How can I find time to take care of myself without going out of my mind?

I'm fortunate to have several caregivers who come to the house on weekdays. On the weekends, my brothers I I do all of the care for our Mom. She is completely in bed, sleeps most of the time (even falling asleep while we are feeding her). She isn't talking much but still enjoys eating and having our company- briefly- and we keep her clean and comfortable. We have been through the stages of her being agitated, trying to climb out of bed, etc. If the situation were different, we might be getting her into a nursing home, but at this point it's manageable... We are seeing her decline by the week, then a plateau, then more decline, then another plateau. It is exhausting but somehow we are able to get through it. We absolutely give each other stretches of time "off" and it does make a difference. It's the main thing keeping us going. Plus, we all have a sense of humor.

katykaz, I am sorry that you lost your dad this year and that has made this a difficult year. Has your mom's doctor evaluated her overall health and dementia recently? Please tell the doctor that you can't even get yourself a shower without the worry that your mom might get up and walk. Has her dementia reached the point where she needs to go into a nursing home. I'm not a doctor, but with your mother being so frail and it being so dangerous to walk that you are scared to take a shower, I think it is high time that either some outside caregivers are hired or she goes to a nursing home where people can look after her 24/7 in three shifts. Right now, it does not sound like you have any time off.

You need to love yourself as well. Loving your mom as her caregiver involves caring for yourself properly for who is going to care for her if your health would fail? A third of caregivers who go it alone end up dying before the person they are caring for do. Make sure your mom is getting the proper care she needs and this point and don't sacrifice your caring for yourself properly. There is no reward for sacrificing yourself to the point where you become a martyr.

I have been caring for my mum with dementia for over 12 years now she cant do a thing for herself bit still thinks she can get up and walk so leaving her to even get myself a shower is a challenge i recently lost my dad who i also cared for so this had not been the best of years but i love mum so much i will continue caring for her even though i know im not caring for myself properly

This may be an obvious observation, but I noticed that in my running about and taking care of things that I am often not drinking enough water! It is so easy to forget to stay hydrated. If you drink enough water it helps you feel more focused and able to deal with everything. Sometimes if things are rough, stop and have a couple sips of water and take a couple deep breaths to help you feel better!

It is hard to listen to advice on taking care of yourself, when you are overwhelmed with caring for three others, not counting yourself. One gets so far behind, and sometimes I don't know how to get all the paperwork done as well as to run a house that I didn;t before. Taxes, health care, future nursing or assisted living homes, patience, knowledge, etc. etc. Then I feel my health is going down..cancer, ankle ulcers, c.o.p.d., sleep apnea, worry, worry worry....It sure easn't easy....marymember

You are special! Begin by being kind to yourself and stop worrying about pleasing anyone. No person can make you feel bad unless you let them!

Heart2heart, I'm sorry you tried to make Christmas special and it was ruined. You sound like you really need a break and you must make caring for yourself a priority. Please read what others have written and try some of those ideas.
One thing that's encouraging- is if you can take your mother to church, that means she is able to get out of the house. You can look into a 'senior day program' (a daycare-type program for elders) in your area. Please look into it.
Also, you can still start the New Year "right" by lowering your expectations (of making things 'special') and by promising yourself that you're not going to let your mother berate you, for any reason. Everything doesn't have to be special. Good enough is okay. This takes a change in your thinking, which is possible. There's not much you can do to change your mother's thinking, but you CAN stop letting it control you.

It is not easy to do all this alone and if you have friends that offer to help that is great. In my experience the friends who would actually help live out of state, and the friends nearby turn tail and run. I am not sure what they are afraid of. Dropping a casserole or some cookies at your door shouldn't be so scary. You really see who your friends are at times like this. I am also hearing of a lot of sibling fighting going on with people I know dealing with parent caregiving about finances and care giving. I have no siblings to help me, but at the same time I am not experiencing conflict with a sibling like some of my friends are. Many times I wish I had siblings to help. I guess people act differently under pressure and some people just run. For those of you that may have had a rough Christmas...take comfort in that it is about over, you got the work done, and try to remember that tomorrow is a new day.

