Her delusion is just having difficulty identifying me as her spouse. Everyone else in our lives she knows and remembers - it's just me she has difficulty with. Her delusion is that there are multiple men who live with her and I appear as these different men. I've been trying to correct her but it's caused more harm than good and it makes me extremely frustrated. Do I just go along with her delusions? I almost always feel the need to correct her but it seems counter productive and sometimes causes her stress which in turn makes her Parkinson's worse. It absolutely drives me nuts and I sometimes get angry with her which also makes everything worse. What should I be doing?
Twinning hallucinations can be difficult to accept, but are common with LBD. For my dad, there are times when simply acknowledging his hallucinations helps calm him. More often the hallucinations persist despite drugs and constant reassurance and redirection. In nearly thee years, never once has contradicting dad’s hallucinations been helpful. (One relative who insists on doing so has been incorporated into dad’s horrors as her evil twin, complete with a new name and concerns for the well-being of the lost original.) It’s heartbreaking.
The Lewy Body Dementia Association website is lbda.org
If books suit you better than internet browsing, there are dozens to chose from.
“A Caregiver’s Guide to Lewy Body Dementia” by Helen Buell Whitworth and James Whitworth, is fairly comprehensive. It’s readable, not written like a medical text.
”Other Mes: A Caregiver’s Experience with Lewy Body Dementia” by Jim Adams is a personal perspective.
It’s important to talk to an informed neurologist because a diagnosis of LBD will impact the treatment of other medical issues.
LBD patients have severe - sometimes permanent - adverse reactions to many commonly used drugs, from simple OTCs like Benadryl, to anti-psychotics, to general anesthesia.
I wish you peaceful moments in your caregiving journey.
Save arguments and anger for someone else who can fight a fair fight with you, if you must. Save your energy where she is concerned.
You're only human, so accept the fact that you're doing the best you can and may have times when you DO blow up out of frustration. Try leaving the room to regroup and then have another go at it.
Wishing you the best of luck dealing with such a tough situation. Hugs and prayers sent your way
My DW has a full plate of 16-19 hour days as a Teacher. She'll be retiring at the end of this school year. I continue to do what I can to lighten the load, but there are a lot of things I used to do but can no longer safely manage any longer. Our youngest is 13, and very willing to do anything she can for me or mom without complaint. I'm blessed to have them caring for me. I hope many readers will benefit from my drivel of comments.
Also look for a local Forgetful Friends Group. My DW and I have learned a lot from others facing the battle of ALZ and other types of
dementias.
Your family is also a blessing for you - If I recall correctly, you had told them to put you away 100 miles away when the time comes and not to visit. I would at least leave the option for visiting open. Despite how this affliction treats you, they still know it is you, and they care about you. Yes, it can be hard watching a LO fade away, but that should be their choice.
Thank you for all your intelligent insights you have shared with us!
If I called my husband on the phone he new me but that became heartbreaking After a while also as he could not understand why I couldn’t come and get him.
This went on for many months and eventually he started giving me some identities eg, old high school classmate etc
As time went on he didn’t believe this was his home and tried to “go home”
It was a very tough time for us and there isn’t anything anyone can do to make it better.A reprieve that gave me some respite was Adult Day Health facility a couple of days a week.
Good Luck and God Bless as you travel this very difficult road .
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