Grief and Guilt

Ms Meg · March 21

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 · March 22

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 · March 23

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 · March 23

@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

Ms Meg · April 1

https://alzconnected.org/discussion/comment/239097#Comment_239097

https://alzconnected.org/discussion/comment/239077#Comment_239077

My father sleeps a LOT (about 18 hrs or more a day) so there are many times when I visit that he is sleeping and will not wake up to visit. He tells me to leave him alone. I too, have found some peace just being there with him, sometimes I will even watch TV and it reminds me of when we used to watch shows together back in the old days!. Thank you for sharing!

Julie Reichle · April 1

My mom is in a similar situation. She might not remember what time or day I visit but she does know when her family has not visited for awhile. I think anytime you can give to your parent is helpful for both. We really do not know what they are experiencing

549jb · April 1

I opened this wonderful site today trying to figure out how to express my self and the situation I am in right now. My LO was placed in AL last June. His only child lives out of the country, so I am the main contact/advocate for him. The staff are talking about MC which I am trying to avoid. He has a "lady friend" who is taking most of his time for herself. When I visit she does not understand that I want time alone with him. The staff tries to redirect he but she is most determined to interject herself. Bottom line, I don't really like to visit him anymore. It is more of a hassle and I always feel really messed up when I leave there. I'm wondering if it's better at this stage to visit less often, so as not to upset the apple cart. It's a brutal disease that I am trying to understand. I'm not sure he really knows me (as I look similar to the other grey hair ladies there) and that really crushes me. Any help/advice would be appreciated. The guilt of not visiting is horrible but when I'm there it's horrible too!! Someone above mentioned that you visit for yourself and not for them…..that makes me feel less guilty. Thank you to everyone on this thoughtful thread.

Grief and Guilt

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