We'll, as I dreaded my Christmas Day is ruined after busting my $:):);$;&!!?!! To make it special... My heart is so destroyed... My mother starting crying today feeling sooty for herself an has to control everything... She 'demanded' I talk to a person I didn't! Want to talk with on the phone (she pushes the phone on me when I don't want to talk with people that I am not close to)... In many case I worked so hard or make this a peaceful, joyful day but now it sucks... Even after taking her to church last night. I try and try but because thee is no one else (my brothers) to help she berates me... I so wanted a peaceful Christmas and to start th new year off right... Just can't win no matter what!

Friends often say, "Please let me know how I can help." Help them help you. Ask a friend (or family member) to cover for you so that you can have time out for yourself.

Tinyblu, The first week or two was the hardest for me and then I began to get the routine down. Do not feel guilty about feeling bad. Is there anything that might occupy your father a bit like something to read, or a picture book or photo album, or a favorite TV show, so that you might get a moment to yourself while he is busy with that? Maybe even some nice musiche likes might lessen his anxiety about being alone.

I am so glad that I am not the only one who feels this way. I instantly became a caregiver a week ago and I feel like my life has stopped. My father doesn't want to be alone at all, yet feels that I must constantly alter my schedule to be with him. I have no idea how I am going to do this and I get so angry about it all... then I feel guilty about being angry. Meltdown number 1,000 for the week is coming. Wowsa

I am beginning to believe that I can not control everything. I do my best to make things work out for my husband. I do have a part time aide,but some things my husband just does not care enough to see to it that he should what the doctor tells him to do. Yet he can do what pleases him. The rest is left for me to do and remember. Well, I can not help him unless I see to that I care for myself before it kills me.

Yes, I'm 3 yrs into taking care of my Dad and Mom ; Mom has Alzheimers for 3 yrs now and my Dad was deemed incompetent 3 yrs ago and is more of a handful than my Mom. Yes, Mom was showing signs of Alzheimers about 4 yrs ago and then it developed pretty quickly. My Dad became suddenly sick; almost died a yr later. He survived but now they are both battling dementia together...talk about getting sick at the same time, heh ??? Is pretty difficult at times but somehow I'm hanging in there...I make sure all their needs are met, and all the loose ends are tied up before I say to them..."ok now I will be seeing you in 2/3 days...call me if there's an EMERGENCY because I have some things to take care for myself"...or I'll say to them "I'll call you in a 1/2 days to see how you are doing and if you need anything"...the weekends are off limits to them unless there is something I absolutely have to see them for, but then I usually call. This has worked out pretty well otherwise I would have gone out of my mind a long time ago. When my Dad first got out of the hospital I was by them 4-5 days a week...my house turned to shambles, I was ALWAYS exhausted running around like a fruitcake!!! But then it started to smooth out once I figured out how to manage things and putting some parameters in place....But as their dementia increases, so does their anxiety and I still try to stay as close to the parameters as possible. I love them both so much, if I'm a little tired, or if my dishes aren't dried and put away, too bad...then someone in my house can do that for me...but as the sicker they get, and the further away they go, I know my time is less and less with them so I just take whatever time I can fit in for myself and take it as it comes.I've learned to be a little flexible, keep some humor, have some 'alone' time in the morning drinking coffee and watching news,playing some Playstation 3 w/my teenage son and eating out to a nice meal once a week.... I have no problem sleeping at night !!! :)

For me the feeling 'guilty' part is the worst for me. I feel like I can never do enough or the 'right' way even though caregiving has changed the person I 'am'. I'm working on reading a book about living in the now... I've lost this. It's Christmas and I'm feeling rather numb... I so want to 'feel' happy again. It's been so long since I've 'known' myself. This is wheee siblings could have helped... Not only with the parent, but in helping their brother or sister be who they are and support the caregiver's happiness. It not only drains you but slowly takes so much away from you that you didn't realize... Working on it with the others of you my friends... Blessings

