Frontotemporal dementia

[CPD]

hi
My sister (aged 65) has had this for approximately 5 years and is slowly declining each time I see her which is every 6 weeks. My brother in law does a wonderful job of looking after her.
Because she can't respond to questions as such I'm not sure how I should be talking to her. I tend to chat generally so not asking questions.
I would love to know what she is thinking and does she realise what is happening. But I don't want to ask her and risk upsetting her because she can't tell me.
I would like to know how others deal with this issue.
Any insight would help.

 

[Cat27]

Welcome to TP

You may find this thread helpful https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[oldman1952]

hi
My sister (aged 65) has had this for approximately 5 years and is slowly declining each time I see her which is every 6 weeks. My brother in law does a wonderful job of looking after her.
Because she can't respond to questions as such I'm not sure how I should be talking to her. I tend to chat generally so not asking questions.
I would love to know what she is thinking and does she realise what is happening. But I don't want to ask her and risk upsetting her because she can't tell me.
I would like to know how others deal with this issue.
Any insight would help.

Hi CPD, just browsing the site and your post came up just after replying to a post from another lady about her mum eating all the time, even at night and she was going down pretty quickly. Her daughter visits ever 6 weeks and she notices the changes.
About 10-15 years ago my behaviour started to change and I had problems with my memory. It has got worse. I am 65 too. Long career in the HM Forces and 34 years plus as a nurse in the NHS. The prognosis can vary from person to person If you read up about it on this site its frightening. I have already got swallowing problems to add to the long list of physical problems. I now never look back as I cannot change the past. I cannot see into the future but I can live for today. To me, life is like a jigsaw, when I was conceived the lid came off of the box with the pieces inside. 2 pieces joined and made me. when I reached 50 the jigsaw was complete. The next day one piece was taken from the jigsaw and put back in the box. This has been happening as I have been ill with all sorts of illnesses and it will continue piece by piece going back in the box until that day when I say well that is it I have had a great life and done some things many mortals would never have dreamed about doing and in different parts of the world. I will say one final farewell and the lid will then be closed on that chapter of my life. Making room for someone new to take my place in society and I hope did what I loved doing, caring for others in a compassionate way.
By the way I was diagnosed with early onset frontotemporal lobe dementia about 6 weeks ago, if I have not already done so. Thanks for listening Oldman1952.

 

[Izzy]

Goodness @oldman1952 what an incredible analogy. I do admire your attitude.

 

[Grannie G]

You have an amazing attitude @oldman1952. Respect to you.

 

[DollyBird16]

. I now never look back as I cannot change the past. I cannot see into the future but I can live for today.

Thank you, for sharing you are so right.
Have a great day. x