I’ve been caring for my husband since 2003 when he had a stroke, and full-time after he became bedridden in 2013. I do everything for him but feed him. We have many bills, no money and both my health insurance and his Part D Medicare have lapsed due to not being able to afford it. At the age of 65, I am going back to work to pay our bills and keep our home. We have no luck other than bad luck.
I can become mean, sarcastic and downright nasty with my husband. Every issue we’ve ever had over 44 years comes boiling to the surface. If he asks me for something and I don’t jump up immediately to wait on him, he will obsess for hours.
So, yeah, you’re not alone. It’s part of the whole caregiving experience, unfortunately. I feel awful after I let him have it, especially when I think of the alternative. It sounds trite, but we need to find peace for ourselves, whether it’s relying on our faith, family or friends, the local coffee shop, enlisting home healthcare workers, whatever works. We know what works for us, so that’s what we have to do. No one can judge us if our peace is watching Flintstones cartoons. Whatever it takes, you know?
Yes . Whatever it takes . It is definitely an individual thing . Thanks for that statement . With everything I’m learning about caregiving I’m also learning to develop a thicker skin . I have always tried to give the benefit of the doubt and not to judge anyone as I am not wearing the exact shoes they are . Now I’m starting to expect the same in return .
sounds so familiar...since 2006 making decisions alone while my husband asks. "What's for dinner?" I take breaks by playing solitaire on the computer . You are not alone, even tho it can be lonely. (((hugs)))
I'm right there with you. Caring for my dad I have become angry and mean at what ever he says. Last night it was something he said about going to to my siblings and have some relatives drive 5 hours to take him to the annual hunting camp. Already he is being taken care of to travel by air to my siblings and happy to let others drive 5 hours to pick him up. I said something flipient and left the dinner table. Of cousre it caused a discussion with my wife later. We are fine but I am boiling. I am not sure why I have become more and more angry. Something has been bugging me and I am not sure what it is. I want to be able to be nicer and dont know how.
What's bugging you is that the issues of caring for your dad, whatever they are, are unrelenting. There is no respite. There are no solutions. There is nothing you can do. That's the thing that drives me crazy. We can only do what we can do. And we have to remember to save ourselves in the process. That would make anyone howl once in awhile.
I felt the same today. It was early in the morning, a little past dawn. I stepped outside and walked on the dewy grass with my bare feet and soaked up the chilly morning air. I felt much better after that.
Oh, boy, do I ever relate to this. I live with my 87 YO mother who has dementia. She has an incredibly complex delusion going. She see things "written" all over everything, and it's all bad. I do my best to reassure her and not argue, but sometimes she goes so far out there, accusing me of all kinds of things, that I just lose it. If there is a person out there who has lived through this without losing their sh*t once in awhile, I will gladly nominate them for sainthood. The rest of us just have to deal the best way we can. I play bubble pop games (Cookie Cats Pop is my favorite) and knit.
My Mom only went "out there" a few times. When she did, I called my daughter, an RN working in NHs for 20 yrs, and she came and calmed Mom down. I didn't deal well as a caregiver. Maybe because I went right from watching Gson 5 days a week into 24/7 with Mom. When DH was home I could run some errands but there were things he just couldn't do for Mom. Mom was pretty good with the aides that bathed her. Daycare she wasn't thrilled about but she went 3x a week. So sorry Mom has isolated herself. You couldn't try a Daycare? Maybe staying with her the first few days till she gets used to the routine. Then start leaving like for an hour, then two, etc. This would give u some time to yourself.
