Monday, November 21, 2011

Mourning Living Losses

Deb: Peaks and valleys are the best way to describe what my family has been going through lately. We are at that stage of life’s path where we are faced with the fork in the road. There are no signs pointing the way, no Lonely Planet guide giving us tips. We are hunting and gathering information and hoping to God that the right decision is arrived at.

My Mom’s foot has steadily improved and she is ready to be discharged from the hospital to further recover. But recover where?

The month-long stay in the hospital—between the trauma, drugs and the prone position—has produced both a pressure ulcer (bed sore) and a total loss of strength. She is now what they call “a two person transfer”. She can no longer transfer herself from bed to chair or chair to toilet. So of course the inevitable phrase “nursing home” reared its head. A blow to all of us and the specter of it has caused sleepless nights, tears, and endless circles of discussion. Add to that the sickening exposés on nursing homes on the front pages every day. The timing could not be worse.

My particular pain, which has itself developed like an internal pressure ulcer, has been in the unwanted job of holding Mom and Dad’s future in my hands. Honestly, I can deal with anything, but the agony of knowing I might make the wrong choice has been more than I can bear. I have spent endless hours researching and talking to our stellar team of support at St. Mike’s hospital who are working tirelessly to make this transition an easy and correct one. St. Michael's hospital is called Toronto’s Urban Angel and I could not agree more.

A few days ago I took my Dad home after a hospital visit. We had a particularly frank and painful discussion in the car and when I left him he said with tears in his eyes, “Debra, we trust you implicitly.” Any daughter would love to hear that but, while I was struck by the sentiment, I could not help wanting to run from this responsibility of trust. I spent the night thinking about this and how it was overwhelming me, and suddenly it hit me. I do not have the responsibility. I have chosen wrongly to own the responsibility. The only responsibility I have is to share with my savvy, very with-it parents, every single thought, every single option, every single fear. They deserve nothing less.

I realized, somewhat stunned, that this was just occurring to me. The simple fact is, we are all in this together. I was trying to do what I always do, trying to “handle it all”. I was putting this on myself.

The good/bad news in this scenario is that Mom and Dad’s bodies have betrayed them. Their minds have not. They can take all my information and offer good solid opinions. My job is to gather, shape, and offer it up. They do tend towards not wanting to cause me grief and stress, so I must keep it on track or they would just take the path of least resistance. I had this honest talk with them and Mom said, “Whatever happens, Deb, it will be because it is the best for us. This is a decision we will make together and it is not solely on your shoulders.” And a team was born.

It is still painful as we try to jump hurdles and dodge medical bullets. But I no longer feel I am falling down the rabbit hole. This past Friday we turned a corner. As soon as I identified the source of the pain, I think we all gained strength from the knowledge. The fact is, knowledge is power crept up on me again for the fiftieth time, bringing with it peace and purpose. How could I have missed that the agony was coming from mourning? We are mourning. And we have done it many times before. So why doesn’t it present itself to me each time with, “Hi, it’s me again, mourning.” But, like Dorothy, I seem to just have to learn it for myself over and over.  We have mourned before. We mourned Mom’s loss of independence when she had the stroke and we rose above it, turning her lack of independence into freedom. We have mourned these last few years as Dad has lost his independence and we continue to work towards good healthy solutions. And I look at them as my Dad takes Mom’s hand in the hospital as they say goodbye for the night. They are going strong, forging ahead. This generation continues to astound me with their strength and fortitude.

I guess the bitterest pill for all of us to swallow, is that we hold the secret of who they were. The care team, despite their best care and attention, see two old people at the end of their lives. The other day as an O.T. was giving me the results of my Mom’s cognitive test, I started to ball like a baby. The O.T. said, “I am so sorry. I didn’t mean to upset you. Do you want me to stop?” I said through sobs, “NO, I need this information! It’s just that, I wish you knew them, really knew who they were. You don’t and it’s breaking my heart.” My parents were the ones! They were the hosts, the entertainers! They were the centre of their circle. My Dad would cook like a pro and my Mom would dance the night away. They were the last to leave every single party! And it’s killing my soul that no one knows this. I wanted to scream, “Please, see this!” 

But I didn’t. It’s not their job. But I know it, and everyone who knows them knows it, and I guess that has to be enough.

The other day as we sat in Mom’s hospital room, my Mom said, “Jimmy, did you ever think we would end up this way”? To which Dad said, “No I didn’t, Anne”. I said, “Would you prefer the alternative? You have lost all your friends and you are still here.” As sobering as that comment was to digest, they sat for a moment and then smiled, knowing that despite all they are facing, they are happy as hell to be here. My parents love life in a way I wish every human creature did. They deeply mourn their lost family and friends but are in no hurry to join them, even at almost 85 years of age.

One of the Care Team experts, in an effort to assess how well I was doing as caregiver, asked me three questions. She said:

1. Are you feeling any resentment around taking all this on?
2. Are you feeling guilty?
3. Are you stressed?

And I answered.

1. I am not feeling resentment. I am so grateful that I have Mom and Dad and it is my great honour to care for them and about them.
2. I do not have any guilt. I have no reason for guilt and it is a waste of my time.
3. Hell, yeah, I’m stressed!

This week I would answer, “Hell, yeah, I’m stressed, but one tiny epiphany is melting it away, one crisis at a time.”

We will move forward together to make the rest of their life a party. Because as fate would have it, they are still the last to leave.

Barbara: Deb, I just want to thank you so much and from the bottom of my heart. I can’t tell you how, on the one hand, it’s hard to see you go through this and, of course, even harder to see your parents go through it, but on the other hand, your experience has also taught me an incredibly important thing or two.

