Taking ativan says he feels worse?

Status
Not open for further replies.

AngelManFL

Active member
Joined
Sep 30, 2007
Messages
98
Diagnosis
11/2007
Country
US
State
FL
City
Tampa Bay Area
Gina - just also wanted to let you know I was still thinking of you and praying for your strength.... :oops:
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Don! I pray to God you are doing a little better. Hey, let me tell you about this restaurant here in Houston, called The Red Onion, it serves mostly South American, not Mexican, but SA and Carribean food. They have the best, I love their food, and their Ritas! They have the best fried Plantains (sp?), they melt in your mouth. I make a pig out of myself every time I go there!

Don, I have read your posts, and I find myself wishing that I were close to you so I could pay you a little visit now and then. I want you to know that you are in my prayers, and I thank God for this forum. Isn't it great? Listen, you take care of yourself, and keep us posted. We care! May God bless you.

Irma
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Thanks Don!wishing i lived where you live today....we are getting hit with one hell of a storm.I am so worried about the hydro going out.Glens needs for his machine.Suppose to stay off the roads!Got portable oxygen but not suppose to use when sleeping!.......Take care and send me some sun if you can and a little prayer that that dosnt happen.......Gina
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
We are getting dumped on, too, Gina. My Aunt in Florida just sent us a Christmas card taken at the beach! She's in her jeans and sunglassses and looks like a youngish 80 year old movie star!

I hope your power holds. Best heat up some hot soup in case the ice gets to us! Cindy
 

AngelManFL

Active member
Joined
Sep 30, 2007
Messages
98
Diagnosis
11/2007
Country
US
State
FL
City
Tampa Bay Area
Gina,

If it helps at all it is supposed to 40 degrees tonight! but back to 75 - 80 by Wednesday! I'll pray for sunshine for all of you up there.

Cindy, I lived in Boston for 10 years - but have been back home in Florida for the past 11 years.. I moved back after 3 years of shoveling in a row!

Gina, I agree with Cindy - find a gas generator - the right one could help run heaters too..

I wish you all well through these storms and pray you keep your power on..
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi Don!You really are an angelman!Thanks so much for your well wishes and support and i hope that your situation also is tolerable and you will find the strength to endure untill you can get your appt.I can almost feel the warmth of the sun coming my way from you?Cindy you got that soup on yet?.....Gina
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
how do you know when it is the end?

i'm the caregiver who wrote that our dr. will not prescribe ativan or morphine for my husband. his home health cnt who bathes him 3 xs a week told me recently he was 'in the last stages of his life', but what does that mean to you caregivers who say morphine and ativan help? what is your husband's status? is he on a bi-pap a lot? a trach/vent? can he still eat, and talk?

i lost a husband in 94 to acute lukemia, and altho he, himself, was a physician, he nor his other physician friends, let me know at the end that it was really the end, so i was in big-time denial when he actually died. they tho't they were all protecting me, but that's not true - i needed to know.

i just don't know what his 'last stages are', so please, any of you that can help me, i'll appreciate it. he can barely walk to the bathroom on his walker, and when he gets back to his rocking chair, he is soooo out of breath. he is on oxygen a lot, but his bi-pap more and more now. his breathing capacity is 50, and his anxiety level is off the roof.

i need your input. please.

jackiemax
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Hello Jackiemax:
I'm certain that every individual is different. Here are the things that I noted in the two to three weeks before my husband's death. At this time he could still do a standing transfer from the manual wheelchair onto the bed/toilet but could no longer walk. He then became increasingly tired and was therefore spending more time in bed (with the Bipap on of course). He did not seem as alert, would spend ages just sitting at the table with his various drinks in front of him and looking out of the window. He was hardly eating anything at all and even liquids were not taken in great quantity. He no longer had the energy to have a bath (even with the use of a lift) and so I washed him either in the wheelchair or on the bed. He was using an external catheter. At this time he was not on morphine or Ativan.

He developed a urinary tract infection and this was the start of a rapid decline. Got him onto Cipro for the UTI but on the 4th day when I went to get him up in the morning and took off the Bipap he became acutely short of breath. I had to put it on again rapidly and from then on he needed the Bipap all the time. He could no longer do a standing transfer, I used the lift for all transfers.

The Palliative Care team came that morning (he did not want to go to hospital) and by the end of the day he was on liquid morphine (5ml q4h). He could no longer tolerate being washed at the sink and so I did bed baths from then on. Things got minimally better for four or five days and then there was another decline and he barely got out of bed after that.

