Hi..I am probably here just looking for some support (and quite honestly, sympathy!)
I have been on AD's and antianxiety meds for 12+ years. They both work ok. The last 4 years have been hellish, starting with the death of my sweet dad 4 years ago, then later that year my hubby was dxed with Primary Liver Cancer (due to his having HepC)..he had a liverTransplant in 2006, I nursed him back from that, the HepC returned with a vengeance within 6 months and he began treating that with Interferon/Ribavirin (similar to chemotherapy)(AKA, poison) He has been on this TX for 76 weeks, with the goal of 84 weeks total. No assurance that this will even cure him, but it buys him time. The Tx is unbelievably brutal on the patient and quite frankly is no walk in the park for the caregiver, either. Total change of personality in him, anger, dismissive behavior, many days he is just plain mean--it's the drugs, I KNOW, but the words/actions he uses often hurt me badly.
Our last kids flew the nest and I began working so we could afford the drugs. I am a caregiver to an elderly woman with advanced Parkinson's. She is sweet most of the time, but can be a real pill to work for. Many days I come home and Hubby either has not made it in to work (sleeps a ton) or has gone to work and had a terrible day. He is not capable physically of anything remotely strenuos, so I do everything around the house & yard. If he is home, he is asleep.
So basically, I have been a non stop caregiver at some level for 3-1/2 years. Very little gratitiude from Hubby but a whole lot of second guessing about every decision I make. I feel extremely demoralized and very lonely. I know that the TX is going to end, but my depression and memory of the crabby, mean person my husband has been for the last 3 years is really scaring me. He is 100% into his TX and doesn't even notice me but to complain about something (For example, I rarely cook breakfast for him and he brings this up all this time...well, I have to go to work early and often he is still in bed. Does he require breakfast in bed everyday?) I also get in trouble if I forget to renew his meds or buy the wrong kind of tea....he is not totally incapable of doing these things, he just doesn't wnat to do it.
My client is also a huge challenge and in a few weeks I will not be desperate for the money and will likely quit.
Guess I don't know what I am asking or saying..maybe just venting a little. The New Year is sad for me as I lost my dad on Jan.1st. I was blue all day yesterday and when Hubby asked why I was being so "morose" I told him and he said 'My dad died too and I got over it". Well, I really loved my dad and I wasn't being anything other than a little pensive, not bawling or freaking out.
I know I am 98% worn out from the last few years. I am scared for the final verdict of my husband's TX. If it doesn't clear the virus, he will have to treat again. I truly don't know if I can handle it, if my love for him is still string enough to go another round.
Funny thing, kind of. I refilled my Klonipin scrip the other day and hubby says "You have to get off those things" and I said "I take them for one reason: so I won't kill you" . Think I scared him a little, because he thinks he's been such a peach thru all the drama.
Any words of support would be nice. I know I am ony presenting my end of things....so I guess you can take all I have said with a grain of salt. Thanks for listening to my ranting!
Sounds like you are worn out. Who wouldn't be? Just keep on talking about this, maybe even to a councelor? Your husband is getting the attention and care he needs - maybe you want to look into the same for you.
I love the comment you made to your husband about the Klonipin. That's a good one!
Is there a verse that says "Blessed is the caregiver"? If not, there should be, from what I have seen in the lives of my mom and mother-in-law regarding caring for an ill husband. Both of these women did such a wonderful job of caring for their husbands, but they, too, faced times of despair, disgust, aggravation, and total exhaustion.
To think that in addition to this work for your hubby, whom I understand you love (and would like to have back in the place of the grouch who returned in his place!), you are caregiving as a career, which is asking more than you than you have to give! Too much for one set of shoulders to carry, my dear!
So take "mini-vacations." Read a book (or maybe a short-story book, one story a day). Go to a movie with a friend. Join a caregivers support group. Network for a job with incentives to enjoy working (as obviously you are a dedicated worker who would be appreciated!). Have a "Calgon, take me away," soak in the tub. Call a friend who listens without judging. Talk to a friendly minister who will not judge you for what you need to get off your chest...ill feelings, anger, etc. Pray for strength.
If your children are not too far away, call and ask them (or those near) to come by for a weekend visit and give you a few hours or a whole day to yourself ... if they are old enough to fly the nest, then they are old enough to face the reality of parental illness (this is something my mom did not realize; we would've helped more with my father if she had leveled about how tired and alone she felt!).
Take care of Liz50, or you will be the one in the bed needing care!
And finally, tell Mr. Grouch how you love him and want to stick with him "For better or worse," but that you'd like "better" some of the time; he might even take you out to dinner, even if it's a fast-food burger!
Hang in there. And use this forum and every other avenue available to speak out and unload so that you don't fill with so much resentment that you explode!
I hope you are a religious woman; if not, I still said a prayer for you ... be strong, but don't carry the world around; even Atlas had trouble with that!