My parents are all—knock on wood—healthy right now. But I know that can change in a flash. I find it interesting and important to remember that people—even those in medical crisis—are often capable of making, or being part of making, those critical decisions that will affect them the most. Of course, I also get that a lot of people can't––or won't––make good or useful decisions for themselves. But let's assume this is a case by case. If at all possible, they should not be outside that discussion. And we can't take on all the guilt and pressure that comes from making these hard choices. How brave and forthright of your mom to say it in so many words, that she takes responsibility for choosing whatever fork in the road you all travel down. And how lucky your parents are to have such a loving, faith-full Dorothy to hold their hands along the way.

87 comments:

  1. Deb, I'm nearly in tears. Having been exposed in this type of environment, it's just one of the mere reasons I could not work in such a place. I LOVED the people, don't get me wrong.

    From the bottom of my heart, I am so sorry that this has happened to your mom. Unfortunately, what makes me the most sad is that the pressure ulcer could have been very easily prevented.

    On another note, my campus is on lockdown due to a shooting. I don't know if anyone was hurt, but we're stuck indoors until further notice.

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  2. Oh my god, Kelly!!! Please keep us posted and let us know when you get out safely. I can't imagine anything more frightening! love love love xo

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  3. Kelly this is awful. Are you okay? Are the police there? Sending love.

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  4. Deb, I hope your mom gets better. Your post makes me cry.

    My mom had been in pain over the last years, couldn't walk properly, and we were glad when she got a new hip.
    But then...a few months after the surgery, she had an infection, which crushed the nerves in the spinal cord. She's now paralyzed (with only a little hope left...). It was such a shock for me. I still can't believe that this happened. Sometimes I just cry my eyes out.
    Most of the time I try to be strong for her. I support her in every way. It's exhausting...I'm tired. I'm worn out...I don't have any energy left...At least she can stay at home.

    It makes me so sad, because my mom doesn't deserve this. After all those years in pain, she deserves to walk. She's a nice and lovely person, she hasn't harmed anybody...

    But life is weird sometimes. You can't change it. You have to accept it.

    And your mom is great. You won't make the wrong decision, because you care and love your parents. And they know that. It may be difficult and hard, but you will cope with it.

    I'm sending my best wishes and hopes to you and your family. Please take care!

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  5. Yes Deb. We're ok. All the students were advised to stay inside until further notice. Yes the police and the campus security are both involved.

    Will update as soon as I know more information.

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  6. It is the big joke to our parents "that you need to be nice to us, because we pick your nursing home", but little do people know the pain and stress that this decision creates. I work in a retirement home and see so many adult children go through this heart-wrenching decision. I too, have been reading the articles about nursing homes and I now watch my actions even closer. It breaks my heart the things that occur due to funding cuts and overworked, and underpaid staff.

    Deb - I love that you are supporting your parents and keeping them as independent as possible. You have such a huge role, but still allow your parents to have control. In time, the employees at the nursing home will get to know your family and who your parents were, are and will become. You are in my thoughts and prayers as you go through this tough time.

    Laurie

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  7. Just received this. Unfortunately, one is confirmed dead. Unfortunate. Just sad.

    http://www.lex18.com/news/one-killed-in-double-shooting-in-berea/

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  8. Thank heaven Kelly, keep us posted. Laurie, I appreciate this comment as you clearly know what it feels like from another point of view. We are so hoping that it works at "home" with homecare, but if not, you bet they will know our family! We will all be in it together.

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  9. Becki, what a heartbreak! I'm so sorry about your mom. But, sadly, unfortunately, you're right: you can't change it. Thank goodness she has you there to lean on!

    Laurie, that is excellent advice -- if the team knows you well, and knows you to be kind and involved, they will probably react in kind.

    Kelly, I am gobsmacked. I can't believe you are in this situation. Please please take care and keep us posted! xoxo

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  10. Oh no Kelly, just awful. Horrible. My last comment came after your update. I hope you realize that I wasn't saying "thank heaven" after your report of one dead. Just an internet timing glitch.

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  11. Deb, all I can say is that you have such an amazingly strong spirit and soul for your parents, and I pray that it will carry you through this rough time.

    As of now, still nothing about the shooting. Classes have been suspended until noon, but if the guy still hasn't been caught I sure as hell ain't going anywhere!

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  12. Deb, you're posts continue to mirror our life, just a step or two ahead. I hope to have your wisdom, compassion and sense of humour when the day comes (and it will soon) that I will care for my Mom and Terry's parents.

    What a gift your blog is.

    Thank you ladies.

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  13. The events of today and this post have really put things in perspective for me; we never think anything like this will happen to anybody in our family or to someone in a small community.

    Then it does. So what do we do?

    I for one, when I go home on Wednesday, will hug my folks and tell them I love them. Deb, I'm assuming Colin will be back home soon. Give lots of hugs and tell him you love him :] I will pray for you and your dear mother as your family makes this transition.

    If you all could pray/send good thoughts/whatever it is you do to the family of the victim in Berea, Kentucky today.

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  14. Kelly, I'm sorry to hear that! :( Hope you're all right. Sending prayers!

    You're right!
    You never know what will happen. Life can be over too soon...

    I try to live now. Try to do the things I want to do since my mom's dreams have been destroyed...

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  15. Thanks DKO, what lovely words. Yes we will all be there won't we? The other thing it really put me in mind of, is making sure we have security for when it happens to us.

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  16. Well said Kelly! And yes my husband is home (yesterday) and has already kicked in to the helpful supportive guy i know and love. Becki, living now. That's the key isn't it? I'm so sorry about your Mom. It must be awful for you. Thanks for the prayers.

