My Mom died in my arms, at our home, on Sunday morning, October 6, 2013.

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Two weeks ago today my mom was alive - two weeks ago today she took her first breath in Heaven. I have been her 24/7, at-home, live-in daughter/caregiver since she had a massive stroke in 2008. Despite what family, friends, and medical "professionals" said and believed throughout all this time - my mom not only survived, but lived life fully. Although she needed total care (could not stand) and we used a Hoyer and a wheelchair - we got out and explored life! We got a membership years ago at our local, beautiful ZOO and ventured there as much as once a week via the RTA Paratransit service. We took two college classes together - one on Italian Language (to be able to speak Italian during our visit to Italy) and the other an Art Appreciation college course. We even took a Watercolor Art Course at our local Museum of Art. Last October I bartered (writing services for a free wheelchair-accessible van for a week) and did a road trip 3 hours a way with my sister, mom, and my mom's first great-grandchild; we picked up my 92 year old uncle and his wheelchair and went to the Columbus Zoo and out to eat. My mom was a beautiful woman - inside and out. And, although I often looked like I hadn't brushed my hair - ever - and perhaps slept in my clothes - my mom was always clean, smelled great, and sported beautiful, sharp, and new clothes. We went everywhere together and did everything together. In May, we went back to the hospital (again) for an "exploratory" surgery to see why my mom had this recurrent abscess in her right lower abdomen area for over a year. 10 minutes later the surgeon (who said HE never wants to live past 80) said it was inoperable and there was nothing we could do. 24 hours later my mom aspirated in the hospital, got pneumonia, and was transferred to the ICU after my many tears and pleading with the doctors. They put her on a ventilator - of which they could not wean her off of for 3 weeks. My sister (who had come to town) and my brother (on the west coast) had said to "pull the plug" and let her go. May was an awful month. I felt like everybody just wrote my mom off. Even my siblings were ok with just letting her go - and then they would go back to their lives with their families in different states. I was vacillating between agreeing with them and doing what my gut and heart told me to do - let her get a trach. My sister was grossed out about the trach and refused to be there when then did it. The next day, my mom and I were transferred to a long-term facility for 30 days that specialized in trach care. Within just a few days - she was doing awesome ! Talking with the cap on, etc. Before we came back home, I transferred our living room into a "master suite" so we could have the big front window (covered with beautiful stained-glass pieces I had bought over the years). We came home at the end of June - with a trach, a PEG, a draining wound area from previous JP locations, etc. My mom and I continued to GET UP and GET OUT - we went to the zoo once a week - still. Though now we had oxygen tanks, a trach suctioning machine, and various other supplies and equipment in tow, I didn't care - I was with my mom. At the end of July I scheduled a hair and nail appointment for her at our favorite beauty shop. As we were leaving the beauty shop and I was maneuvering her power wheelchair out of the tight space to get to the back exit with the RTA Paratransit would pick us up - my mom's right elbow (her left arm was affected by the stroke) HIT THE WALL. As soon as we got home - I called the ambulance. It was broken. And broken bad. The arm that she used to play Wii, to paint, to play the piano, to hug me, to drink, to scratch her nose, etc. etc. etc. was now broken. Although she could move her hand and wrist - the arm was broke. It was set in two different casts over the course of 2 months. A nightmare dealing with (and getting to) those appointments and doctors/specialists. I honestly don't know why 90% of the people in healthcare ARE in that field. I always HATED going to the hospital because most everyone on our life's path was so incompetent, uncaring, in a hurry, etc. etc. etc. Yesterday morning my sister left to go back to Virginia. She wanted me to come with her - but I wasn't up for it. All the family came in for the services - which would have been awesome if they came in WHILE SHE WAS ALIVE. Since I had honestly NEVER planned to be alive after my mom died - I was going to go with her and had never changed my mind from that thought all the years I took care of her and was with her - up until just about 10 days before she died I started thinking that maybe I could somehow leave a beautiful legacy for her and my dad. But by living my life all these years AS IF I would not be here after my mom died - and now being here - is too much for me. What keeps me going in this very moment? What keeps me going right now? In this very moment? The thought that I can always kill myself tomorrow.

