Early onset adjustments

sammyscat

A neurologist says my 78yo DH has moderate to severe dementia and prescribed Donepezil (Aricept) to help with memory.  His memory has been going on and off for about five years, with the last 18 months more so.  He knows he has memory issues but what he doesn't understand is that his personality changes when he is going into what I call 'phase'.  He gets angry, moody, nasty, makes poor decisions, as well as memory blanks. Basically acts like a sullen 15yo would to his mother.  These phases can last for days or weeks.

There is rarely a day I don't want to just walk out and not look back.  If this is the beginning I don't know if I'll be able to cope through the long journey.  I do not have any support. 

I would like to see articles that will help people like me, in the beginning, but not ready for in home caregiving support, day care, etc.  How to cope with the LO that sometimes knows there is a problem but the the extent of it.  And why doctor's don't seem to know how to deal with questions and concerns from the patient or spouse.

Marta

Hi, Sammy. You sound frustrated. 

Can you elaborate on the difficulty you are having getting your questions/concerns answered?

sammyscat

It has to do with how to live everyday with someone that one day can help make household decisions and the next think I am trying to manipulate, or mother, him because he doesn't fully remember.  I try not to use the phrase, 'do you remember'.

And, how to deal with the isolation he puts himself and us in because he won't wear his hearing aids, or take the initiative to operate his cell phone, or play games to help his memory.

Marta

Sammy. Most of us were clueless when we started this journey. The questions you have can be answered by educating yourself about dementia. A good place to start would be Understanding the Dementia Experience by Jennifer Fuller (someone please post a live link) or check on Amazon. Another extremely helpful book is The 36 Hour Day. 

On YouTube, look at videos by Teepa Snow, for dealing with difficult behaviors. 

That’s enough to get started. Also, come here to vent anytime. 

sammyscat

Marta, thank you so much for this information.  I have gone to Amazon and ordered both books.

eaglemom

If you will go to the top of this page, you will see 'solutions.' Click on it and it will bring up a variety of topics. Click on the topics that you are interested in. Also never hesitate to contact the ALZ Help Line 800-272-3900. The phone is answered 24/7 and ask to speak with a care consultant.

Also have you contacted your local ALZ Chapter? If not I highly encourage you to do so. They can be a wealth of information. They also might be having virtual support groups which I highly recommend you look into.

eagle

Cynbar

Come here to these boards often, there is a wealth of support and advice and even hugs when you need one. I know that I myself often feel isolated in my real world, people around me are kind but no one understands dementia if they haven't lived it. Read all the threads, but do remember that not everything you see will happen to you and your DH. I found this forum a year ago last month, and it has made all the difference for me in terms of understanding the disease, and feeling finally supported. We are all here for each other, every step of the way.