My many faces

Discussion in 'Life After Caregiving' started by Missy's banks, Jul 23, 2017.

  1. Missy's banks

    Missy's banks Member

    My momma was diagnosed with colorectal cancer in October of 2015. We got in touch with cancer treatment center of America the same day. They made arrangements to see her within a week. My aunt went with her for the first trip because she had previous experience with this kind of thing with her brother. They were there about ten days. She found out she was stage 4 cancer had matastisized to her lungs. They came up with a game plan so began the journey. She had to fly to Chicago every two weeks for chemo. Me and my aunt took turns going with her. They paid for my momma's plain ticket but she had to buy the caregiver ticket herself. When she returned after her first treatment she was so sick it was terrible. I'd never seen my momma that sick before. The next time was my turn to go with her so I had her start taking her nausea meds a couple days before her treatment,made sure she ate and took her pain medication when the pain would first begin. She didn't even throw up one time and wasn't suffering from a lot of pain. She was tired and didn't have an appetite so on my next turn to go I told her care management team and they gave her vitamins and maranol to help with these issues. Her pain began to increase by the time it was my turn again so I discussed it with her pain management team and they started her on another pain medication and raised the dosage of her other one and it began to work. I got her one of those weekly pill boxes and kept it up on all her medication. I would ask her periodically if she was in pain and if so what level and give her medicine according to her answer. I was keeping her out of pain without keeping her doped up. Making sure she was eating. I became her main caregiver. She was also my neighbor and I didn't have children so I guess everyone thought it just made sense. I am however married to the same man for almost 20 years at that time. He had a full time job and we had 4 dogs that had to be taken care of so on my trips he was on his own. My momma ended up wanting one of the dogs we had so I gave her one of the ones I had rescued from my brother. They were an awesome match but on my turns my husband took care of the dog. After a few months the DR. decided that my momma needed radiation so she had to be in Chicago for three weeks and I decided to be the one that stayed with her during that time due to the fact she seemed to do better with me than my aunt. I later found out my aunt wasn't making sure she took her medication on time and took it everyday and also eating enough. I also wanted to spend every single moment I could and make as many memories as possible with my momma. I'm so thankful I did. We stayed at the same hotel every time we were in Chicago so we made a lot of connections with a lot of people. We became very close friends with our shuttle bus driver and eventually both of them. These people became like another family to us. After a while we would find out one of our Chicago family had lost their battle with cancer and we would grieve for their families and also be saddened ourselves. When my momma started losing her hair me her my aunt and my sister went to visit my moms niece which was also her best friend and a beautician and she had her shave her head which was way harder on my momma than she expected but she got through it and eventually had me shave it completely bald. I told her she had the perfect shaped head to pull off the look. I was amazed at how perfect her head was shaped. Eventually she got a wig given by the hospital and it was beautiful on her. She got a red one cause she said she always wanted to be a redhead. Me and my sister also got her a lot of really cute and stylish hats and other head wear. Some for cold weather and some for warm weather. It gets so freaking cold in Chicago we had no idea how different the cold was compared to the weather at home. I mean crazy cold. When they did another scan my aunt didn't take notes or tell us anything else that the doctors were saying so I learned to read her medical tests and blood work for myself. At first the tumor was shrinking and so was the spots on her lungs. When the time came a few months later for another scan the chemo had stopped working and they found spots on her liver. They changed the chemo and continued treatment. She had to miss some due to blood clots and inability to travel due to weather. Still I was taking turns with my aunt on the trips. There were a few ER trips due to painful back spasms. The first time I took her for that they gave her a cocktail of meds that worked and I could keep her pain under control and her out of the ER for long periods of time between the unbearable back spasms. When I did have to take her back I would tell them what meds they had given her in the past that worked the best every time. Most of the time they