How are others faring with respirator care?

pinky

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After six years of PALS' ventilator care, my energy is flagging. My PALS will be 79 in November. He had respirator onset diagnosed in July 2013 and required a ventilator to continue in this life 10 weeks later. During that time he has lost the used of his limbs almost completely, rejected eye gaze for communication, retains facial expressions and a little motion in his left wrist. He can still sit when placed in his power chair and properly secured. In spite of all, he is in good spirits. My spirits and energy are another matter. I work out twice a week, get out with friends and try to keep my spirits up. Our family has been very kind, but I see their spirits tiring. Some days I wonder how one person can claim the energy of so many people? and, of course, claim so many resources? I remind myself that life is precious, but this is a hard road.
 

affected

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I hope PALS stay away from this thread as it is a very personal CALS only topic and does not at all reflect on loving someone.
My husband was rapid progression and we don't do vents in Australia so I can't say I know how you feel.
But I can try to imagine the 24 hour drain, and year after year it is so huge.
I wish I could give you some kind of answer. But I hear you and acknowledge that this is a huge thing as it is nearly your entire life 💙
 

pinky

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Thank you for the empathy. I will say that my love has to be there to have done this for six years
beginning at our 50th anniversary. We had 50 really good years which make for strength. Still very difficult though.
 

KimT

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Ooops, too late.

Pinky, I'm so sorry you're going through all this. It must be exhausting. I was primary caregiver for my mom (colon cancer) and my dad (COPD). They each had their set of challenges but I was young, strong, and very healthy. I can't imagine going through it at my age much less yours.

I'm certain many CALS here can relate and will respond.
 

ReginaS

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I have often wondered how people do it when ALS goes on for many years. And then again, how can one not do it? It must be very, very hard at times for all involved. My heart goes out to you pinky.
My mother took care of my father for decades. He had a MND. She took really good care of him and in the end she could barely go on. It was hard for both of them. They had a special relationship.
Today I visited a friend whose partner has ALS. We are getting along very well. Caregivers and past caregivers need friends. Sometimes it's easier to talk to someone whose life has been touched by ALS too.
 

lgelb

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It is a hard road, Pinky, and one where it is best to be honest with each other because sometimes that is all you have. I don't mean to the minute of course, but overall.

I'm glad you had those years, but they don't compensate for these years. Nothing does.

You do not ever have to pretend his disease is not taking a toll, but of course the best way to keep everyone's spirits up is to keep alert and harvest the moments of experience you can share, that have nothing to do with ALS.

Yes, life is precious, but so is our ability to define "a life worth living" if we so choose, which many P/CALS here have opted to do over the years. If/when your husband/you go in that direction, we can support that as well.

Best,
Laurie
 
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KateEmerson

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Hi Pinky, my husband was respiritory onset, trached and vented before any suspicion of a neurological problem. With help from family, I took care of him for 4 years. Like your husband he overall was in good spirits and like you I cumulatively became exhausted. I use to say " the spirit is willing but the flesh is weak ".

I know how hard it is to maintain the hyper vigilance a ventilated person requires. If you would like to have someone who has been there to talk to, I am available. I could ask one of the moderators to send you my email address. Kate
 

pinky

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It is a hard road, Pinky, and one where it is best to be honest with each other because sometimes that is all you have. I don't mean to the minute of course, but overall.

I'm glad you had those years, but they don't compensate for these years. Nothing does.

You do not ever have to pretend his disease is not taking a toll, but of course the best way to keep everyone's spirits up is to keep alert and harvest the moments of experience you can share, that have nothing to do with ALS.

Yes, life is precious, but so is our ability to define "a life worth living" if we so choose, which many P/CALS here have opted to do over the years. If/when your husband/you go in that direction, we can support that as well.

Best,
Laurie
Yes, "harvesting the moments" is a good phrase for trying to focus on the positive moments. It is true that when care becomes more demanding, the demands of the disease become more prominent in my mind. Hence harvesting the moments takes more focus. Thank you
 

pinky

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Yes, I would like to e-mail with someone who has done this kind of care in the home. I have met one other whose husband was on respirator care but he was in an institution courtesy of the Veterans Administration so it was very different. I am definitely getting to the state where "the spirit is willing by the flesh is weak" more frequently now.
 

pittsburghgal

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Pinky, it is so true that this is "a hard road" and I, too, see my spirit and energy depleted. My husband is not on a ventilator but has a trach and BIPAP. He was diagnosed in 2011 and I have been his only caregiver all this time. The last 5 years he has required a high level of care. He was limb onset but now has only some slight leg movement. His speech is no longer understandable but the eyegaze does not work for him.

My husband is also in fairly good spirits and I find myself struggling at this point to try to be even a tiny bit the same for him. He has no plan on "checking out early" because some how, he still feels his life is worth living. I really can't believe he still feels this way and I do not feel the same way, but I am trying to honor his wishes.

The problem is, I believe that my husband has developed a degree of apathy and does not see (or care) the toll that this is taking on me. We were both in the medical field and he does not believe that any one other than me can take care of him the right way. I was as totally housebound as he was for many years and started wishing that I would die just so that this could be over.