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  17. Kelly -- truer words... Which makes me think, Becki, of your self-directed question the other day of whether to believe in your writing. Here is another reason why you must must MUST. You never know what can happen. Eat up your life!

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  18. It sounds like. Your parents are very much fighters Deb. I hope both your mom and your dad just gets stronger and stronger each and everyday.

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  19. I can't wait to go home and hug my parents. And I agree with my sister as well. :)

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  20. oh Deb, having taken that ride, I want you to know that my heart goes with you. It was the most difficult time of my life. I know what you mean when you said, I wish you knew them. That is exactly how I felt too. But, I am so glad that you see the honour in all of this. That is something that I shared too, and still sustains me in my memory of my parents. love love love denny

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  22. Accidentally posted the same link. Sorry. Here's a little more info about the shooter. What a terrible situation.

    http://www.lex18.com/news/police-release-more-info-on-berea-shooting-suspect/

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  23. Deb, this is so hard to read and watch as a child when parents age. My Mom at 84 has been under the care of caregivers for over 5 years now. She is still in her own house unable to do anything on her own. I am assuming you are an only child. Thank goodness my sister and I are on the same page. To move my Mom would involve too much stress so as long as she has the money (thank goodness) we have hired help. It has been a constant challenge to make sure all is well at her home. She has long since lost most of her short term memory and therefore visits are filled with so What's New after you have spent time telling her over and over again. Aging is not a pretty picture when your mind goes. I am happy for you that your parents can share in the decision making. It makes it less stressful because you share your thoughts and work out a solution together. I am glad your mom is well enough to understand and she has your dad for backup. My mom has neither. So my sister and I must make every decision.

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  24. Oh, Deb. *sigh* I don't know what to say. Just please know that, as you are supporting and loving your parents, there are so many of us who love you and will support you in any way we can. *fierce hugs*

    Kelly - Ugh. Wednesday cannot come soon enough! I hope they capture the shooter NOW. Please let us know when you've come off lockdown. :(

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  25. OK, please excuse me while I go off topic for a few seconds, but I need a safe place to pitch a rant. I find myself suddenly in a rather bad mood.

    *rant on*
    If you have a baby and are riding in a car, put the baby in her car seat. And, no, I don't care that we "aren't going very far," and, NO, it is not "OK this time." I have no problem with giving you a ride. I'm glad to do it. But, the baby rides in her car seat. Period. Shut up, and agree. I'm not budging on this. Ever. At all.

    And, that means put the base of the car seat into the back seat and buckled in correctly and then click the carrier into the base. Do not just haphazardly MacGyver the seat belt over the carrier in a sort of strapped in way such that the whole car seat tips over loosely in the seat belt.

    What do you mean the car seat base is still in the box and you've never installed it and used it? WHAT THE FUCK IS WRONG WITH YOU?!?!?

    Put the baby in the car seat, AND put the car seat straps onto the baby. Buckle her in with all of the straps. Just laying her into the car seat isn't doing any good. I don't care if she doesn't like it. I don't like paying the electric bill, but I have to do it. I don't care if she fusses. She'll get over it. I don't care if it messes up her dress or her jacket. I don't care if you find it a hassle to do it. Suck it up, shut up, and do it. All of the straps and buckles, not just the easy one. And, yes, I do notice you hiding the 2 shoulder straps behind her back. And, I don't like you at all when I see that.

    Suck up to me all you want with all your, "You're a safe driver. It'll be fine. I trust you. She won't get hurt." OK, that's nice, but what about all the idiots on the road? Who's to say someone else won't hit us? And, have you not noticed the rain and the fog? Every word that comes out of your mouth trying to ingratiate yourself to me and sway me only makes me dislike you and have no respect for you. This is your daughter, for God's sake! Why am I more worried about her safety than you are?

    Also, do not expect to ride around holding the baby in your lap because you like to hold her while you give her a bottle. You don't nurse. You bottle feed. You can reach over and hold the bottle for her, or you can wait the 10 minutes till we get where we're going. Guess what, if you nursed, you'd be waiting. Get over it.

    And, you had better sure as hell not even dare to ask me to give you and your baby a ride unless you are going to follow these rules in my car. I love you and your baby too much to be an accomplice to such negligence and stupidity.

    Do not complain about me expecting this of you as a mother, or you will find your ass sitting at home because I'm not even going to drive you down your driveway.
    *end rant*

    OK. Thank you. Just needed to vent that.

    It hurts to be disappointed in a friend. *sigh*

    Back to the post topic. Sorry. But, thank you. *boiled lobster red face of frustration*

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  26. ^^Oh geez, really Rigel? I think that, you know how you have to take a test in order to drive a car? I think sometimes they need to offer tests for parents-to-be. *facepalm*

    That's just so dangerous!!

    Berea's still on lockdown. The dining services are bringing food to us. Please pray/send good thoughts to our campus, a lot of students are really scared.

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  27. Barbara: You're right! And my mom could have died, so I'm happy and thankful, she's still alive!

    I will. I won't give up! Ah...thanks for giving me some strength back!

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  28. K & H - I'm msg'ing Ruth right now to get y'all on the prayer list at her seminary.

