It never bothered me at the beginning, but now after almost 10 years, I find it patronizing. This is mainly because these are the same people who constantly ask how I'm doing/how my Mom is doing, yet will not lift a finger or even offer to help me. Most of the time they just walk away, stop communicating, etc, leaving me constantly feeling let down and isolated.
Care giving is a solitary job, isn't it? You find, though the years, that there aren't many (if any) people you can really rely on to help you, or to even listen to you vent.
Look into getting some hired help; these people are paid to listen, to do chores and errands, and sometimes, they wind up caring MORE than the so-called 'friends' and family members who ask empty questions with no concern for your answers.
Good luck!
xoxo
susan
Do you want them to offer to help?
Do you want them to say "it must be so hard"?
Do you want them to suggest resources?
I have had all of the above said to me when my mom was ill. I have SAID all of the above to friends.
Frankly, its NEVER the right thing to say. Because you just want the burden lifted.
No one can do that but you. Are you burning out? What are the resources that can be tapped?
Find a caregivers group in your area, so you can get a meaningful hug from someone that really understands.
I liked hearing that phrase that I'm a good daughter, but then my situation was very different, and I wasn't to that much for that long of a period of time. What used to bug me was the phrase, "You are so lucky to still have your mother!" One time I snapped back, "She is so lucky to have ME!" The person thought about it for a few seconds, and then said, "You are right!"
When someone tells you this, what happens when you tell the asker something concrete that THEY can do to help?
That might make them think about how they respond.
Obviously they are going to say they want the truth. When they do say something like "I am exhausted, I can't get out often and if you would not mind next time you are at the store could you pick up a gallon of milk and a large package of eggs and the new People magazine?"
The difficult thing with this time is you can not ask someone to come sit with mom so it is hard to get a little "me" time and that is so important. So one more thing you can ask is..."mom is not great at conversation at this time and I miss catching up on what everyone is doing, she takes a nap around 1:00 could you call me on Wednesday around 1 so we can catch up?"
Many people want to help they just do not know what to do so if you give them a little nudge, a little guidance it might help.
The condition of cognitive decline, whether it's MCI, Alzheimer's, FTD, or whatever, brings with it a certain stigma. Friends disappear, even family may become disassociated. You're right, it's patronizing, frustrating, maddening. I'm sorry, but I never had an answer for "how is she", and still don't. I just said, "she's fine" and hoped they would quit asking.
Me, I have learned to go the other way when I see someone I don't want to talk to. (and I am a talker) If starting down an isle in the grocery store and I see someone I am just not in the mood for, I quickly go down another isle. Or I look like I am in a hurry. "Hi Marge, would love to talk but in a hurry to get back to Mom".
I think you may really be asking “how can I get these people to help“ ? If so, you have to ask them directly ! Tell them that it’s becoming too much and that you want some relief. Some may pitch in. You are not asserting yourself, when you worry whether it’s ok to be annoyed. I can say this, because I have been there too. Try to decide what type of help you want, and then ask people directly. Even if some of them can not physically step in, they may have other ideas or even just offer you emotional support.
Also seek some professional help. Such as in home care for your mom, to relieve you. Possible counseling as well. Take care of yourself. Caring for an aging parent can be a huge burden. I saw a counselor when I was feeling at wits end trying to care for my mom. It helped a lot !
Forgive me if I misunderstood your question. Being given accolades, just made me angry as well. (“Thanks for all you do”...) People who’ve never done caretaking, especially for a relative, don’t realize what a burden it can be.
Best of luck. This site can also be a great support to you during this time.
There is no "should" either in feelings or in weather reports--feelings (and weather) are best described as "they are what they are"!
I think you just have to have your comeback handy as others suggested and then get what you need from people who have walked the path. Either join a support group, like this or in person, and even go so far as to be bold and ask a friend for their help. Start out with "I know you care as you ask how things are going, so I’d like to ask you a favor. Would you do "such and such" for me on Tuesday? (Fill in the blank) you might be surprised that they will help. So many people truly have no idea what to do. It’s akin to when someone dies and they say call me if you need anything...which is worthless. So call them and put them on the line. You will then find out who "gets it". As a caregiver myself, I am now able to put myself in other's shoes and offer help and not wait to be asked.
However, what I find most annoying are those giving me advice when all I want to do is to vent. All I want is someone to be a soundboard so that I release some steam. Telling me I should do this and that (as if I haven’t already tried) just pisses me off.
made simplistic answers to difficult issues. Mostly because they did not have the intellectual or emotional intelligence to respond to you with more respect. I don't like the people who gave to me these ready made, fast food answers. To this day I'm Not in touch with them and I really regret not cutting ties with them earlier.
So now the question becomes, what can I do to make things better? Is there anyone in your life who is good at either actually helping you or helping to brainstorm some ideas?
What is YOUR support system? Doctor, therapist, husband, siblings, extended family? Can you call a meeting, make some coffee and cookies, and tell everyone you need some help? Kind of a reverse intervention-- you're asking for help!
And then you need to figure out what you need.
What if you stop the people who tell you you are a good daughter and make a REQUEST for help? What is the worst that can happen-- they can say no, but what if they say yes?
TO Person #1: Do you think you could come and watch mom once every two weeks on Sunday night from 4pm to 8pm? It would give me time to do "fill in the blank".
TO Person #2: Do you think you could help me do some grocery shopping once a month?
TO Person #3: Could you help me make dinner once a month?
..and so on.
If you have 5 people and they help you regularly, would you feel better?
While you don't want them to feel defensive, you do want them to stop in their tracks and consider what you need and what they are saying to you.
However, don't be so sure that friends or family do not care about you because they do not offer help. You never know what people are going through in their own lives. Many people do not talk about their own problems or situations. There are those that have things happening we would never be aware of. For many, it is impossible to help others beyond what they are responsible for in their own lives.
It would be good for you to find some support for yourself though. Search for support groups or organizations in your area. You may be surprised how many there may be. Some are volunteer to help or very minimal pay. Being able to talk with people going through something similar to your own situation helps a great deal. These places also have resource information that may help.
Best to you, I hope you find the support you are needing.
Are you annoyed with them or with yourself?
I am an RN and one thing I believe is we are not all cut out to be caregivers.
We dont all have the patience or energy for it. That doesn't mean you dont want the best for your mother. As a nurse I have seen and experienced a lot of things; some of it very good and some very bad.
There are caregivers who have endless patience and energy and truly enjoy spending hours caring for, not just their own loved ones, but the loved ones of others too. There are also people who just dont have the patience, stamina, skills or emotional capacity to deal with people who are ill. Those people have talents and abilities that are RIGHTLY served elsewhere. I am not saying this is you. In fact I am speaking in generalities here for anyone who might be reading. Only you can decide if this is a temporary feeling on your part, or if you need to find some other way to care for your loved one. Not being able to or even wanting to care for a loved one is not a sin, if I were ill I want someone to care for me who WANTS to be there, not someone who is forced to. If I had to choose a daughter who could come see me happy VS a daughter who was tired, mentally exhausted, depressed....ect ect ect I would choose a happy daughter and assisted living, home health aides or someone else. People can only give their best to others when they feel their best. Sometimes being a caregiver is not meant for everyone. It takes a lot of self reflection to truly decide what is best for a loved one. Other people dont know and are just trying to be nice. If you want answers for a situation you are not happy with that starts with you.