Grief and Guilt

Ms Meg

My Dad was diagnosed with dementia in 2019. He moved into an ALF when it was no longer safe to drive. He was living there for 3 month then Covid hit, they were basically locked down and he was kept in his apt with no outside stimulation. That's when he began to really decline. At that time he was living an hour away and I neglected to visit him for 1-2 weeks at a time. Feeling like it was pointless and feeling so much guilt! So here we are, 5 yrs later, he's moved to a new ALF just 1/2 hr away and since Sept 2024 I've visited him pretty consistently 1-2 times per week. We have the same conversations, at least twice, every time I visit. I feel so fortunate that he remembers me, but if I left and came back in half an hour, he wouldn't remember I was just there. I've struggled with not wanting to visit him, feeling it was pointless, he wouldn't remember if I did. So now, I go every week but struggle with getting in the car and going. He is sleeping 18-20 hrs a day. He barely wakes up when I am there. Now, he is on hospice care as of last week. I've felt so guilty for not being there more, and simply not WANTING to go. Now, my feelings have changed again, and I am grieving my Dad. He is a shell of the person we all loved so deeply, and every bit of his personality is gone. Now i bounce back and forth between grief and guilt- for wishing he would just quietly pass away, yet I miss him so damn much! I know I am not alone. But how do I cope with these feelings?

bether00

Someone told me that the visits at this stage are more for you, not your loved one. It gave me some peace, so if I didn’t feel up for a visit, I didn’t go and gave myself grace. Hopefully you can forgive yourself so you don’t have to feel guilt on top of the grief. The grief is painful enough. Hang in there, you are not alone.

ARIL

A friend whose mother passed last fall told me a couple of years ago that the memories I was making with my father with dementia were for me, not for him. That helped me. Now that he has declined further, one afternoon last week I sat in his room for a bit while he slept, and there was some peace for me there. I hope you can extend some mercy and grace to yourself, for the past and the present. I am sorry things are so hard.

harshedbuzz

@Ms Meg

What you are describing is ambiguous loss. Not for nothing is dementia called The Long Goodbye.

The visits in the later stages are hard. At the end my dad had changed even physically in his appearance to a degree his gender wasn't obvious; it made it hard to connect. Another friend, who cared for her mom until the end in her own home once told me "The lady who lives with me now is a nice enough little old lady, but she's not my mom".

I looked on those end stage visits as due diligence to make sure care was good and that he had what he needed. Dad was able to feed himself, so I always brought a treat of some kind.

HB