[Rose76]

Just within the past few weeks, my boyfriend has been hospitalized twice in 2 different hospitals. We're just home almost a week, and I see a fair chance he may be going to the ER tomorrow. I'm not feeling depressed, but I'm becoming seriously apathetic, which kind of has the same result: I'm not getting stuff done.

My bf had an extreme result of me giving him a sedative last night. Just a low dose. But he's been mostly sleeping for 24 hours. I very rarely give him this med, Xanax. But last evening he got pretty distressed, and I'ld tried everything else to settle him. (I gave him one pill, which was 0.5 mg.) I've only been able to get him to the bathroom once today. He only had a small bit of food and about 7 ounces of milk. He just tells me to leave him alone.

Were it not for him being terminally ill with cancer, I would have called paramedics by now. Instead, since he seems comfortable and quite content, I'm doing as he asks.

I'm in a better frame of mind when I'm busy doing things to help him, or get him attended to at the hospital. I seem to be mirroring him. Since Sunday afternoon, I've scarcely eaten or done anything I should be doing. He does in his recliner. I sit here doing nothing, but just waiting for him to fully wake up. I just sit with my phone browsing the Internet . . . just waiting.

I've posted enough threads that my story is familiar. He needs complete care, which I've been doing for years. Since one year ago, he's been designated as terminally ill. Interminably ill is more like it, it seems. I don't want to lose him, and when he's his normal self we enjoy the companionship of having our meals together and watching things we both like on TV. But this last 12 hours has me getting into a bad state.

I tell myself to grow up, get up and do things I should be doing. But here I sit. From the stress of the last hospitalization, my lip has broken out in a herpes lesion. (That happens to me as a delayed reaction to stress.)

I thought of phoning someone. But people don't know what to say that they haven't already said - "You have to take care of yourself too." I don't want to wear people out with my situation. So here I am making a thread.

I have to eat something, brush my teeth and take a shower. Then go to bed. I should have done all those things hours ago. Instead, I've just sat here, watching him sleep . . . and looking at my phone.

I guess I would like some reassurance that I'm not a total loser, using my bf's illness as an excuse to act like a vegetable. Now for the first time in days tears come.

[skiguy18]

You're not a loser at all! You are a patient and brave provider taken care of someone who is very ill. That is no easy task. God bless you and your boyfriend. Hugs to you.

[MickeyCheeky]

Of course you're not a loser, Rose76! You're VERY strong and I admire you for that. Many people would have given up by now, but here you are, still standing and doing your best. I think it's normal that you'd feel this way after all you've been through, so please don't feel guilty about it - although I'd still recommend to eat something! And please, feel free to cry as much as you want - crying can be good. It's a way to relieve your stress. Please don't give up. I hope things will get better soon for you and for him. Remember that we're here for you and that we care about you. Feel free to vent here as much as you want. You know we'll listen to you and won't judge you. I'm here for you as well. Feel free to PM me anytime. Let me know if I can do something to help you. Wish you good luck! Let us know how it goes. Sending many hugs to you

[Rose76]

Thank you for the kind words.

I just got mad and woke him up. He opened his eyes and was pretty alert. This inert state he's been in is not totally from the Xanax. This man enjoys being unconscious. He embraces it. (Back in his drinking days, he would drink himself into a stupor, so he could luxuriate in the peace of oblivion.)

I just told him that 7 a.m. tomorrow is the deadline. If he still continues in suspended animation, then I'm calling the ambulance. They can take him to the VAMC, where they can do what they like with him. They have a long-term care unit that handles the terminally ill. I could very reasonably ask that they provide me with respite from caregiving.

I know it is a feature of longstanding caregiving that one can become irrationally angry with the person they care for. This is not just that. He is more than willing and capable of taking advantage of me. Since I just kind of read him the riot act, he has wakened up and consumed a container of yogurt. Next he has to help me get him up into his wheelchair and to the bathroom.

I have spent most of my life in caregiving the elderly, and I am caring and patient. But once in a while a patient needs a kick in the fanny. Once in a while I need that myself.

I think my bf has just largely recovered from the tranquilizer he got more than a day ago. I think I may recover now from whatever has ailed me.

[Rose76]

MickeyCheeky - hi. I did not see your post till just now. Thank you for the support.

