How do you maintain any kind of life of your own while caring for a parent?

It's great that you want to take care of you mom at home. But she has lived her life and you have put yours on hold. It may be a fork in the road for you. She'll never get better care than from those who love her, but it may be time to get help. I'm still caregiving so I know what it's like. You have a right to your life too. See if you can find a balance with asking for help from your relatives. (Any and all of them, people from church, Alzheimer's association and office of the aging to name a few) Even one or two days a week off will give you what you really need. (YOU NEED IT) xo

Hang in there, ABCowgirl. Being a family caregiver is a rewarding and sometimes overwhelming responsibility and it is completely normal and expected to feel the way you do. My family and I spent many years caring for my grandmother and mother, who both suffered multiple strokes, and my father, who was diagnosed with cancer and passed away soon after. Those were some of the hardest years, both physically and emotionally, yet some of the most rewarding years of my life. I can remember having the same feelings you’re experiencing right now. It’s a positive thing that you recognize that you feel this way and aren't bottling it up inside. Remember that you are doing a very tough job and that it is okay to feel this way. You need to take care of yourself too, and should ask for help. I was fortunate to have a supportive immediate and extended family as well as outside help from hired caregivers during those years. Home Helpers can make it bit easier for you. Like Eyerishlass says, every caregiver deserves a break and a healthy support system.

NEVER FEEL GUILTY FOR PUTTING YOURSELF FIRST! You are not required to provide that care for your parent and you shouldn't feel obligated to do so.

First I would have a meeting with the siblings that said they would help and work out some type of agreement basically where everyone has a turn with her for the weekend. During the week there is Adult Day Care available for most areas. My MIL goes 3 days a week and I have to say that is the best decision I have ever made. She goes from 9 am - 6pm M,W,F and it gives me those days to do the things I want to do and need to do. We also have at home care available (you just have to set it up) Think babysitting service for the elderly. It can be a nurse to care for your mom or just a general care giver. There are lots of those types of services out there and many are paid for by med insurance. Call a local nursing home and see if they can refer some companies. There is 24/7 care also out there as well that will come for a night or a week if you want. Yes you have to pay for these services but some are covered by insurance. There is a group I found out through our Adult day care that has grant monies just for things like this and this year I got $1300 to help pay for the day care.

at 28 you shouldn't feel one bit guilty for wanting to have a life. If you decided that you just couldn't do this anymore which sibling would take over? If none then consider that maybe placing mom in a care facility might not be what anyone wants but may be the best choice for everyone! there are lots of services out there you just have to find them. You don't have to be the one to do it all. Let the other siblings take a turn with mom living with them for a while especially if they are settled and married. You deserve to live too.

I do not have a social life to speak of. I am gradually beginning to take back control of my schedule. The mistakes I made when I first got here was due to lack of education and understanding the situation. Grams get worse with each medical issue. Now it is a blood clot in her foot and was so painful she could not put her weight on it, took to her bed for a couple of weeks. Now her walking is difficult, but we have been working on it. It is a progression.

I have friends who have done what I am so they are a bit more understanding. Those who love me don't have to understand, they just accept my schedule and do the best with it as they can, same as I do.

Getting your mom engage and involved is important, but you cannot force her, only encourage her. It is not an easy road to travel. I reached out to a caregivers association here and got help. Plus my dad now has a clearer understanding and my one uncle is trying to do more to give me a break. So that has been a great help. But some days I get nothing done because she needs me more. It is what it is.

I wish you the best. But you have to put you first or you cannot be of service to her. If your friends don't get it, then too bad for them. They will find out when it is their turn. Love and accept them as they are. Tell them it is not a discussion and they would do well to leave it alone. "Support me or don't"

Find a support service there in your area. That is the best thing you can do for you, that and say you need help.

