I think that’s what I miss more than anything- conversation! We used to watch tv news and comment and discuss all sorts but like you we can sit ages with no conversation. I miss passing on information about family etc cos it doesn’t usually register. Selfishly, I feel cheated that I’ve lost my hubby and best friend
How have you been last couple of days?? Been fairly quiet here thankfully just the usual confusion and getting sorted at bedtime. If OH goes before me then he’ll be up and down stairs a dozen or more times but I really don’t want to go to bed at 7.30!! Memory cafe tomorrow afternoon which we both enjoy x
Hi we are ok ,if a little stressed out with this windy weather. This FTD is so complex no 2 days the same ...I mean how do people cope ..And I know we are very early into this long and distressing journey
You said it - BREXIT!! No wonder I don’t understand it all with the constant muttering at my side!! Our tv viewing becomes more and more limited to things like blue planet, countryfile, etc. Can’t watch anything with a storyline or a plot. When the speech therapist came she suggested having a sheet of paper with times of things happening on the day. Can’t poss do that cos if there is something at 2pm we would have coat and shoes on at 10am. I tell him 15 mins before anything we are due to do. X
Think ime paying the price tonight for a couple of fairly calm days. Think ime about to scream and my patience being tried to its limit. Up and downstairs, making 5 cups of cold tea, moving things from one place to another etc etc. Been to bed three times and it’s only7.30.. I hate this dreadful disease
Oh no i am feeling for you
He can keep it up for about 3 hrs but is then exhausted- we both are!!Stopped trying to get him to sit down cos he just gets cross and sighs for England!! Tomorrow is another day
Oh my you must have the patience of a saint and the strength of a lion .I only hope I am as strong as you when the needs arise thank goodness I found this site .and people like you .sending hugs for you ..we will stand together
Thank you. It’s good to know that people on this forum know what we’re all going through
It’s this behaviour that makes me crack if anything is going to. I think your OH is worse than mine so I am in complete sympathy with your situation. I can be calm, reasonable and in care mode and then he starts up with this sundowning behaviour and after a couple of hours, bang. At least he will actually go to bed eventually having been doing this from earlier and earlier.
No he has Alzheimer’s and mixed dementia they said but I think there is overlap between the different dementias because diagnosis is rather inexact. There is only just so much the doctors can do to give a diagnosis and many people seem to have to wait a long time for one, even though the symptoms are bad. He apologises quite a lot but I don’t think he knows what for. He is still continent and can walk about half a mile but gets exhausted, and he is not aggressive. It’s the repetitive relentless behaviour that gets you down even though I know that he can’t help it. I am very short tempered at the moment and have to try very hard to stop it.
Don’t brat yourself up. We are only human - superhuman at times. We have to be or we would crumble. Hubby had a SPECT scan which gave the definitive diagnosis but it’s a rare dementia affecting only 2%. Keep smiling when you can x
Oh my goodness, we are supposed to be driving over to my daughters for the day and I am dreading having to get him moving, breakfasted and off in good time. I also dread the backseat driving and huffing and puffing all the way, about an hour. I have arranged with her that if I can’t get him ready in time then they will come here. It’s ages since we went to them but quite honestly I would rather go alone.
a fairly good run and only 1 moan about the speed .a bit muddled once we got here ..but walked him through the cottage and got some music on he is sat with a cuppa ...just need to unpack our over night bags and then relax ....
Make sure you try and relax. Hope OH settles ok. Not been too bad a day here- hope the evening is as good. Enjoy your little holiday@Grahamstown @Jackimags
I did it