What followed was shortness of breath even on the Bipap. We had some Ativan but he only took one and did not feel it helped him particularly. But he did not display much anxiety. His oxygen levels fell significantly but in a variable fashion (they monitored them very frequently) and he was put on supplementary oxygen, this did help. At this time he could still swallow, could still use his hands enough to write. I would take the Bipap off briefly, just enough to give him ice chips or to clean his mouth with a Toothette and Club Soda. In the two days before his death he could not speak and could not write but could gesture with his hands. He died eleven days after the Palliative Care team came in. He chose to be sedated and then have the Bipap removed. Four hours after the Bipap was removed he died so very peacefully.

It was an exhausting and draining time. I hope these comments help you. Wishing you comfort and strength, Jackiemax.
 

swmn

Distinguished member
Joined
Apr 7, 2007
Messages
146
Reason
CALS
Country
US
State
Wi
City
marshfield
hi Landscape - just wanted to thank you for once again helping others - you have so much to share and we all are so glad you are here - So sorry for your loss. I've been praying for you and your family ... {{Holiday Hugs 4 U}}
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Jackiemax,just read your post I must admit that i am very puzzled as to why your doc.will not perscribe ativin or morphine especially if as you say your husbands anxiety is through the roof.This just seems cruel to me and it sounds like he is at the stage that he needs these meds to keep him comfortable.My husbands g.p had no problem whatsoever perscribing something as i told her i thought that he was beginning to suffer.My husband also is on bipap and oxygen for the good part of the day.It is so very hard to predict when my husband or yours will pass and as landscape put it everyone is different.All that i know is that i just want to keep my husband comfortable as you do yours ...so unless they can give you a really good reason why he should not have something i would really insist on it!I am not a medical professional and dont claim to have any expertese in this area but dammit this disease is cruel enough without denying the patient at least some form of comfort in the meds that are available......God Bless you and try to stay strong.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi landscape so very glad that you have decided to come back.Again i am so sorry for your loss and appreciate that even at this most painfull time in your life you are still reaching out to help others.Thankyou and we look forward to hearing from you......prayers and hugs....Gina
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Thanks so much for your condolences, I do appreciate them.
I should have said that I think age might make a difference. My husband, although he was extremely healthy and strong prior to diagnosis with ALS, was almost 80 when he died.
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
thanks you all for your information and comfort

hello again,

it is a monster, mean, disease - for all of us - the patients and the caregivers. my husband is becoming more anxious and the dr. is giving him buspar for it, 3xs a day. he says morphine and ativan could stop his breathing while asleep, so is not ready to let him have it at this time. ?

he is no longer interested in opening mail, reading, or much of anything. he watches tv a lot, but is sooooo weary and tired.

i don't know how much longer he will be with us, but none of his family seem to think he or i need any help at all. they all occasionally call and say how is he, but no one offers to come and physically help out. this is just not acceptable, but would do no good to raise cain, they are not going to change.

thank all of you for the comfort you share with me.

jackiemax
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi Jackiemax,my heart goes out to you.I know all too well how painfull and stressfull this damn cruel disease can be !Im so sorry that his familly is not thier to help you out.....Are they just in denial or incredibly insensitive?Sorry for being so blunt but i know and have had same experience with some familly members whom have reacted in the same fashion! Have you done any research on the effects of morphine for terminally ill patients?Please dont be offended im not trying to be pushy but it might put your mind at ease if you knew more about these meds in relationship to als. ..my husband takes ativin when he feels he needs it and it seems to help trememdously! I am not questioning your caretaking at all i know that you are doing a wonderfull job !You sound so very much alone with little emotional as well as physical support..please let this forum help you at least with the emotional part!Maybe some others on this forum can give you more suggestions as well.Unfortunately thier are so many agonizing decisions that we all have to make from time to time with caretaking i find it so helpfull to come here and get all the info i can before making a decision.............thinking of you and your husband Gina
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Jackie- sorry to hear of your hubby's decline. Almost sounds like Hospice can help-if they make home visits in your area. They will do things to help make him feel better emotionally, and since they deal with end-of- life issues they can advise how to get the family more involved.

Sometimes family members think they will always have next month or the month after so they put off visiting.

In our area Hospice comes in for up to a year, and they are a big help but you have to get them involved early enough so they have enough time to get to know both of you.
 
Status
Not open for further replies.
Top