CALS Roll Call Continued

[Mary2]

It is 2:30 in the morning and I am cleaning the house. I sleep 3 to 4 hours at a time and am frequently exhausted.
Today is my last day for tasks before I fly up North to the Celebration of Life. We have planned the ceremony just this week as Pals wanted no part in the planning of this. I can't believe I am flying so soon. Once this is over I must take a break for 2 weeks and simply rest. I am craving to simply rest. I am thinking of all of you and your Pals. Thoughts of you all are never far from my mind.

 

[MJT]

Same here. I could not have done this without you, Kathy, and all of the other CALS honestly posting. Kathy, I am just so sad about what you are going through. Mary, I pray that you will get rest somehow. I feel like I've been hit all over with a bat. My exhaustion is mostly mental, not physical. I dream of a pristine hotel room with a huge bed.

 

[Tomswife]

I am always thinking of you all. My caring CALS community. Almost funny story. Almost. ALS humor is a bit off. A nurse practitioner just stopped in our hospital room. She gave me a big speech about the need for Tom to go to a nursing home when he is dismissed. She gave me the contact info. I called the intake person at this nursing home.....no Bipap more than overnight.
Ha ha?

 

[MJT]

Good gracious. I'd track down the NP and tell her that her nursing home would be fatal! With ALS, there are zero absolutes, in my opinion. It would be very nice if there were! Then we could all follow a set path instead of navigating the jungle without a machete or snake boots. Hang in there. That's all I've got- so very helpful.

 

[Tomswife]

Mjt. Love your ALS attitude.

 

[Mary2]

Some nursing homes have hospice beds....if you can find one that takes a bi-pap patient that is. Is the hospital doing any of the leg work of trying to find you a nursing home with a hospice bed....so Medicare pays?

 

[Tomswife]

No hospital does not help. I do think he will be better cared for at home. I have been updating the agency all week so they have the staff ready. If we do hospice that will probably be at home.

 

[MJT]

Please keep us posted. I hope you can get rest or a break. Mary, is the service today?

 

[Marnes77]

Hi all. I am pretty new to this roll call, and not entirely up to speed on who everyone is and where they are on their CALS journey.

I am so sorry for those who have recently lost their PALS (Mary2, think that goes to you in particular right now.)

MJT and Tomswife, your PALS seem to be quite progressed and in need of a lot of care currently. I am so sorry for you both and everyone else at more advanced stages of this monster.

MJT, you asked how I am earlier. Thank you for thinking of me. I really appreciate it.

I am many things. Strangely paralysed, yet in perpetual motion. Functioning at a basic level (work, home), trying my best to support my PALS and parent my daughter. Running between two homes. Often feel like I am failing. Sometimes I give so much to my CALS my girl gets less, in terms of my emotional presence and maintenance of our home. I need to work on that as she is equal if not higher priority to my CALS. But there is no roadmap here. What are you supposed to do with so many demands on you? I can only do my best.

I just wish we were all under one roof. At least less logistically challenging.

Anyway, I am ok, thanks. In an ALS way. I am sure you all know what I mean. Life since DX is an alternative universe. I feel so disconnected and alienated from "normal" people doing "normal" things. I can hear kids playing outside, neighbours chatting, and it hurts.

Mostly I just feel sorrowful. So sorrowful.

Sorry for rant. I know you are all in the absolute f***ing horrors too.

Lots of love to all.

 

[Tomswife]

Marnes. Your life is very complex and very demanding. Too demanding. When you are propelled forward with love for your daughter and your guy, the love does not give you extra time or energy or skills. The love enables you to focus on them. I hope things get easier for you. I am sure your daughter knows you love her and are doing your best.

PALS and I are retired and empty nest. Much easier to walk this tightrope.

 

[Marnes77]

Thanks Tomswife for recognising and acknowledging the complexity of my life, and the demands on me. It's inhuman and unsustainable. I don't know how long I can continue. Nor how to make things less complex and demanding, especially as his disease progresses. I can't quit work or parenting, or let my home fall apart, the bills go unpaid. Nor can I abandon my beloved PALS.

We can't simply just move in together now either. Ideally, absolutely. But realistically, not so sure. Kids at different ages in different schools etc.

It's so stressful and overwhelming.

I feel so cornered by life. It just feels like checkmate. Every way I turn I am f***ed.

 

[Tomswife]

Are there LCSW who can help you work through solutions. I don't remember if you and PALS live in nearby towns. In NJ you can work things out with board of ed to keep children in a school when you move so they dont change schools till September. I know its been done.
Gee whiz. I wish things were easier for you.
Praying.

 

[MJT]

You wrote that your situation is unsustainable. You are exactly right. Is there anyone who can help you? Friends, family? Is there a local ALS association? Maybe they have resources they can recommend. A meal delivered to you once a week could be a big help. Surely Ireland has a church with a women's group that would love to help you! I've never been, but it seems "churchy" to me!

You are doing your best. We are thinking of you.

 

[Tomswife]

Tom can no longer write or point to letters. He can shake his head. Communication is very difficult.
Are you in pain.
Is it about your body? Then I have to walk through body parts.
Want Bipap? Suction? Need to BM?
Listen to book? TV?

It can take 15 minutes to find out what the issue is. It is extremely tiring and frustrating for both of us.

 

[MJT]

Today has been hell for PALS. I feel nauseous from stress. That's all.