Help I'm Lost

a1l2i3x4

Hello.  My husband was diagnosed with AML several months ago, although hes been "unwell" for over a year unjtil his daignosis.  We have both been very healthy and the news this past fall was stunning.  I wont go into all of the stages you go through as most of you all have experienced all those "beginning"similar feelings - disbelief, sadness etc. My husband and I have beenmarried for 37 years - I always tell people we kind of grew up together.  Weve expereinced many ups and downs as a military family but always hung in there together and worked as a team. There are no words to express the quiet despair of watching someone you love go through all of this - but right now I feel I am at a breaking point.  I have been willing and able to walk this walk with him but in the last few days I think I am almost at the end of my rope.  He always had a bit of a temper but this was offset by his intelligence and ability to be mostly positive about life - but as he began to feel crappy for a year before we found out what was really wrong - in private his temper and mood worsened - a lot of this is due to the medications given to him - and I understand so much more than he thinks - the furstation and anger of beingsick, of not being able to do things you took for granted - but even though hes progressing well after his BMT he is angrier and surlier than ever.  On the phone to relatives and frinds he always tells thenm how great hes doing - but with me its a different story.  I understand all this intellectually and I have a perspective on marriage and life seasoned by time and experiences, but I feel like hes given up on trying to become healthy in mind and spirit, not just the physical aspect.  At times when hes calm I have talked to him gently about getting some help - he always just says he needs to be more patient.  After an outburst at me he'll apologize but my nerves are completely frayed because a few moments later he'll get so mad at something - I dont trust his words anymore - I try to stay quiet but its so hard and so very lonely.  The thing that makes me so sad is that hes always saying "I cant take this &^%$ **** anymore"  or everything is a f'n mess and on and on and on it goes.  I feel as if cancer is not only claiming him but anger and bitterness and hes turning into less of the good man he was.  Sometimes I want to run away but mostly I feel so sad and worried - if spomething happens to me who will take care of him?  Our adult daughters have been great but they have their own families and honestly - hes not the father he used to be - he cares about them but he can be so rude and always always talking about the cancer in some form or another. Im not that old that I dont miss a tender word or even a caress now and then - the only time he says anything nice is right after hes gotten mad and then he turns around and acts that way again.  I dont know what to do,I have no family that cares and no real close frends other than my daughters (my sons are too far away to really help) - but I am humiliated by asking them for help and confiding in them - its too much.  I  apologize for all of this, I know others have things much worse. 

Ladylacy

Caregiving

When my husband was first diagnosed in 2010 with laryngeal cancer he fought and fought hard.  First it was radiation and chemo, then in March 2011 it was surgery.  He was clear until May of 2012 when our specialist found a second primary at the cervical of his esophagus.  Very rare and unfortunately survival rates are very low.  Surgery ruled out due to previous radiation and surgery.  So he underwent another round of radiation and chemo.  During this time he was still fighting and he was still the man I have been married to since I was 18 and dating since I was 17 and still in high school.  Well he was clear but only for about 6 months when we found out that the 2nd primary was back, much larger and had spread to his lung.  He finally said enough and the only thing offered was chemo with no hope for a cure only to prolong and possibly hasten.  He was fine with his decision but less than a year later our oncologist decided hospice was the best thing.  My husband agreed, but I wasn't so sure.  And guess what I was right.  Once on hospice it seems like he just stopped being the same person and gave up.  He has been on in-home hospice since September 2013.  Now don't get me wrong, hospice has been great I just didn't feel it was the right time for him to go on it.  Now I wouldn't take him off because he is declining, albiet it slowly but he is loosing ground daily.

He will turn 78 this Saturday and up until he went on hospice he still loved to go and do things and work in the yard something he loved too.  His whole demeanor changed.  He also gets mad but because he has lost his voice and uses other means to communicate I don't get the full measure of what he is saying.  He puts on a good front for our sons (who during the whole time haven't been much of a help at all -- now I understand that 3 live out of state and all have families and jobs but when they can go on vacation with their friends instead of saying Mom I'm coming to come help that really makes me mad because when they need something they sure call home first) and the sons think I'm lying about his condition.  Several times hospice has said his time was near and I would tell them and they would come home and then question me as to the truth since he would rally and be better.  All they need to do is open up their eyes and look at him.  He is 6'4" and only weighs 117 lbs now.  

What I guess I'm trying to say is that I understand what you are going thru and many others do too.  The most important thing is to take care of yourself because you are important too.  I have told my husband that no one is guaranteed the next day let alone the next hour and I could drop dead of a heart attack before him and that makes him mad but it is the truth.  And what would happen to him, I don't know and there are times when I really don't care.  Caregiving is hard and when you love someone and have been with them your whole life it is harder to watch them slowly die than if it was fast, my opinion.  One of our granddaughters lost her husband fast to brain cancer and he was only 27 and I'm sure she thinks why did he die and my grandfather is still fighting cancer and he's old.

We are suppose to have a social worker but haven't heard a word from her in several months not that she would really be of much help.  My doctor does have me on medication to help me sleep and to help my nerves during the day when needed.  And I'm sorry to say but I do get mad at my husband and I let him know and then I feel guilty but there are times when it can't be helped.

Just remember you aren't alone in your caregiving and many understand exactly what you are going thru and many don't because they aren't going thru it themselves or haven't been thru it.  Take care of yourself and make time for yourself because you are important too.  

Sharon