Wow, the new normal people keep saying that to me. "You have to find the new normal" What the hell does it look like, feel like or smell like? Nothing that is happening right now is normal. It's doctors appointments, hospitals, alcohol wipes, drugs, and stress. I can't imagine that any of this is the "new normal" I wonder everyday what our "new" life will be like. Will he be able to return to his job? Pucker his lips to kiss me? (I know that seems weird, but as a wife you think about these things) Will we have to sell our house and car to stay afloat? Right now I feel depressed, trapped, lonely and scared. Everyone acts like happy little cheerleaders and I just can't get into that. Maybe it is just cause I am scared about everything.
Liz, you are an amazing woman. I can't imagine what you are going through, but you have helped so many of us with your wisdom and supportive words. I hope you will continue helping all of us in our journey.
God Bless
Valerie

Oh Liz,

You put into words what I feel, and deal with, everyday. You did it so much better than I can, but, I would like to share these thoughts.

Dennis was diagnosed 5 years ago. Yes, rad and chemo were horrific. Nobody should ever have to endure that nightmare. But, we made it through, as I hope you all do.

I prayed.....put him through rehab, and thought, maybe, just maybe, we had come through to the other side.

We found that "new normal". Actually, a better relationship was formed than we'd ever had before......once the dust settled. But, it was never the same.

Yes, he went back to work, I..........got up, cleaned house, raised our boys (something told me not to go back to work........intuition? dread? I don't know) and ultimately waited for the other shoe to drop.

Then it did.

Now, we have to look for a whole new "normal". Friends mean well, but they don't have a friggin' clue!!!!!!!!!!

NOTHING is normal about not being able to hear your loved one's voice, or feel his kiss.

Crushing meds, taking care of the household, coordinating every aspect of your family's needs, those are widely expected, and verge on normal....making sure your husband doesn't drown in the shower.......That's NOT normal!

Valerie, I actually had "well-wishers" tell me that I was lucky that he could pucker his lips......Yeah, that is true on the most basic level, but they don't realize how you will never feel his tongue again.

Never hear his voice on your answering machine. Hell, not even his yell when you inevidably fight. No sense of smell, no matter how beautiful, or nasty (one good thing when you have a litterbox.


Not feel his breath in the crook of your neck while you sleep, his snore, his cough, the sigh in your ear, the feel on your breasts,.......you get the full picture.

We have shared, and valued, a full sex life in the 20 years we've been together. Now....there is nowhere on his body for me to love on that I don't have to worry about infection, dressings, blocking his airway, kinking a tube. He is equally awkward........how do you pleasure your wife without using many of the things she has come to adore.

Nobody has a clue where this leaves the caregiver unless they've been here.

And, I hate to say it, but would he have done the same for me? I want to think so, but there are times when the kids are fighting, the house is a wreck, the insurance is calling for information (which, by the way, they insist on talking to Dennis about, because they haven't gotten the power of attorney form yet, but don't have the intelligence to read his chart, and realize that he can't talk.....to realize "HELLO", he can't put it in writing either!!!!)

This world takes so much for granted. I know I did too, before this disease touched our world, but what can be done to educate others on the importance of cancer? And, just as important, how to teach the caregiver how to cope, without guilt, depression or a feeling of helplessness. How do you explain that this can turn your world into a place you don't recognize, let alone, learn to find a place in again?

I think about writing a book, but how could I?I'm afraid I'm too biased. I still haven't found that enlightened, spiritual, religious, ignorant, educated, outlook that would make it educational. Sad.

If anyone has any idea how I could do this, please contact me. It is something that I think could benefit the foundation, through sales, etc.

There needs to be an outlet for us. There has to be a way to "recover" from this cancer that will give us as much hope as the advancements in treatment have given the patients.

I'm so sorry that I've rambled. This is something that is very dear to my heart, and want all of you caregivers to know that I'm here to discuss at any time.

Love,
Mandi

Caregivers are the lonliest survivors. They act out of the purest love, and hope to be rewarded with their loved one's recovery, thanks, or maybe, just acknowledgement.

