Are you Caring for a Partner & Parents with Dementia/Alzheimers

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  • iserbrown
    iserbrown Member Posts: 5,728 ✭
    Have a sister with sensitive skin.  Dermatologist told her to use Oatmeal soap.....she's much better!  
  • arpie
    arpie Member Posts: 8,123 ✭
    Bloody 'autospell' creates STUPID COMMENTS!!!

    She see to out oatmeal flakes in a stocking ...... should have been .....She used to use oatmeal flakes in a stocking
  • Locksley
    Locksley Member Posts: 974 ✭
    I used to only use Oatmeal flakes for Anzac Biscuits and Porridge but my pampered pooch has sensitive skin and has a sensitive skin shampoo and vet told us to soak oatmeal flakes in water and drain and then his becomes his conditioner.   Much cheaper than the small bottle of conditioner for him at $25.00!   I just have to be organized a bit before we decide it's bath day.  
  • arpie
    arpie Member Posts: 8,123 ✭
    This is a very honest description of what being a carer means .....  

    It is tough, and it will only get tougher 


  • June1952
    June1952 Member Posts: 1,935 ✭
    @arpie.  Can you pop that onto the Carers Corner private group as well ?
  • arpie
    arpie Member Posts: 8,123 ✭
    Already there! @June1952.  ;)  It’s good, isn’t it?
  • June1952
    June1952 Member Posts: 1,935 ✭
    Thanks, @arpie.  A great spot for it as any new Carers Corner group members will feel so much better about their lot.
    Yes, it is a good one.
  • Kattykit
    Kattykit Member Posts: 252 ✭
    @arpie, when I was on capecitabine I used Vaseline on my feet which seemed to help better than all the fancy creams, try not to let him go barefooted too often either. So good to see his markers on the way down. 
  • arpie
    arpie Member Posts: 8,123 ✭
    Many thanks @Kattykit - I've been using Dermeze Treatment Ointment which is based on Vaseline with Parafin & a few other bits in it .... and then put socks on him to 'hold it in' .... I'm really enforcing the 'no bare feet' even around the house (let alone outside when he must wear shoes as well) as he is a diabetic too & has some neuropathy on his feet already so can't always 'feel' when he has a cut or an injury!  
  • arpie
    arpie Member Posts: 8,123 ✭
    Woohoo!! Hubby's markers are down again this week! One is even in the 'normal' range now!! The other one is still 100+ over - but has come down heaps over the last 3 treatments!!  So our Onc (and us) are VERY happy!!

    The foot was looking REALLY GOOD too .... but then it started peeling yet again (about the 3rd peel now over the last 3-4 months!)  So we are playing around with the Capecitabine tablets to try & reduce the peeling, specially now that the  markers are going down.  He only took 1/2 the tablets last treatment (after the infusion) and the markers STILL went down, so that is good to know!

    The good news is that he is not in pain or discomfort ..... even with the foot (only one of them!) looking like this.  It went like this the first time he did chemo too back in 2010 - and the toenails never really recovered.

    We've tried Moogoo, NS8 & NS21, Cetaphil, Sorbolene, and a couple more .... any suggestions??


    most of the front of the foot is peeling now ...


    It destroys the toenails too :(   I clip off the dry scaly skin and then smother it in cream or ointment .... 


    He has another PET Scan at the end of the month .... to compare with the one in Jan. That will be very interesting!
  • FLClover
    FLClover Member Posts: 1,573 ✭
    The foot looks a bit painful @arpie 🙁, but fantastic news about the markers!!! 🥳🥳🥳
  • arpie
    arpie Member Posts: 8,123 ✭
    No pain with the foot, thank goodness @FLClover ... a real bonus.  It is Just ugly and if he pulls the skin off, it can rip the flesh ... THEN it becomes painful, so I keep snipping the dry ‘tags’ off and putting ointment on to try and keep it moist ... 

    yes, ecstatic about the markers!  Now we can play with the meds levels  to maintain the markers and reduce any side effects - hopefully including the foot!  Weird that it is just the one foot tho!
     
  • FLClover
    FLClover Member Posts: 1,573 ✭
    @arpie it is very weird!! 😳. Your hubby’s foot is worse than mine, but what I have is similar. And yes, only hurts when I try to remove the dry parts and end up ripping flesh. Then it’s very painful. I also moisturise with most of the creams you mentioned. 
    Keep up the good work! Your determination has got you to this point where he is now stable 👌🏻😊
  • Caz1
    Caz1 Member Posts: 382 ✭
    edited May 2021
    Oh boy, poor fella, that foot looks sore  :'(

    Fantastic news about his markers tho! Keep it up!

    Caz x
  • Kiki_Dances60
    Kiki_Dances60 Member Posts: 40 ✭
    @arpie @June1952 I feel for you both dealing with the effects of this disease on your life partners. My heart goes out to you. I’m in awe of your patience and care.
    my mum is 88 and has quite advanced vascular dementia. My sister and I were concerned about her eating habits a couple of years ago (we were discovering food in the fridge well past due by dates, mould, and her cupboards were so full they were impenetrable). She had a fall at the start of Melbourne’s first lockdown and ended up in hospital. No broken bones but severe pain and pneumonia! She returned to her home between lockdowns and we arranged 24/7 carers to keep her safe, fed and entertained. She doesn’t feel thirst, hot or cold, her short term memory is shot, she doesn’t remember she has a carer most days, but she enjoys a coffee and cake at the café and going to concerts (now she can), but her mobility is deteriorating.

    I wanted to understand more about the disease and its progress and found a free online course called Understanding Dementia by Wicking Dementia - part of uni of Tasmania. It has helped. They are running another in July.

    Last year my sister came across a series of helpful videos on YouTube- Dementia Careblazers - looking after your loved one with dementia. Really practical, kind tips to help you in your interactions. 

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