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Reply by lilbear
19 Oct 2012, 5:44 PM

Looks good.... :)


First I want to thank you for being here and replying to my message.  This is the very first time I have reached out to anyone for help/support outside of my family. 
After reading your post Cath1, I realized that my daughter probably does have some idea that "Papa" was Santa.  I am thinking of sort of telling her that the real Santa is very busy and Papa was helping him before.  That way, maybe it can be a special shared moment to show her how special she is to Papa that he would do that for her.  Maybe we can even gather past years pictures and make a special album for her?
I am glad that you ladies understand.  i am constantly being told that I worry too much and "over think" everything - but these are my kids!  They need to be taken into consideration though all this too.  I can't remember if I mentioned that my parents live with us....that means they see them all the time so it is very significant.
I think the hardest thing right now is feeling like we are all living on the edge...waiting for what may  happen and when?  I know my kids feel my stress and of course, they have seen me break down - even though I try not to very much around them.
I wish I knew what to expect.  Sometimes I feel so alone...even when I hardly ever am.
Thanks for 'listening". :)       
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Reply by Cath1
20 Oct 2012, 11:02 PM

Dear lilbear:

I am so happy that the posting issues have been resolved and you could post your message without any issue!:) Thank you for your feedback! I'm glad to hear that Colleen's advice and mine inspired you so quickly to come up with a great solution to your Santa dilemma.

Thanks as well for sharing more about your situation. The fact that your parents live in your home with you and your children is indeed very significant to your situation. Don't worry about what others tell you about how you should be thinking, feeling or reacting. Your thoughts and feelings and responses are your own and you have every right to express yourself in a manner that is true to you!

As Tian (a member of Virtual Hospice) taught me a long while ago and which I will never forget, there is no "normal" really when it comes to dealing with life, rather all thoughts and feelings and reactions are vaild. Every individual reacts personally in their own way to situations. What I have learned from experience is that we cannot be conveniently predictable to pacify the concerns of others when our loved ones are facing serious illness and perhaps death. Trust your instincts and please feel welcome to share any worries you may have as your Dad's illness progresses. You will not be judged here among your Virtual Hospice companions. We are your aliies.

You are right, lilbear, you are all living on edge and not knowing quite what to expect and when. That's a hardd place to be and I understand your anxieties. Your Dad's deteriorating health of course affects not only him but your whole family, including you! I can relate as a mother to how you want to protect your children and spare them from having their innocence stolen unfairly by such sad realities that you cannot control. I believe that while children may be strongly affected by a grandparent's illness or death, children also often have the ability to process and express their feelings and fears naturally when gently encouraged and reassured by parents and/or other loving adults in their lives. I guess, from what I have witnessed in my own family, I have found the youngest among us to be the most accepting of the Nature of life and death.  Kids can teach us all about acceptance and resilience, I think.

In my view, your tears and the expression of your grief in the presence of your children is a beautiful thing because it teaches them that you are human while it also shows them that you have the courage and integrity to be vulnerable as circumstances dictate. In those moments when overcome by strong emotion, you are showing them you have very deep feelings and that it's okay to express them when in a safe place surrounded by those you love and trust most. What a wonderful example you are for your children, lilbear! You are balancing everything as best as can be expected in the situation and in my opinion you are indeed very strong!

Your parents and children are very fortunate to have your sweet love, your care and concern. Trust that you cannot make any mistakes as there are absolutely no rules to break when a loved one is seriously ill and dying. Follow the wisdom of your heart and trust it. Know please that you will not be alone! We are here to listen and to share with you our guidance and support as you help your family go through this hard journey. I know you will be a loving light for your Dad, your Mom and for your children along the way. We are here for you!

With affection -hugs- xo
Cath1  
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Reply by lilbear
21 Oct 2012, 7:32 PM