To the outside world, it is easy to

I remember my first new normal when Rob had finished his treatment,and seemed at last to be on the road to recovery.It consisted mainly of feeling left out and useless as he gradually took over all the things that he had needed me to do for him for the previous 4 months,and being made to feel as if the whole thing was my fault.His frustration and resentment at the slow progress he was making caused no end of confrontations,and the lack of day to day contact with the hospital was almost like a bereavment,and left me feeling very isolated.
His determination to put his illness behind him and get back to eating and work,and his despair at the way his body kept letting him down every time he thought he was making progress, turned him into a completely different person and my new norm then was living with a stranger i couldnt reach.Not working and no money coming in,asking for help from the state,fear for our future financially, all conspired to make him feel totally ineffectual as a husband and provider

The loss of the marriage part of life is a new norm that no one who is used to that close personal contact,wants to accept,but it affects both the patient and the carer and while i longed to be held close and loved he wept for the loss of his perceived masculinity and avoided any situations that would emphasise how much he was no longer in control of so many different things in his life.

And our last new norm together was his time in the hospice,and was the best of all the new norms we adjusted to.

Now my new norm has to do with loss and regret and lonliness and realisation and the worst part of the whole thing is knowing i would gladly live with all the other new normals if he was just here for me to speak to and touch.

Life will never be normal again and as has been said before the new normal sucks big time.

Oh Liz - your words really hit home for me, especially when you say "I would gladly live with all the other new normals if he was just here for me to speak to and touch". It is what keeps me going and helps me to appreciate more than ever the moments I have with my son and I see the smile in his eyes and we share a hug. It helps me to keep the dark thoughts, the "what ifs" at bay. Your words and thoughts and raw feelings that you have shared have helped so many of us. I hope you can feel the love that we have for you and that it will help in some way to soothe the heartache.

It has been very helpful to me, since the beginning days of last March, to make a little list each week of the things I am most thankful for. And in every room of my house there are favorite pictures of John - with me, kids and grandkids, on vacation, during holidays, playing music, riding in his Model A, building something or fixing something. Every day I have wonderful memories of him and our life together- cut short by this damned disease, but you know what- John's Dad died at age 48 of a heart attack [a few months after coming home from WW2] and my Dad had a totaly debilitating stroke at age 54. I am so grateful for the time we had together- much more good than bad and I [hopefully] still have some good things to share with my children and grandchildren. "Normal" can be redefined by any change in our lives. If anyone had told me 5 years ago that I would have a 16 yr old grandson living in my house, I would have said "No way"- but guess what ? :rolleyes: And about 3\4 of the time, I'm liking it! If someone had told me 4 yrs. ago that I would lose the sight in one eye because I wasn't tending to my bloodpressure, I would have said "No way". It happened. Remember the good stuff, look forward to new good stuff and take care. Amy in the Ozarks

Amy has just crystallized what I was thinking about 'the new normal'.
I could never have imagined giving birth and bringing up twins on my own, having a house repossessed, knowing my second husband was an abuser, surviving the death of my mother, caring for a disabled father--and now facing only a short time left.

But we DO all adjust and life does go on, it just doesn't seem like it will at the time!

My diary/journal has been ny salvation for many, many years--when ther'e been no-one else I could talk to, I can just ramble regardless!

Everyone on here is so strong and you are already all living 'a new normal'--whether still in treatment, facing recurrence, bereaved, coping with caregiving, dealing with other financial/emotional issues which may or may not be cancer-related.

Life is certainly 'a big picture' and one which can be looked at from a huge variety of angles and something new is found at each fresh viewing.

Hang in Liz, think of all the 'new normals' you've already coped with and how you've come through them--and I'm sure I'm echoing the thoughts of many when I say your 'new normal' includes the help and support which you--and Amy--continue to give to the rest of us out here.

Love Brenda x

Oh Brenda,
Bless your heart. I have the most respect for you. You've been through so much. I can relate to much, but not nearly all, that you've shared.
Please know that my thoughts are with you.
Love,
Mandi