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Caregiving: Anyone else doing this alone?

Caregivers: Dementia | Last Active: Mar 22 8:00pm | Replies (89)

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@denise96

I am the sole caregiver for my husband who is dying from stage 4 terminal lung cancer and advanced COPD. We have hospice coming in, but they only come in twice a week, take his vitals, ask how he is doing, then they leave. They do take care of all of his meds. But my husband is also an addict. When he runs out of his pain meds and his xanax, he goes into panic attacks. The only reason he runs out is because he takes more than prescribed for a day. Yesterday was horrible. He was sobbing, shaking and then began screaming at me. He had me in tears and I did not know what to do so I gave him 3 of my xanax. He kept saying that he felt like killing himself. I did call a priest to come give him his last rites. His family is catholic but not practicing. He hasn't been in a church since he was probably 11 years old. But if I mention my minister he goes into a rage that he will only talk to a priest. After he screamed at me yesterday to get out of the room and take my God crap with me, I did. I will never mention God to him again unless he asks. Of course I will continue to pray for him. Then here comes this priest and tells him that evolution was real and that we evolved from animals. Sorry, I don't believe that for a second. But everyone is entitled to their own beliefs. OK, enough of that. But his sister lives in Pittsburgh and that is about an hour away from us and the traffic is horrible down in pittsburgh. So, they don't offer help. He wouldn't let them if they did. His other sister lives out of state. He does not want anyone coming to sit with him or help him bathe or anything. He hasn't showered in over a month and he won't let me help him either. He can be such a rude person and stubborn to the point where no one wants to help. I found out that he was very rude the last time one of the hospice nurses came and he was screaming at her. He, of course, did not tell me any of that. I will be home today when she comes. They don't deserve that kind of treatment. They have a hard job to do and thank God they are willing to do this kind of work. So, YES, it is hard to be the sole caregiver. Prayers for you.

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Replies to "I am the sole caregiver for my husband who is dying from stage 4 terminal lung..."

I’m so sorry you are experiencing this. I thought it was the function of hospice to keep the patient as comfortable as possible. Why wouldn’t they increase his meds so he feels better?

@denise96 Oh my goodness 😱What a totally dreadful situation. I feel sorry for your husband’s terminal illness and pain, but even sorrier for what you’re going through. It’s truly amazing how good you are to your husband, despite everything. You don’t say what he used to be like as that might be what’s helping you to put up with all this unbearable abuse.

My mother died from small cell lung cancer nearly 20 years ago and what a totally different experience we had. I cannot begin to imagine how my sister and I would have coped (my brother took off on Mum’s diagnosis and didn’t cope) but at least we did have each other and my father to support each other.

Mum like your husband wanted to stay at home and was fortunate her wish came true to pass in her own bed.

Mum was also very mindful of our feelings and we had to convince her she wasn’t a burden and that it was an honour to look after her. We also had to persuade her to take her pain meds as she didn’t want to take them. She chose to bear a certain amount of pain. She had always been incredibly stoic with any health issues (not many over the years but included sporadic back pain from a horse riding accident, tick fever, a hysterectomy, a broken arm and flu) and would soldier on.

I wonder what causes such a big difference in similar circumstances.

Presumably your husband would refuse to see a therapist to help his mental state? Being high might submerge the pain, but it doesn’t deal with the fear and anger.

I wonder whether cbd gummies would help if legal where you live? Unfortunately there were no such thing when my mother was dying.

I am currently in remission from stage 4 appendix cancer after extensive treatment. Mum was my inspiration during treatment.

I also hope and pray I’m more like my mother when the cancer comes back (it’s not curable) and when treatment stops working and I get a terminal diagnosis.

Given everything - including his addiction and abusive behaviour - I can’t help wondering whether the kindest thing for everyone is to put him into hospice 🥺💔🙏

Sending you both hugs and prayers 🙏❤️‍🩹