My mom is not doing well (Page 2 of 2)

Hi Gavin,

Thanks for the wishes and thoughts - we can use them right now, that's for sure.

Mom was pretty good today. Her hip is a bit tender from her fall but otherwise she is doing ok. She still sat up for all her meals today, although now she's in a wheelchair. She is really having a tough time losing all the things that make her feel independent. And we all feel so bad when we take these things away from her. I get a strong sense from her that she is not ready to go.

We are meeting with hospice tomorrow again. Mom would really like to stay at home if possible. Her physician is on board and certainly there are many caregivers and family available so I am hoping this is something we can give her.

In the meantime, we do try to enjoy our time together. My mom is master knitter so today my sister pulled out a sweater my mom had been working on and started sewing it together. She said it was great because mom started telling her stories as she sewed. It inspired me when my 8 year old daughter asked what she could do for her Oma - so she is now knitting her a special "comfort square" which I know my mom will love.

She also still has such a sense of humor, even if it is a little warped. Apparently a nurse gave her sandwich at the hospital yesterday when she learned from mom that she hadn't had breakfast. It was cold as it had just come from the fridge. My mom doesn't like cold food very much so she wrapped it up in a paper towel and told another nurse that someone had just dumped it on her stretcher. The nurse who gave my mom the sandwich overheard my mom just as my sister was coming back to see mom and she (my sister) said "oh i see you are getting to know my mom better". My sister then left to go back to meet mom at home (mom went by ambulance) and apparently the sandwich came too - wrapped in a toxic waste bag ) Mom made us put it in her fridge and won't let us throw it out.

I will be leaving early tomorrow to go spend the day with her and am looking forward to it. I also will be starting my leave from work on Monday so I can spend more time with her.

She continues to be relatively pain-free and is not nauseous as of yet - two big things that we are very grateful for.

Hi Sharon,

I am sending you more good wishes and am keeping you and your mum in my thoughts. Yes your mum will indeed love her comfort square and I am glad that you are enjoying this time with her. That is good to hear that she still has her sense of humour and I hope you can enjoy some laughs together. My dad had his sense of humour all the way through, and like your mums, it was pretty warped as well!

I am glad as well that your mum is relatively pain free and I hope this continues for her.

My thoughts are with you and my very best wishes to you and your mum.

Gavin

Thanks Katie, July and Gavin for the warm wishes and thoughts. Today was a hard day. I went up to see mom and it is amazing the difference a couple of days has made. Now granted, she did have a big fall and a hospital visit in those two days so she is understandably tired.

She now has a hospital bed with a bubble or air mattress (?) which is certainly very comfortable. She actually lay on her right side for the first time in years and said it didn't hurt. And while she has flashes of pain when she moves the wrong way, she is generally still coping with her Tylenol (i figure if you can smile then the pain is tolerable).

We had a visit from hospice today which meant mom had to come to grips with her reality. That and the fact that she is weakening so quickly have finaly made her accept what is coming. She is such a trooper but I did almost lose it when she told me she was trying so hard to be brave. She has reiterated her wishes to stay where she is so we are going to work very hard to keep her at home. So please keep those thoughts and good vibes coming our way.

Her nurse today seems to think that mom is heading toward a coma state based on her bloodwork. I will need to do some more research on this. I did come across some info back in the fall when I we were uncovering the hepatic encephalopathy...

I am looking forward to tomorrow - no planned visits other than her daily nurse visit and family. No doctors, no hospice (don't get me wrong, they are wonderful people). Just me and mom - I am already thinking of things to talk about.

Also I have ordered Marjorie Cole's book - when I saw her remembrance notice on the board, I read it and was intrigued by what Barbara Kingsolver (one of mom's and my favorite authors) said about her. I plan to read it to mom over the coming weeks.

Thanks again for the support and a place to be

Sharon

Sharon...I am also including a link on Wikipedia regarding Marjorie Cole.
http://en.wikipedia.org/wiki/Marjorie_Kowalski_Cole

Hi Sharon,

More good wishes and positive thoughts coming your way. I hope you and your mum are enjoying today and I'm sure that you will have lots to talk about. And you are doing an amazing job in being there beside your mum and I know how much that will mean to your mum.

My best wishes to you both and I am keeping you in my thoughts.

Gavin

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

Sharon,

You are truly inspiring for the rest of us going through this.  You are handling yourself with such grace and love. Your mom must feel so proud of you and feel comforted by your support.

Please know that we are praying for you.

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...

Dear Sharon...I know this is the toughest time for you but for your Mom it is truly wonderful that she is so serene. That is all we can ask and hope for.  A peaceful journey. I have said it before but you sound like a wonderful person and we can see you are the daughter every mother hopes for. Stay strong and know we are thinking of you.

Dear Sharon,

Thank you for your post. A month has passed since I walked the same road that you do now and everything you talk of in your post resonates so strongly with me. Like Walk's dad and your mum, my dad was also very peaceful and it seemed like he had accepted what was happening and was dealing with it in his way.

Please, make no apologies for anything. You have every right to feel how you do and no apologies are ever needed for that. This is a tough time right now and you will experience a wide range of emotions and feelings. You are doing the most amazing job right now in being there for your mum through these days and you being beside her will be of great comfort to your mum.

I am keeping you and your mum in my close thoughts and I wish you both strength, courage and much peace. And I hope very much that the pain pump works for your mum and that you can both enjoy these days as much as possible.

Gavin