and was almost done when I got called away. Guess what is gone. LOL. I think we've all had this happen.

Thank you all. I know I haven't been here supporting you all as I should, and it humbles me that you are right here when I need you.

You are all spot on. It always helps to know that no matter how new a feeling might be to me, it's not strange or unusual.

I don't think Matt is checking out. I think he's bored, and that he needs more time on the Trilogy but dosen't realize it. He is currently working on getting a new van--a larger one--so that we can continue to travel. Our next trip will be to Jackson Hole, Wyoming, in May. I'll write about that in another thread so that I can get advise on things to see (I know several members visited the Grant Tetons last year).

I feel like I'm hunkering down for the long haul, but I need to not withdraw.I am actually spending more time with my neighbors, so that is a good sign. Well, except that more time being "normal" makes one crave for it. That's not good.

Again, thank you all. I would say that you can't possibly know how much you've helped me, but I know better.

Becky

 

[Lkaibel]

No "shoulds" here Becky, just understanding and love for wherever you are today on this long road. Spending more time with your neighbors is good. I felt so much better myself just socializing a little more again.