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Reply by NatR
08 Nov 2012, 3:39 PM

Dear Trueheart,

What a lot you have been dealing with.  On top of caregiving which is more than the average person can deal with - now you are stressed by whats happening with your son.

All I can say is that sometimes when it rains, it pours. It is almost like we are being tested...how much can we take before we break.

I can attest to the fact that I have a high tolerance for stress...and I guess that is part of being a caregiver.  Caregivers not only have to have eyes in the back of their heads, but they also have to go without sleep, sometimes eat irregularly or badly..all in the name of taking care of their loved one...and dealing with phone calls, incidents that bring us to the point of breaking.

Well, Trueheart, you have picked a great screen name.
Trueheart sounds like someone brave, someone strong, someone who has incredible energy and passion for others.

Yes, do lean on others...do ask them to do their part to help you out.
You also need to care for yourself...and that means...maybe shutting the world out for a few hours at a time...just cocoon yourself...close a door, turn off ringers on phones, and disappear.

Nothing will change...your mom will still be there smiling to see you, your family members will be relieved that you are still in charge and still capable...but do UNPLUG.

It is really hard to do so.  But at some point we all need to just relieve our stress, run a bubble bath, sip some wine, sleep for several hours..or indulge in a movie or a good book...anything to escape the realities of life.  Life is hard, no way around it...we must walk through it.

I admire you and all caregivers, I admire those who write on this forum because they are so obviously connected, caring and thoughtful.  if it helps to air it all, wonderful....and to know you are not alone.

Thinking of you today and hoping that you have been able to take a small break from all your duties and stressors.

Hang in there - you will make it;) best wishes to your son who has also been riding a roller coaster of life..
Sincerely,
natR 
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Reply by Cath1
08 Nov 2012, 7:05 PM

Dear TrueHeart:

I'm so sorry to hear of the dramatic events that you and your son recently experienced! There isn't a Mom in the world who wouldn't relate to how your son's car accidents threw you completely off balance. Thank goodness, he was not seriously injured!

As for the gas station incident, many many years years ago when I was a young lass, I recall having had a similar thing happen to me. I asked for $11.00 of gas and the attendant mistakenly filled up my car. I literally only had $11 on me but he said he was going to call the police if I didn't pay up. It was a very intimidating experience. I told him he heard wrong and it was his own fault for filling up my car. Long story short, he was so aggressive that I had to leave my driver's license with him and drive to a relative's house to get the money and return to pay him. Today I would tell him to call the police. Live and learn. Some people just escalate misunderstandings for the heck of it and over a small amount of money as in your son's situation. I think young people are treated poorly and typecast by some people and I'm sorry your son had to go through that on top of all the other stress with his car accidents.

A friend of mine had his car totalled when he hit a deer that was crossing the highway, but like your son, he too had an Angel on his shoulder. When I drive up north, I beep the horn every few seconds which makes my kids laugh, but I was told that it alerts animals that a car is near and you are less likely to collide with one. I'm terrified of hitting a deer!

It's amazing that you have such a philosophical approach to life and it is your positive attitude that adds to your reservoir of resilience. I hope you always retain your natural sunny-side-of-the-street outlook because it does help you get through when calamity strikes! 

I see that you didn't get your dream house and I imagine that news took some wind out of your sails. Even so, you still have a way to see the bright side of the situation by realizing that the timing is not the best for you to make a big move in your life right now. Truly, you must give yourself a huge amount of credit for being able to be so insightful and wise! My Mom used to tell me when I was disappointed by life for whatever the reason, that God was saving something even better for me later on. She was very religious and though I am not, I learned to adopt her approach and have found it to be true more often than not. I so hope when the timing is right that you will be set up in the cosiest, quaintest and most charming house that exists!:)

So hang in there as life hopefully settles down a bit for you this week - fingers crossed - and know in your heart that you deserve a medal for bravery for facing each day as it comes. You are inspiring even when you express your discontent or relate to us the chaos that you must deal with in your life as your strive to make your Mom's and your family's lives calmer and more hopeful. I'm so happy it helps you to express yourself through writing for which you are gifted and I hope you know how much you are helping others with every word you write! You remind us all about the value of courage and the meaning of real depth of the heart that cares so incredibly sweetly and kindly for others. I feel honoured to be your virtual friend!. Take care of you too TrueHeart - you matter to so many others including all of us here in your virtual home away from home!:)   

With affection -hugs- xo
Cath1    

     
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Reply by TrueHeart
09 Nov 2012, 2:16 PM

Good morning and bright blessings


Thank you all so much for your loving kindness - your responses are deeply appreciated.

