My mom is not doing well
- This topic has 46 replies, 13 voices, and was last updated 14 years, 10 months ago by
.
-
Posts
-
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
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
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
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.
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
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
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.
Sharon,
What a lovely story about your mum’s grandchildren learning and singing that song for her, I know she will have loved that a lot.
I know what you mean about sharing those laughs and having some nice chats, I had them with my dad. This is indeed precious time with your mum and I hope you can enjoy more chats and laughs together.
My thoughts are with you right now.
Gavin
Sharon….Many may not feel comfortable reading these links but, they may be of help to you:
http://www.cancer.org/docroot/MBC/content/MBC_2_3x_When_Death_is_Approaching.asp
Also, the Hospice website has informative information.
http://www.agis.com/community/Ask-The-Experts/hfa/Signs-of-Approaching-Death.aspx
My heart is with you and I know how much you cherish this precious time,
All my love
MarionMembers in your position do ask how long, what to look for. I couldn’t remember if you have hospice coming in but they might be able to answer that for you. Perhaps even if you don’t have them coming in you could give them a call for some guidance. You might also try our search button at the top of the page. Yes, this time is so precious for you and your mom.
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.
Well I would say that was a lovely Christmas and beautiful Memories were made. Glad you got to make your trip as well. Nice as we get “older” how much the gifts from the heart count.
We have 4 grand children living near us and they have stated how there are certain things we have that some day they would like. So, this year for Xmas we wrapped up everything they had asked for and gave it to them. I don’t know who felt better, us or them!!!
We sincerely hope that your mother continues to have no/little pain and can enjoy some more special moments with her family.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.
- The forum ‘Supportive, Palliative & Hospice Care’ is closed to new topics and replies.