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mo77 · January 23

My dad is scheduled in February to start Leqembi. I am having a hard time wanting to try this experimental treatment. I love my dad. I am worrying about the negative side effects. My dad is at stage 3-4 of Alzheimers. He is coherent. My mom agrees with my dad.

I have already let go of my father. He isn't the father, I once know anymore. It hasn't been easy. I accept were both my parents are coming from with making this decision. This decision is weighing heavily on my heart and mind.

If anybody can give me any advice. It would be greatly appreciated.

sandwichone123 · January 24

What does your father think? Is he wanting to pursue this treatment? Really for many of us with the experience of having a loved one with Alz, any end is better than a decade or more of decline with dementia. I would be more worried about extending the time with dementia than I would be about negative effects, but that's just me.

H1235 · January 24

If there are negative side effects can’t he just stop the treatment?

harshedbuzz · January 24

@mo77

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I can appreciate how hard it is as an adult child to not have a voice in treatment and care decisions but for good or ill, this is your dad's (and mom's) choice to make. I didn't always agree with choices mom (and dad who was well into the middle stages when diagnosed) made for dad's care and feel your frustration. FWIW, the infusion medications are reserved for those early in the disease progression who presumably have the capacity to make an informed choice.

The reality here is that you dad already has a terminal illness which impacts how one parses a risk to benefit ratio. These FDA approved medications have been well tested and are not considered "experimental" assuming your dad has tested positive for the presence of amyloid.

It's interesting that you mentioned that you already struggle to relate to this man as the dad you knew. I'm not judging, many folks feel this way, but often it's a realization that happens much later in the disease in the later stages. It might be helpful for you to keep coming here for support and consider other options as well in the form of an IRL support group (mine was so helpful) or even some talk therapy.

Good luck.
HB

Merla · January 26

I do kind of relate to the mentality of accepting a parents diagnosis, mourning the loss and then just kind of saying a decisive good bye to the parent you knew. I had a slow and gradual realization my parent had dementia starting 7 years ago, then knowing for sure 3 years ago and reading a lot about the condition and prognosis and how to deal with someone with dementia. My friends and husband thought I was overreacting 3 years ago when I was so sad about my parents then undiagnosed dementia. But this was when I realized I had lost the parent I knew and the loss would only get more profound. And I also realized I had a crisis coming towards me that would hit at an unknown time and I needed to figure out a plan for my parents welfare and also my own. I haven't felt sadness since I felt back then though I do feel occasional waves of sadness as my parents condition progresses and also my own loss hits me hard occasionally

SDianeL · January 26

welcome. Sorry about your Dad’s diagnosis. Unless you are DPOA your parent makes the decision. If he gets side effects he can stop the infusions. At most the infusions will delay progression by a few months. They may have the benefit of increasing cognitive clarity meanwhile. I would support their decision yet monitor possible side effects.

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