Rylee

Thank you all for your condolences. I'm still hanging on by a thread of sanity. This has gotten to be such a nightmare. I keep thinking about my mom and I break out bawling. One minute I'm laughing and talking with family the next something triggers me and I'm crying. I am just so overwhelmed with all that is going on that I had a seizure today. I got slurred speech and dizzy and unable to stand up. I'm ok now but it was scary. I think the stress and the lack of eating properly has done me under. I'm heading for bed now. I have another very LONG day tomorrow. Rylee

No Kayc, she didn't have ALS. She was paralyzed due to a surgery to remove a tumor from inside her spine. That was in 2008. She was bedridden from that moment on. Clematis, We did bring her home but she passed today. I posted another thread that talks about the experience. She wanted to come home and kept telling me she wanted to so I had to do it. I'm beside myself with sadness right now over losing her. I knew it was coming but I thought I was more prepared. I still broke down. I don't know what I'm going to do without my mother.

I'm so incredibly sad I can't breathe. My beautiful mother passed this afternoon at 12:30pm. (It's May Day). My brother, my daughter and myself were there with her. It was so much different than I expected it would be. She stopped being able to swallow yesterday and we were told to keep her completely sedated. So we did. She started to breathe funny and was taking a breath and then wouldn't for 2 seconds, then 5 seconds then 9 seconds and then hardly at all. She made some weird noises so we asked the CNA across the street to come help us to know if my mom was passing (because I've never heard that before). The woman took her BP and then told us that my mom was failing and then a few seconds later said she was gone. She just went to sleep and stopped breathing. No noises, no odd movements, nothing. She just went to sleep and stopped breathing. We sat with her while she got colder and colder. The hospice nurse came and took care of everything and verified that my mother was gone. She called the funeral home and an hour and a half later two men in suits came to get her. I couldn't watch them put her in the body bag!!!!!! I couldn't watch them take her out and take her away!!!!! My daughter, my brother and I went into my daughter's room and waited. I made her turn up the TV so I couldn't hear the noise of the gurney taking her away. I didn't know until after she had been taken away that my husband had stood there making sure that they treated my mother's body with dignity and respect. He said they put a white sheet around her, buckled her in and zipped up the bag. He told me that they were gentle and respectful with her. I'm so glad that he did that for my mother. I just couldn't see her put into that bag and taken away!!!! I'm so sad and upset I can barely breathe. Although I knew that she was dying and I was preparing myself for this event, I still screamed and cried and hyperventilated and nearly passed out because my precious mother was gone. I couldn't talk and I couldn't make the phone work to call people and when it did work I could barely breathe to tell anyone what was going on. Hospice counselor called me to talk but I couldn't talk with her. I just didn't want to. I didn't want anyone to touch me to hug me or anything. I just didn't want to deal with all this. I'm calmed down more now than I was but I'm still completely out of my mind thinking about the fact that my mom is gone. I keep thinking though that my mom is around in spirit. I don't know if she is but my daughter and my brother have both said they've felt her around. My brother, my daughter and I went out with a picture of my mother to a place to get her favorite ice cream treat, a hot fudge sundae. We put her picture on the table, put the hot fudge sundae in front of it with a spoon in it and then ate our own ice-cream treats, (We actually went to Yetti Yogurt). We talked about her and cried and after we were done we all took a bite of her ice-cream and told her we loved her. We left and came home. When we were home we were going to take her bed down but the room smelled so bad of death that we could barely breathe so we aired it out and put some Scentsy stuff in there. We finally got the bed down. We had made my grandson bunk in with his brother so we could put my mom in the room so we have to set his bed back up. Otherwise, we would just let the bed stay up. It won't be until after the funeral that we put my grandson back in the bedroom but still wanted to take the bed down. My daughter said she just couldn't handle seeing the bed up and empty. She just cried thinking about it being empty. Anyway... I appreciate your listening to me. I just hope I will be able to handle this week before the funeral. In our religion, we have special burial clothing and I am going to be one of the people who help dress her. That is going to be SO HARD!!! But I promised my mother I would do it and I take that honor seriously. I'm going to miss my mother SO MUCH!!!!

