torn

[teresa]

my mother has been in the icu for almost two weeks now. it has been hard communicating with her as she had the respirator for the first few days, they tried the bipap a couple of days ago and it was not sufficient. she's now back on the respirator(tube down her throat).
she did not want a trach. she made it very clear to me a few months back. she cannot move. she can barely lift anything with her hands. prior to the icu, her voice was already weakening.
i am selfish, i want my mother to be here but i respect the decisions she makes as this is her life. she wants to live, but without all this [email protected]! she wants to walk, she wants to dance, she wants to live as she did. she wants to see and be here for her grandkids but she is tired of all the suffering and pain. my mother has always been an extremely kind-hearted, strong, lively and fun person. it rips my heart violently when i see her suffering and in pain, she wants to live yet she wants to give up.
here and there i still see her eyes light up, i just want to switch places with her.. let me go, not her. she makes everyone around her smile, she is irreplaceable and unforgettable.. unlike me(am a wallflower and will always be)


my sis has convinced her to do the trach, how will her quality of life be? is it our selfishness that will be the cause of her enduring more pain and complete loss of independence? does anyone have experience in situations like this? what if after the trach, she completely loses the ability to talk? her voice was already weak prior to this... she loves to talk, will she not go into a deep depression due to the possibility of this? she cannot write or type....
i am beyond happy that she has agreed but was it fair to her to make that decision to appease our selfishness of wanting her here with us. that is the feeling that i have when i look into her eyes. she will go through with the trach for us, but her heart wants to fly....
someone please help me sort through this..

 

[jcarnahan]

My FIL went with the trach because he was not ready to give in. He could not talk but we used letter boards to communicate. We have many precious memories from this time.

My BIL refused a trach and of course subcummed sooner. But that was his choice and we respected it.

The trach took some care. We had my FIL at home and learned how to do all the maintence. We were glad to do it.

Her mind is clear (unless something else is affecting it) so my suggestion would be to allow it to be her choice.

 

[CindyM]

First, Teresa, please stop beating yourself up over all this. There really is no right or wrong way to make this decision. Look at it from your Mom's point of view: she wants to make you all happy, like she was always able to do before, and she wants relief. No matter what she decides, there is both an upside and a down side to her decision.

You might take comfort from reading some posts by Quadbliss. He found a greater quality fo life after the trach, and your Mom may, too.

she is irreplaceable and unforgettable

And so are you, Teresa. Your Mom can't say this to you today so I will say it for her! :smile: She knows how much you are doing for her, and she appreciates it, believe me! Cindy

 

[Al]

joelc, a member here has a trach and vent. Look up some of his posts. He is happy. Go to the People with ALS Forum and see the thread called Sensitive Question. ventilator or no vent. It may help you.


AL.

 

[joelc]

Hi Teresa,

Al has glven you directions to a thread where I have explained my experience with getting a tracheostomy and vent. I would further like to extend my help and if you are open to a phone call from me I would be happy to call you to further explain my positive experience and fill in some blanks. Since you are relatively new here I don't know if you can send me a personal message with your phone number, if not you can give Al permission to give it to me and I will call you.
I also would like to make the same offer to anyone else and I will call and you can ask me anything.

Joel

 

[teresa]

thank you so much for all your thoughts and support... my moms been on the trach for a few days now, there wasn't any complications. the only thing that seems to be bothering her physically right now is her tailbone (just skin and bones now). she's in the respiratory ward on an air mattress. she's also using a flexible ring pillow which seems to be working.
the doctors would like to see her eventually try being off the ventilator for a short period in hopes that she can talk. she is understandably scared as there were a few incidents that made her feel like she had a bag over her head. she doesn't have the confidence to try right now.
we've been struggling a bit trying to read her lips. that frustrates her a lot. i don't think we can think of other options until we know for sure she can't be of the ventilator. she doesn't have the option of writing or typing... needless to say there has been any in depth conversations so far. my mother smiles alot so we won't be bringing it up. it will be up to her when and if she wants to discuss it.
everyone is doing much better, one baby step at a time.

 

[joelc]

I am glad she is doing okay.
I am a bit confused - do you know why they say she has to be off the vent in order to talk?
I talk all the time and remain on the vent.

 

[teresa]

hi, i'm still a bit confused myself. they did say that 3/4 of her lungs are healthy.. she's been able to be off the vent for approx. 15 mins here and there. they mentioned something about switching her to a different trache model in a month or so.
could you please let me know how your speech process was?
my mom resides in hong kong. i was there for 2 months, i got back to the toronto a few days ago. i feel i should still be there until she's comfortably at home but my hubby and two kids need me here.

 

[katekath]

Hi teresa,

You might like to purchase a seat cushion with coccyx cut-out for your mum regarding that tailbone problem. I bought a Jobri Sacro Wedge Plus A1002 for my mum recently and she said it is more comfortable to seat or rest with it. That should provide relief for the pressure on her tailbone.

If she has bed sores, you might also like to purchase 3M Cavilon Barrier Spray and Sanyrene oil to apply for her. There is also the 3M Cavilon Barrier Cream, but I was told the spray works better than the cream. Apply the spray before the oil. The spray will help to "fix" the sore area, while the oil will protect and promote healing. I was told not to spray the Cavilon Barrier Spray directly onto areas with open wounds.

Regarding the change in trache model, did they mention whether they are changing to a different diameter size or material? I was told to ask about that whenever the medical staff changes the trach.

Perhaps you can try an alphabet board or word cards for communication for the time-being. It will take a long time to finish a sentence, but it works most of the time for my mum.

Hope these helps.

 

[joelc]

teresa, regarding my trache and talking; I got my tracheostomy at 3:00 PM and before 10:00 AM the next morning they deflated the cuff and I was able to talk. Several days later they replaced the tube with a cuffless one and I have been talking every since.