CALS Roll Call Continued

Mary2

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RMT I hope dinner with your parents was enjoyable! We had an enjoyable week end here. My son and his girlfriend came and we designed the Save the Date cards (really they did and PALS and I watched!) and she showed me some bridal dresses she has been looking at. PALS is spending more and more time on the Trilogy, but his eating seems to be okay. He would prefer to be on the Trilogy while he eats, but that doesn't seem possible. Will he have to give up eating because of his respiratory status? As a caregiver I wonder if the tube feedings will be easier. Planning what food to purchase, buying food, putting it away, cooking, often feeding PALS, then cleaning up on top of of the other tasks is work. I also wonder how much time do we have left together. Is there a respiratory test that can give guidance on this?
 

Mary2

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Also we are at a point where he either wants the Trilogy on or off every hour or 2 so I am adjusting the Trilogy 10x a day or more. I guess this is just part of being a CALS.
 

lgelb

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With a nasal mask he can eat on the Trilogy as long as his swallowing allows. And it sounds like he could use a more comfortable mask anyway.
 

JimInVA

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My wife used a nasal mask while awake, and sitting up in her PWC. She only used the full-face mask if she was going to sleep. The nasal mask allowed her to eat and drink for as long as she was still able to swallow.

My best...

Jim
 

Nikki J

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Mary to your question about a feeding tube being easier for CALS. Yes! A thousand times. The feeding tube is a snap. We used a pump but fed several times during the day on request. Took a couple of minutes to start and then a couple of minutes to end. More work if you blend your own but still if you are at the feeding him by hand stage it saves so much time and energy. And less stress for both of you if choking is an issue
 

vltsra

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Hope everyone had a good Thanksgiving. Mine was quiet, as expected. Just my PALS and me, and since he no longer eats by mouth I just made myself a small vegetarian dinner.

Mary, using the feeding tube was a relief for me. I spoon fed my PALS for over a year as he lost the ability to use his hands. He had a setting on the bipap that allowed him to eat, but frankly it didn't work that well for us and tended to blow food out of his mouth. He preferred to take it off while eating. Sometimes we had to take a break and put the bipap back on for a while. He started aspirating constantly in early summer and we went 100% tube feed then. He says he misses eating but I am using the cough assist far less than before. He often asks me what I had for dinner and I tell him "leftovers."

My PALS has been on his bipap full time for over 2 years. After a while we just both got used to it. I do have to occasionally adjust his mask but it's not 10x a day. Perhaps you can leave him on it for longer periods.

I finally had to break down and hire a nighttime caregiver. Now we have 2 caregivers on board. Despite the wonderful Alternating Air Mattress (thank you Jim) he was still awakening me 4 or 5 times a night. I am getting used to the upstairs bed in the guest bedroom and trying not to worry about spending down all of our savings, but I can't go on without rest. She's been here 2 nights now. The cats are fighting over me upstairs, but other than that I feel better today after 2 nights of sleep.

V
 

affected

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Mary let us know if you work out some mask solutions.
Hopefully that will help him keep the trilogy on for longer periods which would be better for you both I'm sure.
V while it's hard to watch your savings dwindle, I hope you can get some really good rest and find a way to have night help that is affordable. Sleep is so underrated until you are exhausted and realise how much we need it.
 

Mary2

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Thank you everyone for your responses. I do appreciate the responses. PALS is going to call the respiratory therapist to discuss other mask options. We discovered he can eat with the Trilogy on if I feed him but he can not feed himself with the Trilogy on. It is too much to manage. We attended an ALS Zoom support group meeting and they discussed that many PALS are eligible for hospice much longer than 6 months, but what does one gain from Hospice? We really need someone to come in the house and stay, not just do bathing and leave? Also they mentioned those on a Trilogy should have a generator. Anyone have any thoughts about generators for a ventilator. V I admire your ongoing grace and strength as you navigate trying to provide excellent care while taking care of your own health. I pray I have the patience and strength.
 

lgelb

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Everyone should sign up with your power company to be on the priority list for power restoration because you are dependent on medical equipment that is on the grid. They have a checkoff for hospital bed, power wheelchair, xPAP, etc.

Since the Trilogy comes with an internal battery, and you can buy extras, a generator is less of a concern because you can store charged batteries though of course they don't stay charged forever so you would want to rotate and can charge when convenient at home.

But the generator question (and of course there's an in-between, not generators, but other precharged power sources depending on the device, like backup batteries for hospital beds and spare batteries for wheelchairs) really goes to how often/likely there are power outages where you live. When Larry was alive, we lived downtown with buried cabling so power outages were non-existent. If he were alive where I live now, I'd be more mindful of storing batteries. You can also consider how possible it would be to get to a neighbor's, hospital, fire station, community center, etc. that has generator backup or other auxiliary power or is on a different grid, were there a prolonged event.
 

vltsra

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Mary, we have a backup battery and 2 bipaps. Thanks though for the reminder to charge them all up.

I pray every night for patience, courage, and strength. Sometimes I need one more than the others.

V
 

Mary2

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The respiratory therapist visited PALS and found another nasal mask for PALS to try. This nasal mask is a DreamWear by Philips. The air hose sits at the back of PALS head and then divides into two air flows, one on each side of the head. The mask allows PALS to feed himself more often because the air hose isn't in the way. And the Dragon dictation system has been much improved with this mask. For PALS this mask has been much quieter. The therapist did make some adjustments to the Trilogy to adapt it to the mask.
 

affected

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This is great news Mary
 

rmt

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I'm really struggling these days. My husband's physical changes in the last 3 years were hard to deal with, but the emotional and mental changes over the last year are so much worse. It is crushing my soul. At this point he has a "probably PLS" diagnosis, and is physically still very independent, so this could continue for years. Honestly, I don't know how I would survive for years like this. He started on an antidepressant so maybe that will help.
 

affected

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RMT I can't imagine years. I hope an antidepressant helps him - is he aware about the changes?
I can't remember if you see a counsellor at all? I saw one regularly and it was really helpful for me to have a completely independent person that I could work through how I was coping with this stuff, and what strategies I could use to help me. It was all about helping get me through it. Really hard stuff, and it really does wear you down.
 

rmt

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He recognizes some of the changes but not everything. I'm not seeing a counselor but I think I will start after the holidays. This is just so hard.
 
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