They don't understand why I'm exhausted all the time, why I can't be spontaneous and go out with them, why I don't have the energy or stamina to talk on the phone... explaining Alzheimer's is a progressive disease and what my day to day entails seems to not get through.
They don't want to hear about the anxiety, doubts and panic that plagues me anticipating the next fall or regression with her disease.
When I'm asked how are you, I feel so overwhelmed I don't even know how to answer that, so I just say "fine" and change the subject. Anyone else found a better way of answering?
I've had no super close friends locally that I would have ever asked anything of during my parents lives. The relatives that always said they Wanted To Help never even went to visit my folks in AL and then MC when that was the one thing I did ask of them. #Truth
Out of town friends and local relatives have sent me gift cards to restaurants for take out after my cancer dx. Not one has come to visit. Nobody Knows What To Say. Hello would be a good start, huh? 🙄
I hear you and I sympathize with you. I don't blame you one bit for saying "fine" when asked how you're doing. Unless you feel that you can REALLY talk to someone and be heard, what's the point, when you know they've mentally checked out after the 2nd sentence.
Some things in life we're alone with.
Sending you a hug.
If they haven’t been through it themselves, they probably won’t ever understand. Sad but true.
Almost worse is when they say, “I know just what you’re going through” when they never took care of someone with dementia. I had an aunt like that. She never had the care of her parents but stopped by their house a couple of evenings a week as their health declined for reasons not dementia related. That didn’t take long, and she never had a blip in her work, social or family life. But she insisted that she’d been through the same thing as I had. There was absolutely no comparison.
Seriously, I don’t know what the solution is other than not to talk to such people so often, if at all.
Sometimes I think we expect a bit much of our non-caregiver friends. People get upset because no one asks how they are doing then when they are asked they only have the energy to say 'fine'. They say fine because they don't know if their friend REALLY wants to hear how it is really going. Or maybe the caregiver just wants 5 minutes to talk to a friend about anything but caregiving. But our non-caregiving friend don't know that. Nothing wrong with saying "I just don't have the energy to get into it all right now, can we just talk about something nice?"
And yes we will lose friends because we don't have the ability to be a friend back at this moment in our lives. True friends will stay on the parameter and wait until we are ready. Or they will try and help but don't be mad if they ask the wrong things. Let them know what you need.
Yes, yes, yes to 5 minutes of being able to talk to someone about anything BUT caregiving *or* the person for whom you are giving care! And this goes for ANY type of caring, be it an elderly parent or an infant or anyone in between!
I remember saying to my in-laws after I had my first baby that I still had other things going on in my life BESIDES my infant son - besides how often he pooped, how well he was eating, how long he slept, etc. My MIL just apologized, hugged me and said she remembered feeling the same way, and after that always made it a point to converse with me about something other than the baby.
It's bad enough that your entire world shrinks down almost nothing other than the daily drudgery of caregiving, but when people ONLY see you as a caregiver and that's ALL they ever want to discuss, it narrows that world down even further.
It would have been great if they would have asked how I was doing too. There were times when I felt invisible.
I agree with Fawnby though. If a person hasn’t walked in your shoes they may not be capable of understanding your situation.
Some friends are not meant to be lifelong friends. People come and go in our lives.
Remain close to the people who truly care about you and ditch the rest.
Isn't that just always so? The asking only about mom and how she's faring.
Happens all the time.
They would of course ask how things were going and I would try and keep things some what light as my intent was to get away and have a good time, not dwell on what was all going on at home.
There was a time however when I met a couple of my friends for supper and I had had a really rough day with my husband and lost my patience with him and hollered at him. I shared that with my 2 friends who looked at me in horror as they couldn't understand how I could do that in the shape my husband was in. Of course that made me feel even worse, and I learned that not all things should be shared with those who have no understanding what true caregiving really entails, and that of course it does sometimes(though in my case not often)entail losing our patience and hollering.
So that brings me to my MOST IMPORTANT point, and that is to find a local caregivers support group that you can openly share whatever emotions and feelings you're having with other folks who know EXACTLY what you're going through and won't think twice about the fact(or judge you)that you hollered at your loved one.
