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Reply by jaindough
18 Jun 2014, 1:44 AM

I haven't written in awhile, so I think this thread is due an update. Things are pretty well status quo and we have not experienced any dramatic changes since last I wrote.

mom is sleeping more these days. The doctor adjusted her sleep aids so that she is mostly sleeping well during the night. She gets tired more easily and seems to initiate conversation much less frequently When we're together. She gets more easily annoyed at the phone ringing and gets very agitated when there are more than two people in the room. If I ask her too many questions she gets very frustrated.

we had a bad spell ther where mom was being very rude to the staff, swearing at them and being uncooperative and unpleasant. It comes and goes. The staff assured me they have seen worse, and they continue to treat mom with the utmost dignity and respect. They are remarkable. 

i live for the moments when mom is her most lucid. Sometimes when we chat, I would never believe that she was ill, or dying. We had an excellent chat several days ago. She said "I'm sorry to be leaving you all alone." (I make sure never to cry or breakdown in front of mom, so this was a hard chat.) I told her I will miss her but that I know she'll always be looking out for me and my boys. She assured me she would. I asked her if she was scared, and she said no, but that she really wonders where she will be headed off to next. I told her that I think it's a good place, a beautiful place and that she shouldn't be afraid.

mom hasn't left her bed for a week and a half. Getting into the lfit, transferring to the mega-wheelchair and then having to do it all in reverse is too exhausting for her. The last outing we had it was just mom and I. It was chilly and rainy so we only went out to the sitting room to warm up by the fire. I made her and I a cup of hot chocolate and we just sat quietly together. It was nice.

we had good friends of the family visit this weekend which did mom a world of good. I think it did even more good for me because I actually had someone I could talk to. Not having any family support in all of this is very hard, but at least we have friends who are as good as family in my eyes.

as for me, I am emotionally exhausted. I feel very much alone and with my husband and son away from me I feel so guilty. I am missing out on my little boys milestones and it hurts. I do not sleep well or eat properly. I am neglecting myself. I am trying to get some good walking in every day so at least I get some fresh air jd movement in. I want to say it helps me sleep, but I can't.

this is a trying time and I feel guilty because it seems like I am simply waiting for mom to die. I try very hard to cherish each day that I spend with her and try very hard not to feel resentful. All of these emotions can be really overwhelming at times. I am so blessed that my husband and I have very clear, open lines of communication. I don't know what I would do without that.
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Reply by KathCull_admin
21 Jun 2014, 2:32 AM

Hi Jaindough
What a gift you have for sharing experiences and feelings. Thank you for sharing them. I hope the memories that stay with you are those of hot chocolate shared with your mom in front of a fire, those rich chats with her as she is able, and the time you have been able to spend with her as her daughter. 

I wonder if we are more susceptible to guilt when tired - physically or emotionally. It seems to worm it's way in and eat away at our resources. Do you have access to healthcare professionals for yourself Jaindough? Perhaps someone to talk to?

Wishing you a night(s) of good sleep.
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Reply by jorola
23 Jun 2014, 4:45 AM

Your heart is wanting to be in two places at once and it can't. Can you Skype with your husband and children? I know it is not really the same but being able to see their faces might help. It is hard to take care of ourselves when a loved one needs us so much. PLease don't doubt yourself. I echo what Katherine about guilt. Please do what you can for yourself. PLease take care
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Reply by moderator | modératrice
14 Jul 2014, 12:16 PM

Hi Jaindough,

As I reading some of the other posts on Virtual Hospice this morning, I started thinking about you. It has been a while since we've had an update from you. I suspect that many things have shifted and that you are very busy. And likely too busy and emotionally spent to share an update. But I wanted to let you know that we are here if you need a sounding board.

Thinking of you.
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Reply by jaindough
15 Jul 2014, 2:38 AM

I am sitting here beside my mothers bed In the palliative care home. I left to return to my city three weeks ago. I came back up north to see mom last weekend. she was pretty well the same, but with a greater need for pain management. We had good visits but I had to return to my husband and baby last Monday. 

