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?
People ‘fall out of love’ and they also ‘fall out of friendship’. I won’t speculate on why we ‘fall out of love’, but it’s interesting about friendship:
- If we stop being in the same place and the same time, it’s quite normal to get together very occasionally, talk about the old times, and feel that the friendship has continued. If you see more of them because once again it’s ‘same place and time’, you often find you’ve actually drifted apart. You may even dislike each other.
- If something overwhelming happens to either of you, it can change what’s even possible to think about. You don’t ‘click’ when you have nothing in common, at least nothing that’s as overwhelming as your problem. And once again, even when it stops, you may find that you’ve drifted apart.
If an ‘old friend’ doesn’t bring a casserole or say the right things when it matters, it doesn’t mean that they ‘weren’t really a friend’. If they keep doing nice things for you, it probably means:
- They are a ‘helper’ by nature, not just ‘your friend’.
- They understand only too well about the overwhelming issue, so in a different way you still have something in common.
- They are a bit lonely.
- They would still be a friend on the ‘talk about old times’ basis, but that doesn’t work for you.
It can make you feel bitter to decide that people were ‘not really friends’ or just ‘fair weather friends’. In fact most of us have the wrong expectations of friendship. Perhaps we should look for a support group that has good on-line links, and let our old friends off the hook.
You have to take time away from these folks even if it is for a minute or half hour as long as you know they are safe. If we don't take breaks, we will end up sicker than the people we take care of.
Go on a mini vacation even if you must hire someone for the weekend.
As for fairweather friends, they moved on. I haven't heard from any of them in years.
The joys of Caregiving. LO is 24/7 care because cannot do anything for themselves. Give me no time to myself.
Sometimes when we hear about people's problems, it's a human reaction to immediately try to come up with solutions. And there are just some problems that defy solutions. So talking about things like that make people feel helpless or uncomfortable, and so they try to avoid those conversations.
Does this possibly describe some of your friends? If so, then maybe preface a conversation with "you know, I just need to voice some of my uncertainties and fears to someone to give them a "face" so to speak; once that happens, it becomes easier to deal with them. Would you mind being my sounding board for a few minutes? I'm not looking for solutions, I'm just looking to vent." Sometimes setting "ground rules" like that make it easier for the listener to actually listen, as opposed to wracking their brains trying to solve the unsolvable.
Or maybe something like, in answer to how are you doing "well, you know my mom has this progressive disease. It's not getting better; it's not going to get better. I'm doing about as well as I can be under the circumstances, which is to say not very well at all. But I have to keep on keeping on, you know?" And be prepared with an idea if their response is "Is there anything I can do?" Because if there is, then is the time to say it: "yeah, you can listen to me rant and rave for 5 minutes without looking to have me committed" or "yeah, you can tell me about something beautiful you see out your window, to remind me that those things still exist" or "hell yeah, I would love to meet for a cup of coffee and talk about anything but my mom's health" or something of that nature.
People aren't going to understand what you're going through unless they have gone through it themselves, but that necessarily doesn't mean they won't be sympathetic to your struggles if you give them a chance.
I hope you can find some friends who can offer you whatever support you need in person.
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.
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.
Not there yet. She's not incapaciated, and I have no legal authority to place her in a nursing home. POA is springing only when deemed incapacitated. If and when I reach that point, I've already had that discussion with her and her doctor of placing her in long term care facility.
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.
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.
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.
My few friends from childhood also understood. That didn't mean they wanted to be around my mess and drama with my mother.
No one came to the house when I was there because the negativity and misery was just too much for anyone. It made me very sad, but I understood.
For your own good, you have to put some distance between yourself and your mother.
If it means sending her to adult daycare on the weekends, do it.
Even if she doesn't want to go, force her to. Believe me she will prefer two days a week in daycare to being put in a nursing home/memory care.
Don't rule that out though. If you have to place her do it and don't beat yourself up with guilt over it. That will do no one any good, least of all you.
There are no scripted words to answer friends when they ask you how you're doing.
Most people when they ask how someone is doing they expect a simple answer. 'Fine', 'All right', 'Well enough', 'Okay'. They really don't want to hear about your mother's Alzheimer's progression, your hard and exhausting caregiving journey, or hear a play by play of incontinence and adult diaper changing.
Believe me, I did caregiving for 25 years so I know exactly what you're dealing with because I've worked for countless families just like you.
Tell it to the people here in this group. Or to a therapist. Or to a close friend. A real friend will listen and understand. Then find some outside help so you can get away from your situation a couple days a week. This is so important.
As for people not understanding, well take the good wisdom of the great Keanu Reeves.
He said:
"Eighty-percent of the world doesn't care about your problems and the other twenty percent are happy you have them".
Please get a little bit of a life for yourself before caregiving completely destroys you.
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.
Expectations = premeditated disappointment
I also agree that people who have never personally experienced caregiving for an elderly LO with dementia cannot relate, just like someone who never had kids cannot relate to being a parent no matter how hard they try.
Nowadays there are online, affordable therapists. I'm not implying you have a mental issue, but maybe just really need to unburden yourself to someone -- and who can blame you? A therapist may also give you better, objective advice on how to interact with people around you so that it doesn't make you feel more isolated.
I wish you wisdom and peace in your heart!
We shouldn’t have unrealistic expectations of certain people when we know they have a history of not being supportive!
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.
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.