My Mom died in my arms, at our home, on Sunday morning, October 6, 2013.
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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Blessings,
Carol
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!
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}}
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
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.
Sometimes the most we can do when we have a serious loss is just keep breathing. I think it would help tremendously if you could talk to a grief counselor. What you are feeling is not unusual. Your old life has died. Your job now is to feel the grief, then to see what direction your life goes from this point. Most of us have an infinite capacity for love -- perhaps it is the light at the end of the tunnel. Just keep breathing and moving and thinking of the things you love. I think you will be glad you did.
If you feel that you are going to harm yourself, go to the emergency room and have them admit you. Sometimes we have to put ourselves on a temporary ventilator to make it through the hard times. Believe me. There is plenty of life left to enjoy. You just have to make it through this tunnel. God is with you.