1

(20 replies, posted in In Remembrance)

Hi Gavin

Two years for your dad and my mom... seems like only yesterday and a lifetime all rolled into one.  Here's to our memories, happy and sad. And here's to both of them, with lots of love.

Take good care.

Sharon

2

(25 replies, posted in General Discussion)

Lainy, I read your post and I keep thinking of my mom. Years ago, our first child was born with a syndrome that meant a short life span. She lived for nine wonderful months that were filled with love that still outweighs the sorrow of losing her so soon after she came into our lives. When she was just a few days old, I remember my mom saying to me in the hospital as we were trying to come to grips with our new reality "no one said it would be easy".  A cliche - I know - but one that resonated to the soles of my feet when she said it.

Years later and just months ago, I sat with mom and we talked about whether she wanted to be at home, in hospital or at hospice. And all I could hear in my head was her voice and me understanding just how messy life can get. Her first reaction was to say "whatever you all think is best". When pushed - like Teddy - she admitted that she didn't want to be in the hospital and would prefer to be at home. We were lucky - there are six of us and we - along with some incredible support from hospice - were able to keep her home to the end. The nurses were on call 24/7. They came by 4x a day to check on her and adjust her pain meds as needed. If needed, we just had to call the centre and a nurse was dispatched.

But we also talked about moving her to the actual hospice if we needed to - especially if her medical needs outpaced our ability to keep her comfortable. Our visits there and our discussions with staff, patients and families comforted us greatly to know that mom would've been a-ok had we transferred her.

There are no right or wrong answers - you will do what you need to do. And everything you do is motivated by love and so it will be ok.

Thinking of you and Teddy with affection and love

3

(10 replies, posted in General Discussion)

Lainy and Teddy,

I have wonderful visions of Teddy dancing to Mama Mia even though I've never met you face to face. God bless you both. You make me sure we meet the ones we love in the life after this one.

With great affection,
Sharon

4

(11 replies, posted in General Discussion)

Hi Pam

This is a few months later but I couldn't help respond to your post. My mom experienced serious confusion and short-term memory loss in rapid order after her diagnosis. This board suggested a number of things including lactulose which did help a lot. If you haven't done a search on here for confusion and memory loss, please do so as there is a lot of valuable information.

It took a few weeks for the lactulose to kick in for my mom, but it did and it helped keep her lucid which was SO important for her.

My mom had to give up driving as well. It was very hard to see such an independent woman give up so much of her independence.

I wish you all the very best.

Sharon

WOW!

Things my mom hated...
Not being able to go to the bathroom on her own anymore
Trouble swallowing
That her memory was so affected and she felt she was sometimes chasing her mind (her words that will never leave me)
That she had cancer

Things I hate...
Not being able to pick up the phone to call her anymore
That anyone should go through this

Saving graces...

Love
Family and friends
This board and all of you

This felt good...

6

(33 replies, posted in General Discussion)

Lainy,

Today is my first day back to the board since mom passed in January. And this is the first post I've read. I wish you and Teddy everything you both need right now. My thoughts, hope, love and prayers are with you both. God bless you both.

Sharon

Maria Anna (Marian) Vanderwerff
April 11, 1930 - January 17, 2010

It's been just over a week since mom died. In true fashion, she waited for the hour when not one of her six children were by her bedside - I don't think she could bear to be with one of us. Instead she was with her favorite caregiver Kelly, for which we are all so grateful.

For those of you who knew about my mom, you know that she - like so many -  bravely fought this disease. Until a week before she died, she managed with tylenol 2s - I think she literally "willed" the pain to stay at bay, but when it did break through, it did so with a vengeance. Once the pain pump was adminstered, it was though she was ready to let go.

My brother flew in from Vancouver on Friday January 15th and went straight from the hospital to see her. He was able to spend all day with mom on Saturday (his birthday) with both me and one of my sisters.  She was still able to communicate with us - I know she heard everything we said and would occasionally try to chime in to let us know she was with us. Two of us were on our way to her bedside on Sunday morning when another sister got the call that she had died.

The last week has been fueled by a combination of adrenlin and relief. Her last week was so incredibly difficult to watch that a big part of me is glad she is at peace. And I do truly believe she is at peace. But the other part of me is filled with pain and grief and loss that seems incomprehensible. I'm not sure how I'll ever begin to fill the hole that she has left. I'm not sure it can be filled.

