Feeling so low. Need help. But there isn't any.

The logistics of that are involved. This man needs 24/7 care. I can go out to the store for an hour if he seems okay. That's about all the alone time he can be left. He can't get up from a chair and get into the bathroom without help. To be away from him, I'ld have to have caregivers in place around the clock. Not so easy to arrange. I never know when a carsgiver will call out sick. The onky real break I get us when he goes into a hospital, rehab or nursing home. I felt better when he was in a facility. I'ld visit him daily, but go home to my own place every night.

But there would be other problems. He would fall. No place watches him as closely as I do. He got a pressure sore. He got raging urinary tract infections. He wouldn't be kept clean. He lost weight. He would be sitting alone among others with more severe dementia. These nursing homes are basically orphanages for old people.

I feel unwell today.

As someone who once worked in the long term care unit of a hospital as a CNA, some patients who indeed have dementia, I can say what you say is true. Patients wind up with urinary tract infections, bed sores, left in the "dayroom" with other patients (thought behind this is that human interaction of some sort is good for them), they get full baths weekly but sponge baths daily and if they are unable to toilet themselves - it can take up to an hour to two to change depending upon (1) their ability to let someone know and (2) the amount of things the CNAs n nurses are already handling (changing someone may not seem like a lot but it is actually something many need - and some people are combative while changing them, and sometimes it can take 5-10min to take care of so if it is not a "planned" change - then it has to be done when it is not something urgent going on). I used to feel really bad for the patients who even had part of their mind still - bc they would look around and see nothing but misery and think "this is what I have to look forward to" and many of them had nobody come and visit them. When I would have extra time, I would visit a little while with these patients. But you are right. Nobody can take care of nor love an ailing loved one as can someone who truly loves them. The problem is it takes a lot out of them too. So just be good to yourself too and take care of you. That's all.

❤

Big hugs, anyway.

I hope you can find a bit of peace here and there.

Crypts, you articulate very well what it's like in a nursing home. I appreciate someone having a grasp of what that's really like.

I went out to the laundromat this evening. Once I got out of the house, I began to feel well . . . really well. I thoroughly enjoyed getting the clothes washed, dried and folded. If I can just pull myself over the hump I have to get over to get dressed, put on shoes and go somewhere. Then I start to feel okay.

I took my meds, so I'll soon get sleepy. I am afraid of waking up tomorrow all depressed again and finding it impossible to pull myself out of it for hours. Maybe if I hit the shower when I wake up. Mornings are just so very hard.

I remember those days all too clear. I actually got fired because one of the patients that I visited with made the comment that he liked me n someone took it to a sexual meaning. So basically - they frown on them having any kind of real enjoyment.

I completely understand about being afraid of waking up to depression. I feel that way everyday now.

I pray you will awake refreshed feeling, Rose.

Take care. ❤

Now I feel even more hopeless. I feel like I can't cope. I am coming unglued.

Don't feel hopeless, Rose. I'm worried about you.

What is causing that?

[QUOTE=Rose76;5865352]I am sliding and sliding down. I want to ask for help, but I don't expect there to be any. In the past, when I've gone to the local psych facility, they'll say, "So what is it you think we can do for you?" It sounds more like, "Whada u want from us?" So I haven't gone there in a few years. Probably not in four years.

I take Elavil 50 mg every evening. It's a tricyclic and about the only thing that ever helped. I tried a dozen different drugs back around 2010 - 2012. Went in-patient, etc. I gave up on all that and just went back on taking only the Elavil. I take some Vicodin for moderate soreness of various bodily aches and pains. That seems to actually help my mental state as well.

My sleeping is screwed up. My eating is screwed up. I'm awful tired. Every morning I wake up deep in the quagmire. It can take the whole day to get out of it. Today I never got out of it.

I'm desperate to shake this off. I think maybe if I was ordered a stimulant in the morning. I don't have any real faith that anything is going to help. But it couldn't hurt to try something.

