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One of the hardest parts of being a caregiver is the painful isolation. It seems many others say the same. I often feel forgotten by family, invisible even and wonder do they care? Or are they just forgetful because we are not able to be involved like other family and friends. It hurts especially during holidays and important dates, hospital stays and times when leaving the house is impossible.


Of course, my family cares and occasionally they ask how the boys are. But asking how I am is not frequently asked. I am told they are so confident I can handle things they never doubt if I am making through the day. Which should be a compliment, but it's not always. At times, during really hard times, it feels like an excuse to forget me.


Even if that is not the truth, emotionally drained it can feel that way. So it got me thinking. What would I even want them to say or do for a daily uplift? One member here mentioned encouraging text messages would be nice. I agree and I do get emails a bit more frequently. But during long hospital admissions where I don't get home for weeks at a time. Text is the one dependable thing I can access. And there are many weeks that the number of medical appointments keep us out of the home as we sit in waiting rooms or for medical procedures etc to finish, my laptop is not able to be carried. So what would help? What would be an encouraging message to me? To you?


-Hey, was thinking about the boys today and wondering how are YOU doing?


-I found this funny joke and thought it might cheer you up- (insert funny joke or quote)


-I remember when you encouraged me and told me( same to you)


-Send a funny gif or comic image


-Silly family photo ar quick video that says I love you etc.


-We love you, and don't give up. We believe in you.


-Hey, did you remember to take a nap/medicine/meditate- whatever self care thing I am known to forget.


What would you like to hear or think to say to someone in a difficult caregiving role? Am I alone? Maybe there are other ideas? I would say mail a greeting card but an entire week can go buy without me being able to walk to the community mail station to pick up mail. Ideas?

I think anything that is a true genuine caring gesture would help.. no matter what is said. If the gist of the message is that they care and are concerned about you and are wanting to reach out.

I posted a rant about generic type text messages that I have gotten through the years which come across as uncaring.. to me anyway. For example, if I hadn't heard anything from my sister in months.. no checking in on me or my parents..don't know if I am alive or dead.. haven't seen her in over 2 years... then on Christmas Day get a text 'Merry Christmas' .. period. Same with some other relatives.

I think you can be caring over a text.. but it can also come across as cold and ..uncaring. It just depends on the background of your relationship.. I probably would like the texts that you have there.. but as frequent flyer said.. I would also prefer a hug, a call, a snail mail letter ..or an email over a text... anything that takes a little effort...

or even better an offer to help..
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OctoberAngels Dec 28, 2018
Hi KatieKay,
I totally get what you are saying. I get even more the robotic automated messages from supposed family friends ends up hurting more than helping. It's kinda like I mentioned the assumptions "I got this" attitude people apply to me without ever asking if I am okay or if I need help. 

I have come to the conclusion people don't ask how I am because they don't want to feel responsible or on the spot to actually give a damn and do something to help.

I feel the same way towards some in the religious community who constantly verbalize, "praying for you", but never do anything beyond that. I am sure some are tangled in their own struggles and that may truly be all they can do. Or others who are fearful and perhaps unable to get past those. Like a fear of hospitals for example. We spend about 12 days in the hospital out of every 35. So I do my best not to become overly judgmental and closed minded. 

But no one will convince me, some of those people are doing whatever they can to duck their own accountability for being distant and disconnected to supporting a loved one. Anything to avoid making a personal sacrifice of time or money. I sit there numb some days thinking, "is it that damn hard to send a card etc". 

For me, the text is helpful, especially the text-to-speech feature because as you said, look away for a moment and someone is on the floor doing the whole "I've fallen and can't get up" cutscene. I just set my phone to announce everything (not always an option obviously, or reasonable) Email takes more time for me. Ultimately I don't care what the manner of communication is. Just do something meaningful and real, as you said. 

Doesn't it irk you people say they want to help, the ole, "call me if I can help or need anything," and when you do they never call back, or worse, duck your calls in the first place. At one time my mother told me she needed a break from my calls because all that I could ever report was bad news. It cut so deep. Like, what am I supposed to do? You ask me to call, ask me how is everything, then when I do, you want me to fake joy joy happy all day. Which in turn brings me to people really don't want to know because then they would feel bad for not helping.