I am also a caregiver for my Dad who is in end stage COPD and have no help. My siblings live too far away to help and they really don't want to see him. found out some strange things about my dad, things had wondered about when I was younger and the things my siblings feel toward him makes them not care that he is dying and they don't want to see him. They say that if they see him now it would be like "good bye jerk" and there would be nothing to talk about. I hear them there! He is egotistical and I doubt he would survive one second if there were no women on the planet to "care" for him. He doesn't do anything for himself and if I didn't ask if he was hungry he would starve to death. Hmmmm..could be my next move! Just kidding! But I understand my siblings feelings towards him as he has always been about him and it wasn't until mom died that I realized that. He tried to alienate me from my children so he could "cry" over Mom. I was hurting too but he only was concerned with himself. So now today, 21 years later I care for him and with some of my issues I have with him and my siblings issues, I am finding it hard to give a damn. Do I tell dad they won't come see him even though he asked "do they know I'm dying?" and they know..I keep them posted on his health but they have been so far removed from him the past 25 years or so that they don't give a damn either. Little things I have found in his stuff, little things my siblings tell me, things I see him do or say makes me want to punch his face! Caregiving is one thing but being a slave to a male chauvinist is quite the other. He wants me to find a man but knowing what I know about him and what I've been thru the past 25 years with him, no thank you. I'm at the point that I wish he'd "go" already so I can get back to my life and not have to worry about the wheelchairs, the 02 tanks, the meds, the meals etc. It has become an unthankful job knowing these new issues the siblings have and I want to talk to him about it so he can repent but realize it is God he needs to repent to because even saying he's sorry won't make us change our minds about the ass he was as a father. And now being sick, drinking 6-8 drinks a day with morphine, I think he is trying to end his life but is too chicken shit to do it quickly so he just gets buzzed and becomes a jerk. Some people! He said he will live to 100....I said please don't and he said "why", I just said because I am older now and I want fun in my life and not to sit around for the next 15 years watching him die. He wasn't happy with that answer at all and I don't care. Too many issues coming to light with siblings & my life that I just lost my care for him and it is eating me up alive. Sorry to rant on and sound so disrespectful but I think I am at my wits end and maybe just need a break. It's been 7 months since I've gone anywhere besides the grocery store once in awhile without him.....AARRGGHH!!

I can see how alot of people would feel guilty about leaving their parent alone, or with an out helper. My mother is 79, and I'm starting to feel a little guilt myself about leaving her. But not much. This really is like a ministry. Planning to make the best of it at home, "one day at a time" is what is normal, and ideal. Maybe some people think that "outside help" is a weakness. But consider if the help wasn't given when needed, and something happened. The caregiver might feel more guilty over that, than having to hire a home health care aide.

We went down to the V.A. in Des Moines, Iowa thinking I could have my husband committed there,but it didn't happen, the psychiatrist we talked to said she couldn't commit him I'd have to do it. Does anyone know if you can get papers to have some-one committed on line. Kathy M.

Thanks Frenchmadeline - you helped me too! (I live in Florida and need all the help I can get). I just applied for funding for my MIL to get two free days of adult daycare and a bus will pick her up and drop her off. We think she will be able to afford another 2 days out of her own money. I took her last week for a trial and she loved it. PTL!

You are at the age when your life should look like nothing but lots and lots of possibilities up ahead. And you should try to make that your reality. I don't know what state you're in but get on the computer and start with the state website. It will lead the way to programs offered throughout your state and it'll be under the heading Elder Care. Or something close. It might be the local Council on Aging. That is what it is here in Florida. The federal government if funding a lot of programs for the elderly, which means the benefit goes to the family, too, because they want more and more of the elderly to stay at home and out of nursing homes. So they help fund a lot of programs that could help you out. There are more and more hospice programs being created, and a lot of them will keep renewing the certificate necessary to maintain the help your Mother needs. The hospice provider/company will come out and do an evaluation of your Mother. Even if it is determined that your mother does not qualify now these people are incredibly helpful, with just information practically jumping out at you from them the programs that exist and the help thou can get and that's the reason they exist -- to come to the aid of someone like you, so in return you can be there for your Mother. I would start a research project tomorrow. Keep all kinds of info you come across in a notebook just for that reason. It might not be relevant now but it could be six months from now and you'll have what you need at your fingertips. If you access the internet at your local library (you don't have a computer) ask the librarian for ideas. They're a font of information. Make sure that your siblings are carrying their fair share of the load. That a means if there are three of you, you each give 33%. No one gets off because they have a day job or a girlfriend or they're always tired. So are you. Everybody pitches in and then everybody has the same amount of time off to do what they need to do. Or what they would like to do. Take a whole afternoon sometime when you feel you can leave your Mother with a book or a tv show or just taking a long nap with the phone next to her. If she can make her understand that you want an opportunity to find a life partner so one day you'll have two or three kids who would love to care for you because you were as loving to them as she was to you. Please start thinking about positive things like this and stop the worrying or the depressing thought. The French say life is beautiful and it starts again tomorrow. (Maybe I got that wrong but I like the idea of it). And though there are lots of things in life we all would change please consider one of the people who might have a few beneficial things on their side. You have siblings nearby who haven't flat turned you down about assisting with your Mother's care and one's even right there with you working the farm. There's this whole new farm to table movement (locovore ((sp)) movement) that appears to be pretty exciting i(t would seem) from a young farmer's point of view. And of course if you own the farm you work, check with small local banks and see if its possible to take a small loan out against its value, and use these funds to pay for some help for your Mother! And maybe a long weekend somewhere where other young people your age might go. Take your Mother along if that's the only way to pull it off. You are at a wonderful age and you will, I promise you, have a long and interesting life! I see children in it and I see you smiling as it's them kids running you ragged!. Good luck to you and God bless you, you are an angel doing His work for your Mother and He knows it, and you will get your reward, probably in some way that will be a big shock to you and come when you least expect it. Remember get your siblings over for a cup of coffee and some serious talk about dividing up the responsibilities. You should not carry the load just because you have the strength and the willingness to do it. Put yourself first for the next several months while you get your plan off the ground. Now I've got to go get my Mother's grilled ham, three cheese and tomato sandwich going. It's her absolute favorite dinnertime sandwich (after she finishes a huge fresh tossed salad with Marie's super blue cheese dressing (another fav!) that's loaded down with sweet juicy tomatoes and big old black olives! Tonight's her night for it though she'd probably eat it all seven nights of the week. Take care and please remember to think and answer to yourself, for yourself.