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I am so sorry, your beautiful, loving, mother and best friend, what a wonderful legacy. I lost my mom almost two years ago, and she too was my best friend, there was no one in the world like her. I went to grief counseling for a year, it helped me get through the worst of it. But, there are still many days I miss her so much. My mom has sent me beautiful signs that she is now in heaven, I tear up as I write this. Recently, the thought has occurred to me that my mom would want me to be happy. She always wanted the best for me. I know your mom would want you to get through this grief and pain, and be happy too. Please be ok, don't hurt yourself. My heart breaks for you. You took beautiful care of your mother! I hope this helps a little bit. Love, Teresa
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Monday, no one can take away your pain. You will always know that you provided the best care possible for your mom. That is something no one can take away from you. She'll always be with you in your heart. As time goes on, I believe you'll be surprised at how much you feel her presence with you daily. Grief will come in waves and you'll get through it. Celebrate her life in any way that comforts you. Hold on to her memory but let go of pain as you are able. If you sink too deeply into depression, please seek help from a spiritual adviser or a professional grief counselor. And do let us know how you are doing.
Blessings,
Carol
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Monday, as I read your post I was thinking how lucky your mom was to have you by her side for the last 5 years. Had you not been there what would her life have been like. I also know that you are the loving caring person you are because of your mom and dad, they did an incredible job as your parents and brought you up to be the kind loving person you are. All I can think of now is all the elderly in nursing homes or who are house bound who have no one. I believe your mom and dad would want you to share your love and compassion with those who have no one. What a legacy to your parents that would be and it would make them so happy that you shared your gift with others. Its so hard when we lose a loved one, someone we have spent so much of our lives with, I lost my dad 2 years ago and thought I would never recover, I hated it when people would say treasure your memories because they will bring you comfort, all I could think at the time was how will that help, thinking about all that we had done together will break my heart even more than it is now but I have to tell you, the memories do help, I can now think of my dad and smile and even laugh at some of the memories. I am so thinkful for those memories and will forever hold them close to my heart. I don't know if this would help you but it has helped me so much, when my dad was alive I saw him every day and we would talk about everything and anything. When he passed away I missed those conversations so much so shortly after he died I started writing a journal, every day I write him a note, some days its a long note, other days its just a short note saying I love you. Writing these notes has helped me because it keeps my dad close to me and we are still sharing life stories. I miss him every day and do have days where the grief is overwhelming but I know my dad would want me to carry on and live my life so for him that is what I am doing. Please give yourself some time and reach out to others. Visit the zoo and while there think about how much joy yoru mom got from the weekly visits with you.
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Dear Monday: What a lovely caring daughter you are and have been for all these years. Please remove the thought of hurting yourself from you mind as you have so much to teach the rest of us. When I read your post I was so touched by everything that you did with your mother. I am in awe of you!!

There are so many times when we have parents that have physical or mental illnesses that we think life is basically over and we are caught up in the hum drum of just living, putting one foot in front of the other. We have lost sight of what is actually possible to do.... you however NEVER lost sight of what could be done to give your Mom and yourself pleasure no matter what the circumstances. YOU ARE AMAZING AND I APPLAUD YOU!!!!

I think you do have a legacy to live.... you need to align yourself with an organization where you can provide love, hope and inspiration to others by what you have already lived! In California the Alzheimer's Association put on seminars where there were speakers and vendors, you would be wonderful speaking to others about the possibilities of what they could do with their parents or patients. Just because they are ill, does not mean they cannot participate in something that might be fun for them. Write a book about your Mom and what a wonderful woman she was and about her illness and how you approached her illness and would never give up on her. Stay involved in this site, there are so many times that we as caregivers become so tired and worn out and we could use some uplifting insight from someone like you!

YOU HAVE WAY TOO MUCH TO GIVE TO EVER THINK ABOUT DYING! NOW IS NOT YOUR TIME TO GO, BUT TO SHINE! YOU WERE A BLESSING TO YOUR MOM AND NOW YOU CAN BE THE SAME TO SO MANY MORE!!!

You will need and want time to grieve and I would wholeheartedly say you need to see a counselor as they can help sooo much! If I were you I would take time and go stay with my siblings for a while, relax and get your bearings, make some plans and contact some organizations.

You are such an amazing woman! Thank you so much for sharing your Mom's story with us and helping me to realize there are a world of possibilities out there to do with my Mom and cleaning the house, well it can wait!

