i need some advice on being a longer-term caregiver
my husband is recovering from a nasty bout of pneumonia that landed him in the hospital over the weekend. the infection was so bad that there is a possibility he will be on oxygen for two or three months and i'm going to have to provide for us in every way.
the monetary stress we'll face once the bills start rolling in is one thing, but my bigger concern is how i can be the most effective in caring for him. he is only 38 and is having a hard time wrapping his head around this, especially since it's been years since he has had anything worse than a mild cold. he woke up early this morning, yelling about how being on they oxygen just isn't going to work and really isn't an option and i can tell he's already getting depressed about it.
how do i help him understand that he was very, very sick and this is what he needs to get better? how do i help him understand that these things happen without rhyme or reason? i didn't handle this morning very well because he woke me out of a dead sleep with his upset, i just yelled back at him that he doesn't have a choice and to just get used to the thought (and i feel like such a jackass for it).
i already talked to him about me making an appointment for him to go to someone, but he flat out refuses to do that. how do i get him to understand that just getting out and sitting in the sun at the park for a bit will help him feel better? how do i get him to eat? how do i get him to do anything but sleep?
i need to know how to be patient with him, i need to know what i can be doing for him, i need to know what i can do to keep myself going and keeping up with everything around the house while caring for him and working full time at a job i hate. i'd go back to my therapist but there just isn't going to be money for it.
i've already started trimming a bit of fat from the budget and can do enough trimming that we should be able to scrape by provided the rent doesn't go up too much with our next lease (moving is out of the question). my dad said he will help us a bit and i'm sure we can get a bit of help from my in-laws. the only assistance we qualify for is the food bank, so i'm going down there this week to get us signed up.
i'm posting this here because it's more heavily trafficked than the lounge and i'm really at a loss right now. i've been fighting tears
i'm going to go hang out with a friend for a bit but will be back later to check on this. thanks in advance, duers, you guys are a good lot.
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and Seniors, fizz.
I hear you though. My husband is dying from liver failure.
We are currently on a transplant list but he is slowly dying. He only weighs 112 LBS and his over all health is teetering. He also has issues with all his meds and does not want to take what he needs. It's a constant issue and has come down to very loud and crappy conversations.
My only advice is to keep up with is meds and doctors appointments. Keep reminding him about life and love.
In our situation I remind him constantly that someone will have to die for him! The least he can do is take his fucking meds. It's been a nightmare! Atleast we are now #10 on the list here in Central Texas. Hopefully he will soon be transplanted.
You have my complete understanding and sympathy! 
Of course he resists. Its awful awful.
My sister is 6 years from her successful kidney liver transplant.
I am completely empathetic. BIG ((((hugs))). Good luck.
I'm familiar with it for elder care but I think they put people in touch with appropriate services and may be able to offer some guidance.
love and hugs
Some people, myself included, resent being sick. Feeling weak. Our own bodies have betrayed us in the worst way possible.
We get angry. Ugly angry. Unfortunately, we take it out on those we love. I am so sorry when I do it and I'm betting he is too.
Be good to yourself - so you can be more patient with him. Allow yourself the time to gather your own wits - take a walk, stretch, read - whatever it is that gives you peace.
Let him rant - to a degree. Let him know you understand he's angry and he has the right to vent - he just doesn't have the right to be angry with you. Also remind him that it isn't forever and he'll be back to his old self, more or less, in a very short time. It could have been worse.
I wish you both all the best!
Illness brings a whole new level to marriage. It can be very trying on everyone involved.
Time, patience, and love - with a lot of respect and all the reserves you have - is needed.
My best to you both!
feeling.
You remind me of your sister. I still remember her fondly.
yourself is to realize that when he is being difficult do not take it personally. Once you realize that he is being difficult because he is in pain, it will be sooooooo much easier to deal with.
The person I care for gets violent at times. When I don't handle it well is when I take it personally. But when I take a breath and realize this person is in pain, then I can run and get meds, whatever else I think she needs.
It's the hardest lesson to learn, but the most important one for both of you.
Next, if you feel like he needs to be seen by a doctor there are doctors that will come to your house. (Hoping you have insurance) Google, make some calls, tell people what you need and you will find that people are helpful (Nurses hotlines are great!). If they can't help you they may be able to refer you to someone that can.
If he's sleeping a lot, his body just may need the sleep. Be thankful - lol. When he's sleeping you can catch up on what you need to do around the house or even lay on the couch and watch a movie.
About eating - try Ensure or other meal replacements. If you have a blender, frozen fruit mixed with some oj and a handful of spinach makes a delicious smoothie... a tablespoon of honey makes it even better. It's cheaper to make smoothies than buy ensure. Frozen fruit makes it taste better than fresh fruit.
Remind him this is only temporary and one day you will look back at this as a bad memory.
