CALS Roll Call Continued

What qualifies as good quality of life is very individual and a moving target.

When he was just needing the wheel chair and still being pretty independently with it, my PALS said that he would very much like a plateau now, please. He would have been perfectly fine to live with that level of disability forever and I felt the same. A few month down the road he already had a PEG, but did only use it for water/meds and was practicing to wear the Bipap. Speech was going fainter every day. Again he said that he was hoping for a plateau now, but there was a sense of emergency with it. Expectations adapted, still good with living in general.

But things declined steadily further and maybe two or three month later he told me (now spelling with his eyes) that now he hopes there's no plateau and he wants the last stage of his ride to go rather quickly. That's where he drew the line, he ate less and less and ALS did the rest.
 
Tillie, things are a bit different in the States. Basic health care staffing, let alone palliative care (which was never a focus here anyway) is at a new low, and there are great disparities as to the availability and agendas of hospice agencies.

As I often say, if you want hospice and find one you like, great. But we have very few "facilities" for that here (e.g. there is one short-term facility in the Seattle area, outside the city, and one longer-term one that Lenore's D is in), in one of the country's largest cities, so that is still going to be a die-at-home thing, and a lot of unnecessary suffering can go on if one has the naïve view that a simpatico care team is just waiting in the wings for your call.

My point was, not measuring the morphine, combined with natural impulses to consume less nutrition at the end, is the most common mode of death among US PALS, with or without hospice. There is no point in pretending otherwise. If pointing out that option exists avoids one minute of unnecessary suffering, which I know for a fact it has, that is the idea.

Whoever else is in the equation, every PALS has that right, and every CALS has the opportunity to make it so, whether they take it up or not, and whatever they do with/for their PALS, by definition, they are never alone.
 
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You totally misunderstood my post Laurie, please don't feel you have to correct every word I said, we all have input here and I was giving some support to the poster from my perspective. I was only talking of no right or wrongs, and of options/choices for people on all levels. Peace.
 
My friend had her husband pass in a real hospice here in middle GA. Each room had a court yard view and I think a door that led out to the courtyard. They allowed dogs and the nursing care was excellent. My understanding is that it is difficult to get into that hospice. I have no idea how they administer the morphine. I think at this point we will take from our savings and increase the help in the house, if I can find some evening help and ride this out to more of an end point. We are suppose to talk to the Emory social worker next week. I don't know what she will say. I did have an organizer in to help me unpack from the wedding; I was so tired. She was very helpful. I would hire an organizer again. Also my son will come get his dog; this will help. The dog wakes me up at 4 am to go out and be fed every morning. This is taking me over the top exhaustion wise.
 
Options and having some plan in advance I think really help Mary no matter what you decide is right for you.
An organiser was a fantastic strategy, I'm so glad this proved to really help. That dog does need to go home, I can't imagine your exhaustion. I hope you recover a little on that front this week.
 
Still sleeping most of the time when I am not caring for PALS. I have asked the agency for more help 2 evenings a week. They are pessimistic that they will find anyone. I want the person to be vaccinated. I have posted on a website but no responses yet. I have reached out to some on the same website but also no responses. I guess by the end of this week I will need to reach out to another agency.
I have physical exhaustion and can't seem to sleep my way beyond it.
 
Mary I really hope you can find nighttime help. It makes a difference.

Even though I do have help, I am also just exhausted. I often wish I could sleep for another hour but I must get up every day. I feel as though I could sleep for a month and then perhaps I could get my energy back. So I understand how you feel. It's more than just physical but also emotional exhaustion isn't it.

V
 
The emotional exhaustion is brutal. Hope you can get more uninterruptes sleep, Mary.
 
Mary, I hope you can find some help so you can get better rest. The exhaustion makes everything so much harder.

After 4 years of slow progression and high functioning, my PALs has progressed so much in the last 3-6 months. He can still do a lot of things for himself but everything takes a really long time. I feel like every day he is getting noticeably worse with his mobility and his ability to do things by himself. His aphasia makes it so hard to figure out what he wants and needs. He sleeps a lot. His breathing is getting worse. He is still OK when sitting or sleeping, but if he moves around at all he gets totally winded. He doesn't want bipap, so there isn't much to do about it.

