CALS Roll Call Continued

[affected]

Oh Mary, I can feel your exhaustion.
TBH I'm disappointed that your son and wife came and you made the meal - can they step up and help?
I didn't get real help from Chris' adult kids so I ask with full realisation that doesn't always help.
Can the caretaker not get him up alone since you do it alone the other days, so that you actually get a break?
I can imagine you can barely even think of what will help now, your brain just needs to stop and your body needs to rest.

I'm so sorry you are at this point, this disease is beyond cruel.

 

[wishmobbing]

I thought exactly what Tilly wrote, haha, that's eerie. But yes, if cooking ribs is not your special little happy place, then make visitors bring food. Put others to work in whatever way helps you. Better yet, explain your situation, how organising help is work, too, and encourage folks to find one routine task that they can do every week, kind of a help subscription.(But I totally get how that would be too much too figure out.)
Well, any shortcut is allowed. I, for example detest the huge kraken Amazon is but put my principles on pause while caring for my boyfriend and getting a good taste of the CALS lifestyle.
If you can do that job four days a week, a professional caregiver should be able to do it three times a week. I understand that you probably have better communication with your husband and that he might only feel safe when you're around. It was something like that with my PALS and some of the caregivers coming in. If he didn't trust them to the listen what he wasn't able to say but had to spell out with his eyes, he asked me not to leave him alone with them. As a compromise I lounged nearby, getting off my feet for a spell, playing on my phone while keeping one eye and ear on the night routine the caregiver did.
When they did a good job, he learned to be comfortable with them alone.
Sure, sometimes it's better to have two people. So you might want to help out of empathy because you know how exhausting it is to do everything alone.
You mentioned maybe getting more counseling. If you feel like this is a place that helps you, where you can relax, good. If it adds to the emotional rollercoaster and feels like another task to get into your schedule, more therapy to me sounds less appealing than some other dedicated time to get away. Maybe it's weirder to say "I need to get to a beautiful park and read a book at tuesday at 3 p.m." than to say "I have a doctor's appointment", but stuff like that will make you survive and there shouldn't need to be a medical reason to take care of yourself in whatever way suits you the best.
Big hugs in these hard times!

 

[Mary2]

Thank you for your support. I have an evening caretaker here now. This is her second time here and she seems independent. My day time caretaker is 61, blind in one eye and has a slight limp from a stroke. However he is vaccinated which is a big problem around here. Only 1/3 of the caretakers at the agency are vaccinated despite in services and educational seminars that the agency has run.
This caretaker only got vaccinated because he was working at a nursing home at the time and they forced him.He probably has not had any boosters. There is also a shortage of caretakers around here. I hired the one I have now in the evening privately and she is making pretty good money. The day care taker is very nice and does put PALS on the commode himself. I am so tired now, I can't drive so I will have to hire even more help. My son had me make scrambled eggs on Sunday and I thought strange that he is not doing this...but I really think he likes the idea of his Mom making eggs for him. He is pretty hands on otherwise with the hoyer lyft and commode and everything....he lives 2 hours away. We are on our own here. All the family is up in New England.

 

[Mary2]

The GA heat is really humid. We all live in the air conditioning and look out windows this time of year.

 

[vltsra]

Wednesday again. My PALS had a great day yesterday and a bad one today. He has a lot of mucous when using the nasal pillows but insists on using them. I have tried everything to help alleviate his discomfort.

The catheter is causing problems as well, not the least of which is the fact that the hospice nurse can't seem to help with it. His urologist talked about taking it out which might be less convenient but make him feel better

He finally agreed to sell the foosball table and the 1976 sports car that has been taking up the only space left in the garage and has been nonoperational for 25 years. I know he was clinging to these things from his youth in hope he would get well. He tells me now that he isn't far from death and it makes us both cry.

Lately I feel like I am in a daze. Despite having nighttime care I still can't sleep well and awaken at 5 am. I'm exhausted from all these years but somehow still hanging on.

V

 

[lgelb]

I am so sorry, V. I know he has resisted that knowledge, but maybe in a weird way it can bring you both some peace as well, that he has reached this point and, for now, you are in the same place.

