CALS Roll Call Continued

[Tomswife]

Tom went to emergency again last night. He was admitted to hospital with aspiration pneumonia.
Will be here a few days they said.
Aspiration pneumonia....the two words we all learn at dx.

 

[lgelb]

So sorry to hear! Thinking of you.

 

[Mary2]

How is Tom doing this morning?

 

[MJT]

Yes, Kathy, you've been in my thoughts, as well. Mary, I'm so glad you posted here bc I wanted to tell you that Paul KNEW you loved him, and any sharp words, I'm certain, were quickly forgotten by him. He would want you to forgive yourself for simply being an exhausted human. I appreciate you sharing this detail, as it encourages me to hire help sooner than later. I'll do so in honor of you.

 

[Tomswife]

Tom was admitted friday night and wont be discharged until tues or weds. He has to have xray and lower white blood cell count to be discharged. Then they sent him home to continue oral antibiotics.
The nursing care is uneven and that is frustrating for me. He has not had a body wipe/wash yet. No one checked. Cleaned and re bandaged tube site. They don't turn him on his side like we do at home. Not their practice. They just shift him with pillows.
My other concern is backflow of the condom catheter. The nurses were not concerned. Ignored me. One walked away from me. There is not enough gravity to ensure flow. Where is Sir Isaac when I need him.

 

[Mary2]

Wow! Kathy, the nursing care doesn't sound that great! At least he is getting the antibiotics he needs and hopefully will be home early in the week.

Yes, MJT the question of help is muddled. For me, I think it would have helped the situation as I was physically tired. I just walked around the super market and was amazed I felt okay walking along the aisles. When I was tired, I brought prior issues in the marriage into the situation. My biggest anger issue was that he was an afternoon person and I was a morning person and I spent 30 years alone on vacations and week ends in the mornings. I will tell you on the other side...the side of being a widow...one feels pretty stupid and regrets that one ever complained about something as banal as this to an ALS patient.

 

[lgelb]

We are all only human, and that comes with regrets. But when we are exhausted with grief and lack of sleep, those regrets can seem bigger than they should be. Every one of us has done our level best, and every one of our PALS has been aware of that -- all we can give, is all they can ask, really. That is the commitment each of us made and have honored.

 

[Mary2]

Thank you Laurie for your kind words. I really gave all I could. Sitting here now, I realize how very, very tired I was.
We did have some good afternoons listening to audio books and watching murder mysteries and other movies.
I am very proud of my PALS. He was very brave. I AM ALS has a bereavement group and they steered me to one on Facebook for caregivers of ALS patients. This facebook group meets by zoom once a month and will meet on Monday. I will try going to a bereavement group in person at the hospital as well....just to start getting back to seeing people in person.

 

[Mana]

So sorry that Tom’s nursing care is so slipshod. I know that’s infuriating; dangerous for him and exhausting for you to worry and advocate for him. Thinking of you both this morning.

 

[MJT]

Mary, I'll bet bringing up the AM/PM argument was misplaced anger at the hopeless and horrific situation. And I'll also bet that after 30 years of marriage, Paul intuited that and didn't take it to heart. I've experienced some misplaced anger with my neighbor, but he deserved it. Glad to hear of your steps toward healing.

 

[Marnes77]

Sorry to hear. Thinking of you.

 

[MJT]

Marnes, how are you today?

 

[MJT]

We had our clinic appointment yesterday. We have to return in 2 months rather than the usual 3, and they will discuss/order Hospice.

 

[Mary2]

Hi MJT...so this path that we are on/have been on is now taking you to the hospice phase. We resisted hospice for 6 months as I wasn't sure what we would want to treat as compared to what hospice would want to treat.
For us, we went on hospice at the right time for us.

I hope you find a hospice service with lovely nurses and caring aides. You will still be doing most of the caregiving, but having more support is always a good thing.

 

[MJT]

Thank you, Mary. Nobody except another CALS can understand the pain we are in. We shouldn't have been shocked, but it still took us by surprise somehow. I'm grateful that my PALS has been clear about his wants. I've been thinking of you.