My father has been in memory care in a facility near my home for 4 mo. now. I brought him to the state I live in so I could oversee his care and finances. I am presently selling their home and moving my Mother and brother here also. Some days I spend hours looking at medication list, assisted living billing, scheduling his doctors appt. and still making calls to realtors out of state and relaying all of this to my Mom. My days are crazy busy and my Father is not living in my home. Driving my teen to and from school, many after school activities, and a husband who travels out of the country frequently, I never seem to have any time. I am so grateful that Dad is in a safe place, good care, and has other people his own age to spend his days with. I need to live my life and so does my Dad. I believe he would not want to be a burden and in no way is he. I stop many times during the week and plan on bringing him home for Christmas as we did for Thanksgiving. This has worked out wonderful for our family. I keep very close contact with all the aides at the AL. I frequently stop in to check out Dad's room, his clothing, (although he keeps it immaculate...not one thing out of order!) and see how he's doing. After we visit I will let him know I need to get home now Dad, your Granddaughter needs me. If its late and Dad's ready I will walk back to his room help him get changed for bed, turn down his bed, leave him a little sweet treat. Many times I have tucked him in and turned on his nightlight, reminding him I will see you soon. Dad always says ok be careful driving. This has been the best of two worlds. We have separate lives, however he is a huge part of my life and not a day or night goes by that I am not thinking of him and what I can do tomorrow to make his life easier and filled with as much joy as possible. Merry Christmas everyone...We need to remember when we come from a place of love it's always enough.

Hi Everyone- about 'finding time'...it is an absolute necessity to arrange for someone to stay with your loved one so you can get the heck outta Dodge.
Find out what insurance will allow and then sign up for it. It's hard, at first, to trust 'others' to do what you would probably do better, but you will deal with it. You might be pleasantly surprised. It's like leaving a tiny baby with a sitter for the first time. You just have to force yourself. And if insurance really won't cover any 'care', then ask around, talk to your friends, neighbors, church people or workmates- there are people who are willing to stay with an elder, some won't accept money, but others will gladly take a few dollars and then might be willing to do it regularly. You have to ASK. You have to MAKE YOURSELF do it.
Go on, reach out. You're not going to expect them to change diapers or cook dinner, but they can get you OUT of the house for awhile.

You put your self in it you find your way out.

Never sometime s you have to let your people go and live your life. They will live there s

Getting up at 4:00 A. M. daily can't continue! You are going to experience caregiver meltdown! Get some help.

This may be kind of 'obtuse' but it dawned on me as my mother called me just now about something that to her is of utmost importance but in my book can wait till I get around to it. What dawned on me - and what I've been trying to work on doing - is understanding and acting on the fact that what's a 'priority' for her isn't necessarily a priority for me. Example: She's been trying for DAYS to call the credit card company to get a check for her rewards points - we do this at the end of every year - call to get a check for her rewards points. For some reason she isn't getting through to them. I told her a couple days ago that if still having a problem I'd give them a call. Well, she called just now to ask me if I could do it for her. No problem. Well, normally no matter WHAT I was doing when this sort of request came through, I'd drop everything I was doing at that moment and get on the phone and do it - partially to please her and partially to clear the decks so as not to have anything for her hanging over my head that needs to be done. There are two problems here: 1. There IS really no pleasing her and it's taken me 50+ years to figure that out; and, 2. when I stop whatever I'm doing to fulfill her requests...that's all that I end up doing usually with the rest of my day...fulfilling that request and getting sidetracked with whatever problems arise from it. Also, once that request is fulfilled, she has another, and another and I end up sacrificing time I'd planned on devoting to MY things that I needed to get done for me and my household, to her. Priorities. The rewards points are NOT a priority, and don't expire/will be there even into the next year to be collected by us if it takes us that long to get to it. So I will call the cc company when I get around to it, which may NOT be till next Monday if that's how it happens to go...if I have a spare minute between wrapping gifts, whatever and feel like it, then I'll call sooner. My point is that I'm learning - by trial and error - that her priorities are not MY priorities when it comes to administrative or other non-essential things. This helps me claim 'ME' time and keep it 'ME' time and from frittering 'ME' time away minute by minute on her seemingly never ending requests, and helps me feel I have at least SOME control over an otherwise crazy and unpredictable situation.

If you do not take care of yourself, then who will take care of your parents??

Suzzieq: Please try not to feel guilty when you take a little "me" time. At first I did too, but then I realized I am taking care of 2 people here...first my bedridden Mom but also taking care of myself too at times so that I can be here for her during the moments she needs me. What has also helped me is to compartmentalize time in my mind...take things a day, an hour, a half hour at a time and set aside a small compartment of time for yourself here and there. It is ok to do so!!

