Do you ever feel that many of your friends don't understand what being a caregiver is all about?

Unless they have direct experience in long term caregiving, most people cannot comprehend what the caregiver is feeling or experiencing. Being responsible for another person's well being 24/7 by 365 is demanding - emotionally, physically and spiritually. It's not their fault, it's just that some things can't be understood unless they are experienced.

Fortunately, this forum is a place where people do understand and there is a lot of support for one another. Take advantage of reading the questions, discussions and answers and you will be strengthened.

My approach is to keep your best friends close by making a special time to be with them and stay interested in how their lives are evolving. Minimize the time spent discussing your difficulties with your friends. There's only so much they can offer to relieve any pressures and stresses you are experiencing. Enjoy their company, laugh often and loud.

You mentioned taking a bubble bath, one of the things that I am being extra careful of and that is to make sure that I do whatever I need to take care of me and continue to have a life. I know you may not be able to accept every invitation but make a point to go out to lunch or spend a couple of times during the week walking in the park. I live in Mn and of course we have a lake near our apartment that I just drive to and sit by the lake. During this time I turn off my ringer and just breathe... if the world falls apart during my time it's just gonna have to do it. In order to take care of my parents I have to take care of me or I'll break down before they do. I just want to encourage you to run away from home every once in a while. I set up Metro Mobility to come and get my parents for their doctor appts, I take them most of the time but sometimes you just need a little break. Don't opt out on your life it's simply not optional!

Yes, anyone who is not caregiving can be sympathetic, but they really don't know what you are handling and as happened with me... they may scatter to the wind, following their own passions and commitments in the long run.

Hold on to as much as you can ... of your work, your friends, your loved ones. After I immersed myself in my mom's care and then her complicated estate for my absent siblings, it feels like everyone moved on. It's Saturday night and I'm reading this blog alone at home, sitting in the quiet night. Thought I had friends and plans, but they evaporated.

It's hard to do, but my best advice is to try hard to keep a bit of your own life alive. Try to find common interests with non-caregivers, otherwise they may move on to those who do share their interests.

Something I am continually trying to revive now that I'm back on my own again.

Best wishes to you!

Yes, I know what you're talking about. Most people don't have a clue, nor do they have a mental context in which to understand our explanations.

Speaking for myself, it's not really my nature to fill this role of caregiver to my elderly mother who has dementia. I'm grateful for the miracle which allows it. And the truth is that just to get through an average day pushes me to my limits. When an emergency comes up, it stresses me out and then for days afterward I'm in a post-traumatic state. Try explaining THAT to anyone who hasn't been through it.

What gets me through is to compassionately detach from the emotional hooks which come in these situations and to offer everything I do to God. So my attitude is that I'm not doing this stuff for an ungrateful old lady and I'm not just doing my duty; I am performing a service without expectation of return. Amen.

@ nancy,
sadly this isnt a game. to me the purpose of a friend is to pool our resources and watch out for each other. i had a female " friend " . i could come over when she needed me and punch list everything that was falling apart at her place but she couldnt take my dying mother out for a sandwich or a ride. i have another female friend who would walk a thousand miles across glass when i need help. only one remains. was it wise to ditch the former one? yea, she wasnt a friend she was / is a self-centered loser.

New acquaintance, lived on the way to/from my folks who lived five minutes from each other. Folks an hour away from me. For a year acquaintance would say drop by on your way home. After handling things for two elderly parents every weekend, w/some emergencies during the week at times, I was exhausted, and there was no way I could drop by for a cup of tea, glass of wine on my way home on a Sunday night . The person eventually stopped contact. I really wanted to get to know her, but how could she possibly understand? Later, after one parent passed, the other one started to need more help. When she was hospitalized a few times, I practically just shut down outside of holding my full time job. The stress and the exhaustion take almost everything from you. Still recovering from the mom's hospitalization last spring. Mom is doing well, but I feel 150 years old. Glad I was there for her - appreciated or not - but I am not sure I can handle the next round - God forbid. A few close friends do understand and have been helpful. People around me in general wonder why I seem so tired and stressed all the time. That's life, but I know how you feel, and we just have to find healthy ways to cope, and people who are supportive.