I am feeling my balance returning again. Shelving the idea of moving has helped. Another thing that has helped is acceptance. While I have long ago accepted that mom is dying, the experience of caring for her and interacting more closely with my family as a result of her condition is showing me how very disfunctional families can be.... My siblings are so wrapped up in their own lives that when I ask for their help, their responses indicate that they act as though I am asking them for a big personal favour. "we are all in this together" ?!?!?.
Cath1, I recall in one of your responses how you explained so very well, how everyone deals with these issues differently.
This is very very true. Because I was able to step in and assume the role as primary caregiver, my siblings have come to take that very much for granted. Even with the challenges of the past week, when I called upon them for some help and relief, they were unwilling to step up ~ it was all too incovenient for them. Earlier in the week, I was upset by their lack of willingness to understand that - YES, this road IS filled with inconveniences and disruptions. I realise now that I wasted a lot of energy being angry with them for a full day - but now, I have reached a point of acceptance.  In the process, I have also decided not to make any more excuses for their lack of respect and appreciation. I have promised myself to continue to do the best I can and to make adjustments to circumstances along the way. One of the adjustments I've made is a promise to myself to not consider asking them for help anymore - it just upsets me and doesn't work. Acceptance!
One of my nieces expressed several months ago that she worried that the family would be "broken up" when mom does die. I assured her that no matter where we all are geographically, we will always be family; and though we might not always be "together", we will always be connected by our geneology. In the back of my mind however, I knew she was expressing a valid concern.  
A good friend of mine, who lost her father a few years ago, expressed the same thing to me. Her own family has suffered a "break up" since and there are few family gatherings, minimal communications and little interest in each others' lives now. 
While it may be very sad - family is comprised of different people with different points of view and many old, worn out childhood dynamics and pre-conceived judgements. Under crisis, we have the option to grow together and put our differences aside, or not. We are each only able to work on ourselves and we cannot force others to be more conscious. 

~~~~~~~~~~~~~~~~ Meanwhile, my role as primary caregiver continues. I embrace it with joy, love and appreciation. I am detaching myself from the family drama.  
 

Last Friday, we got the results of the MRI that we did the week before. I secured a copy of the report from the doctor to compare it to the one done in July. Three months later, the conclusion of the report indicates -"no significant interval change"; which may sound like things aren't worse than they were. Even the doctor interpreted the report this way. I, however, noticed a large and significant difference in comparing both reports, and have concluded that the person writing the report meant - the tumors are still there. The details of the report indicate clearly that the tumors have grown significantly and have sprouted over to the left side of her brain too. The main differential would include "lymphoma and gliomatosis cerebri with areas of high grade glioma." In other words, her condition has progressed to the point of identification without a biopsy.
We returned to the opthamologist this week to do a visual field test to determine if it is cataracts or the tumors that are affecting mom's vision. The test indicated that it is a combination of the two. The doctor explained that he is willing to perform cataract surgery but that it would only improve her vision about 50%. He is also willing to fast track the process due to the circumstances.  Mom is very upset to learn that the tumors are causing her vision to fail. 
We return next week to perform a second visual field test and begin the process. Even if a part of me feels like we are going through steps that may prove futile - I feel it is important to proceed forward.
We had a quiet day at home yesterday. I cleaned up around the house - washed the sheets, did some laundry, gave mom a shower and put some cream on her dry skin. It was nice not to have any running around to do - no appointments, no visits.   
Today, being Friday, I look forward to two days off to be able to focus on my household, my business and my two wonderful adult kids.  

Wishing all of you a restful weekend too xo
TrueHeart  
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Reply by Brayden
10 Nov 2012, 1:37 AM

Dear Trueheart,
Your postings are just so encouraging. Today I feel emotionaly tired because of only one day of roller coaster events and you have servived how long? First I started by giving support to my SIL in the hospital at 5:30 a.m. as her father was having esophagus cancer surgery. Things seemed to be hanging on by a thread. Then at 9 P.M. I was blessed with a bundle of joy, 8 lbs. 7 oz. granddaughter. My DIL had a c-section, everything went well. That is all I could take. 
I have experienced so many family dynamics like yours with my Hospice companions. So often all the care and work falls on only one person. It may be because you exude unconditional love and you see things so differently from others. Just because they are family members does not mean that they will or even can respond like you do. You are a special gift meant for this time. The only one that may really appreciate what you are doing may well turn out to be yourself. You will always live in peace with yourself and that may be worth it all. I just hope that you get the energy to keep it up. You may also focus on a close friend for emotional support instead of family members. Please keep us up to date as we care deeply for you.
Brayden 
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Reply by Cath1
10 Nov 2012, 1:53 AM

Dear Brayden:

What a beautiful soul you are to take the time tonight after such a dramatic day to write so lovingly to TrueHeart! Your message is wonderful and wonderfully wise!

Congratulations on the safe arrival of your new grandbaby!:-)

Your sister-in-law's father and his family are in my prayers tonight. Thank goodness your daughter-in-law came through her C-Section well. I will keep her and your son and their infant in my prayers as well.

