I have listened, and I thank you! Realizing, I can do anything, but not everything.
I am teaching a vision board series in our business, and isn’t it funny how we can all just continue to pour into others ... when all along our own vessel may be running low ...
So, I am refreshing my vision board ... and this photo is in the center as a reminder to take care of myself.
For those reading this, now or later ... We go through more than we will tell as Caregivers. We give up a lot and rarely have a social life. We get sick and emotionally worn out. It’s a lot for one person, and no one will ever know this journey ... Caregivers are the unsung heros! Stay encouraged...
I am sure those on this forum can offer more than I, so many of you have walked this walk and are so giving in offering wisdom and advice; for that I am thankful.
Written by
bazooka111
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26 Replies
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Looking back at your posts I see your respite break was 5 months ago. It’s time to set the next one up. Every 6 months you should get a week off.
In the USA if the person is in hospice home care the care giver gets a 5 day respite break every 90 days. The client goes into the in unit hospice care facility. This is all on hold with the pandemic.
Your words, "We get sick and emotionally worn out. It's a lot for one person and no one will ever know this journey"........
Read it again and again Kim, then for good measure, read it again. How can we put that right? By yelling at the top of your voice, to tell everyone. Nobody knows, you are right. So you HAVE To tell them. Ask for help, get some more respite. This isn't letting your Mum down. It's quite the opposite. Without help, your Mum WILL suffer!
You have loads to offer this site, as far as advice is concerned, you don't get this far in your journey, without learning "a bit!" Like everyone that has joined the PSP world, at first we are novices, trying to hold back the tide, then we slowly let a bit of water come in, before the tsunami hits. The secret is to have the life raft ready to go. AND, if you ever discover when that is Kim, let the world know, 'cause I was certainly never prepared. Only asking and listening to the good folk on here did I learn to doggy paddle a bit!
Kim, you are spot on. You MUST take care of yourself so you can take care of your Mum. I almost paid the price before realising it. I was at cracking point when I was pushed to take a break. Only afterwards did I come to know the difference. If you can manage a break every three months or so, then do it. As Jeff166 states it's approaching 6 months. Do it now. You are no good to your Mum if you are broken. Take care of yourself and your lovely Mum will get benefit from that. Stay safe and keep smiling. ❤️❤️
Just one more thing, Kim, cos the good folks here have yelled the message from the rooftops and it's not just words for the sake of it - it's from their own experiences. These diseases are brutal and rarely, I would think, does a carer get off lightly, either emotionally or physically.
So, my one addition to the suggestions of regular respite; please think about setting aside time for a date night with your lovely husband, at least once a fortnight. Don't forget there's 3 of you on this journey; I know he's your rock and is supporting you uncomplainingly in the background, but he needs some Kim time as well.
You've done an amazing job caring for your mum and you will continue to do so, I have no doubt about that, but remember you are in the calm before the storm at the moment so now's the time to factor in some 'you' time. Get some plans in place sooner rather than later because things can change in the wink of an eye.
Remember also that you've offered much on this forum - you've shown that life can still be joyful for you and your mum, despite the daily challenges that we know you have, you just choose not to talk about it too much.
You do have a lot of care experience. Please don't put yourself down. You too are finding your way through this just as we all do. And, it isn't easy, as you say.
Being positive is a very good stance and it is one of the antidotes to low mood and concomitant feelings of not feeling able to cope. You exemplify this.
I would add that it is important that we also create a gentle space on the forum where people struggling with carers guilt, or feelings of failure and guilt from not being able to afford the resources they need, not to feel overwhelmed with a doctrine of positiveness on the board.
However I am also a little concerned that if we make too much noise on a regular basis on the board then this can accentuate some peoples sense of being a failure and they then might feel less able to post and seek support and advice. This is not aimed at you, it is a general comment. I feel the forum has drifted across to this less balanced culture.