Thanks for your sweet comments. I needed to hear them. When my hubby had his liver TP one of the docs was very concerned about me, which I found unusual and also very thoughtful. Hubby is a terrible patient and altho not terribly demanding, he will not feed himself nor even get out of bed much of the time if I am not pushing him a little. This has grown very old over the last 20 months he's been on the Interferon. I know I can last another 7 weeks, but wow, it's been rough at times. He had a stroke last summer, (unrelated to the HCV) then underwent a PFO closure (heart surgery). Kind of a wild year for us.
I do have 4 out of 5 of my kids nearby. My son (only son) lives in Yuma, AZ and that's kind of right down the road if you consider 1-15 to be a "road". He and his family have come up several times during the year, but they aren't particularly "helpful"..my 4 daughters are all here in town and they are great. Nobody can really spell me at the caregiving part...and I am fiercely independent and do not want to burden them. They do get how sick their dad is, but I shield them from his moodiness and snippiness with me. I want them to come out of this still loving their dad.
Mr Grouch is somewhat aware that I am done in, but maintains that I am not really a part of his TX, so doesn't "get" that I am very much affected by his health.
This too shall pass, I know. I am a very religious person, funny you mentioned that, without my faith I know I would not have made it this far. I doubt my hubby and I would even still be married, but I am in this for the looooooong haul :)
Thank you for the supportive words...defintiely things I already know I need to be doing, but my depression has worsened considerably over the last few months and caring for myself has really taken a back burner. I'm going to try to do better at that....
...and venting on these boards is great..I talk "personally" with quite a few other women whose hubbys are TXing and we are a good support to each other, I think.
Thanks again..and BTW, do they still even MAKE Calgon??
It sounds like you are taking care of everyone BUT yourself. The fact that your husband does/may have a terminal illness and his anger is being directed towards you isn't fair. You need to talk to him, sick or not, treating you badly is simply no acceptable. You then do home care, when I read this," I thought wow this woman is a masochist", but you are doing this this because you have to. It sounds like you are just stretched thin. Once you don't have to pay for that expensive medication, you'll have less stress. You need to reach out to your kids and family, it's okay to do that, it really is. When both of my parents had heart attacks, they wanted to shield me, but that actually made me angry at not knowing the full extent, I'm their daughter, and it is my obligation to help, plain and simple. Your husband needs to talk to a professional, and learn ways to cope, as maybe you. I think you've been dealing with a difficult man for years, when you said if it wasn't for your relationship with God you wouldn't have stayed with him I can imagine your situation would be extemely difficult even if you weren't diagnosed with depression. Like the posters have said, self care, what ever it is, do it. Be kind to yourself. What ever God's plan is, take a moment to connect with your own relationship with God. I have found it's been quite healing to me.
Keep posting, and let us know how you are doing.
Thanks for your response.....yes, I am grateful for my faith which helps me to put things in perspective! I know that had my husband finished his TX on the 72 week mark I would not be experinecing all this. HE elected to go longer and hesitatingly his doc approved...reminding my hubby of the huge toll extension would take on BOTH of us. It's been right on the mark and hubby gets sicker and sicker, He has a terrible cold right now (2nd one since his TP which is amazing) but he won't get out of bed and won't care for himself so I am a little angry because I HAVE to go to work.
At the outset of my job (18 months ago) it was no more than minimal care of a woman who has Parkinson's but was VERY hugh functioning. Sadly, she has rapidly deteriorated and is now like tending a 2-y/o, complete with tantrums. I stay out of a sense of obligation as she has lost much of her memory, but she does remember me..so I know I am appreciated by her family. The pay is beyond lousy...so I am asking for a raise tomorrow, which (if I get it) should make me feel a little better about the grueling kind of work it can be. And yes, I HAVE to work, so I don't have the luxury of quitting and looking around for something better right now. Hubby's drug bill runs over $1000 a month right now.
My kids have their own kids, well the ones who would be helpful,, anyway. The other two daughters are married and trying to finish college (oh, hey, one did this semester!!) and neither of them can handle anything very stressful. I do tend to be a mother hen and keep a lot to myself so they won't always remember their dad as this crabby, sick man.
It's almost over and I keep reminding myself to just BREATHE and let it go. Vhurch yesterday was wonderful and I was reminded of my many, many blessings. I do need to focus on those....and find some Calgon....
Ah, my sense of humor might be returning??? (Got a lot of sleep last night!)
Wow. You are carrying a lot on your shoulders. Doubt many could do it with this much grace.
Sleep is good. It's amazing how much sleep is tied to having a good mood. :)
Make sure, as others have said, that you take care of yourself. I know that it's really hard to put yourself in there - but you don't deserve to come at the bottom of the list. And hun, that's where you are putting yourself. You can't properly care for others if your tank is empty, and I'm amazed you didn't run out of gas months ago.
