Love replaced by sense of duty

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maryCarther
Love replaced by sense of duty

Thank you all for reading. I am at my wit's end. Here is the situation: Husband of over 30 years has stage 4 lung cancer, heavy chemo, wasn't supposed to live past three months after diagnosis 2.5 years ago. He was always active, played sports, did all the house maintenance, helped the neighbors ... a very active man.

When diagnosed after his lungs had filled with fluid, drained, and chemo started, he came home, sat down, and never really got back up again. He expects to be waited on hand and foot - I work 50+ hours a week, and then continue with "his projects". His favorite saying is "On Saturday, we need to fix the faucet in the garage and on Sunday, we need to fix the fence board that snapped." and so on, and on... every Saturday, after I come home from 2 or 3 hours at work and shopping for the week, he has projects lined up that "we" need to do. Mind you, he has not lifted a finger in 2.5 years, aside from getting himself whatever he needs from the fridge, and use the bathroom. He spends all day watching TV game shows and comedy... and when I get home at night, tired, still have to put up the dished, fix something quick for dinner, dust, or mop or do one chore towards keeping the place clean, he has to share every comedy show joke he remembers. When I ask him to please let me do my chores, so I can sit down and rest, he accuses me of nagging and tells me to either deal with it, or pack my sh**.  "You're not the one dying of cancer, so until you get that privilege, shut up or move out," is another famous saying of his.
He never used to be like that. The morphine he is taking and the most recent chemo drug have made him senile, or I don't know what. He makes stupid comments, like after a day of work and house chores "you still have an hour to be productive, why don't you ...." (suggestion follows). 
I used to want to become a nurse ... because I used to like to care for people - did it with my mom, my grandad, my uncle. They all were civilized people, dealt with the . meds like classy people, and held their heads high.
What am I supposed to do? He won't tolerate a caregiver - we had a very nice lady from social services come discuss the option, and she left after he let loose a tirade of cuss words and told her to get the h**** out of his house... I don't want to do that to others.

I have even played hookie from work and met with a friend just to get away - but in the back of my head is the sense of duty, that I am lying to everybody, and I don't enjoy myself at all.

Any comments appreciated - need help sorting this out, please. I am a strong self-help believer but I am in this rut that I can't see my situation from another perspective.

Thanks for reading all this!

 

RenoViking
Understandable

It's tough being a caregiver, and even more tough when you have to work as well. You don't get any free time, but you get this weird feeling that you don't deserve it, because your significant other is in this situation. When your spouse is in that state of poor health, their mental stability changes, and it's easier for them to lash out. Especially since you're the only other contact they have besides doctors.

For the last year and a half, I have been my wife's full time caregiver. Before that was about 5 years of doing everything in the house, working a full time job, plus taking care of our son who is now 10. I was only occasionally able to go and see other friends outside of work, or have any time to myself. Now that I am her full time caregiver, things got worse, and more stressful. Plus the fact that we had to move into my dad's house didn't help. We found out that her being able to talk to friends, and get out occasionally helps tremendously, and medicinal marijuana (edibles) was a godsend.

As far as doing chores around the house, sometimes it's ok to just let them go a day or so. Maybe try to convince a friend to come help out once in awhile, or maybe even a couple, and have one distract him, as you get the chores done with help. Most importantly though, take time for you. Even if its a couple hours a week, you still need to take time out. Your spouse will never understand it, because they are where they are at, and not able to be productive anymore, like you are. They are even more frustrated about what's going on with their body than what you are.

I hope this helps a little

RachelTheStudent
I am sorry for the struggle

I am sorry for the struggle that you are going through. You sound like a tough women and a hard worker. I do not know how it feels to be in your situation but my advise is keep your head up and keep pushing! I wish the best for you and I will be Praying for you.

Sarah H
Leaving Suffering Husband Alone While Travelling

Hello,

Very briefly, my spouse has been in terrible--and increasingly worse--pain for the past two years.  He will probably have to stop working soon.  He is depressed, angry, frustrated and affected by drugs.

I had to travel for work to  a city we used to live in together.  He did not want to come because it brought back too many memories of days when he was healthy and happy (He has often, however, had physical and psychic problems.)  

I tried to devise a plan for him while I was away but he refused to discuss and our therapist did not feel it was necessary--only that he agree to contact his doctor if he felt desparate.

He is not doing well at all.  He is crying all the time, miserable, refuses to see people, is angry, etc.  I am on the phone with him a lot trying to help him feel less alienated.  Sometimes it helps (I have even set my alarm to call him in the middle of the night when it is the end of his day.)  More often than not it doesn't.  I feel terrible; I feel guilty; I am exhausted. I know it is hard for him to be alone when he is in such pain and I regret that I ever left him alone.  

