ANA Discussion Forum
Caregivers => Caregivers => Topic started by: OMG16 on June 12, 2008, 12:55:19 pm
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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
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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
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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
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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
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"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
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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
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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!* :-* :-* :-* :-* :-* :-*
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Phyl -
I think I speak for everyone here when I say you help us cope, too!
Kisses :-*
Jan
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Phyl -
I think I speak for everyone here when I say you help us cope, too!
Kisses :-*
Jan
back atcha, hun! :-*
Phyl
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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.
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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
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Good point, Sheryl.
IMO humor is instrumental for coping - at least for me ;)
Jan
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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
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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
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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 8)
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Sheryl
Kidding and good humor and some one to listen is always good medicine.
Thank you Mary for understanding. Your mother , son and grandchildren sounds like they are in good hands. It always feels good to have some one who cares.
eve
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Great new category - I've been caregiver for my disabled daughter for the past 10 years. She functions at about a 2 year old level. BALANCE is the key - instead of worrying about the things she can't do (like talk), it is much more productive to work on what she CAN DO. We also keep our family - both immediate and extended - doing things together as much as possible. We adapt as necessary (Anna rides in a special needs trailer behind our bikes), and we extend our world to her as much as we can on her level. To her credit, she is an easy-going, happy child, and we can pretty much go anywhere as long as she's not hungry or tired, and we bring her book bag along. We do festivals, long car vacations, church, restaurants, pretty much everywhere, with few exceptions. Both of Anna's brothers, while evil to each other on occasion, both adore their sister, so that helps, too.
I have also been interim caregiver to both of my parents this past winter and spring, and find again, that integration of family and activities really promotes the best mental health for everyone.
Tam
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I find it hard to consider myself a caregiver -- my husband has been able to go back to work full time since his an was removed in March of 2006. And he is able to do most things he did before, but at a much slower pace. It is probably ME who is having the most difficult time. There was a post in March about personality changes that I replied to. THAT is where we - me are struggling. Little did we know when his surgery was done, how our lives would change. I often wish I could talk to his doctors in private -- why weren't we told what would/could happen?? I did not find this site until well after the surgery when I was trying to put a handle on why he was the way he was. He went into surgery one person and came out someone else. Is it because the tumor was large and pressing on his brainstem? Is it because he was in surgery for over 8 hours? Do all an surgery patients have symtoms similar to stroke patients? And why is the weakness in his body on the same side as the tumor? Will his balance ever come back? Does the lack of feeling in the face come back? See what I mean? So many questions, no answers.
All I want is my husband back. I am sometimes so sad. His mother told me a few times it could've been worse. HOW?! She doesn't live with him or see him every day. The doctor's told us up to a year's recovery. OK, I can live with that. But NOBODY told us about what can possibly happen regarding personality. It is like sometimes he doesn't understand what I am saying - just looks at me with a blank look.
There, I have dumped. Maybe that is what I need to do. I don't really talk to anybody about how I feel. If anything, I have probably shut people out. Nobody likes to talk about the elephant in the room and I get tired of saying "he's fine" when they ask about him. We have a new "normal" at our house now. WHAT else am I supposed to say?? It is so hard to see him now -- and remembering how he was before the surgery. It is like it aged him 30 years.
My husband would say sometimes in the first months after the surgery, if I expressed frustration -- "trade places with me". Well, guess what? I WISH I COULD!! He could probably deal with me better than I am dealing with him.
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I often wish I could talk to his doctors in private -- why weren't we told what would/could happen??
Sherry -
why can't you do this? I know there are HIPPA laws and such, but my mother talks to my father's doctors on the phone all the time. My father doesn't have an AN, but he's had other health issues - 5 way bypass, hips replaced, etc. - and no, he's not senile. He just doesn't always remember to ask vital questions, or often is uncomfortable asking them, so my mother usually has direct contact with his docs. The docs seem to have no problem with this, and it's certainly helped out both my parents.
Maybe you could call or make an appointment with your husband's doctors and tell them of your concerns. Afterall, you are his wife and - although I hate to assume things - that should give you some "privileges"; at least IMO.
Jan
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Hi Sherry,
First I am sending you a big hug. I feel so sad for you. This has to be so hard for you!!!!
It occurred to me when reading your message that many people who go through major surgery of many types have side effects of depression. Could this be causing his personality changes?
Jan, great point! Even if the doctor didn't give direct feedback (which I would hope he would), it gives HIM important information he can follow up on. I think guys don't often tell doctors all the symptoms. If you go in with him, I think you could say something like "he doesn't seem to be himself since his surgery".
My thoughts are with you. Hang in there, we are cheering you on!