My mother came around and before she died, did all she could and it meant a lot. Now my father has taken up a determination to occasional "do" something and gets angry at others for not caring. But that has only been in the last year after coming for a visit and watching doctors storm my oldest son's room to keep his heart beating, and seeing me in a cast, with a bleeding eye, and having to dash to my other son's hospital room because his sat levels dropped to 70. Literally trying to choose which nearly dying son should I attend to. The one who is barely breathing or the one whose heart is barely beating. The scene and experience explained my situation far better than my words did and for the 1st time in my life saw my father cry at 79. 

The days at home are intense and non-stop. In some ways, hospital admissions are the only time I get supposed help. But many of us here know that is not really a break either.

Thanks so much for answering, reading and listening. By the way, what type of help would actually be the most useful? I almost always tell people having groceries delivered, hot or prepped meals, house cleaning, extra hands for the day so I can sleep, laundry service etc, things like that. Anything that gives me an actual break and decompression time. What about you?
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When I was helping out my parents, I pretty much gave up dealing with a cellphone [flip phone in my case]. It was only used for emergency texting. I was finding texting became a distraction and all it takes is a couple seconds of not paying attention for an elder to find the floor. Multi-tasking wasn't my thing.

The caregivers my Dad had, they all had cellphones which I didn't mind as I know there is down job with any job. My Dad would tattle if one was on their phone too much.

Ok, for an encouraging message, a hug would do nicely :)
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Reply to freqflyer
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OctoberAngels Dec 28, 2018
Thanks for answering. Yup, I agree. Not paying attention and/or distractions are a big problem. My home is still in a "toddler-safe" mode. Right down to the covered wall corners and edges of carpet flattened so toes don't get caught, and rolling walkers get stuck. I even had to have some doorways lifted so the wheelchairs could be rolled more easily. You're right about the constant visual.

Oh my goodness, a tattle tail Dad. Thank goodness he is alert enough to share that with you. It would disgust me to find out those given the responsibility to care for my loved one, would rather be playing Candy Crush, or texting nonsense to friends all day. I agree it's a job and employers certainly have a policy about that. I am still fighting my state to get the aid needed in my home, but once it starts keeping tabs on whether workers are behaving appropriately is a fear already for me. Especially since one of my boys can become non-verbal for days at a time and due to brain injury unable to write or whose tremors prevent typing.

It sounds like you have local family that could offer hugs if they actually made the effort. Sad they don't, and seem not to understand how meaningful they potentially can be. I have no local family. The closest is 1000 miles away, and we spend so much time in hospitals and medical waiting room that I have no friendships to lean on. The isolation is nearly complete in that manner. I can't expect hugs, although it sounds great and would be positive contact. Even short visits would be nice. Sadly, with one of the boys when even a small group of family get together the typical conversations where people exchange talking causes his brain to shut down. And even asking him friendly questions like "how are you", "did you catch the game", "what books are you reading", in the same conversation overwhelm him. His executive thinking is too damaged.

I still get shocked how little it takes to trigger that and worry one day I won't notice and fail to catch him on time when he collapses. So visits become a hardship, and aids watching a TV too loud create a neurologic crisis. So private listening on tablets or phones is all that can be done. I still don't have any good ideas of how to make it better for outsiders to come in. Sitters in the past have even called me while out at my own Drs appointments to say they needed to leave because of...get this...being bored-sigh.

Ops okay I got on a weird tangent there. Does it matter to you what type of messages? Or is the effort of saying anything ok? My Mom used to send animated eCards that made me laugh a lot. I loved those and miss them very much now that she is gone. She took the time to set up many at a time and schedule them to be sent. No one else has ever done that. Would that have any value to you? 

I am trying to see if I could find a way to encourage other caregivers who perhaps are strangers to me, but who I can still send meaningful support. That might be naive of me and probably is. 

One thing is for sure. We seem to all want others to at least ask us what the hell would help and uplift tired maybe broken spirits. And I can say, thanks for not giving up on your Dad- I am sure you never would anyway. Just an expression. He is at least safe and loved. Which is a big deal. He's lucky to have you and for you to care how he is cared for even when apart as well.
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