would not listen until they had given her at least three pain shots with no results and then they would give her the other two meds that completed the cocktail. After a while if I had to take her I'd tell them about the cocktail and to look at her records and they would see it worked every time so they finally started listening to me. After the chemo changed the spasms stopped. Eventually she would have to be admitted for pain every great once in a while but mostly I could keep her out of pain myself. At some point it got hard for her to urinate so they had her doing self cathing which she couldn't do for herself so I had to learn to do that and she also lost control of her bowles. In this time I ended up getting sick and put in the hospital two weeks the first time and ten days the second time all within two months. I would start throwing up and get dehydrated and have to go to the hospital and end up being admitting. During that time I got behind on reading my moms paper work from ER visits and from blood work and scans. After a while I read the paper work on her and realized two of the times she was admitted through the ER she really needed a blood transfusion and no one said a word about it. On our last trip to Chicago they seen her blood work and gave her a transfusion because she was so weak and tired because she was missing half of her blood. I think by then it was too late. We were told in Chicago the chemo was not working anymore and recommended she discontinued them. The tumor had grown and the lung spots had grown and her liver was covered. One morning she called me because her side was hurting so bad she needed to go to the hospital. I drove her there myself. She was talking to me she was just in pain. That ER DR. ran some tests and decided he wanted to do another scan. For some reason I really trusted him so I said do it. He said he didn't like what he seen but it might be nothing he wanted to wait for another DR to look at it and get his opinion. A while later after they had given her the cocktail and she was no longer in pain. The other DR informed me the cancer had eaten through the wall of her colon and caused an abscess that they were unable to get to without surgery and antibiotics would not work unless they got rid of the abscess. I told him she would never survive a surgery she was so small and weak. He agreed. I told him she would not want to die on an operating table. I was alone at the hospital with her. Keep in mind this is my momma my best friend she had become my world. My everything for almost two years now. I had stopped my own life and she became my life. She was my best friend before she got sick. You didn't see one of us without the other. Together every single day if possible. If not together everyday then we had to talk everyday. They decided to admit her for the pain. Out of nowhere one of my little cousins showed up at the hospital so I was no longer alone. God had sent me an angel. A life line. I called my family to tell them what was going on. She woke up later that day and I told her what the DR said she understood. She said she wanted a milk shake so my sister and I went to get her one. Before we left We kissed her and hugged her and told her we loved her. She told me I love you too baby girl. That was the last time I heard my momma's voice. I called in hospice later that night and made arrangements for her to go home. They were having a problem finding a strong enough liquid pain medication for her because she couldn't take morphine. I finally told them we wanted to take her home so I would just crush up her pills and use the liquid adavant and put it in a child syringe and give it to her like that and they also had her using fyntinal patches. Hospice is not what you see on tv. All they did was supply the equipment and medication. I was still the one that administered the medication. All they did was traumatized me by telling me how her breathing would get harder and I would see it start in her stomach and eventually she would pretty much be struggling for air and not be able to get it and she would die. I told them I'd kill her myself before I let that happen. And they had me call them when she was gone and they called the coroner. In my opinion hospice is not what they portray themselves to be. That is my story as a caregiver for my momma.
  2. Dear Missy,
    You certainly have had a tough time taking care of your Momma. I am sure that she appreciated how careful you were to see that she got the very best care each time she needed it. I have been a caregiver for both my sister and my Mom, and I had to learn to speak out for them and supply information, plus trying to ask the right questions of all the medical people, just as you did. Caregiving is a huge job. I was lucky enough to find a caregiver's support group which has been a great help and a great source of information and ideas about taking care of someone else and also taking care of yourself.

