Fern Support Group
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G'day all, thought I would kick start a support group for anyone who is struggling or needs some support. My reason for starting this is my partner of 25 years has a degenerative condition that has worsened over time and is now so bad she is bed bound in the lounge room and I care for her. Can't say I ever thought I would see my wife in a wheelchair and needing me to help clean her etc.
I know many of you have lost partners, parents etc and I am curious how you kept your mental health healthy when watching a loved one's health fail.
The biggest thing we miss is the ability to do things like travel, bushwalking etc. It is only when your body fails that you realise how important moments and experiences are. Material things, money etc are not important when you can't do anything. For those with a healthy partner make sure you give them a big hug and surprise them with a trip somewhere.
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@chimoaus said in Fern Support Group:
G'day all, thought I would kick start a support group for anyone who is struggling or needs some support. My reason for starting this is my partner of 25 years has a degenerative condition that has worsened over time and is now so bad she is bed bound in the lounge room and I care for her. Can't say I ever thought I would see my wife in a wheelchair and needing me to help clean her etc.
I know many of you have lost partners, parents etc and I am curious how you kept your mental health healthy when watching a loved one's health fail.
The biggest thing we miss is the ability to do things like travel, bushwalking etc. It is only when your body fails that you realise how important moments and experiences are. Material things, money etc are not important when you can't do anything. For those with a healthy partner make sure you give them a big hug and surprise them with a trip somewhere.
jesus mate, the most useful thing i can say is thats funking shit and your a top bloke for doing whatever you can
i dont know if this is helpful or if this is really one of those time the wife tells me about where she didn't want anything other than to vent...but im a bloke so i'll go ahead anyway and hope for he best
we go for a walk every morning along the beach...and every morning we go past a couple and the woman is in a wheelchair, and what i find cool is while we walk along the path, they have a wheelchair with these big "beach tires" and they roll down the sand, every morning rain hail or shine they're out there "walking" their two dogs together on the beach
I dont know if this is something you can do, i know everyone’s situation is different, but hopefully it can give you faith there are things you might be able to keep doing together
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@chimoaus Sorry to hear that. Not sure I can say anything of benefit. Kia kaha.
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@chimoaus kia kaha to you and your partner. That is super hard stuff and not something I have much personal experience with. I guess you've been looking into support networks and other places you might be able to tap into support or technology to help get you out and about?
In the most general terms it'll be important for you both to hold onto your sense of self, as best you can. Loss of agency and autonomy mess with our heads, and I hope you can get support (as appropriate) for caring for your partner. You need to look after yourself alongside looking after your partner.
All the best mate and sing out or msg if you need a yarn or a vent or whatever.
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@chimoaus fark, that is rough bro!
Mrs TR very recently had a health scare, fortunately things worked out, I know the month or so from diagnosis, surgery to waiting for results was awful, so I can only imagine what it must be like having those fears realised!
Dont ever be afraid to reach out!!
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@chimoaus Jeezuz mate that's tough. Feel for you. Brings back some bad memories.
I'm not sure where you live (or personal circumstances) but there are undoubtedly support networks out there both in terms of material support aids etc and also mental support. My advice would be to not try and take on everything yourself. You need help (as you have clearly recognised) so take whatever is available that works for you.
I didn't and now know that I should have. It is not possible to do everything that you want to. Create time ands space for yourself - it will be better for both of you. Also respite care. You'll hate the notion but it can help.
It's a fucking tough gig and unless you are a saint you will snap at times. If this happens don't beat yourself up. Like any long journey you can only take it one step at a time. there are still moments you can enjoy together so cherish them.
You do need to be a bit selfish at times - it's in both your interests. Find what works for you to unwind and make sure you give yourself that time. Reach out and rely on friends and whanau.
Kia Kaha. Really feel for you.
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@chimoaus no idea where you are but if in melbourne just say the word if you'd like a beer or just to silently watch some rugby with someone
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@chimoaus sorry to hear and I get a bit emotional just thinking of your predicament, it is terrible. Reach out if you just want to chat, whatever helps
The least I can do is honour you wish and take my wife somewhere
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@bayimports said in Fern Support Group:
@chimoaus sorry to hear and I get a bit emotional just thinking of your predicament, it is terrible. Reach out if you just want to chat, whatever helps
The least I can do is honour you wish and take my wife somewhere
I'll honour his wish and take your wife somewhere as well
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no words to add really as i lack the basis of understanding. Just the same as the others, make sure you always have someone to talk to honestly about how you are doing. The face you'll have to show your wife doesn't have to be the one you show everyone.