Another big hug,
Mary
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Hi Sherry
I'm not a Doctor or anything. I was the wife of someone that also had a large AN with similar outcomes. First of all do contact your husband's doctor and share with him or her your observations and concerns.This can often be done by phone. Right now the Doctor only has part of the picture, your input would help to give him/her a clearer picture and could lead to referrals to Doctors that may be able to help. With large tumors it is possible to have multiple residual neurological deficits and symptoms as a result of complications of acoustic neuroma with or without hydrocephalus. These may include complaints of neurocognitive impairments, changes in personality. mood disorder, tumor side extremity paresis. tumor side limb ataxia, tumor side sensory impairment and ataxic gait along with the dysfunction of the cranial nerves ranging from 5th, 7th, 8th, 9th 10th and 12th
Sherry, for me it was like the man i married and knew for 25 years died, this "new person" I still deeply loved, but the person I had married was gone. The physical body remained, but the specialness that made Chet, Chet was gone. It was made worse because i felt like no one understood. I was constantly told 'how lucky I was' and how "it could of been alot worse". I knew both of these statements were true, but i wanted my husband back. Sherry, as much as we both had to be grateful for, there were also losses and those loses must be acknowledge and grieved for. I wasted alot of time trying to get back to where we were before the surgery, that i fail to see the possibilities. It took me awhile to realize that, that life was gone. All of those feelings that you are having, from the joy of his still being here, to the anger, frustration, the hurt from mood/personality disorder, every one of your feelings are Ok. You have a right to feel the way you do.
What I know to be true (and why you need to talk to his doctor) you are his safe person. It is you who he feels the safest with, which also means it is you who sees the person that no one else sees. It is you he'll trust enough to see the full range of emotions, you will see him at his worst. If there is personality/mood disorder it can be extremely confusing (and hurtful) since things can be normal one minute and angry the next. Adds whole new meaning to "turning on a dime" The truth is with so many outcomes it's very possible that a emotional dependency developes adding to the caregivers plate.
All of us have positive and negative traits. With brain injury some of these traits are reved up a few notches. As an example, if a person tended to be alittle on the selfish side, or maybe argumentive prior to surgery, say 3 on a scale of 10, thru the years we just probably said or thought "get over it", but with brain injury the same traits may be now at a 7 out of 10, very noticeable to you, but because he has always been this way, he is unable to see how he is now.
It is part of the brain injury, no matter what the cause.
Balance does improve, it's something that has to worked at, but does get better. This does not mean that the ataxic gait and or tumor side upper and lower extremity paresis. tumor side limb ataxia will improve. Again I'm not a doctor. But I can share what Sherry is describing is probably
alot like Chet was. If either Chet or Sherry's husband passed you on the street, no one would think brain tumor, most everyone would ask " when did he have the stroke". With the facial paralysis and tumor side limb impairment, this is what the world sees, a person that has had a stroke.
Sherry, i never did have all of the answers, tho i tried hard to get them, I did reach a point that the answers no longer mattered, know that the doctors won't have all of the answers. Start with evaluations. A good neurologist can help sort thru the impairments and help find the cause. They can outline the impairments. Testing such as an EMG (gee it's been awhile, hope those are the right intials) can help you determine where your husbands facial paralysis is at and help you chart a course of possible treatment in the future. a neuropsychological evaluation will help to better quantify neurocognitive impairments. An eye specialist to help keep watch on possible problems resulting from the facial paralsis. No one doctor will have all of the answers, but each doctor that you see will give you part of the answers. Kinda like a puzzle, you may not have all of the pieces, but you'll have enough pieces to be able to see the picture. Once you have the picture then plotting out the way will be easier.
Sherry, having walked in your shoes I have got give you a hug, and to tell you that i am so proud of you. I know that this isn't easy and that there are easy outs that could be taken, but you stayed. Next time Rascal Flatts "Everyday" song comes on , listen to the words. That's you he's singing about.
Geez, I know that this won't make sense and i do apologize, but it'll make sense to Sherry, or at least I hope it does. Sherry, please email thru this site anytime.
Hugs and prayers
Raydean
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Raydean - I posted on this thread earlier but as soon as I read your post and Sherry's, I shivered and my eyes filled up when I realized that is what my husband and I are going through. Yes, we try humor and "understanding" but I doubt things will be the same as "BT" - before tumor. In fact, I have started seeing the psychotherapist that my husband had been going to - a wonderful, caring, knowledgeable man - and he said, "after what we've been through, your lives won't be the same". We are still working through how to deal with the "new life". My husband constantly says he would rather have had a hip or knee replacement, heart surgery, or other procedure than to have his head cut open and then have this "benign" (meningioma) growth reappear 2-1/2 years later for an encore performance. He refuses a second surgery and is dealing with the effects of swelling after Cyberknife and horrible reaction to Decadron which did not seem to help. Every day is focused on our health issues - mainly his - and it is constant.