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  29. Pandora radio is a beautiful thing. I get through my hard times through music. This song is what is playing right now and I would like to share it with you all. Still on lock down; food is coming to our dorms. Love you all :]

    http://www.youtube.com/watch?v=ZmdP7NzYWP0

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  30. Thank you all so much. Your sweet souls make me happy. :)

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  31. *fights urge to hop in car, drive over, and scoop up K&H*

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  32. Deb, I've read a number of your posts, and they have all touched me in one way or another, but this one really is particularly poignant. Your spirit and positive attitude (which you have clearly inherited through your parents), are such an inspiration, and are helping me cope with my current situation.
    8 weeks ago, I left my family, happy and healthy, at home, to go to university. Just 2 weeks later, my dad told me my grandmother was in hospital with a broken leg. I went through many emotions; sadness, obviously; but I also felt an overwhelming guilt, at leaving my dad at home alone while I was away for the first time (my dad is an only child and, after the death of my mother, a single man).
    Whilst Nanna is improving (even after being given the wrong blood type in a transfusion, but that's another story), Dad and I are aware of the fact that she is still unable to walk, and may, for at least some time after her hospital stay, need care. However, Dad does not fear this; he has simply said that, when the time comes, he will help his mother however he needs to. But this is not because he needs to; rather, it is because he loves her, and wants the best for her.
    I have days where I perhaps dwell on this too much, and get upset. But your post has both reminded me that there are countless others in the world in similar situations; and that, with courage, compassion, and a positive mentality, we will get through it.
    I wish you, your mother, and your family, the very best.
    Sarah, Lancaster, UK x

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  33. Rigel: a worthy sideline rant if I ever heard one.
    Becki: so good!
    Kelly, sweet, sweet Kelly, all thoughts to you. Holly, stay happy!
    Rigel: don't go, but oh that we could, huh?
    Sarah: oh, such a heartwarming comment. Deb is on her way to her mom right now and will so appreciate getting all these thoughts and wishes and shared experiences!

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  34. Hey Rigel, don't forget my roomie too!!! :P

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  35. Oh, Sarah. *sniffle* *heart strings tugged*

    Barbara - Of course, I won't. Couldn't get back in time to pick up my son from school, and only have the gas $ for there but not back. But, the nudge is there, of course! How could it not at least occur to me?

    H&K: Ruth got my email and found me on GoogleTalk just now. She has added Berea/Lexington to the list in chapel prayers at her seminary today.

    Deb: Always, ALWAYS sending warm fuzzies your way.

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  36. Thanks so much Rigel!! We are still on lockdown until further notice. Boredom and antsy-ness are starting to kick in, lol. Love you all!! <3

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  37. Holly - Why am I suddenly envisioning my car clown-car full of college students and with a couple strapped to front and back bumpers like all the deer carcasses being transported lately? LOL

    I wish y'all were over on this end of KY. If y'all were at, for example, Murray State, I'd have you eating spaghetti with me and kiddo by sunset.

    *grumbles* Between the horrible weekend I had at work (really lousy) and the crappy way today is sorting itself out to be, it is an incredibly bad thing that I'm aware of the leftover (from son's birthday cupcakes) chocolate icing on the fridge. It is singing a siren song to me.

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  38. Holly -

    This is the type of boredom that can breed delightfully creative mischief. Get busy on that! :D

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  39. There is no longer any chocolate icing here.

    Oh, well.

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  40. I've just returned from the basement of my dorm with a bag of pretzels. I say, for now, mischief managed! ;)

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  41. Rigel, LOL!!!!!!!!! I called the MRI technician this morning (getting more scans done tomorrow) and she told me the hospital is on lock down too.

    The only thing I could think of is...what if someone is getting discharged today?

    Thank you all for lightening our moods. :]

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  42. I see, and now I know.

    The knowlege only adds to my blubbering like a baby. Yes, blubbering.

    Sometimes, that's all we can do.

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  43. Holly,
    You're confined indoors, bored, and have computer access. Must I state the obvious? Really? Do I have to be the one to go there? *sigh*

    Really?

    OK.

    I'll go there. *hangs head in shame* I only hope that, since you are at a Christian college, there aren't obnoxious filters on your net access. *mutters something about censorship in a university setting being unethical and contrary to academic freedom*

    I guess I have to be the one to intervene with the obvious. *face red* Munch on your pretzels, and stop being bored. Here:

    http://www.youtube.com/watch?v=7OeQdSJ6stY

    http://www.youtube.com/watch?v=wV_lQVgolbQ

    http://www.youtube.com/watch?v=dotjkFEaVd0

    http://www.youtube.com/watch?v=QVP_DGTKvEc

    http://www.youtube.com/watch?v=gsTsLQH2RwE

    http://www.youtube.com/watch?v=cvDja3WG1vU

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  44. heehee, yay, whose line clips!! Kelly and I are actually watching Whose Line now! :D

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  45. Deb, I once again marvel at how much patience you have to deal with everything, and to have parents who are willing to mull over the options with you and make wise, practical decisions regarding their care. I think some of the care-givers you're encountering do know a bit of who your parents are, because, while they're not dancing around the room, their wisdom, their strength and will to continue on, and their complete love and dedication to each other are obvious to all.

    I don't exactly know what's going to happen with my parents if/when these circumstances arise. Several years ago, in a discussion about the house, my dad said he was all set and ready to move into a retirement/elder community-living situation.

    In a separate discussion with my mother about the house, she said, "Oh, we're going to die here." So they're not even communicating with each other. Great.

    It's turning out that my dad had a decent idea of what was to come. He's heavy and his knees are going. Drs have recommended knee surgery, but he said no, and the reason is the house. We are in an older two-story house with narrow staircases and only one bathroom which is, you guessed it, on the second floor. He's on several meds and actually told his dr to take him off one so he could take Alleve, which works well for the pain. He's accepting what's going on, at least as far as we know, because communication is not a strong suit in this household. Yep, we'll be in trouble when decision-making time comes around.