Ok, this is all getting a bit silly now; a few weeks ago it was all about religion, now it's about the issues around showing too much positivity. When I was struggling with caring for Rod, too many dark and lonely dawns, brimming with anxiety, it was without doubt the positive posts that got me through and are still keeping me buoyant through grief. I am a positive person, I am drawn towards positivity. Positivity is the best medicine for our mental health, immune system, general wellbeing.
That said, I have great respect that you seem to have a genuine concern for the balance of the site and I do get it that maybe, just maybe, someone who is struggling with guilt as a carer, for whatever reason, may have their anxieties heightened due to upbeat posts.
So, how do we rectify that? How about you work with the the PSP organisation to see whether a 'quiet room' can be added to the forum, where those who are drowning and prefer to go there, can get the quiet support that they need. Others, who keep themselves balanced with a bit of the lighter/fun stuff can continue as they are, because I really believe that is just as important. We have to remember that many people get through the unimaginable because they are able to remain upbeat and positive - I know that cos I'm one of them. I know also that because of our wide ranging personalities, we can't all be like that.
You say , 'it's getting silly' and then go on to recognise the points I make.
You ask How do we rectify that?
By thinking about the impact our post might have and how we word it.
Kim, for example, if I may say, is now writing in much more sensitive and open manner and, doing it very well. Which is why I said this was not aimed at her.
There is a thin line between being positive and it becoming a 'cult' where negative things cannot be said and, then it can become a denial of the wider range of human feelings and experiences.
You make a valid point about people getting by with light entertainment. And some of that is great. But is this an entertainment forum? It's about balance.
My plea, with both of my postings is about balance. And, it is only a plea, it is not for me to say what people should and should not write. But, I can make observations?
There are many who feel the forum has become a little unbalanced and some even think it has even become derailed. Quite a number of major posters have simply walked away.
I decided to voice the concerns that have relayed to me by quite a number of people. They felt unable to post on this subject themselves. I can understand why.
I don't actually recognise the points, you make, I have used the word 'maybe' but I do respect you have an opinion, just like everybody else. I fully recognise this is not an entertainment forum but it is a place of support where lighthearted stuff should have a place, that's called survival.
I have made a suggestion as to how the forum can continue where everyone can post without fear of having to watch every word? I am aware of grief forums that have a quiet room for those who prefer to use that, leaving an area to post for those who gain greater support from the lighter stuff.
We have a choice, leave people alone to strike the right balance on the forum themselves, or do something constructive, as I have suggested, instead of making judgments about what is ok to post and what is not. You've made a very patronising remark to someone by saying she is now writing in a much more sensitive manner - I have never seen her write in an insensitive manner. You say you are not picking on someone - I'm sorry Kevin but that is a contradiction.
I'm not entering into anymore conversation on this subject but I will contact the PSP org next week to see whether there might be a solution to this that will give everyone the outcome they need. You talk about a cult - there is a real danger that this forum will be turned into a private club with a certain criteria to join if we are not careful.
This is not about whether you are right or I am wrong, this is about making sure this forum is a place where anybody can come regardless of how they portray the way they cope and I think the recent caffufle about religion and now being 'too positive' giving the wrong impression, could actually be very damaging to the first impressions of newcomers.
Which is perhaps why so many concerned voices are silent. That too you do not seem to recognise, yet their absence is rather loud.
As for patronising? I think not. Kim's posts have changed markedly. Not patronising , but perhaps rude. She herself made a comment about being a fst study.
You seem to be as if upset and I wonder whether you are posting from a 'position' rather than that of thinking about the reasoning I have put forward.
Yet, you again raise the issue of enertainment. Is that not a little contradictory?
This is not about covid, the issues I have raised predate that.
I say again. I am posting what many are only saying privately. Probably because they don't expect reason to be heard.
Do contact the PSPAssoc. Others have already raised their concerns and I expect you will get the same reply that they have. Also, Health Unlocked does not have the facility for separate rooms and we have never needed them in the past.
