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Reply by Plum1

14 Apr 2013, 12:01 AM

Dear Lilbear (Paula)

You express so well how cruel and unfair life can be. I feel very much for you and your family. So unfair that your mother is being robbed of a life to which she was looking forward. So unfair that you and your brother have not had time to grieve the death of your father as you turn now to your mother's very grave illness. You can well ask, "Why is all of this being dumped on us!" I am glad you are allowing yourself to release this indignation. Please continue to share all of your feelings.

Your heart is being stretched and stretched. Know that my heart and prayers are with you as you face each day.

Plum 1

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Reply by lilbear

19 Apr 2013, 2:04 PM

I know it's been a while since I wrote. There has been so much to do. I did not realize how much work was involved after someone dies. It has been an eye opening experience to say the least. Make sure your family knows where all of the important paperwork is! My Dad was meticulously organized, but we had to spend last week trying to go through his stuff and look for where he hid everything. Of course, this wasn't supposed to happen like this-my Mom would have known all the answers. But, life has definitely served us an unfortunate and surprising turn. Perhaps this is God's way of making sure my brother and I had to work together and it has been a wonderful experience spending time with him working through this.
Here's the thing...I am feeling too "normal" almost?! I thought I would be crippled by the grief and sadness but I feel almost disconnected. I hate that too, even though it does make it possible for me to carry on through the rest of this. But, I feel disloyal to my parents because I am just going along. I guess my fear is that at some point the other shoe is going to fall and I am going to just be crushed by everything at once hitting me.
I think people must think I am on some kind of drugs because I am not an emotional wreck!
We are still waiting for my mom to be transferred to Sunnybrook and it seems we are in a never-ending administrative loop hole! Maybe when she is transferred, I will be hit with the emotional turmoil?
Thanks for listening...again.
Paula

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Reply by NatR

19 Apr 2013, 2:31 PM

Dear Lilbear, Paula,

thanks for writing its good to know that you and your brother have been able to work through the details and paperwork together.

I am glad to hear you are holding together and I expect you will probably have moments when the pain will hit you hard. It's there, you are doing an important job holding things together for your mom, but I am sure you will make it through those moments - so be ready and let yourself be supported by your husband and your brother.

you have certainly given great insight to forum readers about the process you are going through / and you have had quite a lot to handle

i send you my best wishes and thoughts today, be encouraged. You are a remarkable person, daughter, sister and mother.

you demonstrate Love - Courage - Compassion

keep posting messages as you can, and know you are doing the best job - your family - your parents are lucky - so lucky to have you
sincerely,
NatR

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Reply by marstin

19 Apr 2013, 3:43 PM

Hi Paula,

It's good to hear from you. I swear that the mountains of paperwork keep our minds so occupied that you can't do much else. It's wonderful that you and your brother are able to work so closely together.

I know that when Len passed away and I had to immediately jump into caring for my mom, that it was an almost emotionless time. I believe that the body does this to protect our delicate minds. The feeling was there but not right on the surface. What my social worker said to me when she realized that the patient's family that she was working with was connected to me, was that I hadn't even had time to process Len's death. I think she teared up more than I did. I believe that your grief is on hold because it is just too much to take in at this time. It is okay to feel like this right now. You have so much still to do.

You say that you are waiting for your mom to be transferred to Sunnybrook. Has there been any further testing on her or any other information you have been given on her prognosis?

We are here for you and sending you warm, loving thoughts.

Hugs,
Tracie

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Reply by lilbear

23 Apr 2013, 9:48 PM

So, we are still waiting....seems that we are in a constant administration loop. The hospitalist/doctor we have had said he was forwarding papers, etc. But, we phoned Kingston and they have no recollection of him calling. We have had to call the neurosurgeon again and now the papers have been sent to Kingston. Who knows how long this might take though. At this point, we have not even had the chance to have a good discussion with an oncologist regarding prognosis/treatments.
Over the weekend my Mom started to experience more and more pain. She was moaning and calling out quite loudly. It was awful to see. As of yesterday, they have increased her pain meds (Dilaudid) and she is getting that at regular intervals. It was really hard to hear that yesterday as it all seems like a creepy deja vu and I just felt so overwhelmed by it all happening again! I found it odd that I knew exactly the pills and everything they talk to me about is way too familiar.
Here's another interesting development - my Mother's two sisters have shown up at the hospital. The thing here is...they have been estranged for over 30 years. There is so much history to this, I won't bore you. Suffice it to say, I know a lot about how they treated my Mom and really resent them showing up now. My Mom, however, in her current state was quite receptive to them. I really cannot stand them being around but am trying to suck it up for the happiness of my Mom as I know she may need this closure. I just think they are phonies and I don't like that the Doctor and nurse felt it okay to tell them all about my Mom's meds and that they had called Kingston, etc and the latest updates. They have no right to be involved in any of this! I don't want them (the sisters) to try to talk to me about how to handle anything...where have they been the last 34 years?? I am so pissed off with this situation. I do not know how to handle this extra stress and drama...I sure as hell did not need more stress!
I am going to take in copies of my power of attorney to the hospital tomorrow and tell all involved that they are to only discuss my Mom's health with me or my brother. OMG...seriously, like I need this too! UGHhhhhhh.....
Thanks for reading my rant,
Paula