It helps to remember that it is the drugs/pain that is changing his personality but on the same hand it's hard to still take that from a loved one. I have many chronic conditions, most of which cause a lot of pain, and I know I get snippy when it is up there. It's hard to focus and hard to not be mad at the world. But I still have to put the brakes on and remember to say my please's and thankyou's and kick my hubby out of the home so that he can have some fun and relaxation - he's my caretaker and it's a really tough role. We're both in this together. Some patients just forget that in the overwhelming pain/fatigue/etc of their condition.
I'd get any books on caregiver support that you can too. Look up something called 'compassion fatigue' because I'm betting that you are probably there hun.
Just checking back in to make sure you're holding up!
My husband has chronic rheumatoid arthritis and barely walks most of the time, and has been this way for several years tho only in his fifties, so I know in a way how frustrated you both are right now!
My husband's med regimen is severe and expensive too (one of his meds is actually an old chemo drug), so when I became ill and the psych said I should quit work, it was quite an adjustment for both of us, esp. since I had worked in the same school for 34 years. But God knew I needed to stop and smell the flowers, and grow my own zinnias, I think...and I guess HE gave up on my ever deciding on my own that it was time to quit! I still dream I am teaching, even after a year and a half, which is frustrating, but hey! those antidep. dreams are crazy anyway!
My insurance from school forced me to apply for soc sec, but that didn't get approved, so I struggle along like everyone else, but at least I have a low-paying retirement plan to rely on.
Glad you got some rest and were uplifted by your church service!
Take care of you ... and share with your kids just a bit?! I am as you are; keep most to myself too, which of course does wonders for our depression!
Have you had depression continuously for 12 years, or does it come and go? I am asking because I had to change doctors and am wondering after a year of this regimen if I should wean down to a maintenance dose or stay where I am, at 187.5 Effexor XR and one Clonazepam at bedtime.
I feel okay, but just a bit braindead, emotion-less, quiet, and fatter than the old me! ha
Anyhow, I see the new male doctor this week and thought I needed some direction; my old doctor was female, but she left unexpectedly and this male doctor is the only one nearby that I could find! He does not inspire the confidence the other psych did,even tho he is kind.
If you ever have time to send me a little advice, thanks ... if not, I'll know you're holding up the sky again and don't have the time or energy for more weight!
Thanx, Liz! PS...I haven't seen Calgon in years, but I guess we can always dream.......!
Hey..thanks, nice to come home after a rotten work day to some kind words. Hubby is sick with a cold and left a real mess for me so I am not his biggest fan right now..tho it will pass.
I do try to take care of myself, but this elephant of a problem is pretty hard to look past. As I said, I really do not want my kids to remember their dad like this...& honestly, what could they do for me? They DO NOT want to hear anything negative about the TX or their dad (scares them, I think) and so I was venting to my old therapist until my daughter was in a bind and I had to step in and pay for HER therapy..long story....so I don't see my therapist any more. Hopefully daughter will get a job with mental health care coverage. I know I should have made her stand on her own two feet, but it was between committment to a psych hosp or expensive out of hospital therapy. She's doing better...one more big emotional issue to deal with!
JJ11--I think I have suffered from depression for many years but was always able to stay one step ahead of the little black cloud. 12 years ago I had a gangrenous gallbladder removed, and I had been so sick with this for so long that by the time I had the surgery, I was a mess. I became suicidal and that prompted me to get help. Luckily the Zoloft worked (after Paxil, Prozac and something else). I have been on the same dose for years, almost got off it entirely before hubby was dxed with Primary Liver Cancer due to his HepC.
I don't know about messing with psych meds that are working. I had a bad experience trying to switch to one that might allow me to lose some weight (LOL) I about climbed every wall I saw. I also take Klonipin and the reason why is sleeping in the other room ;)
He drives me nuts, seriously, if It weren't for the Klonipin I know I'd leave him. I am lucky in that I have the same psych doc for the last 12 years and he is very sympathetic to the "cause". Hopefully once TX is over and he begins to recover, he will be better in many ways. He wasn't a real touchy-feely kind of guy to start with and this all hasn't changed that.
Well--I am going to bed. It's not even 8 but Hubby has the remote and the wild eyes that say he is going to stay up watching old Westerns all night. (Why not? He's slept for 5 days straight!!) .
Just so you'll think I am even crazier than I am...18 months ago I invited a young man who has no family or home to live with us. I am his sort of "foster mom" becasue he's 23 and that's way too old for foster care;) but he is a big needy kid.....oh yeah, I am polishing that halo;)
Now I feel a driving need to find some Calgon. (Unless it has drugs in it that are released in the water and soaked in thru the skin I am not interested in it.)
Thank goodness we are all holding up the world, right?
G'night, and thanks.
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