A Prayer for the Caregiver
By Bruce McIntyre
Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!

you guys are really something. thank you so much for such encouraging words. they really do help. my husband right now is on ativan and vicodin. the new trial they are starting him on will include more meds but we dont know what they will want him on. i also take ativan to help with my anxiety. the hardest part for me is watching his fear and pain while trying to smile and keep positive thoughts in his head so he wont just give up. i believe he would have along time ago if i let him go that way. the doctors and family/friends are really amazed at him and the fact that he is still here being as sick as he is. we dont do much anymore since he is very tired and has terrible muscle and joint stiffness in his arms and legs now. we spend as much time together as we can. thankfully our kids are all grown. they are 22, 24 and 25. i couldnt imagine taking care of little ones while being a caregiver to this extent. our 22 year old son is in afghanistan, due to come home in february. the only wish my husband has right now is to take him to a red wings game when he is home, no matter how sick he is. kind of like a make a wish for a child. i will make sure that he is able to do that. he also just payed off our 24 year old daughters car to make things easier for her and to do something for her that she will remember that he did just for her. our 25 year old daughter and 1 year old grandson live in arizona. i flew them both here in june and surprised him. we hadnt met our grandson yet and he wanted to meet him, he was very happy that day. i am focused on making him happy, keeping him positive and try and give him nothing to worry about. he has one job and that is to try and get better or to keep himself here as long as possible, my job is to take care of everything else, including health and finances. i try not to say why me or why him but somedays i just want to scream at God or anyone who is around at the time. life can be cruel sometimes and this isnt fair to anyone who suffers from cancer. i have a wonderful husband and i was blessed for many many years of my life to have him in it. i hope that all of you kick the shit out of this disease and i hope that the research they are doing at my husbands expense can benefit you or your loved ones in the future. i wish you all could meet him, he is truly one of a kind.

Hello Wendy,

In 2006 my mother died of a massive stroke. I live 20,000 miles away. I remember the pain and agony of traveling in the plane. Literally slapping myself when I fell asleep thinking that God would not listen to my prayers if I slept. I lost my boarding pass and even could not check in myself at certain stop. I begged the lady at the check in counter sobbing, "I used to be able to think well but my mother had brain surgery and I can't think at all." She had her stroke Jan 11 and I arrived just in time for her to pass away. I was severely depressed and became withdrawn and anti social until 1 day my daughter saw me in the kitchen and said "Mom you are so unfair and selfish. You want to die now? Think of us too". That was a big blow on me. From that point I asked for help I went to bereavement meetings, saw a psychologist and took Zoloft.

I am telling my story because sometime we are stubborn and think we can handle everything. We want to be strong but we are not. We need to learn to ask help if we can't handle it.

I feel that OFC forum is a venue for me to reach out to others and at the same time all of you help me to heal and go through my mother-in-law's illness.

We don't know each other personally but there is a special bond between all of us. Stay strong Wendy don't be afraid and ask help. God bless always. Ina

Hello Wendy, I am new to this site and feel a little awkward replying to you when there are so many on here who must know so much, however your situation with Jim has really moved me to respond to you.
Firstly, I'm so sorry for you and can really understand your bewilderment, anger and fears. I think any way you can get through this is ok, whatever it takes. All the other advice given by others has been in my opinion spot on, look after yourself, cos if you don't you can't be there for Jim, exploring medications for you both as your situation changes and getting all those vital supports around you.
I write to you as all the females in my family have had cancer (all different types - I'm the only one to have had BOT cancer), my mum died at 54, my dear sister in law at 37 and 2 years ago my niece who I brought up after her mum died. My niece was a fabulous woman who had just given birth to a son and had a daughter of 2, so it fely so very tragic and unfair. What was worse for me was that I couldn't be with her as she died as she was living in NZ. We spoke on the phone the day she died. I had prepared a page of what I wanted to say but she started and said pretty much all the same things to me. It's wonderful that you can be with Jim right now, next to him to support and love. I do hope you can enjoy some of the time and not let it be spoiled by future worry and fears. Easier said than done. On the day she died my niece was taken outside to feel the sun on her face and the wind in her hair by her sister and she said it was such a gift. To be close to someone dying and to be alongside them is tough (I did this with my mum and sister in law)but I think somehow, we as carers can often connect with an inner strength (albeit often with a lot of background help)and get through even those most difficult of times.
Lastly I just wanted to say I managed an organisation here in Britain called Crossroads, which is set up to care for carers. Doing that I met many many carers and have listened to many tragic life situations and I know sometimes there isn't anywhere near enough support to assist people in their caring role. So I do urge you to accept support whenever and wherever it comes from. For myself I am in tears thinking of you right now and send you my heartfelt wishes for as positive a time to come as you can have together.
Lynne