I think that if there is someone on this site, or any caregiver for that matter, that does not say or feel the same way at some point they are lying. Being a caregiver is overwhelming at times. Not just physically but mentally and emotionally. In order to keep things on an even keel we have to take care of ourselves. And while it may seem selfish we sometimes have to put ourselves first. Do you have help? If not it might be time to look into getting some. Paid or a volunteer it does not matter as long as you get a break. Are there friends or family that ask..."what can I do?" if so start making a list. When someone asks say...Ya know I need a few things from the store next time you go shopping can you get me a bag of onions some carrots...The next person asks say..ya know I have not had a good chat for a while would you want to stop by for a cup of coffee so we can catch up....and so on. "We" don't like to ask for help but often we are the first to offer because it makes us feel good to help someone. Give that feeling to someone else. So when someone asks if they can help they WANT to help they just don't know what you need. Another way to ask for help is call one of your husbands friends and say...I know you have been busy but "steve" would love a visit, I know you two go on and on about the..whatever sport team he likes... would you mind sitting with him for an hour or so on Saturday? I have an appointment and "steve" would love a visit and to be able to see someone else other than me for a little while.
And you need to search for other means of help. Are there children in the picture that are near that you can get to help you out? Is your husband a Veteran? the VA can help and depending on when he served there is a possibility that you and he may be able to get a lot more help. (there are certain conditions that can be considered a "service connected disability" and this can increase the amount of help you can get)
You also should look for a Support Group so you can talk to real people, get their input and find out what has worked for them, what kind of help they get. And it does help to vent. One other thing..is YOUR doctor aware of what is going on in your life? Stress can cause all sorts of problems. And there is nothing wrong with asking to be referred to a therapist so you can safely talk about what is going on. (this does not necessarily mean you need medication to help but do not rule it out) Be well, take care of you and know that you are not alone in your feelings and they are normal.
These are all great ideas, but there is a reality for some of us that is rarely acknowledged on this board. For some of us, there is no help, or very little. I live with my mom (thank God, I'm retired). I have one sister who has a demanding job and her own family obligations She comes to visit mom twice a week for a few hours in the afternoon, so I have that. I have no other family members. My mother's entire life revolved around my father, who passed away in December. She has no friends. She reacts VERY badly to change of any kind, so bringing a stranger into the house is out of the question. Taking her to an adult day care enter would flip her into next year. I can't get away long enough to attend support groups, which usually meet in the morning. People like me have to find ways to stay sane on our own. I know your suggestions are given with great caring and concern, but I'd like to see some ideas on how to cope when you're going it alone.
I’d be lying if I said I never lose it with my dad who has dementia. It’s not something I’m proud of and after I’ve yelled at him I always immediately apologize and give him a hug. Do I feel bad about it? Of course, but we are all human with all the feelings that make us human. Don’t beat yourself up for those feelings of frustration, forgive yourself. Try to get time for yourself where you are away from him and are only doing for you. Love yourself, you are doing a difficult job that not everyone can or would do.
Oh my dear, I am so very sorry for what you are going through. Please try to allow yourself to be human. The feelings of anger, frustration, resentment, etc. are all completely normal reactions to a completely abnormal set of circumstances. My deepest wish for you is that you can focus on being proud of yourself for the love you continue to show and give, and find a way to accept your other feelings without chiding yourself and adding shame to the mix.
I would encourage you to reach out to your area agency on aging for assistance such as respite care. The more you can do to treat yourself well, the more you will have for making it through the more difficult times. In the meantime, you can always find loving support here. Bless you.
Debbye I really related to your post about coping on your own not being addressed on this board . Or should I say addressed compassionately.My first question on this site was about handling my husbands refusing help in the house . That was met with one answer that said I was in denial about his condition . If the responder knew me she’d know I’ve never been in denial about anything . I haven’t posted since and perhaps I was wrong to be scared away. I have found ways since to “self-care “ and don’t beat myself up for the resentment and frustration that I sometimes feel but accept it as I am only human . I have also learned to be honest with my children so they have really stepped up . Yes my not leaving him with a stranger is my decision as going out and leaving him in an agitated state does no good for either of us . My body would be out and about but my mind would be with him . I may not have asked to be a caregiver but he sure didn’t ask for this disease . Each of us is different and cope in different ways but we have to do for ourselves and our loved one what we are able to live with .
