VSED Advice Please

Lonnie

New member
Joined
Jul 18, 2019
Messages
2
Reason
PALS
Diagnosis
01/2019
Country
US
State
OR
My husband and I decided that I will VSED at home. We know I will need care in addition to what Hospice provides. The home care services are asking how many hours we will need them and for how long, but we don't know enough about the process to say. My husband is willing and will be here full time, but he's not a nurse and I don't want to burden him with too much. Can anyone guess at what point after I begin VSED we will need outside help and for how many hours a day?
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
16
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
Hi Lonnie,

My heart goes out to you now. VSED is a part of a natural death. Being a Hospice nurse I have seen some people live for weeks without food 7-14 days without water. During the dying process each body responds in its own way metabolism slows way down. You may sleep more and will be semi conscious at the end hearing is the last thing to go. During this process when you are actively dying it is best to have someone available to watch you 24/7. Your Hospice program will have a team that surrounds you. A nurse your case manger will set a schedule to your needs. Unfortunately Medicare does not deem actively dying a continuous care need. So once your actively dying nurse visits will be daily I imagine and you will have a home health aide to bath you several times a week. Nurse visits are usually 30 min to 1 hour aide visits the same. If your Hospice program has volunteer services they may be able to provide company ( not care) several hours a week. You team will have a social worker, MD, and Chaplin. I would advise plan for someone to be with you 24 hours you may need medication, turning etc. If your husband can cover the night someone to be with you during the day. One part of the Medicare Hospice benefit is respite 5 days every 30 days. You may not have all that time but it can help if you need 24/hr care in an inpatient unit or nursing facility to provide caregiver relief. Also ask the Hospice you are with if they have a caregiver list, people that know how to care for the dying most are bonded and have referrals. They can be much more affordable then some home care companies

I hope your journey is peaceful
 

Lonnie

New member
Joined
Jul 18, 2019
Messages
2
Reason
PALS
Diagnosis
01/2019
Country
US
State
OR
Thank you so very much for such a thorough and speedy reply. A home care representative is coming this morning to offer their services. We now know what questions to ask.
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
16
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
I’m glad that helped my dear. I hope the representative helped. I’ll keep you in my thoughts.
Marie
 

harrim4

New member
Joined
Nov 17, 2018
Messages
2
Reason
PALS
Diagnosis
01/2019
Country
US
State
Washington
Thank you so much Marie and Lonnie. I am considering the same experience and both of your postings have helped me so much.
Michelle
 

lgelb

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Nov 5, 2009
Messages
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Lost a loved one
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09/2009
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WA
Some of us who assisted our PALS in self-directed death, whether via VSED, medication such as morphine, and/or BiPAP discontinuation, whether with or without hospice assistance, have posted about those experiences here, generally in the Caregiver threads. Don't forget the search link at the top right of each page.

The General Discussion sub-forum is probably the best place for PALS questions about any of these, since we try to give CALS and PALS their own spaces otherwise.

Decreased eating and drinking often occurs naturally at the end of life in ALS, but it is not necessary to rely on VSED as the sole means of ending life, and there is no benefit in doing so,

Best,
Laurie
 
Last edited:

SpeedyMarie

Member
Joined
May 24, 2019
Messages
16
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
Hello Michelle and Laurie.

I agree with Laurie. Please understand Michelle this is a hard journey and there is a gift in each day. To get a Hospice referral you have to be deemed 6 months or less to die. Most of the time it is mentioned late in that time period sadly.The decrease in drink and food is a part of dying from ALS to most disease processes.

It is a personal choice for VSED but life is valuable. Take the time to consider it and I wish you peace Michelle.
 

Lkaibel

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Very helpful member
Joined
May 9, 2016
Messages
1,333
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Lost a loved one
Diagnosis
06/2016
Country
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MN
This thread was started some weeks ago, but if you or anyone desires I’d be happy to share our experience.
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
55
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Thank you so very much for such a thorough and speedy reply. A home care representative is coming this morning to offer their services. We now know what questions to ask.
I know I don't 'know you' Lonnie. I love your strength, and I love your heart. I wanted you to know that. Until we meet.
 
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