Are you Caring for a Partner & Parents with Dementia/Alzheimers
Just wondering how many of us are actively caring for partners or parents with dementia/alzheimers? If there are enough interested in doing so, we could ask the mods for our own group, to discuss the very real and personal issues that affect us, as their carers - and also how it is affecting/impacting our own recovery. Tips & tricks on how to cope, would be really good - and just a secure, private area where we can vent or celebrate small wins. For those who are incontinent, for example, apparently there is an 'Incontinent Nurse' at most local health facilities, that can arrange an Incontinence Care Package that is subsidised (at little or no cost to you) but you need a GP referral to kick it off. 'Cos the cost of pads & pull-up pants costs a HEAP - 'specially when going thru nearly a pack a night! :( Hubby has recently become totally 24/7 incontinent. It is a life-changing event for both of us. I haven't had a full night's sleep without 4-5 interruptions for weeks now. He had an ultrasound on Friday & I should get the results tomorrow - and am hoping that something can be done to mitigate the severity of it all. However, from the questions the radiographer asked, I am a bit concerned it won't be 'good'. :( It is such an insidious disease - I call it the 'living death' ..... you have to watch the person you love slowly change in both physical and mental abilities until they are almost unrecognisable. There are funny times too ..... I never know what I am going to find in what cupboard, anywhere in the house!! Stuff that should be in the fridge is in the cupboard & the cupboard things in the fridge ...... I found my electric toothbrush zipped in his Hearing Aid pack yesterday ..... SO .... Hubby (mid 80s) was diagnosed as Mod/Severe dementia 5 years ago (tho I'd been noticing silly decision making for some years prior to that) & is slowly getting worse. His twin brother is further along than him (he stayed with us for 4 days 2 weeks ago & it was a bit like herding cats!) Their older brother died from it in the USA some years ago, so it would appear to be genetic. His mother died when he was a baby & his father was only in his 60s when he died from excess of booze & smokes, so we don't know if they 'would have' developed it .... I've recently signed him/us up to My Aged Care, but the bloke on the phone didn't think he needed assistance at this point in time (after asking him 3 simple questions, in particular that I would be speaking on his behalf, that just required 'yes' for an answer - and I was prompting him when to say it!) Bloody DIPSTICK! I am very interested in hearing the highs & lows of your own dementia carer journey .... and maybe we'll be able to help each other. xx
husband not coping with my physical appearance since failed reconstruction
Hi I had a mastectomy and immediate reconstruction on breast that was prev radiated - I was aware of risk might fail and unfortuantely that has happened. 'I am left with a mound with nipple and v confronting to look at as sort of collapsed on itself. My husband is really struggling with my appearance and cant bear to look at it. I think he has been in denial and now cant avoid fact.. he is quite angry and tells me is more that he is put off/disgusted by fact have put on weight(about 8kg) that fact have no breast. Does anyone know of a support group for partners/husbands or any ideas how I can support him? He is v resistant to counselling....:(
Breast care support nurses/ McGrath breast nurses - Do they follow through?
Has anyone actually received ongoing support from any of these nurses? My experience was in a private hospital. Once I was over the immediate surgical recovery, and without my reaching out there was no follow up. I had thought before my journey, that these nurses helped through all of the stages of this cancer treatment. Ie Surgery, Chemo, Radiotherapy etc. I phoned a McGrath nurse that came up as local, on my internet search. She was working at a public hospital, in outpatients. Our conversation was interrupted several times by her other work. This wasn't very helpful. How and when have others seen these nurses? How frequent? How easily? How helpful have you found them? Some of you refer to them often in your posts.
Newly Diagnosed 18/2/2020
Hi Everyone, my name is Lois and my life got bit of a shock last week when the doctor said "It is Aggressive, Invasive Breast Cancer". The emotions went into hyper drive and I left his room and promptly threw up in his garden. Luckily, my husband was there for that much needed clean up and cuddle. My "Lump" had been there for over 5 months and as I have Lupus, merely thought it was a torn chest muscle that was taking forever to heal. Unfortunately it wasn't. Instead it is a Stage 1, Grade 3 estrogen receptor cancer (I think that is what they said!!) located in the upper quadrant of my left breast on my chest wall. The lump is nearly 30 mm... Yesterday, I met with the Specialist for the first time and my Breast Care Nurse - both very calm, methodical, easy to approach and allowed me for the first time in nearly 3 weeks to let my breath out and come home with a positive outlook - even though I know the months ahead will shake, rattle and roll me to exhaustion and beyond. At the moment, the decision is to take out the lump and relevant lymph nodes then radiation therapy. The view to full removal of both breasts will be considered once I have done healing....especially as "we" are unsure how the Lupus will react as I have been in constant flare up with a myriad of symptoms for nearly a year now. The whole thing of rejection of breast tissue for reconstruction etc needs to be considered at length and with advisement of specialists. I am alternating between being scared and rationally calm. The hardest bit of this news, was having to tell my children and watch the sheer horror cross their faces. That took my breath away. So...that is me. Trying to find a sense of positivity amongst the fear and monumental freak out sessions since I was told the news.
Husband not coping
Does anyone have any advice dealing with a husband who is not dealing with a diagnosis? He’s leaning on me for emotional support and has spent most of the holidays drunk (he was a heavy drinker before) but he just sees the diagnosis as using drinking as a way to cope. I’m trying to stay strong and recover from chemo while caring for our daughter. I’ve been dealing with things pretty well but his outlook is just causing tension and frustration. I understand he’s doing it tough but I need support now. I nursed him through a cancer diagnosis 5 years ago but he says he can’t handle it because it’s me. Sorry for the rant. Does anyone have any suggestions?
Sydney support groups - northern beaches
Hi everyone i am new to this and hope i am posting correctly. I am a 47year old, mother of two, and was diagnosed while working in the U.S.A on 21 September 2017 with rare & aggressive stage III inflammatory cancer of my breast & lymph nodes. I returned home that weekend and started chemotherapy the week after, and i am in the final stages of that before i have surgery, radiation, and then look at other options once my pathology is clear post surgery. It has been a challenging and tough time, and nothing i knew, heard or understood could have prepared me for what i have been through with chemotherapy and the side effects impact, never mind the diagnosis. I am looking for some local (happy to travel any direction up to half hour) support groups. If anyone has any suggestions or can redirect me to where these are on this website, i would appreciate it. Thank you :smile: Trace
Big Thank You! 💝
@Afraser @arpie @kezmusc @iserbrown @AllyJay @Blossom1961 @Sister @Shellshocked1 @mum2jj @nikkid (sorry if I’ve forgotten anyone) I’d just like to give a massive shoutout to these very special ladies. From the moment I joined, I’ve felt so supported and cared for thanks to all the practical and wonderful advice these ladies are always willing to provide to lost newbies and older members alike. This is very important, as sometimes this is the only proper support we can get. Most of the time I don’t even need to create a post, as I can just read through all the helpful tips they’ve already provided countless times to others. I’ve realised that at the beginning, when we’re all terrified and confused, we go to sites like these for help. But once we’re past the initial stage and we become more familiar with it all, and somewhat better, we tend to just move on with life and not be so regular on sites anymore. It just happens naturally and unintentionally. However, these ladies have stayed on this site for years, literally, and continue to very selflessly give advice and comfort to ladies (and men) whenever they need it. That’s VERY SPECIAL 💖, and I hope you ladies understand how much we appreciate it. Lots of love to you all 👏🏻👏🏻👏🏻🙏🏻🎉🤩👑 ♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️