My mom is not doing well

Thanks for the hugs, prayers, good wishes and positive thoughts. They do help and we’ve needed them. The past few days have been hard.

It started with our first overnight nursing visit (from the government sponsored hospice) on Thursday night. The nurse fell asleep and didn’t hear mom calling her. Long story short, mom pressed her call button and staff from the residence responded, woke up the duty nurse etc. Then she fell asleep again and was woken up by the relief nurse at 7 a.m. Given that mom had just had a bad fall, this was not a good beginning experience for mom or for us. The most unbelievable part of all was that they tried to send the same nurse!!! the following night. As a result, we are now working with family members and and private nursing to cover mom’s 24/7 care.

The government nurses mom has during the day are fantastic and while I am sure it was an anomoly, we are not comfortable taking any chances and also mom is happier having people she knows stay with her through the night. Mom has also expressed such a strong desire to be at home that we are trying so hard to make it happen for her. She realizes we may need to move to hospice at some point but for now, we are all focussed on trying to keep her home.

I went to see mom on Saturday with my daughter who gave oma her knitted comfort square (which due to time is more of a rectangle so it’s been christened a “comfort patch”.) Mom just loved it and was so proud of it and her grandaughter. She showed it to everyone who came that day and always said “Very good for a first attempt at knitting.” It was very sweet and I got a huge kick out of watching her. She made me tie it to the bed railing so it won’t get lost and she can have it near her.

Saturday was a pretty good day. Mom still managed to eat some – not alot though. Good friends came by for a visit which mom enjoyed as well. She was quite tired when I left but her spirits were good.

Sunday was a different story. She was nauseous for the better part of the day and vomitted about 6 or 7 times. She also did not feel like eating and was leary of her pain pills because of the vomiting.

Today she was flat out exhausted when I arrived and it was only 9 a.m. we talked about pain and the need to use stronger medications than tylenol. Mom didn’t fight me at all which was clear sign to me that it was time to move to the pump. For the first time, I wasn’t able to coax a smile or a laugh out of her.

When her nurse arrived, mom did put up a half-spirited fight about the pain pump but you could tell that she had had enough. The pump arrived about half past 5 and within an hour of being hooked up, she was sleeping deeply. We think now that she hasn’t been sleeping very well and that her pain was worse than we thought (we knew she was holding back but it seemed so important to her).

Not sure what tomorrow will bring but I am hoping with her pain being managed, she might enjoy a few more good moments.

I have been reading Marjorie Cole’s book to her. I am certainly enjoying it and I think mom is too (was hard to tell today).

I am amazed at how peaceful mom seems given everything that is going on. It seems strange to say that she seem peaceful given that it was a pretty intense day but truly she does seem to be quite serene.

I had planned on going into work tomorrow to clean a few projects up but I think I will do that from home and go see mom instead of waiting until Wednesday.

I read an excerpt from a newly published book today in a magazine. The book is called “the heart does break” and it’s a daughter’s account of her mom’s fight against cancer and her death (just what I need to read while on the treadmill). At one point, the mom asks one of her doctor’s what she will die from and he responds “Weakness. At some point, your body will just run out of room.” I think of mom with her tumors and ascities, etc. and how weak she is and I think he (the doctor) is right.

Sorry if this is morose and sad but I am feeling both right now. Thanks for the freedom to ramble…

Ok – so I make it through the day and come here and get all teary. Thanks all for the support and kindness – it really helps.

Lainy you are right – my mom is fabulous. Gavin, we had a lovely day, filled with memories and good thoughts. Janet, I am taking comfort in the fact that mom may be able to go peacefully. I told her about Marjorie’s book today and promised we would read it even if I thought she was sleeping. She did tell me that she often hears us when we think she is sleeping so Marjorie’s book will be wonderful for us both. Marion, I am so grateful that mom seems to be relatively pain-free so far. It is a miracle from what I have read hear and I take it as the blessing that it is. I am also so lucky in that I have wonderful sisters and brothers as well as caregivers who walk this journey with me, and more importantly, with my mom.

We had a lovely visit today. Mom was very good this morning. She sat at the table for breakfast (she is SOOOOO determined) for about 45 minutes and was really doing well. When she got back to bed, she was very tired so time for a foot rub and a good snooze. My siblings and I have noticed that mom sleeps much better when we are in her room with her. So i just sat with her and answered emails while she slept.

I’ve been reading a book called “Final Gifts” and it talks a lot about how people who are very ill communicate. It has some interesting suggestions about introducing topics that go beyond the current time and can really bring people around to talking by focusing on what they love.

When Mom woke up I asked her about the house I grew up in. It was an old farmhouse in the middle of a big suburb of Toronto. My parents bought it when I was two and my oldest sister was 14 (there are 6 of us) and it needed a massive reno (my dad was an architect). The thing is they had just built a brand new house not far from this old house. Mom said they had always planned on buying an old place but when they walked into what became our house, they knew it was their home. My mom said, and I absolutely agree, that the house was our true family home. We talked for a long long time about the house and our many wonderful and sad memories there.

So – day by day right? I am really looking forward to taking my 8 year old to see her on Saturday so she can give Oma the “comfort square” that she has been knitting (she is working very hard and I know mom won’t see that the square looks more like a lopsided rectangle.

Thanks again CC Family