Thank You, Thank You, Thank You!
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Hi Monday, I’m sorry about your mom. It sounds like you loved her very much and did your best to help her live her life to the fullest – even when she ended up with the trache, oxygen, and suction machine. My mom had Alzh for about 24 years. She was bedridden for about 13 years (?). And she passed away this March. During the long mass of intention before her burial, my mom’s siblings and spouses came. I remembered thinking that it would have been nicer if they had visited mom while she was alive. I remember as a child how mom tried to please her siblings. So, I know what you mean about how it would have been awesome if your family came while your mom was alive…

I even understand what you mean about Why you have not killed yourself. For years, since I was in elementary age (about 37 years ago), I always had suicidal thoughts. I knew that if I could no longer handle life anymore, I will kill myself. I was not afraid of dying. It was something that I Longed for. I went to therapy. The therapist knew that I was suicidal and refused to end our session until I promised that I would call 911 if I was going to do it. I lied and said yes. Instead, when I finally decided to carry out my plan, I came her to Agingcare and asked for help. And I got it.

The guilt you feel that you’re still alive today when you should have died with your mom… Perhaps you can tell yourself, over and over, that you Will One Day join your mom – when It’s Time. I think, deep down in your guts, you know that it’s not yet time. Perhaps your mom, out of love for you and all you’ve done for her, wants you now to live for YOU. And you feel her thoughts? Please hang on as each day goes by. Maybe one day, you will wake up and Know what it is that you must still do here in this world. I am soooo sorry!!! {{HUGS}}
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Monday, your mom is still with you. Take time to feel her presence in your life. Now she's there to thank you for all of the care and to encourage you along the way. Her memory may emotionally paralyze you for a time. Just take a deep breath and let the grief soak in. Experience it and then resolve to move forward, even if it’s just to make a cup of coffee for yourself.

I feel my parents daily - not in a sad way , but knowing that their spirit, in whatever form it exists, lives on. Your parents live on through you. Nothing would distress them more than you dying before them, which thankfully didn't happen. Nothing - I mean nothing - can be worse than losing a child at any age.
Now your job is to remember that they are with you and you can, as you say, leave a beautiful legacy by carrying their spirits into the future. If need be, just live in their name.

Spiritual leaders and professional grief counselors can be enormously helpful so please make use of these resources. However, as mentioned in the previous comments, you will put one foot in front of the other, just keep breathing, and move forward one day at a time.

While this may seem like an insult to you now, I would suggest that when you can, you sit down and write a gratitude list. You had many years to show your devotion to your mom and let her know how grateful you were for her. That's number one of your gratitude list. Next, whatever your beliefs spiritually, you do know that she is no longer suffering with a disintegrating body. Even though it may not seem possible now, you'll find other things to be grateful for as time goes by.

You'll have moments when grief nearly overwhelms you. I remember, two years after my mother died, I was just walking down a hallway at work and suddenly had this enormous feeling of grief. It was short lived and I was able to move on, but expect those moments to sneak up on you. You are strong and you’ll deal with them.

Everyone grieves differently. This is a hard journey. But you'll get through and make your parents proud as you go into the future.

Please keep coming back to this site to talk to others of us who've lost beloved parents. We do understand.

Blessings,
Carol
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Monday so sorry for your loss, I agree with solegiver your mum would want you to be happy live your life to the fullest as you said she did.
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Monday, what you wrote makes me see that you are a wonderful person. I would bet your mother wants you to carry on in this life to continue all the things you love to do, and did with her, and not rob this world of your presence. :)
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Monday, I feel the pain in your words! You have so selflessly devoted yourself for 5 years, that is indeed something to be proud of. You spoke of leaving a legacy , now the task is to figure our where your gifts would be best used. Perhaps helping out in a NH or maybe a docent at the zoo, something that would bring you JOY! Life is out there just waiting for you to grab hold. I think the suggestion of finding a grief group is a good one. Many FH's have them or can refer you to a free one. Please do not make a permanent decision based on the painful temporary stage that you are in now. I will pray for you and wish you peace and a glimpse of a beautiful life to come. Please keep us posted, Hugs!
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Monday, it is obvious that you have a wonderful gift of caring. What you did for your mom is terrific, and way beyond what most people feel capable of doing. Do you have medical training, or were you just able to jump right in and learn what you needed to do? You gave your mom a quality of life that no one else would have been able to do.

Give yourself some time to remember and grieve. As JessieBelle said, the world that you helped your mom to enjoy is still out there. When you are feeling stronger, consider sharing your gift with other people who need the caring that you can give. It would be a way to honor your mom, and bring such joy to others. There are people in care facilities who rarely even have a visitor, let alone someone who is so capable and caring. They would surely appreciate someone like you.
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