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My family has suddenly turned invisible

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

After reading many of the posts on these discussion boards, I now realize the kaleidoscope of emotions and events happening around my husband's cancer diagnosis are not so weird and unusual. Well, I could only wish that our family would take the time to investigate and understand this phenomenon because they seem to have all suddenly gone invisible. Some due to the denial and inability to cope with their own feelings and emotions and some due to the inability (or refusal) to understand that I have changed during this process. My priorities have undergone a major overhaul because I am caring for my beloved partner full time and watching him battle the pain and side effects of chemotherapy every day.

My priorities no longer include being a hostess to anybody who visits our home, they no longer include discussions about family drama and gossip and they certainly do not include time for anyone who is without kindness and compassion for our situation. Yes, there are members of the family who have said I "look stressed out" and it is probably very scary for them to see me that way. Therefore they have suddenly become invisible. For some, I am sure there is a fear of doing and saying the wrong thing. What once was a close-knit family has scattered like dust in the face of hardship. Do you call that a "fair-weather family"?

While I grasp the comprehension that they cannot and never will completely understand our plight there also seems to be a reluctance to try. There seems to be a lot of safety in denial. Then you don't have to deal with your feelings nor do you have to inconvenience yourself with lending a helping hand. We get more kindness and compassion from strangers and oncology nurses than our own family.

May God Bless them along their journey of life and may they be able to maintain their own important path of goals/achievements and may cancer never touch their lives wherein they might also have to mine the treasures and depths of their souls.

Cancer takes away some of the parts of life we once labeled important but cancer also gives us a perspective of love and caring that can only be obtained if you are willing to look.

Treasuring our time together,

AnnaLeigh

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

Oh I hear you, and I can certainly relate somewhat. It think sometimes people don't know what to say. As far as being a hostess, I won't do it, I just dont' have the time. How about calling and saying something like "how would you 2 like to go to dinner". Now that is considerate and helpful. I remember telling one of my sisters about my husband's cancer and she said, "Well, I hope he feels better". You have got to be kidding me. I tell you my husband has Stage IV cancer and that's all you got to say. I told her he was having major surgery and she did say do you want me to come down to which I responded yes. (She lives 3 1/2 hours away, but does not work so time was not an issue). Guess what, she never showed up. I never called again, and I do not send her e-mail updates, I just don't have time for stupid. If she does call, of course I will talk to her, water under the bridge but I would cut my hand off before I will pick up the phone and call her. Fortunately for us, friends, business associates and many family member have been super supportive. For the ones who have not, get over it, I just don't have the time for you. Take care - Tina

kyle mitchell
Posts: 3
Joined: Dec 2009

my family has more or less rejected me to in about every way. Ive been thru 2 stage 4s and a stemcell tran. the only way i could make peace in my mind was christ and being able to forgive them. cause we have to be able to for give to be for given good luck with your search and god bless you and your husband. take care Kyle

Caregiver1963's picture
Caregiver1963
Posts: 46
Joined: Jan 2010

Anna,
I am a 45 year old caregiver for my husband who has brain cancer. I have been so discouraged that none of his capable family members have offered to help in anyway. I work full time, take him to all of his appts, am the only one to be with him when he has been in the hospital, manage the health care insurance piece, disability documentation piece, the day to day responsibilities of owning a home etc- the same challenges we all have as caregivers. His family's idea of helping is coming to visit at our home which up until this point has meant that I am the hostess and wait on everyone. I have even suggested gently to them that overnight house guests are hard right and the response I have gotten is that it is up to my husband to decide whether or not they come to stay at our home. I have decided that no matter how upset they or my husband will get at me for " not looking after the family" when they come to visit- I am going to start using their visit times as the opportunity for me to get away to have time for myself. His family members are more than capable of looking after my husband in my absence.If I don't do this I don't get any time for myself so although my husband is really angry that I plan to do this I feel like I need to try to push away the guilt I feel as result and just do it. As I told my priorities are him, myself and my job.
His family is also in denial and has been for almost a year now. They ask me and my husband questions about his current condition and we are frank with them about his condition- but they seem like they never want to hear it- they are most interested in talking about their problems and needs. I have suggested in the past that they come to medical appointments which has fallen on deaf ears.
Going forward I know it is best to focus on what I have control over and try not to
spend energy on what I don't.
One day at a time...
Mary

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

Anna,

You are certainly not alone. I appreciate and understand totally where you are and the clarity of the responses you have gotten imply the rest of our community understands as well.