Sheryl
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Sherry~
Your post struck a chord with me - not because I have to deal with someone who has changed, but because I have always felt like I changed! Many times I have told people that I am NOT the girl my hubby married - and that really bothers me. I think that the big saving grace for us, unlike y'all, was that we had only been married for a year and so we were still adjusting to each other. I can't even imagine what it would have been like if we had spent most of our lives together and then the big whammy! Even though it was hard because I was so young and that we had NOT been married for long, I guess that is yet another thing for me to count as a blessing. On the flip side, I am pretty outgoing and on the go all the time so I might have driven my more low-key hubby insane if I had continued at the pace I went before AN surgery!! LOL!! Incidentally, I did have the "stroke" symptoms and I have asked the same questions about why the same side is affected but received no real answers. I was in surgery for 14 hours...I really don't think that has EVERYTHING to do with it (I think Pooter had a LONG surgery and doesn't have all the effects I did) - it is the same ole answer - no two AN's are the same...
You will be in my prayers...if you ever want to chat, please PM me.
K
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K,
I've said to my girlfriend Pauline that I am not the same person I was two years ago. I get feeling so down at times and it bugs the daylights out of me because I was the life of the party. My husband has a harder time coping than I do. He's had to learn to just let me go. When I have really bad headaches I'm in bed. When I'm better I'm back with him. It really put a strain on our relationship, but we are working through it. Louie doesn't like to see me hurting. He feels helpless and he works in health care.
Our social life has come to a stand still. I can never commit to going out or entertaining because I never know how I'm going to feel. I'm tired all the time. It was worse when I was working. I went from work to bed, from bed to work. I never really saw my family or friends. My one girlfriend Susie told me at Christmas that the sparkle has gone out of my eyes. I was very mischievous. My 17 yr old son is so much like me. I would laugh for no reason, just to laugh. I think that was one of the things Louie loved most about me. Slowly I'm working on finding myself again.
I could cook for 10-12 people at the drop of a dime, now I'm lucky if I cook dinner for the 6 of us 4 out of 7 nights. My house was spotless, now.....yikes.....its all hands on deck. I crack the whip. Everyone has to help, I cannot do it all even though I'm at home. Yes my family has suffered along with me. I am so grateful to have my family and friends. Some days the old Anne Marie peeks through and I enjoy her as much as I can and hope she will stay around for longer periods of time.
My husband, sons and a few very special friends have helped me cope. This forum has had a hand in my ability to cope also. Thank you!
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Anne Marie and Kay your posts really struck home for me. I have said to my husband, "I want me back". I am the neighborhood party planner. I am known for my smile, silliness and social nature. I was an enthusiastic analyzer and a fine artist - portraits. I don't feel like I am any of those things anymore but I feel an affinity for it all so I am hoping I will find my way back. Worst part I feel like I get easily agitated. My husband is laid back and energetic at the same time. This has helped and I know he has to miss the me I was. Luckily, because he is laid back, he is taking things in stride better than I am and his energy level is helping him to cope with added responsibilities. I have felt different since before I was diagnosed, even. I am fighting the hardest to be me again. I am not far off but there are some things, like being a professional artist, I am sure I won't do again. Others seem to think I am handling all of this well, so I think that is a sign that the real me is still there, it just is going to take time. Some of the negative symptoms I assume can be contributed to the fact I lost one of the best friends of my life to cancer a couple weeks after I was diagnosed. I know that made coping with things more difficult.
Sherry, I am thinking about you everyday. I am sending you hugs. I can only imagine how hard this is for you. I am cheering you on.
Take care,
Mary 8)
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Sheryl
Thank you for your kind reply It was so easy to see myself in both your's and Sherry's posts. It's really hard for most people to understand the "road less traveled" Heck, sometimes we don't understand it and we live(d) it!!. Part of the problem is the medical community in general doesn't have the answers that we seek. As spouses/caregivers we hold onto the hope of "if we knew the cause" then "maybe there's a treatment". It's hard balancing the reality of the situation, with the hope of things to come. Harder yet is accepting that the best answer you may get is "just is".
As rare as this tumor is, it's much rarer to find yourself or love one in that 1% of outcomes. It's not just the physical outcomes (which may be many), but also the quality of life issues, relationships, every aspect of the ANer and spouses life is touched. It can be overwhelming and so easy to get lost in the bigness of it all. There are no books, no road maps to direct us in the right direction. So few are these outcomes that it really becomes isolating. It took alot of inner strength and courage for both Sherry and Sheryl to post. If the answers that we seek aren't found within the medical community, how can we expect others to understand? I think that most of the 1% are reluctant to post and share and are very aware that of the content of what we post, often leaving out the really serious stuff because of fear it might cause others, especially the newly diagnosed. Just being able to connect with someone that is walking in your shoes is very meaningful.