Mom, I will miss you for the rest of my life. I love you.

8

(4 replies, posted in General Discussion)

Hi Lauri,
Great news for your mom. She's a fighter, that's for sure. Good luck with the scans and keep us posted.

Sharon

9

(5 replies, posted in General Discussion)

Hi Scraggles,

My mom developed ascities shortly after her diagnosis. Other than the appearance, it hasn't bothered her very much although it can be a real problem for some people. It may be one of the things that has caused some shortness of breath for mom though.

She chose not to have it drained as our research showed that often you can drain it and it builds right back up again quite quickly. Another consideration was that each procedure increases the chance for infection which was really mom's biggest enemy at the time.

As Marion said there is a wealth of information on this topic on this site so I am sure you will find what you need to help your mom decide what to do with her doctor's help.

Good luck and I hope your mom is feeling ok,

Sharon

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...

11

(10 replies, posted in General Discussion)

Kris I have been thinking of you ever since I read your post last night. We lost our first daughter when she was 9 months old. She had a genetic disorder that only allowed us to have her with us for such a short time. When she was born my sister, two of my best friends and two of my colleagues all had newborn babies. I remember how impossibly hard it was - I loved all the babies around me and I didn't want sister or my friends to feel guilty for having what I didn't have (a healthy child) - but it was so hard sometimes not to be jealous of what they had. And of course I was grieving - while she was alive for a life that I had imagined that was never going to be and after she was gone because I missed her so much. 

I think that anytime our lives turn out to be drastically different from our expectations and our dreams we grieve even while we adjust and perservere. Some of the best advice I've ever received was from a wise woman who told me "It is possible for you to feel more than one emotion at the same time". For me, it was such a liberating concept. It meant I could love all these babies and moms around me but it also gave me the courage to tell them that it was hard sometimes for me to be with their babies but that I still needed my sister and my friends. That opened the door for them to express their feelings of sadness for me and the guilt they inadvertently felt for having their healthy children. It also opened the door for "baby-free" plans allowing them to support me which I really needed.

Kris, you are one of the bravest people I know. I can't imagine what you are going through. But I do know that you give so much of yourself, no one who knows you can possibly forget you.

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

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

14

(19 replies, posted in Suggestions)

I am intrigued by the idea of a caregivers venting section as I am by a section for patients. While we are all in the fight against CC, we do have different perspectives and needs.

I have found myself "self-sensoring" when I post because I am cognizant of everyone who my read my post - just as I have read so many posts (some of which broke my heart and gave me nightmares). However, those same posts that were so hard to read have given me an idea of what might be coming for mom and have helped my prepare myself, help her and have helped my family understand a small fraction of what she is facing. They have also helped me act as an advocate for her, and put forward ideas about her health that her physician might have missed or not seen quite as quickly.

When people come to site like this, it is to find answers that are elusive and hard to find somewhere else. It is for comfort, the ability to find a "family" that gets what you are going through. And it's a place to ask hard questions and hear hard truths. But most importantly, it's a place of acceptance; a place with no judgement and a feeling of not being alone in what is generally a dismal situation.

I think that Kristin and Kris nailed it when they said they avoid sections that are potentially upsetting. I know I've done the same as a caregiver. We all can also stop reading at anytime - we do have that choice.

So all this to say... I'm not sure anymore but I feel pretty good having a place to share my thoughts. A "caregivers corner" could work well - it would let people know from the outset if they want to read or participate and let others aovid it all together.

As a caregiver, the absolute last thing in the world I would want to do is to cause any guilt, pain or saddness for my mom or anyone who is battling CC.

Yet having a place to be honest and open is invaluable and might make me a better caregiver for everyone I love, including myself.

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.

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

17

(9 replies, posted in In Remembrance)

Pat,

There are no words for the grief we feel. Yet like Patty, I look forward to reading Marjorie's words.

I am so sorry for your loss.

Sharon

18

(17 replies, posted in Introductions!)

Dear Kay,

My mom was diagnosed in July 2009 and is now approaching the end of her life. She too chose not to actively pursue chemo and radiation and was lucky to have a few "good" months before falling very ill again.

I am glad you have a sister to stand with you. It sounds as though you both put your mom first and took care of her to the end. My mom says to us often that it is testimony to how she raised us that we are all there for her near the end.

I hope you find some comfort and answers here. It is a place full of wonderful and supportive people.