    I can't go into detail with my mother. Suffice it to say, "martyr" is the word I use to describe her. This is where I marvel at your patience, Deb. I can not deal with my mother right now, nor have I been able to for "a while."
    My brother used to work in a nursing home, and will take my parents into his house before he ever sends them to one. My sister-in-law and I have accepted that she and I will be the most practical decision-makers, 'cause she knows he won't be able to handle it.

    I hope the hard decisions are a ways away, because the "we" who'll have to make them together aren't currently on the same page. Lord help us.

    Continued good wishes to all of you, Deb. Hang in there, lots of people care.

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  46. Sorry...Kelly was still logged on my computer. The above comment was made by me. *glues self to computer and watches YouTube clips from Rigel*

    ^__^

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  47. Deb, I'm so sorry. I'm sending prayers and love your way. You are amazing. Your parents are amazing. I wish for each of you peace in your hearts and clearness in your head for the decisions that must be made.

    After reading this and Deb's stuggles, the shooting that Holly and Kelly are dealing with and everyone else who has loved ones dealing with their own difficult issues, I was needing some chocolate. But I have to say, when large quantities of chocolate aren't available, Rigel's clips are the next best thing. A good laugh does wonders.

    Love and peace to you all!
    Molly

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  48. Sorry, Molly. I already finished off the leftover chocolate icing. ;)

    *sigh* And, now, I am off to fight, yet again, with an anti-car seat mother. I understand that she is from another country and has been inculterated with a different set of child transport standards. But, dear lady, you have moved to the US. So, live in the US. By our laws, by our safety standards. Don't like it? I'll truly miss you and your family when you go back home. Why is it that I'm being made out by other friends to be the unreasonable ogre here because I won't budge about how I drive a baby around in my own car? Why is it WRONG that I won't transport her baby daughter in any way other than properly buckled into a properly installed car seat? I just quietly, calmly, politely insist. (It's not like I'm pitching a hissy fit. Although, I can feel that cauldron of disgust beginning to boil. A fit may well be imminent.) Why am I the heinous bitch for being inconvenient and not just "letting it go"? No, no, no, no, NO. *bangs head on desk*

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  49. Hey all, thanks for praying! The suspect has been apprehended and the lockdown is lifted! Thanks so much!!! Love you all! :)

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  50. YAY!!!!!!!!!! Praise God!!!!!!!!!!

    (Although, so very, very sorry for the loved ones of the man who was killed.)

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  51. Yes, the lockdown has been lifted. The shooter was caught and arrested in Louisville (about an hour and a half from campus).

    My last class of the day has been cancelled and we are all ok! Thank you all :D

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  52. So glad for you Holly and Kelly. Take it easy this afternoon.

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  53. Oh, thank god!!! So glad you girls are safe and sound. Definitely sending thoughts to the family of the man who was killed.

    Rigel, deep breath. Don't get BP-ed up. You are absolutely right. Stand firm (without the heart traumas!). This is a non-negotiable stance.

    Molly, thanks for the thoughts!

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  54. So glad you're ok Kelly

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  55. Thank you Deb for sharing this struggle and journey with all of us. I really can’t explain what a blessing it is to have found this blog. You touch my heart and give me courage with your words; you both do as well as all those who comment. I hope you both have an idea of what a gift you have given by making this such an open place to rant and rave and sometimes cry for not just yourselves but all who read it.
    To see and feel that there are so many others struggling with issues at least a bit similar to my own really does make them a little easier. I don’t often see others around me facing the same issues, most of my friends and the people I know have parents who are still quite young and are not yet dealing with these things.
    My parents being young (early 60’s) means that the decisions we make today may very well end up affecting them for the next 20 years or more so that adds another layer of difficulty to all of this. Once you add in my brother and his disabilities it can almost be enough to make your head explode.
    You also just made me realize something that I can’t believe I’ve missed. The mention of how you and your Dad sat together at your Moms bedside hashing things out made me think of how frustrating it has been with my parents in opposite ends of the city.
    What I need to do is take my Dad to my Mom. How the hell did I miss this? I have their accessible van sitting in my driveway. I just face palmed. I’ve been so focused on getting our mutual households into some semblance of organization and figuring out the logistics to get through the next few months that it went right over my head. Wow, just wow. I can’t believe this hasn’t occurred to me.
    I think I got stuck on the whole you can’t just leave a hospital idea and mixed it up with my Dad being in a nursing home that he can’t leave when in fact he can. This just made my day I’m going to take him tonight.
    One last thing, I’ve enjoyed reading all the comments today and wish you all the very best and a hug to whoever could use one. Rigel I’ve done many a car seat rant in my life so I agree 100%.

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  56. Erin, yes! I mean, I'm not in the situation right now, but I could feel myself falling into that trap of trying to take everything on myself and forgetting there are ways to bring more people into the conversation. So I totally relate! Thrilled that it will actually change your day.

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  57. Deb, your parents are blessed to have such an extraordinary daughter to be their advocate at their side. Emotionally, yes but most importantly physically and vocally.

    Pierre's Mom is slipping into dementia and all of the kids are far away and are trying to advocate on her behalf via phone calls and emails with doctors, social workers, long term health care professionals, etc. The list is endless. And difficult to navigate when you're not there in person to demand an answer that will make sense and offer the best and loving solution.

    Be their warrior daughter and don't forget to take care of yourself. xo

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  58. Gae warned me. Not a dry eye in the house, she said. So I waited until my deadline was met to come read. Deb, what a story of triumph and perspective. I think you are handling this beautifully. Your parents are lucky to have you and so are all of us, because I can only hope when I get there, I can keep the important things in mind. Hugs to you.