When my husband and I moved to our new loft in NYC in 2003, it was my dearest hope to entertain people constantly. I had never had the room before and therefor the inclination was never there. Just the desire. I was able to do that for a few years, but in 2005, Steve was diagnosed with small cell lung cancer. He had two surgeries then and was later diagnosed with superficial bladder cancer. That involved chemo. In October, his lung cancer recurred and we have been going nonstop since then.

Pre-surgical visits. Surgery. Hospital stay. Post surgical visit (pre and post required trips to Boston from NYC). Chemo, pre and post visits - every time we have chemo. Eight hour chemo session and weeks of recovery.

Prior to Steve's recurrence, his 90+ year old mother lived with us for 20 months suffering with non-Hodkins lymphoma. She was treated with six months of chemo - went into remission and before she could get settled back at her place in Brooklyn, had a recurrence and then another six months of chemo. She stayed with us and we were as gracious as could be. She had her own room. She had a companion so that Steve and I could both have lives - but that wasn't possible. She couldn't be left alone and we never had enough time to really do anytthing.

Family? Steve's brother lives in Houston. In two years he managed to visit for three days twice. When Steve was operated on in Boston, he did fly in for that. But...it's easy to live 2000 miles away from the people that you don't want to deal with.

So...when people come to visit us, I no longer rise to be the ultimate hostess. "Anyone thirsty?"...now gets a reply of "there's soda and beer in the fridge. Glasses are over the sink and ice in the ice maker." I don't get up.

I am on call as you are. The only one. I don't know what family you have that has left you in your stormy weather. I do have some friends I am waiting to call on. Right now, I deal with the same things you do - only Steve won't relinquish the bill paying to me. He is still able to do that and I am quite happy to let him.

His mother thinks he will get better - like what he has is a cold. His brother had Hodgkins and has been in remission for 26 years. Steve, my husband, is 68. I am 61. We sit around not knowing what's coming next. I am ready to do whatever I have to do. Steve is the impatient one. "When will I feel better?" Not an unreasonable question. If not to feel better, then why go through all this?

I'm not bitter. There is a singer, Susan Werner, who has a wonderfully poignant song calling our attention to the fact that these are probably the best days of our lives. No matter what we have been given, we are the better for it. Yes...love and caring are there in abundance.

Just remember, which I have a feeling you do, that we have to take care of ourselves as well as eachother. Eachother meaning our spouses or significant others as well as our fellow caregivers.

I wish you well, and hope you remain strong and loving.

Adrienne

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

Thank you for your compassionate replies and wishes. Sadly, the desertion of friends and family during a time of crisis is all too common in our culture.

This process has finally brought me to a point of having sympathy for those who only want to share the good times and then run like heck when anything meaningful is required from them. Sympathy, because while they will not have to endure the deep and profound sadness, they also will not receive and enjoy the bonding, sharing and never ending abundance of love that can exist when you truly know another human's soul and spirit. Caring for a loved one while they endure the hardest times of their life is immeasurably difficult and an extraordinary honor.

The greatest sign of strength and personal character is to bestow an act of kindness and tenderness.

Thank you all for your kindness,

AnnaLeigh

SamsWife
Posts: 51
Joined: Sep 2007

Good morning,

AnnaLeigh, you say the most beautiful things! I'm sorry for the lack of support you've received. We've been blessed with very good friends who are so supportive and they are mostly my husbands guy friends who were also his coworkers. The women bring food from time to time and we go out to lunch occasionally but they are really lacking in just letting me talk and them truly listening. I had an opportunity to go to lunch with a couple of friends last week and I left feeling quite empty - I think they were just so uncomfortable hearing about what is going on in my home right now - the caregiving - the nearing the end of life issues, etc. - the down and dirty (changing ileostomy bag, etc.). Also, my husbands family is really non-existent - his mother comes up from time to time and tries to be helpful - she has lots of health issues herself - but his siblings have been invisible - that's been surprising to me - we don't even receive phone calls from them. I'm just relating to your experience - in some ways - I really do have some people who are super super supportive and it really makes a huge difference. I know I will be more helpful to others in the future. When this is over for me, I'm going to volunteer on the oncology unit at the hospital and I'm truly hoping that people will feel that they can just open up to me and talk - whatever they need to say - I'm hoping to be able to be at least emotionally helpful to others.

Take care - god bless!

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

I also intend to volunteer at the cancer center where my husband is being treated. As caregivers, we have learned the true definition of listening and are not afraid of the "down and dirty details". Nor, are we afraid of emotions like tears and grief, therefore I feel we must have something very special to offer in the way of companionship to others on this path. My husband and I have seen numerous other patients in the chemo room who spend many long hours in treatment without family members or friends there to support them. Sometimes the hunger in their eyes for human contact breaks my heart - so I plan to do what I can to support and give back to the organization that has been our lifeline.

