Yesterday I had coffee with a friend while C was being looked after by our regular Crossroads sitter. While I was out the district nurse called again, whey hey! she bought a packet of 28 pads. She told Sarah she had found them in the cupboard at work. They won't last 12 weeks but it is good to know she was thinking of us.....and they are the correct size. It's amazing how little things can make me so happy.
Have a good day folks, or night for those down under.
X
Hi NannaB, Know EXACTLY how you feel, been there. It is sad that the thing that makes you happy, pads for poor Colin's bottom. What have our lives turned into?
Lots of love
Heady
I am so happy for you. In 12 weeks there should oughta be a whole new shipment!
Like Heady said, it;s these new things that make us happy....We would have never looked or needed to look before PSP but now that our needs have changed so have our happinesses....Keep looking and finding them, NannaB
With all joy , AVB
Thanks AVB. I hope your day is good today.
X
So far no good....Last yesterday was so good and last night was so hard that I could not resist the brew. Now I am hung over damn it!
My daughter wrote me an email telling me of her feelings toward her dad and PSP. Since the diagnosis, it has been very hard for her to talk to him...and since I a am such an idiot , it's always hard to talk to me...(need pads for my mouth). But yesterday we talked (emailed) and last night I drank. ...and today...well I just woke up ,,,i'm pissed of at myself...oh thats enough...I still am happy for you....
Happy padding...B just got up. good day
AVB
Oh dear. Sorry you had a bad day and hope things get better. You're not an idiot, you are a tired, exhausted carer and no one who isn't, even family members however close, can ever understand the emotional and physical strain we feel. I didn't before my husband was diagnosed. My dad was my mum's full time carer. I went to see them and help nearly every day after work and sometimes before work. I found it hard but nothing like my dad must have felt. I had work to distract me, could go home and watch TV without interruption and have a good nights sleep.
I'm sending you a great big hug....hope you get it.
X
Thank you, Nana Got your hug. We are definitely the between generation. What taking care of our parents while taking care of our own children. Oh well today is a new day alcohol free. B had a good night sleep is still sleeping and dog is ready to walk so my day goes. Hugs back at ya
AVB
Nana...there were days ( long ago ) when a box of diapers would not have made our day...funny how life changes
us...but what the heck,we are tough ,remember the song,FROM BOBBY SOCKS TO STOCKINGS,who would have forseen this...love Rollie
Hi Rollie, it doesn't take much to get me excited nowadays. It's good to hear from you. How are doing?
X
Hi Nana,some days ok others poorly,both my sons live away and the old homestead where we came for rest for Madeline is a place I left in 1962 so there are very few people here I know,I will make it,we caregivers are pretty tough ,sleeping is now a big thing ,I never realised how beat I was...good to hear from you ,take as much care of yourself as is possible with this lousy illness ,love,Rollie
Bless you Rollie, when you have caught up on years of little sleep and physical and emotional exhaustion I hope you can get out there, join an interest group or club, make new friends and start living a full life again. We know how short life is. Make the most of it.
Take care.
Love Bev AKA Nanna B
X
Bev...since 14 years of age with Madeline,I,m not sure how anything works when she is not part of my life ,I today still partly see her as being here,mostly b4 this illness,hopefully things will work out,love Rollie
Don't forget Rollie, you had a strong role in making that life with Madeline. You were Madeline's life, towards the end, so you will be able to carry on, because YOU have been use to making things happen.
Sending lots of love and hugs
Heady
Hi Heady..time will pass,love to you,Rollie
Never even knew or thought about 'bottom arrangements' before Bens bombshell diagnosis of Psp. Think I will know all about them by the time he needs them. Something to look forward to then! Take care. Xx
Aspiration pneumonia again
Well heck..travelling the path again
Nurse Georgepa panicking 
Anyone with the rare dementia service in UK and with the district nurses what's your experience? 