I have frequent bouts of feeling well. When I feel well, I feel quite well. I go into that state on a regular basis. Yesterday I was trimming the rose bushes outside. So I was doing pretty good just last night. But I keep sliding down. I'm neglecting things . . . like I haven't looked at my mail in weeks.

I'm being irresponsible. There's stuff in that mail that's important.

Even just to talk to someone who'ld understand. Not that I want therapy. I did that to death for many years.

I feel like, "What's the use? No one is going to understand or want UOTE]

Sorry not good on comp. I hope you can get some help. I might be as depressed as you. Pray each night to pass. Not going to happen probably. Hate myself for being so weak. Rarely leave apartment, maybe get mail, put out garbage. Shopping, usually once a week. My girlfriend thanks me for any small thing I do. Sorry for talking about me so much. I really do hope the best for you. Take care, jim I have a medical plan where I can have therapy sessions for $30.00 groups for free twice a week. Have stopped going to 1 hr. grouos, too depressed for depression get together groups. Sounds crazy even to me. Afraid of saying too much, will end up in hospital again where they load me up on meds. Don't help. If you do have access to non expensive therapy or grouos, please take advantage of them. You deserve all of the help there is.

That day on the 11th, I think, I felt so good. I really had turned a corner. Then I sunk back. I can't even trace how. I should keep a journal. I got to feeling good again, then sunk again. I was up at 4 a.m. today tending to him. It's been a long day. I over-react to things. He can just look sideways at me, and I give him a lecture on how he's demoralizing me. I gotta let some stuff slide.

Last night I got all upset over him having the attendant give him sweets and no decent meal. So he got cursing.

The VA nurse came today. I told her we've been fussing at each other and that it's getting me down. She was nice.

I only had three hours sleep last night. Then I get so keyed up, I can't sleep. I have to try and maintain some composure.

I'm also worried about me. This has been a worse tailspin (over the past month) that I've had in over a year. In April of last year I told his kids and the VA that I couldn't sustain what I was doing. I was ready to let go. Then the social worker told me about two programs that I thought would help a lot. So I hung in. Not since April, 2016, have I been this discombobulated.

I did find another attendant who is coming tomorrow.

Rose - when was the last time you took some quiet time for yourself?

I'm not asking about how long he can manage alone - I know that from working with ppl who had dementia in the past. I am asking when the last time you took time to yourself was. Without him.

I am not trying to be rude or mean or heartless either. I am simply trying to find out when your body n mind got the break it needs to repair n replenish.

*hugs*
❤

So - when did you last take some time for yourself?

He has a home attendant who comes for 8 hours 3 times a week. So I do have those blocks of time to get away. But that's not enough time to truly get away. I never sleep in my own apartment anymore. I run home for a few hours at a time. Yesterday we went to the emergency room because he had symptoms of a mild stroke. But the symptoms went away and he was okay. I ask myself if he will go on like this for another year, or two or three?

If only nursing homes were better places. I think they're awful. So I keep him at home. I go up and down, moodwise, like a yo-yo. Sometimes I feel fine. It's a cycle. Sometimes I wish we both were out of this life. No intention . . . just a wish to be released from this trap of circumstances.

Hello Rose76. You recently helped me with dear, succinct, wise advice. I will return the favor, mostly with an affectionate hug. Other wise, what I find helpful when I am overwhelmed and have distinct problems is to separate each issue, so I can stop circling around my pain, and then take some small steps towards a plan. Maybe you could look for a person to listen to your depression issues; Investigate places and people for loved ones with Alzheimer's; Support group for care givers and a plan for your future that helps you smile and challenges you and is just plain silly in parts; Nutrition and exercise plan, massage therapy; Someone to talk about trust and family support issues; Someone to talk about anger, how to feel in control of your life, your well being; A writing club for wonderful people like you. My friend gets help from different therapists for specific issues, to seek education. He chooses a few things at a time so life is a constant education, one thing he chose was how to be a skilled lover. I like that idea. Well, now is the hug part, you are a lovely lady. What ever things you want to clarify in your life are details because you were born beautiful.

