How does everyone cope?

[OMG16]

First let me say who was the Professor Smarty Pants that thought of this idea.  Great thinking!

I think this will be a helpful catagory for all of us who either due to brain tumors have become a caregiver or due to aging have become the same.

So how does everyone cope with the stress of caring for an ailing spouse, disabled child or of course aging parents.  I myself enlist the help of Family members and also friends to give myself and my husband a break.  We also try to take a few trips alone.  During the first year we were to busy helping him recover, doing rehab full time, working full time and of course daily living stuff that we didn't have a spare moment to think about it.  We were in the moment only.  About a year later when we started to have a little time to think about things is when I fell apart and was hysterical for about a day.  Of course this was when my son was not home and was with a Family member.  I decided then to take it one day at a time and sometimes just 1 minute at a time.  I could not change what had happened I could only change how I reacted to it.  These things do build character.  I remember once about that time my Mother came over to talk to me about things and of course let me know what I was doing wrong.  I told her to stop because you can always tell before they say a word where the conversation is going.  Well she of course continued and I ended up throwing here out of the house.  I feel badly about that to this day.  Anyways what I'm trying to say is there is no right or wrong way to figure out what is best for your Family.  Try to not make some of my mistakes like holding things in forever.  Seek a support group and a counselor who can help you put things into perspective.  It will get better with time.

So now do I get a prize for the very 1st post.    16

[er]

 OMG16
I understand & hope things do get better.
I was only in your shoes for a while. I had had my surgery on March 2005. So for about a week my mother in law came over to help besides my husband . I am of Spanish decent so I tend to cater to my family and friends. I was not use to some one taking care of me.
On June 21 2005 my son tried to commit suicide on his 21 birthday over a girl , he was already stressed out over his mother. It was hard for him to come and see me in the hospital.
On Sept. 2 2006 my husband had a 6 way by pass. He had had a heart attack and I begged him to go to the hospital. I drove him there after 3 days they sent him out of town an hour away to another hospitals our hospital aren’t equipped for his or my kind of surgery. Because of  all this I had so much problem with my mother in-law that my husband finally told her off .  So we haven’t seen her since. I depend on a lot of prayer. I have a lot of faith. If it wasn’t for my God I don’t think I could cope.
eve

[Jim Scott]

I'm not 'officially' a caregiver but my wife has suffered with myriad problems for the past 15 years, including Fibromyalgia, Crohn's Disease, serious, painful spinal difficulties and other, lesser problems, including airborne allergies.  She's had numerous surgeries (including a spinal fusion).  She is quite active and independent and doesn't require constant care, but I perform most of the housework and do whatever 'heavy lifting' is required around our residence.  My wife has always retained a very positive attitude throughout and we support each other.  She was an absolute 'rock' during my pre-diagnosis doctor/lab appointments.  She was my staunch advocate and supported me 100% while I was hospitalized and later, as I recovered.  She admitted it was a little weird for her to be doing the supporting but she certainly did it well. 

We not only share a long-term marriage (38 years in August) but a deep and very real spiritual faith.  That, and our mutual love is probably what has sustained us through many storms in life, including our physical challenges.  We're still here, thriving and trying to help others as best we can.  I suspect that many caregivers share a similar background of love mixed with faith and of course, a deep desire to help another person in whatever way we can, especially a loved one. 

I trust that this forum will be beneficial to those who are caring for those who may be ill or in recovery.  I'm sure some salient advice will be offered and many wonderful stories will be posted, along with cries for help and cries of frustration.  Unfortunately, times of distress can bring out the worst (as well as the best) in people and I know that relatives can be more of a hindrance than a help in some situations.  I'm sure that unpleasant aspect of caregiving will be amply covered, in time, as it has to be.  Meanwhile, although I didn't come up with the concept of this forum, I welcome it's creation and look forward to checking into it on a regular basis, not because I have to (as a moderator) but because I'll want to. 

Jim

[Betsy]

Hugs to you Eve & 16, and bless you both.

I don't often admit this, but one of the major reasons I chose radiation over surgery for my AN was the fact that I live alone, was new in town, and I don't have much family to help.  Plus, my Dad fought 35-year battle with MS, with Mom taking care of him as his health deteriorated.  He passed away 5 years ago this November.  Surgery would have been harder on her than on me and she's been through so much already.

I'm already a part-time caregiver for Mom on weekends. She's in terrific shape, but needs help keeping up the house and planning meals.  She'll need more help as she ages, and I want to be there for her like she was for Dad.  So I stick with the vestibular therapy and pray that my balance will be better by then.

To answer your question on the title of this post "How does everyone cope?", the answer for me is an 80 mile separation from my family.  Close enough to get home on the weekend, but far enough away to maintain my own space.  Everyone needs their own space, I think.

This is an excellent addition to the forum and I'm looking forward to reading future posts.  Please commend Professor Smarty Pants for coming up with the idea!

