CALS Roll Call Continued

affected

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We didn't have RTD here either, but I titrated Chris meds for him at home over his last days and he passed very peacefully. Can you discuss your wishes with your doctors and what medications you have at home and how you can use them for the kind of needs he has?
Is your PALS feeling like he would like to make a decision to end things at a point he feels is enough, which may be before his body is actually shutting down and he is in his end days? Is he clear on his wishes for this? Hard questions, but so necessary for you to help him effectively.
 

vltsra

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Mary are you being seen by a palliative care doctor? If GA is not a state with physician assisted death palliative care might at least give you the information you are looking for.

We had a hectic first week in hospice. Nurses visits Friday, Monday, and yesterday which prompted me to tell them we don't needs his vitals checked on a daily basis. Once a week is more than enough.

My PALS has been anxious and emotional. I've told him that just because we are in hospice doesn't mean there is a deadline here. I'm hoping he gets some counseling support, which is one of the main reasons for hospice to be involved. We'll just have to see how it goes. He is ever weaker.

V
 

Mary2

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V, My strength and courage that I do have I share with you. I would imagine that the first week on hospice is an emotional roller coaster. I was thinking about your PALS and if someone were taking my vitals all the time this would not help my anxiety or emotional state. So glad you told them to ease up on this. I do hope the right meds and people can be found to ease PALS anxiety. That is the excellence Hospice is known for.







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rmt

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V, I hope hospice can give you and your PALS some help and comfort.

Mary, I'm sending strength and support to you.

I'm currently in the ER with my PALS. He suddenly started having episodes of incredible weakness and tiredness on Tuesday night. We thought it was most likely an infection since he started running a fever but it is looking like a heart rhythm issue. He has been going between a-fib and SVT. They finally seem to have his heart rate down which means he can get into a room if this continues for an hour.

He had a-fib 4 years ago at the same time his ALS symptoms were starting. He had an ablation and had been in sinus rhythm until 2 days ago. I don't think there is any correlation between ALS and heart rhythm issues. Though they did say this episode could be caused by an infection. They are doing a bunch of cultures now and have him on antibiotics just in case.
 

affected

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Oh @rmt how are you both doing now? heart things are so scary.
 

rmt

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My PALS is still in the hospital. His heart rate was pretty good today but then tonight it is high again. The good news is that his breathing issues that have gotten a lot worse in the last few months may be from the heart issues and not ALS! His CO2 and O2 levels are normal which was a surprise to me. So maybe if they can get the heart rate down his breathing will improve. The doctor is confident they can get the rate under control so I'm hoping he is right. It is scary when his heart is beating so fast!
 

lgelb

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If his HR has been high/irregular for a while, getting it down should certainly help his breathing. Thinking of you both!
 

Mana

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Robin, I am so sorry that you're in such a frightening situation. Sending all good thoughts to you.
 

Bestfriends14

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I'm losing steam here. Everything I try to do for my husband he complains about. If he's choking on his mucous and I try to give him warm lemon water, he complains, makes faces, and is resistant. His seat on his wheelchair is uncomfortable, so he'd rather complain constantly, rarely go outside, but not reach out to the seating clinic to see what they can do. Anything I try to cook for him that is remotely good for him, he complains about it and says he doesn't like it.

Please tell me how you all continue to have patience, because at over 5 years, I'm losing mine. I'm wrung out and am losing steam, and honestly, sometimes I just want to walk away. If I say anything about being tired, I get back "well, I have ALS so I'm the one who's actually tired."

I need talking off the ledge.
 

vltsra

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Best friends do you have any caregiving support? I could not do this without help but it is not cheap and not covered by Medicare (to the shock of many of my friends). Can you reach out to your local ALS Association for caregiver referrals? Do you have family members who can give you a break?

My PALS is generally good natured but very particular so I deal with the same sort of complaints. I'm constantly addressing some position change or equipment adjustment. So I hear you loud and clear.

