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Both parents live with me and I can only leave the house if my husband is here or if I can talk someone else to sit in which does not happen often. What do you do to feel like there is another world out there that you can be a part of it.

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Dear Bonnie,

You've come to the right place, because I would imagine that most, if not all of us, feel exactly the way you do. We are lonely. We are in pain ourselves. We are overwhelmed and we are oh, so, tired.

There are times I think that when I pass away someday, no one will attend my funeral, because by that time, my friends will not remember me. Tears come to my eyes as I think of it. It's the loneliness you talk about. I run the gamut from depression to sadness to frustration. It is just so hard.

To tell you to take delight in what you are doing or to enjoy the moments when you truly connect is almost naive on my part. It is hard to do that when you are a caregiver.

What I will say is that I know we are doing the right thing. There are times I sit back and I know to my very core, that yes, we are doing the right thing. What we also have to do is take care of ourselves. Maria Shriver has been on TV a great deal lately, talking about Alzheimer's. On one particular day, she chose to talk about the caregivers and gave some important advice. She said we have to 1) Find a way to get some sleep. 2) Connect with other people. (For me, that is often coming to this website.) 3) Do something for ourselves. When I heard her speak, I snickered a little and thought, "If I could do those three things, it would be great, but how????"

And then I realized that I would be no help to anyone if I were sick or incapacitated. I asked the doctor for help in seeing that my parents get sleep, for them and so that I can sleep also. I cannot tell you what increased sleep does. There has to be a way for you to find that peace at night.

I am also coming to realize that even a phone call to a friend or to "someone" helps me connect. What I have to work on is "disconnecting" my brain from thoughts about caregiving. That is the hardest to do. No one wants to hear me complain all the time, but if I read one article in the newspaper or watch a few minutes of TV, then I can talk about that. It takes practice and I'm not there yet. But I have to create a life for myself, even if it is just a few minutes at a time. As for Maria's advice that we do something for ourselves, I am working on it. This is all a work in progress.

Yes, the problem is this undertaking, which has usurped my life, OUR lives, but it is also my - it is also OUR - zealous commitment to do it well, that overtakes us. What we have to do is to try not to hurt ourselves in the process.

So, I can say, "Pat yourself on the back," for doing what others may not do. Give yourself credit for caring about family. I bet you cared about community too and I bet you are a loving and giving person. Chances are you won't hear what I am saying while you are feeling so lonely, feeling so much pain of your own. I didn't at first. But I promise you one day you will realize that you are special, that the gift you are giving is a great one and that it somehow will add to the meaning of your life.
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Some churches have Stephen's Ministries with lay people who might be willing to help you out.
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I recommend that you join a caregiver's group at your church. Caregiver groups usually have volunteers that will watch your love ones for 2-3 hrs. You may want to join several caregiver groups and this will allow you to have a few hours for yourself.
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bonnieo you are not alone and this is a wonderful outlet for all of us caretakers. Its a long hard road but we are blessed to do this for our parents. There are times I just want to runaway. I think when will I get some me time. and then there are times when my dad just cracks me up with what he says. And I appreciate the times we can share together. Just know that when the time comes for the lord to take them that we all did our best and honored our parents with love and caring..Hang in there you are a wonderful person to do what your doing
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Yes it is the same with spouses esp. if they are mean to you -my husband died over a year ago and I am still upset my friends did not give me a little help esp. my church I did ask one person to give me a call from time to time but I guess she though it would bother me and never did I think I was too independent and others thought I had it covered so cried myself to sleep many nights-why I did not ask for help I do not know-but when I found this site it was a Godsend.
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Yes, it does feel lonely at times. Do you have access to an in-home healthcare agency? If so, it may be a good idea to have someone stay with your parents for a few hours while you go out and do something for yourself.
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Hi Bonnie

