Oh, Kathi, I'm so sorry. I fully understand your torn feelings between wanting it over and not being able to imagine life without him - it sounds just like I felt when my father was dying. I send you best wishes and thoughts that all will be over as easily for you both as possible, and remember - as long as you remember him, he is always alive for you.

Thank you all. Your words have been very helpful. My mom had a stroke 2 years ago that left her with memory and vision deficits so she wound up in a nursing home because my stepdad couldn't take care of her at home and they live too far away from me for them to live with me. Now she has had another stroke that has left her with left-sided paralysis and she has not really eaten or drunk anything for about a week. She is back at the nursing home and I'm here staying with my stepdad and going to see mom every day. I've been dealing with both of them pretty much on my own since her first stroke, since my siblings live out of state. Thankfully, she has always been very clear with me and my siblings that she wants no heroics, including feeding tubes, so we are all on the same page. I've been here with my stepdad alone for the past few days and it has been really tough. My nephew is coming tonight and my brother will be here in a few days so someone can be with her most of the time.  I just don't really know what to expect. After reading about hospice, I think I will insist we get hospice support ASAP, especially since my 81 year-old stepdad will be alone after having my mom for 35 years and they can be of help to him too. 

Right now, I'm so sad, but also somewhat relieved. My mom is an artist, smart, active and loved to travel ... all things she has not been able to be for the last two years and now she can't even get to the toilet! I have to keep telling her over and over that she had another stroke and that's why she can't get up and move around. She always feels like she has to go to the bathroom and even though she has a Foley cath in right now, she still cries for help to get up to go to the toilet. So I have to keep explaining to her why. She calms down for a few minutes, but starts right up again. They are giving her Ativan, but only twice a day. I guess my definition of comfort care is different from her doctor's.  Hopefully hospice will help.

Hi Teense

I too I am dealing with a parent that isn't quite able to cognitively understand what's going on with their decline. My dad has always been so independent and self-starting that its like I don't even know who he is anymore.

I'm also thinking of bringing in hospice care because I hear that people usually wait longer than they should to seek out their help. I haven't had a full night's sleep in a week because my dad wakes up and calls for me to help him to the bathroom, even though I've put him in Depends. Or he'll sit up to use the hand urinal and need help lying back down.

On top of that, he's becoming more and more demented by the hour it seems. He just woke me up a 2: 30am screaming about how its not fair, and "they had no justification" for the accusations against the "the people that took all those pictures." I can't even begin to follow the logic anymore. but he gets himself really worked up and can't get back to sleep. I feel so powerless because I can't understand what he's saying and I can't help him. He also wants to wear his glasses all the time now (even when he's asleep) because he says his eyes are playing tricks on him.

I'm so stressed and i'm the only caregiver and I'm still working part time. My friends are so young, and they don't really know how to react or be supportive. I think it just sorta freaks everybody out, which makes me feel really alone. The one friend that I know would understand just lost her dad to cancer a few weeks ago so I feel like being too involved with my dad might be too painful for her.

Sometimes, I feel like he's already gone because he's not really himself anymore. I feel guilty because sometimes I feel like I'm 'waiting" for him to die. I'm just scared to see him decline any further, I can't stand to see him suffer.

Tru, I'm so sorry to hear about your dad. My mom has been pretty much unresponsive for the last couple of days and isn't expected to last much longer, but up to this point, she also constantly wanted to get up to go to the bathroom even though she had a catheter and "privy panties". She also said things that were completely illogical, but according to hospice, this is pretty normal as they labor out of life. They tend to be somewhere in between worlds and you just need to keep reassuring him. I know how frustrating it is and I'm sorry you don't have anyone to help you. I have been very fortunate in that my mom had the money to be in a nursing home and when I put out the call to my family, they came from across the country so that we have been able to take 6-hour shifts so someone is with her all the time. You really need to get hospice help and if there is anyone who can come, don't be too proud to ask for help. Hospice also has information about end of life that can help you realize that much of what he is going through is harder on you to watch than it is on him. That has helped us all tremendously. We just keep reassuring her and take care of whatever her immediate needs are. This is really hard to watch someone decline like this, but what a gift you are giving him by being there for him. It will also teach you that you are capable of so much more than you thought you were. My brother and sister never considered themselves to be caregivers, but they have stepped up to the plate admirably. Hang in there. I will keep you in my prayers and I thank you for your response. 

