My mom is not doing well

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

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 :o) 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.

It’s been a few days since I last wrote. Mom has had some set backs. On New Year’s Day, the nurse detected fluid in mom’s lungs. While I know it’s not surprising, I do find each of these advancements do catch me off guard.
Over the past couple of days, mom’s breathing has become noticeably more labored while awake, and more shallow when she sleeps.

She also had a bad fall last night. She was with her caregiver who was behind her. We’re not sure if she feinted or if she stumbled but she went down pretty hard on her knees. She went to hospital (she was in a lot of pain) but is now back home.

We took the time to replace her bed with a proper hopsital bed and special “bubble” mattress that should help her be more comfortable. We also have told mom “no more walker” which was a bit hard for her to take as she is so independent.

On the positive side, she did sit up for noticeably longer this afternoon her her favorite chair and considers herself lucky that no bones broke with her fall.

We have ramped up her care to 24/7 and will be meeting with hospice on Wednesday again.

We’re going to try hard to keep her at home where she wants to be although she does know that hospice might be a better answer.

I will be taking some time off work, starting with a few days this week and then hopefully full time starting next week. I’m not sure how long she has left but I do know I want to be with her and try to help her be at home as long as possible.

Ironically, it’s her sore knees and not CC that have her finally accepting more pain medication that the 2 daily Tylenol 2s she was taking up until now.

Hangin’ in there,

Sharon