I understand the feeling of wanting to be "released from this life". It's a miserable feeling. I currently share it - albeit for slightly differing reasons as you well know.

What may be beneficial to you - in those times the attendants take over - make it a point to go home, and just "do you". Let them take care of him. You - relax, or cook for you, or go shopping, or clean, or whatever you want to do. But - put him aside for those hours. And - why not have attendants for 16hrs or 24hrs at least once a week to give you a time to "breathe"? Just some ideas..

Thanks, Curry, for your generous praise and encouragement. I am goimg to ask at the VA about support groups. People who've never done this can't really know what it's like. I certainly didn't know. Since he's much older than me, I always assumed I would end up his caretaker and thought I knew what I was in for. But I didn't expect he'ld be this dependent for such a long time - years. I didn't expect that years of my life would be so utterly consumed by his situation. I have no legal or moral obligation to keep taking this on. And our relationship wasn't so great, ever. But we have been very close, despite our ups and down, for quite a long time. He means a great deal to me, though, at times, I'm not even sure why.

Crypts, my dream is to have 24 consecutive hours all to myself. The person who was here today as a sitter tells me he's open to doing more short stints, even spur of the moment. That could be very valuable.

I'm no saint. At times, I'm irritable with him, beyond what him being snappy to me warrants. What's sad is that the care he gets from me, even at my worst, seems arguably better than what he got in the nursing home on the best if days. Nursing homes that are largely financed by Medicaid are not up to the standard of places with mostly private-pay patients, not that those are great, either. (I worked in some of the best, where the patients were all wealthy.) It makes me fear growing old.

Today I got out for four hours and I feel pretty good now. This instability of mood is wretched. I have to do matter at sticking to some routine.

Thank you for the posts above. A large part of my difficulty is that I am so isolated. Neither of us has family within thousands of miles. It helps for someone to hear and empathize.

Rose, I really hope something works out for you in terms of help.

I don't have anyone to look after. My problem is being a shut-in because of my mental health issues. I fight that. Not being able to get out for any length of time, like you are experiencing, has a terrible effect on a person's well being. Speaking from my own personal experience, it does far more harm than you ever realize at the time. Each day isn't so bad. But the cumulative effect causes awful problems.

Like with Crypts, I would not presume to tell you what to do. But would you please consider some more that you are asking more than is reasonable of any person. I know what it's like to keep thinking, "I've got this. I can do this." But being cooped up with just a single person is still isolating. You know how much better you feel when you get those breaks.

Sorry if I sound like I'm lecturing. And I know your choices are very limited. Please consider this some moral support.

Do you have 2 or 3 attendants? That way you can maybe schedule them back to back one day to give you a 24hr break? None of us are saints .. especially when we are worn down. You are probably better than I. My fuse is very short these days. There was a time I would have bent over backwards, sideways, and twisted again just to meet someone's needs to make them happy. Now, I have come to a place where if I don't get my needs met I am miserable - too miserable to care much about the needs of those around me. That's not saying I don't care or that I don't try to help - I always care n always try - it's a matter of the amount of effort I put in. You go all out even after you are almost dead. I can't do that anymore. I used to and it literally almost killed me. I hope you won't let it do the same to you. I sometimes feel guilty for not being like that anymore - but most of the time, I am proud I found the strength to look after myself first.

After all, if I don't, those people I help - won't get my help anyway - bc I won't be around to give it to them.

So, make sure you look after yourself too.

Your mood swings could be caused by your mental health - but I would put more "money" on it having to do with your physical health atm. Stress. Exhaustion. Worry. All those things can cause mood swings when they last too long of an extended amount of time.

I really do not want to sound like a "downer" to you, or as a "critic" - if I do, I apologize. I really am just concerned about you though you have garnered both my admiration n respect.