Oncology nurses are a very special type of people also. While they must maintain a certain amount of professionalism and distance in order to do their job, they still offer very encouraging words, supportive suggestions and genuine concern. All while working in one of the most difficult fields of medicine. Nurses really understand the concept that the needs of the caregiver are just as important as the needs of the patient.

Sadly, it is true - when hard times or disaster strikes - you find out what people are made of and you find out which ones have the courage to share the bad times as well as the good.

For those of us who are willing to face both good times and bad - the dark days are extremely dark and the bright days are joyously bright.

May your days be joyous and bright.

Bizybeejm
Posts: 4
Joined: Feb 2010

I recently lost my mom to breast cancer. While I put my life on hold and traveled 45 mins everday to be with her and help her and my dad, I had family that did'nt seem to care. Once hospice care started I knew we did not have long. One of my sister's could seem to come around and she was 15 minutes away. What I took from my experience is this........
Some folks are in denile that's the way they deal, some are just selfish and don't want to be bothered. People that have not dealt with cancer sometimes don't understand or realize that there is no cure and it does not just go away, the cancer patient won't "feel better" and while we can send people to live on the space station and get email from them up there our people here on earth are getting, dealing with and dying of cancer everyday and one day it might be one of those with their head stuck in the sand.

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hello,

I've experienced the same kind of rejection. Only one of my friends stayed by my side throughout my fight with NH lymphoma. I have many relatives that live only minutes away, but no one has reached out to help. The majority of my friends bailed as soon as I mentioned being tested for cancer. My co-workers never called once they found out about the cancer. It was a time of rejection that really hurt back then. It's been two years and I am still fighting by myself. I drive myself to and from all treatments, clean and prepare my meals. I am now in remission for 14 months and am doing great. If it were not for the Lord on my side. I would have been a lost puppy!

The good thing about these rejection is I now know who should and shouldn't be in my life. As long as I have the Lord, I can make it. We all can. We all are going to win the fight.

Take care and continue to be strong.

Folks24
Posts: 96
Joined: Feb 2007

I think there is a saying that you choose your friends and you are stuck with your family.

I used to tell my dad that I was surprised he was related to anyone on his side of the family because 90% of them were selfish, rude, and just wanting as human beings. My mother used to tell me I really got their goats as they couldn't find anything bad to say against me. Reality bites and it is amazing how many people out there that won't deal with it.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I read these comments and it always stuns me how similar our stories are in so many ways and this issue of almost abandonment is unfortunately one of those simliar stories for far too many.

I don't understand it at all frankly. My two kids seldom call and even though they live in other parts of the country you would think they would wonder if their Mom is okay now and again. Oh I hear from them but not terribly often. I think back to when I was there age in their 20ties and know that I didn't call home as much as I should but then I didn't have ill parents either, I really thought I brought them up better than that. It's disappointing and hurtful no doubt about it.

The rest of my family is the same and of course much older, aunts, uncles, my brother, people who I thought were friends all drifted away. The only thing I can think of is that they just didn't know what else to say so nothing was easier than trying to think up something, anything. Ya maybe it reminds them of their own mortality, dealing with someone who had cancer, but they just don't see anything but the word cancer I don't think. No idea of how to deal with it all I guess so they don't.

This is truly something I wasn't prepared for after the diagnosis that's for sure. You certainly do learn a great deal about alot of things after the diagnosis and human nature is certainly one of them.

I think the best thing we can do is open up and talk about it on sites like this, chat about it where the topic is understood completely - by other survivors who have experienced the same things. At least we realize then that we are not alone and this happens to many others as well. Little comfort I suppose in some ways but validation is very important in our wellness, or at least that's my take on it.