Get some respite, at least for a weekend or a few days; insist one of the siblings watch your mother. After that, look into elder care options in your area. Can your mother's medicare pay for visiting nurses/home aides to come every day for an hour or so or longer? Is she eligible for medicaid? A 28 year old should be having her own life. Don't feel guilty about it if you just can't do it anymore. No one wants to put a parent in a nursing home, but you are not a professional nurse [I assume] and there's only so much you can do. Sit down with other family members and come up with a plan. If they do not cooperate then you have the right to make your own decisions. I seriously doubt your mother, in her right mind, would want to be such a burden to you.

Do what I do...pray and ask God to give you strength to make it through yet another day to take care of your mom. Also, it helps if you are able to take a few moments to yourself prior to starting your day...think about how your mom took care of you and all the good times you had together (back in the day). I think about how my mom sacrificed her time for me and took care of me when I was child; now, it's my turn to give back. Most importantly, love yourself and be thankful!

Mimi Jenkins

You are too young to shrivel up and give up. If other siblings live on the farm as well, have a family meeting and schedule times when they can take over for you. Take a week vacation. Set up some kind of activity same night each week at a community center or college; an art class, dance class, yoga, so you can add some people your age to your life. Stick to it as though your life depends on it, because it really does.

I used to wake at every noise, anticipating a fall from one of my parents. Some how I got to the point that I realize that I could not prevent this, and that I would wake up to the noise if it did happen. I released some sense of responsibility. It is important to know that what ever happens, you will not be able to prevent it as it is unreasonable to hover 24/7.

I am 65 and feeling a bit cut off. Please do not let that happen to you at such a young age. Develop a passion you can do at home, sewing, art, jewelry, weaving, knitting, writing, photography, illustration. Just begin, ignore the quality and just keep doing this.

It sounds like you feel like you are in a rut - more like a prison. Mental illness is a wicked disease and drains the life and joy out of everyone who is around them. But I really believe that you need to step back and start taking care of yourself. Burnout and stress are not good for anyone. You really need to find out about resources in your area that you can tap into. Pray that God will help you find help. Talk to a pastor - they usually know a lot about what's available in the community and can help you in other ways. Lots of churches have groups for singles in their twenties. The more involved you get with good, caring people the more doors will open for you to get the help and answers you need. It's called networking. You might be surprised at how many people will offer you a hand once they get to know you and your situation. Go find these groups - volunteer for Habitat for Humanity, join a Bible study or single's group at a church near you, volunteer to teach English, etc. I know you are a hardworking girl and have little time but MAKE the time. Be determined to take one night (or day) a week to join a group that will take you away from your difficult circumstances and give you something to look forward to - every week!! A vacation would be good too - but it's over all too soon and you're right back at square one. I hope this helps. Also, if you've never been the type to join a group cold-turkey - start now. People are usually really nice and welcoming and you will be surprised at how much they would like to help you out!!

Whatever you do, do not compare caring for children with that of caring for an aging adult.... it's like comparing apples to oranges.

A child is something you plan for and are delighted when the time comes, they are tiny so changing a diaper or picking them up when they fall is so much easier than changing a diaper on a 150-200 lb adult or picking them up when they fall.

In a short time a child can learn to do for themselves [there are the exceptions depending on the child] and can fend for themselves inside the house.... with an adult parent it seems like life is going in reverse and every year they will need more and more care.

