Does anyone caregiving feel so tired and feel like they have no life of their own?

One suggestion Karyll, try to make as safe and contained a place as possible for the elder to sleep. insist on a hospital bed with railings. The elder will object loudly, but be firm, don't give reasons, that just invites argument. Just smile and say, this is what's happening. Having the elder in a hospital bed is for YOU. It will save your back, and possibly give you a good night's sleep, as the elder will be in as safe a situation as possible.

If your sleep is being interrupted, consider asking for nighttime medication for the elder, so they can sleep through the night. You've GOT to keep your brain happy, and sleep is foundational to that.

Buy yourself some uninterrupted time. Routine is Key. Make a routine -- for example, something like -- every day at this time, put on a DVD of a favorite BBC Series the elder likes. Have the elder use headphones if the elder can do that. This gives you an hour or more of peace and quiet. 5pm-7pm is perfect for this, as it helps to get past that sundowners time.

Karyll, my best advice is to all caregivers. Consider yourself the Manager of Care. do your best to remove yourself from the physical hands-on side of care. Whatever you have to sell or do to raise money to pay people to help you, do it. I know you think you are saving money doing six loads of laundry a day (I did), and lifting, turning, bathing, diapering...(I did), but you are depleting your life energy and taking up ALL the time you could be appreciating the elder, interacting, talking with them. I know, there never seems to be enough money, or time. It's a train gathering momentum, and never lets up for a minute for you to catch your breath. I didn't have time to do any financial planning or strategize about what I could sell to afford housekeeping help to save my energy. But it is important for the elder's money to go for the elder's care. If you use your own money (and unpaid time and life energy) the elder's money goes for expensive gifts for the grandchildren or something...and you're left destitute at the end of it all. (Basically, I'm saying "whatever you do, don't do what I did!")

It is still hard being the Manager, as you have to be present and oversee the work, but at least you save your own physical energy and the elder gets used to having other people change their diaper and wash them. The manager is a more respected position. You finally have time to get on top of the paperwork, pay bills on time, and look like you have things under control. Siblings and agencies will respect you more. I found that nursing assistants in training, students, can be hired for about $12 an hour, and were frankly, better than the homecare agency staff. The student took direction from me better. The student was punctual, courteous, and stayed the whole time. Even after she changed, washed and dressed her, she would sit and hold her hand. The homecare agency would come whenever the heck they wanted to show up, bustle in for fifteen minutes and be gone.

I'm also struck by how non-caregivers do NOT understand the unrelenting stress and weight of the constant responsibility, the stress of keeping up with the constantly changing mental state and physical condition, sicknesses and health challenges of the elder. They say stupid unctuous things like "Why don't you just put her in a home? / or in hospice?" or "that's great she's on Hospice now, they'll take care of EVERYTHING..." or "you should get out more...don't forget to take care of YOURSELF..." they say, without offering to elder-sit for even a minute....

This thread brings to glaring light the gaping deficit of support for caregiving in our society. The burden is primarily on women (yes some men, too), and think of the lives, the talents, the contribution to the world that is lost to us, when women have to spend their strongest midlife years in eldercare for their aging parents -- with no pay, no support, little respect and profound misunderstanding by society, friends and siblings. Remember that it takes a village to raise a child? Well caring for an elder takes a village too, and should never be taken on by one person. But again and again, that's how it happens in our extremely individualistic and isolated society.

Killeen,

How much I feel for you! I was raised with a high sense of loyalty, respect..actually devotion to parents! As a daughter, saying anything that is contrary to what a mother says is a synonym of lack of love, lack of respect, it’s a crime really! All this is really related to my mother. My dad was an extremely good man..but too weak. I rarely felt supported by him all throughout life when it came to my mother’s behavior.

My mother suffers from the worst case of narcissism, to an exponential degree! And being sick and old...it’s a nightmare. TRULY a nightmare. I love her, I cannot quit caring for her (no one else would do it either), I’ll be here until I have to be. And of course I won’t ever mistreat her as she does me...that means I’m keeping a volcano of sadness and frustration inside, that I hope doesn’t implode, as that can literally kill me.