    My sister fought Cancer for nine years. She had breast cancer that metastasized to her liver, bones and eventually her brain. She did not live in the same state as I do, so I made many trips back and forth to care for her after various surgeries and treatments. It was so hard to see her getting worse and worse each time I saw her. We talked on the phone just about every day, and had been very close since we were children. She died last November, and I miss her every single day.

    I am sorry to hear that your experience with hospice care such a poor one. My sister had both home and residential hospice. I was responsible for her medications just as you were. But if I had any doubts or questions, all that I had to do was pick up the phone and I could speak with her hospice care nurse. If I needed anything or had concerns, a nurse would come to her house to check on her. Her medications were carefully monitored and changed as needed to keep her as comfortable as possible. Eventually she needed to go to a residential hospice where her care was absolutely wonderful. Their main concern was to keep her as comfortable, and as peaceful as possible. I have nothing but great things to say about the care she received at the end of her life.
    My Mom is almost 91. She was in assisted living for a number of years, but eventually she developed dementia and her health also became very poor. She is now in a nursing home and receives hospice care from an agency that comes to her in the nursing home. I am very pleased with her hospice care as well.

    Grieving is a very hard path to walk, and I know that you must miss your Momma terribly. I an so very sorry for your loss. I hope that even though your grief is great, you will also find some ways to take care of yourself. You have done your best to be a caregiver to your Momma. Now you must try to give some of that care to yourself. You have definitely earned it.
    Cynthia Louise
    griefic likes this.
  3. Missy's banks

    Missy's banks Member

    I'm trying my hardest. Thank you so much for the kind words. I needed that.
    Joan Puryear and griefic like this.
  4. Joan Puryear

    Joan Puryear New Member

    I helped take care of my Mother. She died August 14th. My family was very close, around her. Now I couldn't get them together for Thanksgiving. And one of 4 will have a 1 hour lunch today. No plans accepted for Christmas! I don't know how to go on at all! and now the rest of my family is not there for me. I can't be all alone for ever! But that's the way it's going! I need help!!
  5. griefic

    griefic Administrator Staff Member

    Hi Joan, I'm so sorry to hear of the challenges that continue for you in this loss. Unfortunately our families aren't always there for us in the way we would expect or hope. While it would be ideal to find support from the people who are already in our life, I don't think it always happens that way for many. Sometimes we have to make our own way, find our own "family"...even just one friend who we can talk to and trust. Making new friends and meeting people isn't easy at any point in life, and grief can feel like the cement shoes that keep us stuck in one place - unable to make a move forward. But the only way out is to take that step, however hard it may be. Your healing and your happiness is your responsibility (as hard a fact as that is, it's the truth) and only you can make a difference in how you feel. But remember there is freedom in that, and some control. It means you deciding how you want to do this, and what is going to work best for you as you move forward. Try getting out if you can, find someone in need, and find a way to help. Sometimes getting out of our own heads and and our own problems can be one of the most significant ways to heal ourselves. I continue to wish you all the best...
  6. Dezso Sarkozi

    Dezso Sarkozi New Member

    My wife first encounter with cancer was in 2010 that cancer was (Type B lymphoma) beaten in year with good healt care and positive thinking mind you I was so scared when I heard the bad news I was ready ready to run a way then my question was to my self where should I run too ? We picked up the pieces and figth and figth the first chemo cleared tumor then the chemo and radiations was reduced to half of the planned dosage. We were happy to gether we asked one to help In was the one whom taken care of evrting Her friend come to help us for while but she can see it we did not need to be helpt. Our daughter droped in some time she did not offered us real help we yust did not needed to her help us.

    The following five years was our best she finally retired from work she loved deeply me my self I decided enough is enough running after money so I did cut back on work as low as possible So on we been to gether all day long gardening shoping travelling (I guess we could not enough of each other) She loved art therefore we visited most of the major museums in the word (For me museums did not mean to much, the beauty was in it to see her being soking up the wonders of and creations of the human mind's ) In 2016 we completed her backet list we and travelled to Amsterdam to see Rembrandt She was happy then I could not imagine before. After we come back home we vent to see our oncologists for routine check up. Then cold blast hit our heart she was suspected may have lung cancer. That was in September 2016 in February 2017 final word come done she has a lung cancer.

    She went trough growling chemo and radiation treatment eventually cancer took her a way from me in December 2017 I was taking care of her untill her last breath in our home people asked me why don't i ask for more help ? You over 70 years old My answer was The age is don'tcount the will is . Mind you CCAC was giving us much help as we needed Evernsinc she left I have a big hole in my heart try to fill that hole with her memory and love of my grand sons I go to her grave every morning with red coronation in my hand and some time in the afternoon talk to her about how I'm doing and how much I miss her after 51 years to gether. I think at the very end we paying the for unconditional love we given and received with grief but is worth grieving because she is in my heart for ever and hope in will follow her soon
  7. griefic

    griefic Administrator Staff Member

    Dezso, thank you for sharing your story. I am so sorry for your loss. You have shared so many beautiful thoughts about love and grief, and you're right--- it's an unfortunate truth that the two will always become intertwined at some point in our life.
    I have worked with many grievers and understand well the language they use to express the depth of the loss and pain they may be feeling. But it's important that I ask you if you are at risk when you say, "I hope to follow her soon". As I said, many grievers use this type of expression of grief, but please know that if you are in crisis there is help. It can be found 24/7 at https://suicidepreventionlifeline.org, or by calling 1-800-273-8255. I will leave this information here for anyone who may need it. Thank you again for being here with us - I hope we can provide you with the help and support you need. Please take care~
  8. Kels

