Two Months, 56 days or 1,344 hours
Tomorrow marks the 2-month anniversary of Ken’s passing. I haven’t had the strength to write about what happened yet but feel it is time now. Hospice was not there for us toward the end in fact the whole point of hospice seems a mystery to me now. They keep calling me to see how I’m doing, probably to check in and make sure I’m not going to complain about their lack of service. I had to insist that a hospice Doctor see Ken at first because I was told that wouldn’t happen for 3 months. After the Doctor saw Ken he agreed that Ken could benefit from physical therapy to help him use the devices; cane & walker. You have to be assertive with them in order to get what you need. They won’t help you when you need them the most, i.e., with helping to lift your loved one off the floor. I was told when I called the hospice emergency number after Ken fell early in the morning by the nurse that she was 5’2 and she would come but that she didn’t know if she would be able to help. She first asked if I had another family member living with me who could help. I replied that if I did I wouldn’t be calling!
Hospice isn’t set up properly in this country to help care for loved ones in the end stages of life and they rarely understand brain cancer patients, especially GBM. At times, it felt like they were just “checking in”, checking blood pressure, temperature & watching Ken for an hour or so to see if and when he would die. When I really needed their help in the final week of his life of course at night it was always an issue taking the nurse an hour or more to arrive. When the nurse did arrive she asked where his oxygen machine was and that patients with his condition should have one. So, the next day I demanded the equipment and it came in the early evening (suction machine, nebulizer, oxygen concentrator, and oxygen tank). My hospice nurse showed me how to use some of the equipment, stating that “you won’t need to use this at this stage”, which was the suction machine and in fact I did end up having to use that machine that evening. When I called later that night because Ken’s breathing had changed dramatically after I gave him some oral medication the nurse on call was instructed to call my hospice nurse. She called me back & condescendingly told me that she had shown me how to use the machine earlier in the day and did I remember but we did not hook up all the parts to actually use the machine. Then the on call nurse phoned me back to say her supervisor told her that if I didn’t know how to use the equipment that they would send someone out in the morning to evaluate if Ken did indeed need continuous care or not. She also said that she would come out if I wanted her to and she did. When she arrived she admitted that she wouldn’t have been able to instruct me over the phone how to use the equipment and she could see how I would have been confused especially since I wasn’t a nurse and didn’t have any experience.
The next morning I awoke to a phone call from the clinical care coordinator responsible for getting Ken the compassionate use of the CDX-110 medication. I had emailed her the day before that I had wanted to talk. I took the call in the kitchen to not disturb Ken since we were sleeping together in the same bed downstairs. After she hung up I heard a large gasp coming from Ken and I ran to help him. I quickly turned on the oxygen machine and put the tubes in Ken’s nose never having done that before either. I heard another gasp and at that point I believe that Ken passed. I quickly called our neighbor who is a Doctor for advice and realized that everything had changed. I sobbed hugging him for several minutes, looked up at him and he opened his eyes to look at me one last time and then closed them. I felt it was his way of saying to calm down and that everything was going to be okay which gave me the strength to do what I needed to do next.
At that point, I immediately shifted gears and called who I needed to call so that friends and family could come see Ken. He had over 35 visitors that day and I’m so happy that they were able to see him in our home rather than anywhere else.
I went to a therapist yesterday and she told me that watching your loved one die is a trauma and that I’ve been going through trauma for the past two years time. Simply knowing that your loved one has a terminal illness does not make the actual death any easier when it does occur. The pain of losing a loved one will never go away and it should not be ignored.
I’ve kept up with the blog from day one, but never found the words to post.
I watched as my mother suffered and died of cancer. I’ll never forget that final day. It’s a hardship that noone, having not been there, will understand.
I told Kebo I was coming down there to see him shortly after the diagnosis. Sadly, I never made it. Our interests, hobbies, beliefs, etc, practically mirrored each other. As we often say, a brother from another mother.
I think about him every day, and I reckon I always will.