Hope that helps!
who suggest BOTH of you need a bit more time to process this illness. Apparently your husband just got home from the hospital, so it's probably still a shock for him to deal with how sick he actually is. And for you, it must be a shock to realize how much unwelcome responsibility has been placed on you.
Having cared for both my folks for 5 years, what helped enormously was finding 3 or 4 people with ousized ears who could tolerate my feelings of resentment combined with guilt. Talking (and sometimes crying) with them really helped, even over the phone.
Sleep is a blessing...if your husband is sleeping a lot, our bodies don't lie. He needs it. As far as eating, no one usually starves to death by choice. Strongly agree with the suggestion to push soup because that may be all he can handle right now.
Definitely talk to the hospital social worker to take advantage of every service that's available to you. Does someone check in on him while you're at work? Maybe he'd be more apt to take advice/suggestions from health care providers.
Most important: understand that this too, shall pass. Your husband will gradually feel better and you will be able to resume your normal lives.
Please check in with us again. I feel optimistic you'll have progress to report.
I'm sorry I have no advice --- just a hug and a prayer 
A message to all who contributed: this the best of the DU community as I have always remembered it and how it should be. Remember this, and be kind to one another in the year ahead. I'll try to do that too.
Long time caregiver here. I've seen many family members so exhausted by their efforts to give loving care to a sick or elderly family member, that they literally end up dumping the ailing one at a long term care facility and fleeing, sometimes never to return! And the tragedy is, they will feel so bad about themselves later! They do not recognize the exhaustion that home care can inflict on the caregiver--the physical exhaustion, and mental and emotional exhaustion--combined with resentment and guilt that is buried too deep, that they can't allow themselves to recognize.
You need to take care of your own physical and mental/emotional needs. He is in no condition to take care of them for you. He's too sick. This is so-o-o-o important! Your mate cannot help you at this time. You've depended on him to be your friend and he CAN'T do that right now. He needs ALL his physical and mental/emotional strength to heal. So you need to get help from others! Let friends/family give you breaks and TAKE THOSE BREAKS. And feel good and righteous about it. "This is MY TIME," sort of thought.
I don't know about support groups (where you can vent, and get advice). Maybe you should go to a movie instead, or take a beautiful walk, or get your hair done, or take a friend out to dinner, and forget about your husband for two hours. A support group is just more him (focusing on him and his illness and/or what it's doing to you). You need to get away! Do something for you!
And he, of course, resents his illness, big time. I have to say that this is typical of men (as opposed to women patients). Resents his helplessness--really resents it, hates it! And he is obviously taking it out on you. This is no surprise to me at all. I see it (and experience it) often. But do know that it is NOT personal. He is just a "bad patient" (as old nurses used to say). He can't help himself--he is a man being pissed off at being sick. He will be himself again when he is not helpless any more. There isn't anything worse for some men than feeling helpless and dependent.
IN THE MEANTIME, find a mental image, say, of his anger flowing past you like a gentle, warm breeze (it barely touches you, barely influences you, and it's okay, it's just a natural phenomenon); do what you are able to do for him, physically and emotionally, and, when you need to, WALK AWAY: get out of the house, go to a gym, take a walk, visit somebody else, go to a movie, go buy a good used book, just don't stay there in a situation of mutual resentment and mutual exhaustion (him because he's sick and has no reserves, and you because you've had it with his resentment of his illness.
I have sort of a libertarian view of other peoples' bad attitude toward their meds or other doctor-ordered remedies (like oxygen). I use as many tricks as I can to get sick people to do what's best for them. But after a certain point, the human spirit must be respected. If they won't rally to their own continued existence, there is nothing that a nurse, caregiver or doctor can do. It's up to them.
Give your husband that freedom and that respect. Don't be snippy about it (like, "You want to die? Fine!", or "You want to get sick again? Fine with me!"
. Give him space to rally himself. He very likely will, on his own. But if he doesn't, you need to accept the fact that he doesn't want to do the things he needs to do to get well. You can give him this respect lovingly and while caring for him as well as you can. But you can't make him get better. He alone can do that.
I'd say, back off a bit. He's just out of the hospital, so you don't know how his illness and his attitude toward it are going to play out, long term. Give him a few weeks, at least, to gather his strength and his spirits. If he's obdurate about care, don't press him too hard. Just offer him what you think he needs, and if he turns it down, don't insist (or come back later, just once, and gently offer it again). He may have a relapse, but that may be what he needs to face up to his illness, himself.
And please, please know that this is too much for one person--you--to bear up under alone. You need help--practical, physical help--and the kind of help that will free you for rest and recreation.
Don't end up like the people I described above--totally exhausted, and in a totally fed up state that you yourself will some day regret.
just want to wish you well and hope you know that you can vent and look here for support.
You need to rest too or we can send Skittles over. 
