I am my mom's only caregiver while she is on hospice. My mom is 75, and I'm 35. I am her only child. My whole entire life my mom has been my only family. Up until this point I was use to having it always be just us. When she retired 8 years ago, I moved away from my mom and became a flight attendant. I would call my mom 3-6 times a day no matter where in the world i was. I even visited her 1-2 times a month.
Six months ago, my mom was diagnosed with stage 3 kidney cancer, and the doctors believed there was nothing else that could be done for her, given her other health conditions. My mom had a heart valve replacement, she has COPD, she just wasn't in the best of shape, and we both agreed. The hospital staff after diagnosing her discharged her to a nursing facility for "rehab". They said she could no longer live alone. This gave me the opportunity to figure out what I was going to do, and to get a few things in order. Within a month of my mom being at the nursing facility, she developed a pressure sore on her lower back. The nursing facility decided it would be best if they treat her, until she could be released home. I was okay with this, since her insurence covered her stay. Otherwise, the nursing facility was almost $10,000 a month, and that just didn't make sense to me. I
I would visit my mom, called her all the time, just like she was at home. However as each week went by, I noticed she was losing more and more of herself. She no longer got dressed, she stopped eating meat, then solid foods all together. She stopped going to physical therapy, and one day she stopped getting out of bed. The most heart breaking thing was she eventually stopped answering her phone when I would call her.
The staff and doctors immediately said her Cancer must be spreading, this is "the process", and that she should go home to be on hospice. My original plan was to move my mom in with me, but her doctor convinced me of a thing he called "travel trauma". He felt the 7 hour car ride to where I lived would be detrimental to my mom's health. My mom was loosing so much weight, and each day becoming weaker and weaker. I even thought about her staying at the nursing facility, but I realized that wasn't what either one of us wanted. My fear became that she would die at the nursing facility. I took a leave of absence from my job, and after 4 months of her being in a nursing facility, I took my mom to her house to be on hospice. I got her entire house ready for her.
I have been taking care of my mom for less than a month, and my emotions have been all over the place. Our relationship is not the same. I have no friends in my moms small town, I miss my job, my friends, and more than anything I am just depressed from watching my mom get closer to death. Nobody releases me, I am with my mom 24 hours a day in her house. Hospice has reached out to me with volunteers to watch my mom for a couple of hours a week while I do errands. I'm also watching my mom's 14 year old dog, and he cries at times over my mom. It's just the most heart breaking situation for me, and I never thought this is how it would be. Seeing my mom's beautiful face each morning is a gift. But as each day passes, I feel I'm losing it. I get upset with my mom, then at me for being selfish. My mom is bed bound, barely talks to me, she bleeds from the cancer, she mumbles things, keeps her eyes shut the majority of the day, only drinks liquids. I'm just emotionally exhausted. I can only imagine what my mom is going through.
Hospice keeps pushing morphine on my mom, and I refuse it. I asked my mom weeks ago if giving her liquid morphine for her pain would be okay with her. He exact words were "absolutely not". My mom is not as verbal now. I want to cherish this time with my mom.
It's just so hard, and frustrating. I've video tapped her, wrote her a couple of letters, I play music for her, I tell her I love her every day, I kiss her on her forehead and tell her how thankful I am that she is my mom.
How do you cherish your loved ones, when time is not on your side? I Thank you for reading my story.
You are doing everything right by your beloved mom. I know this is a very difficult time. Thinking of you. Keep you and your mom in my thoughts.
My mom keeps her eyes closed the majority of the day. I believe she is sleeping/resting. She takes a few sips of liquid through out the day. I had to call hospice this morning to help me rotate her in her bed, since she no longer assists me. The hospice aide said it looks like "she's winding down". I don't know how to take a lot of things that are said about my mom. She is definitely stoic. According to the hospice book that was given to me, it looks as if she might be in the 1-2 week stage left. I just can't imagine that being true.
I did take the advice of finding an old photo album, and telling her about the pictures. I stumbled upon about 30 photos in an old paper bag that I have never seen of my mom before. She was between 27-31 years old, and it was such a gift! She lived a life! I keep telling myself that.
My mom's dog is doing well, I took care of him the moment my mom went into the nursing facility. He's been a great companion to my mom, and for me as well. I feel as if I spend the majority of the day aimlessly trying to get things done, and not accomplishing anything. My mom's medical bed is in the living room, she no longer watches TV, so I keep lots of 60s music and jazz on for her :)
I have been thinking about the morphine. A nurse came out yesterday, and thought she looked restful. She thought for now, it's okay not to use. I no longer feel frustrated with caring for my mom, as I feel sad and anxious of what tomorrow might bring. Hospice has truly been a miracle, they have supported me a lot in these past few weeks.
I just can not express my thanks again for all the great advice. I will keep updates on my mom.
I have no idea how much pain your mother is in, if it is manageable I would respect her wishes on the morphine, if it is really bad and she is crying out, I think I would make her comfortable. If she can no longer communicate with you, you have no way of knowing...she may have never expected the pain to worsen if it has.
My mother has always expressed that she didn't want to go into a nursing home, but when someone is no longer knows what is going on, I am not sure it really matters anymore. I used to be very judgmental of people putting their families in a facility, but sometimes the care giving situation can become a nightmare. I know in our area there are hospice centers that patients go to when home care becomes too hard. These places typically offer options of admitting for a few weeks for caregiver respite. I think you may need to consider doing that from time to time. Your mother may have only weeks to live or she may have months to years left. You must take care of yourself in order to continue to provide the ongoing care and support you have so lovingly been giving. My prayers are with you...there are no easy answers in situations like this.
Consider the offer of respite care from Hospice as well. Even if you just take a walk, get a haircut or take a nap. What you are going through is very stressful; don't think that wanting help is a weakness.
I am very sorry you are going through this. Cherish the time you have left with each other. It's very difficult to let your mother go - a life changing event for you. You made the correct choice for her with Hospice care. What more could your mother want when she has had you for a daughter that continues to give her love and respect. Your mom knows this and it is the greatest gift you could ever give her.
Also, regarding the morphine - if Mom is at all lucid at times, ask her if she would like some pain relief. You don't have to call it morphine - just ask her if she would like something for her pain. She may still refuse, but if she accepts, it might be comforting to you to know she's not in so much pain.
You are doing everything exactly right. You are honoring your mother's wishes regarding morphine, etc.; you're spending time with her and doing what you can to keep her comfortable and happy.
There's no easy way to say this: you know the end is near, whether it's tomorrow or 6 months from now, it's coming. You won't be ready - none of us ever are, even when we know it's imminent. My father was very, very ill for over 6 months after a fall at home - he went to the hospital and then to a nursing home for rehab, and never came home. The health issues just grew and grew and finally, he passed away. We knew it was coming - in fact, 2 months before he died, he was on life support and we were told to prepare to pull it and let him pass away, because he wasn't expected to live - but he rallied and lived 2 more months. Even when the end came, we weren't ready. Mom passed more suddenly just 8 months ago, and we definitely weren't ready for that. Fine one day, and gone the next.
What I'm saying with all this is to just cherish the time you have - which is exactly what you're already doing. You're doing all the right things, other than one small thing - you're not giving yourself a small break now and then. If Mom seems to have some times where she's ok to be with someone else, see if your local agency for the aged can provide an hour or two of respite care so you can go out for a walk or just get away for a bit. It doesn't have to be huge blocks of time - but just something to give yourself a break.