It Begins

MemoryGuardian

After my fathers inital diagnosis little while ago without a tear; today it hit me hard.

A distant friend that my parents visited (with prior warning of the situation), spoke of how different my dad was generally and how in ~5yrs since last seeing both my parents the changes in my dad.

Denial - for the longest time we've seen him bumble about, and this is kind of what he's like anyway. A man, now in mid 70s, whos always kind, happy, whistling, singing and always reminds of Baloo the bear from the Jungle Book. At least those are my memories.

Today, he's still mostly that person, but the degeneration is showing. I'm constantly asking myself how much time to we have before he doesn't know who I am.
The situation is Compounded by the fact i'm 200 miles away.
My Mum is providing the support with my brother and his family also nearby.

I know there is no cure.
So without waffling on more with my story, I'm after one thing:

How can I make best use of what I have left - however long that is.
I ask for ideas and even things to talk about.
Nothing is off limits.

MG
"look for the bare necessities, forget about your worries and your strife"

p.s. To this disgusting disease : * * !

psg712

My heart goes out to you. Sometimes it's the perspective of someone who hasn't seen our LO for a while that jolts us into realizing how much they have changed.

Things to talk about ... whatever interests him. If he doesn't initiate conversation, start with what's in front of you: today's weather, a meal you are sharing, a picture on the wall, a puzzle or game you are doing together. It's really hard, but try not to start sentences with "remember when we ..." (took that vacation, adopted the puppy, visited uncle somebody, etc). It's amazing to me how our minds want to stretch back to the past or ahead to the future. PWD cannot do that effectively.

I've had to learn with my mom to focus on the present moment and enjoy the time together right now, even though she won't remember it an hour after I've left. She can't identify me as her daughter, but she smiles when she sees me and says "aww" when I have to leave. There is still a connection, at least for now. Savor the present.

MemoryGuardian

https://alzconnected.org/discussion/comment/225192#Comment_225192

Thanks - thats eyeopening.

I think it will be hard to "not remember when". As a son there are so many happy memories I want to reshare. I think thats whats going to be so hard.

I'm fortunate that my dad bothered to lug around a massive video camera (back then its a VCR on a trolly and. camera the size the bbc would use) round the world in the 80s an while living in the middle east. So, oddly we have a ton of video though 80s and early 90s with all of us as family in various locations, in addition to literally thousands of photos of places that probably dont exist anymore. Its with sadness that he will struggle to tell me the amazing story behind them. I support its ok to ask about these memories, until its no longer comfortable.

Right now things are ok, mostly. Its early so i think were in ES. But its complacency worries me: Saying we'll do something in a year or whatever. Living away you'd think id notice it more however despite being away I make regular trips with my family and have done for years. However, now more than ever thats getting financially harder.

With a full time, challenging job i enjoy and family of my own, its frighening, how fast that time sails by and that in itself is a worry: try and keep focus on quality time i have.

M1

welcome to the forum Paul. The other thing you can do is make sure your mom has adequate support. Being the primary caregiver for a spouse with dementia is very difficult, and since you live distantly she may not tell you frankly how difficult it is.

These early days are the time to make sure legal and financial matters are squared away- she needs to hold his powers of attorney for healthcare and finances, and there needs to be a backup plan in case she can no longer function as the primary caregiver. Hopefully you and your brother can be on the same page about these things, but that’s not always the case.

Glad you have good memories to sustain you. It’s a tough time with a lot of ambiguous loss.

psg712

https://alzconnected.org/discussion/comment/225198#Comment_225198

Yes of course if he is still able and interested to talk about the memories, by all means enjoy them together. Knowing that his ability to do this is temporary makes it that much more a treasure. Of course that is true for all of us, in every relationship, but dementia makes it so much more apparent. Love to you and your dad. It's obvious how much he means to you.

Anonymousjpl123

it is great you have those videos - what a gift. Your parents may really enjoy seeing your these one day, even if they don’t quite remember. Also one thing is showing your love. I have found that walking into MC with a positive feeling can lighten everyone. It is not easy. You can be a huge lift to your family as they live through the day to day, especially when you show your love and support. I have a sibling who visits twice a year or so and it makes a huge difference. It lifts my mood and my mom’s.

mabelgirl

Can your brother set up a video chat for you and your dad and mom? This I believe is more important to us to see our LO by any means. Phone calls can hide stuff. My mom loves to video chat her friend. She used to be able to do it herself but now the iPad just frustrates her.

MemoryGuardian

Thanks everyone for the messages if support.

I was fortunate to meet my parents on Sunday and despite it was unplanned, it was amazing to see them both and offer some perspective on how things are.

My dad seems much like himself which was massively reassuring. However nevertheless the past few days have made me question so many things in my life. Like why I'm so far away, and how best to spend time with him, as well as thinking of him day and night.

The next day when after they'd got home, he'd sent a text just saying how much he enjoyed the company, particularly as it was unplanned and a nice unexpected treat. I was thrilled, so much so I called him right way, not a text or a WhatsApp, a voice call right there because, I can. I was on the way to do a school pick up and it was awesome to chat.

The more I look at the past years the more I see the difference, subtle perhaps but still change. Seems so slow when I see him regularly that it's difficult to see the change. Perhaps it's for this reason that I was in a state of denial for so long and that meeting with his past friend that really jolted me to what's going to happen. It's this certainty that's to upsetting. The hopeless knowledge that it's a downward trajectory and every moment is the best it will be at that point.

Right now he's mostly himself. Hes happy, knows what's going around him and in the world. My mum says, it's little things. Looses stuff all the time, forgets things. And that's what's hard. Most of this stuff are things we can relate to but in the past year, it's the same stuff just getting worse and more frequent. It's going to be so hard when that progresses.

My mum has already commented on hard it is right now. The constant asking for where things and so on. I asked her what her plan is and put her straight with facts it's going to really push her. But I explained, taking pressure off by stopping work and having more time I hope will make that easier.

I think I'm starting to see this journey as an emotional rollercoaster. I'm not looking forward to one bit.

I've decided, thanks to comments, to reach out way more, calls, video calls and messages, on the basis that short and sweet is better way to go, Not just to dad but to mum also as she needs supporting too.

Life just goes on bulldozing through time whether it's good times or bad.