sharon_teammarian
Forum Replies Created
-
Posts
-
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
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
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,
SharonHi 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 cancerThings I hate…
Not being able to pick up the phone to call her anymore
That anyone should go through thisSaving graces…
Love
Family and friends
This board and all of youThis felt good…
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
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
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…
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
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