Last year, I got completely stressed out from long term unemployment of over one year, caring for my then 93-year-old Mom and also enduring her severe protests (she has bipolar) when she was not allowed back to our CA home from CA assisted living. In April 2013, Mom had been removed from our home after several fall injuries in our place. Finally, it got to be too much for me to focus on her and my own life and too expensive for her to stay in CA. On August 31, 2013, my brother in Oregon moved her to an assisted living facility near his and his wife's residence. My brother's wife was retired and had the time to help Mom with her living arrangements. My mother just passed four weeks ago at age 95; God bless her soul. Thank God I had some family to help Mom out!!

I found it difficult to "find time" for myself when I was the sole caregiver for my father outside of the home health aide I paid to care for him while I continued to work full time outside the home. However, I will concede that the time I was at work, distracted me from the caregiving concerns and worries for about 8-9 hours a day 5 days a week. I think it did help me keep my perspective on both the job and the caregiving.

About once every 6 months, I did pay for an aide to care for my father to go to a show or dinner with a friend. Looking back I should have done this more frequently but it takes time to plan ahead and with the demands of the job and the caregiving , Fridays wipe around and you can not get someone for a Saturday evening to work as a home health aide easily. Plus I tried to keep people with him that he liked and not just anyone the agency would send.

However, I think the biggest thing to watch is that you get enough sleep to keep on going. Lack of sleep makes everything you do as a caregiver just immeasurably more difficult.

Good Luck.

People who care about me sometimes remind me to take the time to care for myself. And I'm sure this is well intentioned. But what does it mean, really? Where does one get this 'time.'

Truly speaking, I don't have control of my time any more. I look after my 96-year-old mother who has dementia and doesn't walk well so she has to be watched. I never know when she'll sleep or wake. I can't predict her behavior nor how much cleaning up after her will be necessary on any day.

Yes, there's lots of time in between chores, mostly spent sitting near her. I can read, watch TV, do little projects. But something happens to the brain when this sort of captivity is forced upon me. Normal mental resources aren't available. I go dull and muddle-headed and lose sight of the big picture.

I'm not always able to overcome this. But one device that helps is to make a list of things to do as time and opportunity permit. For example, I can't go take a shower and wash my hair unless Mom is asleep or someone else is watching her. But I can take care of my feet. I can do sewing repairs. I can set up the ironing board nearby and catch up that work. And so on.

A bit of creativity is needed and some discipline. The trick is to remain focused on the fact that BOTH the elder being cared for AND the caregiver are precious human beings, deserving of the best possible life, moment by moment. From that perspective, the self care practices arise of their own accord.

Blessings to you and yours during this special season.

Your health and your kids come first. Can you send your mom to the senior center a few times a week? You can often get door to door bus service for low cost. I would go insane without that service. Thanks to all senior center people! My mother goes every weekday.

ask for help. Men are also NOT disabled in this area.

I have been so overwhelmed and when I do try to make me time the guilt is even worse. As always I am my own worse enemy. My New Year promise is to make more me time - because as you all have said "we go down, everyone goes down" please keep these chats going so that I know I am not alone with any of these issues - thank you all. Merry Christmas

I've had to move into Mom's home, which made the most sense in my situation.
What has helped for me, is to make sure I "book" time with girlfriends to go out once or twice a month and, during lunch breaks at work, I walk around the block and notice the birds, decorations, trees, etc. If the weather isn't good, I read and eat lunch at my desk or in the break room to talk with others (I'm a therapist). I've (periodically) gone to a meditation class and then used the techniques I learned. I make sure to sit down to eat a decent breakfast and pack a good lunch (so I don't eat from the candy dish or get crappy fast food). It takes a commitment to myself that I'm worth it, and that if I DON'T take care of myself, I won't be able to enjoy the freedom that will be available to me when this caregiving stage is over. I also get to Meeting on Sundays at least twice a month, where I get spiritual support. Each of these things I do takes no more than a few minutes to maybe 2-3 hours, while someone else cares for/sits with Mom. It's helping me maintain my sanity and my sense of humor. It makes me feel better just to KNOW that I'm taking care of myself, too.