christianto

Hi, everyone:

I apologize for going MIA, but things began to accelerate quickly after Christmas. Things with mum remained much the same, into hospital every couple of weeks or so. In mid-January, there was one night in particular where she went from acting normal, to completely delirious in a matter of a few hours, and her temperature soared. Ultimately, she collapsed to the floor unconscious, and was rushed to hospital, where I was told she was dehydrated to the point where they couldn’t get a pressure, and to make “the calls”. Her journey didn’t end there, though, 1 day and several litres of IV fluids and some antibiotics later, and she was a whole new woman.

I wanted to share this particular story, because if you are fighting this monster, or caring for someone that is, dehydration is a major issue. The doctors never offered it, but I lost my temper with them and asked “if you can hydrate her in hospital, why can’t we do this at home?” I found it ridiculous that three times she had been admitted to hospital dehydrated to the point of kidney failure only to be hydrated and sent on her way. There is an option, called hypodermoclysis which is a slow drip of saline subcutaneously. This, most likely prolonged my mother’s life by months, according to our home nurse. After we started hydrating her at home, she was never admitted to hospital again. From January through to mid-March, it was largely uneventful. She was basically “idling”, although her calories and fluid intake were reducing. Unfortunately, she did ultimately lose her battle on Good Friday, at home, in her bed, as she wanted.

Those last two weeks were probably the hardest of my life. She began to act irrationally, whether it was deciding to go outside at 3am in -23°C weather and slipping on ice, to being adamant that she was sitting on the commode chair, when in reality it was a dining room chair (she was SO angry with me when I kept trying to stop her from doing her business there). The physical decline was also drastic, I had to physically pick her up off the bed or couch and into the wheelchair, same on the commode chair, and in the end, remind her how to properly use the washroom facilities. The one incredible thing with this Cancer, at least in her case, was that she was pain free until 7 days before she died. Not once did she ever have pain, except for the occasional sharp pain, that she described “like gas”. I am so thankful for that. The final 3 days were quiet, as she slept constantly and no longer would accept food or water. I had to disconnect the hydration, as her thigh was swelling at the site, as she wasn’t processing it. And then, she slept her way to peace. My only regret, is that I didn’t take advantage of more of the palliative and hospice services. They would have come out and spent overnight so I could rest, but mum didn’t want that, and I listened. It did turn into a 24 hour job the last two weeks. In the end, though, I got to give back to the woman I loved so much, by giving her the best possible care I could, and making sure she got what she wanted.

Thank you so much to this community for providing endless information, support, and kindness. It meant so much to me to not feel alone during this horrible time. If I can be of any help to anyone else out there, please don’t hesitate to write.

-Christian

Thank you all for the replies!

I’m sorry to hear your husband is battling this terrible disease, Blodynbach. It sounds like we are at similar points in this journey. Mum is no longer seeing her oncologist, and is now receiving care from a palliative care team. She has not been any pain, so far, thankfully. I did mention the Dexamethasone to her, but she is not willing to try it. I was on both Prednisone and Dexamethasone earlier this year (sinus and tonsil issues, all better), so she is familiar with the weight gain properties. To say I turned into Elsie the cow is an understatement (almost 50 lbs in a couple of months! yikes!) Sorry, had to joke a little.

Thank you Lainy for the suggestions with the supplement drinks. We have tried that with the fruit to no avail. She is basically limited now to canned soups, and seems to do well with anything with vinegar (salads, bruschetta without bread, etc.). This is so not her, this woman could eat like nobody’s business before.

I’m sorry to say, but I do have some news tonight. This morning, mum seemed to be a bit better from the past 48 hours when she was doing poorly. She actually drank a shake by herself overnight! To say I was elated, was an understatement. Unfortunately, it was short lived. I left the house for a few hours while some family visited her this afternoon, and when I came home, she was feeling warm, so I took her temperature. It was almost 40°C. I was instructed to get her to hospital immediately if her temperature was over 38, so I took her in. She was not pleased with me, and said I was overreacting. By the time we got to the hospital, her temperature had come down and I felt like a proper idiot. About an hour later in hospital, she began to get extremely hot, to the point where sweat was running down her body. They took multiple blood samples, a urine sample, did an ECG. She is also hooked up to a saline IV. She’s been admitted, for which I am grateful. Her hand felt swollen and clammy when I was holding it as I said goodnight, and left her to rest. She said to me, as I went to leave, “you did the right thing bringing me in,” which was wonderful. It’s always a fine line between being paranoid and doing the right thing. I just hope this isn’t a serious infection, or related to her stent or bile duct catheter.

One last thing – a friend of mum’s, who didn’t know mum has been ill called today. Mum has put off calling this friend because her birthday is coming up, and she didn’t want to ruin it. Her friend is now battling breast Cancer, and in chemo. I feel horrible for her, and wish her a successful recovery, but I am glad that mum will now have a friend who she can talk to and will understand, as I have found this community here.

Thank you all so much for being here.

– Christian