If anyone has any suggestions, I'd appreciate.

Truth is....I really need some time apart, some time to myself, to restore and reenergize.

Thank you

gmsdma
yikes

Hello Mary,

I was very moved by your post and can relate in so many ways, although I am caring for my ailing mother whom I live with in her home and not a spouse--both presenting with so many challenges. 

My mother has been ill for well over a year (7 years ago it was breast cancer and alcoholism) -multiple hospitalizations and surgeries and diagnoses over the years. And she is an active alchoholic. 

Like your spouse, my mother spends her days watching t.v. and not saying one word to me other than dictating a chore or telling me about some game show.

While she can shower herself  (with aid of shower chair and other bathroom features) and even can drive short distances (mostly to get her alcohol),  she no longer cooks or cleans and is very demanding. I work fulltime, 3rd shift, and I do mostly everything--her laundry, sheet changing, cooking, mopping, shopping, paying bills, lawn care, often met  with criticism and with rarely a thankyou for anything. Most times I cook and she just throws the stuff out! 

No family member or friend or neighbor has helped out--in spite of their initial promises of such. And I am already contributing a great deal financially to the household and cannot afford hired help on a regular basis--which my mother has expressed her opposition to. I did hire a home companion while I went on a much needed vacation and she was not at all happy...but it gave me peace of mind.

I try to epress my frustrations to others to no avail---

Anyway, I do not have any definitive answers.   I just wanted you to kow that I do feel your pain and can unfortunately relate. 

I do think setting boundaries and sticking to them (in spite of guilt) is key to some form of self sanity---but takes time and practice and is not at all easy.  I have found it so challenging  to try to practice compassion and self-care while being insulted or made to feel bad or guilty or constantly being barked orders at. I aslo think it is most important to talk with others in the same position to keep one feeling like he/she is alone or going insane! (this post is my attempt to begin that process)

I even got ill myslef at one time and my mother chastised me stating "well, who is gonna take care of me now?" With no regards to my well-being or quality of life. 

It is no easy task to care for an ill person. You have my understanding, compssion and prayers. 

maryCarther
Thank you all for your thoughts

I appreciate all of your thoughts and sharing your situation. It feels good to see that other people understand my feelings. It does not validate how I feel, but I at least know I am not alone. (Group Hug)

Fast forward - update of sorts. IN the meantime I have lost my job, got hired three times, but could never take the offered job, because husband has developped abandonment issues. Every time I leave the house, I come back to some sort of medical emergency. He works himself up so much about my absence that he loses bladder control, or starts vomiting until we have to go to the hospital, or he goes on a rampage when I come home from shopping. I con't leave past one hour. 
Tomorrow I am starting my old job back, part-time in the mornings. Today, he has been vomiting bile almost non-stop, but refused to go to the hospital for medication. I don't care. I am going to work tomorrow. And he will have to learn to deal with it, or remain very, very sick.

gmsdma
It has been so time so hoping

It has been so time so hoping you were able to persue your goals and are not suffering any inconsequential consequences.

Truly hoping all is well and that you are more at peace and feel strength form the necessary boundaries you have to set.

maryCarther
As usual...

Thanks gmsdma, I just saw my doc today, and let him know what's going on. He recommended I go see a therapist to help me deal with my (his) issues, and him being also my husband's doc, he recommended we get hubby in to see a psychiatrist, and we both instantly knew that was NOT going to happen. :(
I've gone through a long period of losing all control over my life and having to play by husband's fiddle, with him getting more and more vicious and verbally abusive. He now dangles a small life insurance over my head, that he says "it takes but a phone call to cancel it." 
My old job is about to end also, since I cannot even complete my 5 days of 4 consecutive hours. My boss is getting tired of phone calls two hours into the work day, with urgent decisions needed immediately (such as what's for lunch, has to be decided right now).  If I don't answer, I come home to drama, accusations of having been with a boyfriend and the old "I think it's time to cancel that life insurance policy."

On the other hand, his new treatment with Afatinib has him gaining weight, feeling a lot stronger, eating like a horse and getting more and more confused about reality.  He will furiously demand that he is right with everything: i.e. Speed limit is 35, he is driving at 55, and insists, with threats to drop me on the side of the road and I can walk home, that the speed limit is 55. 
He will veer across lanes, and answer my concerned look with comments like "If they don't like my driving, they can back the *F off." 
He told the radiation specialist that radiation treatment did not help, that it was his healthy constitution that brought him back "I am a real G**D*** man. I don't need radiation to heal me." ... Fortunately the radiation doctor thought it was a joke and laughed... I knew he was dead serious.