Last week for example, was her birthday. I called her few friends (all of them refuse to come visit her anymore. She’s been rude to them and mean too), I didn’t tell my mom that I called them and asked them to come. Told them that it’d mean a lot for my mom and for me. Two came, and my mom had a good birthday. I never told my mom I had called them, I want her to believe that they came because they wanted to, out of affection; that she’s important to them and people appreciate her. I also bought her a nice dress, put makeup on her..I know she likes to feel pretty and look elegant and not sick for once.

I made food, went out and bought a cake, cleaned the house, looked for music to play that I thought she’d enjoy, went to the local market before she woke up that day to buy beautiful roses for her...etc..etc.. I was exhausted after days of working and planning this, all, for my Mom, with true love.

Not a couple of days passed when she, who’s and has always been extremely intrusive, knows no boundaries, managed to get into a Facebook account where I have friends from work (back when I worked), and from the gym and when I took salsa classes, and also someone I dated...yes, I used to have a life!

She checked all my photos in that Facebook account, and never mind that most of my postings relate to her, pictures of her or family..she found some where she said I looked like a prostitute, just like that! where I was dancing with a man and sweating and enjoying myself..yes, I used to love dancing! It was my time not to think, my break! they had what’s called “socials” after the dance lessons so we could practice what we’d learned, and just have fun! I never dressed inappropriately, never even talked to the gentlemen that attended the classes! We just danced. Well, I tried to not make evident that the “prostitute” comment had bothered me to the extreme, OR WORSE , the fact that she used my password (probably was logged in with my IPad)..I’m sick and tired of having no privacy!! All my life! Since I was a child.

Not being enough, since then she’s been deeply upset, slamming doors, refusing to eat...not missing the opportunity to throw comments at me such as “ the life of a mother is so hard, one raises a child surrounded by love and they become worthless...”. Then she also got mad because I hired a woman to come help me clean once a week because the price is too high (I’ll pay her)..she also got mad because...etc, etc, etc..

Gosh, I’m so done. If I could at least go home (the US) to address several things pending I’ve there and TO REST from this madness!! But she cannot stay alone.

I don’t have kids. I wish I did but God knows why things are the way they are. But I cannot comprehend how a mother can find it so ok to hurt a child so deeply? Doesn’t she realize I literally moved sky and earth just a couple of days ago to give you a memorable birthday..and that every single day I devote my life to her and I do it with love, that I moved here and left all behind to care for her, never ever ever throwing to her face the truth of how mean she can be.

She still tells me that something really bad must have happened to me in the US, probably “that man I was dating”...who by the way she refused to even meet. He wanted to come to her home overseas to meet her since she refused to meet him while IN MY HOUSE in the US, she said she’d leave the next day if he ever came to visit”. Was he bad? No, not at all, he wasn’t the man of my dreams either, if so I’d have pushed to put the relationship over this madness, but he was a good person to me, he listened to all my hell with my mother while she was there and patiently gave me advice, always considering her wellbeing.

How can a mother be so oblivious to the damage she causes to her only child? Narcissism, I know. What a plague!!

Sorry this was long. I’m really so deeply tired.

As of you KKIllen, it’s your mother in law, you are an angel, seriously. Hope your husband sees it, values it and supports you in every way, because someone caring for our parent like you do, when the person is impossible! is a blessing beyond measure. Also hope if the time comes when he has to help you with your aging parents he steps up to the plate like a king! :)

Much love, light, endurance and wisdom to you..and a hug!!

OMG Rosses, This is my situation. Constant demands and I am the target. I am only the daughter-in-law. Her own kids can't handle a few hours and when they do they are mean to her. My problem is I'm to soft. I was raised to take care of our elderly. Not sure how much longer I can last though without going off the deep end.

After reading all the comments, I’d forgotten what the question was! This site has the ability to remind me that even if I feel my situation is the worst possible..it really isn’t.

My mom doesn’t need attention every second of the day..or does she? She thinks she does.

I have NO life. But the worst part is that even the mockery of life that I’ve fully given to caregiving is misery when my mom’s sharp cold blades of bitterness and “I am the center, I deserve every ounce of attention, I should be asked to respect no boundaries”..attack me (only child, I’m the target)...I feel miserable.