I know people on this board mean well, and most offer suggestions to be helpful. A few come off as judgmental, though. Those are the ones I ignore. The vast majority are truly trying to help. It's just that I have read about 1000 suggestions to get outside help, make your relatives step up, and take your LO to adult day care or put them in a facility. While well-meaning, these suggestions are not helpful for me. I think those of us who are going this alone need to speak up more and at least let each know we're not alone.
#1. Never be ashamed of needing a break. #2. Wanting to yell is not the same thing as yelling. #3. Go give your husband a good long hug! A very very long face-to-face hug! Tell him how you feel. If you've been wanting to yell at him, then he knows from your actions. Talk with him. There could be a solution you haven't thought of.
Hang in there and never be ashamed of your feelings.
Workmom, first, you aren't going to win the "most unusual problem" award. As others have said, the I-lost-my-temper-and-now-I'm regretting-it syndrome is nearly universal within the caregiving community.
I cared for my husband who had dementia and other health issues for ten years. Looking back, I am really proud of how much my patience improved over those years. I did a good job!
BUT, in spite of being a good caregiver, I developed this little speech which I used more than once. (It is not copyrighted!)
"Oh honey. I am so sorry I sounded so angry with you. I know that that issue was not your fault. I was angry but not really at you. I am very angry at Lewy! Lewy is my enemy, and yours too! I hope that Lewy will be a little less difficult tomorrow, for both of us. Can you forgive me?" (Hold arms out for hug.)
My circumstances: * Husband had Lewy Body Dementia * Husband very aware of his diagnosis. * We referred to the disease as "Lewy" and Lewy was definitely the bad guy. * Lewy is a VERY variable (up and down) disease, and it is reasonable to hope for a "bad" time to be followed by a "better" time * Husband had plenty of lucid periods when he could engage in logical conversations.
Anyone wanting to try out this little speech will need to customize it to their circumstances! Basically it is 1) admit you were mad, 2) acknowledge that your anger was misdirected 3) offer assurance of continued love/care 4) ask for forgiveness.
I'd love to hear if anybody tries this, and how it goes. see less
No one is going to give you any sure fire answers as to how to cope with all of this. All we can do is tell you how and what we are doing. I have 24/7 care of my husband who is in the 5th stage of Alzheimer's, there are never any breaks, never any hours away from him. I have yelled at him, threatened to leave him alone, stopped talking to him, ect. and you know what? 5 minutes after I have said something I've been sorry for, he has forgotten it all and it is a completely new day, for him that is. Meanwhile, I am beating myself up for being so hateful, feeling worse than I did before I got so angry, and wondering just when I lost my compassion. I have been going through this for many years, and now, when my husband is declining faster, the strange thing is, I am developing more patience, and I have found my compassion, it was hiding right behind my temper! So maybe the answer for me is just to get through today. Not to expect anything, just cope with each crazy thing as it happens. My husband is only going to get worse, and to survive I have to get better. Remember, as sad as it is to say, nothing is going to last forever. In the meantime, we are here for you. As much as it seems otherwise, you are not alone.
Your words were so incouraging. I find myself in the same situation. It is so hard at times and knowing that it will only gets worse. To lose someone little by little that you love dearly is heartbreaking. Thanks again. Roglin
@ debbye - I get it! My mom living with me is very difficult. When I need time out, I put my earphones in and listen/watch Netflix and some of the youtube sound videos ... crickets at night, ocean waves, thunderstorms ...
So I wallow in my putty all day, I wallow in how I feel bad talking bad to my father. I was nice all day. checking on his health and meds. I make dinner, a nice low fat fish dinner, then near the end how some of the relatives are going to drive 5 hours one way to pick him up to take him to camp... of course I lost my appetite. I just cant do it. He is all about him and no one else! I know, let it go but I cant. I am too much like my mother....
As others have said, it's normal to lose it at times. Trying to think of something unique to say to this is hard.