    Kels New Member

    I’m new to this site, but I just lost my mom almost 2 months ago to pancreatic cancer. She was diagnosed in February of 2015, almost 3 ago to date. I was a sophomore in college and at 20 years old didn’t really know what to do. She had the Whipple procedure and they removed part of her pancreas, stomach, gall bladder, and dueodenum (beginning of small intestines). She had the whipple at the end of April of 2015 and I came home a few weeks later for summer break and took care of her and the house. I also took her to her chemo treatments that summer and at that point she was cancer free. In the winter of 2015/2016 she did 5 weeks of radiation. We had multiple complications through the next year, but treatments were done and the cancer was at bay. In December of 2016 my mom and dad went to Hawaii to celebrate their 30th anniversary early, and it was the vacation of a lifetime they said! Right after they got back we found out mom’s cancer was back in her lungs. I was a senior in college and was working at John Deere at the time. I was coming home most weekends to help my family, and my older brother was in the middle of planning his wedding. My mom had surgery to remove the lung nodule in January of 2017 and she just couldn’t seem to heal from it. Shortly after it was found she had a bowel obstruction to which they reopened her up for and fixed. She healed and I graduated from college! I decided shortly before graduation to go to nursing school, so I had a talk with my great boss and moved home after graduation for nursing school. My mom had retired on disability and I became her full time caregiver while getting my CNA in summer 2017. I ended up not getting a job because my mom was declining and needing more assistance. My mom had many many complications and trips to the ER. She went through many chemos and we were at our last FDA approved one in which I had to unhook her from. I also was giving her daily injections and helping clean her up from accidents on many occasions. On November 4th she was able to see my brother get married. The Saturday after thanksgiving she started having pain and blood in her stools and she had a blood clot in her mesenteric artery killing her bowels. She had emergency surgery and had a slim chance of being okay, but she was...for a few days. She came home a week later and 2 days later on December 4 ended back up in the hospital for the same issue. Her illnesses progressed and she ended up getting another vowel obstruction, had the blood clot in her artery, and her liver was failing. On December 17th my dad was with her and I was with my best friend at home for support and dad called and said we are talking with hospice tomorrow and he wanted me there since I was her main caregiver. So I went on Monday the 18th. About an hour after talking with the social worker about hospice my mom passed away. As her caregiver I have experienced many things my dad, brother, sister in law, and friends don’t understand. I don’t regret at all helping my mom and I would do it again in an heartbeat, but I’m sad for the things I gave up like my job st John Deere, but it helped me find my passion to do nursing. I also feel like I gave up a bit of my college life of being a normal 20-22 year old because I always came home and took care of my mom. Before she passed I spent all day with her and took care of her so after she passed it became a question of what do I do now? 2 weeks after my mom passed was my 23rd birthday and my friends and family did so much to make it special! So since then I started my nursing classes again almost a month after she passed, she passed over our winter break, which I was so grateful for.

    In the midst of all this sadness and emptiness I felt and still feel there are things I’m grateful for though, as stated above. I’m grateful that my mom didn’t have to do hospice, and I’m greatful we didn’t have to go through the hospice process. I’m grateful that my mom passed quickly and wasn’t on a ventilator of any sort and we didn’t have to make the “choice” to turn it off. I’m grateful I was there when she passed (most of the time) even though the day before she told dad she didn’t want me there because my mom saw her mom pass and didn’t want that for me, but as a nurse I was very prepared for what would happen and wasn’t surprised with certain things like my dad was. Mostly I’m grateful for the time I had with my mom, for helping her, and for all the love she gave me and the many things she taught me. Grieving this loss has been a tremendous burden and I have horrible days and I have relatively good days, but at the end of the week what needed done got done, and to me that’s what’s important. It’s ok to have a bad day, as long as I don’t live there.
    griefic likes this.
  9. Mickey47

