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Often the first thing posters say is, “You chose this.” Most times people don’t have a clue what caregiving is about until they are in it for some time.


The other comment is to place them in a facility if needed. Good advice but that often takes time to process the idea. They are looking for immediate empathy and have others listen to them completely. If they bring up the topic of a facility then it’s great to speak about it.


Sometimes these comments can intimidate a newcomer, so I would like to hear from new and older caregivers what would be most helpful from others. Let this conversation be led from their point of view.


We have all seen it, possibly said it. Sometimes newcomers feel these remarks are insensitive at the very beginning.


So I would like to know from caregivers what is the most comforting and helpful advice to hear from posters during your early conversations with older members of the forum.

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Thoughts on welcoming newcomers...what helps or doesn’t help?
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I am not posting this to be a judgment from me. Merely an observation. A thought that has been on my mind lately.

I like direct people who don’t beat around the bush but I wonder if it is said too early in the conversation. I see people get defensive and confused.

I couldn’t process it all in the beginning. I think many of us felt this way.
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I appreciated down to earth and realistic advice. From the simple helpful hints like bedside commode liners to the advise about hiring sitters and getting feedback. Its ok if you are tired, angry and just cannot be a caregiver everyday. I prefer to do as much from a distance as I can. I have learned how to be kind to myself. I manage a sitter for my mother and a team for my aunt. They both live in their own homes.
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In family service,

It is okay. It is a whole lot easier than having a loved one in your home. I am glad you are kind to yourself. My life became consumed with my mom when she lived with us.
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Thanks NHWM.

There was a poster who could identify with my situation overall. Instead of pushing for 'divorce him', she offered on my private message: "When you are ready". That said, knowing things could get worse, may well get worse, or may even wax and wane from worse to better to tolerable, to worse again.....

There is an active thread right now with experienced people giving good, sound advice to put the loved one in a facility. That time may well have arrived, or will be coming soon for that poster's loved one. However, there could be a turnaround for the patient/loved one.

If the forum members would be able to offer alternatives in the meantime, there may be a few marriages, or a few people who can avoid being sent away to a facility. If that were not true, then
my own loved one would not be here today. If I brought that up and gave my experiences, so many would jump on my suggestions as wrong. So I won't post what I know, or argue with what others know.

The best thing about the forum is when other caregivers can come alongside someone, get to know them, be there for them with gentle support.

It is important to know, really accept, that every 'case' (situation, circumstance, person, and their loved one) is different. And for us to respect that.

Additionally, some caregivers, with a little support, can be dealing with what seems a miracle to others. imo.

What I want from others?
It would be like one 'friend' offered when the struggle seemed hopeless...it was a bible verse that covered the whole circumstance at that time and gave me the peace of acceptance.
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I am new here and live in another continent.
I feel accepted, people are dedicating me part of their time, listening to me complaining or trying to share my experience. This helps. I think we caregivers often feel lonely and covid has made it worse.
It is easier to speak with people who have similar experiences.

I find it difficult to talk with people which has not been through that and would just judge without actually understanding what we are going through.
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Send and Anche,

Great posts! It’s very hard at times. Anche, it is lonely from the isolation.

Send,

I love that message that you received saying, “When you are ready.” It shows understanding and compassion.
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It is so wonderful that there is a support site like this because so many aren’t able to get out. I did start going to an ‘in person’ support group for a time. A social worker led the group. She was lovely.

I benefited greatly by the AgingCare site and still do. There are always going to be differences of opinion. We have to take what is useful and push the rest aside.

The occasional bickering is unfortunate, I feel most people want harmony and respect for one another on this forum. We can try to learn something from different views and decide what does and doesn’t work in our situation.

It’s so true that every situation is different. Also, what works for some doesn’t work for others.

Anyone can say an inappropriate thing from time to time. Misunderstandings are completely normal every once in awhile. It happens. Not worth dwelling on. It’s best to move forward.

Even after caregiving ends such as in my case, there are lasting effects. The sad memories don’t ever completely go away. We are forever changed.
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