First, a spoiler alert. This post is about the last two weeks of my mothers life. If you don't want to read about this then I would suggest stopping now. It is not awful but it is about her death.

My 75 year old mother was a lifetime smoker and drinker. She had Bladder Cancer in 2005 which was resolved by having her bladder removed. Then, in June 2011, she was diagnosed with Tonsillar Cancer. She had a PEG tube installed for eating and did radiation and chemo which did not resolve the problem. Note that although she stopped drinking she did not stop smoking during this time. Initially she did not want to go through with surgery to remove her lymph nodes and jaw and then Fibular Free Flap surgery to rebuild her face but then, about a month after she had a PET scan which showed the tumor localized to her jaw and lymph nodes, she changed her mind.

Two weeks before her Pre-Admission testing we went to the doctor as she was feeling even more weak and in more pain than normal. The doctor found she had a 101 degree fever so she was admitted to MD Anderson Hospital on Friday, January 27 for IV antibiotics, to clear up the fever before surgery.

Monday night, January 30, I came in after to work and found the aide cleaning her up. She had had a minor bleed from her mouth which had mostly stopped. The aide left but the mouth bleed continued, even got worse. She filled a small cup with blood so I gave her a basin to hold under her mouth. It was shift change and I had some issue convincing the day nurse to call the doctor, bleeding continued till I was ready to call 911 from the hospital room. Luckily the night nurse came in, saw what was happening and called the nursing supervisor. She took one look and called the Emergency Response Team. Within minutes we had respiratory techs, a physician, about 12 people in the room. Mom was a little scared but still cognizant of what was going on and in good spirits.

The surgeon said they needed to go in to see if they could stop the bleed. Mom told me to make the decision, so I agreed to the surgery even though she had a DNR. At this point we hoped the tumor was still operable and this would also let the surgeons take their first look at the tumor. The surgery also involved a tracheotomy. The surgeons, that included the senior partner of the Head and Neck Surgical Unit, were not able to stop the bleed, it wasn't coming from one specific area but just from the entire tumor. Unfortunately it was obvious that the tumor had continued to spread, it was now in her sinuses, so was no longer operable.

My sister had driven 4 hours from her home and the two of us stayed with Mom, in her hospital room for two days after she was released from ICU and then in Hospice House, until she passed away. This probably extended her life as we were able to call the nurses when she stared to bleed from her mouth and also to suction her tracheotomy when needed. Because the people who answered to the Call Button in the room were not actually on the floor of the hospital there was no way to make sure all of them knew that Mom was a tracheotomy patient so couldn't say anything when we pressed the button. Very, very frustrating. We were there to answer the "What do you want?" question when we pressed the button, starting with "This is a tracheotomy patient so she cannot talk. Please get the nurse, she is bleeding". Mom continued to have these bleeding episodes both in the hospital and in hospice although never as much as that first night.

The first time the tracheotomy got clogged and she couldn't breath was quite terrifying for all of us until the nurse got the suction kit out and assembled, and suctioned out the blood and phlegm. Soon my sister and I became quite adept at suctioning the stuff at the top of the tracheotomy or that Mom had coughed out, we left any internal suctioning to the nurses.

Transfer to Hospice House was very easy. We are blessed to have Hospice of the Comforter here in Central Florida. They were building their own 18 bed inpatient facility when my Dad was in Hospice a few years ago. The rooms are like a nice bedroom, big TV, chair that makes into a bed, another chair and desk. Initially the thought was that Mom would come home to our house which we were ready to do. My husband was clearing out our back bedroom for her. But thank goodness the Hospice Nurse at the hospital suggested transferring Mom to Hospice House, just for the weekend, so we could get prepared. I don't know if she saw something we didn't or just wanted to give us a couple extra days to prepare.

The transfer happened on Friday, February 3. Mom was in considerable pain but still mentally aware of what was happening. She was extremely frustrated because she could not talk. The hospice nurses were wonderful, they spoke to her like a real person, explained what they were doing, took time to try and understand what she was saying and to read what she wrote down for them. They also kept us advised as what was going on.

I went home Friday night but turned around as soon as I got home as Mom had started bleeding again. Between my sister and I one of us was awake with Mom the entire time. We helped the nurses care for Mom by doing the suctioning and advising when she was showing signs of pain or discomfort. Mom was not given any food or water, only a little ice to suck on initially, once she was admitted to hospice. That did not seem to bother her. We kept her mouth moist with gauze dipped in water. On Sunday, when it was pretty obvious she was not going to really recover, I asked the Social Worker if they were still planning on transferring her to our home on Monday. I was prepared for it as I knew that hospice beds are hard to get. She was so nice she said "No, you are stuck with us" and gave me a hug. Thank God again for hospice.

The end, which was 5:20am on Thursday, February 9, was very peaceful. Mom had not really been awake for days. I am not sure what she was waiting for, both my sister and I had talked to her the whole time, told her she was free to go and be free from pain. She had said something earlier in the week about watching the Superbowl which we did so that wasn't it.

Mom's breathing had been getting shallower over the last 12 hours. The nurse came in to give her scheduled pain medication and left. I realized her breaths were getting farther apart, first about 10 seconds, then 20 seconds, so I woke my sister. She took a few more breaths over the next 4-5 minutes and then stopped breathing altogether. We waited for a while and then got the nurse.

I believe Mom lived much longer because my sister and I were there to care for her. Seeing as how she couldn't speak she would have probably strangled from the new tracheotomy either in the hospital or in hospice. Not a good way to go at all. This was certainly the hardest thing I have ever done but I cannot imagine having done anything else. My sister and I, who are fairly close, became even closer. My husband was wonderful, bringing in food for us and keeping the critters at home fed. My boss, who had something similar happen to his mother, was also wonderful and allowed me the time off I needed. And I again wanted to thank all of you who take the time to update this board as it was the only resource I found to help me through this entire time, from when Mom was first diagnosed to the last stage of her illness.

Thank you for your post and sharing the journey with us. I agree hospice is a wonderful help for the patient and for us the caregivers. No matter what, the grief of losing a parent is hard. But you and your sister and family did the best for your mom and I believe she was aware of your love. Take care of yourself these next months as you adjust to life without her.

thank you for sharing your mom's journey. You and your sister did an awesome job making sure that she got what she needed, and I agree, the outcome likely would have been sooner without your diligence.

I pray you have peace, and rest.

Christine

I'm so sorry for your loss but take comfort knowing your mom is out of pain and in a better place. I lost my 75 year old mom 4 years ago to pancreatic cancer. She died at home on hospice, her final wish. No one can understand how horrible and gut wrenching it is to watch someone you love so much suffer and die from cancer. My mom had nothing to eat or drink the last two weeks of her life and still hung on. Dying from pancreatic cancer is so painful. My sister never left her side the entire two weeks. My sister and I are also very close but this made us a lot closer. My parents were very happily married for 56 years and we kept telling her it was ago to go but we think she held on for him.

It's hard to imagine right now but eventually your good memories will outshine the sad last days of your mom's life. Hugs

Thanks all.

Your mother had wonderful caregivers in you and your sister. You did a very good job of taking loving care of her. You both are to be commended for stepping up and doing everything you could for her. Not all children are able to stay by their parents side 24/7. Not all children are willing to provide medical care to their parents. It must have been very hard for both you and your sister.

Thank you for taking the time to write this out. Im sure it will make things alittle easier for others going thru similar situations.