Discussion Forums

Reply by KathCull_admin
20 May 2014, 3:15 AM

Dear JD
It was so wonderful to read this at the end of my day - Thank you so much for sharing. I hope you all sleep well tonight. Like Marstin and NatR I am amazed at what you organized today.

I hope there is some cake left over for you and your husband to snack on:)
Report this post      
Reply by jaindough
23 May 2014, 11:25 AM

Here is a little update.

First of all, thank you for your kind words. It put a smile on my face reading peoples' messages.

Mom finally agreed to go into palliative care two days after having come home for her visit. I know her doctor really talked to her at length about it and mom really liked and respected this physician so I guess the talks were productive and mom felt she was ready to go. When her doctor called me Wednesday morning to tell me I felt great relief and joy, followed immediately by great sadness, as we all know this is truly the end. It is a rollercoaster of emotion.

The palliative care home is beautiful and mom's room has a view out on the lake, with a bird feeder at her window. She has television and subdued lighting. The staff are very attentive and they prepare whatever food she may want to have every day. She still has particular requests that I run around to fetch for her. Today it is bacon :)

I am trying to organize a violin player to come to the palliative care home to play for mom as she likes the sound of the violin and her eyesight is bothering her more and more. This will be something she can enjoy without having to focus. It will be a nice surprise. I won't ask her if she would like it, because she always says no to whatever I suggest. I'll just do it.

My husband will be heading back to our big city on Sunday. We are calling in the troops to give us a hand as my husband's work is falling far behind and I am spread too thin trying to care for everyone. The baby will be going back with him (as well as our dog) and my in-laws will look after the little one for the week. My husband will be coming back with baby on Friday. I am going to have a very hard time being away from my sweet little boy for so long, but the exhaustion is dictating our needs at this point. 

My aunt and uncle are visiting Saturday which will be nice.

I wish you all a pleasant weekend. 
Report this post      
Reply by JennJilks
23 May 2014, 12:08 PM

I'm so relieved to hear all this. You are making wise decisions. Your little one needs you, too. When my daughter was running back and forth from her place to her late father's house, where he was confronting his colon cancer, while caring for his wife with Altzheimer's.

Her daughter, our granddaughter (age 4), was up in the night, wetting the bed. They do feel your stress. Give your boy a lot of attention.
In the long run, your mother will be proud of you. I had a couple of encounters with psychics, who conveyed the message that my mother understood what I did now that she had passed.
/two cents 
Report this post      
Reply by marstin
23 May 2014, 4:57 PM

Hi jain,

This journey is like walking on a tightrope. You have to find the right balance for yourself so that you don't crash. How wonderful the palliative care room your Mom has is so tranquil. Such a switch from the cold, sterile environment of a hospital. At least you know that your Mom will have the best of everything.

Have you managed to find a violin player? I guess the alternative is to bring up a cd player and have it playing violin music softly in the background. You are such a kind, thoughtful daughter.

The support of your husband is awesome. Being given the opportunity to focus entirely on your Mom will make things a little easier to deal with although I know you will miss your little one like crazy. Having caring family members is such a great support.

I hope your weekend will bring happy moments and memories to keep.

Report this post      
Reply by jaindough
01 Jun 2014, 1:28 PM

Here is an update.

mom is still in the palliative care home. Her mood really fluctuates and what I thought was a poor appetite is not really true. My mom eats a few bites here and there, but constantly and around the clock as I have just learned. I stayed overnight with her for the first time last nighT. The cot was really comfortable, but mom wakes constantly and if she does sleep, it is for maximum, one hour at a time. Then she wakes up, has a snack and stays awake for a while before going back to sleep. This is even with relaxants and sleep aids. She is exhausted. I only did one night with her and I am totally exhausted. She needs constant round the clock care. Her needs surpass those of my newborn child.

Moms mobility has steadily declined. Three weeks ago, I could get her up out of bed and gently help her walk to the bathroom. we then progressed to me being able to transfer her on my own from the bed to the wheelchair and to the bathroom, or going for a spin outside for fresh air. We then progressed to us needing two people to be able to transfer her. We now have to use the lift to pick her up and she is using a bedpan and wearing diapers. I want to take her outside for a change of scene, but she hates the lift and refuses. At least she is open to bathing a bit more regularly.

she still insists on doing as much as possible on her own, and she refuses medications Sometimes. She has a serious case of mouth ulceration due to thrush but she will not let me help her with her oral hygiene. Silly things set her off like me moving a pillow to the wrong place in the room, or me not getting her what she wants fast enough, or my having to ask her to clarify what she asks me for.

i am very very grateful to the staff at the palliative care home who are kind enough to lend an ear when I need to vent and they reassure me and try to comfort me, knowing I am on my own. I sent my husband and baby boy back home so I have been struggling, trying to take care of mom and take care of the house on my own. i cook up anything specific she may want so that takes some of my time too, and it is hard for her to understand why I can't get things done instantaneously. 

sometimes mom is really confused and she often forgets she is no longer in Montreal. I've had to remind her many times that I am staying at our house and that she is in her hometown.

when mom does sleep, it is for brief stretches and they are fitful, restless stints. If she naps during the day, the nap is not longer than ten minutes and she is in very active rem sleep, with her eyes constantly movi and her mouth as well. She often speaks in whispers. It's a bit creepy. I asked her what she dreams about, and she often cannot recall.