Thanks for the advice and the link. If my mom wasn't begging for water and yogurt all the time I wouldn't force it on her. I know when she stops being able to swallow that will be the time to stop giving her anything. I dread that moment especially if she is still begging for those things and I can't give them to her. We are already she will be dying soon but this process is so horrible. I read the link and the information might be accurate but I have a hard time believing that a person feels nothing when they have no food or water. How does a person who hasn't been in the dying process themselves, know there is no pain and all that stuff is going on? My mom is upset about not being able to wake up and keep her eyes open. She told me today, "I have to wake up. I can't stand being so tired." They keep her drugged up so bad she is sleeping all the time. She is in pain all the time. Mostly head pain. We are moving her from the AFH and into my home tomorrow. I figure I am staying in the home doing almost more than they are and I can do that at home. I have taken care of mom before in her condition (being paralyzed) and I know what it takes to take care of pressure sores and cleaning her up etc. It's a tough job but it will only be temporary so I think I can handle it. I'm staying here all the time anyway, I could be doing this at home. I will be getting a lot of help from my church and some family members. This was a quick decision but one I feel good about. However... because my sister is so angry with me she said she will never come visit my mother again and will just be at the funeral. I thought in spite of the fact that she was angry with me, that having the ability to sleep at the house and be in the room with my mom anytime she wanted and those sorts of things that she would stop being angry with me (at least for my mom's sake) and be thankful for the time she has to spend with her. I just don't get why she is doing what she is doing. It makes absolutely no sense and is stressing me out so bad that I want to scream and cry and beat my fists against a wall because my mother has been asking for my sister and wondering why she won't come see her. I won't tell my mom what's going on because it would only upset her. She doesn't need that.

Today was another hard day. My mom has progressed to another stage of death. She is starting to have even more difficulty swallowing and the hospice nurse told me that I need to consider withholding food and drink from my mom. I just can't do that. I promised her that until she absolutely couldn't swallow anything that I would not let her starve or thirst to death. Even if that means keeping her alive a little longer because of it. The nurse told me that my mom is going to stop being able to swallow in a few days and it would just be kinder to start that withholding now. I think she's wrong. I know it will come to the point she won't be able to have anything but until that happens I see no reason not to let her enjoy the few bites of yogurt and sips of water from the spoon. I'm so sad about this and the idea of her starving to death makes me want to scream. :'( My sister and I got into a huge argument over that. She thinks I am being selfish not just letting my mom starve to death and get her life over with. My sister doesn't have to be around to hear my mother crying out for water through the day and night. She has no idea what it is like to go through this. We got into a screaming fight (I was out in my car while my daughter stayed in the house with my mom) and now we're not talking anymore. She wanted to come and stay the night for the next three nights with my mom and make me stay away completely. I won't leave my mother. I made my mother a promise I wouldn't and now my sister because of the fight, decided that I have no right to be anywhere near her (my sister) and I have to leave when she comes to visit. I am willing to leave the room but not the premises. I told my sister she could bring a blow-up mattress to sleep on the floor if she wanted to stay too. I don't care of she stays but I do care that she wants me to leave for three days. I don't trust her to actually call me when my mom is passing or has passed before she has her body removed. This whole thing is more than I can handle. :'( Robin