Cath1,
You manage to epress so eloquently my thoughts and feelings.  I cannot thank you enough for your support and reaching out to me.  I needed to hear what you said even more then I think I realized!
I finally feel like someone out there gets me! :)
It all gets so very overwhelming at times and the juggling/balancing act is tough.  I sometimes feel so pulled in all different directions!  I feel guilty too, because I want to just scream and be left alone.  I am tired of having everyone turn to me for help and support.  I want a life too!  But, then I think - calm down...don't be selfish, my kids need me and my parents need me and my husband needs me.  But, I don't know who I am anymore.  All my decisions seem to be based on what makes everyone else happy.
I do not want to come off as sounding like a martyr and I know others feel this way too...I am just so tired and scared. 
How are you dealing with it?  Some days I just want to get in my car and keep driving..although I know plenty of Moms who feel that way without the extra stress of an ill family member :).
You make me feel like I am going to be okay...and I thank you from the bottom of my heart.
I am hoping that my kids are as resilient as everyone seems to think they will be.  I don't want them to see my Dad when he does get bad.  I want them to remember "Papa" not a sick old man.
Okay, I have to go as I am going to cry and since I am at work that's hard! ;)
TTYL - >Hugs<
Paula          
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Reply by Cath1
21 Oct 2012, 7:56 PM

Dear Paula (libear):

Thank you so much for your kindness! You are right, I do get you and I care about how you are feeling and coping. You are also right that you too need support in this situation as you have many people depending upon you to support them! I'm so happy you acknowledge this as you too are important and it is not selfish to express your needs and feelings. I know what martyrs sound like, and you don't sound anywhere close to being a martyr! You are hurting and frightened and feeling overwhelmed. I do understand.

I cannot in this moment write more to you, but I will try to return later to add more thoughts. I hope others will not only read your words, but will add their wisdom and perspective to the conversation as well.

I just want you to know in the meantime, that I hear your heart breaking and I feel your pain. As you cry today know that there are many people with you in spirit and enveloping you with compassion. I'm just one among many.

Until we connect again, know that you are not now, nor will you be, alone!:)

With affection -hugs- xo
Cath1          
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Reply by Cath1
22 Oct 2012, 2:37 AM

Dear Paula (lilbear):

I have been thinking about your question, "How are you dealing with it?" I am not now in a situation at all like yours, but when I think back over the years to when I was a young mom and wife, and when my mother was living, I remember the stress I felt many times and it was hard to go through. It was tempting at times to fantasize about getting in my car and driving off into the distance where the grass grows greener! 

My late mother had a mental illness since I was a baby, and by the time I was a young teen, I had assumed the responsibility for helping her when she had episodes of illness and hospitalization. When I was later married with kids, our lives were often disrupted and complicated by my Mom's illness and I had to balance my family's needs with hers. It was a challenge.

I recall one particular Christmas morning when I had to take my Mom to the hospital. She was having very distressing feelings and delusional thinking at the time. She was staying with me and my family for the holidays as was the typical situation with us. My Mom awoke me in the middle of the night on Christmas Eve, she was frantic and feeling very agitated. I knew I would need to take her to the hospital in the morning, but since it was Christmas I was hoping her mood would magically improve as sometimes it would when a crisis had passed. I was upset inside but felt I could not tell anyone how overwhelmed in fact I felt.

I was thinking about my young children and how in a few hours they would awake with joyful anticipation of Santa's arrival. I could not let their Christmas be ruined, and yet my Mom needed my help too. I was torn. Not having a solution that would work for everyone, I tried to calm my Mom. Thankfully, I was able to persuade her to agree to go back to bed. I barely slept a wink that night as she got up and came into the room where I lay with my husband several times. Eventually she fell asleep and my children awoke to greet Christmas morning. They were overjoyed and filled with excitement. I watched them as they opened their gifts, their small faces lit up with big grins. As I watched them I knew that when my Mom got up I would have to leave them with their Dad for most of the day as I and my Mom would have to go to the emergency room and I knew she would again have to be admitted to the hospital. It was a very sad and stressful day, but I knew then as I know now, life is sometimes painful and we have so little control over events so we have no choice but to adapt as best we can.

That Christmas morning, I left my children content to play with their new toys and their Dad, while I ensured that my Mom got the help she needed to begin her recovery. I felt heartless to leave my Mom in a hospital on Christmas Day, but I knew from experience how quickly the symptoms of her illness would progress without medical intervention. I had such a lonely feeling as I walked to my car to head home to finish cooking our Christmas dinner. My children knew Nanny was "not well" but they never really knew that much about her illness when they were little because I protected them as much as possible from having contact with my Mom when she was in the throes of a fullblown psychotic episode. I remember how my mother's demeanour and appearance would change when she became ill and when I was a child it was for me at times frightening to see the transformation, so unfamiliar my Mom suddenly seemed to me when she was ill. I did not want my children to experience that side of my Mom, the Nanny they adored! 