i miss my husband. I miss my son. I miss feeling normal. I wish my mother peace. This is not a pleasant way to have to leave this world. She is no longer recognizable at times.
Report this post      
Reply by NatR
01 Jun 2014, 7:28 PM

Dear Jain,

your letters are descriptive and really give us-and all forum readers how extensive the care is at end of life.
i am so glad to hear you are coping, I know it's hard, I commend you for ensuring that your mom has all that she needs.

you of course miss your baby and your husband,  but this time for your mother you will never regret spending with her.

just know that you have made incredible decisions, hard ones, giving up usual routine to be there for your mom.

i send you my thoughts and energy to get through this difficult time.
Report this post      
Reply by jaindough
08 Jun 2014, 3:09 AM

Here is a little news regarding mom.

i found a violin player to come to the home to play for mom. The palliative care home was all a twitter when the player finally arrived. Mom was very surprised and excited And the music was absolutely beautiful. The staff told me that several patients, their loved ones and the staff were sitting in the main sitting area, in silence just soaking it all in. (There are six patients at any given time at the home). One of the patients is bed bound and mostly deaf, but at the sound of the violin he asked to be brought closer to hear better. They wheeled his bed right next to moms room so he could hear better. It was a beautiful experience for all and mom actually remembered it, even the next day.

mom is bed-bound now, however staff do use the lift to get her to the bath, to the bathroom (sometimes) and into her super-wheelchair so that we can go outside. She feels herself declining steadily and we talked about that today. she says she can't believe how broken down her body is. Her eyes are getting worse. She sees double and triple of everything and it really bothers her. She wears diapers. She has to be manipulated in bed as she cannot easily reposition herself. She has started a bedsore and her heels are irritated. I cream her heels and elbows regularly. I massage her legs and arms. It seems to provide some relief. Sitting up for too long is exhausting for her and her back gets sore easily.

i just wanted to say that I can't believe I was considering trying to care for mom at home. I don't know if it was naïveté or denial, but I think there would be no way I could meet her level of care that she has at the palliative care home, here in her own home, regardless of how many people I may have hired. I am so very thankful for the hospice and the staff are excellent. They have dealt with end of life brain tumour patients and know what to expect. They know how to deal not only with moms physical needs but emotional and cognitive as well. They have taught me a lot. I could never have taken appropriate care of her here at home. She needs looking after around the clock as she sleeps very erratically. Just the equipment needed to properly bathe and move her is pretty amazing.

my husband and baby are back for several days. I have to say that I broke down in tears when they arrived. Two weeks away from them was very, very hard to do. I don't think mom fully understands what I am going through but I know deep down indside that she is very thankful to have me with her, and that is all that matters to me right now.
Report this post      
Reply by NatR
08 Jun 2014, 3:41 AM

Dear jaindough 

amazing amazing letter saying so very much about the way your life has been the past days and weeks - I am so pleased to hear about the violin music - and how that gentleman touched so many others too:)

i am in awe at how your time witn your mom has been going .   you have been able to give such wonderful gifts of music, tenderness and caring in  her final days and even the bits of conversation you have shared with your mom .

i am sure seeing your husband and baby after 2 weeks was overwhelming for you - it would be expected - not to mention the support and love your husband will provide - and your little boy who will one day learn this family story  about this difficult time when you did an incredible juggling act:). He will be so proud of you - and know that you gave from the heart ;)

yes the care around the clock is intense and exhausting - and I am so glad to know that from your first note to the forum - til now - you have been a fast learner and a quick study - not to mention the foot rubs, gifts of a trip home with lunch and friends no less.....your mom has a wonderful daughter ,.. 

Kudos to you for your love and care
write as you can and know that all your decisions have been so wonderful for your mom.
my thoughts to you and I hope that you will get some rest and baby hugging time in- I am so pleased that the hospice has been a good place for your moms needs
best wishes,
natR :)  
Report this post      
Reply by marstin
08 Jun 2014, 4:30 AM


How incredible that day must have been. I can imagine that not only did it bring comfort to your Mom but also to all that were within hearing distance. It's these kind of moments that will play over and over again in your mind in the future. I remember in my Mom's final days how myself and the three granddaughters would spend many hours sitting by her side. My niece would try to wash her hair as best she could and set her hair as this was always so important to her. We would put lotion on her hands and feet and we knew that she was happy with all that was being done for her even when she was unable to speak anymore.These memories still bring tears to my eyes but they are happy tears for she knew how loved she was. I'm sure your Mom feels the incredible love that you have for her.

Caring for your loved ones at home is extremely difficult and you made the choice that has proven to be beneficial to both you and your Mom. Those kind of decisions are so difficult to make and although there is no right or wrong choice, this appears to be what both of you needed. I'm sure it has been extremely difficult to be away from your husband and baby and it's good to hear that you are now all back together. Now you will have the love and support to carry you further along on this journey.

Report this post      
Reply by KathCull_admin
17 Jun 2014, 9:48 PM

Hello, everyone, 
Jain, how have the last couple of weeks been for you and your family? How is your beautiful little boy? The story of the musician was lovely - it seems that music crosses all barriers - what a gift for so many people. 

Kgosley, a new member, posted this afternoon toNew and Overwhelmed! Could those of you on this thread who are able, respond to her? Thank you in advance.


Report this post