Mom is scheduled to go off of vent to pass away

[lqmom]

My mom is scheduled to go off of her vent and pass on 6/27. She had an emergency tracheostomy and became vent dependent 2.5 years ago.

There is so much more to it, but I'm wondering if anyone on here is even available to offer advice before I do. I don't know what to expect and am feeling so much stress & anxiety.

Thank you,

Lisa

 

[scaredwifetx]

I am so sorry Lisa and know is a very tough time. Losing her will hurt but it will also mean she is no longer suffering. I am sure it 2ill be a peaceful passing for her. Take this time to share, love and hugs your mom. My thoughts are with you

 

[skipper66]

I am so sorry to hear this Lisa. My dad didn't have a vent so I'm not sure how that goes. He passed away Nov 21st. He never lost his voice, no bi-pap, could eat most anything, and talk until the last 24 hrs of his life and then he went down rapidly. His ALS was limb onset. My dad had Hospice for less then 24 hrs. They used Ativan and Morphine at the end to keep him comfortable. It took awhile to get the medicine to kick in but once it did he pretty much slept away. I don't know if your religious or not but I held my dad's hand and recited prayers during his final hours at his bedside. This is going to be the hardest thing you will ever go through I assure you. I lost my mother to colon cancer 19 years ago this coming July. I held her hand as well when she passed away. Nothing can prepare you for this. But, you will get some peace knowing that you are doing the right thing and they will no longer be suffering. You might play some peaceful background music during the final hours to help relax her. Also, remember that the last thing to go is their hearing. So, make sure you stay calm in earshot of your mom. You got to have her convinced that you are ok. Even though you and I both know were not going through this. I wish I knew some words of comfort for you. I'm sending you a huge hug. If you believe in a higher power. Please cry out to him. He will carry you through this. Love, Kim

 

[Atsugi]

My wife's passing was very peaceful. No pain, no discomfort, no fear. She took her last breath in our living room, lying in her hospital bed with fresh linens and nice bedclothes. She was surrounded by family. It was about 8:30 at night.

Then I called the funeral home to pick her up and we called the Mayo Brain Donation hotline so they could coordinate. We did not call 911. All went well.

A technical point: Here is something to understand about morphine if you already don't know this.

Morphine is very good at easing the discomfort of air hunger. If she needs more, give more. If anyone were to say, "Don't. That's a fatal dose," they are uninformed. You may always use whatever dose is needed to provide for the comfort of the patient, even past the "fatal" level.

 

[lgelb]

Lisa, feel free to share anything here, before or after. Just a technical point -- if she is not under hospice care and dies at home, you will need to dial 911 in most jurisdictions so that law enforcement/the medical examiner can release her body for any combination of donation, cremation, burial. To that end, it is good to have her advance directive and health care power of attorney at hand. If she is utilizing a hospice agency, you will not, as Mike points out, need to take that step.

We can be more helpful if you can tell us what the plan is for 6/27 -- who is doing what. But overall, if the proper steps are taken, she should pass in peace.

Best,
Laurie

 

[lqmom]

I am so very grateful for your responses. I had actually first written a post with more detail about our situation, then an auto - refresh took place and I figured before starting from scratch again let's see who may be able to relate before starting over.

My mom was first diagnosed with bulbar palsy almost 5 years ago. Two and a half years ago with no DNR and in respiratory distress a tracheostomy and vent had to be decided stat. She had gone back and forth a lot.

Last Mother's Day 2015 my mom announced that she wanted to be removed from her vent and pass away, but she changed her mind within a few days. That same decision was expressed by her a few times over the past year.

This time she is adamant about 6/27 and has been a part of the funeral decisions etc. I have been in contact with her neurologist who is an angel who advocates for MND patients and is nationally recognized as such out of Philadelphia. She is the only physician that I am aware of in our area who can legally perform the withdrawal.

I'm afraid of losing this post again but I will add that another distressing part of all of this is that my sons, 12 & 16 years old who are very close with my mom are in the midst of spending 2 weeks in North Carolina with their father, a US Marine, before he is deployed to Afghanistan. I am flying round trip from Pennsylvania to bring them home on the 23rd. While they are aware that their Grammy is on hospice and she can choose to withdraw from her vent and pass, they have no clue that this will happen within days of their return to Pennsylvania.

Thanks again for all of your replies,

Lisa

 

[lqmom]

Ok, I should add that the social workers from hospice, one of which was a military chaplain, advised me to not tell my boys about my mom's "date" since we have had family hospice counseling and felt it very important for my sons to not have the anxiety about their Grammy hanging over them while trying to enjoy their time with their father until they see him again until probably next spring.

 

[Barbie]

Hard on everyone Knowing the date of death in advance...that is why we don't have expiration dates stamped on the soles of our feet.

hard on you to keep a secret like that from grown sons. I dunno, you know your family but I don't like keeping it secret from teens, after then get home from their trip. I would let them enjoy time with their dad but perhaps tell him so he can be aware. As she has changed her mind before you might just mention it to them that she is considering it again when you pick them up. she may change her mind again as it is a frightening decision to make.

 

[pittsburghgal]

Lisa, I am so sorry you are dealing with such a very stressful situation. Your mother will finally be free and I think focusing on this is most important. Hold her and tell her how much you love her.

Sharon

 

[Atsugi]

At this time of passing, the workload suddenly jumps exponentially (if you choose to accept it) because a bunch of stuff needs to be done before the funeral.

I wrote an obituary suitable for newspapers. Both here and her parents towns. With photo.
A eulogy to be delivered at the memorial.
Select a favorite prayer, psalm or saying.
The funeral home or church might want a selection of photos.
Notifications: family, friends, email list, address book, Social Security, insurance company.
Pay and shut off the monthly bills. Redirect the mail.
Buy death certificates, with and without the cause of death. Maybe 6 of each.
Rummage through the drawers to find accounts and investments.

Didn't we make a list of this stuff awhile back?

 

[poppies]

Hi Lisa, it probably feels really surreal to be in the situation you are in. While it must be so incredibly difficult to be facing the passing of your mother, you are fortunate in that you can plan everything beautifully. My husband, Iven, had Bulbar Palsy ALS for four years (just under three from diagnosis). He passed away on the 16th of January this year. One of the things that I still struggle with sometimes is that I wish I had known it would happen that day because it was so unexpected that there was no time to plan anything special. We were blessed to have an hour and a half to talk to him and love him as his breathing slowed and eventually stopped. He knew what was happening and an incredible peace came over him. You can plan everything down to the last detail which will be comforting for your Mom and for you and the boys. Remember that the boys will take your lead, so think about how you can share with them so that, while they will be sad, they need not be frightened - when they come back from holiday and have had some time to tell you all about their wonderful time with their dad, you can take them to a quiet place and explain that it is time for your Mom to be at peace. You could explain to them that you were all blessed to have her in your lives as long as you have but that it is now time for her to go to rest surrounded by your love. Thinking of you and wishing you all much peace and love.