I appreciate your insight, Crypts, which is wise and balanced. Scheduling some attendants back to back so they cover 24 hours in a row is what I've hoped to do. Right now, I've got two attendants. Plus a prospect or two on the horizon. The one who was here today is kind and companionable to my s.o., talking with him so pleasantly. But he's never worked in a nursing home. His hands on skills are not the greatest, and he's somewhat allergic to going in the kitchen. While I was gone for 3.5 hours, my guy got a container of yogurt. My s.o. is sensitive to what he thinks the attendants want to do and won't ask them to do one bit more than he thinks they really like doing. I have yet to meet one that has any interest in cooking. Frying an egg seems beyond them. I worry, if I'm gone a whole day, he won't be fed enough. These are mature adults who have children and even grandchildren. The VA offered to send out a dietitian to teach them about proper nutrition and meal planning. What did these individuals do when they had kids to feed? They know perfectly well what constitutes a decent meal. Ignorance isn't the problem. They bring very little initiative to their work. The agencies pay these folks less than $10/hour. (We're a low income region.) Now that I control their pay, I raised the wage to $12/hr. Today's attendant I paid $14/hr because he came for a short shift on short notice. I hear the nursing homes are only paying $15/hr. And that's for taking an assignment of 10 - 15 patients per nurse's aid. I need to learn more about leadership and motivating people. I'm not a complete pushover, but I try to avoid alienating or demoralizing anyone who comes here to work.

A big problem is my own fluctuating mood. Today I feel good. Right now I feel great. I'm baking brownies and catching up on housework I neglected when I was depressed. I'm practically hypomanic. A psychiatrist who treated me for 6 years for dysthymia suddenly said to me one day, "I do believe you're bipolar." This was after I had gotten upset with him and very angry. In 6 years a cross word was never exchanged. Under severe stress, when I felt he was minimizing a difficult problem I faced, I spoke very angrily to him. So he pronounced a brand new diagnosis, like he felt he was finally discovering the real me and was astonished at the revelation. I do have severe changes in mood. I wish he had really been interested in helping me, but he terminated treating me. It kind of seemed like his sudden new diagnosis was retaliatory. He was, it seemed, very offended by my getting angry. (Doctors can't just "abandon" patients. His way out was that he knew I had an appointment to get a second opinion from another pdoc.)

Crypts, I don't feel like you're being a downer, at all. I am in a stressful, draining situation. But these extremes of mood have been there since before my current situation.

Cepheid, I appreciate your perspective. Not having had children, I never before had to be responsible for another human being around the clock. I always pitied mothers of very young children because the responsibility is relentless. You can never call in sick - like in a job. His visiting nurse is also encouraging me to consider letting him be placed in a facility. Tough as the current situation is, I don't relish the thought of being alone all the time. It's like I would be trading in one big stress, just to get an alternative big stress. If I could just stay in a decent mood long enough to organize getting the extra help that the VA and Medicaid are happy to pay for, I could make things better for myself. A quadriplegic in this neighborhood is in the same Medicaid program and has organized a good retinue of home attendants. My problem is I don't stay focused on recruiting help long enough to pull together a crew. I keep getting upset and not following through on anything.

I don't mean to challenge every suggestion. I am hearing the posts above. One thing I need to accept is that probably no one is going to come in here and do things exactly as I want them done. But that's not the end of the world. He'll survive, and, if I am willing to delegate work to others who may not do it perfectly, it will afford me a chance to recover. Then, when I return, like today, I'll be nicer to my s.o. And, after missing me for awhile, he'll be nicer too. If me getting some time away means a few things don't get done exactly like I would do them, I could try just accepting that.

Meanwhile I've gotten a bunch of responses from Craig's List, but I don't think I'll just throw caution to the wind and let these applicants come aboard with no careful vetting. That process is work, and I've wanted there to be an easy way to get help. I've been avoiding the effort it takes to recruit. Getting out of bed and getting dressed and staying out of bed would help a lot.

