I'm new here. Losing my mother

[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

[kayc]

My sister chokes easily if drinking liquid, have you considered thickener?  We've had to use that with her.  I'm surprised she's not on IV if she's having a hard time getting liquid in.  You might try ice chips too to alleviate her thirst.  Also, some vegetables are high in water, perhaps cooking something with them would help.  My sister is quadriplegic and when they did the emergency trach 48 years ago, they butchered her vocal chords as well.

It is so hard to watch your mom go, bit by bit, I had to go through that with my mom.  

No one here will get tired of your posting, so let it out, we're here to listen.  Usually someone will be here within a few minutes unless it's nighttime.  

I reached the point where I wanted my mom to go because I didn't want her to suffer any more and she didn't have any more quality of life.  It is hard to watch them go through this.  But at the same time I wanted to hang onto her.  It's common to feel conflicting emotions at the same time, both of them valid.

I'm glad you are able to be with her.  My mom had to be in a dementia care facility, she was advanced stage and they required two people to handle her, and 24/7 watching.  I live 2 hours away from there and it is hard to not be able to be there every day, but I was able to visit her after work when it wasn't snowing too hard.  

I'm so sorry for what you are going through, anticipatory grief is very hard.

[enna]

Oh, my dear Rylee, I am so sorry that you are going through this difficult time. I cannot imagine how hard it is for you to watch your dear mother begin to leave this earth. Your story brought tears to my eyes. I am glad you found this place. One thing we are very good at is listening to the stories each of us have to share.

I hope that the hospice people who help your mother also have been helping you. I do not know where you are living but it is so important that you get the support you need at this time. It does sound like your mother is preparing to leave and she will do so when it is her time. I hope that her pain is being managed as best as it can be. This will also help you knowing that she is not in pain.

There is a website that you may find helpful that is filled with beautiful bits of advice from an RN who has dedicated her career helping families with the dying process. Her name is Barbara Karnes, RN and the link is www.bkbooks.com. The pamphlets she has written are so helpful and she now has a new DVD called New Rules for End of Life Care. I have read most of her writings and have given many of the pamphlets to others who find themselves needing help. Many of her writings are downloadable so you do not have to buy anything. 

[Rylee]

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

[kayc]

When you''re going through this, it's hard just to get through it and important to take care of yourself, don't worry about others, this is your time to look after you.

I do remember what it's like being a caregiver as I took care of my MIL when she was bedridden with cancer for nearly three years.  It is exhausting!

I'm glad you have hospice and bathing help, etc.  I remember how hard it was not getting any relief, it was a long time ago when my kids were babies.

I remember strategically placing foam to help her keep from getting bedsores, they can be quite a problem.

 

[MartyT]

Rylee, my dear, I'm so sorry for what you are going through with your mother ~ and please don't worry about supporting anyone here. Right now you need all the support we can offer to you, and I hope you can feel our collective arms around you. We will continue to be here for you throughout this most challenging time, as you find your way through whatever lies ahead.  ♥

[KATPILOT]

Rylee, please don't feel the need to apologize. There will come a time one day when someone new will need your advice. Then it will be your time to give back for you will have been through it.. It sounds a bit like you need to rest more. What you are going through gives a serious blow to your own health. Take a little time to ensure you are eating right. I know it's hard to rest well sleeping as you are but it's very, very important.

[EMarie]

It may not feel like it now but you are doing the best you can and that is enough! You are honoring your mother for caring as much as you do. I once heard a pastor say that there must be so many hearing aids, hip replacements, old joints, etc at the gates of heaven. I took care of my grandfather for over a year, and when he was close to passing, he was having trouble letting go. Before he passed I told him everything he worked so hard would be taken care and that we would take care of grandmother. It was incredibly hard and something I wish no one ever had experienced. My one solace was that at the gates I knew he lost his closed up throat, his dementia, his arthritis and got a new body with no more pain. There is no shame in feeling relief for them! 

[kayc]

EMarie,

Thank you for sharing and bless you for taking such good care of your grandpa!  It's common to feel both relief and the missing them when they go through so much before they pass.  I felt that with my own mom who suffered with Leukemia and Dementia.  I got a smile when I read about the hearing aids, etc. being left at the gate.

[Rylee]

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

[MartyT]

Robin, my dear, I am so sorry. Tensions run high in families when you're doing your best in a situation like this and see no reward ~ and sometimes only criticism ~ for your efforts. You ARE handling it, and you ARE doing your best under the most difficult and painful circumstances. 

I hope you will take a few moments to read this, as it may give you some reassurance: The Truth About The Dying Process: Dispelling 8 Myths about the Dying Process

[kayc]

I'm sorry you're in such a hard position with everyone around you pressuring you.  I pray for wisdom and peace for you.  I'm going to go read the link Marty posted...

[Clematis]

I am so sorry, Rylee, that you are going through this, and having a sister who is taking it out on you makes everything harder (I have two sisters who have been doing this, but since they live across the country, it is easier to deal with). I watched my dad go downhill and it was very difficult. I guess in a way it was better that his final end went a lot faster than what you are describing, so that was good. He had some of the same experiences you are describing near the end...he thought he was going on a journey, and he told me his father was in the room, and that sort of thing. I think he had one foot in this world and one in the next.