Believe me, I understand fully about your worry regarding your Mom. It seems like every free moment I am worrying about my parents, it's like it has taken up residence in my brain and I can't evict the thoughts :(

If you can alter your mom's diet, you might see a lot of improvement. Latest evidence indicates that by restricting carbohydrates (sugars and starches), eating moderate amounts of protein, and eating a high proportion of natural fats (meaning no trans or hydrogenated fats, or deep-fried) improves physical and mental health. The brain is about 60% fat and needs fats to stay healthy. The brain governs the rest of the body. Look up the ketogenic diet. Not that she necessarily needs to be "keto adapted," but more fats (walnuts, avocado, butter, even bacon, etc.) would likely see an improvement in her health. Excess carbs are the real problem, not healthy natural fats.

Dear ABCOWGIRL, I AM FAST APPROACHING 70, I HAVE TAKEN CARE OF BOTH MY PARENTS FOR THE LAST 25 YEARS, I LOST MY DAD 3 YEARS AGO AND I NOW HAVE MY MOM IN A NURSING HOME LESS THAT 5 MILES FROM MY HOME WHICH I SPEND AT LEAST 25 TO 30 HOURS A WEEK WITH. MY HUSBAND WAS INJURED ON THE JOB A FEW YEARS AGO AND HAD TO TAKE AN EARLY RETIREMENT SO I HAVE HIM NOW AS WELL AT HOME AND HE WILL ONLY GET WORSE. I HAVE HAD VIRTUALLY NO LIFE OF MY OWN AND WAS UNABLE TO HOLD DOWN A JOB BECAUSE OF THIER NEEDS. THRU THE YEARS I HAVE MANAGED TO KEEP TWO REALLY GOOD FRIENDS, STILL HAVE SOME BUT VERY LITTLE CHURCH AFFILIATION, AND I MAY TAKE 10 TO 14 DAYS A YEAR FOR MYSELF. NOWHERE NEAR ENOUGH!!
I WILL TELL YOU AT THE RISK OF YOUR OWN SANITY AND HEALTH YOU NEED TO GET HELP AND FAST, WHETHER YOU REALIZE IT OR NOT YOU ARE EITHER IN CAREGIVER BURNOUT OR FAST APPROACHING IT.
YOU AND ONLY YOU CAN CHANGE YOUR SITUATION AND LIKE THE OTHERS IN THS BLOG HAVE SAID YOU HAVE GOT TO DO IT OR YOU WILL NOT MAKE IT ALONE!! IF I COULD GO BACK OVER THE PAST 25 YEARS OF MY LIFE I WOULD HAVE GOTTEN MORE HELP AND MUCH MORE TIME FOR MYSELF, AS A RESULT OF NOT DOING SO I AM NOW SUFFERING FROM MY OWN ACTIONS. WHILE I FEEL YOUR INTENTIONS ARE WELL AND GOOD, YOU MUST BEGIN IMMEDIATELY TAKING BETTER CARE OF YOUSELF AND FOR SURE MORE TIME FOR YOUSELF.
GOD BLESS YOU AS YOU CARE FOR YOU LOVED ONE, BUT BELIEVE ME IF YOU FEEL DOWN TODAY, SOMEONE ELSE WOULD PICK UP THE BALL AND RUN WITH IT, SO WHY NOT LET THE PICK UP SOME OF THE LOAD NOW!!! ALL THE BEST TO YOU FORM A VERY TIRED OLD WORN OUT CAREGIVER WHO HAD DEFFINETLY BEEN THERE AND DONE IT!!

I understand how you feel. For many years my life was limited while I took care of my mom. It was like taking care of toddlers - most of your time is centered around caregiving. When I did go out, I also was preoccupied and tired, and others who were in the same situation were the best company because they understood. My mom just passed recently, and now my life is my own. The thought of getting into a relationship or anything where demands would be made is unappealing, not to mention that I don't have the energy to meet any demands or give anything to anybody right now, although I hope in time I feel differently.

In other words, what you feel is perfectly normal.

everishlass 'hit the nail on the head' as I c an see it. I have been a caregiver to my daughter for the past 11 years. everishlasses 1st two paragraphs summed up the situation quite properly. the sad part of this situation is that sometimes you don't realize how bad your so ciial life is ; until you try and socialize. then you realize that you have nothing to offer like everhlass states.
I could not have said it better.
thanks
richard

I agree with the other posts that you did need to take time for you too although that never seems an easy thing to do. I am in a very similiar situation however I have no siblings to help out and also work FT outside the home. We have tried to get Mom to look at assisted living but there is no hope of that as she is as stubborn as they come!

Its not easy and you do need more help. Your siblings need to help more and hiring outside help is a good idea.