All the best. Bluerose

Annouche
Posts: 2
Joined: Feb 2010

Dearest,

Family happens! Friends are made. I have neither. It is difficult to deal with losses and trials and tribulations...Misery, contrairy to popular belief, does not love company.I hope you feel better. I wish there was a way that I could contact you and offer some help. Annouche.

zack1
Posts: 11
Joined: Mar 2010

My name is Diana. My husband Doug was Diagnoised in Nov. 2009 with liver failure and Liver cancer. They have given him 3-6months to live. They put him on Nexavar, I guess to try to prolong his life. I can relate to this blog because our family and friends at first were all around and offering to help but now we get the occasional phone call and no one comes by our home. It gets very scary at times. All I can do is pray daily and try to get through each day. My husband is the grandest guy in the world and I love him so much. If I could take his cancer for him I would. He is so close to God and I am so thankful that God is with us every min. of everyday. My husband is still trying to work only because he wants to. We don't know what is around the corner but I do know we have asked for a healing and standing on the promises our Lord has given to us. Cancer is so cruel but Our Faith comes from the Lord and he will see all of us through whatever we have to face. Thanks for letting me share.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Anna,

I have commented before on this blog you bagan but I was just re-reading your comments and something popped out at me that didn't before. It's just a feeling here and there in the way you speak of what you have learned about people not being as near as they once were to you in this, not as supportive, and I detected little vibes of anger in your statements - even though the words were themselves were understanding and well written.

I am just wondering if you have recognized that maybe under it all you actually still have anger and hurt in how you have been left on your own by family and friends? I could be totally wrong about this it's just that several times as I re-read your postings here this kept coming up for me.

The reason I bring this up is that I really believe in grief counselling when it comes to dealing with cancer - especially for the caregivers involved. It is such a complex situation in dealing with caring for someone we love with this dreadful affliction and I know personally how helpful a good grief counsellor can be in helping you out of an area of grief that one can get stuck in and I wonder if under it all you are stuck in anger.

Again I might be totally wrong, it's just that i seemed to detect that over and over, reading almost between your lines. Have you considered a grief counsellor or have you been to one?

Many blessings to you and yours. Bluerose

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

Bluerose,

You are perceptive as well as compassionate and I am sure you are a valued friend to all who know you. Yes, there was a huge amount of anger when I originally wrote this post and have since been seeing a great therapist to unravel all of these feelings. Anger is part of the caregiver process as well as part of the process for the cancer patient.

When I first heard the concept that what I was experiencing included grief, it took some serious thinking to understand how grief could play a part in this when my husband is still alive and going through treatment. The grief I was feeling was for the loss of the future I thought we had built together and also for the realization that I was going to lose my friend, companion, lover and mate for life (my husband has been diagnosed as not curable). The entire life we had built was coming down around us like an earthquake had shattered us to our very core.

After much soul searching, I now know that cancer has affected everyone in our family and they will all react differently to the situation. Some will grieve now and some will not grieve until a future time when they are ready. Denial is a tool and protection to assist those who are not ready to face the reality of his diagnosis.

So, I stand at my husband's side, ready to share what ever comes our way and my priority is to let him know how much he is loved each and every day that we are together.

Thank you for sharing your insights on this board. The more we share, the more we let others know they have a safe place to come and not feel alone, embarrassed, or ashamed of the human emotions that grab us when we face cancer and the new reality it brings.

Blessings always,

AnnaLeigh

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the reply to my posting. I am happy to hear that you sought the counselling you needed when you needed it and hope that you continue to touch base with that counsellor should you feel the need in the future.

As you said we go through so many stages as caregivers or survivors and sometimes we run into other issues along the way where a little help goes a long way.

Take care of you and yours. Blessings, Bluerose

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Cancer, the Ultimate Test of Friendship

Being diagnosed with cancer
Separates our friends from pretenders
Cancer provides a litmus test
for those who we can trust
Because our quest is to survive
and do all that we can to thrive
No cancer patient should be left to ask why

Why a brother is now elusive as a butterfly
Or why a spouse has now misplaced their loyalty
You slowly see a difference in your friends
and while you try to justify their actions
its not something you can honestly defend
Sometimes it feels as if you’re just a distraction

When we return to our work environment
Our colleagues seem to have misplaced their sentiment
We spend many days reflecting on what we did wrong
But we do not find anything that suggests we do not belong

As we look for a kinder and more gentler world
We remember the songs that we grew up with
You remember those favorite places with those greener pastures
And the acorns that attracted nature’s playful squirrels

Some of us turn to reading and writing
Others discover the little things in life
We try and find a common bond
With others that we have come to be very fond

We walked many of the same rugged rock formations
And know in our hearts
that each of us had our moment of quiet celebrations
as our lives have taken a new path with a new start

We are hurt that those of us that we thought we could count upon
Gradually slipping away from us, eerily setting just below the sun
We have no answer when our friends appear in distant shadows
And find inside our soul an aching feeling which is ever so hollow

We have not changed nor do we intend to
We will always take the high ground as its our creed
and be there for others in need cause they are human too
Even for those who abandoned us in our time of greatest need

Heart of Soul Steve 2 time cancer survivor & Caregiver

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