Worn out caregiver

I've been taking care of my husband for 51 months without help.  His children ignore us.  They have excuses ranging from how busy they are to his shortcomings as a father when they were children.  They don't call because they're afraid they'll be asked to do something.  They just wish he would "die like he was supposed to" to quote one of them, so they can stop feeling guilty.

The cancer is finally gone.  But he's a mess.  He has chronic pain, cause unknown.  He takes enough pain medication to drop an ox and sleeps at inappropriate times, then wakes me up every hour or so at night. 

Morning is hell.  He wants pills every five minutes, forgetting he just took pills, because they haven't kicked in yet.  So he nags and follows me around demanding pills he isn't supposed to have.

I have headaches.  I'm exausted.  I'm depressed.  I can't think straight.  I lost most of my friends in the first two years. My family has already done way too much to ask for more.  His siblings live far away, but they've at least helped out as much as possible from time to time.

I thought when he got that clean bone scan we'd be on our way back to a normal life.  Instead it's worse, much worse.

I don't want to talk to people because I'm expected to cheer up.

I'm angry at him for his constant demands.  I'm resentful that his children are jerks.  I'm getting sick and he never stops with his demands.  Never.  

I don't know what to do. 

Hello Jane,

Sorry to hear of your plight.. I am a caregiver for the last 10 months.. yes it is exhausting and we get little thanks.. I have no close family , so rely on myself .. to do most everything.. friends are around.. to say nice words. but no real physical help there.. this cancer deal is nasty before , during and after... try to connect with a local caregiver group to vent.. you will not feel so alone.. this is a good site... some days I wish the nightmare was not hanging around... but I know whining will get me no where... there is a reason we have been put in this uncomfortable position... I look for an answer, but know I don't have the key...

I pray a lot and find some comfort knowing that I am not alone... there are a lot of strong caregivers on this site, especially KarynK on the brain cancer board... I wish I could say I was that strong.. this woman is a true inspiration....

Don't give up the fight.. and be good to yourself.. take walks, sing in the shower and just listen to the birds... do simple things to bring that smile back to your face...

Take one day at a time,

Best

On Oct 13, 2012 5:48 PM janegrant wrote:

I've been taking care of my husband for 51 months without help.  His children ignore us.  They have excuses ranging from how busy they are to his shortcomings as a father when they were children.  They don't call because they're afraid they'll be asked to do something.  They just wish he would "die like he was supposed to" to quote one of them, so they can stop feeling guilty.

The cancer is finally gone.  But he's a mess.  He has chronic pain, cause unknown.  He takes enough pain medication to drop an ox and sleeps at inappropriate times, then wakes me up every hour or so at night. 

Morning is hell.  He wants pills every five minutes, forgetting he just took pills, because they haven't kicked in yet.  So he nags and follows me around demanding pills he isn't supposed to have.

I have headaches.  I'm exausted.  I'm depressed.  I can't think straight.  I lost most of my friends in the first two years. My family has already done way too much to ask for more.  His siblings live far away, but they've at least helped out as much as possible from time to time.

I thought when he got that clean bone scan we'd be on our way back to a normal life.  Instead it's worse, much worse.

I don't want to talk to people because I'm expected to cheer up.

I'm angry at him for his constant demands.  I'm resentful that his children are jerks.  I'm getting sick and he never stops with his demands.  Never.  

I don't know what to do. 

If his cancer is gone does he still have the pain? Sounds like he may be addicted to the pain killers and his mind is craving the opiates? 

I would check it out with his doctor.  There are doctors that specialize in just pain management. 

Get away for an hour or two. 

 

 

Dear Janegrant:

First, I'm so sorry to hear how difficult it is for you and that the children are such jerks about it.  I know, sometimes it is the way that they deal with a sick parent, but they are adults and they need to step up.  It seems that they won't though and I would like to throw out some suggestions:

First, I agree that he needs to see a pain doc.  I have a friend who has had stage 4 breast cancer for 17 years.  She's had many different types of treatment and they have given her a long life, however, the side effects have been debilitating at times.  Most often though, they go away.  So, seing a pain doc might shed some light on what is going on.  I would first talk to your oncologist, he may be able to pinpoint the problem right away.

Next, you need a break.  You will have to search, but there are many sitter services, some are paid on a sliding scale, who will come and stay with him so you can get away. There are even overnight services.  Google them in your area. It would be great if you could get away for a couple of days with a friend or family member.  Maybe his siblings could care for him for a couple of days.  It is imperative that you get some rest so you can continue to care for him.  You are right, you are getting sick. It is inevitible with the stress you are under.

I wish I had a silver bullet, but each situation will be worked out in it's own way and time.  Feel free to contact me if you need to vent.  I'm a good listener.

If you have a church home, call your minister and set up a session with him/her.  Check with your cancer center, sometimes they have connections with counselling, support groups, etc.

Many Blessings,

jan

Dear Jane,

I hope you find some initial comfort in knowing that most of us who are caring for someone have felt as worn out as you do, for similar reasons. I have been caring for my mother-in-law for over a year, in my home. I find that I sometimes just have to ignore her demands, and respond that I am doing the best that I can do for her. She is such a sweet lady, and her disease and treatments have changed her. I remind myself of that - and that none of this is her fault. I have only recently realized that I need to give myself a break sometimes and have dinner with a friend, do some shopping, or treat myself to something nice for ME. These things make us better for THEM, as we come back a little refreshed. I, too, have no help. Jane, dont lose your friends-you need them. If they don't call - call them. Tell them you appreciate and need their friendship. People just don't know what to do for us, or even what to say.

We can only do the best that we can, and we just have to remember always that we do it with love. This is the only gift we have for them.  Stay in touch...

Eleni

Hi Jane - My heart goes out to you and my prayer is for restoration of your strengh and indurance to cary on with this amazing challange of having to take care of your loving husband. From what I have been reading many people that go through the cancer therapies after the cancer is gone all of the chemicals injected in the body will cause inflamation throught the body. You may want to look into what Dr McCord has reported about Oxidative Stress and inflamation. Here is an online video that may give you some answers. http://www.youtube.com/watch?v=0iHqqKDYGKs

Many people have recovered from free radical damage as a result of prescription drugs. I hope that this helps - You are a fighter solution is on the way. You MUST believe this. Be blessed in all that you do.

Robert 

My husband died of lung cancer in March, but even before his final stages was exhibiting some of the symptoms you are are talking about. I drew up a list of all his meds and took it to our primary doctor and had everything reviewed for side effects and overall effect of combining so many different meds. That resulted in a change of dosing and the elimination of several. This helped a lot with the mood swings and inappropriate sleep cycles, which kept me up all night and day with no relief. That helped me with my mood swings and irritability. He is probably addicted to the pain killers at this point, and as someone else wisely suggested a pain management specialist would be able to help. I don't know how long he was treated or with what, but most of the cancer treatment drugs cause vitamin deficiencies and rapid decrease in bone density. This causes you to hurt all over and feel cold to your bones. So although the cancer may be gone he still sounds like a ways off from recovery. You may want to go back to your primary care doctor, the oncologists are through with him now probably. I also went through this with my mother, who is a breast cancer survivor of five years this May. She had all kinds of supposedly unrelated issues afterwards. These hung around about two years until everything finally cleared up. She just turned 94 and is doing better than ever. So don't give up until they get it right. Your mental health is counting on you. And yes take some breaks(more than 2 hours).