Thanks for saying you don't consider me a downer n that you appreciate my words.

You said one of the things that bothers you about the guy who offered more work is he doesn't like cooking. Would you be adverse to maybe setting aside meals he could just "warm up" for him? Or maybe on those days - have sandwiches (ham or egg salad or bologna) and salads (garden or potato or macaroni), easy things to "whip up"? Things that are mostly already "pre-packaged" n just awaiting assembly type of thing.

You also seem worried about "how" and "what" the attendants do for him. Perhaps give them an outline of what it is you expect? Show them how you expect it done and how often.

As far as your psychiatrist - he sounds like a jerk. You are allowed an "off day" without it meaning you have a "new diagnosis". You are under a lot of stress. You are not getting the rest you need. That causes mood swings and he should know that better than anyone else. I am sorry you were treated poorly. *hugs* You say the mood swings have been there since before this. Since before you met you SO or just since before you started taking care of him? Has there been a time in your life you can say you were not severely stressed n if so during that time were the mood swings present?

I don't see you as challenging everything - just explaining more clearly how your life really is. I just don't want to be coming across in bad ways n I feel I do that a lot these days.

I really would be cautious of CraigsList.

Yeah, I do leave stuff that just has to be heated in the microwave and stuf from the deli (seafood salad, coldcuts, cheese.) I have on hand every kind of paper plate and plastic cup. I get baby back ribs that just have to be heated up. I have to plan out each and every meal and specify what to make. I used to tell them that there was a variety of things on hand and to just suggest things to him and use their own judgement. Mistake. They would just give him cold cuts or heat up a can of soup. I have convenience foods in the freezer. I had to go over the directions on the box with them. (Microwavable mashed potatoes have got to be stirred half-ways through.) I had to ask not to store left over moist food in paper bowls. I encourage them to go for take-out now and them. My s.o. buys them a meal when they do.

I absolutely do have to make a sheet listing duties of the day and run off copies. I've just put off doing that out of sheer laziness. That's where I've got to make more effort.

That's crazy that you can't trust them to just heat up things. Seriously that doesn't take much common sense at all. I'm sorry they are that incompetent .

I would have been fired on the spot if I couldn't handle basic duties like that as a CNA. We didn't often have to do them but there were times heating things in the microwave was required.

Sorry you're feeling so down, Rose. I appreciated your recent posts in the Psychotherapy foum and so looked for some other posts. I'm​ feeling extremely down, too. Given up on therapy and meds don't help me much. Caring for some elderly cats but nothing like what you are doing for your friend. I did care for my terminally ill husband but it sounds like it wasn't nearly as long as your friend has needed care.

I called the crisis line a couple of times the last week. One person said it well -- sometimes it's just life. It can wear you down. And of course the isolation can make things really bad, too. Thank goodness for the internet.

This thread is old, but I hesitate to start a new one . . . on a stale old problem.

I'm failing to even brush my teeth twice a day. I'm in the same old night gown now for days. I think I might call the social worker at the VA and say I have to step back from caring for my boyfriend . . . at least temporarily.

I don't know how that's going to work out. I was up at 4 a.m. this morning, giving him a shower. He had an episode of incontinence making that necessary. I didn't mind doing the shower, but I see where I can't leave him with a paid care giver at night, when this might happen. So hiring more care givers won't give me the break I now feel I need. I'll still be afraid to leave him at night.

I didn't worry so much when he was in facilities. At night, I went home and slept okay, figuring there was staff of multiple persons to care for him.

But this is the holiday season. I had told myself to just hang in there till we get through Christmas. But I feel like I can't hang in there. Maybe if I could get a two week break and then go back to caring for him.

I'm back in bed. He's eating a bowl of cereal with bananas. I told him I'll get back up in a little while.

We're supposed to go out for dinner this afternoon. Somehow, I have to at least manage that.