Betsy

[sgerrard]

"Professor Smarty Pants" would be the director of ANA, along with the board. They have also added a Caregiver section to the main web site, including a list of resources:

http://www.anausa.org/caregiver_info.html
http://www.anausa.org/caregiver_resources.html

By the look of it, they have already identified some useful links. I think it is a great addition to the forum and to the ANA web site.

Hats off to all of the caregivers out there.

Steve

[leapyrtwins]

Thanks for the info, Steve.

As 16 said, this is a wonderful addition to both the forum and the website in general.  Obviously some very smart people running the ANA 

Betsy -

good point that patients need a lot of caregiver support after AN surgery.  Initially I was heading towards radiation because I didn't feel I could "burden" others during my recovery.  Burdening included not only my parents, siblings, and children, but also included my boss and my staff at work.  Thankfully they all came to my "rescue" and told me that I could take the time I needed and that they would all be there for me.  At that point, I was able to confidently and comfortably choose surgery.  I am thankful that I had this support and sorry that you didn't.  But, it sounds like you made the right treatment choice for you.

Jan

[ppearl214]

me had nothin' to do with this one.... this time   Glad it finally arrived... been waiting on it to be done!

How do I cope, with all I endure? With genuine, unconditional love of family and friends... and having faith in the "woman upstairs"... and through extreme mental strength (for those of you that know me well... you know I have enough to spread the wealth).  I allow myself to have my emotions run free on the not-so-good days as I (and you all) are certainly entitled to them..... but I try to surround myself with positive energy and folks. (where's arushi? Nothing like a little white light to help the day).

... and last, but not least.... you all.  You've seen me publically acknowledge it here and in the ANA March newsletter.... how do I cope?  YOU ALL!      

Phyl

*runs over to 16 and puts multiple forehead kisses on her forehead!*            

[leapyrtwins]

Phyl -

I think I speak for everyone here when I say you help us cope, too! 

Kisses 

Jan

[ppearl214]

Phyl -

I think I speak for everyone here when I say you help us cope, too! 

Kisses 

Jan

back atcha, hun! 
Phyl

[er]

 Jim,Steve,Phyl, and a whole bunch of others have the gift to make every one feel good inside so we can cope. Thank you all.

[Sheryl]

WOW - great thread.  So easy to see that I'm not the only one with a myriad of medical/family problems.  You sometimes think "why me" and then read some of these stories and wish you could reach out and help.

My benign schwannoma was found incidentally in November of 2001.  I have been on wait and watch for the past 6-1/2 years with hardly any change or symptoms.  After this , in February of 2004, I had breast cancer surgery, underwent chemotherapy, and radiation - right now, 4-1/2 years later - I am cancer free.  Three months after my cancer surgery, while undergoing chemotherapy and loss of hair, nausea, etc., my husband was diagnosed with a benign meningioma.  His surgery was May of 2004, and he went to my last chemo session just as bald as I was - who was the patient here???  He needed PT, OT, and speech therapy while I needed 33 sessions of radiation to my breast.  I also found out shortly thereafter that both of my parents in their 80's were diagnosed with the beginning of Alzheimer's. 

How do I cope - lots of drugs!!  No, only kidding but both hubby and I have used humor, lots of reminiscing,  and with almost 41 years of marriage (in August) under our belts, we have helped each other through many ordeals.  My brother and his wife who are physicians have been right there for us - no matter when or why we call.  Our son has been able to "hold our hands" when needed.  And, I can't end this note without thanking the people on this board and the Cyberknife board - so caring and concerned and giving of their time to help.
Sheryl

[leapyrtwins]

Good point, Sheryl.

IMO humor is instrumental for coping - at least for me 

Jan

[f706]

