Caregivers what did you do?

alexinlv

Help!! As my husband's only caregiver, (no family here), holding it together for my children and teaching 27 kindergartners all day I am stretched thin. This is only the 4th week into all of this and my anxiety level is through the roof. I would love to hear what other caregivers felt, experienced and did especially those first few weeks of diagnosis. My husband, tony, just put in for an extended leave, with no pay. I really feel like I need time off before I have a breakdown, but I can't do so, or I won't get paid either and I feel like I need to save my family medical leave, just in case, it's needed down the road. I have seen my therapist and have another appt next week. I haave a xanax prescription and do have the glass of wine at night, but that is becoming my crutch and I do not like that. (Well, I do like it, but I know it's not a good idea! lol!) I am getting the kids into therapy and I have a support group that is available a few times a month but just doing anything is so overwhelming. thank you. Sorry to vent !
Alex

tko683

What you are feeling is totally understandable...
I felt the same way. It is overwhelming and so much to do. We also do not have any family close so it is all us. I will say that it does get easier as you move along and have a treatment plan(My husband was dx in June 2011). So just know that things will get better. This board has been a great help to me just seeing all the stage 4 survivors helps me to encourage my husband. You are a step ahead of me as finding support groups for your kids. I need to do that. Can your husband get SS disability? I have heard that Stage 4 colorectal cancer is an automatic qualifier but I don't know that for sure. It sure would be nice if you could take some of your FMLA time now just so you can get organized and catch your breath. I'm so sorry that you are so stressed. Hope you are able to get some time off from work. Take care, hang in there, it will get better. Sending you prayers for strength to get through this time. Hugs, Teri

cynthiapi40

Anxiety sneaks up on you!
We have had such a an awful summer. My father in law past away on July 2nd. He was at work and fell to his death. He was the best father in law. Nothing but great memories. My husband and I was really having a time with that and still is. My husband has been such a rock. OMG, how does he do it.

Then my husband was dx with stage 4 colon caner on Aug 27th. He is still being the rock and said that we will keep it moving and he is going to do what he has to do. I on the other hand feel so much anxiety all the time. I was feeling it when my father in law past. So know it has gotten worse. I thought it was stress. My doctor gave me something to make me sleep and something for anxiety. It is good that you are speaking to someone. That is my next step. It is hard when a situation is out of your hands and it's not anything you can do about it.

I try to do things for myself. Like go to a movie, read or have a spa day. I know money can be an issue but we have to do things to get our minds elsewhere for a time.

My husband co workers was able to donate time to him. But I went online to see if he could get disability and from what I understand he can. You can apply online. I wanted to look at all of our options.

See if you can take a least a week from work, We took a weekend in the mountain after my husband was dx. It helped, then it was back to work for me.

I wish you well. We will get through some how, some way.

laurettas

That's a lot
You have a huge load, Alex, and I can understand why you are feeling stressed. I have no children in the home but try to help our daughter with her five as much as I can plus my parents live next to us so have them to think about as well. My husband was diagnosed in April and the first weeks were overwhelming. Life has leveled out now, however, and things are seeming more manageable so time does help. This is a huge blow and I think it just takes time to adjust to such a huge trauma coming into our lives.

It helps me to think of those who have more difficult things than we do and see that they are managing everything. Makes me hope that we can do the same with time and adjusting to our new world. I try to remember that the people are the important things that I need to focus my energy on and try not to worry about all the "work" that I have to do. The house, etc. are just going to have to wait until the trials slow down a little!

eibod

Hi Alex, my husband was dx
Hi Alex, my husband was dx in Nov 2009 as stg 4. (on our anniversary) Our children are grown and do not live at home, but in a way, that makes it more lonely. He sleeps a lot
when he is having bad days, I tend to worry more than. But then he snaps back and I think
everything will be ok. I have learned to take it day by day, and handle one thing at a time as it happens. Each treatment,surgery, procedure, hospital stay or whatever, I try
to deal with it at that time. He is currently in the hospital again, having had surgery
Oct 1st to correct bleeding, now they think they will have to do it over. I do not have a support group to attend, just the group on this site. Last week I was having chest pains and had to have a stress test, etc. Good news is my tests were good, I was advised to reduce the stress in my life. (ha,thought that was a good one) I do have to say that in the last two years we have still had good times in our lives, 2 new grandchildren born, a lot of family time with our children and grandchildren. We don't take things for granted now, we value the time that we have. You will find that you are stronger that you think, it is hard, but venting helps a lot. Take care, Brenda