I know how you feel, I have no job other then caring for my grandfather, conversations with friends do not go well and I feel so repetitive because its all the same for me" Grandpa doesn't feel well, he ate better today, dad is sick again,Im tired etc" Like Eyerishlass said, the conversations seem to be about the friends life because its easier and I have nothing to offer. I see myself wanting to talk a bout a real job, movies, going out to events, but, its getting more complicated.

You need a break and your doing great. You need a life and your not awful. Yes, kids depend on us but its a little different with the children, but in order to decide that, you need to have more time for you. Any decision you make, needs to be right for you. Your in my thoughts :)

I too am in the same situation - Married 3 years ago - Mom has had Alzheimer's disease for the past 8 years and lives with us for the past 2 - my life has changed - home to work - work to home - fortunately her caregiver is kind enough to take her so that I can go on a vacation yearly - but socialize - I have no friends now - because I can never do anything - if I'm not at work I am taking care of Mom - been doing this for the past 8 years - everyday is a struggle with everyday chores and life - eating, grooming, keeping her busy and entertained, having her do the little things that she can do which is not much - baths and medicine are the worst - I have cut down to 2 baths a week because it is so stressful on me - I since October have suffered an injury and need surgery the 29th of this month - ligament damage in my wrist - and then after that I have to have a meniscus repair and bone cartlidge done on my knee - I feel your pain - My sister takes Mom once a week - but it is while I am working - her caregiver is wonderful - you have to take a break - husband stays with her once a week - but does nothing with her - and they bud heads - because he doesn't know how to speak to her - when he is with her I come home and nothing is done - he lets her sleep all day - then everything is off for the day and he he's off to work. Money is another issue - the cost is $7000 a month for care - Mom's 83 she never even made that kind of money in her lifetime - between social security and her tiny pension she gets 1500 a month. My only advise is ask for help make your siblings share in the responsibility - In the end you will have no regrets that I can know for a fact - best of luck and happiness to you - I pray for all of us dealing with sick parents

I'm a caregiver again. First with my late husband, took care of him for 21 months. Now my Mom, just 3 years later. I have no help from siblings, hired someone to help clean Mom's apartment, she doesn't want me doing it. I spend the days with her and then come home to clean at my house. I hope you can get the time to have a life outside of caring for your Mom, I know it's difficult because I've been there.

I totally agree. Please with your siblings make a plan to share the responsibilities. Don't feel any guilt for wanting your own life. Your Mom won't be here forever. I don't mean you should give up your own happiness while she is here. Your state may have a person to help your family make a reasonable plan. Or your church or your town. Most towns have a social worker. If your family needs to hire outside help, don't feel guilty about that either. Some families make this all work. It is a difficult time. But it can be managed. chris

Why would you feel that you're an awful person? Because you think about your life and what your goals and dreams are? You're human.

When I cared for my dad in my home for 5 years I got to where I didn't want to socialize either because I had nothing to offer. I had nothing to discuss, no "life" to speak of. All I had was the day to day caregiving of my dad so I began to shy away from a social life. My friends called and I would make sure the conversation stayed on them and their life, what they were doing, how their job was going because, again, I had nothing to talk about.

Every caregiver needs a break. If you are able to take one I suggest you do it immediately. I used to get away to a little B&B a couple of hours away. I'd make sure that my 18-year-old daughter would check on my dad (she lived with us) and that she wouldn't spend the night out while I was gone overnight. Those 24 hours away made a huge difference for a little while.

You have siblings. Can they pitch in and take some of the burden off of you? Can you explain to them what you've explained to us?

I hope you don't put your life on hold for the rest of your mom's life. She could live another 15 years. You're young, you need to be out and about and having some fun. You don't want to wake up at 43 years old and realize that everything you once wanted for yourself is gone for good.

Do what you need to do to carve out a life for yourself. If that means bringing in your siblings then that's what you might have to do. Hire professional caregivers so you can get out. Put yourself first. That's the #1 rule in caregiving and isn't selfish in the least.

And telling someone not to worry is pretty useless because the person is probably going to worry anyway but try not to worry so much. What do you worry about? Her health? You have absolutely no control over your mom's health. She may fall tomorrow or she may not. If she doesn't then you just spent 24 hours worrying about something that never happens.

If you feel that you can't get away and that you can't get your siblings to help and that you can't hire outside help then at least work on the worrying thing. I'm a worrier by nature and I have to work hard at not worrying. Mark Twain said, "I'm an old man and I have known a great many troubles, but most of them never happened."

Only you can change your life and your perceptions.