medication(9)

Kenzie56

My DH who is 70 has mixed dementia and is at the moderate/severe stage.  For the past 18 mos he has been on Memantine and Donepezil. Prior to medication he thought he lived with multiple versions of me (the lady that walked the dogs, the lady that paid the bills, the lady that filled his pill boxes, etc.) all at the same time and did not recognize me as his wife. He kept asking me who all these people were that lived in the house. (We live alone) The medications helped with disorientation and he "found" me again.  Lately, things have gone downhill and he is having a lot of trouble communicating and understanding people, TV, family, etc.  I know these meds lose their effectiveness, but will I wake up one day to him seeing many versions of me in the home and not recognizing me? Will it be like it was, but worse? I know his brain cells have been dying even on the meds...I wonder how much worse he really is and what to expect.

Stuck in the middle

Kenzie, no one knows what to expect next.  AD affects each person differently.

The disease is progressing and he is changing.  He is not regressing to what he was before he started the meds.  He is progressing to a new reality that may or may not resemble any you have seen in him before.  You may see personality changes; you will certainly see more and more need for assistance in even simple tasks.

I think of life with my wife as a float trip down a winding river.  Something new is around every bend in the river.  It may be a deep, quiet pool, it may be white water, it may be a waterfall.  I just keep my eyes downstream, stay on my knees, and hang on to my paddle.

Kenzie56

Thank you - that is a good way to think about it.  My DH's mother died of Lewy Body Dementia, which was a totally different experience, and his siblings have Alzheimer's...also different. I was his mother's caregiver while also experiencing my DH's early symptoms. I am always curious that every time I think I have a handle on things, there is a new experience that I am not prepared for. Your analogy makes sense. Thank you.

LicketyGlitz

Stuck, that is a beautiful analogy that will stick with me for a long time. I wished I had wrote those words to give others an idea of the role of dementia caregivers.

Kenzie, have you seen The Father? With Anthony Hopkins? Reading about your husband reminds me of that character and even with your wealth of experience with this disease, may give you some new insights into what your husband is experiencing.

As Stuck says, hang on to your paddle! You got this.

Kenzie56

Thank you, LG, for your response and support. I did see The Father and you are correct - it was very similar and it helped me tremendously to understand his perspective. After he started on the medications, the other versions of me seemed to disappear for a year...but lately he will have breakfast with me, go in and get dressed, then come back out in the living room and very formally say, "Good morning - how are you today" like I might be the office worker again.  I never try to correct him, I just respond to his question. He also wanted to know how many people own our home. This has only happened a couple times, that is why I was wondering if he is slowly drifting back to that state of mind. 

Just be ready for anything and hold on to my paddle is now my motto and I am thankful for that thought.

Just Ro

Before placing my DH on Aricept and Seroquel in March, he was experiencing the same type of  delusions and disorientation regarding who I was (his wife of almost 54 years),  who owned the house (that we’ve owned for 52 years). He would look at me, not knowing who I was, and would ask me who paid me for all the work I did around the house. Haha, I wish someone would!  He also experienced hallucinations, wandering, insomnia, agitation, etc.  The medications have really helped him and most of these behaviors are gone.  (He is perseverating about the 4th of July, but he does know who I am and that the party will be at our house) While this is all great, I keep worrying and wondering when we might return to crazy town.  I guess no one knows how long the benefits will last.  I’m glad you got 18 months and so sorry if your LO’s troubling behaviors are returning.  What a journey we are on! Take care, dear one.

Kenzie56

Thank you for your post. It is indeed comforting knowing I am not alone. My mother-in-law had hallucinations, but she saw children and animals running through the house and was so upset that the children never talked to her. (She was diagnosed with Lewy Body Dementia). My DH and I have been married for 43 years and before meds, he kept looking for his "wife" - finally he found our wedding picture and showed me and told me this is his wife and he doesn't know why she left him. He didn't recognize our home and all the "people" that lived with him.  Like the movie, he was back 43 years and of course the senior me was someone he did not recognize, so it made since to him that I was a worker.  I find it challenging, but can manage (so far) the anxiety, confusion, communication issues, not able to do simple tasks like turn on the TV...but the hardest so far was watching him look for his wife and not recognizing me. "I" disappeared and am frightened it is happening again.  I'm glad I found this forum - it is comforting. My children don't want to talk about their father because it makes them sad...my friends don't understand, so this is such a lonely disease.