emrose

Hi Alex, you are not alone
My husband was diagnosed in December of 08 and I got pregnant 1 month later. He was on chemotherapy through the majority of my pregnancy and I was an emotional wreck!! It's hard. No way around it. Honestly, I don't have a ton of advice but you just have to learn about what YOU need to be able to keep putting one foot in front of the other. For me, it was all about trying to have control - I did that by focusing on research, alternative treatments to help him feel better, stories of hope and survival, this board, etc. Of course, the upcoming arrival of our baby was a huge distraction for me too!!! 3 months after our son was born, his cancer returned in his lung. It was terrifying!! I am a fixer and I couldn't fix this. I am optimistic by nature, and there was really no silver lining. So, the very core of who I am was tested and I had to be realistic and, again, focus on what was in my control - that's what really helped keep me grounded. Not sure if this helps, I know we all process things very differently. I hope you find your way of processing, healing and supporting so that you can keep marching your way through this. Remember, it's easy to lose yourself when you are so busy taking care of someone else. But he needs you, and you need you. Don't forget to take care of yourself and get some me time in even if it's just in the shower!

(ps. Good news - my husband has been Ned since his lung surgery almost 18mo ago and our son just turned two! So, miracles happen every day!)

buckeye2

The good and bad news is
The good and bad news is that you will become accustomed to the new normal in your family. The hardest part of this disease for caregivers isn't the fear of losing the love of your life but finding a way to live somewhat normally with that fear. I would encourage to not leave your job. I am also an educator and going to work leaving my husband at home feeling like crap is difficult but it is also a place where I can go to forget for a little while each day. I have told my co-workers not to ask about our health so that I can focus on my job. I believe I owe it to my employers to make an effort not to let my personal life effect my professional one. I am not always successful but it is my goal. Don't use up all your sick days as there may be days ahead you will need them even more and you definitely need that health insurance. I had to encourage my husband to apply for disability soon after diagnosis because he would've rather held out hope he would return but I didn't want to risk a gap between end of FMLA and disability income. Even though I have days that I have not been the person I want to be, I believe that this job as caretaker is my greatest role I will serve in my lifetime. I want to be proud of how I handled it for my family. If you teach kindergarten, you are already accustomed to stress and only the toughest survive there. Just understand your role and move forward. I wish you the best finding the new normal so that joy is still in your life. Lisa. PS Keep drinking the wine though!!!

ddpekks

Hi Alex....
I can't add much because the above posters have about said it all. My DH was dx Dec, '10, chemo/rad & pacemaker replacement before surgery in June, '11, and now on (hopefully) final round with chemo.

I've kept my full time job and like someone has said, it's my escape. The people I work for are fantastic as far as time off and support. I only take necessary days off like initial consults w/all of his drs, hospital stays and days when he is extremely sick and can't take care of himself. Thank goodness there have been very few of those. All of our children are grown and live out of town. They came home for his surgery and helped for a week after he came home, they come back to visit for a day or so every other month, but otherwise, it's been he and I.

The first couple of months were the hardest, I do believe. I couldn't sleep and my eating sucked. I had no therapy and I don't do drugs very well and I'm not much of a drinker. I didn't want to burdon the kids with my woes and when I talked to friends, I never felt like they wanted to hear me whine. I spent a lot of time in my closet at the opposite end of the house or down on the dock, far away from the house, whailing uncontrollably.

Then I found these forums. I started reading and thought, "my God, there are more out there like me than I ever could have imagined." I still have my days where the dark cloud tries to suck me up, but most of the time I just buck up, barrell through and do what ever needs to be done. I post on the caregivers forum and do what I call "say it out loud" and find that there is nothing too big or too small that the loving people around here can't handle.