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  59. Deb, your post is totally heart wrenching. I am a few steps ahead of you and have gone many routes to figure out the best and easiest transition. There is a wonderful organization in Toronto called Living Assistance that works with you in the home which might be most beneficial to you all right now. Please feel to call or email me anytime if you just need to talk or find out another perspective. We also toured many retirement homes in the city, and did you know that you can try them out for a few days, a few weeks or a month to get a feel for the way of life there. My mother settled in one and spent six years there.

    Barb, it is so wonderful that Deb has such a good friend like you to lean on and share the pain, experiences and triumphs. It does sound lie there will be many.

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  60. They are fighters Lyndsie thanks. Holly that is a good plan to go home and give your parents a hug. Love it. I know Denny, the "wish you knew them" part is the heart breaker for me. Kelly I am so glad you are safe and he was caught. My heart bleeds for the families of the dead and injured.

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  61. Oh Madge I'm sorry. That is a whole other world of this isn't it? I am not an only child. My brother does what he can but it is mostly up to Colin and myself. Your Mom is so lucky to have you and your sister making lovely decisions for her, just as she did when you were babies. Good for you Madge!

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  62. Sarah thank you and I wish strength for you and for your Dad and Grandma. And you touched on guilt. The only thing I would say about that is that I have tried to remove all guilt from the scenario. I say, am I doing the best I can? and if it's yes, I have no guilt. Good luck. Rigel a rant worth ranting about. How can someone not do every single thing to keep their child safe when so much of their safety is out of our control. Grrrrrrrrrrrrrrr

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  63. Thank you Gae xo
    Rigel Clip girl to the rescue. Sweet distraction for these gals Rigel. And they are safe which is the sweetest thing of all. Dawn thanks for the lovely comments. I have had my own issues with Mom over the year believe me. You have nothing to be ashamed about that you cannot deal with your Mom right now. The part of the blog that I left out was despite my deep love and devotion to them, I want to conk their noggins together on a semi hourly basis. So yeah. Love is one thing, personalities another. I'm sure I piss them off too.

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  64. Molly I am so glad you guys are okay I cannot express it enough. I am sending you chocolate wishes. After what you've been through, I would add chips, dip and wine. Erin thank you. It looks like both you and I had an epiphany. Molly in all honesty, it seems like you have much more on your plate than I do. I will wish you the best and hope you can stay focused and sane during all of these life trials. Tannis thanks, I am so sad for Pierre and his Mom and that you guys are so far away. That must be so painful for all of you. I will try to be warrior daughter but as you say, the list is endless. sigh.

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  65. Hart I will do you one better. I hope that you never get there. There are lots of people who get old and keep their health and die in the sleep on a snowflake evening after a delicious dinner. That's what everyone deserves isn't it? Thanks Mary-Jo, I will certainly add them to my list. I have to narrow it down now so I will contact them too. And thanks I may just take you up on your kind offer.

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  66. Deb, hate to say this, but you forgot some members of your team. Your husband & the boy, who love you dearly and would do anything for you, even the things they can't, such as take your pain onto themselves. Your partner, Barbara and her spouse...ditto. And all your other friends, both near and far. Even your readers.

    THEY say that women tend to take too much onto themselves and end up feeling overwhelmed and angry. That's where those other members of the team come in.

    Wouldn't surprise me if you were flooded with offers of support, encouragement and help in the coming weeks.

    If someone invites you over for dinner, take them up on the offer, feel no guilt about it and reciprocate when you can. And so forth...

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  67. BIG HUG, Deb.I know exactly what you are going through with your mom. I believe that part of our tears are for the loss of our childhood. When the parents are healthy we can mentally remain "children". All of a sudden we exchange roles with them, whether we want to or not. You are so very lucky to have a support team, AND, best of all, your parents are able to be members of the team. When my mom suddenly became ill after a lifetime of great health, I was mostly alone and had no support team. Fortunately my mom and I talked openly and extensively about what to do if she were to become unable to drive or take care of herself. That was a relief, of sorts. I strongly urge everyone to have that discussion with their parents as well as their spouse. The surprise of sudden illness is bad enough. Don't wait until you are in the middle of the crisis. The effects of a decision made under that kind of stress lasts a lifetime.
    I'm so sorry you have to go through this, Deb, but I have no doubt that love and humor will see you all through.
    The biggest of hugs,
    Karen

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  68. I won.

    Like it wasn't a foregone conclusion that I was going to win. Duh.

    Never underestimate my stubbornness.

    And, I kept it all inside and was pleasant and smiling and nice. But, firm. Uncomprimisingly firm. Deb and Barbara, I should be an actor like y'all! My jaw hurts from clenching my teeth and being nice but firm. (When I really wanted to scream.)

    How does your baby get to be 4 months old, and you still don't know how to click the carrier into the base and then release it from the base?

    If the straps are too tight, adjust them. Don't just stop buckling the baby in.

    I have a headache. A tension headache. At the base of my skull and spreading down into my neck and shoulders.

    I finally just slid into a mode of dealing with the woman like she was a sleepy toddler with an earache. I took on that tolerant, "you can't help being a pain in the butt" patient voice and just breathed my way through the afternoon.

    But, I won. And, I didn't destroy any friendships in the process. It was a strain. Really. It was hard being that nice when I was that disgusted and frustrated.

    But, now that I'm back home more than 3 hours later when I was only supposed to be gone a little under an hour -- I had to call and make urgent arrangements to have someone go pick up my son from school. *grrrr* And, I'm looking around the room for something I can kick without negative consequences.

    Screw it! I just picked up my kid from the house of the friend who got him from school for me. We're gonna have a Mommy-Eddie date to Taco Bell and then go wander the video game shop for Christmas hints! Let the fun begin!

