Re: My mom is not doing well

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

Re: My mom is not doing well

Hi Sharon,

Thanks for the update on your mum. Your mum certainly is a fighter and you are doing a great job in being there with her throughout all of this. I'm glad that your mum is now back at home after her fall and I hope she is comfortable. My dad had a similar type of mattress that you talk of and he said that it realy helped him feel more comfortable in his bed.

I am also glad that your mum is able to sit up in her favourite chair and I hope that you are able to share some good talks and stories with her.

My thoughts are with you right now Sharon  and I wish you and your mum my very best wishes.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

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 yikes) 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.

Re: My mom is not doing well

Hi Sharon,

Thinking of you and your family as you continue to care for your Mum.

Katie

Re: My mom is not doing well

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

I'm so glad you were able to go to Florida, Sharon, & that your mum's still with you.  I'm so sorry to hear how she is weakening but you are such a wonderful daughter & the stories you have shared with us are so inspirational.

You are very much in my thoughts.  My best wishes to you, your mum & the rest of your family, too.

Julia xx

"Time may be a great healer, but it's a lousy beautician."

Re: 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

Re: My mom is not doing well

Sharon...your Mom is amazing in that Tylenol appears to be the drug of choice with great benefits to her. Of course, you can count on many good wishes coming her way.  The amount of information you are encountering and the way you steadfast stand by your Mom in this special time, simply shows that your dear Mom raised a wonderful daughter.
From the bottom of my heart
Much love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My mom is not doing well

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My mom is not doing well

Hi Sharon,this is how dying goes,a coma.People just sleep more and have little windows of being awake and talking a little and then they just slide into a coma and that is usually peaceful and can be a relief to some restlessness that can precede it.The hearing is the last sense to go so it is still a time to talk in a peaceful way even though there is no response.                Janet

Re: My mom is not doing well

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

Hello Sharon. I am so sorry for the turn of events and I just want to say you are an amazing daughter and I know your mom must be extremely proud of you. On the other hand your mom sounds like a pretty fabulous lady.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom is not doing well

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

Re: My mom is not doing well

Sharon,

Beautiful post.  I lost my mom on April 3, 2009.  Your post brings back memories for me.  These are precious hours and minutes that you are being gifted with.  Hold on to them tightly.

Hugs to you and your family,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My mom is not doing well

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.

Re: My mom is not doing well

Hi Sharon,

Your mum does indeed sound very determined and I am sure that she enjoyed her footrub! I also hope that you all had a good day today and that your mum likes her comfort square.

More good wishes and positive thoughts coming your way.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: 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...

Re: My mom is not doing well

Ahhh Sharon,

Your post has brought back memories of my Mom's last days.  It will be a year in April.  It is such a bittersweet time.  You have every right to be morose and sad.  You are tired, fearful and probably mad right now, but you are doing everything right. 

Your Mom has raised an amazing daughter and you are passing all of that love and knowledge along to your daughter.  There is such a bond between a Mom and her daughter!

You and your family will be in my thoughts and prayers.  These coming days and weeks will be tough but you will come to treasure these moments and you will find a deep strength in yourself you never knew existed.

I will pray for courage and strenght for you.

Much love and hugs,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My mom is not doing well

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom is not doing well

sharon_teammarian wrote:

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.

This part resonates with me also. My dad was very peaceful and in fact, knew when he was slipping in to the final comatose stage and asked for my daughter. I think there is a peace knowing the end is almost here. I found out after my dad died that he told one of his friends that he didn't might dying, he just didn't like the wait. I was so thankful that we had spent as much time as possible making memories and living instead of waiting for death. And I know that wherever he is now, he is enjoying it.

Re: My mom is not doing well

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

Good luck,Sharon with these strange times                      Janet