Thank you all for your comments and suggestions. I so appreciate everything. I hope I can contribute more eventually than I am right now. I don't know how I'm going to get through this and it takes everything in me to talk about what's going on even though I know that it will help. I promise when I am able I will do my best to try to be supportive to others here who are dealing with things too. I feel rather selfish right now for not having the ability to help anyone else at this moment but asking for help for myself. So many others are grieving too and my heart goes out to them. This life is so hard to deal with and even harder to deal with the end of it. :'( As to whether my mom can eat or not. She can eat yogurt but that's all. I gave her some pudding several days ago but it didn't set well for some reason. She liked the taste but she ended up with diarrhea which in her situation is not a good thing. She has pressure sores so bad that they cover her entire backside and started developing along her spine line. The ones on her backside are deep and one of them are right to the bone. I can see the bone when they change the bandages. When she has bowel movements and it gets under the bandages, the sores just get worse. After she became paralyzed, I used to take care of my mother before I physically wasn't able anymore and had to put her in an adult family home. That was a hard day for all of us because I had always promised my mother that I would take care of her at home until the day she died if she ever needed me felt so guilty having to put her into a home, but I did the best I could until I couldn't anymore. So I have seen her behind and every other part of her so watching the caregivers cleaning her and changing her isn't a "shock" as far as seeing my mother's body goes. The pressure sores are shocking every time I see those but there is nothing else they can do. The hospice nurse said my mother's skin is breaking down really fast and she will continue getting them and the sores she has will continue getting worse no matter what we do, so they say it would make no difference to put her on her side or prop her up to relieve the pressure. She said because my mom can't feel them and she is dying, and panics when she is on her side (because of a partially collapsed lung causing her not to be able to breathe) they see no point to trying to make her lay on her side or prop her up off of them. Right now the object is to keep her comfortable. She is getting morphine and adavan and any other comfort meds they think will help. Last night she was in so much pain that I had to give her morphine and two other pain meds (the home leaves those meds with me during the night so I can give them to my mother as soon as she needs them). She has a sore throat and running nose. Today has been a difficult day watching her. She has been making a lot of new noises in her throat. They kind of sound like she's gargling water or something. I was told that is another step in the progression of her dying. She has been moaning a lot and when she's awake she wants water. She gets the water and then goes right back to sleep. We haven't tried anything to thicken the liquids. I think I will ask someone about that and see what we can do. The ice chips sound like a good idea too. She is so thirsty all the time. Hospice has been here when they need to be and once a week the nurse comes in. Twice a week the bath aid comes in. The chaplin has come once and the social worker has come twice in the past month that my mom has been on hospice. I've been here at the house with my mom now for a week as of yesterday (Thursday April 21st) I'm so exhausted. I appologize if I repeat myself in my posts. I tend to ramble and sometimes I can't remember if I said something already or not in other posts. If I do repeat too often I hope you'll forgive me. My mind is just so mushy and I can't think clearly and when I blink my eyes sometimes I find myself nodding off. I think my brains have oozed out my ears and left the building. Rylee

Hi, I decided that I needed to get help with the grief that I'm experiencing in losing my mother. I have been staying with her in the room at the adult family home for almost a week. They provided a bed for me to be with her so I could sleep during the night too. I have been watching as she is getting weaker and weaker, losing the ability to drink water without nearly choking and she is unable to use a straw to drink anything. I've had to spoon feed her liquids. She asks for water all the time because she is so thirsty all the time. I'm so heartbroken and I don't know how to deal with this. I know that it's ok to cry and all that but I have cried so often that I have run out of tears but then the tear bucket fills up again and there I am crying again. I don't want to let her see me crying so much. I don't know how to deal with these emotions and still be able to be strong for her and for the rest of the family. I feel guilty for wanting her to leave the earth and move on to the next sphere of existence. I believe there is a heaven and a God and Jesus and that she is going to heaven. I feel guilty because it's like saying, "Mom, you're not needed anymore, please just move on." But that's not what I feel. I feel sorrow and sadness and anger that she is dying. I want her to live and to be the mom I used to go places with and fight with and cry with and talk with and laugh with, but that's never going to happen. Now she is just laying in a bed, moaning and crying and barely being able to say words because she is so weak. She sleeps so much and when she is awake (or at least talking and telling me what she is doing) she talks about being on a train with her family that has died. She describes all of them. She tells me that the trains goes up into the clouds but she can't stay on it and jumps off before it gets to the clouds. She talks to people who aren't there and one day she reached her hands in the air, her eyes open and looking up and said, "I want to go with you" then a second of silence while she was still looking up and said something like she was responding to someone and said, "a huh... yes." and then got upset and kind of yelled, "Why not?" and then got depressed, went to sleep and didn't wake up until the next day. This is the kind of things I'm seeing and I know it's close but she just isn't leaving. I love her so much. I hate seeing her in such pain. I want her pain to end. She has been a wonderful mother and my best friend. I am going to miss her so much I can't even express it but I'm so tired of crying all day and all night sometimes. I don't know how to deal with all this. I know I'm going to be a basket case when she finally does pass. The hospice nurse told me it won't be much longer. I know when my mom passes she will be so much happier. She will be out of the crippled body she lives in (she is paraplegic due to a spinal surgery 8 years ago) and she will be dancing and walking and singing again. She'll be having a ball with her family that went before her. She will no longer be old and will get to play again if she wants. She will be an angel. I'm sorry to go on and on here. I just don't know what to say or what to do. I hope people won't get tired of me and my blubbering over all this. I am so dreading the end but also looking forward to it and I don't know how to deal with those mixed feeling. Rylee