My aunt died not long later and she was in that same situation you describe where she wasn't being given fluids and some of us (her kids & nieces) were alarmed. I thought that was terrible-that she would die faster if she had no fluids, but the hospice nurse gave me a good explanation of how the dying body has different needs in the way of food and fluids than a well and healthy one and. The information she gave me was very helpful in understanding what was going on. Is it possible that your hospice nurse could give you more of an explanation? I found that the hospice nurses were exceptionally patient and generous with information and support. They were also unbelievingly available.

We all really feel for you, and you aren't alone. We are here for you and you should never think twice about reaching out to us. Remember to take care of yourself and be careful as you move about and do things...it is so easy to be distracted because you have so much on your mind. It sounds like you are doing everything possible for your mom...

[Clematis]

I read the link that Marty posted and it made a lot of sense in thinking about my dad's end and also that of my aunt...

[Rylee]

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. 

[kayc]

I am so sorry, Rylee.  You can't worry about your sister's responses, I think she will come to regret her decision, but it's hers to make.  Try not to hold animosity towards her, I know it will be hard, but let her decisions and consequences be solely hers.  You have enough to keep you occupied taking care of your mom and remembering to breathe and take care of yourself.  I've been a caregiver, it's hard.  But it's also a very special time, a time you will not regret or forget.  

Does your mom have ALS?  Just wondering the reason for her paralysis.

I, too, have not heard of withholding food.  Can she at least have ice chips so she doesn't feel parched?  When my mom was dying, they didn't tell us to withhold food or water, so this is new to me.

Yeah, I wouldn't tell your mom, just say she can't make it right now, maybe tomorrow (or next week), we'll see.  I'm so sorry, this has put you in an unfair position.  

You're in my thoughts and prayers, and so is your mom.

[Clematis]

Rylee, it really does sound like you are in a difficult position. From what I understand, when people are dying they do not want or need fluids and it is more difficult on them to force fluids by way of an IV or nutrition by way of a feeding tube. If she's hungry, she's hungry...or thirsty. I would have a hard time withholding what was being asked for, although it does make sense from what I know not to force it. 

I hope that if you are taking her home that you really do have enough help. I don't think a person can do it alone, even a person with sufficient skills. I found myself suddenly faced with the prospect of caring for my dad alone and I had five days (while he was in respite care) to figure out how to get some help. Unfortunately, it was five days in between the Christmas 4-day weekend and the New Year's Eve 4-day weekend, and I just couldn't take care of himself myself because he was incontinent and could not transfer himself. I couldn't get any help and felt rather desperate. Just make sure that you really have some help and don't try to take it all on yourself.

I agree with Kay, I wouldn't tell your mother anything about your sister that would upset her; it's the last thing she needs. I think you should focus on taking care of your mom and also yourself. If you're not sure if your'e doing the right thing, think about how you would feel afterward if each choice went this way or that. You have to live with yourself after whatever you do (and so does your sister and everyone else). If you make a decision that feels right inside, you will know you did the right thing and be able to live with yourself, no matter what happens. Keep us posted, ok?

[Clematis]

Rylee, I keep thinking about you and wondering how you are doing. These days must be quite difficult for you and I hope you are getting through them ok. -Laura

[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. 

 

[T2Logan]

Rylee -  I am in a similar spot with my mother at the moment as well. She's gone up and down but each "down" is lower than the last and each "up" is never as good as before. She's on a downward trend and i can relate a lot to what you have said. She has slept most of the past 2 days and can't swallow often at all. She's fading quickly. Like you I wish she was just out of pain and suffering, yet she's hanging on for some reason. I don't want to lose my mother, but I don't want her to stay like this either. She will not improve so her quality of life is tremendously hindered. I'm at a loss of what to do as well. I'm not sure what else to add, but I wanted to offer some words of comfort that you are not alone in this moment.

[Clematis]

Rylee, I'm so sorry. I've been thinking about you and wondering how it was going because it sounded like it would be any day that she would be gone. It'll be hard. Take care of yourself-eat, sleep, drink water, take care of what you have to and no more right now. Keep reminding yourself that you did everything for her. She wanted to go home and die at home and you helped her do that. So now, take care of you. Be careful walking so you don't fall. Be careful driving-and don't even drive if you don't have to. Try to remember where you left your purse, keys, credit cards, etc, so you don't lose stuff. In the beginning, it's one step at a time through an arduous path and you're starting off exhausted. So please take care of yourself and be careful, ok? -Laura

[kayc]

Rylee,

I am so sorry.  I don't know that we can be prepared for their death, even when we've experienced anticipatory grief.  There is still that finality that hits.

 

[Clematis]

I think that is totally true, Kay. I  don't think anything can really prepare for you for what it will be like when your loved one is actually gone. I know that foe me what I anticipated feeling compared to what I have actually gone through with my dad's loss is like a pimple on a whale. And it hasn't even been five months...