 

[Mary2]

I am sorry V. I know it will be very sad to sell the car. These are hard days for you. I hope you and and your PALS can find time to be together away from caretakers and the daily routine.

Emory wants my PALS to go on hospice. They don't seem to promote palliative care. We found a palliative care company that also does hospice. We will meet with the palliative care nurse in August. With palliative care, PALS could still take the riluzole and all his other medications. We got the idea for palliative care from you and your Pals and we thank you for this. It unsettles me that Emory would be suggesting something where the riluzole must be stopped when palliative care is an alternative.

 

[ReginaS]

We had switched from the ALS clinic to palliative care as Tom wanted to talk about dying and what to expect and the drs in the ALS clinic could not or would not answer these questions. We were a bit puzzled by it and asked to transfer.
For us, the difference between palliative care and hospice care was that for the palliative care we had to go into the clinic and hospice came to us. After about 3 appointments things had run their course in the palliative care clinic. Tom was done with visiting clinics - it became too exhausting and it cost him much effort just for hearing that there was more decline - which he knew anyway. There was nothing to be done any longer. So hospice seemed to be the appropriate option. We had to make sure to have all the necessary equipment before we started hospice and even then, we had to give back all the equipment and use the equivalent equipment from the provider that hospice preferred. We made sure hospice allowed us to use it. Hospice will help some with care.
If I remember correctly once he started hospice he gave up all the meds as swallowing had become rather difficult and he did not have a feeding tube. He did not really want to prolong that phase.
Mary, I hope things will go OK for you and your husband.

 

[Mana]

Mary,
I hope you were able to get some help and rest this week. I'm thinking of you. Hope this is still a place of support for you.
-Mana

 

[Mary2]

Thank you Mana. I am better rested now. I hope you are going along okay.

ReginaS, that is a good point about having to go out to the clinic. Right now we are doing visits by Telemed and this palliative care is by telemed. I am still not sure how the palliative care works. The person we spoke to said we would be assigned a nurse practitioner. I hope she can write all his meds. We should learn more this week.

V I hope your week end was quiet and that you were able to enjoy sometime with your PALS and also outside your house.

 

[ReginaS]

We were pre-covid. I did not even think of that. You might never have to go to the clinic.

 

[rmt]

While I was in Hawaii on my family vacation, the VA tried to move my husband to a rehab center. Something happened in the transport ambulance (the current theory is that he choked on mucus) and he couldn't breath, so they intubated him.

His son was in town while I was gone, and we decided that I should stay in Hawaii and finish my family time as long as my husband was reasonably stable. I tried my best to stay in the moment and enjoy the time with my family, but it was so hard to not spend every second thinking about my husband. I talked to the ICU doctors several times a day, and I got back this morning.

The doctors didn't think he could safely come off the vent, but he wasn't improving, so we were at a point where a decision needed to be made. My husbands wishes were very clear that he didn't want to stay on a ventilator indefinitely. He looked so miserable.

His children and I all agreed that my husband would want to try to get off the ventilator and not go back on regardless of what happened. So at 2:30pm this afternoon we removed him from the vent. It is now 9:30pm and he is still with us, though the doctor doesn't think he will survive more than a few days and possibly not even tonight (though she didn't think he would survive for more than 30 minutes off the vent, so who knows).

But for 3 hours after we removed the vent, he looked so happy and spent the entire time looking at me, holding my hand and rubbing my arm. He looked so happy I was home and with him. Whatever happens next, I know we made the right decision and that my husband is happy and peaceful. They are keeping him on morphine and he seems very comfortable. My heart is completely broken.

 

[lgelb]

I am so glad that you are all with him, and that he is passing in peace. But I am very sorry that this is his time.

 

[affected]

oh RMT I'm so sorry things happened this way, but how wonderful to see that he knows clearly you are back and that his wishes are being followed. no matter how hard this gets over the next hours and days, you will always know this. Sitting with you, and feeling your pain.

 

[Jrzygrl]

My thoughts are with you rmt. Your love is the best medicine for him.