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Reply by Tian

05 Apr 2013, 1:23 AM

Dear Lilbear

Your parents' problems are no less serious but it is great relief for you to be home. However you have been under crushing pressure and it appears you still need more of a break. I think that to be better prapared for the ongoing ordeal you should take a day or two away from the hospital and spend time with your kids. Things could well get worse and it is more important than ever that you care for yourself so that you can care for others. Now is a great opportunity to take up your brother's offer of help. As Marstin said, be gentle with yourself.

Tian

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Reply by lilbear

05 Apr 2013, 11:16 AM

Thank you. I am not feeling so well this morning. I have a bad headache and feel bit queasy. I am supposed to go see my chiropractor at 10 am because I screwed up my back over the last week sitting in the hospital chairs and not sleeping in my own bed.
My brother is coming out for the day to be with momand dad. I am trying to convince myself to stay home. He has been very good and worries about me more then I ever expected. He told me if I want to meet with him today, that would be great...but he suggested to meet somewhere other then the hospital.
I am trying to rest and some nights are better then others. I'm guessing my feelings today are stress related.
It is hard to stay away...it feels so selfish and I feel guilty.
Lilbear

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Reply by Tian

05 Apr 2013, 11:36 AM

You are not being selfish at all. Many people need you so making yourself stronger to take care of them benefits everyone. It's great that your brother is accepting his responsibilities and his suggestion to meet away from the hospital is a very good one.

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Reply by Plum1

06 Apr 2013, 12:31 AM

Dear Lilbear,
Just want to add my voice of support and affirmation. I, too, am glad that you are now home and able to sleep in your own bed. Home can, hopefully, also offer you and your children the bit of "normalcy" that you have mentioned. I am sure you need it as much as they do.
Of course, being home means that you are close to your Dad again and want to be visiting him. The balancing of caring for so many people at home and in the hospital is an enormous challenge. Please keep reminding yourself that you are human, and it is critical that you care for yourself. There is quite a road still ahead, and you will never make it yourself if you are not taking time off and allowing others, like your brother, to take over at times. I am very happy for you that your brother is showing more care and empathy than you may have expected. Maybe you will even allow yourself to ask him to give you some free days or parts of days while he steps in with visits. That is what love and family are about. It is the sharing, and being for each other that will draw you closer together, and give you strength to go on. You may be giving your brother a great gift in giving him the opportunity to share his time and love.

My love and prayers are with you!
Mary-Ellen

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Reply by NatR

06 Apr 2013, 12:47 AM

Dear lilbear

i just want to add my thoughts to those of the others responding to your updates.

sorry to hear your back is bothering you - this is your body telling you to rest a but more and yes, it's hopefully a chance for your brother to step up and give you a break, much needed.

I can identify with your " I still feel guilty" feelings - it's part of the caregivers make up to keep going til there is no energy left.

burn out creeps up on you, your need to be " on duty" outshines your body,s need to rest.
i know! Whether at home or in a facility working we caregivers want to keep on going - but it's time for you to take a short break.

it may not seem important or even long enough - but your mom and your dad know how much you care. Your husband and children also know what you do and they need you to take a step back and breathe - playing with the children, resting, a movie or a good book, just whatever gives your mind a rest

sending you strength and hope you will find a few moments of peace and rest
sincerely,
NatR

ps Mary Ellen, plum1 said it right - your brother needs his moment in the sun, his moment to connect and interact with both parents - let him do that for you, and for him. the memories he creates with his parents will be something he will treasure - and thank you for;)

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Reply by lilbear

06 Apr 2013, 2:24 PM

I think God was making sure I stayed home and got a break yesterday. I fought a terrible headache most of the day and didn't do one thing. My brother and sister in law came down and spent all day going between mom and dad at the hospital. He spoke to the doctor and then he spoke with my dad's nurse. My father's death is imminent. And although I used to feel cruel wishing it was over, I don't anymore. He deserves to be at peace, he has suffered long enough. I would not be surprised if it is very soon now that he knows we are all back.
My mother's state is harder to bare. She hardly speaks and stares at me with so much in her eyes it rips me apart. She seems worse since the biopsy and I don't know if it has anything to do with that or it is just the natural course of this illness. I know that if this is as good as she will ever be again that she will not want any treatment. This is not living and she would hate it and would hate being a burden to us.
My kids have missed the last 2 weeks of school. When my father dies I guess they would not be going again?! All of these decisions seem overwhelming. Of course I guess we just have to wait and see how they are handling it.
When my Dad dies...do I try to tell my Mom? Is there any point if I don't know that she would even comprehend it? I don't want her to be sent into a weeping spell for a week again. Any ideas?
Lilbear