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  69. And, Deb, my beloved George who died this summer had his massive heart attack right after he'd finished a big milkshake -- his favorite treat. One of his grandson's made a point of telling me that so I could take comfort in it.

    Deb, I often think, "If I were the level of filthy rich that I could be frivolous and indulge in whimsy without financial consequence, I'd do xyz for Deb right this second." Like, I'd overnight you a loot box of candles and fancy embroidered cloth napkins or arrange to suddenly have gorgeous flowers delivered to you or order something silly like a box set of Mr. Peabody and Sherman DVD's and have them be an overnight order to just appear to you tomorrow. Just to put a bright, light drop of warmth into your day of struggles. I have this sort of whim multiple times a day each time I pray for your parents.

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  70. Deb, I know what you are going through. I went through a similar situation when I was 17 with my grandmother. She had a massive stroke and it was up to my mother and I to make all of the important decisions, no one else wanted to step up so we had to. I was still in school, trying to figure out how to pay for college and what to study there while also worrying about my grandmother's health. Three years later, she is living with my mother and I while I attend university and my mother and I work. We are her caregivers everyday, but we have 2 ladies that take turns during the week caring for her when we are not at home (in class or working).These ladies are great and are able to make her laugh, which is a blessing. I truly wish you the best. My heart and prayers are with you and your parents and family!

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  71. Hugs, Deb! By all means, lean on the people around you. If you all lean together you can prop each other up!

    The part about knowing them as a person - the dancer, the proud chef - really hit me. I have just returned from my uncle's funeral. He was battling cancer for the last few years of his life, and they left him a shell of a person.

    At the service, they showed pictures of his life. There were some things I remember and some I have only heard about - the baby mischief maker, the star athlete, the doting uncle playing trucks with his nephews.

    He was also a part-time historian who could bring to life the stories of long-dead relatives. They weren't just a skeleton in a grave, they were a person and they had a life, a purpose. I think that was one of the most painful things about this - the torch has been passed to the next generation, and it is up to us to tell those stories about *him* and make sure he is not forgotten.

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  72. I agree with Meredith. The boy, Colin, us...we are all here for you. <3

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  73. Reread this entire post for a second time, Deb. Missed some of the details the first time, especially the part with you and the conversation you had with the O.T. "I wish you knew them."

    I promise that when I start practicing I will make it an effort to get to know the PERSON by who they are and not just by the disease or condition they are living with.

    Now I'm crying...great. I miss my family and I want to go home. I have my second MRI tomorrow...so many unknowns. My faith in Christ gets me through these times. I pray that you, Colin, Luke and your dad find strength in comfort in each other as you go through this transition.

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  74. Big love to all of you!!! Man, you are precious. Gem precious. xoxoxo

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  75. Meridith thank you. I know that I have that team, believe me! I thank them all every single day. It is wonderful to have an outpouring of support. Karen you are so right. Communicate with your family while you can, and while they can. it is so important to understand what they want in every respect. Rigel it was a fight well fought. Good for you. Rigel I feel all these gifts from you every day. Cannot wait for calendar to kick in. To both anonymous posts, I can see that you have both had more than a taste of this aspect of life and you both have a handle on it and your feelings. At 17 one of you knew real loss and stepped up to deal with it and those around you.
    And with the other uncle's funeral you learned who he was and as a result who you were and where you came from. Thanks to both anonymousesessss.
    And thanks Holly.

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  76. (((((HUGS)))) to Deb-
    Hon these are the times that try ones soul. The truth is *big breath* NO body gets outta this game alive but as a culture we totally suc at learning to deal with the gradual decline into oblivion. An RN researcher once told me "We're not gonna be happy till every one lives 4ever in perfect health." But Debra we (as caregivers) DO know our patients are SO much more:


    What do you see, what do you see?
    Are you thinking, when you look at me-
    A crabbit old woman, not very wise,
    Uncertain of habit, with far-away eyes,
    Who dribbles her food and makes no reply
    When you say in a loud voice,
    I do wish you'd try.
    Who seems not to notice the things that you do
    And forever is loosing a stocking or shoe.
    Who, unresisting or not; lets you do as you will
    With bathing and feeding the long day is fill.
    Is that what you're thinking,
    Is that what you see?
    Then open your eyes,
    nurse, you're looking at me.
    I'll tell you who I am as I sit here so still!
    As I rise at your bidding, as I eat at your will.
    I'm a small child of 10 with a father and mother,
    Brothers and sisters, who loved one another-
    A young girl of 16 with wings on her feet,
    Dreaming that soon now a lover she'll meet,
    A bride soon at 20- my heart gives a leap,
    Remembering the vows that I promised to keep.
    At 25 now I have young of my own
    Who need me to build a secure happy home;
    A woman of 30, my young now grow fast,
    Bound to each other with ties that should last;
    At 40, my young sons have grown and are gone,
    But my man's beside me to see I don't mourn;
    At 50 once more babies play around my knee,
    Again we know children, my loved one and me.
    Dark days are upon me, my mate is dead,
    I look at the future, I shudder with dread,
    For my young are all rearing young of their own.
    And I think of the years and the love that I've known;
    I'm an old woman now and nature is cruel-
    Tis her jest to make old age look like a fool.
    The body is crumbled, grace and vigor depart,
    There is now a stone where I once had a heart,
    But inside this old carcass, a young girl still dwells,
    And now and again my battered heart swells,
    I remember the joy, I remember the pain,
    And I'm loving and living life over again.
    I think of the years all too few- gone too fast.
    And accept the stark fact that nothing can last-
    So open your eyes, nurse, open and see,
    Not a crabbit old woman, look closer-
    See Me.

    They taught us that in 1st year Nsg school and mmost of the time it is not forgotten>

    Best hopes for the future for ALL the McGraths & Mochrie clans!