We have a lot of issues with mucous. Our pulmonologist told us that some people can't tolerate the nasal pillows but he still insists on wearing them. I use Flonase and glycolpyrrolate to little effect.

Somehow you need a break. We are all at various stages in this journey and none of it is easy. I hope you can find a way to carve time out for yourself.

V
 

Mary2

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Hi Best Friends, 5 years in, you must have physical exhaustion. My PALS has many of the same constant complaints. I have help 3 days a week and am called throughout the day to help my PALS anyway. I have to leave the house for a real break. I know if you had hospice, some respite care might be provided. Our ALS Association awards 1000 grants to the first 100 applicants every 6 months and this can be used for a caregiver. I do try and set limits with my PALS. I am in my 60's and simply do not have the energy to do everything and must set limits. Sometimes I. say unless it is an airway issue do not bother me for the next 30 minutes. Sometimes I start the evening care, go lay down for a while and let PALS snooze and then finish the care later on. i have never missed doing perineum care twice a day, but yes I have skipped upper body wash ups. We have an order in for an all roho cushion in the hopes this will make seating better for him. That would go along way to solve my PALS complaints. Does your PALS have a gtube? Maybe he can begin to get some nutrition through the tube. We both take anti-depressants which helps. I take xanax for sleep and he takes it 2x a day. I have pretty much stopped cooking. My PALS will sometimes try to have something delivered and eat it. I have food delivered just so my quality time is not spent at the grocery store. Sometimes I throw the responsibility back in his face. i'll say your an intelligent man. Why are you whining at me. You are responsible for your care. What is your action plan? V has suggested a Palliatative Care Team approach. I am looking into this. Then it would not be on me to fix all these issues. My heart goes out to you. This won't be forever and it is a question of balancing caregiving time with companionship time. I hope you are able to get some rest.
 

Bestfriends14

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Thanks, V and Mary, for your words of comfort. We do have a lot of help and I'm grateful that our province covers the cost for this. We have someone that comes from 8 until 12 and will often stay later. Physically, I have spraigned (I think?) my wrist moving Wayne, along with doing something with the bicep muscle. This coupled with the emotional exhaustion depleted any patience I had today. Plus, I am trying to complete my masters degree and just wrapped up 9 days of intensive exams so this, too, may be exacerbating my issues.

Wayne does not have a gtube as he can still eat well, but his breathing is terrible and his nose pillows contribute greatly to his excess mucous. Are there different nose pillows that could decrease mucous?

I needed a safe place to vent so I hope I don't sound a bit whiny. Being in Canada, Alberta specifically, allows us to live with ALS as best as one can, so I am grateful, but I do get fed up.

Thanks again ❤️
 

lgelb

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There are many kinds of nasal masks. If you buy from cpap dot com, many have free 30-day returns if they don't work out. If the prong type doesn't work (though there are several different kinds), maybe a similarly low-profile type that is one long cylinder instead of prongs, or a low-profile cup style, would less stimulate the flow.
 

affected

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Bestfriends I so hear you! This is not something just anyone can do, and doing this over a prolonged period of time is a marathon no one else can understand. Comparing your situation to his is unfair as you have never once thought he has any of it easy, but your situation is as hard as it gets too.

I believe venting by CALS is really healthy, as it allows us to release that awful tension, and go back to our PALS ready for the next round that this disease dishes out. I hope you always feel safe to vent here.

Wow, 9 days of exams on top of all that is going on, exhausted just took on new meaning! I hope you cut yourself a break on this, and allow yourself to catch up a little. In the meantime, vent it all out. We know beyond doubt that you are dedicated and doing every single thing possible to give your PALS the best life he can have.
 

vltsra

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Another week with hospice on board. My PALS was asking the nurse yesterday about withdrawal of the bipap. He wanted to know how they would manage it. The chaplain came over today and I think he had a good visit.

As hard as the past 7 years have been, I am struggling with this. While the caregiving has nearly wiped me out I don't think I'm quite ready to lose my husband. I have been pretty emotional. I'm trying to support whatever he wants but it's so hard.

V
 
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