    Mickey47 New Member

    I am a new member and I wanted to tell my story. It is a story that I have not written yet and I know that it will be hard but I am hoping that it will help me deal with my grief and help others to deal with theirs. I was the caregiver for my grandmother who was born on February 10 1919 and died March 31 2017. I realize that I was very lucky to have her for as long as I did. My grandmother was one of 9 children born by midwife in New York City. Her family was so poor that in the building that she lived in there were 11 families and one bathroom. She said her father was a peddler and by the time she was 16 she was going to school and working 3 jobs to ensure herself and her family would not be hungry. She got married at 19 and had 2 children. My uncle and then my mother. Her and my grandfather worked very hard and eventually they were able to buy a 2 bedroom apartment in Brooklyn which was not an easy task. My mother married my father and my sister was born in 1967 and I was born in 1970. In 1979 I believe my grandparents retired and moved to Florida. In 1983 my grandfather died of alzheimers disease after a very long battle with my grandmother taking the best care of him that anyone ever could. In July of 1990 I got married and in December of 1990 my grandmother had a major hemorragic stroke that NOBODY except myself believed she would survive and my husband and I both agreed that she needed me more than he did and I left my home in Maine to stay in Florida and help my grandmother. Not only did she survive, she got ALL of her mental faculties back and the medical staff were beyond shocked. She was not able to live by herself though and lived in multiple assisted living facilities that provided meals and transportation. Once she was in her assisted living I went back to Maine and shortly thereafter had my 2 children. My son was born January 13, 1992 and my daughter was born March 31, 1993. I was very busy going to college, working and raising my children but visited her as often as I could and felt a bond with her that was so strong that I really can't describe it with words. My uncle had ended up retiring in Florida with his second wife and visited her at her assisted living for 30 minutes per week on Saturdays. One time she fell and EMTs were coming to her apartment and he did not call the hospital to find out what happened to his mother. I started visiting more often in 2014 and I could tell that she was depressed and with a lot of medical issues and I asked her if she wanted to come to Maine and live with myself my husband and my son at the time and she said yes. She had never been to Maine in her life so I was beyond thrilled! She arrived on December 21,2014 and it was the most beautiful Christmas that anyone could have scripted. I had visiting nurses and physical therapists and she got a beautiful new walker and and was walking again. In October of 2016 she had a minor stroke and a GI bleed and was in the hospital. Before that she had gotten a lump and was diagnosed with breast cancer and although she was too old to have surgery the surgeon said that breast cancer in someone her age would not kill her and likely not spread because of her very low level of hormones it would likely not metasticize. But something from her minor stroke did happen and it took me by complete surprise. She pretty much lost her appetite completely and she kept getting aspiration pneumonia. In February of 2017 she was in the hospital with the pneumonia and her and I were faced with a decision on whether to get a GI feeding tube but the Dr was against it because he said she could still aspirate and he did not think she would survive the procedure. She told me that she was tired and I brought her home. I didn't know how long she was going to live and I continued to offer her ensure and any type of food that I thought she would eat and she did eat a little bit but not enough to survive on. When I brought her home we had hospice. They were absolutely wonderful. An RN came every couple of days a personal care attendant came daily. A social work and a wonderful chaplain came. I was so depressed and at times crying uncontrollably and probably would have landed in a psych hospital if it had not been for their support. She died at 4:00 AM on March 31, 2017 my baby's birthday. I was holding her hand and my husband my son and my daughter were all there. We had watched her favorite movie The Wizard of Oz earlier the evening before. I still cant put into words the agony I feel. The void. It is like bone crushing pain. It is coming up on one year and the pain feels like it happened yesterday. I do believe in GOD and I do believe she is in a better place. It is just the most heart wrenching pain that at times feels like my chest is being crushed. I just want to say thank you to the people that make this site possible as it could only help to have a safe place to to vent.
    Meghantree likes this.
  10. Sheila512

    Sheila512 Well-Known Member

    What an amazing testament to the depth of your love for your grandmother. Your children saw what you did and you created a model for them to follow. Family does not abandon family. Bless you with positive memories.
    Meghantree likes this.
  11. paul tinker

    paul tinker Well-Known Member

    Just a sincere second to all that is said here. I will mention that my Seattle north Hospice team really did well. There were the 1;30 am. Calls and they were there. They shored up at 2: AM when Kay had died during rebit care at an SNF. That of course was fro me just be a support at the hardest hour and stayed a good long while. I had a few discussions with the Chaplin and the MSW helped with some billing issues with the SNF. That happened a few times. I am sure each community is different. I had long believed that the terminally ill went o a facility. My mother did but Kay was at home.