Caregiving: Anyone else doing this alone?

Yes it is ONE day at a time. I am finding new ways to handle some issues and always look for a little positive in the day. The main positive is my spouse can be very mad about something when going to bed but usually does not remember any of the negative from yesterday.

Every day is a new fresh start. Bless you, and your love of your spouse.

Hello. I am at the stage where my wife is giving up. Everyday now I deal with "I am dying, I am dead. You are killing me, why are you doing this, I don't want to be here, why can't I just die". Has anyone else experienced this? It is so depressing but I know that she can't help it, she is just expressing how she feels. Its just that it is everyday. Sometimes all day long, constant talk of dying and death. Is this normal?

Gosh! How does one answer that?
My husband has never been diagnosed really, I am just going by what I have read etc, the one thing I do know is I heard there is no cure for mcl and a friend who was recently diagnosed is on medication and she said she feels nausea all the time, back to your question? My husband has said the odd thing about his memory but we have never discussed it, I don’t know where I would start so I keep plodding along. It’s hard to go through life disregarding her comments but I don’t know what to suggest other than maybe get a few hours to yourself for some quiet time. My heart goes out to you..

I hear that too. I just say things like your labs are good. You vitals are stable. You have a good appetite. My parents complain a lot. I actually think much of it is habit. Still, not much QOL based on their comments. They do much better when getting a lot of attention from family and friends. Once people resume their own lives with work and personal matters for the week, they resume their complaining again.

My wife is way beyond resuming her own life, she is not able to to anything. She spends much of a day laying down on the couch after I get thru the bath and dressing. I do agree totally on your comment re attention from others. I recently had a house visit from her case manager from the local health authority and during the visit, probably 90 mins, she was the nicest person and never mentioned death or dying or wanting to get out of here. As soon as the manager left she want right back to it. Not sure how much longer I can deal with this but we do, one day at a time. Thanks for your comments.

I understand. It’s disconcerting when I’m trying to get proper medical evaluation and my dad suddenly kicks up his heels while sitting in his transport chair and makes a sound of enthusiasm. This, after months of weakness, complaining, falls, ….I have some video I’m going to share next time.

Hi @dkhere, are you caring for someone on your own?

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.

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?

Denise, I’m sorry for your suffering with a person who hasn’t the ability to appreciate all you have to do to be with him. This makes this work of giving so much harder. To acknowledge his suffering while being clear that he must not mistreat you may not get a proper response, but it might relieve some resentment and/or anger you may have toward him. Your service is really an act of selflessness and a dying to your natural desire to just not be with him as others have responded to him. I’ll pray for courage and self care for you and the ability to step back from any hurtful things he is doing in his frustration.