Do we know what our dementia loved ones are thinking?

[maggie6445]

David Joseph said,
The problem is that what a dementia person is thinking is nearly impossible to tell, for several reasons. In the earlier stages it is obvious sometimes to find that the individual is having some mild difficulties in word-finding and expressing themselves intelligibly and without mistakes AND it is less obvious that the person is having difficulties in understanding what exactly is being said. At the moment, both of these symptoms have caused me difficulties, though sometimes this is intermittent, it comes and goes, and sometimes worsens. If my wife asks me to do something simple, I find it hard to comply correctly because I don’t understand what she is saying. She thinks I am hard of hearing but I know I am not. She has to point out what she means, where a certain object is, and what she wants me to do, but it’s like listening hard to something garbled and confusing. I want to help her physically, like lifting and moving items, which I can do, but frequently get it wrong by not knowing what her words mean. This is not selective, intentional or deliberate!!!
Unfortunately, expressive and receptive dysphasia can and often do worsen, sometimes unevenly, sometimes with good days and bad days and unpredictably.
Very sad.
David Joseph

Thank you for your input. It took me a while to realise that my OH just couldn't process what I was asking of him ,especially in the early days when he wanted to help ,and he had been a practical person.
It was frustrating for both of us when he offered to help and then I had to tell him exactly how to. ,but to save frustration for both of us I tried not to ask for help in the end.
I never thought he was doing it deliberately or being selective about it

You're right,it is very sad.

 

[David Joseph]

Hi Maggie6445
Yes, sad for me, and frustrating for OH and me. Afterwards it makes me cry. The tears come pouring out, and then I try hard to pull myself together. And then I try to pull myself together for the sake of my wife. I don’t know how I get through 45 minutes with our support worker! And this is 10 months since being diagnosed with mild. Alzheimer’s!!!
Any suggestions welcome.
David Joseph

 

[Angel55]

David Joseph said,
The problem is that what a dementia person is thinking is nearly impossible to tell, for several reasons. In the earlier stages it is obvious sometimes to find that the individual is having some mild difficulties in word-finding and expressing themselves intelligibly and without mistakes AND it is less obvious that the person is having difficulties in understanding what exactly is being said. At the moment, both of these symptoms have caused me difficulties, though sometimes this is intermittent, it comes and goes, and sometimes worsens. If my wife asks me to do something simple, I find it hard to comply correctly because I don’t understand what she is saying. She thinks I am hard of hearing but I know I am not. She has to point out what she means, where a certain object is, and what she wants me to do, but it’s like listening hard to something garbled and confusing. I want to help her physically, like lifting and moving items, which I can do, but frequently get it wrong by not knowing what her words mean. This is not selective, intentional or deliberate!!!
Unfortunately, expressive and receptive dysphasia can and often do worsen, sometimes unevenly, sometimes with good days and bad days and unpredictably.
Very sad.
David Joseph

Hello David Joseph

Thank you for sharing your own experience.

I notice with Dad and I have thought before I wonder if I need to change my words to make it easier and I do or point things out, or a word we have always used and I have to exchange it for another word instead. 💗 thank you x

 

[maggie6445]

Hi David Joseph. I found giving one instruction or task at a time helped in the early stage. I tried not to say do this and do that. I didn't want him to lose the skills he still had so I would try to plan doing some jobs when I had time to wait for him to do them.
He was keen at woodworking for a hobby and had made furniture for our home, fitted the kitchen and made dolls cots for charity. As he lost measuring skills and became unsafe with cutting equipment I bought pre packed items for the garden eg planters to assemble. That worked for a season but he was unable to do that the following year. I would ask him to sweep and I would shovel the sweepings up. .
When he became unable to plant bought plants into tubs I gave him the job of watering them when I'd done it.
Sadly he is unable to do anything much at all now as he doesn't understand a lot of instructions. He has lost language skills where he can find it difficult to process words like up,down, turn around . arms in etc That is another source of frustration for both of us . It's about trying to adapt, and just as we master one problem we are presented with another.

Life now tends to be a series of commands. So .. foot up, with the accompanying tap of the foot and hand gesture up.
But I try .

 

[Boneking]

I have been diagnosed with MCI and have been looking for this type of information. Sometimes I think it is all in my head. No pun intended. I do believe that this should be a very important study. Most of the information I find is all about physical findings and stages of dementia. I have no idea what my future is going to be like or how much sane time I have left. I think there needs to be a lot more studies with individuals in the early stages when they can still have some input and being able to express (maybe) on how they are feeling and what thought processes they are having. I always thought that it was easier for those with dementia but at this point in my diagnoses I find it very hard. The thoughts that go through my head is like a train wreck. I don't know which way to turn when looking for answers. i know a lot of things that people with dementia go through and have been trying to prevent them but I don't know if I am able to. I steady worry about how my wife is feeling, why does she want to stay with me knowing her life could become hell, I have had thoughts of treating her badly so she will leave and not need to take this horrible journey. I very seriously thought of taking my own life but chose not to because of what it would do to my family. There are times when i think I made the wrong decision especially when I hear others say they would take their own lives if they ever get dementia. This is just a few things that clog a brain that is already misfiring. At this point I am trying to live my life like I am totally okay and only hits me hard when I have to think, read, hear or talk about it. Most people that I know downplay my MCI so I try not to mention anything to anyone besides my wife. I try to live each day to the fullest and would recommend that to anyone. Thanks for the opportunity.

 

[SherwoodSue]

Please keep thinking about your family. Please remind yourself they would never want you to take your life.
Please make sure your doctor knows you have these thoughts.
You need a plan to keep you safe if these thoughts return.
Please keep safe