I have made my case for balance and sensitivity. Again I say, I am not trying to stop anyone posting their thoughts.
I am sorry if I have upset you.
I have nothing more that I can add and I have no interest in having an argument. I don't expect you do either.
My words are here for those who wish to consider them.
You needn't worry about looking over your shoulder this is my last post addressing the need to be sensitive to theirs needs, views and perspectives on this forum
Of course it's never easy to post against the flow - something I am not afraid of doing. As I have said, I will contact the PSP Org next week to see whether there is a way of resolving this. I am sure they can add a quiet room to the website - a win win surely?
The Health Unlocked forum technology is just not capable of that!
Do talk to them and get their views on these issues, others have.
I am not very impressed that you threw, "Of course it's never easy to post against the flow - something I am not afraid of doing." back at me. That bullishness is a sad response. I have been trying to reach across... You appear to be too angry to hear. Yet you have received an apology from me.
You have not once responded to the fact that good voices are leaving the forum. More bullishness?
So be it.
I have nothing more to say to you on this subject.
Not a sad response at all Kevin. I have a voice, I will use my voice, just like you are doing, why wouldn't I post against the flow if I have an opinion. I am trying to help resolve an issue - my voice has as much worth as any other and I certainly never ever set out to offend but if that's the way you interpret things then I am sorry.
Am I angry, not at all, and I do t know why you think that. If you knew me you'd know I don't do angry, things don't get solved with anger. Please do not presume I do not hear what you are saying, I hear you and as I've said before, I respect you have a view, it doesn't make either of us right though.
Lastly, I do not expect an apology from you, I am not offended in any way.
My first instinct was to stay out of this, but that's not my nature I guess. The more I thought about it, the more I agreed. I see exactly what you are saying. The more positive posts I see, the less I see from those who are struggling with their day to day realities of caregiving. There are times when we just want to wallow a little in the misery without a response that tells us how to be positive. I still remember telling people who I called trying to find help that I was looking for solutions not sympathy. I, too, see fewer and fewer of that kind of post on here. I find that sad. I've always appreciated the diversity on HealthUnlocked and miss seeing it.
There are plenty of (way too many!) articles out there on how to be a better caregiver. I read many of them in the beginning. I finally came to believe that they were mostly written by people who had never, themselves, been a caregiver and I vowed to never read another one. They all advise us to ask for help so I did. I pretty much found it to be nonexistent and realized that I would have to figure it out on my own. If I hadn't found HealthUnlocked, SmartPatients in the US and hospice, I'm not sure I'd have survived. The last thing I wanted at the time was one more person telling me to stay positive. A balanced forum is important for the success of a support site so thank you for being willing to take the heat and pointing that out.
Hugs,
Pat
Kim... Well said! Taking care of ourselves as well as our loved ones is a bit like learning to manuver a tetter-totter when we were children... getting on & off are not easy & finding balance is tricky to say the least. Sending hugs... Granni B
How true is this?! That dang teeter- totter!!Woah that brought a clear memory, and perfect truth! Hug accepted ... long night last night with Momma — going to be lazy day and doing a second run through of Downton Abbey ... one of my favorites. ((Hugs back))
I’m a little bit lost about the issues here. I do hope that I haven’t contributed to the drama. I have some really, really awful days! I think I admit when I’m down and when I need a shoulder to cry on. Maybe the painting, sewing projects and now the birdies are a bit too much? I’m so sorry if I have offended anyone. I take the good when I can, I try to live for today and I have a problem with conflict. That’s a coping mechanism for me I’m sure. Sometimes I think that I should find a bird group to share their/my story. Please let me know if I need to stop with the positive vibes I’m sending. It’s hard for me to visit this site when I’ve read that 3, sometimes 4 folks have succumbed to the illness all within the same week. It’s just hard and sad and makes me want to cry even though tears won’t come.
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Good bye for now.
Hurrah for the good days!
