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jsab23

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hi there I guess I am writing this to put my mind at ease if anyone else has been lucky enough to to have their loved one placed in Hospice
firstly I will say it is a wonderful place and the volunteeers and nurses are top notch, now onto my Mom, she was moved from home care to Hospice and it seems as though since she has been there she has been heavily sedated, she has been experiencing great head and neck pain 10/10 I guess I wasn't aware of the great pain that takes place with ALS as I was used to seeing my mom in only moderate pain at home but far more alert, it just seems like Hospice relies heavily on meds to give comfort without really knowing how close my mom is to death?!

I want whats best for my mom and if it means pain free but asleep is the best way then so be it I guess I am just asking what other people have experienced at the darkest of times 'end of life'
Thanks for reading my post, hopefully everyone was able to enjoy their holidays as best they could
 
Hello I am very much in the same situation as you but my mom is still at home. She has bad shoulder and leg pain and when I go see her almost every day she is out of it as well. Sometimes I am unsure if its because all the pain Meds or she is close to end of life. Hospice did not really say how long they think she may have to live. All they can do is keep her comfortable which they are doing. Its like you would like her to be alert with less pain meds but on the other hand I don't want to see her in pain. I once heard that you can live 3 to 5 years with ALS but if you are lucky you wont live past 1 year. I can not imagine having to watch my mother in this condition much longer.

Hang in there I am in the same vote.
 
Our hospice was great! They all loved Bruce and he did them. He got so close to the Chaplain that he ask him to preach his funeral. They did not keep him heavily sedated, but comfortable. I know this is hard to watch, but try to enjoy the moment the best you can, you can't get those moments back. I was so tired when all was going on that it was hard to do that.
 
There is always a chance that something else is causing the 10/10 levels of pain. I'd ask them to investigate that possibility! I have never heard of a 10/10 pain rating in ALS.
 
My wife was in Hospice and it served us well. At home the care was phenomenal. She really had a better quality of life with Hospice. She went back to the Hospice facility in August and that is where she died. I really liked the care she had at home. I am sorry for you having to put her there, but sometimes it is the best place for someone with such a horrible disease. Even Hospice did not understand what she was going through untill she died. Take care and the best to you.
 
Some Pals definitely experience pain as their muscles weaken- -

you need to discuss with them what their plan is for her. Don't be afraid to ask questions I am sure they are more than happy to explain to you why she is so sedated.
 
thankyou, your situation seems very similar to mine and yes seeing her in pain or in a coma state is difficult
 
There is always a chance that something else is causing the 10/10 levels of pain. I'd ask them to investigate that possibility! I have never heard of a 10/10 pain rating in ALS.

yes we've tried investigating through several tests with the hospital and to no avail, everything checked out ok :?:

very puzzling!
 
Hello I am very much in the same situation as you but my mom is still at home. She has bad shoulder and leg pain and when I go see her almost every day she is out of it as well. Sometimes I am unsure if its because all the pain Meds or she is close to end of life. Hospice did not really say how long they think she may have to live. All they can do is keep her comfortable which they are doing. Its like you would like her to be alert with less pain meds but on the other hand I don't want to see her in pain. I once heard that you can live 3 to 5 years with ALS but if you are lucky you wont live past 1 year. I can not imagine having to watch my mother in this condition much longer.

Hang in there I am in the same vote.

thankyou, your situation seems very similar to mine and yes seeing her in pain or in a coma state is difficult
 
My wife was in Hospice and it served us well. At home the care was phenomenal. She really had a better quality of life with Hospice. She went back to the Hospice facility in August and that is where she died. I really liked the care she had at home. I am sorry for you having to put her there, but sometimes it is the best place for someone with such a horrible disease. Even Hospice did not understand what she was going through untill she died. Take care and the best to you.


Thankyou, yes it is a wonderful place and the volunteers/nurses are inspiring
 
Some Pals definitely experience pain as their muscles weaken- -

you need to discuss with them what their plan is for her. Don't be afraid to ask questions I am sure they are more than happy to explain to you why she is so sedated.


well pain management is their method's, they ask us daily what we would like see done and it all comes down to pain free well that comes at a price of not being alert

we will be trying the pain patch either today or Monday as it seems to give a steadier yet less intense dose of meds
 
I have genetic spinal degeneration which causes bulging discs that impinge on nerves. The result is severe pain.

All of us have this degeneration separate from ALS to some degree as we age.
 
well I would just like to extend my thanks out to everyone on behalf of myself and my mom who's suffering ended yesterday from ALS...Those who took time out to comment with input on my posts although ALS has not become any clearer or easier to accept hearing of others going through similar circumstance has helped us along the way
Mom was 83 and diagnosed 2 years ago but passed away Jan 9th, no one should have to suffer as she did and yes there is dignity in dying
RIP MOM
 
My sincere condolences to you and your family. She was well loved and well cared for; indeed we all aspire to maintain our human dignity, and you ensured your Mom kept hers.

I wish you courage in the days ahead.
 
I am so sorry about your Mom. Treasure the good times and know she is much better off and in no suffering. I feel sure that you will be brave in this time to come. I lost my wife four months ago, and grief is a strange thing. Sometimes it comes on in the most unusual times and places. It washes over you like a bitter wave. God bless you and know that He is your Hope.
 
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