We had a PT and OT assessment this week and they are ordering a bunch of equipment from the VA that should help with his mobility. But honestly, he is going downhill so fast, I'm not sure what things will look like in a few weeks. Interestingly, when they asked him if he wanted to have CPR if his heart stopped, he gave the thumbs up! I'm not sure if he has really thought it through, but I think it is because he still is hoping that some magical cure is coming soon. It is possible that he just didn't understand the question, so we are going to keep talking about it to make sure I know what he actually wants.

Lately I've been feeling like I'm doing a terrible job as his caregiver. My husband is totally unwilling to let me help him with most things and I'm so worried he is going to fall (he hasn't yet). I want to keep him safe, but I don't know how to do that since he wants to do everything like he used to. I was worried the occupational therapist was going to be horrified by our house and how he does things, but she was totally fine with everything! So that made me feel better. She had great suggestions for safety equipment but otherwise she said he's doing great and is doing things "as safely as possible". So I'm going to try to relax and not get so down on myself.

My PALS's sister is coming to visit this weekend. She is a wonderful sister to him and a fantastic sister-in-law to me. It will be so nice to see her.
 
We signed on for hospice today after a few weeks of consideration and more decline. I finally had nurses come out to look at his catheter and possible new bedsore so they could help me with these things.

I'm not really expecting a lot given that we have already been caring for him all this time with advanced ALS. I'm looking for some spiritual counseling for him as he is very anxious and restless lately. I also want them to be here if he says enough is enough and I want to stop bipap treatment. He's been saying lately he is ready to go

We've both been crying some and both very weary. He needs help so frequently now, either repositioning or adjusting his mask or pillows or he is either hot or cold. I cannot watch a movie with him quietly because he needs so much attention, and at the end of the night I am exhausted. I suppose he can go on for some time this way provided he wants to.

Meanwhile our daytime caregiver is a bit hostile toward hospice. I've put a few feelers out to see if someone else might want to work days but the thought of finding a new caregiver is also stressful and exhausting. I just want to sleep these days but must keep going.

V
 
Oh V, I'm sending good thoughts your way. I'm glad hospice will be there to help guide you. Too bad the daytime caregiver is hostile about hospice. That makes things so much harder. And right now, you need things to be easier!
 
RMT, I know how hard it must be to watch your PALS decline. We went from a cane, walker, scooter and 2 wheelchairs. IT was hard. I am so glad the OT was supportive!

V I am thinking about you and your PALS. I hope this hospice turns out to be a comfort for you and your PALS. I wonder what is going on in the caretaker's head.

I posted on a known website for help at a very good hourly rate and have received no interest. One lady applied and had multiple certificates in holistic health type things. I asked her if she was interested in working with an ALS patient and she never responded back. My current caretaker is going to work every other Sunday to help me out on weekends. The agency he is through has no one else to send me.

For Father's day, I am getting PALS a t shirt with a picture of the Bride and the Groom on it. I hope it makes him smile.
 
V I hope you can find a balance of meds to help with his distress.
At this point, it may be a matter of increasing the meds a little every few days to keep him in a place of calm and without the fear. Are you receiving advice from the hospice on titrating his meds to truly give him a peaceful place?
I hope you can find strength, but also that you can get some rest. Again, titrating his meds to how he is could give you a better bread between each lot of care duties.
 
Robin, I hope you have a great visit, and V, I hope hospice helps you both. Mary, esp. since we are heading into summer, I would try listing your needs with local CNA, pre-nursing, RT, PT, SLP, and nursing programs.
 
We asked Emory about Right to Die in GA and were referred to the social worker. She said GA doesn't have right to die and that Emory doesn't keep up or comment about the laws in other states. I don't know about this response. I don't expect them to be giving out legal advice but I guess I feel an avant guard ALS clinic should be able to have some suggestions about where to go for Right to Die. She spoke to us about hospice instead.
 
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