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When do you throw in the towel?
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At what point do you finally throw in the towel; throw up your hands in defeat; say enough is enough; admit you can no longer handle the stress of caregiving?
When you promise your spouse that you will not place them in a nursing home until you cannot “physically” do what is necessary to take care of them….what happens when you mentally have to admit that you just don’t believe you can do it any longer? Do you just suck it up and continue? Do you cave and admit that the nursing home is best for both of you in the long run? How do you deal with the guilt of calling it quits? How do you deal with the guilt that your spouse tosses at you in your nursing home decision? How can you convince your spouse that the decision you are making is best for both of you in the long run, even as the daggers of hatred emanate from their eyes? The decision hasn’t been made yet, but I am leaning toward that need. My wife has become so self centered, demanding, selfish, and uncaring toward me, that I have a very difficult time in dealing with her needs. I realize that her dementia has a great deal to do with her attitude, but when my nightly sleep is so interrupted that it’s almost like torture, I feel I have to draw the line. Over the past several months, she awakes about 3am and wakes me to get her up so that she can sit in her lounge chair and watch tv. About 5am she wakes me again so that she can go back to bed…..two hours later she wants back up, along with a bite to eat….and then once again around 9am, wants to go back to bed. Each time she wakes me….I’m up for about 15 min….and then go back to bed…but it takes me 40-50 min. to fall back to sleep….so maybe an hour of sleep with each wakening. Though I constantly tell her how this just destroys my sleep, even blow up and scream at her about her inconsideration, she still doesn’t get it. Her attitude is “what the hell are you so upset about, you’re going right back to bed”. And even though I am a 24/7 caregiver and taking care of all her needs , she still displays the idea that I really don’t do anything during the day. Financially, the cost of a nursing home locally is very expensive, but do able for us for up to 3 yrs……after that, we are then pushing the limits. But again, I know that my wife doesn’t want to go to the nursing home, and I sure don’t blame her, but for me it’s becoming more a necessity as I evaluate it. Any suggestions/comments definitely welcomed. If you wish, leave me a message rather than a post here. Posted on 08/31/11, 02:20 am |
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Since I've become a caregiver I've told my husband that if anything happens to me to: 1. pull the plug, or if that isn't legal 2. put me in a home. I don't like option #2, but the last thing I want to do is make some other poor soul take on the life of a caregiver.
I am so sorry to hear what you're going through. I don't know if you've already considered this, but what about bringing someone in to work the night shift so you can get some uninterrupted sleep. If your wife doesn't like it, give her the choice...hired help or nursing home. Situations like this make you realize that we (society) really need to find a better solution to dealing with our aging population. 
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wtd13 is so right. I, too, am a caregiver, but of one who does not remember his bouts of dementia, the institutionalization, the lengths I went to so he wouldn't be permanently put there. So far, I have been able to shrug off his behavior but it sure gets my goat! I know he fears what happened to both his mom and dad, they were in nursing homes, too, and were aware of it for some time. I, like you, will persevere until I cannot deal witih it anymore and am forced to give him a choice: homecare or nursing home. Take care of yourself in order to be there for her.
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Caring1, I am so sorry to hear of your troubles. You have been caregiving so long, you are such a role model to (I'm sure) all of us here! Throwing in the towel is a big decision and certainly not one to be made when you are bone weary from not enough sleep. Have you/can you consider the following before you throw in the towel:
For you: 1) a bedroom of your own 2) a closed door 3) ear plugs For her: 1) a hospital bed with multiple positions 2) TV with remote facing the bed 3) sleeping pills Everything seems worse when you are not getting enough sleep. Believe me, I know it! Hang in there. Molly
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What was said is probably better than the advice I can cook up, but there is a big difference between giving up and doing what is best not only for her, but for you as well.
You told in my thread that it isn't altogether selfish to do what is best for you because taking care of yourself can make you a better caregiver, even if the person receiving the care doesn't understand that. Hugs have been sent your way.
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I'm not sure i can really "add" anything to this conversation as you've been given some very nice options that really might work. When I first brought my son home I did not get more than 2 hours of sleep at a time and it was brutal. You have to remember that if you are run down she cannot get the best care either...the two are inseperable. I hope you can work it out so that you both can be cared for. And it's not "giving up" it is about deciding what is best.
