Hospice on a Vent?

[alsventer]

My Mom has been on a vent for 25yrs. Dad was her Primary Caretaker but is now incapacitated himself in a nursing home and will never be able to take care of her again.

She has some LPN care and my sister & I do the rest. We both work & have families and have been running ourselves into the ground for the last year. We are neglecting our own families, suffering from stress related illnesses, and we just cannot go on like we are now. We have tried to find help but have had no success.

My question is...now that Dad is not in the picture can she be taken to a Hospice? We have researched the nursing home issue and the closest one is across the state. Do ALS patients ever go to Hospice with vents?

Mom is in her early seventies and has said that if Dad goes she's not far behind. She is healthy and it seems she could go on & on. Do ALS vent patients have advance directives? What if she wants to go....can she? Is that suicide? We don't want our Mom to die but her life was all about Dad and now he's not here. She has had a good life all these years but it's just not the same now.

[Sanders915]

25 years, I am so shocked about that. Oh my gosh

[CindyM]

Hi there. Did you really mean 25 years? That has to be some kind of record! :smile:

Anyway I am glad you found us. There are quite a few CALS around here who are in a tight spot between their own families and aging parents. Having 2 needy parents must be hard...Cordially, Cindy

[alsventer]

25 years, I am so shocked about that. Oh my gosh

She was diagnosed at Duke in 1983. Few years later she had a G-Tube and trach put in. Since then she has been around to see her grandkids born and grow up. The oldest is in college now.

Mom & Dad celebrated their 50th anniv in April 07. Less than two months later he was in the hospital being diagnosed with lung and brain cancer. After having a tumor removed he came down with bacterial meningitis which has left him in a damaged state unable to talk much or walk. He has no short term memory and can barely put two & two together but his vitals seem OK.

Drs have suggested that long term stress could have contributed to his neuro endocrine cancer.

[alsventer]

Mom & Dad made the choice to do the vent. It was the right choice for them.

Dad devoted his life to taking care of Mom. We are a close family and we all love Mom but do we devote the rest of our lives to taking care of Mom at the expense of our own and our families?

We have children that need our attention but after our 40+ hour jobs we go to Mom's to relieve the nurses. We take turns spending the night with Mom which means getting up every 45 minutes to suction her. Evenings are spent at Moms. Weekends are spent at Mom's. Holidays are ALWAYS spent with Mom b/c the nurses have time off. It is about to drive us insane.

When I think that we can't do this and I look at our options I begin to feel guilty. Mom has been a fighter for so long she has no intention of leaving her home. I just don't know what to do.

[CindyM]

I don't think there are any easy answers, unfortunately. Nobody talks about this much, but our kids need us, and they will only be young for a short time. And our parents need us, and they will not be around forever. Maybe the answer is to take a holiday off now and then? IDK...

[hearts_and_thoughts]

I didn't see that anyone answered your question about Hospice and a vent. I asked Hospice last night if they take care of patients with a trach and they told me no. I don't know if Hospices are different per company or per state, but mine told me that Hospice is for those not taking any "heroic" measures to save their lives. It is for those terminally ill patients who are letting go. I hope this helps.

As for your situation...wow, God Bless you, your Dad, and your sis for doing what you have done already...wow! I get amazed at the people on this forum, like you. Please don't feel guilty, for you are a saint for what you have already done. Whatever you decide, please know that!

A short term CALS,

Mary Jo