Coping, Just about.

[pojepo]

Hi,

I am new to this forum.

My Husband Steve has ALS, diagnosed 1/02/2015. Steve had a trach and feeding tube fitted in May. Just about feeling like I am getting my head around it over the last few months. The care involved is incredibly time-consuming and tiring. I feel trapped at times, feel like I am walking in someone else's shoes most of the time, I am surprised by how demanding he is, but just do as he asks. Feet moving, head moving, shoulders moving, fingers moving, it reminds of the "Princess and the Pea" story from my childhood. I called him a spoilt brat this morning, and now feel terrible for saying it.

I had woken at 7 am, got myself dressed, done suction and cough assist, crushed and given him his meds with 2 glasses of water, unloaded the dishwasher while I cooked him a full breakfast, cough assist and suction again, fed him his breakfast, cleared up after breakfast, cough assist and suction again, got him up on the commode while he does his bathroom stuff, washed his hair and shaved him while on the commode, stripped the bed while he is out of it, remade it, cleaned up from the commode, got him back on the bed and ready for the CNA to come in (Steve won't have her do any of the bathroom stuff, and I understand that its a dignity thing) Cough assist and suction again. I am just about to go into the bathroom to get myself washed he asks me to search for a show on net flix. My response is mmmmmmmm no I am trying to get ready (I work from home) it's 8:55 am, I start work at 9 am. Spent the next 20 mins looking for a show he wants on Netflix, I got so mad at him and said: "you could wait you know while I do something for me for once, you're acting like a spoilt brat all the time at the minute, stop demanding so much extra all the ****** time." Now Steve cannot talk, so all this is done through lip-reading.

I am sorry to vent, but I just want to know if this is only me, or is this how others feel. I feel like I go above and beyond all the time, 24/7 but then when we argue, well when I shout, I am then riddled with guilt. He cannot wait 5 seconds for anything anymore, yet I have put everything in my life away and put him first 24/7 (apart from work, but without that, no insurance or money). I love him so much, and hate this disease and what it is doing to him, but wow this is taking its toll on me and my patience, he says I am not patient enough with him, but I honestly don't think I could be any more patient.

Even writing this today, has taken me hours, stopping to adjust things for him, or a cough assist and suction ( I know this will never go away, its part of the trach care). Sorry just feeling crap today.

Pauline

 

[Nuts]

Welcome, Pauline. Honey, you are not alone. My guy is not trached, but sometimes I feel the same way. I've told him a few times that I need a few moments for myself--and I was pretty snarky--and I am riddled with guilt. After an episode like that I try to think of how it must be for him, to be trapped in a body that won't work, waiting for someone else to respond every time he wants anything at all. It sucks.

I will say that he needs to give you a break with the bathroom stuff. If you have an aid who is professional, he will likely get over his embarrassment quickly. My guy told me that I couldn't be in the room the first time an aid showered him--it would be too weird. Now there have been up to three of us at the same time, with him stark naked, and he talks and cracks jokes the whole time. I am astonished at this--I would never have expected it. This monster is hard on everyone, but the break I get 5 days a week by having someone else do the showering/dressing/cleaning up after routine is huge. Weekends we take our time and I get in the shower with him, but Monday through Friday that's my time to take a walk or do something else for me.

Vent away--it does help. We all love our Pals (why does this happen to the very best people?), and the cruelest thing this disease does is get in the way of our relationships. It helps to share. It also helps to hear from the PALS in this group--they keep me grounded by saying things that perhaps my husband won't say.

I hope your day gets better.

Becky

 

[pojepo]

Ahh, thanks, Becky. Yes, Steve got over the shower embarrasment quickly too over a year ago now. I just do the bathroom and hair wash each morning now and get him ready for the CNA. Yes, them coming in for 2 hours M-F is a blessing, but now he is trached I cant leave him, as they cannot touch the trach care. They do a bed bath now, dress, and do his range of motion, we do the same at weekends, just take our time.

Just a rough day

 

[Narrowminded]

Pauline - Brian has been trached and vented for 7 years. Trust me, you are far from alone in your thoughts. Then I have to remind myself, why is he spoiled and who spoiled him? Me of course. I have the same issues and the netflix thing. However, instead of doing what we would do with our kids, make them wait 5 min, we don't. We just do it anyway. I get just as frustrated.

Does Steve have a Tobii or the like? Brian has an Accent, same thing just different company. In most ways its been a God send. He can tell me what he needs, he can get onto Netflix himself, email, youtube etc. However, the caveat is that he will get onto Netflix. I will check on him and he needs something, did he write it out? Nope, he's too busy watching his show, then we go through 20 questions to figure it out. That gets really frustrating since we got the device to help him communicate and i'm still playing 20 questions. I keep tellling him I haven't past eye reading 101 yet. He can no longer form words with his mouth so no lip reading here.

You are very lucky an agency there will send an aide to help with a bath, even though he's trached. The agencies here won't let an aide near a trached patient. I have to have a skilled nurse.

Hugs,

Sue