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Reply by lilbear

23 Apr 2013, 9:49 PM

Ooops...I meant papers had finally been sent to Sunnybrook.

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Reply by marstin

23 Apr 2013, 10:24 PM

Hi Paula,

You poor girl! Just what you need is relatives swooping in and basically taking over your job. At least I'm sure that's how you feel. I think if you mention it to the nurses and doctor that they will place a note in your mom's file to not give out her information to anyone except you and your brother. I know how angry I would get when people would try to take over on my mom when she got ill and my blood boiled since I had looked after her for years without their help. Please don't forget to breathe. Take a slow deep breath in, hold it and then slowly release it. Try this when the stress begins to build.

I'm sure that knowing so much about these medications is the last thing you thought you needed to know a few months ago. It is good though to be aware of what they are giving her. I know that they wouldn't let Len out of the hospital for his final days until they switched him onto methadone. He fought them valiantly but they would not allow him to come home taking the Dilaudid even though it was working well on his pain and I had administered it to him at home on a few day trips. As soon as they put him on the Methadone, it took away his ability to think clearly and was drowsy and half crazy all of the time. They had promised that they wouldn't let him out of the hospital until they had the right balance since he had paperwork to clear up at home and couldn't be fuzzy headed. They lied. They set him free on what was to be a day pass. I have never forgiven them for that. The paperwork never did get done, he was too stoned. Sorry, now I'm rambling. All I can say is to stay on top of what's going on.

I think sometime's the doctors have far too heavy of a work load and people pay the price for it. The waiting on the paperwork to go through has to be so frustrating when all you want is for things to start moving forward.

As for your aunts, I don't know what to say. They are probably there out of guilt and your mom in her altered state has probably forgotten the years of separation. Maybe just try to avoid them as much as you can. I know, easier said than done. Your anger is understandable and yet it only tears you apart and has no impact on them. Please give yourself a big hug from me and keep on venting. We're on your side.

Tracie

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Reply by lilbear

25 Apr 2013, 2:02 PM

Well we finally got our meeting with the oncology team at Sunnybrook. However, all hope has been squashed. Treatment is not a viable option and so we were told that we are looking at approximately 2 months. She will be going to palliative. Omg, we have to do this again! How?! Why?!
My heart is breaking. I feel lost and don't know what to do now. How do I tell my kids this again. I just cannot form words or thoughts. I cannot evenbring myself to go there today to see her. That makes me feel bad too. I literally feel sick to my stomach.
Paula

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Reply by Mark99

25 Apr 2013, 4:15 PM

Paula

I am dumb struck by this turn of events. Yet again you face this pain and hurt. I am so sorry. We are here but the reality is you are there and doing your best. Know we are with you and even in small way there is comfort and peace and help here.

Mark

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Reply by marstin

25 Apr 2013, 5:05 PM

Hi Paula,

I am so sorry to hear that you have been dealt a second blow. Life can be so cruel sometimes. The pain you are experiencing brings back the memory of losing Len and my mom back to back and brings tears to my eyes. To lose one parent then be told that the other has limited time to live must be like living your worst nightmare. Children are much more resilient than adults and although yours will be very saddened by the news, they will be okay as long as you are.

It's okay to take time out for yourself. You need to do that to be able to carry on and keep your sanity. How is your brother taking the news? Hopefully you can lean on each other to get through this. Surround yourself with supportive people and if there is help through the hospital please take it. I never did but now I am considering getting some kind of therapy to finally deal with the pain. It is too much to handle alone.

Although we can't be there for you, know that we are there in our hearts and minds. We will walk beside you to help you through the pain and sorrow that you are feeling.

Hugs,
Tracie

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