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Amanda81

Active member
Joined
Nov 1, 2012
Messages
57
Reason
Loved one DX
Diagnosis
12/2012
Country
US
State
IL
City
Central IL
My mom is at the end. You all have been an immense help from the beginning, before we even had a diagnosis. I need you now more than ever. She has slept all day for the past two days. Today she got oxygen and I think that is part of it. But I think we are also just close to "the end". What are other signs? When should I call family to come say good bye? She got her hospital bed Thursday and her cat hasn't left her side since. He knows. She hasn't eaten in two weeks and stopped drinking Tuesday or Wednesday. She only gets the fluids we give her with meds twice a day or maybe 3 times. She is using her bipap almost all day and night.

I thought I was ready... she has suffered so long and she has been so ready for the fight to be over. I thought I would almost be relieved for her and for me. But I'm freaking out! I want to be here when it happens, I don't want her to be with someone else, I want her to be with me. But how do I know? I know it is different for everyone, but I just don't know what to do... I need someone to talk me through this and tell me what to look for. When do I stop going home at night and stop going to work for my shortened 4 hour shifts? Help. Please.
 
Amanda. I am so sorry. Please know we are with you in spirit.

Everyone is different. It sounds like it is close. You must do what is right for you. When my mom died ( FTD/ALS) I knew she was dying but thought it would be several days. Then suddenly her breathing changed and she was gone in 10 minutes. I believe she chose her moment when her closest family were all there.

She may need to see certain people before she can go so if there are people to call like that you probably should do so.

We can not see what you see but if she is not drinking it will not be long. I am sorry. My prayers are with you and your mom
 
Our prayers are with you and your Mom! ��
 
Amanda, I am so sorry. I so understand the intense fear you are going through right now. I was with my mother when she passed away from colon cancer 16 1/2 years ago. Nobody, is ever ready to say goodbye to their loved one's. Hold your mother's hand and tell her how much you love her. I would also pray with her. That is what I did. Mom passed away very peacefully. I think from what you wrote that it is going to be very soon with your mom. I would call in all of her loved one's now.
I know alot of people won't believe in this. But, when mom passed my dad and I were each holding one of her hands. I physically felt something holding me up and comforting me. It's hard to explain unless you've experienced it. But, I guarantee God is with you and your family and you will feel his presence. Hugs to you, Kim
 
Amanda, I am so sorry. I cry with you and for you as your mom, you and your family and going through this most difficult period.
 
Amanda--you should call everyone. All the signs you mentioned are definitely signs that the end is very near. Please now that we are all with you in our thoughts and hearts. As far as exactly how long--no one knows and no one can tell you. Is hospice involved? the nurse should be able to give you a rough timeline and ideas of what to look for.

big hug
 
Thank you all. I have been reading about signs of death. They separate them into two categories. The first category being the one I think she is in and they estimate 2 weeks of this. The next category is approximately 3 days and involves a coma or semi-coma condition. She will still be aware of her surroundings but not be able to respond. I was waiting for this to call the family. She does not want visitors now, she is still very aware of everything, just sleeping most of the time (with drugs to help). I don't want to go against her wishes. Can anyone tell me if this second stage is what happened with a loved one for you?

Hospice is involved. Our next visit is Wednesday.
 
It was not like that with my mom. She was alert up until the last couple of hours. If your mom is not taking fluids I do not think it will be anywhere near 2 weeks. Can you ask hospice to come sooner? They will be able to assess things and support you
 
I agree with Nikki--no fluids speeds things up. Hospice should be coming daily or every other day now. (in my opinion anyway). don't be shy about calling them in--but they don't have a crystal ball either. When my mom died hospice had visited that day and she was not even on their watch list.

go with your gut feelings and trust your intuition. you may want to call the family and tell them that you think it is only a couple weeks away so they can begin to make plans.
 
How much fluid is she getting with her medication? A person can only live 3-4 days without liquids, but it sounds like she is getting a bit so it may be a little longer. I agree that hospice can help you with how much time she has. How much is she urinating? A person should be producing 1 oz of urine an hour, after that the kidneys are not cleaning out the toxins.
 
She is getting about 80-100 mL's a day. Today she asked for extra fluids in her tube. I'm guessing her body was craving hydration. She is still producing urine, but it is hard to tell how much. She only lets us change her diaper twice a day because it is so taxing on her energy level to do anything but lay there (she doesn't have sores and isn't showing signs of anything starting). I have noticed that her diapers are very dark colored. More so than amber color sometimes. I thought it might be stool, but I am not sure.

No offense, I thank you all for your responses and please keep your information coming, but I think I am more scared now than I was when I posted this. I will be making some phone calls tomorrow. Please keep responding, I appreciate the honesty.
 
You can always give her water through her PEG tube. If she had an IV we would be maintaining her hydration at a rate of 75mls/hour so you could give her 300mls every 4 hours, or 150 mls. every 2 hours if she finds that volume too much. It probably would be a lot easier on her to have a urinary catheter put in, then she would not have to have diaper changes, and keep an absorbent pad under her for stool if there is any. I am so sorry that you have to go through this. I don't know what your situation is as far as your father, brothers or sisters, but I would it would be nice for you to have someone with you for support as well. Is there a nurse there with her? I have been nursing for a long time so I can usually tell when the end is near by their breathing, like long pauses between breaths. Obviously if her bipap has a set rate that won't be the case. It is scary and I don't think we ever are truly prepared when the end does come. I knew it was my brother's last day, even though he had been talking and doing some final business on the phone that morning. I called my sisters and parents, and we were there with him at the end. I am so thankful that we were able to be there, and it was a gift, but it still hurt so much. I wish there were more that I could say of do to help you.
Paulette
 
We are here Amanda, and we understand.

I don't know that I have much to add to the wisdom so many have shared here. But I wanted you to see a message if you log back in, and know that we are all united in some way through this disease. So even though I don't know you, I feel like we are all linked and I can offer you just kind words from someone who is going to be there soon with her husband.

Be kind to yourself, try to make the most of the time now with her. Can you ask her what she wants in the morning again. Remember if she knows she is nearing the end she may be ready for saying goodbyes, even if she wasn't today.

Does she have an advanced health care plan saying what her wishes are?

Holding your hand girl, I hope you get some family around you tomorrow. Can they even come without seeing her directly at first and spend some time with you. Then she may decide by the next day that they are around and she does want to see them? If she is sleeping could they come and visit with you in the kitchen for a cuppa at least?

Who is with your mum when you go home at night and out to work?
 
Thoughts and prayers are with you. Please know that we are all here for you.

Debbie
 
zoohouse - She doesn't want additional fluids that would only prolong the inevitable. She will ask for them sometimes like yesterday, but she doesn't want to be on a schedule of getting them. We also tried a catheter a while back when she didn't want to get up to go to the bathroom anymore and the nurse had trouble inserting. Then she got a lot of pain and an infection. So that's out :( As for support, I have my aunt living with her and I stay with her during the day while she is at work. We have one other person that helps us change her. I am an only child and my parents are divorced. She has a lot of friends and family, but she doesn't want them to see her like this, so it is just me and my aunt and mom's friend. It's okay, we are making it work... she is worth it.

Thank you all again for the responses. Just knowing you are all there is comforting.
 
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