Hi Wendy,
Wow. When I read your post I stopped half way through and got my husband to come and listen. By the time I was done reading we were both in tears. My husband said, "I feel so guilty." I understand what he means because we have lost several friends to cancer since going through treatment. No one knows why things happen the way they do, but please know that you will now be in our thoughts and prayers daily.
I wish that we could reach out and truly touch each other as we go through these things. I think the only people who can even remotely understand are the people who have lived it. As the caregiver I know how hard it is to watch our husbands suffer. The 5 months of tx were awful, as you say. There were many times that I would plaster on the smile and go about the day, but in the privacy of my shower is where I would cry. I had not yet found this site so I was going it alone. It was beyond comprehension, but all my friends disappeared. I was taking care of my husband, my 86 year old mom that had moved in with us the year before his dx, and 3 children that we had adopted 2 years before dx. I had my hands full and had to keep the house and finances going too, like you say. I thought I would never survive it, but I did and God sent people our direction who are now our friends. Some of our old friends came back around, but mostly our friends are new. I am wondering if the same thing has happened to you? Do you have a support system in place? If so, the list idea is a great one. Write down the things that need to be done and when folks ask, hand them the list. If you are on FB, put your needs on there if your friend base are close friends.
I am so sorry you are going through this. I'm glad your therapist directed you to us. I found this site toward the end of Kevin's tx. I was just about to lose my mind. He was just getting so bad and I didn't know what to do. I joined these forums and, like you, got immediate responses with true heart felt love and concern and understanding. I was not alone anymore. I knew what to expect a little better and could relax.
I pray that the next trial will bring some relief and comfort, but you will know when Jim has had enough. Don't be afraid to have frank conversations with him at that point. Let him feel some power and control over his situation. I'm so glad that you have a wonderful therapist. At least you have that physically present support person to lean on and confide in.
I cannot even imagine how you are feeling. I'm sure that some days are better than others and I pray that on those good days you can create some more wonderful memories with Jim. The game will be awesome.
I have a son in law and a nephew in Afganistan, so I know that has to be weighing heavily too. You are a remarkable woman. You are an inspiration to me. I am so impressed that you took your therapists advice and popped in on us and let us into your very personal and intimate space. We are here to stay!! Please know that these forums are watched very closely. You will be on our watch lists and we will see your posts pretty quickly. Like Charm said...scream, cry, yell, curse, praise, and know you are being heard.
Much love,
Kathy