I guess I am sharing this with you to help you understand that when you are in a situation such as yours, with your parents living in your home, your father seriously ill, young children and a husband to care for, it is extremely difficult to deal with everything and feel good about it. Our circumstances are different Paula, but we have both experienced trials that have tested our belief in ourselves and our ability to handle life's difficulties, yet we must continue to cultivate confidence and hang on to hope for the future so that we will endure, I believe! I have found that with every challenge I have yet faced in life, no matter how hard - even impossible - it seemed at the time, I did find ways to cope in the end. So will you! You will grow in compassion, patience and wisdom every time you rise to face another day.

I hope you will feel supported and that you will accept that your best effort is good enough! You cannot always give your best effort to others in every moment of every day and that too is fine! Your heart is in the right place, Paula and those you love know this without you having to explain it. Ask for help, understanding and support, especially from your husband and let others know that you are not superhuman. Simply being human is hard enough as it is!:)

Wishing you peace in your heart this night, Paula. Tomorrow is a new day. You will get through it because I sense that you are far more capable and resilient than you yet know! I am here for you.

With affection -hugs- xo
Cath1         
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Reply by MDuchesne
31 Oct 2012, 9:12 PM

Your father playing Santa is a real legacy.  This is a very very special thing.  What would he like to see happen?  Is it a tradition that he would like see continued?  Would it bring him comfort to know that his legacy would go on and that some day his grandchildren would know that he was santa for many years and that he was the one that started the tradition?  If he would like to see it continued is it possible to have someone else commit to this duty each year?  If yes, who would he like to see do it?  Too me, it would be a real honor.  Your father is obviously a really great guy who has created some great memories, especially during the holiday season. 

Michelle
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02 Nov 2012, 8:31 PM

Hi Michelle and welcome to Virtual Hospice. 
Including Lilbear's father is a great idea, if he is able.

Paula,
How are you doing? We are thinking of you and your family.
Colleen 
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Reply by lilbear
03 Nov 2012, 12:13 AM

Hi...
Thank you for all of your positive thoughts!  I think trying to include my Dad is a great idea, but I must say that I am the one that would have a hard time seeing somebody else filling his "costume" at Christmas.  
Talking with him about it proves quite difficult as he still talks very much that he will be here for a long time and it is hard to bring anything up because I don't want to derail his positive thinking.  Who knows? He may be right... :)
This past Monday, we received some positive news!  We were told that the cancer they had seen in his head is in fact benign!!!!  It is a big relief, but we know he is not out of the woods.  He has very little strength as due to the rapid weight loss he experienced when he was in pain and not eating, he has also lost most of his muscle.
The thing is, I know the benign brain tumour thing is great...but it leaves a lot of questions still.  Most days we can get by almost feeling "normal"...but there is always that 'other shoe' and we are waiting to see when it will fall!
I really appreciate all of your input and am so glad to have found you!

Paula      
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Reply by Cath1
09 Nov 2012, 1:01 AM

Hi Paula (lilbear):

I'm thinking about you tonight and wondering how your Dad is doing this week and how are you coping? That's wonderful news that your Dad's tumour in his head proved to be benign. I hope he will regain some of his strength and hope with that positive development.

Please write again when you have a moment. Wishing you courage and peace.

With affection -hugs- -xo-
Cath1     
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Reply by lilbear
09 Nov 2012, 4:45 PM

Hi Cath1,
Thanks for keeping me in your thoughts.  Smile
My Dad is doing pretty good, but still not gaining much strength.  My Mom has to help him up from sitting as he just cannot seem to get the initial "leverage" to get up.  That's hard on my Mom and him.  She has hurt her knees and I am sure it is from always having to get up and down for him.  There is just no resting.
They came yesterday to install some extra supports so he can get up off the toilet and they added lifts to a chair so he didn't have to go so far down.  So far that is helping.
I know I keep saying this, but I think the hardest thing is not knowing what to expect.  My Mom has been told that it will ultimately be her decision when to put him back into the hospital.  That's an awfully hard thing to face.  How do you know when?  Undecided
Will he get stronger...or are we being naive?
I haven't been able to see him for a few days even though he lives right downstairs, as my kids and I have been hit by terrible colds and I have hurt my leg somehow.  I was afraid I had a blood clot (as I have had one before), but after a trip to ER they said it is a muscle spasm....but it won't go away!  Amazing, how everything always happens at once!  Wish I could get better so I can go down to see him and help out again.

Talk to you soon,
Paula   
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