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 that is bloody tough mate
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@chimoaus kia kaha mate, this place can have some heated discussions, but people really look after others with care.
So lots of love fella, hang in there. Tough times
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Yeah, kia kaha. That's not a great situation and obviously difficult to offer advice on.
Keep talking though. If this is where you feel comfortable venting then keep at it.
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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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Really tough break dude.
I hate the human body and it’s frailties. Life is shit sometimes. I hope you’re doing as ok as you can under these circumstances.
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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
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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.
Not sure what to say buddy, except you’re lucky to have each other.
Does your wife have anyone she can talk to? As bad as it is for you it must be worse for her.
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Thanks all for the comments, I appreciate it. I agree about trying to appreciate what we can still do together and not focusing on what we can't.
On a lighter note I never fucken realised just how much work it takes to cook and clean.
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
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@JC said in Fern Support Group:
@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.
Not sure what to say buddy, except you’re lucky to have each other.
Does your wife have anyone she can talk to? As bad as it is for you it must be worse for her.
She has supportive family she can talk to on the phone which is good. She also has a nurse that calls as well. Like most people she doesn't want to burden anyone which is silly as everyone wants to help.
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Chimoaus,
One of my daughters reminded me recently how I had told her long ago that she was the most important person in her life, not her new husband, not her new baby, … . I recall she was hurtling into a new business, commencing at Sydney University, settling into marriage, and being a new mother. She was horrified, could not believe I would advise such selfishness.
She was grinning as she told me (at 42 in 2019) how it was not until life developed more that she remembered the rationale – “Eat wisely, sleep well, withdraw to enjoy the things that please you, have your family share the load … if you are not caring properly for yourself you cannot reliably deliver to others who are important to you.”
We were eating lunch mid-week – “Dad, I see you are at home-home (Sydney) this week, I will collect you at 10, I want to visit the Art Gallery.” and I was pleased that she had heeded something a wise man had advised me.
Further, I have long grasped at something Winston Churchill said, about dealing with unrelenting pressure:
“This is the lesson: never give in, never give in, never, never, never, never—in nothing, great or small, large or petty—never give in except to convictions of honour and good sense.”
Up on your feet and box on, chimoaus.
You are young, you will adapt. I raised my son and three girls throughout their teenage years, alone, while I was at the top of the tree in my corporate career – it can be done and you will be proud of your achievement.
Just look around you here – voices aplenty happy to have a word when you need it.
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@chimoaus said in Fern Support Group:
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
Several Ferners scurry to update their resumes…
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@chimoaus said in Fern Support Group:
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
i hope you like dill
and cabbage.
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@mariner4life said in Fern Support Group:
@chimoaus said in Fern Support Group:
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
i hope you like dill
and cabbage.
well if he is recruiting Polish from the fern then its probably more like Kransky
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@bayimports said in Fern Support Group:
@mariner4life said in Fern Support Group:
@chimoaus said in Fern Support Group:
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
i hope you like dill
and cabbage.
well if he is recruiting Polish from the fern then its probably more like Kransky
lol
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@bayimports said in Fern Support Group:
@mariner4life said in Fern Support Group:
@chimoaus said in Fern Support Group:
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
i hope you like dill
and cabbage.
well if he is recruiting Polish from the fern then its probably more like Kransky
Cheese kransky
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@canefan said in Fern Support Group:
@bayimports said in Fern Support Group:
@mariner4life said in Fern Support Group:
@chimoaus said in Fern Support Group:
I have suggested a Polish exchange student might be a good idea, let's hope that gets the green light.
i hope you like dill
and cabbage.
well if he is recruiting Polish from the fern then its probably more like Kransky
Cheese kransky
speak for yourself, some of us shower
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Well covered by everyone else, sorry to hear about your wife.
I hope The Fern and it’s community help you let of some steam, and if we can help in any way just ask.
Lots of hidden expertise here, and genuinely nice people.
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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.
My heart bleeds for you Mate. Unfortunately I've been there and it's soul destroying. People would always ask me if there was anything they could do and I just wanted to say "can you please make this all go away". It's hard to enjoy anything in life because of this constant reminder that hits you like a train every time you wake up in the morning. But I think you have try to take some time for yourself and not shoulder everything. You'll go mad otherwise.
Find things that bring you joy and make sure you do them. I found exercise helped and rugby (when the Canes and ABs were actually good) made me happy. Also talk and vent as much as you can. Don't hold it all in. Beers with mates help big time.
I think most importantly, cherish every day you still have together. Say everything you want to you say. Thank her for the joy and happiness she gave you. Don't leave anything unsaid.
I'm so sorry Mate. PM if you want a yarn or any assistance. Stay strong.
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Blimey that's not cool. Not cool at all.
Not much advice I can give, but those that do go through tough things in life I know find a lot of solace in the company of others experiencing the same thing. Although I'm sure TSF will be a support network, a closer one of people with the same issue will do you wonders.
All the best mate, thoughts are with. Might go and chat to the wife again now after our stupid argument the other day ....
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@chimoaus it occured to be we could/should also be proactive in checking in, how you going this week?
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@Kiwiwomble Thanks mate, I appreciate the concern, we both watched the rugby together and it was a real highlight seeing her get excited by the boys performance
It's a bit like groundhog day to be honest, good days with bad and just focusing on the good. We are in a bit of a holding pattern at present and I'm just focusing on doing what I can with work and caring etc. Cheers. -
Really sorry to hear that, mate. Glad you felt able to share here.
I have a close friend who went thru 10 years of seriously awful, lifechanging stuff happening to her husband & son and I've often told her I marvel at how she got thru it. Her response was that opening up and just talking to people about her situation (and sometimes venting) helped enormously and was probably key to getting her thru it.
Look like you've figured that out already. You'd be amazed at how kind people can be when you ask them to listen when you need to open up.
Kia kaha.
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Thoughts are with you both
Enjoy the little moments
They’ll be massive down the line
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@chimoaus said in Fern Support Group:
@Kiwiwomble Thanks mate, I appreciate the concern, we both watched the rugby together and it was a real highlight seeing her get excited by the boys performance
It's a bit like groundhog day to be honest, good days with bad and just focusing on the good. We are in a bit of a holding pattern at present and I'm just focusing on doing what I can with work and caring etc. Cheers.its something ive always wanted Mrs Womble to get into sport so we could really enjoy it together, she'll come to live match for the spectacle...but wont sit down and enjoy a game on tv
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@Kiwiwomble make her a canes fan, get her some skin in the game! Bonesetta is a canes fan and I nominated the rest of her family with other super teams, makes it a bit more fun. Of course her mum is the sith.
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@Bones said in Fern Support Group:
@Kiwiwomble make her a canes fan, get her some skin in the game! Bonesetta is a canes fan and I nominated the rest of her family with other super teams, makes it a bit more fun. Of course her mum is the sith.
ive tried..she gets annoyed and says if she has to pick a team she'll pick her own...thats how she ended up "supporting" geelong in the AFL and Chelsea in the football...pure spite and only mentioned them if i push things...she actually from chch so i dont want to push my luck and end up married to a crusaders fan