I truly TRULY try my best. It’s unfair to be disrespected and mistreated. But I’ve no way out.

The saddest part is that for us caregivers that literally have no life, the one piece of positive and encouraging response we may get from others is: “this won’t be forever, you’ll get your life back”.

Will I? I’m 45. And what type of life? Will I have health to live it? Will I have hope, joy, desire to live it? I pray I do! I pray we all do!

Luann, I'm so sorry you're going through this. I know with my situation, that at home there had been so much FOG (fear, obligation and guilt) that I couldn't see things clearly any more, and spent most of my time being hostile, anxious, exhausted and on edge toward him. Not in my behavior, but in my mind - to the point when I heard him on the baby monitor calling for me (and I would dutifully respond) I could feel my jaw hurt. Now, I'm so happy to see him, to be with him. My dad was a great dad, and this has allowed me to remember that. Sometimes, you become so committed to providing care at home, you lose sight of the bigger issue. Erinm60 - thanks for the kindness of caring, but don't worry. As I said, I'm not suicidal at all, but I will never put my family through the kind of experience I've had with my dad. I hope to live a long, wonderful life - experiencing kids getting married, having grandchildren, etc. All of that sounds wonderful. But I will not - if I have the knowledge and courage - put them through an end stage of life like I have seen.

Kkilleen, I hear you. Sometimes I wonder why I can't be one of the lucky 60% of caregivers that die early. But then I think, what about the dog? Who's going to take care of her? ;) I'm actually being serious.

Most days aren't that bad. It's routine now. But when Mom or Dad is in the hospital and grandma needs a diaper change and an otherwise absent sibling shows up during the crysis to ask how I could possible let things get so bad yet when asked to step up and help stays quiet only to lament later that there's no one to help me. Then I feel like I might just pop.

My mother has advanced dementia and it is heartbreaking to see her in so much pain. The mornings are the worst. She wakes up with so much pain and she hates to take her meds. So my brother and I must do our best to help her take her pain meds and her other meds are another thing. We get 6 hours/week help and it goes by fast. So after she finally takes her pain meds we let her rest about an hr. for them to start working. The rest of the day is tiring and sad. She has always been the best mom and always there for us. Have I thought about putting her in a home? Yes and when I tell her she says she doesn't want to go. I have heard horror stories about those places!! When she was well she told me she would rather be dead than be in one of those places. So how could I do such a thing?? I get tired and depressed but I guess it won't be forever. Trying to do my best but not easy!!

Luann, how awful! I am so sorry you are going through this. And I'm sure your poor husband would feel the same way if he was able to. I think you should explore finding a place where he can be cared for, along with your continuing assistance and love, without the huge hit to your own well being and health by having the entire burden on your shoulders without any relief.

Caregiving......I feel the same as you do. Those of you who say you go out when you want to have a day or a few hours with your friends....good for you, but what if you couldn't. What if your loved one needed you there every minute, that you couldn't trust them to be alone. There are some of us who can't afford to have anyone come in or have any family members that can take your place for a few hours......what would you do then???? My husband has Lewy Body Dementia, his memory is going fast. Every night I have to go through the same thing with him, when are we going home, I don't like this place, lets go home and when you tell them we are home, rage and anger sets in and he yells that I am trying to confuse him and stop telling him that we are already home when he knows different. I take him from room to room, showing him things that we have bought together and then I take him to his bedroom and there he is satisfied.........for a while. The sleepless nights, the waking every fifteen minutes for unimportant reasons, to me, but not him, yelling to see if I answer, because he thinks I have left him alone, etc, etc, etc..........how do you know if you should start the next step, by putting him in a Memory Care Home.........what, just what is right............................?????