Tina, reading what you have gone through is part of my preparation as we are in final stages after 20 months with my husband’s GBM fight. We will have to have the discussion about hospice with the palliative care doctor we will be seeing soon. Like Ken, my husband has not given up the fight but the reality is that preparation for the inevitable is necessary. You have been through a trauma and I hope you are getting some counselling to help give you the tools to deal with it, not necessarily get over it but to manage it so that daily life becomes easier for you. Your post is now making ask myself questions as to what I would be able to handle. I have 3 children who are supposed to be heading off to university in a few weeks but will be here for their Dad. Thank you again for sharing your journey with so many as it has helped many of us navigate through the same journey.
I’m so sorry that your husband has GBM. If you can keep your children close at this crucial time that would be good because you will need help and support and love all around you. If you ever want to email me or talk my email address is email@example.com.
I have followed this for a long time now….and prayed much for Ken.
Praying for you too Tina that you are strengthened and comforted having endured such a difficult journey with such little support in Ken;s last days.
Praying your memories will be filled with the joy of the good times you had together.
I have been checking your blog to see how you have been doing everyday. I think seeing a therapist is good. I finally made an appointment 2 months after my dad died because I just couldn’t process the last 9 days of his life watching him die. It’s been 6 months and I feel better, but still play those days over and over in my mind. I am so sorry that your experience with hospice was so poor. Our hospice experience was amazing and am so grateful that we had such good nurses. I wish I had words that would make you feel better, and me saying I know how you feel doesn’t help either. But I do think of you (even though we have never met) and hope you find peace and comfort.
You are in the thoughts and prayers of so many, and I hope that they find you and help get you through this awful time.
Peace and love,
I was with both my grandmothers when they passed, and it was hard. But IN NO WAY did I care for them for two years as you did with your beloved Ken! I will pray that you will get better each and every day. I can’t imagine what you must me going through!
Tina, I am so sorry that your experience with hospice was a negative one. I am the one who contacted you about my husband, Joe. Joe has a GBM diagnosed July 25th. I am a nurse and a former hospice nurse. So, as you may know…this horrible nightmare for me began July 25th. Hospice is a wonderful concept of care and obviously the organization that you had was NOT a good one. The nurses, social worker, and spiritual leaders should have been there for you and kept you informed every step. I am sorry… I was given your phone number, and will call you. I am having a difficult time off and on as this is so new to us! My husband is doing as well as can be. Surgery, now radiation and Temador. He is starting to feel the effects. I do look forward to talking with you.
Peace to you,
I hope the saying “time heals all” is true and you are healing and getting more stronger each day!!
My sister, Karen, was diagnosed June 25th with a GBM stage 4. She had surgery on the 25th and just finished 6 weeks radiation and Temador 2 weeks ago. She just had 2 good days in a row so we are excited to see this little bit of positive in her life!! We know she will never have surgery again and will never have radiation again. We are awaiting the next MRI to see if we go down the maintenance path of Temador with 5 days on and 25 days off.
My sister is 58 years young and lost her husband 12 years ago in a car accident and since that day I have been the one she has turned to and leaned on for everything. I remember that day in the hospital when her doctor was discussing her options and threw out that number of months she could expect to have left to live with treatment and without treatment!! I asked him then what I should look for when the end starts because we had no idea she had this horrible tumor until she went to the emergency room with a headache!! In less than 24 hours she was told she had a brain tumor the size of a lemon, it was stage 4, it is terminal, she could never work again (it has affected her eye sight), she could never drive again and she could not live by herself again!!
He told me to look for things she could do the day before that she can’t do today, she will have short term memory loss, she will sleep a lot and one day she will go to sleep and just not wake up. I asked if she would be in pain and he said no that the brain does not feel any pain.
I have tried to be honest with my sister and talk with her often about what the doctor said to expect. I would love to think that it would be as easy as my sister going to sleep and just not waking up but I’m sure it is not!! She is afraid and I don’t have any words to help.
I know it is a lot to ask but when you are able, will you share with us all, that are starting down this dark unknown path, on what to expect when we are faced with the reality that we are going to lose our loved one? I want to be able to honestly tell my sister what she can expect to happen. I also want to prepare myself for what is ahead so I can be that strong person my sister has always had.
In my long hours of research of GBM I always come away feeling exhausted until I found Ken’s blog. It was the 1st time I felt the discussion on the subject was actual and heartfelt. Even though the outcome was what I expected it to be getting there was not. I thank Ken for that. Please take comfort in knowing that he is continuing to help others!!