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

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!

I have been taking care of my mom since my dad passed away in 2009. I have quit my job so I can be here for her 24/7. My fiancé is always upset with me that I can not just pick up and leave to do something with him. He has many times told me I should just put my mom in a nursing home. She does not have any health problems that would put her in there. She is very alert and in good health for 92. I get so frustrated with him that he just doesn't understand the responsibility of taking care of a parent. He does not help me with any of her care. I have taken her to an assisted living facility for adult day care. I can't do this very often because I do not have the resources to pay for this. Does any one have any thoughts on my situation?

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.

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!

I would say that people have to walk a mile in our shoes to understand the caregiver, a friend of mine seemed heartless many times when I told her I had been up 24/7, she had an answer for everything and really know understanding... Until she became a caregiver for her mom for a couple weeks after a surgery. Binding with people like in this forum can give us the support we are looking for.

Don't wait on people to come by. No way would I come by w/o an invitation. There are many posts on here about how bothersome it is when people just drop in. Call people, even if it is just to chat and laugh for one minute. Encourage the patient to call or make the call for them. Text a friend and say "Can you bring us a cup of coffee, tomorrow?" Reach out and see what happens. Also, when someone does visit, do not take on a "case of the miseries." (poor me.) Good luck.

@ 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.

Bmorehappy, It would be like when someone has a child die. How in the world would anyone know how that feels if you haven't gone thru it yourself? So it is with care giving. How can someones friends comprehend what that's like? I say to cut the friends some slack on that front, but DO NOT isolate yourself from them just because they don't know what you're going thru. Stay in the game and stay involved with your friends, REGARDLESS. ♥

Yup, and what's worse is that "friends" will apologize for not helping and not being there, and then in the next breath start telling you how lucky you are. Geeze. I don't think there has ever been anything so difficult in my life, than caregiving for Mom after she was Medivac'd (3 1/2 months ago), for 5 1/2 hrs orthopedic surgery. I've lost every ounce of fat off my body, I can't sit in a chair without a pillow, because my bones are poking into chairs. You see people at the store, they want you to do this or that, they don't understand. I simply cannot be in two places at once, and I've started to tell people...if you really need me at ____, then I need help getting Mom there or help with Mom so I can be at _____. Respite is only helpful if you've had a chance to rest and you are ready to go out for a bit. It's just like the situation for people who have disabilities, I was temporarily disabled, if person hasn't experienced it, the person will not have a clue what it is like.

yes I do no what you mean about friends, I feel I am in SHOCK MY FRIENDS TO a certain point but def cousins and moms friends have totally just tossed us aside seems when I mentioned the word Dementia that was it no I MEAN NO ONE NO ONE CALLS OR EVEN COMES BY AND THAT HURTS IF HURTS ME ENOUGH TO CRY I CANNOT IMAGINE BEING THE REAL VICTIM SHE TOLD ME LAST NIGHT SHE FEELS NO OE LIKES HER ANYMORE AND ME I AM ALWAYS SAYING I FEEL LIKE IM IN MOMS PRISON LEARNED ALOT SINCE I HAVE BEEN TAKING CARE OF MY MOM ABIUT PEOPLE THAT IS PAST 13 YRS HAS BEEN A REAL TRIP AS AFAR AS PEOPLE SO CALLED FRIENDS GO SO YES I DO UNDERSTAND WHAT YOU ARESAYING AND FEEL FOR YOU, TAKE CARE LOVE SANDY22

@ countrymouse,
its taught me to listen to people in a more proactive ( ? ) way. you cant comfort someone unless you understand their concerns.
actually its much worse with the phsyc doc. he met me for the first time and after 50 minutes made an entry in my file that i had poor insight and poor judgement. perhaps.. but i dont have a prematurely bald head with black moles competing for real estate all over it. ( jerk )

Captain, of course we never know what these professionals' personal background is. My bet is that the doctors who really understand are the ones who've been there themselves. It's the kind of experience you take with you whatever you do next, after all. Hey - maybe it'll make me better at whatever else I do?! There's a silver lining to look forward to.

dumb people dont get it, smart ones do. my va phsyce, clueless. my hepatologist doc -- offered me any mental health services necessary to get me settled back down.

I understood exactly what my sister was going through, when she cared for our mother. I am sorry that your friends don't, but I bet that they are looking out for your best interests. I think that you should listen to them. Sometimes people from the outside have a better grasp of things.

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.

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."

Even some professionals don't get it. I looked for a therapist to talk to about adjusting to my new life as a caregiver and not half of a retired carefree couple.

When I explained to my first therapist how my husband acts, she told me he had oppositional defiance disorder and ought to be on Meds.

Not that she's ever met him or, as a social worker, is competent to diagnose such things.

Needless to say, I found another therapist before the second session.