Just keep in mind, that you are only human. To err is human right? To forgive is divine. So forgive yourself for being human. It's okay to not be perfect. Anyone under a lot of stress has their moments. I find when I'm frustrated (about anything) what helps me is to get outside and get some fresh air. Even if it's only for 10, 15 minutes. It changes your perspective.
THE MOST IMPORTANT PERSON TO TAKE CARE OF IS YOU! IF YOU DON'T, THAN IT IS ALMOST IMPOSSIBLE TO TAKE CARE OF ANYONE ELSE. YOU MIGHT SEE A COUNSELOR TO HAVE SOMEONE WHO WILL AT LEAST BE AN UNBIASED EAR TO LISTEN. CONTACT YOUR LOCAL/STATE AGING RESOURCE FOR SOME HELP IN MOVING AHEAD. MAYBE THERE ARE PEOPLE -RELATIVES OR FRIENDS- WHO CAN SPEND TIME GIVING YOU AN OPPORTUNITY TO TAKE CARE OF YOURSELF EVEN IF ONLY TO TAKE A WALK OR GO TO A STORE.
For how long have you been taking care of your husband?
Dont feel ashamed. Work on getting to know yourself well enough to be able to tell when it is time for a break, to breathe! (even if it is just going to another room to be by yourself or to do something not husband related) before you reach your boiling point.
Also, reassess your situation. Determine if there is any thing that could be changed to make this journey more manageable. Can you count on someone else to come help you a day or two per week for some hours? Can you change your and your husband’s routine to make it more structured and easier for you to handle?
In other words, take an step back and look at the situation objectively, as if you were a third person. What can you improve? And before you are tempted to say: Nothing! I’m doing my best! - think twice- there’s always room for changes, even small changes can make a significant difference.
The most important part though is to get a good handle of the guilt/shame you’re starting to grow inside. Not only is it unfounded, but it limits your ability to manage the situation efficiently and at the same time lovingly. It takes away your control, sabotages your self confidence and diminishes your survival abilities...because caregiving in many ways implies survival, i.e. preserve your life, Your mental and emotional health, and you need those to be the best caregiver possible for your husband! And remember to still look at him as your husband, not only someone that needs your care, that is critical so the weight of the caregiving path is manageable for you.
Is any of this helping you? There are a lot of us out here if you need help, hope, or just want to vent. Let us know if we can give you the value of our experiences. We've been through it all! You are not alone.
I can become mean, sarcastic and downright nasty with my husband. Every issue we’ve ever had over 44 years comes boiling to the surface. If he asks me for something and I don’t jump up immediately to wait on him, he will obsess for hours.
So, yeah, you’re not alone. It’s part of the whole caregiving experience, unfortunately. I feel awful after I let him have it, especially when I think of the alternative. It sounds trite, but we need to find peace for ourselves, whether it’s relying on our faith, family or friends, the local coffee shop, enlisting home healthcare workers, whatever works. We know what works for us, so that’s what we have to do. No one can judge us if our peace is watching Flintstones cartoons. Whatever it takes, you know?
Being a caregiver is overwhelming at times. Not just physically but mentally and emotionally. In order to keep things on an even keel we have to take care of ourselves. And while it may seem selfish we sometimes have to put ourselves first.
Do you have help? If not it might be time to look into getting some. Paid or a volunteer it does not matter as long as you get a break.
Are there friends or family that ask..."what can I do?" if so start making a list. When someone asks say...Ya know I need a few things from the store next time you go shopping can you get me a bag of onions some carrots...The next person asks say..ya know I have not had a good chat for a while would you want to stop by for a cup of coffee so we can catch up....and so on. "We" don't like to ask for help but often we are the first to offer because it makes us feel good to help someone. Give that feeling to someone else. So when someone asks if they can help they WANT to help they just don't know what you need. Another way to ask for help is call one of your husbands friends and say...I know you have been busy but "steve" would love a visit, I know you two go on and on about the..whatever sport team he likes... would you mind sitting with him for an hour or so on Saturday? I have an appointment and "steve" would love a visit and to be able to see someone else other than me for a little while.