The support and understanding that Sheryl and Sherry receives will greatly touch their hearts. Each post is like a candle, lighting the darkness.
If I can be of any help please PM me anytime.
Hugs
Raydean
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Hi, i'm new here. i'm 21 years old and my mom had acoustic neuroma surgery approx 7 months ago. As her son, i decided to drop university and work to be at home with her Its been a really difficult time as all of us have had new adjustments and challenges to deal with. She's always been so full of life and fire but since her surgery these few months have been a huge change in personality, mood and ability. I am sure it is unbelievably difficult for her to have her life change so drastically so soon and as her main caretaker it is difficult to encourage her and keep pushing her to take steps towards her recovery.
I guess i am wondering if other caretakers or family members noticed any personality changes or mood changes post-operative of the surgery? I feel bad to get frustrated sometimes with this "new" person i see and encounter everyday, but sometimes you can't help but miss who she was.
i would appreciate any other experiences or advice from other people in the similar situation
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HI All-
First, to all who shared - thank you. This gives us all somethign to think about. In my case, I started to wonder - in what ways have I changed? I am less certain now in some situations and that feels very strange to me. I've always been pretty confident and outgoing; now, I am challenged by going to the grocery store alone. :P I'm on hyper-alert when I am driving now - wlhich probably is a good thing in the long run. I get tired and I have to lay down more often.
But (and this is big) I am still me under these new experiences and feelings. I am lucky (like you, Mary) that my husband Willie is my rock. He has always been the slow steady one while I have tended to run off in many directions. We laugh that now I am finally walking at his speed - slow! We go to bed earlier now because I get tired, but we make sure we spend that extra time well. I know that it has been hard for him to see me go through the ups and downs and not really be able to fix it - but in many ways, this unwelcome experience has drawn us even closer. I try to be sensitive to how scary this is for him, too. I share my fears with him, because I think it helps both of us to put it on the table.
I have a philosphy for living that has really been put to the test this year - I beleive that, while you can't change the things that happen to you, you can control how you respond to them. I sure didn't want to get this acoustic neuroma right now (or ever) and it has definitely made changes in my life and my business. How I choose to respond to that, however, is totally within my control. I occasionally let myself indulge in a little bit of self-pity; but usually my choice is to focus on the things I can do, rather than the things I can't do. I hope this makes sense? I still have so many things to be thankful for and I am more aware of those blessing than ever now.
For those who have loved ones who are struggling, try not to lose patience or get scared yourself. Hold their hand, give them extra hugs, be understanding when they get tired or withdraw for a time. And, definitely, talk!
And, yes, talk to their doctors. One of the things my husband and I did quite some time ago was sign the necessary forms with all of our doctors that allows our doctors to talk to us about each other's medical conditions. This is extremely important because they cannot talk to a spouse without this due to the HPPA laws. We are also in the process of doing this with my inlaws so that we can understand help with their health care.
I wish you all moments of serenity.
Debbi
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I have a philosphy for living that has really been put to the test this year - I beleive that, while you can't change the things that happen to you, you can control how you respond to them. I sure didn't want to get this acoustic neuroma right now (or ever) and it has definitely made changes in my life and my business. How I choose to respond to that, however, is totally within my control. I occasionally let myself indulge in a little bit of self-pity; but usually my choice is to focus on the things I can do, rather than the things I can't do. I hope this makes sense? I still have so many things to be thankful for and I am more aware of those blessing than ever now.
I wish you all moments of serenity.
Debbi
Well spoken Debbi. Here is a picture that I really like. It goes right along with your philosophy.
(http://img.skitch.com/20080417-p9ijbkb1sj2e14d5rrgdwtwjpt.png)
eff
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Hi all,
I LOVE the sailboat analogy - so appropriate for the situation. I think that goes for caretakers, too. I have been a caretaker in one way or another the last 5 years. It is difficult. Now I am the "caretakee" and my husband is dealing with me, my 88 year old mom, 2 grandkids here for the summer, taking care of our dogs, his new business, the house, cars, etc.
While I am gradually doing more and more then somedays I am not up to snuff and backslide. We communicate to get through this. He is the one person I can really open up to (besides this site) - so he is the reason most people are amazed with my attitude. He let's me vent and then I feel better. I try to be aware of how hard this all is for him. I try to encourage him to do things for himself. He needs some time for himself, too. I have been trying to do this as caretaker, also. You need a break just for you. Also,I am staying in touch here . This site has really helped me.
Debbi, you will never know how much of an inspiration you in particular have been for me. I thank you immensely!
Hang in there all.
Mary