((((((hugs))))))
Deb

Goldie1

When I first heard my husbands diagnosis...
I felt like I was having an out of body experience. I can't even begin to tell you how I kinda floated through those first few weeks. You just run a gambit of emotions and I felt helpless and determined at the same time. It's been 4 months since his dx and it's been difficult most days but some good ones too. My husband has not been able to work because of pain and he applied for SSDI. Since he is stage 4, he got approved in 3 weeks. Unfortunately, it takes 6 months from date of diagnosis to get the first check, so we have to wait till Jan 2012. If you are still disabled two years from date of diagnosis, you are eligible for Medicare. You might want to look into SS since your husband took a leave of absence from his job. We have been living off our savings and my small paycheck from my part-time job. My husband hopes to go back to work someday if possible, but in the meantime the SSDI will help us pay some bills and for Cobra when his health insurance runs out this spring.

My husband's doc gave him a script for Zoloft and I am thinking I may need that too eventually. In the meantime, I have been taking a lot of deep breaths and working through it...it's not easy being worried and scared all the time but I will do whatever it takes for my husband to be as comfortable as possible. My brave face usually goes on whenever needed.

Take care and hugs,

Ellen C.

tommycat

This is most definitely the
This is most definitely the time to have an answer ready when someone asks you if there is anything they can do.
When I was diagnosed 2 years ago, my husband became not only a full-time worker, but a full-time parent to our then almost 4-year-old twin girls. One thing that was Golden was having homemade nutritious meals delivered to our home every other day during the week. (on the wknd we did take-out or something super easy.)
Maybe one your friends or workers could set something up through Lotsa Helping Hands or Meal Train? This was a godsend for us....and people really truly do want to help---this gives them something concrete to do.
Also, if you enjoy your work, I agree with the other post about keeping your job. It will help you keep your sanity.
I, and well as the others on this Board, am here for you.
Your friend in California~

keystone

WOW!
It amazes me reading all of these post from the wives! We mostly all feel the same way. We all feel the need to fix things and can't but somehow seem to adapt for the sake of our sanity, our family, or both. I feel for those that are just starting tj=his journey because it is numbing for quite some time.

I agree that once a treatment plan is in place it does get easier to deal with. My husband of 27 years was diagnosed 11-10 stage III rectal and he has had chemo/rad,surgery and will complete chemo almost one year from when it all started on our anniversary 11-18-11. I am lifted up every time I see another wife just trying to do what I'm doing by researching,encouraging or just being there for our spouses. Our children are grown but VERY active in their dads illness. My husband is so strong and I'm very thankful that we have friends and a church family to see us through.

I would love to corespond with you guys and keep up with our feelings and thoughts and certainly check on our hubbies. I know many are on FB which allows us to share our families. Please send a friend request to Stephanie Burdette Abbott in WV I'll look forward to hearing from you. PS just send a note your from the CCR board so I won't ignore it. Thanks!! Stephanie

Kathleen808

Hi Alex
Hi Alex,
I think you mentioned it in another post, you and I have a lot in common. I teach kindergarten (25 kiddos) and have 2 teenagers (I believe you have 3). We are in Hawaii and don't have any family here. Yes this is very hard.
I think other people have written such good advice and shared things that have helped them. I know that I take people up on offers to help. Yesterday, when **** was at chemo a friend came and cleaned our house for 3 hours. She said she was looking for a way to volunteered and realized she could help us. We have also had people offer to care for our 14 year old who has epilepsy and autism. Friends have come to watch her so we can go out when **** is feeling well.
I think one of the things that keeps us going is getting outdoors as much as possible when **** is feeling well. We try not to worry about the small stuff and instead figure out how to squeeze some good times out of the good days.
I know what you mean about the future and worrying about it. It is so scary to think of life without my husband. Then, when I get too caught up I realize none of us know that future. I work me a** off trying to find something to be grateful for. Some days I have to look really hard but I always find something.
Also, if you have any kind of spiritual support group I recommend you let those folks help you out. Our little church (100 laid back surfer folks) have been incredible. When they ask what they can do to help, I let them know.
I hear you about being stretched thin. Sometimes I am so tired. However, just like you I just put one foot in front of the other. It helps that when I go to work I am greeted by 25 beautiful smiling faces.

