Etiquette and Alzheimer's

Inkdancer

So I called my grandparents last night, just to chat. My grandpa answered the phone, and didn't recognize my voice. When I said my name, he didn't know who I was.  I was able to not get upset at him and quickly get transferred to my grandma, but I did cry after I got off the phone. I know it's not in his control but it really hurts to be forgotten.

I want my grandparents to be at my wedding. I want them to know that even though their son abandoned me, I still love them, and I want them to see me happy. But another part of me doesn't want a grandfather there who literally doesn't know who I am. I can't exactly not send them an invitation but... I just don't know what to do.

How do I deal?

HisGirlFriday13

(((HUGS)))

My beloved grandmother had Alzheimer's, and it sucks. It hurts.

You deal by remembering the good times. He may not remember you, but you remember him. And any kindness you show him, he'll appreciate in the moment, even if he doesn't remember it later.

He might remember you when he sees you in person -- for my grandmother, voices were hard, but faces were easier.

They will see how happy you are on your wedding day. Your grandfather may be fuzzy on the details, but your grandmother will know who you are and why she's there and she'll know you're happy, and she'll tell him about it, over and over again, in case he forgets. 

photokitty

I'm sorry you are dealing with this. Alz sucks, big time.

I would invite him. I would let grandma decide if he is able to attend. He knows who you are in his heart and that's what matters.

How far along is he? Does he recognize you in person, ever? I know most days my grandpa didn't know who I was - he would talk about me to me and how he needed to leave bc PK was waiting for him. Other days he knew me. He was not aggressive and was a happy guy - not always the case with dementia.

I would invite them and offer for them to bring a caregiver as well - if he has one. That way he would have someone with him if grandma wanted to talk to people or dance or whatnot. There are respite options through Alz Assoc or state dept of aging, she might be able to have someone stay with him at home so she can attend if he is not well enough to attend.

Hang in there and remember him as he was, not as he is since Alz has robbed him of his memories. **HUGS**

ScoutF

I lost my grandfather to Alzheimer's ten years ago. It's such a shitty disease. H's grandfather is currently suffering from it as well. He has no clue who my H is, but we still sent the invitation addressed to each of them more so for his grandmother's sake. She is absolutely convinced he's getting better and was very upset that we got married when we did instead of waiting until Valentine's day so they both could have made it.

Address it to both of them.

Edited because I can't type on my phone.

Inkdancer

@photokitty Unfortunately I live a 10 hour drive away from him, so I haven't seen them in about 5 years. I think if he saw me in person he'd confuse me for my mother. He's very bad now... will get mad because he wants to go home while sitting in his living room in the house he's lived in for 15 years. Grandma is his only caregiver (which amazes me since she's going through chemo for breast cancer...she is a tough cookie!). It's just a really crappy situation.

I appreciate everyone's support. If they can make it, I will make sure to treat him just the same as I always do, with lots of love.

Jen4948

I'm so sorry.  Alzheimer's sucks for all involved.

No additional advice, just lots of hugs.

abbyj700

Invite them, share things about the wedding with them - but I wouldn't be set on them being there (depending on where in location to them the wedding is).

My grandfather is having more and more dementia as time goes by. He didn't recognize his daughters the other day. He's often confused on where he is. My grandmother on the other hand just has physical issues getting around and can't hear. But when I called to thank them for a financial present they had sent - my grandmother (reading over the phone with her awesome new technology) got very excited when I told her the gift would help with the wedding. She replied with "yes - November 1st is coming fast isn't it!" I was touched that she remembered our date. 

They won't be attending. The wedding is a state away and worlds away for a couple in their physical/mental condition. But that will never stop me from sharing, inviting, thanking, sending - anything and everything I can having to do with our wedding.

photokitty

Inkdancer said:

@photokitty Unfortunately I live a 10 hour drive away from him, so I haven't seen them in about 5 years. I think if he saw me in person he'd confuse me for my mother. He's very bad now... will get mad because he wants to go home while sitting in his living room in the house he's lived in for 15 years. Grandma is his only caregiver (which amazes me since she's going through chemo for breast cancer...she is a tough cookie!). It's just a really crappy situation.