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  77. Deb, your parents sound like people who know how to make the best of whatever life hands them. As much as people dig in their heels when it becomes necessary to move into a nursing home, sometimes once they're there they really enjoy it. Their lives improve in many ways they weren't expecting. They like being helped by people who are trained for that purpose, and they also like the social aspect of all the new friends and the communal activities that are put on, and the ease of getting together with other people. You might be pleasantly surprised. I hope so. Love the pic of you and your mom. And the pic of them when they were a young couple.

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  78. Stubblejumpin' Gal (Kate)November 21, 2011 at 11:51 PM

    And the folks with Luke! What a sweetie he is!

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  79. Thanks, Deb. Yeah, I had to step up when I was 17 to help care for my grandmother after her stroke, but honestly, I think that I am a better and stronger person because of this experience. I think that I have grown a lot over the last 3 years.
    I know that we should love whole-heartedly and without restraint. We should value each and every day. We should laugh when we can and cry when we need to. We should help those that need it and ask for help even when we don't want to. We should enjoy life, and the people in it, as much as we can while we are here. I know it has been said before, but life is short...live it to the fullest and pass on the love and joy to those that maybe cannot experience to the fullest anymore. Give hugs, give laughs, give love.
    All the best to everyone who is dealing with, has dealt with, and who may deal with anything like this!
    -S

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  80. Thank you so much for this. I think it is just around the corner for many of us. Talking and sharing the decision with your parents is really the best way to go about it I think. At least they feel they are part of the decision making process and have a say in what happens to them. Any decision made out of love and caring will be a good decision.

    My dad has told me that what he misses most about getting older is working and being useful (he was a finance guy). I told him that in many senior organizations, they have committees and groups and that they need someone to do the accounting and books. His face just lit up! ''I can do that'', he said!

    Thanks again for this wonderful blog!

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  81. Sharon what a wonderful poem. Thanks for sending that. I hope I did not imply that they were not being treated with all the respect in the world, because they are. And I am so glad you reminded me that some caregivers do see this. I know they do. I see them enjoying her. I guess it's that I know that the didn't get a chance to really see them as they were, you know?

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  82. Kate you are so right about Mom and Dad. They will always make a silk purse out of a sow's ear. I know that they would have a great life wherever they go and we will be there for that transition and that life after. But we are still hoping so much that they can stay in the home that they love, with care. That would be perfect. But, come what may. Thanks so much Kate. S, wow, you have been through it. And you are right, we become better people for it, don't we? Thanks for your kind comments. Thanks Josee, and I love that you are helping find real solutions for your Dad. Love that his face lit up!

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  83. Deb--I read this with some recognition, having gone through a similar process with my husband and his dad who we were all quite close to, a few years ago. it sounds like you are doing--and being--the very best daughter and person that you can possibly be, which is no doubt a great comfort to your parents, and will be a comfort to you later, even if you don't feel that way now. this is a powerfully moving account of what it means to be vulnerable, and human, and what love really means. I'm sending you hugs........Barbara--I'm sending you hugs too-you're a beautiful person & friend ... xo Lori

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  84. Thank you Lori. It sounds like you have been there. It's a part of life isn't it? We must deal with it and prepare for when we are there ourselves, as best we can.

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  85. Hey lovely ladies!! (especially Deb because this relates to her hilarious husband)

    The Richmond Register (local paper) wrote a fantastic article about the show this past Friday, and I thought I would take the liberty in sharing it! :D Enjoy!

    http://richmondregister.com/viewpoints/x229372120/-Whose-Line-guys-improv-geniuses

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  86. Hi Deb, it's Sharon Rogers again. What a wonderful and extremely touching note about your parents. I actually remember your mom from Bridlewood days. I can relate at so many levels, though. It's so hard to see our parents getting older and even harder to finally come to grips with the fact that they aren't as fearless and capable as they once were. My dad passed away at 79 (in '98) from pancreatic cancer - 2 short months following his diagnosis. Mom just turned 93 and has been battling dementia since her mid 80s, but at least she remembers us all - it's the short term memory that is shot. Anyway, I'd love to still connect with you. I'm in FB under S. Brown (in Mississauga), or email sbwaterlilly@hotmail. I'm so proud of you and all your accomplishments, and have been following your career off and on over the years. You're such an inspiration!

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  87. Hi Deb ~ I've been wondering how your Mom has been doing, if she was released from hospital and how your Dad was coping. Then I started reading your blog ~ with each expressed feeling and exposed thought my eyes filled with tears. I've been down the road you are travelling with my parents and I've fallen down that crazy rabbit hole too. I can relate to it all. You are so fortunate to be blessed with parents who despite the challenges they are facing, they are considerate of your role in their lives. For three years I watched my parents health decline and desperately tried to get them the help they needed so that they could continue to live independently. It was an extremely stressful time because in my heart I wanted to respect their wishes but as their primary caregiver I knew it wasn't in their best interest. Their ability to reason wasn't there. In my case the saying "Once a parent, twice a child" applied. Finally Dad was hospitalized, his level of care was beyond my mother's capabilities, my parents refused to consider assisted living and so, it was no longer their choice to make. The doctor deemed it was necessary to place Dad in a long term care facility. My mother relunctantly agreed to join him. I thought "at least they would be together" and hoped it would bring them some happiness. Unfortunately my Dad never recovered and he passed last year. My Mom is currently residing in a long term care facility. She is filled with resentment and reminds me of it every time I see her. Thank you so much for sharing this part of your life. I wish you all the best life has to offer. Hugs from an old MAC friend, Sandy Bennett-Sayer

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