Thinking of you.

Aloha,
Kathleen

taraHK

great suggestions
Others have made some great suggestions -- and I am so impressed by what you have already put in place. I guess the only thing I'd like to add is: be gentle on yourself. Others may disagree but in my opinion, this is not the time to be worried about a dependence on anti-anxiety medication or that glass of wine. This is the crisis time (it *will* get better) and you need to get through it. I agree with the suggestion that you accept offers of assistance --IF you think they will help -- even if you are not the type who normally feels comfortable doing so (I wasn't!). Finally, one thing which really helped me thro some tough times was a relaxation/meditation tape (CD -- it's on my iphone now). Helped me more than I thought it would. There are some good ones out there.

Oh, and keep breathing -- out as as well as in

Good luck to you all xx

here4lfe

Great Advice here
I don't have anything else to add, as each situation is unique. My kids are grown, and as the husband to a para-educator I know that my job is not as stressful in the way yours is. In my experience getting into the routine is the main thing, as the vector of this disease and the energy level of my wife has ups and downs. I haven't gotten anything for anxiety yet, but I know I could use some help as I don't sleep well. Just take it one day, one thing at a time, and learn to ask for help.

Best

alexinlv

tko683 said:

What you are feeling is totally understandable...
I felt the same way. It is overwhelming and so much to do. We also do not have any family close so it is all us. I will say that it does get easier as you move along and have a treatment plan(My husband was dx in June 2011). So just know that things will get better. This board has been a great help to me just seeing all the stage 4 survivors helps me to encourage my husband. You are a step ahead of me as finding support groups for your kids. I need to do that. Can your husband get SS disability? I have heard that Stage 4 colorectal cancer is an automatic qualifier but I don't know that for sure. It sure would be nice if you could take some of your FMLA time now just so you can get organized and catch your breath. I'm so sorry that you are so stressed. Hope you are able to get some time off from work. Take care, hang in there, it will get better. Sending you prayers for strength to get through this time. Hugs, Teri

Thank you, Teri! Prayers to
Thank you, Teri! Prayers to you also. SS is someithing we need to look into right now. xo alex

alexinlv

cynthiapi40 said:

Anxiety sneaks up on you!
We have had such a an awful summer. My father in law past away on July 2nd. He was at work and fell to his death. He was the best father in law. Nothing but great memories. My husband and I was really having a time with that and still is. My husband has been such a rock. OMG, how does he do it.

Then my husband was dx with stage 4 colon caner on Aug 27th. He is still being the rock and said that we will keep it moving and he is going to do what he has to do. I on the other hand feel so much anxiety all the time. I was feeling it when my father in law past. So know it has gotten worse. I thought it was stress. My doctor gave me something to make me sleep and something for anxiety. It is good that you are speaking to someone. That is my next step. It is hard when a situation is out of your hands and it's not anything you can do about it.

I try to do things for myself. Like go to a movie, read or have a spa day. I know money can be an issue but we have to do things to get our minds elsewhere for a time.

My husband co workers was able to donate time to him. But I went online to see if he could get disability and from what I understand he can. You can apply online. I wanted to look at all of our options.

See if you can take a least a week from work, We took a weekend in the mountain after my husband was dx. It helped, then it was back to work for me.

I wish you well. We will get through some how, some way.

I am sorry about your father
I am sorry about your father in law! Sounds like we are both suffering from great anxiety. It will not go away now. Racing heart, trouble breathing, etc. What did your doctor give you? I have some xanax, but they don't seem to do much for me. Yesterday I had a great reflexology massage, which helped for the few hours after. I would definitely recommend that. (in a legit place... because some of them can be seedy). $38 for 45 minutes and it was incredible. the tension in my neck went away.

Take care and have a good day today!
Alex

alexinlv

keystone said:

WOW!
It amazes me reading all of these post from the wives! We mostly all feel the same way. We all feel the need to fix things and can't but somehow seem to adapt for the sake of our sanity, our family, or both. I feel for those that are just starting tj=his journey because it is numbing for quite some time.