Hi, Just wanted to introduce myself. I have been taking care of my mom for years now, we ared pretty much partners in life....lol. Not that either of us would ever admit that out loud.  Anyways, she is a multiple stroke victim and now has cancer throughout, with a side-dish of COPD to boot. Anyhow, I was living out in Calgary for awhile while she was here in Toronto area, where my brother and sister live. In January she fell and broke her hip, I flew in within hours and was here for the surgery and such. Went back to Calgary and left my great job to come home as I am her power of attorney for her health and my siblings do not understand that she is wanting to die at home rather then in a home. So here I am.  I decided to live about 2 hours away this time, just enough so that I can be there when I am needed but also far enough away that my siblings will finally have to step up to the plate a bit. Recently my mom returned to her apartment and I have set up all kinds of home care assisstance for her. I continually am going to see her and my sister has really stepped up alot.  The other night I went down for an overnight visit and my mom asked me to come live with her until she dies. My kids and grown and gone so that isn't a concern. However upon returning from Calgary I did get reinvolved with a gentleman I had a relationship with before leaving and we are currently living together.  Now what??? I feel that I need to go back and be with my mom to enable her to die with dignity in the environment she wants, but am I not entitled to my own life?  and if so then when will that happen???  I feel guilty, torn and simply overwhelmed. I mean if this is the guy for me then wouldn't he understand and wait for me? and if not then why would I want to try and plan a life with him?  My mom is my best friend and I feel that no matter how hard it is, that she deserves to end life the way she wants to.....besides is it not a gift to be able to share this extra time with her? It must have taken alot for her to ask me to come be with her, she is an extremely strong woman and very proud.  The doctor has given her less then a year and I see her declining, she is now about 84 lbs and is eating less, sleeping more, losing bladder control and becoming more confused daily. 

I would say this is a no brainer.  You'll never have another mom, I lost mine last August, I'm still trying to get through each day.  I miss her so!

Yes, I know what I have to do.....but my fear is what will I do with myself once she is gone and I am left alone...sigh. As you say, trying to get throught the day.

That will be very difficult, what has helped me is surrounding myself with family, friends and church along with prayer.  That is  what has helped me thus far.  I have small children also so they help too.  My mom lived with us and so everywhere I go in my home, she's  there.  Whenever any of my 3 little ones see me crying they all know why, they come up and hug me and say, we miss grandma too mom!  Even my 2 year old says, "you miss your mommy"?  I can't even describe the heartache I feel, most days, some days are better than others.  I guess it will get better from what I've been told.  Also, everyone handles things differently and I pray for you that you will be comforted when the time comes.  I will pray for you and your mom.

I also lost my mom in law the day after Easter this year, she battled brain cancer for 1 1/2 years, only 57 years old.  Her passing was tough as well but I think we did most of our grieving the day she was diagnosed.  My husband at that time fell apart, when she passed  a couple of weeks ago, he was very upset but I think alittled relieved in the fact we and she knew where she was going and she was out of her pain, the cancer we assumed spread all over.  It was a sad thing to watch her waste away and not a thing we could do about it.  So now my children do not have a grandma to grow up around, that is the part that hurts most.  With my mom passing, (in the previous post) was unexpected and my mom inlaw was of course terminal.

Hello, I'm new here and thankful as well. I'm not sure how i'm feeling. My mom just recently passed about 4 1/2 weeks ago, she was 78. Most of the time I feel awful. somedays, I'm not sure how I feel.: I'm sad, lonely, tired and sometimes anxious and extemely overwhelmed. Her condition was COPD. I am the the only child left  and was  her primary caregiver and power of attorney. I work full time, and was a part time student as well. Its been a long haul. She was under Hospice care when she passed on. which was for only for 11 days. I was not sure what to expect. I was with her when she took her last breath. My body responded similar to hers as she was passing on, so the staff had to attend to both of us that day. Now I feel withdrawn and not wanting to do anything. I have gone back to work and that is all I can manage to get done. I will not be going to school for summer session, thinking I need a break. It was final exam week during her passing, my instructors were great and I did lots of craming and make up work but I did pass my two courses. I'm trying to put my life back together and remember who I was before the three years before I started fully caring for her. I do have a few people close friends who call and check up me as well as family. They are getting annoyed because I won't take them up on dinner and other invitations, and now I feel like I have to justify why i'm not feeling up to it. This week I will contact Hospice for grief counseling to see if that will help. I'm trying to take one day at a time.

A Mox. Bless you, you will not regret what you are doing. Yes, your life may be on hold now, but as long as you are healthy you will be just fine. Try to schedule your self little joys that may soothe your soul for your self: for example make it a ritual of getting your hair cut weekly, get a massage, pedicure. Things that are for you and only you. Try to journal as well. No one has to know what you have done for you but you. Try as best you can to take care of you the best you can. Go to a resturante you've been wanting to go to. I will be praying for your strength. If there is a person who truely understands, talk to them also. Rest when you can. Bless you.