And so it goes on. It's getting weirder and weirder as time goes on. I live on my toes and always braced for the next unexpected onslaught. At least I now have started to document my side of the expeirence with my doctor, and maybe we can work around it. 

maryCarther
Not even a month later

I thought I'd follow up with the lack of progress.
Meanwhile he has lost another 20 lbs. He has dementia of some sort, being very confused about what day it is, facts, concepts. It is maddening, since he gets mad when I do not understand what he is alluding to. Even in his confused state he manages to disrespect me. I went and saw a therapist twice in the meanwhile. She tells me I am an abused wife, I need to get out. Really? So what about the sense of duty? I can't just leave him to his devices. Strange advice.

His oncologist seemingly has abandonned him. Where he used to have tests and labs and appointments weekly, my call for help with the confusion has generated a lame response of him having an MRI at the end of the week. No advice how to handle the confusion. He**, he took a shower last night at 1 a.m. and again at 4 a.m. ... because he thought he had an appointment.. which he didn't.

I am sleep deprived, because he fidgets around every two hours, which wakes me up, because I have trained myself to be alerted if he moves unusually. Then he sees me awake and starts babbling about things. If I tell him I need to get some sleep, he starts cussing me out, saying I need to grow a backbone and get over my whining. I have lost my job over his shenanigans, calling me constantly, needing me (not). Fortunately, they rehired me with a part-time position, 3 hours a day, so I can devote more time to him, but money is getting so tight. Even the credit cards are running out ...

It's all escalating, and I do not gt any home health assistance like people keep advising us to get. I feel like I'll lose my mind if I don't get some REM sleep. How long does this go on???

 

gmsdma
Thanks so much for the update

Thanks so much for the update...and wow. You surely and clearly have so much on your shoulders. A long debilitating illness is tough enough for anyone involved, dementia is another beast entirely. It is progressive. Most certainly as you describe--maddening.  I do not profess to have any answers as it is my opinion that everyone has to decide for him/herself what is best. However, this is not a burden to carry alone.  You cannot care for someone else if you aren't sleeping, eating, getting some alone time.   I would strongly suggest getting some help asap. If there are no family or friends willing or able to help hire professionals.  Even if just for a few hours a week.   Try asking for an assessment from the National Association of Aging (look them up online and contact your local agency online or via telephone) to see if he will qualify for any services. I think he should.   Can you sleep in another room?                                                                                                                                                                                   I am so sorry for your frustrations.  Caring for an ill spouse or family member is a monumental task--very, very demanding and isolating. And it may go on indefinitely.  Not many people seem to understand it or want to.  Keep reaching out--keep seeing a therapist--even if you have to find a new one who understands and respects your decisions about staying and help you manage the feelings associated with it. 

Wishing you peace soon--or at the very least some relief.

 

 

 

 

 

 

maryCarther
He feels the need, the need for speed!

Hello, gmsdma.

Thank you for your comments and reading. How is your mother? How are you? Any changes, anything positive?

I will be going to the oncologist with husband. Between CT scans and MRIs they have found that all his lymphnodes are grossly enlarged, there is deterioration in his brain, shrinkage such as in dimentia. Doc called me Thursday and told me that they are going to sugges tto him on Monday to stop treatment, since with the latest drug it has just exploded. 
The radiation oncologist will suggest to not do Whole Brain Radiation Therapy. Their profssional advice is to stop and just feel better. But since Husband has not been officially declared incompetent, he will be able to make the decision to keep going and treatments for as long as they will do them.

The hard part will be that the doc will tell him he can't drive anymore. He's been enjoying a drive - but veering into oncoming traffic, almost running over pedestrians in the road ("What the He... are they doing in the road. They need to move!"_ ... and I have been pretty scared riding with him the very few times he has had the need for speed, as he says... and then he goes 45 in a 75, wondering why people are racing past him: "They are all going to get a ticket! Where is the police when you need them." and inside of myself, I nod... yes, I wish the police would pull him over.
More developments, soon. 
I hope you are having a chance to get a break and reboot your mind. 

 

maryCarther
Meanwhile

Checking back in after a month. How are you, gmsdma?

Meanwhile, he has been enrolled in hospice, he is at home, no more treatments, no more doctor appointments. He's been confused and dazed since October 16, wasting away. Refusing all outside help, nobody is allowed to visit, and I sit with him 24/7. 
I cannot sleep in another room, because he is terrified waking up alone.

After much talk of needing gas, traveling up the German Autobahn and other talks of travel, he suddenly rallied today. Started eating after 17 days no eating, just drinking juices. Where other people are happy to spend a bit of time with their loved ones as they remember them, I remembered how much I did not like him during these past 2 years since his diagnosis. What a mean, mean man. But they do say that this is only temporary and a step towards the end.
How much longer .... ?