Old 03-12-2008, 02:32 PM #1 (permalink)
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Default Hospice on a Vent?

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.
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Old 03-12-2008, 03:02 PM #2 (permalink)
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25 years, I am so shocked about that. Oh my gosh
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Old 03-12-2008, 03:11 PM #3 (permalink)
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Hi there. Did you really mean 25 years? That has to be some kind of record!

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
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Old 03-12-2008, 04:07 PM #4 (permalink)
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Originally Posted by Sanders915 View Post
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.
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Old 03-12-2008, 04:19 PM #5 (permalink)
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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.
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Old 03-14-2008, 11:33 PM #6 (permalink)
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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...

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Old 03-15-2008, 10:53 PM #7 (permalink)
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Default hospice told me no

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
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Old 04-15-2009, 11:29 AM #8 (permalink)
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I posted this thread over a year ago. Mom is still plugging along. She is having all sorts of health issues and is 75. We have been tossing around the idea of placing her in a nursing home for over a year now. She's on a waiting list but is still fighting us on this.

My sister & I are feeling the effects of being longterm caretakers. Stress, depression, physical ailments, weight loss, weight gain, relationship problems, etc. A new development in our lives is that my unmarried sister (in her early 40's) is pregnant with her first and probably only child. It wasn't really a planned thing but everyone is happy about it. The thought of her having to take care of Mom AND herself & the baby is weighing heavy on us.

Mom has been a survivor for so long she has a hard time thinking of what's best for others around her. She was initially pleased with the news about the baby but has not mentioned it after that and when people ask her how she feels she cries because she knows my sister will not have as much time for her.

As time goes on it's tough not to feel resentment on what we as caretakers have missed out on even when my Dad was the primary caretaker. I see what HE missed out on too. He would never say anything negative about Mom and my sister & I probably sound like whiners but it is VERY difficult to take care of someone 24/7 who needs to be attended every single minute of everyday. Even with help..having to schedule people around the clock and deal with the gaps is difficult.

Anyone else feeling this way? It's good to be able to lay it all out there to people who can either understand or are in a similar situation. We are having lots of guilt for the feelings of frustration. It's hard to express and the avg person just cannot relate to our situation. They all know it's hard on us but they think we are angels and we are certainly not! Mom is having a bit of mental issues that I think cause her to seem selfish and uncaring.

Thanks for listening.
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Old 04-20-2009, 10:49 PM #9 (permalink)
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First, I admire you for hanging in there for so long. I am almost giving up after some months with my mum at home and with a crazy father.

My mum is refusing to go to a nursing home too, even though my sister and I are totally stressed out, physically, mentally and financially. If my father does not have mental issues and is not verbally abusive, then it might be different. However he is and no helper I hired for the past few months can tolerate his nonsense. Now our current helper is leaving by May and I am at a loss of what to do since I am so bogged down by work to look for a new one. My father is totally useless in helping anything and refusing to accept that he is responsible for all the helpers leaving us, saying they are the ones, who are crazy.

I am so drained mentally and financially. I can't get work done at home when I have to, can't have a root canal done due to money problems, can't rest or sleep at home due to a crazy, selfish father and is facing the loss of the job any time. Everyone treats me like a first aid kit, coming to me only when they have problems that need to be solved and running away when I need someone to talk to.

My sister tries to help, but her inability to deal with certain issues means I have to deal with almost every issue. So yeah, even with help, it is still extremely difficult.

I am starting to resent my mother for refusing to see the problems, esp with my mental father, who can be nice one minute and throwing things around the house the next minute with no provocation.

She was never there for me since young due to her indifference and nonchalance, and suddenly I have to be there 24/7 for her. It is like a shock to my entire system. I was planning on continuing my studies and now I can't. I feel like my dreams are all shattered.

I guess the latest issue of not being able to get a root canal done, did it in for me. I cannot even provide for my own health because of her medical costs. Sigh. It's frustrating. I cannot imagine not having my sister to go out and work to help with the money, if we cannot find a helper because of my crazy father.

Even so, I know I still have to care for her because she is my mother.

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Old 04-20-2009, 11:23 PM #10 (permalink)
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I am so sorry to hear of the challenges you are having!
I cannot imagine having to deal with what you are going through!

I wish there was something more we could do for you. Please try to find some time for yourself and know you have friends here that you can vent to whenever you want!
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Old 04-21-2009, 12:38 AM #11 (permalink)
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Dear ALSventer and Katekath,

My mum is not that bad yet, but I already have a lot of the issues you both have, and am worried that my life will become exactly like yours - I have three kids under 4, and have not had much motherly help from mum over many years - it has always been like I'm the mum and she's the kid! And now she is sick, my brother and I are running to her everytime she texts be it at 11pm at night... my brother is getting stressed with work as they are trying to get rid of staff in his section and he and girlfriend bought a house just last year. My husband runs our family business and does what he can, but alot of the time he gets home and I'm either stressed over messages mum has sent or I have to run off and do things for her. I have tried to organise services, but she doesn't want them as she thinks my brother and I can do it all....In other words, no you are not alone in the struggle to help your relatives. At times it is great just to vent and release the stress, but I understand it then starts all up again.
Best wishes for all who are dealing with this disease
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Old 04-28-2009, 12:24 PM #12 (permalink)
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Oh my goodness. After my venting post on April 15th....TWO days later on April 17th Mom passed away in her sleep. She has been declining a bit in the last year but it still was sudden.

I found notes my Dad kept over the years.
Oct 1979-slight speech defect noticed
Nov 1982-some muscle atrophy in hands and forearms
Jan 1983-Diagnosed
Jan 1985-After ER trip & ICU decided to do Trach & Gastrostomy
Feb 1985-Went home on vent (Dr said 6 months or more)

ALS is very hard on the caregivers. The LPN's/CNA's that helped us had to deal with the grief too. Some were with Mom about 10 years...came to her house every day. It was their job but their second home too.

Reading KateKath's & others posts...it's very similar to my own situation.

Mom's death brings lots of emotions...sadness and relief are the two biggest. Take care of yourselves and God bless!
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Old 04-28-2009, 12:45 PM #13 (permalink)
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Default Hospice and Vent

In Alabama Hospice will not take a person on a vent because it is a Life support. The Nursing homes want take them here either. In September when Tim was in the hospital, the doctor was threatening to send Tim to Louisianna, the nearest place to take a Vent and Trach. That is when I was having problems getting my family on board to get trained.

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Old 05-10-2009, 03:38 PM #14 (permalink)
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Default ALS Venter

Please get in touch with me. I may be able to help.

Stu H) 949-488-9894 C ) 949-233-3045 Email) Angels4ALS@aol.com
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Old 05-18-2009, 12:31 PM #15 (permalink)
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It's probably a dumb question but in what situation would a person need a trach? I guess they can't breath and that is why they are getting one. Can a person with ALS choose not to get one if they should stop breathing or if they start choking and can't get their breath? I realize an advanced directive or living will needs to be filled out and signed but if the patient starts to choke and then can't breath, what would one do if they have decided not to get one (trach)? Esp the caregiver, because it probably would be very traumatic.
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