Just need to vent

[CAHPAH]

Yesterday Serena could not finish her shower. She had to stop and spend time on her bipap. This was not a moment like we have had in the past where she simply needed it for comfort. This time she needed it for survival. In the short time it took me to get her hooked back up she was amost in a panic. She honestly could not breath and she said her head hurt very bad. Once she was hooked and was getting air, I saw the panic leave her eyes only to be replace with sorrow. We'd reached other threshold, yet another reminder of the eventual out come. I hate seeing these things in the eyes of my love. I hate ALS.

George Elliot wrote, "That quiet mutual gaze of a trusting husband and wife is like the first moment of rest or refuge from a great weariness or a great danger--not to be interfered with by speech or action which would distract the sensations from the fresh enjoyment of repose"

I totally understand what Elliot is saying. It is what I think I will miss the most when I no longer have Serena here with me. That special look we share that says so much in an instant and just for those brief moments we hold each others gaze everything is good. No matter what the realities of our situation, just then while we look into each others souls, there is perfect peace, the fresh enjoyment of repose. It is also what I fear the most. One day I will look into those eyes and they will be empty. Not even a sign of recongition let alone the understanding, admiration, affirmation, love that I see in them during those brief moments. That scares me. I dread it above all else. I hate ALS.

Just venting. I know you'll understand

 

[LornaDoone]

My heart goes out to you guys. Such an emotional story. Beautiful about the love yuo share. Terrifying about how scary the situation was. Were you calm? Frantic about getting her hooked up?

 

[joelc]

As one who is far past that condition I sympathize with what you are going through. It is an unsettling time. I have zero independent breathing time so I am showered while on my ventilator. It is also very possible to shower her while she is on her bipap. It is an adjustment that no one wants to make but once you get used to it it is not a big deal.

 

[tomby]

so sorry Jim-

 

[abbas child]

Dear Jim, please give Serena my love. The two of you are so precious.
Ann

 

[mare]

Jim-
I do understand that dreaded fear...
My prayers are with you both.

 

[Judith]

Jim, I don't know what to say, but the love you two share can never be taken away. Best love to you and Serena.

Judy

 

[joni51]

So sorry about this, all we can do is the best we can do if that makes sense... Take care

 

[chriss]

Hi Joel,

Can you explain how to do the shower with the bipap, seriously, not being funny. We are aware that the machine absolutely cannot get wet so cant be in the close proximity of the water. He cant take the mask of except for seconds only (varies depending) and if we extended the hose length the pressure would be affected I would think? And then if I have to transport him to the shower in the shower chair how to take the bipap and the battery and push his chair? I had asked for help from health care workers at the start but it becomes everyone elses problem and then the stupid carers we get can't even work an electric razor.

Thanks

Chris

 

[laurel]

Hi Chris. My hubby uses the CPAP and has done for years. He has always used two long hoses connected as he tosses and turns like crazy at night and found one hose wasn't workable for him. For sure extending the hoses will decrease the effectiveness, but for the length of time to shower two hoses joined should work okay. For hubby the CPAP technician just figured in the hose changes into the settings. I do it is workable with extensions of hosing, just check with the technician.
Laurel

 

[joelc]

Hi Chris, what we do is:
We have 2 people for showers.
After I am put in the shower chair directly from bed, one person pushes me in to the shower and the other person carries my vent. (the vent's internal battery lasts about 10 hours)
If you are doing it yourself, we used to do it with one person, set the vent (in your case the bipap) on his lap for the trip into the shower.
Once in the shower we transfer the vent to a chair that is close to me.
We use a flexible shower head with a long hose on it so the water does not spray all over the place and the vent stays dry.

If you look through these pictures you can see our setup: Bed Bathroom

We have a 7‘ by 7‘ shower so there is lots of room. I don't know how big yours is so you might have other challenges.

If you have additional questions please ask.

 

[chriss]

Hi Laurel and Joel

Many thanks for your replies. Unfortunately we don't have much carer help, although we are adequately funded. I have three or four days at a time without anyone, just can't get them to turn up. One of the carers who does actually turn up (once per fortnight) says he is her hardest client and I think that is rich since the hardest thing she might do on a shift is get him out of bed with the sling or take the mask off and put it on. No, sorry, the other day I asked her to wash his neck and give him a shave with the electric razor. Almost did her in. They seem to find it hard to deal with the masks. The agencies send in people who on other jobs take little old ladies to the hairdresser etc. So when they get confronted with the masks, the machines the sling and him struggling for a breath, they cant handle it. I pretty much do all his personal care, which I don't mind but I would like at least one other person to be competent just in case I get sick or something.

The Bipap has an external (very heavy) battery plus an inverter which could not stay on his lap and hard to explain but the machine would not fit there either. He weighs now about 279 pounds and most of his weight is around the stomach plus he is really hunched over when he does sit up. Would maybe be able to do something if the biap came with an internal battery as perhaps could put it in a bag and hang it on the chair? We do have the flexible shower hose and one very unused and expensive shower chair and a full disabled bathroom off the bedroom so most of the elements are there.
Connecting the hose sounds a good idea but will try at first sitting at the side of the bed.


Again thanks Joel and Laurel for taking the time to give me your advice. That is one of the best things about this forum is being able to get useful advice and support.

Chris

 

[GRM2008]

i don't know if this website is worldwide, but i used a site called Sittercity.com to find local caregivers....we had a really good one, and some other potential prospects that we didn't need to use, but it might help. They work privately, but you get the chance to read about their skills and experience, and then interview and make a decision.......if not that site, then perhaps there's another site like it? It's kind of like on-line dating but for caregivers and careseekers! good luck.

 

[TedH5]

Jim sorry that your wife had this episode. I loved what you wrote in regards to the George Elliott quote. How true. Your love for each other is very evident! Thanks for sharing the quote and best of luck to you and your wife.

 

[Madison1943]

I just found out from my hospice nurse that I can get an aide from hospice to come for 2 hours 3 days a week for free. I've been paying my own aide over 100 dollars a week for exactly the same hours. Now all I have to do is let her go, which is harder than hell for me. I don't want to do it, but duh! the aide will do laundry, light housekeeping, personal care, etc. I will have a petsitter in addition. This is good news.
Carol