I appreciate everyone's support. If they can make it, I will make sure to treat him just the same as I always do, with lots of love.

This is very common. Over the years I have been fortunate to meet a lot of caregivers and they are the strongest folks I've ever met - often with their own health issues. Unfortunately they often put their loved ones first and don't care of themselves.  I highly recommend her reaching out tot he state dept of aging, local agency on aging and the Alz Assoc - they are there to help and many state/ communities offer respite for caregivers.

The best thing you can do is what you suggested, being loving to grandpa…and might I add, call your grandma when you can…caregivers are often lonely and don't see anyone besides the person they are caring for. They really appreciate someone to talk to, just to listen to them or - especially with Alz - someone who can carry on a conversation with them.

LondonLisa

My grandfather had Alzheimers before he passed away. At my cousin James's wedding, his live-in nurse (who was also invited) kept a photo of my cousin as a little boy with my grandfather handy (it had been framed in their house so it was a very familiar photo). Whenever he was confused, my grandfather's nurse would pull out the photo and calmly explain that James was grown up now and it was his wedding. The photo of James as a little boy really triggered my grandfather's memory as it is often new memories that are lost first, with older memories still intact. 

It was a really handy help for any of my cousin's events and really reassured him, as he knew the photos and knew exactly who we were when seeing it even if the names weren't there.

It is really hard, and I'm sorry you are going through this.

JellyBean52513

I had a similar experience this past Christmas. I went to visit my dad, who lives in a nursing home due to a traumatic brain injury that left him with terrible short term memory loss. He seems to be totally coherent and normal, until you get to talking to him and he repeats himself every few minutes and asks you what your name is because he forgot. He's always known who I am, albeit can't seem to remember my age (guesses within a few years). 

When I got to the nursing home to surprise him, he was sitting in a common room with some other people. I walked right up to him and said "Merry Christmas dad!" and he goes "I'm sorry, who are you looking for?" I stared right at him and said "I'm here for you, dad." He took his glasses off and said "What's your name, who're you here for?" My eyes welled up with tears because I didn't know what to say. I just sorta mumbled my name and he goes "Holy shit! I didn't even recognize you! Oh my god, hi sweetie!" I had to keep from crying. He hadn't seen me in about a year and a half, but I didn't think I looked THAT much different. It was definitely a scary moment.

I agree with PPs, just stay as close with grandpa as you can and be as loving to him as possible. He can't really do anything about his condition, and I know my dad gets so angry and frustrated when he knows he's forgetting something or he has to be reminded of something, because he thinks he should just be able to remember on his own. I can only imagine what your grandpa must be feel like, having "strangers" call him grandpa and say things to him that don't register in his mind. Try to be mindful of his perspective and just be his granddaughter.

melbenso

A few years ago, FI and I attended the wedding of his godsister.  His godmother had Alzheimer's and was very far in to the disease at that point.  Sometimes she recognized her children.  Sometimes she didn't.  She didn't recognize FI, but was still very pleased to meet me.  She no longer spoke English and only spoke French (which was her native language, and her children all speak it).

Nonetheless, she was thrilled to be at her daughter's wedding and to see so many people who loved her so much - even if she didn't know who they were.

Invite your grandfather, as you normally would.  If he has a home health care nurse, or something to that effect, you may want to make sure he or she can be there too.  FI's godmother's nurse was there to care for her so that the rest of the family could spend time with each other without having to watch her constantly to make sure she was ok.

It is terribly difficult to watch someone you love slip away like that.  But your grandfather still loves you and will be able to tell that you love him.

climbingsingle

I lost my grandfather to Alzheimer's. My grandmother was also his caregiver too. I don't know how she did it for so long. She's amazing person. 

I remember my grandfather getting angry too, and didn't enjoy being out. I guess this is something your grandmother can probably make the call on. Invite them and maybe discuss with her if she feels he'll be OK at the wedding. 

I'm sorry! I know how terrible it is to see a loved one suffer from this.