I totally understand your feelings of isolation. My Mom has been living with us for going on five years. I have a husband and three boys 12 and under. Every year gets harder, because she requires more care. I always need to make sure someone is here to be with Mom, if I need to go anywhere. my husband doesnt partake in the caregiving. I have 2 brothers and 2 sisters but they cant always be here to help. I envy my girlfriends that can just go anywhere at the drop of a hat. But we will get through this. We need to make plans to do things for ourselves, take care of ourselves, it just sometimes seems like to much work. Hang in there, as will I. Good Luck
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BonnieO you're not alone! Glad that we have this useful website where we can vent & connect. And not be judged for being harsh, bad or insensitive to our parent's declining conditions. There are really no shortcuts as I myself found out. Just wanna let you know you're not alone. The specific circumstances that each of us are in may differ a bit but the stress and discomfort, isolation, depression, lack of me time, lack of finances, changes in the lifestyle for the caregiver, changes in the mood and personalities that impact that of the caregivers' and all the problems and complications that caregiving bring to you and your family and how you deal with these without losing your mind is what we all share here in common. There are no short cuts. The only lasting and final solution is for death to come and take our folks away. What I do to get away from it all without being a costly mistake is to grab my cellphone and go out for a stroll and listen to music. Or I lock myself up and go online with soothing music playing on my headset. We need to find ways to cope even inside our own homes. Sometimes bothering to dial a friend, a resource person, or an agency or office can be stressfull too as they are all busy with their own lives and they have no time to listen to us. They sometimes listen but for only a brief period. So, keep your batteries charge by going out for a walk with an mp3 player or whatever digital gadget u have there. Take care of yourself first, before you take care of others. My hugs & encouragement to you, and to all of us caregivers! Cheers and happy weekend everyone:-) !!!~
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Your question is not stupid at all. The answer is yes....I'm sure a lot of us will respond to let you know that there's a whole "army of caregivers to the elderly" that feel as though they have no life, no rest, no respect, no one who understands, no relatives who will help...and the list goes on.

Since my mother moved in with me, I stopped dating, started going to the gym to try and work off my frustrations, stopped asking my siblings to help because they never came through, started working with several charitable organizations, and basically became very isolated and reclusive at the end of the day.

I gave up my "life" willingly...but you don't have to. Although it's not good to live in isolation with only responsibilities to your children and your elderly parent (s), I got tired of reaching out and not getting anything in return...until someone told me about this forum on the internet for caregivers of the elderly.

Other than my volunteer work, this forum is the only thing that I participate in from time to time, and that's only when I feel compelled to respond to someone who really needs some encouragement.

I would say to be thankful that you at least have a husband that can help you. I am single in every sense of the word...by choice. But...I also know that some husbands are not supportive...and don't represent help either. I really hope and pray that if your husband, who is right there in the house with you, does not step up to the plate and realize that you need help...that he will reconsider and take away some of the loneliness and isolation. It's no way for a person to live. Take it from me...

In the meantime, write to this forum for support like I do...when I just can't handle it anymore by myself. There are many of us who feel isolated, lonely, and forgotten...but we press on either out of obligation or love.

The important thing is that we can keep each other strong enough to keep giving the care that the elderly need...even if they never say "thank you"...two words that are very seldom spoken to the caregiver (and remember that some of the elderly parents can't say these two words due to dementia, Alzheimer's, and other conditions)...but they are words that would make all the difference in the world to those who are struggling to provide elderly parent care...
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When I first arrived at the forum I described my life as, "living in a plastic bubble." I watch as other people live their lives, take vacations, or seem to not have a care in the world. I would take any one of those situations. I have been doing this for 3 years (by choice) and caregiving, along with other life challenges that have recently appeared, have kept me in a constant "fog."
I have no family nearby, not that it would make difference. My best friend of 30 years just decided that she didn't want to deal with all this "icky" stuff...after supporting her through the same "icky" stuff. Incredible!
I try not to get stressed, because it will take a toll on my health. I try not to be angry about my absentee sib who Mom adores. And all the other stuff that is going on in my life...well, let's just say I am at the end of that thread that I call my rope.
I pray and pray and get no response...I guess God just wants me to look a little harder for the answers - or be patient which is not my long suit.
I have a type-A personality and I cannot just "fix" any of these things. They just need to play out. And that is the hardest thing for me.
This forum is a life saver. I wish all who read this post, strength, courage, and the hope that brighter days are ahead.
Peace,
Lilli
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Yes. Been living with my 83 year old mother for over three years and it's a lonely and isolating job. My brother isn't any help. My husband has been my lifesaver. We rarely go out by ourselves because it is just sooooo hard to find someone who has the time to come in and stay with mother. We finally got a sitter in Sept. so my husband could go for his cancer apointment at MD Anderson. Mother nearly had ten heart attacks because we did this. No concern about my husband's health or our marriage...just her being left with a stranger. I told my brother what we were doing and he agreed with the sitter....he didn't volunteer to come over and stay. At least, he agreed.