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Caring,
It's a shame how nursing homes have gotten such a bad rap, there are very good ones out there. I had to place mom in a nursing home and it's the absolute best, the staff is friendly, she is well taken care of (much better than I could ever do), the food is good (had lunch there serveral times) and the place is decorated in a bright and cheerful manner. The place is open 24/7 so friends and family are encourages to come and go as they please. The monthly cost for her $1,600. all inclusive. Now mind you I live in Canada and it could be very different in the states, I don't know. I get the feeling that if you still have to ask yourself the question of what you should do, it's because you're not ready yet to stop doing what you are. When the time comes, you will just know what needs to be done and like Mac.. says, you would be doint what is right for your wife and for you and not 'giving up'. Good luck in your decision making process. Hugs
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I wish to thank all of you for your replies and timely advice. I have to admit that at the time I posted the question, I had had a particularly rough couple of days dealing with my wife. As I have been doing, I will continue the difficult job of caregiving for my wife, and taking as much respite time as I can as it's available. Though the nearby nursing home is rated in the top 5 in the state and the cost is "reasonable", I still look at it as the last resort. Again, thank you and hugs to all of you. I'm sure there'll be times I'll need to vent again.
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Hi Caring
Just to add. I threw in the towel. After 8 years of caring for my mom with MS I was 'broken' mentally, emotionally. Physically I had reached caregiver burnout and stormed right out the other side. I was also struggling with depression, serious back problems and a host of other things like constant infections. So my immune system seemed to be completely shot. The decision to put my mother in frailcare was VERY difficult and my mother took it extremely badly. She will probably never forgive me. (add to that the fact our relantionship had gone completely down the toilet anyway with her almost childish extreme dependance) there was no "we're a team", it was simply, "you give, "I take" kind of story. How I reached the decision...will sending myself straight to hospital help my mother in any way? Nope. Will throwing myself off the nearest bridge help my mother or me.. Nope. So I did what was best for both of us, so we can both survive and perhaps even be a bit happy. With all that said I still support my mother financially - and I mean everything. she has virtually no income and I'm surety for every single thing she needs.
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Hi Caring,
My heart goes out to you in your struggle to try and "do the right things." I struggle often too with trying to figure out what is the right thing to do. I've heard it often said that we can be no good to others if we do not take care of ourselves (it's a lesson I find I need to remind myself of often as well). With that in mind, giving your mind and body time for rest is very important for your ability to continue being the caregiver that you are. I wonder if you have considered someone coming to your home? I found a website with some information that I don't know if you've seen already or might be of some help to you? If you have the financial means to afford a home even if for just a few years, you might be able to afford in-home regular visits. The visits would free you and give you the respite time your mind and body needs. http://www.state.il.us/aging/1athome/athome-main.htm Also, agreeing with another's post here, setting up a room of your own, repositioning furniture and so on. Your wife will probably react negatively at first to change. If we can manage it, set our feet upon the path and move forward one step at a time to a better situation both for yourself and ultimately for her. I'm sending prayers for Blessings your way. 'An it harm none, Blessed Be. Toni~AyniaNightFish....
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Sadly, there will come a time when your wife will not know you, so will settle better in a nursing home. I know that there comes a time when you just CANNOT, with the best will in the world carry on. At that point you will have to decide where she will get the best treatment. In the homes, the staff do not have to cope 24/7 you do. You look at your wife and feel that you do not know her anymore - you have lost your lover and companion. That is of course, the dementia. I feel for you so much because I have walked your path. While you are still deciding, try to get in some home cooked meals, and maybe consider putting her in the home for a few weekend respites, so that you can recharge. I would hesitate to put earplugs in my ears and take sleeping pills, you know how easily they fall. Even when you do sleep, half an ear is always open. I am so with you both, and your pain washes over me as if it were my own. For a while, it was. I had to start to mourn before her death. Get a trained nurse to show you how to handle some of the nursing chores more easily, and take particular care to avoid bed sores. My love and very real prayers are with you. BARB xxxxxxxxxxx P.S. Getting a hospital bed in is a good idea, it is too difficult to bend over a normal bed, also the cot sides help to keep her safe. If I can help you at all, I am just a mouse click away
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