And you need to search for other means of help.
Are there children in the picture that are near that you can get to help you out?
Is your husband a Veteran? the VA can help and depending on when he served there is a possibility that you and he may be able to get a lot more help. (there are certain conditions that can be considered a "service connected disability" and this can increase the amount of help you can get)
You also should look for a Support Group so you can talk to real people, get their input and find out what has worked for them, what kind of help they get. And it does help to vent.
One other thing..is YOUR doctor aware of what is going on in your life? Stress can cause all sorts of problems. And there is nothing wrong with asking to be referred to a therapist so you can safely talk about what is going on. (this does not necessarily mean you need medication to help but do not rule it out)
Be well, take care of you and know that you are not alone in your feelings and they are normal.
I would encourage you to reach out to your area agency on aging for assistance such as respite care. The more you can do to treat yourself well, the more you will have for making it through the more difficult times. In the meantime, you can always find loving support here. Bless you.
#2. Wanting to yell is not the same thing as yelling.
#3. Go give your husband a good long hug! A very very long face-to-face hug! Tell him how you feel. If you've been wanting to yell at him, then he knows from your actions. Talk with him. There could be a solution you haven't thought of.
Hang in there and never be ashamed of your feelings.
I cared for my husband who had dementia and other health issues for ten years. Looking back, I am really proud of how much my patience improved over those years. I did a good job!
BUT, in spite of being a good caregiver, I developed this little speech which I used more than once. (It is not copyrighted!)
"Oh honey. I am so sorry I sounded so angry with you. I know that that issue was not your fault. I was angry but not really at you. I am very angry at Lewy! Lewy is my enemy, and yours too! I hope that Lewy will be a little less difficult tomorrow, for both of us. Can you forgive me?" (Hold arms out for hug.)
My circumstances:
* Husband had Lewy Body Dementia
* Husband very aware of his diagnosis.
* We referred to the disease as "Lewy" and Lewy was definitely the bad guy.
* Lewy is a VERY variable (up and down) disease, and it is reasonable to hope for a "bad" time to be followed by a "better" time
* Husband had plenty of lucid periods when he could engage in logical conversations.
Anyone wanting to try out this little speech will need to customize it to their circumstances! Basically it is 1) admit you were mad, 2) acknowledge that your anger was misdirected 3) offer assurance of continued love/care 4) ask for forgiveness.
I'd love to hear if anybody tries this, and how it goes. see less
Just keep in mind, that you are only human. To err is human right? To forgive is divine. So forgive yourself for being human. It's okay to not be perfect. Anyone under a lot of stress has their moments. I find when I'm frustrated (about anything) what helps me is to get outside and get some fresh air. Even if it's only for 10, 15 minutes. It changes your perspective.
Dont feel ashamed. Work on getting to know yourself well enough to be able to tell when it is time for a break, to breathe! (even if it is just going to another room to be by yourself or to do something not husband related) before you reach your boiling point.
Also, reassess your situation. Determine if there is any thing that could be changed to make this journey more manageable. Can you count on someone else to come help you a day or two per week for some hours? Can you change your and your husband’s routine to make it more structured and easier for you to handle?
In other words, take an step back and look at the situation objectively, as if you were a third person. What can you improve? And before you are tempted to say: Nothing! I’m doing my best! - think twice- there’s always room for changes, even small changes can make a significant difference.
The most important part though is to get a good handle of the guilt/shame you’re starting to grow inside. Not only is it unfounded, but it limits your ability to manage the situation efficiently and at the same time lovingly. It takes away your control, sabotages your self confidence and diminishes your survival abilities...because caregiving in many ways implies survival, i.e. preserve your life, Your mental and emotional health, and you need those to be the best caregiver possible for your husband! And remember to still look at him as your husband, not only someone that needs your care, that is critical so the weight of the caregiving path is manageable for you.
May God bless you, strengthen you and guide you!