I agree that once a treatment plan is in place it does get easier to deal with. My husband of 27 years was diagnosed 11-10 stage III rectal and he has had chemo/rad,surgery and will complete chemo almost one year from when it all started on our anniversary 11-18-11. I am lifted up every time I see another wife just trying to do what I'm doing by researching,encouraging or just being there for our spouses. Our children are grown but VERY active in their dads illness. My husband is so strong and I'm very thankful that we have friends and a church family to see us through.

I would love to corespond with you guys and keep up with our feelings and thoughts and certainly check on our hubbies. I know many are on FB which allows us to share our families. Please send a friend request to Stephanie Burdette Abbott in WV I'll look forward to hearing from you. PS just send a note your from the CCR board so I won't ignore it. Thanks!! Stephanie

Will do, Stephanie. It is
Will do, Stephanie. It is amazing that we are all feeling the same way. It is a blessing to have eachother to talk to as well meaning family members don't get it the same way.
Take care.

alexinlv

Kathleen808 said:

Hi Alex
Hi Alex,
I think you mentioned it in another post, you and I have a lot in common. I teach kindergarten (25 kiddos) and have 2 teenagers (I believe you have 3). We are in Hawaii and don't have any family here. Yes this is very hard.
I think other people have written such good advice and shared things that have helped them. I know that I take people up on offers to help. Yesterday, when **** was at chemo a friend came and cleaned our house for 3 hours. She said she was looking for a way to volunteered and realized she could help us. We have also had people offer to care for our 14 year old who has epilepsy and autism. Friends have come to watch her so we can go out when **** is feeling well.
I think one of the things that keeps us going is getting outdoors as much as possible when **** is feeling well. We try not to worry about the small stuff and instead figure out how to squeeze some good times out of the good days.
I know what you mean about the future and worrying about it. It is so scary to think of life without my husband. Then, when I get too caught up I realize none of us know that future. I work me a** off trying to find something to be grateful for. Some days I have to look really hard but I always find something.
Also, if you have any kind of spiritual support group I recommend you let those folks help you out. Our little church (100 laid back surfer folks) have been incredible. When they ask what they can do to help, I let them know.
I hear you about being stretched thin. Sometimes I am so tired. However, just like you I just put one foot in front of the other. It helps that when I go to work I am greeted by 25 beautiful smiling faces.

Thinking of you.

Aloha,
Kathleen

Kathleen,
Yes, we sure do
Kathleen,
Yes, we sure do have a lot in common.

I love my 27 smiling, innocent kinder kiddos too. When I look at their faces the stress melts. I took a few days off.

Treatment 2 tomorrow. I have some amazing friends who have been bringing over dinner a couple times a week. Trying to still pay the cleaning lady, although I know I shouldn't be as far a money, but it's a sanity thing right now if I can come home once in a while to a clean house!

HI is such a healing place, so it's wonderful you can get outside a lot. What island? Tony's sister lived in Maui and he grew up going to Maui every year. After his last treatment in Dec., before the PET scan, we are considering a family trip for Christmas if he is up for it.

Any teaching jobs in HI? (lol, but you never know!!)

Take care,
Alex

alexinlv

taraHK said:

great suggestions
Others have made some great suggestions -- and I am so impressed by what you have already put in place. I guess the only thing I'd like to add is: be gentle on yourself. Others may disagree but in my opinion, this is not the time to be worried about a dependence on anti-anxiety medication or that glass of wine. This is the crisis time (it *will* get better) and you need to get through it. I agree with the suggestion that you accept offers of assistance --IF you think they will help -- even if you are not the type who normally feels comfortable doing so (I wasn't!). Finally, one thing which really helped me thro some tough times was a relaxation/meditation tape (CD -- it's on my iphone now). Helped me more than I thought it would. There are some good ones out there.

Oh, and keep breathing -- out as as well as in

Good luck to you all xx

I agree about the meds...
I agree about the meds... but I am feeling like I need something stronger. The persistent anxiety, panic feeling has been settling in for a few days now and it is constant. Even after a good night sleep, last night, I woke to a racing heart. Yuck!

Just reading and responding to all of you on the board has helped me calm down. Thank you!