I want you to know that I will keep you too in my prayers, and hope that you have an opportunity to rest and recover from the emotional overload you experienced today, Brayden. As I pray I will give thanks for the gift of you in this world! Your gentle kindness makes a big difference to us all. Take care and have a good night - you've earned it!:-)

With affection -hugs- -xo-
Cath1 
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Reply by NatR
12 Nov 2012, 12:15 AM

To Trueheart, also to Brayden and Cath1,

Well, seems like every single one of us, no matter what side of the Forum we are on, are dealing with life issues.  It is amazing to me how strong we are.  How the human spirit defies all the stressors and we keep on going...dealing with things on the home front and also reaching out to say a word to others...

Brayden, certainly a stressful time in your personal life...I send you my best wishes as your sister in law deals with her father's illness, and congratulations on the new life in your family.  

Surely there is a lesson in this....we often write notes to those who are on the edge of their last breath...and yet...here is this miracle of life in your grandbaby's arrival.

It makes me think that as easily as life begins, with that first gurgling breath and cry...also...there is a full circle...that one day...ends with a soft sigh and a lifting of the heavy load that became too much to bear.

I am just thinking of how life, the spirit and essence of a person...goes back into the soil of our Earth, to begin to be part of something new about to be created.

I dont mean to sound preachy or crazy..but I just feel...that we all contribute something special to this place we call Earth...this life we live...it matters...and you are all sharing your stories and giving us all hope and strength to carry on.

Wishing each reader a moment of peace tonight, and the knowledge that your life, and that of each loved one...matters....we are sisters and brothers...and I am grateful that you share your stories...and your feelings.
Sincerely,
NatR
PS Trueheart, you are indeed an angel on earth.  Carry on...you have a misson that no one else can take on...you are in my thoughts.. 
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Reply by Cath1
12 Nov 2012, 12:50 AM

Dear NatR:

I've read all of your posts tonight! Beautfully uplifting are your messages and so deeply appreciated!

You too are an Angel on earth, NatR - I hope you realize it because your special brand of magic is much needed. 

Wishing you a happy week as you share your heart and your hope with others.

With affection -hugs- -xo-
Cath1 
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Reply by NatR
12 Nov 2012, 12:53 AM

Thank you so much Cath1,

You know your comments mean the world...I value your heart, your writings and your point of view.  Thank you for letting me follow you around in the Virtual World...I am honoured.
The users of this Forum are blessed to hear your thoughts...my dear friend.
NatR 
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Reply by Cath1
12 Nov 2012, 1:02 AM

"Thank you so much NatR,

You know your comments mean the world...I value your heart, your writings and your point of view.  Thank you for letting me follow you around in the Virtual World...I am honoured.
The users of this Forum are blessed to hear your thoughts...my dear friend."

Yes, NatR, I copied your words verbatim and sent them back to you because I could not say better how I feel about you!:-)

With affection -hugs- -xo-
Cath1 
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Reply by TrueHeart
12 Nov 2012, 2:54 AM

Thank you everyone. I feel hugged and loved and so supported in this forum.
Brayden, your post brought tears to my eyes. Even in your own challenging moment, you found it in your heart to reach out and soothe mine. Sending you waves of gratitude. Congratulations on the new arrival. I hope your daughter in law's father's surgery went well.
I am touched to be called an Earth Angel, thank you NatR and I know I have found an entire circle of loving Angels here. I am grateful to you all.

I have come back to a place of peace within  ~ about my siblings ~ again. I spent some time with my sister today and I realized how hard this is for her too. My brother will be around a lot this week, which is welcome - they both noticed this weekend how much of a change there is in mom since they last saw her. They were shocked and disturbed. Suddenly, we all sense the dread of the end and the thought of life without mom is a hard one for all of us.  
At my sister's tonight, mom had a seizure. It was the first one since September 6th. I called her on the phone tonight and she sounded odd - she was unable to speak when she had the seizure - which is a new dimension of her illness. On the phone, her voice sounded weak  and uneven. The dilantin levels at the last blood test showed levels way above the therapeutic level, so the doc reduced the dosage from 400 to 300 mg. It could be that the levels dropped too low and a seizure got through, or that the tumors are growing faster suddenly. I don't know. Her physical nature has quickly deteriorated this past week. 
She started calling her tumors the Three Stooges, Curly, Larry and Moe. She maintains a sense of humour along with her grace and dignity ~ though diminished. She really is an amazing lady. When we were all in high school, mom was working full time as a teacher and going to university at night to get her degree. She managed the house and the meals all along. All my friends thought she was so cool. She travelled to Europe twice two summers in a row - the first time for a short 2 weeks - but the second time, she went for 6 weeks. Ha! The family really had to step things up. It was a point of liberation for my mom. I was already living away from home but my siblings and my dad were still there. When she came back, everyone started to pitch in a lot more.

The nurse has her at 40% now. She was at 90% in August. This seems to be the all important gauge for CCAC and the various levels of the eligibility criteria.  
I know I can't get her back and I know she is leaving us soon. I wish it didn't have to be so. I always thought she would live well into her late 80s or early 90s. I'm already missing her.


It is so nice to see the interaction of love and compassion and friendship in this thread...and to echo NatR's and Cath1's    words - Your comments mean the world...I too value your hearts, your writing and your points of view. Thank you for being part of my Virtual World...so much gratitude dear earth angels.

xo TrueHeart  

  
 

     
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