My bf got over being snowed by the Xanax, and I got over being upset with him. He could not help how it affected him.

To have help with things like the proper use of sedation, I want to get palliative care services for my bf. (It's kind of like hospice.) The care coordinator from his insurance company is new and clueless. My bf is about as qualified for this benefit as a person can get. But the Medicare insurance company is giving me the run around. They tell me to just get more help from the VA or from Medicaid. This has me outraged. Palliative care and hospice are both benefits of Medicare, and he has a right to get either of them through his Medicare HMO. Later I will make a formal complaint.

I don't want to make this thread about health insurance. What I'm having a bigger problem with is keeping focused and getting through the day in an organized way. I'm pretty good at figuring out how to pursue benefits. But I'm having a hard time pursuing how to get in the shower or have dinner made.

My mind goes around in circles. I start to Do one thing, then flit over to something else. Making a plan for the day and sticking with it is what I'm failing to do. Yesterday I kept getting texts and phone calls from the VA and from the insurance care coordinator and others, and my day was consumed with texting back and getting nowhere. I was just venting at these people and wasting loads of time. I was constantly on the phone.

Even my bf sees that I'm becoming an overly wound up, disorganized mess. It's like a form of ineffectual hypomania. My mind is whizzing around, and I'm busy, busy . . . but I'm not getting done what I was intending to do. I meet all his essential needs, but the apartment is becoming a mess. A home attendant is here, and I'm not using her help very effectively.

Since I know exactly how I'm screwing up, I should just stop it. But I keep mismanaging my time and attention. My bf advised me to just stop answering the phone. That's actually a good suggestion.

This being mentally distracted off in all different directions is awful. I'm doing this to myself. That's why I feel like a self-made mess. I try to rationalize that I've been in an increasingly stressful role for a long time. That's true, but I'm making it all worse.

I have to do better today than yesterday. I have to be smarter about how I communicate with others involved in my bf's care. I have to shower and brush my teeth and make a schedule . . . not just let my mind wonder and roam all over the place.

[Sunflower123]

Rose...I think you are incredible!!! My mom fell on an escalator NYE and my brother has been very ill so I’ve been caregiving for maybe 4-5 weeks and things are getting better every day. I was so exhausted and brain dead that all normal and usual activities fell away. I am in awe of what you’ve accomplished. You are so far from being a loser. Your situation is in reverse...you’ve been at this a long time and the situation is getting worse and you are still getting the job done. Please give yourself credit for the incredibly difficult load you are carrying. I know you are hard on yourself when certain things don’t get done. Please cut yourself some slack. You’ve got your hands full.

[Mopey]

Rose, I think you are wonderful. An ANGEL. A SAINT!!!! Plus you still keep a sense of humor! Personally I'm glad to hear you entertaining other ideas on your friend's care so that you can get at least a breather.

Please do keep us all posted. :group hug:

[Fuzzybear]

(((((((((( hugs ))))))))))

[Rose76]

Thanks for the encouraging responses. Yesterday was better, and I got more done. If I build on that, I'll be okay.

[MickeyCheeky]

You're wonderful, Rose76! Remember that you're stronger than you think. You've got this. We're all rooting for you. We all love you here. Sending many hugs to you

[Mopey]

Originally Posted by Rose76

Thanks for the encouraging responses. Yesterday was better, and I got more done. If I build on that, I'll be okay.

Absolutely, Rose. Keep building, to the best of your ability.

[Fuzzybear]

(((((((( ))))))))

[sarahsweets]

I would strongly caution you against giving him your xanax especially if he is on painkillers.

[Rose76]

Originally Posted by sarahsweets

I would strongly caution you against giving him your xanax especially if he is on painkillers.

I've never had a prescription for Xanax. I've never been on Xanax, myself.

The Xanax was prescribed for him by his PCP back in May. At that time, after being diagnosed with cancer, he was having episodes of anxiety. Over time (just a matter of weeks) those episodes became less and less frequent . . . then stopped.

I report to his care team at the VAMC exactly what medications I give him and his responses. When he stayed so sedated, I immediately got in touch with them.

His use of painkillers is also very minimal, as pain does not seem to be much of a problem to him most of the time. For that I am very grateful.