I dropped by the other day to report on my 1-year post status.  In the ensuing comments, Betsy let me know of this new section.  My bride of 35 years been my responsibility for total car for the last 10-12 years.  Each year she gets a bit weaker and more fragile.  Lupus disabled her completely.  When I was diagnosed and was told by the first dr. that surgery was my only viable option I lost it.  All my kids were out of state doing their own things.  My parents were dead, my wife's parents were dead and she was an only child.  I have one brother that lives in town, but he is 67 and lives about 12 miles from us.  I just cope one day at a time.  Last september I needed to take my wife to one doctor or another 22 times.  She doesn't drive, can't remember when anything happened and often forgets what she needs to remember.  Once upon a time she was an absolutely brilliant woman.  A marathoner.  A scientist.  Now we can watch the same TV show a few weeks later and she will not remember having seen it.  In the last two years she has fainted and fallen causing a total of 16 breaks in one foot and a broken ankle on the other leg.  I've tried to get our church group to have someone here daily while I'm at work, but that hasn't worked.  Besides, she will go for months without incident and then "wham".  No warning.  I guess the thing that has helped most is the way my job is I'm basically able to use my home as my center of operation.  My company has set me up with telecommuting and so for the first few hours of every work day I'm to be on the computer--in my home.  Then it is respond to requests for the rest of the day.  Much of that can be done via email or internet.  So, I don't have to be away in an office somewhere else for 9-10 hours.  That helps her and relieves some of my worry.  But how do I cope?  Not well.  I've a hobby that really seems to help me, but I'm not able to spend much time with it because when I'm not working my wife wants me to be with her.  Meaning sit in front of the tv.  When she tires of that she goes to bed or reads.  My shop is in the basement and away from the TV.  I've not touched my latest project for about two weeks now because she has been more alert and expects me to be "with" her while home.  So while being bored at watching the same TV show for the 2nd or 3rd time I pick up my personal computer and log on.  That offends her because "ive got my nose buried in the computer" and am not following the show with her...  So, I don't cope well.  I went to a therapist for a few months last winter and that was kind of a bust.  So, I've resigned myself that this is my life.  That makes it easier if I'm not expecting an improvement in her or someone to spell me.  She is in that in between stage when she is not ill enough to need constant care, but too ill to care for herself completely.  I'm grateful that she is not ill enough to need 24 hour care, because that would mean she was on her way out and I love her and don't want to lose her.  We do have some good times.  We've been to LA and Baltimore so far this year and have had a few weekend trips to get out of the bad weather.  These are difficult too, but it is a change and a change is as good as a rest they say.

Well, enough grousing,

Dan

[chelsmom]

Congrat OMG16 for being the first to post here!!!!!!

I agree with you.  It's a tough road and all you can do is take it one step at a time.  We all develop our own coping skills along the way.  I too was totally consumed with the day to day caring of our daughter that is needed for the best possible recovery.  At just past the one year mark, when we though we were on the other side of all this, she was put back in the hospital for a week with post radiation swelling that was causing her to have several problems.  She has a shunt (her fourth one) and they were concerned with the swelling that was occuring in relation to the shunt setting etc.  It seemed like things were never going to get better but here we are almost 2 years from her first surgery and she is doing great.
I, like you, finally caught my breath after about 15 months and then it really hit me.  Just the other day I was driving past the 'Redlands Bowl' where they hold the high school graduation ceremony. All the 2008 grads with their family and friends were swarming around to get in to the Bowl and it brought back a flood of memories.  I actually had to pull over as the tears were streaming down my face and I was overcome with emotions.  Chelsea had been diagnosed 5 days before graduating and the following day we were going to meet her neurosurgeon at UCLA.  The day after that she was admitted and our life was forever changed.

I have to say though that I was glad to be able to keep all my feelings at bay as I know that if I had tried to deal with them at the time I might not have made it through this whole ordeal.  My husband and I were both on the same page with this way of thinking and every minute of the process we kept a stiff upper lip, tried to always be positive, and looked towards the future. Most importantly, we were with her 24/7 during her 3 months in the hospital and for the 6 weeks of daily radiation treatments that followed.  This allowed us to learn how to help her with all her needs and I actually think it made it less stressful on us as we knew at all time exactly what was going on. 

I think this is going to be a great place to post for a lot of us.
 
Michelle

[MaryBKAriz]

A wonderful birdie gave me a head's up to this thread. What a great idea!!! I am amazed so many are dealing with so much and my heart goes out to you!

Some time I hope my "Rock", Weldon will access this. He has been the best of the best caregiver to me! I appreciate this and know it is not an easy task to be the one giving the care, love, and emotional support. My hat is off to caregivers! 

I have often been a caregiver, too. From that perspective, I have to say, it has helped me immensely to put things in perspective. It has made me appreciate even the little joys of life and not sweat the small. I am thankful I have had my life because I realize there is so much worse that can happen than having an AN. I have had a mild systemic lupus since our daughter was born 30 years ago. Healthy days I appreciate!

My 87 year old Mom who has lived with us the last year and a half has many, many health issues, but she is an amazing role model! Her spirit is spunky - all 4'8" of her!

Our now 37 year old son moved back in with us 5 years ago. He is a wonderful, sweet man who suffers from bipolar disorder. I really understand the pain Eve has endured. He has been suicidal many times. His wife, who married him knowing of his bipolar (they dated 4 years) - wouldn't help him and didn't want him to get help. TOOOO sad. He adored her. So, I drove to Texas to take him out of the hospital after an almost successful attempt on his life. His wife soon filed for divorce. Because he now lives here, his kids come here every summer. We care or them while he is at work. Last year I had the honor of tutoring both of them. I love those kids sooooo much! Anyway, I am so proud of him, and his progress, he fights every day to make the world a better place. He has come so far that last year he moved back into his own apartment and has a job helping others learn to cope with mental illness and return to be a functioning citizen. If he isn't an inspiration to me, no one is!

So those are the highlights of "caregiving" from both sides of that word from my perspective.

Celebrating life,

Mary