That was my experience, as I the day after I met those friends for supper who made me feel bad for hollering at my husband, I had my caregiver support group and shared with them what I had done, and they all were so understanding and said "well of course you lost your patience and hollered at him. We all have done that at some point in our journey."
That was what I needed to hear and it made me feel better to know that I was not alone in losing my patience.
But truly only those who have been there done that can REALLY understand what you're going through, so cut your friends some slack and just go out and have some fun with them every now and again, and find yourself a good caregiver support group to vent to.
You hollered at him. You're human just like everyone else in the world and NO ONE has an endless supply of patience and compassion.
Losing your temper a bit and yelling at someone is a long way from abusing them.
Your friends who looked at you in horror when you told them just did not get it. People who aren't living in it always think that caregiving is easy.
A few fools who have never had to do it even think it's "rewarding". No it's not. What reward is there is watching someone you love suffer and deteriorate? Or in breaking your own body doing the grunt work of caregiving?
There's no reward there.
Interestingly, as I get older, I am finding more and more coworkers and friends that are now having to deal with home care for their parents or in-laws. They are now coming to me and unloading about all of the issues and stress that they are having to deal with. Instead of them helping me, it turns out I am helping them. I do find those conversations helpful, just like the posts that I read on this forum. Just knowing you are not alone really does help get you through it.
Really? Well, great. Because that's what the whole world would prefer to hear, isn't it?
You aren't giving your friends even your honesty, then, and I feel they must not be very close friends. I can't imagine that when you are this overwhelmed you don't just say what you just said to us: "I feel so overwhelmed that I don't even know how to answer that; so I just say 'fine'".
There are friends and then there are acquaintances. A friend would call and say "I am running to Safeway; give me a list of stuff I can get for you".
A friend would say "I am on for watching (mom? dad?) for you; you just book me and take the afternoon off any day this week or next. See a movie. Go to the library. Shop. You have my phone and I have yours and I will call if I need you".
A friend would say "I am watching Mom for the afternoon and Irma is taking you to lunch. Give us a day".
A friend would say "Casserole on the porch! Enjoy!!!" A friend would say "I am coming over. You are having a hot bath and a glass of champagne. Then we are eating popcorn and watching Tender Mercies even IF mom interrupts."
Friendships REQUIRE honesty. Start talking to your friends. If they aren't there for you then they aren't and never were friends. Start reaching out through local council on aging, your faith based group, whatever to find support groups who understand. Or CREATE ONE. Even if it's a phone reachout for when you are feeling desperate.
And most of all know that friends CANNOT mend what is a life-not-working. If you cannot do in home care anymore then you need to reassess and to stop trying.
I am so sorry and I wish you the best.
In an ideal world, yes, friends would do all that you said. In my world, friends are busy living their own lives. It would be nice if they could do more, but not all of them are nearby or even in the same time zone.
I have a friend for many years was conservator for her elderly relatives. She's done. She wants no part in any of it. Does that mean she's being selfish for not wanting to do what you suggest for me?
Circumstances change, one day you find yourself not feeling so close to a friend you once were. Situations come to light that weren't there before about a person until you really see them for who they are.
I just returned to a high school teaching job, and the first day back everyone was so sunny and happy talking about their trips to Costa Rica and the like, and asking how my summer was. I tried to prepare myself as best as possible. I only told the few people closest to me, and pretty much burst out crying. To others I said I was caring for my sick mom, and tried to change the focus back to them asap.
This is when we find out who our true friends and supporters are. I’m very blessed to have at least 3 good ones. The others I find, to my surprise, are merely acquaintances.
PS. I friend’s mom died very suddenly at home a couple months ago. I know she is going through her own shock and grief. We have tried to mutually support each other. Yesterday she suggested I start going through and discarding my moms things now to lessen the work later. What? Some days I don’t even take a shower, or can barely get a meal together. Her mom did not spend a single day in the hospital, nursing home or in home care. As everyone above said. People who haven’t been there JUST DONT GET IT.