How can I cherish time together with my mom? Without being frustrated.

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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.

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Dear Carolsdaughter,

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.
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Carolsdaughter, I know how hard this is and I will add you and your dear Mom to my prayers.
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Thank you so much for all of the thoughtful replies, and kind words. Thank you for taking the time to read about me and my mom.

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.
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You are in a very difficult place right now. I understand as I have been the only one of 7 children to be the caregiver to my parents. Some days it is overwhelming because you love them and are so very close to them, yet at the same time you know that the relief you so desperately need will only come when they pass away, which is not what you want. It is feeling of being trapped, then extreme guilt for feeling that way.
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.
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All of us here speak from experience and while it may not be an experience you choose, make the most of your time together and celebrate your mother daughter relationship now. Hold her hand, rub her shoulders, keep her comfortable. I do wish you would reconsider & offer her the morphine- present it as above, as "something for pain". You say you see signs that she is in pain when you are with her, why deny her something that may help? She won't get addicted; maybe you fear it will shorten your time together? Give it a try and see if you notice a difference in her physical symptoms meaning your mom looks more relaxed. Sometimes parents go the stoic route & don't want to acknowledge their pain to their loved ones as they think if they show strength in refusing pain meds  it is providing comfort to you, the caregiver. Just a thought for you to consider. Cancer can be very painful and stressful to both patient and CG especially if you see blood in her urine. She needs to relax & the medication will help her. If you feel she needs a medication to ease her anxiety you can request a medication for just that- to relieve anxiety.  Use the resources that Hospice offers. 
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. 
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Hugs Carol...
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Along with some heavy anticipatory grief, I also hear some strong separation anxiety from your mom going on which is understandable given how close you two have been. I would take Hospice up on their respite offer. I would also talk with their chaplain about your feelings. You might want to ask your doctor for an anti-depressant. Take care of yourself.
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First of all. You are doing a beautiful job and all the feelings you are having are quiet normal. There is no escape. That is one of the hardest things. Each morning when you wake. you know that you are waking into another difficult day. The only release is for her to pass and so you want that and you don't want that. There is no satisfactory outcome. Dying is hard work. The body wants to live long after mentally seeing that it's a losing battle. So while the mind is still good and the body is shot, the mind has to wait on it's old friend the body to give it up. You are the witness. You know that your history is being made. That your life as you know it is slowly ebbing away. How fortunate you are that you were able to go away to seek your fortune. Your mom was able to see that you would make it in the world. As a parent, that is a gift you gave her. About the morphine. It might be time to reconsider. I'm not sure what it profits her to linger in pain. I'm sure it's very hard on you to watch her suffer. The line between life and death is so thin it's like a vapor. But it's a strong line. Try to be in the moment. Let the world wait. What seems to be taking so long now, looking back it will seem it flew by. Perhaps you have photo albums of your mom as a girl. Perhaps you could look through the pages of her life and "read" the pages to her. Here you are with your parents. Here is your first day of school. Here is your grandparents. A Christmas. A day at the beach. Read to her about her life and what a good life she had. Shift her focus from the pain. Read to her about your life and what a great parent she has been. If there are no albums, it's ok. You can read her life without them. Let her hear your voice. Tell her of your plans for your future. Assure her that you will be calling always. Touch her. Memorize her beautiful shoulders and the warmth of her. Put your hand in hers. She is not alone. You have brought her to all of us. You are not alone. You are young. You are full of life. Life she gave you. If you have the funds, hire a sitter to assist you. Perhaps the hospice volunteers know someone. Take time to rest. When you are restless, Meditate. Breathe in slowly through your nose. Hold your breath and then breathe out slowly though your mouth. Do this a few times every hour. Stretch. Try to take a 10 min walk. Eat. Write it all out. It's a short wait. We all go down this road. Sometimes it's us on the bed. Sometimes we witness. Sometimes it seems it's both parts that we play. Allow your higher self to float above and look down and see you there in the room by your moms bed. There is the mom who is loved and the daughter who is being a blessing to the mom simply with her presence. There is the old faithful dog. I'm sure on your travels you did this many times. Where you connected with mom from far away. You are with her today. Give her old dog a rub. Come back and let us know how it's going. Trust yourself. We are all glad you are there to see her through.
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I just re-read your post and see that hospice has offered to give you some respite care - take it. Even if you only sit outside at the house, where you are still nearby. Get some sunshine, read a book or just relax and know that Mom is in capable, caring hands while you get a small break.

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.
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