Mom took a turn for the worse about three days ago, with uncontrollable pain and anxiety and aggression through the roof. My husband and I had plans to come back up north next weekend but speaking with the nurse today at lunch, it seemed quite clear that moms condition was very dramatically changing.

she is under heavy sedation and they are administering a lot of morphine. She is pretty well in a coma. I just spoke to her and thanked her for being a good mom and told her I love her and her eyebrows moved a bit, but she cannot grip my hand and she does not open her eyes. Her breathing is laboured and there is a bit of a rattle.

its just hard to believe that this is where we are. This is the third loved one I have seen in this very state. I know there isn't much time left.

i feel emotionally exhausted. There is so much left to take care of after all is said and done. 
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Reply by jorola
15 Jul 2014, 3:00 AM

I am so sorry Jain.

I wish there was something i can say to help but i know there is not.

Know that we all are thinking of you and your mom.
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Reply by NatR
15 Jul 2014, 1:19 PM

Dear Jain,

sending my thoughts your way
so sorry that things are happening so fast - I am so glad you are watching over your mom and saying those words of comfort and love.

they say hearing is the last sense to go - your words are registering on some level with your mom and it's a wonderful thing that you are with her

i lost my mom a year ago - she lived so far away that I couldn't visit often or be with her at the end of life - I have always felt guilty about not being there for her.

standing with you in thought as you do your very best.  I know your husband and baby are missing you a lot - but when it's all said and done  - I believe you will be glad that you were able to be with your mom.
virtual hugs sent your way
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Reply by jaindough
15 Jul 2014, 10:14 PM

Mom died today at around noon.

i had spent the night with her (didn't sleep of course). Her laboured and rattled breathing continued throughout the night. It was hard to try to sleep hearing her breathe that way. I know she was not in pain and was relaxed but the scopolamine did not reduce her secretions.

this morning I left mom in the company of her good friend and ran off to do errands for my husband and baby then came to the house to take care of my little guy to give my husband a break. I returned to the palliative care home at a little after 11, told mom I was with her, gave her a kiss, then left the room to take a call from a good family friend. Shortly thereafter the nurse came to get me to tell me it was time.

i held moms hand as she very quietly and very peacefully left this world. I told her I loved her and not to worry about me, i'll be ok. And then she was gone. Another good family friend was with me. We both couldn't believe that after all that fight, it was really over.

i lit the candles in her honour (a ritual at the palliative home) and spent some time with her in her room before it was time to go. I looked lovingly at the face of my mother; the strongest woman I have ever known, so quiet, peaceful and finally at rest.

i feel a tremendous mix of emotions. I am sad that I have lost my mom, and the last person from my family. I am relieved that she is no longer suffering. I am angry that she had to suffer so much and so long. I am angry that I had to go through this pretty well alone (but thankfully with a loving husband). I am resentful of people who do not know or understand how hard this has all been for all of us.

i met with the funeral director, who is actually a friend of the family, which makes it so much easier. I had sat in his little room before, when dad died, and I was with my brother and my mom. I looked around his table at the empty chairs and felt so very alone. I am glad he is someone I know and trust. It made the process much easier.

good family friends are over right now, tending to baby and making us a big dinner. I asked them to please prepare something and I am thankful for the extra company. The funeral services are Saturday and I have two appointments tomorrow to start tending to things.

one step at a time.

peace now, mom. I love you. 
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Reply by NatR
15 Jul 2014, 11:06 PM

Peace to you as well!

my sincere sympathies are extended to you - what a strong and wonderful daughter you are.  I am glad that there are some familiar people in the preparations for the funeral.

hugs and thoughts,
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Reply by KathCull_admin
16 Jul 2014, 12:44 AM

My sympathy to you as well Jaindough.  I hope you can take comfort in knowing you provided wonderful love and care for your mother - even in very difficult circumstances. You were her advocate - a great gift.
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