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Reply by marstin

06 Apr 2013, 3:34 PM

Hi Lilbear,

So much to think about and so much to carry. No wonder you had such a wicked headache. Someone told me the other day to view what's ahead like a car travelling in the dark. What you need to see is what is revealed in what the headlights show you. Don't try to see what is in the darkness, it will reveal itself when you get there. I think that the idea is to focus on what's in front of you today and to not try to foresee the future. Take each day at a time. We can drive ourselves crazy trying to stay one step ahead.

What you have said about your dad reminds me of when my mom was so close to death. I had accepted the fact that she would not be coming home and that nothing could save her and just wanted her struggles to be over. When she passed away, I was there beside her and it was a heartbreaking but peaceful moment. How to tell you mom when it happens with your dad? I think the answer will come at that time.

Hugs to you,
Tracie

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Reply by lilbear

06 Apr 2013, 3:47 PM

Tracie,
I like the car analogy. It sums it up perfectly and I try to remind myself of that, but as I am sure you know, it is very difficult at times. I think it's an automatic response to try to brace yourself for what may be around the next corner even though it's not possible. I appreciate your response and will keep the car in my head.
Again, I can only express gratitude for this forum, it really helps.
Lilbear

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Reply by lilbear

08 Apr 2013, 11:04 PM

Well, my wonderful Father passed away today. After such a long and torturous time dealing with his illness, I am relieved for him to be finally pain free and at peace. We knew it was imminent and had them bring my Mom down to see him one last time. That was gut wrenching and heart breaking. Honest to God, it was like some terribly sad scene in a movie. Unfortunately, it's real life.
My parents do not want any funeral. So, my Dad will be cremated but I am so undecided what to do with the ashes, as they do not have plots. My Mom had been thinking about keeping my dad's ashes. I'm not so sure how I feel about keeping them. I would like a piece of jewelry with a small amount of ashes encapsulated in it. Where and how do you do that?
Still to come this week, we will have to learn the outcome of my Mom's biopsy. What a lovely freaking week!
One day at a time....
Lilbear

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Reply by NatR

08 Apr 2013, 11:22 PM

My sympathies to you dear Lilbear,

You are a trooper and you did for your father what he needed..you loved him, honoured him and you will miss him. He had your caring watchful presence over him. All this time when it was so hard...now...I know you realize it was worth every second...to give him care, comfort and reassurance. There will be no other man in your life to take his place...you did your best.

I can only imagine how difficult it was to have your parents see each other one last time...those are the moments that are so very painful to go through...but so important for your parents...those last few moments together.. I know that this memory will also go into your memory book...that you will be grateful they saw each other and were together. Being separated by death after so many years...the face to face real time closeness meant worlds to them both...I know that...I feel that.

Lilbear, funny you should mention the ashes and what to do with them,....I saw a couple of ads, or programs...and even locally in my town..I have seen signs outside of jewelry shops...offering jewelry that contains ashes in a sealed locket or something of that nature...and I also know you can obtain urns...either at funeral homes or maybe some other location.

What I saw on television was the choice of putting a loved ones ashes into one of those large glass balls...those gazing balls that people have in their gardens, or near a pond etc. I am sure you will find there are more options too...but just saying..try a jewelry shop. Hope you can find something that works perfectly for you and your situation.

My heart is going out to you tonight. The sadness you feel is immense, but I know you must also feel some relief that your dad no longer suffers.. and another thing is that now your mom is the one who needs you the most...besides your children and husband of course.

You are doing a good job...just hang in there. You are going to make it...one day at a time. Others will write and I know they will help you over the rough times ahead....its not easy...its always hard...and it always hits you when it happens.

Sending you a huge hug along with this note....find a corner with arms around you and have a good cry...you are a fantastic daughter. Your parents raised you well.
You are the little bit of them that lives on. You and your children.
Be at peace...for your Dad...and sending you strength for you and your mom...as you deal with the next bit of news...
sincerely,
NatR

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