Many people who have even been touched by caregiving have a somewhat different attitude. A friend of my mother's, who later became a friend of mine when I became her caregiver for 4 years, lost her husband a few years ago. He had COPD but was able to get about, go to the bathroom and so on until he went to hospital, caught a virus and was gone in 3 weeks. Her mother lived alone and did for herself until, at age 90, she fell, broke a hip, went to hospital and was gone in a week.

Compared to so many, I reckon this "friend" had it easy. Now in her late 60's she's bound and determined to just have a good time, has no time or patience for anyone who isn't upbeat and makes her laugh. She spends hours with her dogs at a dog park every day and the rest of her time shopping while her house falls down around her ears. Sad, but each to their own I suppose.

Sounds like you have a case of depression, and one of the best ways to get out of it is both medication and socialization. Since you (I assume) are not from the old country, then you can speak up and tell your mother you need time to be with your friends. If she objects, so what? Is she going to lock you in your room? Take a stand for yourself, and do not allow someone else to control your life (with exceptions). Your brother has the right idea. Just say no. She obviously wants you at her beck and call, but you can say, "No."

I feel your pain 100%! I'm an only child/grandchild/living family member now caring for my 88 year old Grandfather full time (I moved him into my home 5 months ago). I also work full time outside of the home. It's extremely exhausting. I'm 42 years old and have lost my ability to move up at work because of how much time I have to take off to take him to doctors appointments and tend to other things he cannot do for himself. I take off an average of 5 to 6 days a month. I feel fortunate that I haven't lost my job all together. He refuses help from any outside agencies, so I can't even enlist the help of transportation or a social worker. I have no promise of a professional future, no social life, no love life, no time for hobbies or enjoyment of any kind. I numbly go through the motions from day to day. I do try to explain to my friends why I've had to drop out of life, but they do not understand. One comment was "well you have 1 or 2 hours after he goes to bed, just come meet us out". Sounds easy, right? But anybody who takes care of an elder full time knows that by the time you have 1 or 2 hours to yourself at night, all you want to do is take a shower and do something that doesn't require energy or thought. Or is that just me? :) Anyhow.....hang in there. It definitely is not just you. It's unfortunate that true friends can't truly understand our position. I'm working hard every day at being less depressed and much more grateful for the opportunity to care for him, but it's a challenge every day.

I can absolutely assure you that NO ONE knows or understands what you are going through as a caregiver UNLESS they are or have been in your same exact shoes! When I began this journey I didn't realize how difficult it would be to care for my mother. I thought when my father passed away that my mother would now be able to travel and we could have fun the last years of her life....little did I know that dementia was slowly raising it's ugly head and when my father died, my mother chose to lock herself away in the house, refusing to go anywhere.

I have friends and family that just DO NOT GET IT that I cannot run off and leave her alone. I am grateful to be asked to come on vacations or asked "when are you coming over to see us" but I have also had friends that want to come here on vacation and stay at my home. I try to explain to them that I cannot do this but they completely do not get it. Mom is use to everything being done the same and the same people in the house every day, change everything and all hell breaks loose! I actually lost a long time friendship over this very issue. People just do not get it and they never REALLY LISTEN to what you are going through or how difficult your situation is. I thought this only happened with young people, but it has no age limitations.

When I even try to go on vacation for two weeks during the summer, I have a very difficult time as my sister who lives with us would have to take over care, only she doesn't want to so there is normally a huge fight right before vacation. It amazes me that although she lives in this house she feels no compunction to lift a finger to help with Mom's care. I am POA so I am being punished by having everything dumped on me.

I wish I could tell you how to cure this problem for you, but honestly everyone seems to think of themselves and not put themselves in the shoes of the other person, so they don't understand. In a way that is good because they can bring you a bit of the "outside world." You would not be so happy to see them if they came and spoke of nothing other than your sad situation... you would be depressed and want them to leave!

Take care, we understand what you are dealing with!