I don't feel I have no life - I know I have no life! What we do for our loved ones is physically and emotionally draining...but we do it out of love. :-)

Hi tired only child. I’m an only as well. My dad died about 30 years ago at 54 from a heart attack. I would much prefer his sudden unexpected death to my mom’s dementia.  I wouldn’t wish dementia on any one.  How ever,   I never want to not see my 22 year old get married  And or have kids.  I want to enjoy decorating again,  I want to enjoy my life again.   I realize my mother nor I wanted dementia in our lives ,  but it is. But no ,   No way am I going to end my life    I want to change it.  Yes.  End it. No. I’m not trying to preach. But anyone who really wants to kill them selves,  please seek help.  Not saying you are / were,  but I worked in psych for years.  And caregiving is excruciatingly hard.  

Kkilleen and Erinm60 -- feel the same way. As a matter of fact, I have planned and planned and planned for my death - not in terms of immediate suicide, but because I do NOT want to go through any of this - and certainly don't want my kids to go through this when that time comes. Of course, I will be hit by a bus. This year, I decided I cannot keep living this way in purgatory - wishing I was constantly free, but constantly worried about my dad's care. It started by placing Dad in a memory care unit the first week of December (which ahem, might not have been as good as they sold it to be) But even so, it's given me a break. I swear, if I had not moved him out, they would have buried me by now. But now, I've taken a vacation with my three kids, I've started WW and counseling again. It doesn't mean things are just peachy, but I do feel like I can breathe - for the first time, in literally months, maybe years. My mother had a massive stroke at 55 - and stayed in a wheelchair until she died of breast cancer at 72. I'm 54 and in far worse shape than she was. I'm going to try to dodge death - I would like to beat the 40 percent caretaker death sentence.

Kkilen, So do I sometimes. Then I realize no. No way. I have I hope 25 good years left. Maybe 20. I’m almost 57. So maybe 20. But when I look out the kitchen window, and she’s sitting there with Fox News and I feel trapped, I fight the wishing I was dead thought. This too shall pass. As Gloria Gaynor or Donna Summers said years ago, “ I will survive “.

I wish I had an answer. I wish I was dead about 20 times a day.

*raises hand* Since I don't feel comfortable leaving Mom alone any more, I'm pretty much trapped here unless my siblings or niece come by. But then I'm too tired to go anywhere other than chores that I need to do. Of course, when it warms up a bit I might feel like going for a drive. Usually, I just go to my room and nap or read for longer than ten minutes without interruption.

I agree, Being couped up in the house is very difficult sometimes. I enjoy going out as well. Even errands is enjoyable because I'm out somewhere.

OMG, Karyll, I just discovered this site and it feels like a lifeline. I create a life of my own by going out with friends a few times a week. But knowing I will come home to my husband is always with me. Caring for him 24 hours a day, being couped up for so long is hell.

I do feel a little overwhelmed sometimes, but, I'm working on finding some solutions. Things have a way of falling on your plate if you allow it. I have to maintain my boundaries and not take on everything. I'm taking time to carve out my own special times, friends and activities.

I wish my mom would get up and watch TV. she just turn 70 years old and this is a constant struggle. 24/7, feel drain. No one wants to make decisions. This is my day from morning to night. cleaning, changing bed every day. washing clothes, cooking etc. she wakes me up at all times like 12am, 2am , 0300. I feel like to pack up my bag and go. i had a normal life before all this.. single no kids now i have a sick kid who does not want to get better.

I can't imagine doing all that some people do and not feeling tired and burnt out all the time.

I think those of us 24/7 feel that way. My mother has dementia. Not Alzheimer’s as far as I know. Asked her doc specifically , is it Alzheimer’s. ? Response. “ I don’t know”. So I’ve done a ton of reading. I don’t think Alzheimer’s. To make my life and my husbands and 22 year old daughter ‘s better, I had a “ needs assessment “ done. We go away. Even over night . I get help from the place where she will eventually live. I get nursing aides at the house 2 hours a day , when we go away. It helps tremendously. My mom is 80. Still has ADLS. Short term memory gone , but worked from 14 to 78 years old. She wants / chooses to sit in front of the TV all day watching Fox News. Her choice. I am giving up on guilt on that. Just because I would go crazy watching TV all day, doesn’t mean an 80 year old who is content doing so , will. She’s happy. Get as much help as you can. And for me letting go of my unrealistic expectations of what I think she should/ could be doing is the main goal I have.