I started taking an antidepressant which really helped me out of the darkness. I told him I absolutely had to get out of the house for a few hours a week and the ALS Assoc. arranged for skilled nursing for 3 hours one day a week. He still insists that I take him to the bathroom, give him his meds and suction him before I leave so the nurse is really just sitting with him and talking to him the whole time but this has helped me a lot. I look forward to it every week.

The other thing I did was join this site, which was a tremendous help. Not only did I get answers to my questions but I felt that I finally found people who understood what I was going through.

I do not want to give you the impression that all is a bed of roses now. As you, and many other CALS know, this is a struggle like no other.

Please come here often, especially if you are having a bad day. We truly get it and will support you every way we can.

Sharon
 

pinky

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Thank you, Sharon. I feel embarrassed to admit that I have a lot of caregiver help when I see that you are working solo what must be 98% of the time. I am 76 and truly believe I could not do that. Your second and third paragraphs are also true for us. Because of my age, I am avoiding drugs and seeing a therapist every third week. The lack of communication and my perceived view of my PALS not understanding my position is very
difficult. He also is not sympathizing with the financial worries I have about my own future. The urge for life is so strong that it blinds him to other concerns, I believe. I understand, and I don't understand. I know that not all PALS take that point of view.

My PALS has set limits on his further treatment which are very strict, and he wishes for a natural death. However, with his breathing problem solved and with the medication he takes for other purposes a natural death is pretty out of reach. This is a very difficult issue for him and understandably so. It is heartbreaking to see this.

Thank you again for sharing. I respect so much what you are doing and wish you strength.

Pinky
 

affected

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I'm so glad you have started this conversation pinky, it's vitally important for CALS to be able to discuss this
 

Ken15

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This is a gut wrenching thread. I applaud and admire you all for your honesty and willingness to "put it out there".

By coincidence, a week or so ago I was thinking of starting a thread about what would happen if a therapy came along that stopped the progression in its tracks; not reversed it, but just stopped, as is. For early progression people, this would be great news; but what about mid and later progression PALS (and CALS)? Could we live with the "as is" indefinitely? This appears to be Pinky's situation, and as we can see, there are no easy answers.

For my own situation, my PALS is totally physically immobile. She still talks, though softly, has started to have difficulty swallowing, and breathing appears to be only slightly diminished, but still functional. Until recently, she read voraciously, did word games, solitaire, etc on her iPad and (via voice-to-text) communicated with her friends. Now, she has little interest in those activities and just binge watches Netflix. She says it drains her energy to do those other things. On the rare occasions I can get her to go out of the house, 2 hours is the max before she tires and wants to return home to her "chair".

Even between us, conversations tend to be quite short - she has little interest in sustaining a conversation, be it about family, her disease or other topics. Since she is C9, some of this may be FTD related - I'm not sure. We are only 2 years from diagnosis, far less time than many here, but the impact on our lives has been painfully dramatic. Thus, it is quite easy for this CALS to empathize with Pinky.

Ken
 

KateEmerson

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Pinky, Fiona sent you a private " conversation " notification , you should see a red mark on an envelope in the upper right of your computer, just click on that and you will see the message I sent you.

Sharon and Pinky, my husband went from being very empathetic to almost none. He did not have FTD. I joined a CALS video support group ( the only way I could " attend") and found this seemed to be a not uncommon experience. I initially was very hurt by it but in learning it was not unusual in ALS I added it to the symptoms of this disease and didn't take it so personally which helped emotionally. On the other hand, knowing this, I felt more comfortable ( less guilty) for doing what I needed or not doing what he wanted to maintain my energy in order to continue to care for him. I knew I had to do this for both of our sakes.

Ken, I saw the same changes in my husband but it was for a couple of years before his respiratory failure/ ALS . Previously, his mind never stopped, reading, chess , puzzles, etc. Then it changed to only reading books he had already read, even only watching programs he had already seen, and not wanting to do much of anything. He was not someone to express how he was feeling so my best guess is he did not have the cognitive or physical energy for anything new or demanding. In his case, his breathing did not provide the oxygen he needed to do these things and his CO2 was building making him sleepy and lethargic. Because we came into this backwards, I don't know if what your wife is expierencing is respiritory based or common in a more typical progression.

Kate
 

vltsra

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Dear Pinky, thanks for this thread. My PALS is not on a respirator but is a slow progressor. There are times when, truth be told, I envy the CALS of fast progressors. He was diagnosed 4 years ago and I'm told I have a decade or decades of caregiving ahead. Thankfully for now he is very kind and understanding of my needs. We are paying out of pocket for a caregiver and while sometimes he complains she doesn't do much (like Sharon's nurse) but I have repeatedly told him that if she is not here I cannot go out on a bike ride. He is on bipap, lately most of the time, and I don't know if he will choose to be vented or not. He has been refusing to discuss this or to do an advanced directive as he just cannot face it. Sometimes though he tells the caregiver things that he doesn't tell me, so I suppose it is good to have a third party who is neutral.

I don't know if the PALS are experiencing some FTD which affects their ability to empathize, or if it is just a matter of being trapped within their own bodies and turning inward. I try to be thankful for every day but really this is so hard and so unfair. As far as finances can you talk to an attorney or financial planner about options? This was on my to do list for this year as well. I guess there is a Medicaid spousal impoverishment provision but honestly it is peanuts in comparison with the cost of ALS.

Wish I could reach out and give you a hug.

V
 
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