What resources have you used to educate yourself about caring for loved one with dementia?

[Stellalarella]

We are now caring for parents, one  with Parkinson's related dementia and one with post-stroke dementia.  I'm not inexperienced with dementia patients as I worked in nursing homes for several years, but it is different when it is your own loved one in your own home 24/7.  Do you have any resources that helped you?  Strategies?  For example, I show mom how to run the TV, but she forgets and then says it is broken.  Then she gets frustrated with me because "I never showed her how to do it."  Stuff like that.  What do you do to remind yourself that it is the dementia and not a personal attack on you, the caregiver?  Also, is there anything that could help post-stroke dementia improve?

 

 

[Melinda S in TX]

I highly recommend this book.

 

http://www.amazon.com/The-36-Hour-Day-Alzheimer-Dementias/dp/1455521159/ref=sr_1_1?ie=UTF8&qid=1388293242&sr=8-1&keywords=36+hour+day

 

Dh has brain cancer and the tumor and treatments have caused dementia.  The most important thing I have found is to not take it personally.

 

I have not found anything that helps dh remember.  Sometimes he can find the bathroom, sometimes he can't.  He can't figure out which dresser drawers are his.  He can't remember what day of the week it is or what we are doing that day.  I have the mindset that I have never shown/told him this before, so he can't be expected to know.  Yes, I may have shown him 100 times, but if I don't expect him to know it than I am not upset when he doesn't.  I respond to everything as if this is the first time I am telling him about it.

 

Dh is home 24/7 and wants us to do things for and with him every second.  I cope with this by not doing it all myself.  If dh wants a cup of water, I tell the nearest child to get it.  The little girls color with him.  The bigger children read to him or sing songs to him.  Everyone shares their latest drawing, lego project, how the cows are doing, or whatever they have to share.  He needs to be kept busy or he will drive us crazy.  We take turns babysitting Papa.

 

Dh talks constantly.  Sometimes I just have to step out of the room and ignore him, or I think I will go crazy.  That minute hiding in the bedroom saves me.

 

I'm sorry you're having to go through this.  If you want to talk, pm me.

[Melinda S in TX]

Another thing that I forgot to mention is that the children and I have private meetings without dh.  Dh would interrupt, become defensive, get off topic, try and be funny, etc and the children wouldn't say anything when he was around.  I found if I wanted to have a decent discussion and get the children's honest feelings and input, we had to do it without dh.  We don't make a big deal of it, just go into the bedroom or stay up a little later.

[G5052]

Also this book:  http://www.amazon.com/dp/0618485171/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=8MIFRUNR6NG6&coliid=I3KQOA5X4IN8MO

 

My parents had the same combination of dementia that you're dealing with.  My mother had a stroke and then went into vascular dementia.  She improved her ability to walk and care for herself after the stroke, but mentally she never recovered and continued to lose ground step-by-step.

 

My biggest recommendation is that you educate yourself and prepare for every possible avenue in caring for them.  It is possible that Medicare/insurance may pay for some help for you, and you probably know that sometimes folks with dementia just can't be cared for at all at home.  They can become so difficult and even violent that professional care is a must.  Don't underestimate how bad it can get.  Hopefully you won't end up there, but you need to think through and talk about what you'll do if this isn't working.

 

If they being cared for by a neurologist, someone needs to go with them and take notes. In my experience, most primary care doctors aren't equipped to handle this. My mother's dementia was very poorly managed by her primary (prescribed drugs that were dangerous for vascular dementia, repeatedly underestimated the impairment, etc. etc.). People with dementia should not be managing their own medication either.

[Stellalarella]

Melinda--thank you for the book rec and for sharing what you are going through.  I will look up the book.  I bet it is at our library.  G5052, thank you for sharing...yes, I agree with you about the dr. visits and meds.  Thank you, both of you.