I wish you all the strength in the world.
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@mariner4life said in Fern Support Group:
@bayimports said in Fern Support Group:
@chimoaus sorry to hear and I get a bit emotional just thinking of your predicament, it is terrible. Reach out if you just want to chat, whatever helps
The least I can do is honour you wish and take my wife somewhere
I'll honour his wish and take your wife somewhere as well
lol she would probably enjoy that more
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@bayimports said in Fern Support Group:
@mariner4life said in Fern Support Group:
@bayimports said in Fern Support Group:
@chimoaus sorry to hear and I get a bit emotional just thinking of your predicament, it is terrible. Reach out if you just want to chat, whatever helps
The least I can do is honour you wish and take my wife somewhere
I'll honour his wish and take your wife somewhere as well
lol she would probably enjoy that more
lol you're only saying that because you don't know me
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@mariner4life said in Fern Support Group:
@bayimports said in Fern Support Group:
@mariner4life said in Fern Support Group:
@bayimports said in Fern Support Group:
@chimoaus sorry to hear and I get a bit emotional just thinking of your predicament, it is terrible. Reach out if you just want to chat, whatever helps
The least I can do is honour you wish and take my wife somewhere
I'll honour his wish and take your wife somewhere as well
lol she would probably enjoy that more
lol you're only saying that because you don't know me
nah, I was only saying that because I was joking and I cant see her doing that anyway
...you're right though I dont know you
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@chimoaus Kia Kaha bro. Whilst it’s never easy reading about these sort of things, there is something to be said about sharing your experience with others - that in and of itself is a pretty brave thing to do.
Sure we live in a world today where people are putting more stuff about themselves on social media like how they peeled their orange today or which socks look better worn on a Wednesday… but this is very real and personal experiences.
It’s not always easy to see the positives or valuable life lessons when you’re in the thick of a very challenging time, but I was taught that they are there. So that’s something worth holding on to - whether those positives will be for you, your extended whanau, friends etc.
And like @mariner4life said, if you have someone close to that you can talk to face to face and be real with, I found that a great help when going through a hard time.
If you don’t, then I hope the Fern can be a source of some help. The jokes are cheap and they also come for free….
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Possibly relevant; I've posted in the past that my Mum has Alzheimer's. Which is now very much Stage 6 mentally, and physically is starting to catch up far too rapidly this year. Including a melanoma diagnosis now in the mix as of last Wednesday. Some ramblings that touch on what others have said about keeping...
@chimoaus said in Fern Support Group:
your mental health healthy when watching a loved one's health fail.
... and acknowledging that the following is often much easier said than done...
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Take any appropriate in-home help, support group help, etc where possible/needed/available, and
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Feel no guilt about it at the time. Because among other factors...
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That does free up your head space a bit to spend time a bit more at the 'more care, not quite as much responsibility' end of the spectrum.
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Probably the easiest said rather than done bit: focus on the things you can still enjoy together, even if it is 'just' laughter, or music, or going for a walk with the wheelchair or a local drive - it's at least a small change of scenery, or escapism. In terms of mental health, I'd possibly be in care or a psych ward myself if I dwelt for too long on everything/everyone that my Mum has forgotten, now can't do, and many of the Alzheimer's-associated paranoia and delusions, etc. But...
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... she can; still laugh often at silly things ("see ya Mum, remember, no wild parties in here", "genuine laugh - chance would be a fine thing"), and loves hearing about how the family is doing (if names and context have all but gone), looking at old photos of where she grew up, and going out in the car even if just for a local drive to nowhere. Small mercies, but I've found it does help mentally. Hopefully on all sides.
Kia kaha.
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@antipodean said in Fern Support Group:
@chimoaus Sorry to hear that. Not sure I can say anything of benefit. Kia kaha.
This sums up my thoughts exactly.
Kia kaha
