A Smack of Reality

CindyBum · September 25

I have been struggling so much with getting my thin skin hit by complaints from my DW in Stage 6. I realize that so much of it comes from me still carrying denial that this is really happening. Imagine that. Denial still after nearly 7 years when she's also clearly now in Stage 6. The smack of that reality really hit me yesterday when she said, "I keep forgetting your name." and then she had an entire conversation with me, as it were with her aphasia, where she was clearly talking about Cindy to me…Cindy. I thought I'd be more sad about her starting to forget me, but it really gave me a dose of reality I needed. She's not really there much of the time anymore. I'm hopeful I'll be able to move beyond the complaints without taking them too personally going forward.

One part of denial still hangs with me though, because I've sort of become a doctor now. Not really, obviously. I've taken one first aid class 40 years ago as a undergraduate. But, our geriatric psych prescribed my DW Gabapentin for her anxiety. He said, "The dosage can be between 100ml and 900. Just find the right dosage for her." That was fine as long as she was doing ok with just 100ml, but now she's up all night many nights and we've built to 600ml to try and manage that. I feel myself wondering if the larger dose is making her speech worse. Am I harming her or helping her? It's so difficult to accept that her sleeping more from the increased dosage is better for her than anxiously wandering the house all night. So many of the behaviors of dementia also mimic some of the side effects of the drugs I'm giving her. I'm going to talk to the geriatric psych again, but anyone else worry about the drugs our LOs are getting like I am?

And final question on drugs. For those of you with your LOs on Lexapro. Have any of you experience side effects like hallucinations and nightmares? I know Lexapro is a hard one to get off of for many folks, but I'm considering discussing with the doctor, moving my DW to another anti-depressant that does not have these side effects. Perhaps I can spare her those hallucinations and nightmares if they are drug-induced.

Thanks all. Big hugs and hope you're hanging in there.

SDianeL · September 26

the neurologist put my husband on Risperidone for hallucinations. It helped for awhile. Hallucinations and delusions are common. Be specific with the doctor about all her behaviors. Anxiety, agitation, hallucinations, delusions, aggressiveness etc. it takes a while to get the right doses and meds that work.

SDianeL · September 26

PS: denial is common with us caregivers. It’s a defense mechanism. The reality is too painful. Good that you are looking inward. It really helps.

trottingalong · September 26

Theres a possibility gabapentin may not be the type of medicine she needs right now. Some work for awhile and then don’t. It’s been a few years, but our doctor would not prescribe gabapentin because he was concerned it would make things worse with him having dementia. There are different meds available that many on this forum have tried.

Michele P · September 26

I was prescribed gabapentin for nerve pain. The doctor increased the dosage over a two month period. It drastically impacted my cognitive functioning. I couldn’t process information or focus on any tasks. My husband saw me put a pot on the stove and just stare at it. When he asked me what I was doing, I told him I was making soup. I wasn’t cooking anything. My neurologist took me off the drug. Based on my experience, it definitely can have an impact on cognitive functioning.

marier · September 26

I to have had unpleasant experience with gabapentin being given to me for leg and low back pain. I could not tolerator the medication. I had similar experience to Michele P.

My DH is on trazodone for sleep. He was on Seroquel . The Seroquel stopped working and trazodone has been successful.

My DH is stage 7 and does at times have some hallucinations. However they are not harming him nor causing him stress. At this time I have elected not to treat with additional meds.

Kat63 · September 26

My DH has been prescribed different medications starting a few years ago. Trazodone was the first and the first week taking it, my DH was up for 36 hours straight. I know this can happen, but I took him off of the Trazodone and for my DH it was the only time he was up all night long. He has been given Gabapentin, but it really affected his cognition and his voice was different, so again I stopped it. He cannot take the Dapakote as it’s time released and he can no longer swallow pills and thr Dapakote cannot be chewed or crushed. He has been on Seroquel for over a year and we have had to increase the dosage to where he currently takes a total of 400 mg in a day. I know this is more than most take, but Hospice has okayed this amount and my DH is still pretty big (225 lbs). And it’s the only medication he takes. It keeps his agitation to where I can redirect him. When not on Seroquel or strong enough dosage, i cannot get him off of things by redirecting etc., which makes things stressful for me and sometimes unsafe for him. The down side is he struggles a little more with balance and walking, but amazes me how he uses the furniture and walls to help inside the house and we use a walker for outside. We haven’t had any falls for several months. So for my DH, I feel the benefits out weigh the side effects.

Denise1847 · September 26

https://alzconnected.org/discussion/74199/a-smack-of-reality

My DH is on Seraquel which works well.

AlzWife2023 · September 27

Our neuro said at the beginning to try to manage behaviors without meds. It takes full time patience to do that! I hope we can continue to do it, tho. I can see how difficult it would be to tell the diff. between the disease progression and side effects. My DH has been more excited of late so i hope that does not escalate into anything unmanageable. Good luck.

I know what you mean about sort of divorcing or moving on emotionally—its only normal & healthy—I've been going through this, too, realizing there no connection other than the past & his dependence. The man I built my life around and depended on now fluctuates between acting like a toddler and a zombie.

blacksparky · September 27

My DW had been taking gabapentin daily for back pain when I met her 15 years ago. She was diagnosed 3 years ago with EOAD. Not being a doctor, this is just my thoughts that I believe gabapentin after all those years contributed to her getting the diagnoses. Not only does it numb pain in the body, it also numbs the brain activity. My doctor just prescribed gabapentin for my lower back pain and I said no thanks…

White Crane · September 27

Cinndy, I don't have any answers about Gabapentin but I do understand the denial. Even now after all these years I'm having trouble accepting that DH is progressing even though he's speaking word salad now. As to your thin skin, if you didn't love her so much, it wouldn't hurt so much. Hang in. You are a wonderful caregiver. Sending big hugs.

Brenda

GothicGremlin · September 28

Cindy - I hear you about your DW talking to you about you. My sister did that to me all the time, although she clearly knew who I was. But talking to me about me was …. difficult. She'd also talk to a photo of me (it was a photo of her, me, and our brother). I was probably about 20 years old in that photo.

The drugs issue was also really hard, and I don't feel like I ever really conquered it. Trazadone helped for awhile, and then Seroquel. As she neared the end of stage 6 we added Depakote. The Depakote finally stopped the hallucinations, but it made her sleep a lot too, so not the best balance. But at least she wasn't screaming … I don't have any experience with Gabapentin.

I hope you're able to find something that works for your DW. The drugs were just such a tough nut to crack.

A Smack of Reality

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