No one comes to visit us, except ever so often. I wonder where all of mother's friends are, but most of them are elderly and feel bad, too. Mother follows me around like a two year old. If I leave her for 10 minutes, she comes to see what I'm doing. And, she gets so bent out of shape when my husband and I come back to the bedroom after supper just to talk or take our medicine, etc. She comes down the hall asking what are we doing and can't we watch TV with her in the den. Never alone minute.

But, anyway, one thing I do now is when mother takes her two hour nap, I might run to town and do something and always go through Sonic or McDonald's and get me a diet drink (like a vacation). And, I started grocery shopping by myself after mother goes to bed at night. My husband is here if anything happens. I ride the electric cart and have fun shopping. Mother has never noticed we usually don't have much to buy when she goes with me to the store. So, those are two things I do every week now. It's fun and I'm alone.

Caregiving is a lonely and isolating job. Just try one creative thing to see if it works...like I did above. People really don't understand what we go through it. People are always telling me they are soooo glad I'm staying with my mother because of her bad health. They compliment me, but not my mother. She is rude and irritable with me and no compliments. Just be creative and find someway to get out.

I'm going to start meeting a friend for coffee at mother's naptime. That will help with the isolation. And, someone my age to have a chance to talk about different things besides our bad health.

God bless you. I struggle everyday. And, I'm tired!! :) I know you're tired, too!!
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I know exactly what you are talking about. My father had a stroke and the following week my mother had a fatal heart attack. I have been taking care of my father ever since. I feed him every day and if I am 5 minutes late coming home from work, he calls me, "just to talk". My sister isn't much help so it all falls on me. I really feel alone and trapped at times. I'm trying to get him a social life, but its not easy. I haven't been "out" in over 6 months. I finally started working ot on the WII and taking long walks so I can have some "me" time. I keep telling myself that it will get better and I believe that. Try to make time for yourself, even if its just locking yourself in your bedroom or walking the mall. Don't loose you, your hopes and dreams. It will get better.
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Bonnie, everyone is right, it is one emotion all of us caregivers deal with, but hang in there and do contact Alz Assoc as Hap said. Just call and start talking leaving nothing out, you will be surprised how much help and suggestions you get from them. Please dont try to handle this all alone, you cant!!(at least not without losing your mind).
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Yep.
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Hi Bonnie--Yes the feeling of isolation can go hand in hand with careging...and in your case you are taking care of both parents I believe. I would join a support group, weather it be with the Alzheimer's Association-or otherwise, and get feedback from others...in this way you can perhaps apply it to your own situation. If you would prefer to call the Alz Assoc helpline their number is (800)272-3900. I have been there, and know what that feeling is like.
Hang in---help is on the way~
Best,
Hap
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Oh you are not alone. I do sometin\mes wonder when will I get my life back. Can no longer decide to go out for dinner with my husband , everything has to be planned out in advance. Getting my brothers and sisters to help is almost impossible. I wonder what it is that makes us different. Is it something we are born with, this willingness to help our parents when they need us. Raised in the same house yet I seem to be the only one there. Since my Mom moved in with us I have tried hard not to get bitter but sometimes its an uphill battle. Just don't understand the indifference in people. Just keep telling myself what goes around comes around. So hopefully I am building good karma for when its my turn to need help. Hang in there I know its hard.
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Totally...I spent three months at my folks...my husband stayed home (for work). I was so engaged in their life, I truly left all that was me behind. I was lucky to sleep 6 hours at the most. My appointments were for them, my research and errands for them....and I didn't have time to socialize ...and being far from my own home, MOST of my friends weren't around...but one....and it was so hard to get the feeling of 'it's okay' to take a night/afternoon off.

There IS another world out there that you ARE missing out on. It's not merely a thought, but reality.

You need to give yourself permission to take time off.
Line up help; ask your State's elderly services, or investigate local nursing homes for their staff who may seek to make extra 'parent-sitting' money so you can get out of Dodge now and then.
Find another in your shoes and 'swap' a day...something that helps me get in touch is to care for my friends' (most annoying) mother. When I do, it helps me restructure some of my reality and find refreshment in dealing with my own parents.
Also, find ways to have some of your other chores managed...maybe you have a talent or ability and you can swap that for someone to prep' food, or clean toilets...this may free up a tad of time that you can use, even if just for an extra 1/2 hour in the tub.

Try hard to challenge the thoughts that it can 'only' be like it is now: lonely and alone feeling. Else you'll create this as your destiny.

It's a very hard process...something we cannot ever really be trained for.

And know someone's thinking about you and cheering you on with prayers (hope that's okay)!
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