Hi Gavin,

She did love it so much. She keeps talking about it so she won't forget it happened given that her memory comes and goes right now. We also bring it up so that it helps her remember.

Lainy I did contact Hospice again and was reminded about how helpful they are. Because we are caring for mom at her home, we are not using the hospice resources as much as we might (mostly we are accessing nursing and care support). I had a good long chat with them yesterday which helped me answer some of my questions.  They also offered helpful advice about where to buy the mouth swabs etc.

Marion, those sites were very helpful and also helped me understand where mom is on her journey. Some of my siblings and I are trying to plan our leaves from work and this helped us a lot.

I am going up to see mom again today and am hoping to connect with her primary nurse.

Thanks again for all the ongoing support.

Lainy that sounds wonderful. I'm glad you could all share in these gifts from the heart.

I was with mom for about 10 hours today. We had some nice chats. And we also laughed. I am constantly surprised by the beauty of this time. That ability to laugh - and laugh hard even though we know mom's coming up to the end - so many signs are there and more appear all the time. But what a gift just sit and "be" in the moment and to share that with her. We don't do this enough in our busy lives and the missed opportunities make me melancholy today.

Mom's weaker, it seems, by the hour now. I'll be trying to go more often now. I have a feeling that precarious life balance is about to shift dramatically.

Was anybody else so obsessed with wanting to know when, dreading the answer and knowing it's a question with countless ways to get to the same end?

What a rollercoaster this is.

21

(29 replies, posted in General Discussion)

Welcome Scraggles,

My mom was diagnosed this past July. She had severe jaundice and little to no appetite. The morphine definitely contributed both to her lack of appetite and to her drowsiness. Once we were able to get food into her though, she did bounce back very nicely. We found the shakes were very helpful in getting her strength back. The trick was finding one she liked and then giving her only a bit after she ate (1/3 after her meal). A whole shake left her feeling ill and if she drank it before she ate, she was too full for her food.

I too was a lurker but can tell you that this board and the people on have been a godsend as we work through this disease with mom.

Sharon

Well, I did end up going to Florida and got back on December 21st. I was on the phone daily with family and spoke to mom a few times while I was gone.  We came home late Monday night and I was up to see mom first thing Tuesday morning.

She was in good spirits although she has lost a lot more weight (I didn't think it was possible). Incredibly, her vital signs are stable and her jaundice is far less severe than it was when I left.  She is still eating and getting up to use the washroom (she is very determined).

We then had a whirlwind of activity leading up to Christmas day. My sister had her three sons learn an old dutch hymn and we managed to get a piano into my mom's apartment. One grandson spent the last two weeks learning how to play it and the three boys (19, 16 and 13) sang it to my mom on Christmas morning. My mom's jaw dropped open when she realized what they were singing and she was quite teary. It was a beautiful gift - "the best Christmas present ever" she said.

Later that same day, I was rubbing her feet (which she just loves!) and she was trying to explain to me what it meant to have her grandsons - three teenage boys - take the time to learn the song and to learn it in another language. just to bring her some pleasure. She finally just said "That's love. That's what that gift is". She has also held strong to the memory as she is determined she won't forget it (her short-term memory is largely shot).

She is so tiny now. I can't believe she can still stand up but she does. Sometimes she needs help - but other times she wills her way through it. She is so courageous and strong.

The palliative team here is amazing. Her core caregivers are fiercely protective of her and work to give her dignity through these days. She sleeps more and more. Luckily her pain seems tolerable so far.

The bile continues to drain although it is less than before and is very different color than before.

We've been told this is the "honeymoon" period. I'll need to look that up but I suspect it's the last good stretch we'll have.

My mom was right - she does still have surprises left for us.

While this disease is horrible as is watching her leave us so slowly, I am grateful for this time where we can share memories and still find reasons to laugh.

23

(41 replies, posted in In Remembrance)

Hi Gavin

I am so very sorry for your loss.

You and your mum are in my thoughts. Please take care.

Sharon

24

(10 replies, posted in In Remembrance)

Dear Lovemymom,
I am so sorry for your loss. I know that the time and care you gave your mom helped her tremendously as she came to the end of her life. She was blessed to have such a caring and loving daughter. May your memories be of comfort and help you in your grief.

Sharon

25

(16 replies, posted in General Discussion)

Hi Kris,

I hope you find the artillery you need. Good luck on Thursday and know that we are all in your corner.

Sharon