Are you Caring for a Partner & Parents with Dementia/Alzheimers
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What a roller coaster!
Sending you a virtual hug x2 -
You’re so onto it @arpie, good on you!! What a wonderful wife and best friend you are to him 😊♥️. I hope you get the treatment you need at a much reduced cost, and that it helps 🤞🤞. Quite annoying that so many of them are not available here in Aus, but there’s not much we can do about it. You’re being very proactive anyway 👌🏻. Hope you’re taking care of yourself too 💟
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Thanks guys - it's just what ya gotta do. You would do the same for your loved one.
He would be cactus trying to do all this on his own.
At our first meeting with our Onc for hubby, I gave her a list of his achievements as a top triathlete (including winning Triathlon World Championships just 4 years ago at age 80.) I also gave a brief history of his running career over the last 65 years, representing the 4 countries that he's lived in (before he took up Triathlon & represented 2 countries!)
This was so she didn't just look at him just as an 'old man' who "wasn't worth salvaging" or working hard for. His condition is also very rare - she's never seen another man presenting with his type of cancer (Diffuse Signet Ring adenocarcinoma) and the spread that he has - so she is trying even harder to make a difference - as it may also help her in treating someone else further down the track.
She then googled him and was in awe of all his achievements - and is being very proactive in his treatment .... He's been interviewed & documented by the ABC, a live interview on one of the Sports Radio Stations, written up in the Seniors Magazine, had articles in our local rag numerous times and was the 'feature story' in our newest Town Rag (as all the other papers stopped printing, so a triathlon buddy started her own local paper instead!)
Many thanks for all the hugs - I am going 'ok' - we are not at the stage where we need in house help or anything ..... and I can still duck out for a fish now & then & leave him on his own for a few hours - tho will be monitoring him closely over the next week to see how he goes after the chemo. In 2010, he used to get very weary at about Day 4 & put himself to bed for a couple of days ..... but this was just a 40% dose to see how he goes first up .... next one may be stronger, depending on how he goes.
If anyone asks him 'how are you'? He just replies "I'm FINE!" Tho the other day mentioned to me that apparently he had some sort of disease ..... so I just said, "Well you're doing OK just now, so keep doing what you are doing!" xx7 -
Wow sounds like you got yourself a fighter!
Glad you can duck out for a fish now and then
Caz x3 -
@arpie I just googled him too. Wow!! So many achievements, and such perseverance throughout his life. Incredible! He and his brother look so happy after having competed, and might I say you two make a very handsome couple ☺️😍♥️. Lovely to read about his story and both of your determination 🥰2
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Many thanks to @Giovanna_BCNA for kick starting a new group for Carers with Chronic diseases ..... you should have received an email about joining the group if you’re in this situation or would like to follow it. Xx
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Any members who are also carers are encouraged to join the new group. I just joined. Look forward to some interesting discussions to help us all get through. I was speaking with ladies yesterday who care for grandchildren - one with Asperger's and the other Downs Syndrome. We all have similar issues at some time or other and it is good to find out new leads, treatments, practical solutions etc.
Thank you @arpie and @Giovanna_BCNA for starting the private group.5 -
Is there a link we can add to the side bar (with the other groups) so that other members may be able to join, thanks @Giovanna_BCNA ? I'd like to start chatting with others in the group xx
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Good idea, @arpie
@Giovanna_BCNA - Also, can the title of the group be a bit more simple ?
Perhaps then an invitation on the main site for Carers to join.
Please note that the group is open to any member who is also a Carer - not necessarily caring for someone with Dementia.
Thanks2 -
Yes, absolutely - open to all carers, not just those with dementia - and also open to those who's loved ones may have passed away - as the knowledge you'll have gained will be invaluable to all of us facing that uphill climb.
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Woohoo. Hubby’s markers are down heaps this week!! The first couple of blood tests had them going up 50-80 points a time .... first time they are lowering! The Lower dose tablets had him MUCH happier in himself and not as exhausted after his previous treatment.
His angry red, peeling Feet are still an issue tho
His next PET scan will be after next treatment now, not this one. He Didn’t put himself to bed at all after the last treatment and is bright and bushy tailed this morning. The Onc is very happy with his progress! So it looks like we’ve got the dose ‘right’ for his quality of life, yet hopefully containing the cancer.
He Started the oral chemo again today (for 2 weeks) after the infusion yesterday ... he had 4 days ‘off the tablets’ last treatment after the infusion .. so if he gets fatigued/zonked/not happy again, we’ll know to cut that back again.
I am just so very happy with how things are going just now.
Has anyone else had hand/feet syndrome from chemo, where the skin gets very red and inflamed, thickens and then peels (his whole sole of his foot has peeled, so now needs to toughen up again ...). We’ve tried various creams (NS21 was terrific initially on the skin and the NS8 Heel Balm was great for his heels and soles) and am now trying Moogoo full cream moisturiser ... but I am wondering what’s worked for you? This will be an ongoing problem with the Capecitabine tablets ... I may even start a new thread just on this subject as I am sure there will be plenty of members suffering from it!
take care, stay well xx3