My mother is also from the 'old' country... I'm in the exact same boat you are in (in everything your just described)... And, 'no' I definitely don't think people 'want' to care or hear about caregiver's... they wouldn't flat out do it... The only peace 'we' have is the knowing that we're not alone and that 'we' have each other to know how very special we are and what we have sacrificed (whether right or wrong).

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.

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.

bemorehappy, sometimes friends understand to some degree in that they recognize they could not do what we are doing. I think that makes them a little uncomfortable. I've had people tell me how patient I am, that I am honoring my parents, and more complimentary phrases. Maybe I should feel good about it, but in some ways it makes me uncomfortable. I certainly am not a saint.

I do know that somehow, someway, caregivers must get out and do fun things. Living with continual decline in someone we care about takes a toll on us mentally and emotionally. We must do our best to engage in conversation about other things than what we do 24/7. It's not always easy, because it's what we do and who we are at this time. Thankfully we've got this site for mourning, venting, sharing, and even laughing.

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!

What FadingShadows said is so true. People who have never been a caregiver to an elderly person, simply can not understand what you are going through. Just as a person who has never had a child can fully understand what motherhood is like. It's not anyone's fault, it just is a fact of life!

I really don't have much time for a social life either, so I know where you are coming from. I do however, still have my best friends and I think that it's important to note that your true friends will always be your true friends, even if you have to pick up the friendship later on. Even if you have to email rather than get together to have a chat. Best of luck to you!!

BeckyB, I wonder if you feel like starting a new thread? Your question: "how do I transition my AD-sufferer husband to a facility without making him angry?" would get many answers, I'm sure.

Unfortunately, I think many of them would point out above all that - you can't. But that you should do it anyway, first taking your time to find a facility that would provide him with activities he enjoys, such as cooking. There are very good memory care units, it doesn't have to be the end of everything. Do post a question, I'm sure it would really help. Best of luck x

Bmorehappy, I agree about the long, hot bath and the unbroken night's sleep. Sigh. We can dream, eh?

I get anxious, too, about how much I'm letting slide - friendships, study, work. On the other hand - this is temporary, you know. God willing there will be life beyond care-giving. Some of the things we want will wait, or I certainly hope so.

Re your paid work being compromised by your mother's sudden decision that she MUST get on with her PT, though - hooey. If she wants to pull a stunt like that successfully she'll have to be a lot less transparent about it. Call her bluff. If the PT could wait 'til now, it can wait 'til you've finished your projects. Seize the moment, tell her you're delighted she wants to resume PT, take her for now, see how she gets on, do maintenance exercises with her at home (personally I have to stand over my mother with an axe to get her to do any, but perhaps your mother's in more co-operative mood), and then schedule future appointments only for times when it's convenient for you to take her. If she really does commit and makes progress, maybe your brother will soften? But don't give up paid employment for a ruse, whatever you do.

Your good friends will keep inviting you even if you have cancelled on them at short or no notice. The ones who don't get it and just think you're being unreliable..? Well, if you still like them, you can hope for their sakes that they never have their eyes opened. I tell all friends and family to expect us when they see us, and if they don't like it they haven't said so. I've given up being embarrassed about sudden no-shows - there's nothing you can do about it, and feeling bad about it just doesn't help anyone. This too will pass...

As my husband who has dementia and several other issues, gets worse, I get told from everyone that he needs to be moved to a facility. I keep saying that it's not time yet. He is still able to do things that he wont be able to do in a facility. He likes to cook. I double check things, making sure he doesn't do anything that could be dangerous to him or me.

He has his bad days and his good days. But he's angry most of the time. It seems like nothing and no one pleases him. He can't be left alone for long periods of time, so I need to stay close. He yells a lot, mostly at himself or his pain...but also at me. It's getting harder and harder to just let it roll off. He also never wants to go to bed. So getting a normal night sleep hasn't happen for months. He is non-weight-bearing, using a power chair for mobility. It is taxing on me to help him transfer back and forth from the bed to the chair. He is also totally incontinent and is non-compliant with his care. If I say anything to my family, I get told that he needs to be moved to a facility. It's hard to always get told that. They are probably right. My question is how to transition him to a facility without him being angry? I want him to understand why it's time. How do I know it's time and not just because my sister tells me it is? I want to do what best for him, even though it's difficult for me. We do have a care giver helping around the house. Actually we've gone through several, because he is so difficult to work with. I'm leaving so much information out of this...I could almost write a book. I just need help to do the right thing for me and for him.

I do try to see things in a positive light. I try to be encouraging and not complain or say something that would start a fight. Any suggestions or comments will be appreciated.

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.

I hope my true friends never have to find out!! My so called friends that a different story! LOL

As far as your Mom is concerned: I think it's time that you either "piss or get off the pot" meaning take the job so you can get out of her house...