thank you both for responding. i am fortunate that i do have a wonderful sister that lives only 10 minutes away, my best friend of over 40 years lives 5 house down and our 24 year old daughter still lives at home with us and she is a certified patient care technician specializing in older patients with dementia. my husbands family lives about 20 minutes away but i really think they are in denial about how serious jims condition is. he hides alot from people and when they ask he tells people he feels great. he doesnt want pity or to worry anybody. he can be in so much pain but people will always see him smiling. just today he said to me how weird it was but sometimes he just forgets that he is sick and for a few minutes everything is great and then he remembers. he tells me that he isnt ready to die yet but is starting to accept that it will happen. its so hard to listen to and im not ready to have the "death" talk. he has told me his wishes but we really havent discussed things like hospice or who he wants to leave certain things to. we arent ready for that yet. my friend lost her husband to pancreatic cancer 2 years ago. his name was mark and he was only 48 years old. jim wasnt diagnosed yet and i remember us talking after the funeral about how we could never imagine how hard that would be to watch a spouse die from cancer and how lucky we were that we were healthy. 3 months later jim was diagnosed with cancer. it has been a rollercoaster ride for almost 2 years now. my friends threw a benefit for jim on june 30th. it was wonderful. we had hundreds of people come out and support jim and his fight. we wanted to have it while he was healthy enough to enjoy it. he had such a great time. i have seen my husband cry 4 times. once when his brother died 4 years ago from diabetes, the day he was diagnosed, the day of his benefit and this past thursday when we were told that the clinical trial didnt work. jim is the perfect image of a man who enjoys life so much. i always said he was a 44 year old man on the outside and a 12 year old boy on the inside. he loves to have fun, play with our nieces and nephews, loves video games and pouts like a child when he looses. all the neighborhood kids love him and he is kind to everyone he meets. the saying only the good die young has never been more truthful then in jims case. if our life story of love, sickness and eventually heartbreak for me can make one person hug their spouse more, love their spouse more and realize what a gift it is to spend a healthy life with the other half of your heart, something that is going to be taken from me, then im okay with telling strangers details of jims illness. What I would give to have him healthy again..most of you were given such a gift of a second chance, use it well and remember how lucky you are. God bless you all and please pray that my jim can stay on this earth for a bit longer. im not ready to lose him yet, but then i again i dont think ill ever be ready for that.

Ok...I am crying yet again. You are beautiful souls. What a wonderful marriage you are demonstrating to your community. We do cherish each other a little more since tx, but the farther out we get the more petty we get again. Thank you for the reminder!
I'm so glad you have family close by. That is such a gift. There are some who go this whole thing alone, being the patient. I can't even imagine.
Thank you for sharing. We will talk again soon I'm sure.
Blessings,
Kathy

Hy Wendy,My husband was tacking care of me and peope were trying to help and we kept saying no. It took about 5 months before he would let someone in to just watch me sleep. We had our own Company and he was doing that by phone. I looked at him and said call this lady friend of mine and see if she will sit so he could get a break. That finally started to help him and me. I am still suffering alot of the side effects of cancer TX, but now I go to therapy to keep in the moment and am desperately trying to get my husband some help because now a situation came up for him. And I can't give back fully what he has done for me, but get him to talk to others support groups such as this one to talk about what its like being a care giver. I deal with the guilt and deals with to much again. So it is true do take some time for your self. Fix up your face when you come back from that little time so that he knows you are taking care of you too!
You will both smile and even become closer to each other. Hope this helps a little. I will definitely put you on my prayers list.

Wendy - it's so good that you have family and friends close by. Do let them help in whatever way they can. These are special times for you and Jim - times to feel the love you have for each other and to enjoy even the smallest of things which can be so meaningful - sometimes just a look or a touch can convey so much more than words can say. You are a wonderful caregiver and have shown such love and strength through all that you and Jim have had to deal with. I join my prayers to others' in hoping for you and Jim to have more time together and for some positive news to come with his treatment plan.

thank you all. im sorry it took a day or two to respond. unfortunately we had another emergency and jim was admitted to the hospital yesterday morning. we just got home. he was having chest pains and start coughing up blood clots. of course they couldnt find the cause other then the obvious, cancer. he is getting very weak and has to learn to slow down and get more rest. his body is betraying him now and i dont know if this is the beginning to the end or if he will stop coughing up blood once he gets it all out. it was a very scary couple of days but since they really cant do much for him they just sent him home with pain medications. i really appreciate all the support and i will continue to give you updates on jim health.