Just saying hello

Welcome! It took our kids a while to see what I was seeing. Visiting for just an hour or two, it is easy to miss it in the earlier stages.

Hello Jack! M1 is right! Blended families definitely need clarification regarding this. As her husband, I would recommend you send the kids regular reports on their mom. Doesn’t have to be all the bad changes. But an accurate account of how she’s doing. That may not even respond. But they do need to be kept aware. Especially since she will be trying to put her best self forward.

@jack kodrin

Hi and welcome.

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

It's not unusual for a primary caregiver to feel abandoned by other family members in this task whether it's a spouse feeling let down by adult children or one sibling be charged with the lion's spare of looking after a parent. You aren't alone in this. That said, blended families can complicate the matter.

As a non-household member, it can be hard to get a read on how a PWD is functioning. Often the spouse/CG is supplying so much scaffolding through the day, that a true baseline of impairment is difficult to parse. And if your DW is showtiming-- maintaining a facade of capability for a short period-- when they visit, they can't know how she's doing.

You refer to these individuals as "her boys". Has your wife chosen to be open about her condition? Many parents prefer not to burden their adult children initially. Do they have the impression that you wish to lead on this and don't want to interfere? Or are they younger adults whose job is-- and should be-- launching into adulthood with a focus on education, career and relationships with peers? If they're younger, they may have not experience with dementia or the impact it has.

What does help mean to you? And have you asked for it specifically?

HB

Read the book "The 36 Hour Day" that a nurse recommended for me. Have her boys read it too. It really helped me.

Hi Jack, welcome.

SSHarkey,

One thing I did was put the Tam Cummings dementia stages on to a spreadsheet and sent it to my siblings, so we all kind of had an idea what the road ahead would be. Perhaps a week or two later I sent a copy with my assessment of where he is as of the current month. I'm wondering if perhaps that's something Jack could do and update them as progression warrants?

Welcome to the group that no one wants to need. But as you can tell, it is a wonderful resource and full of people who are, have been, or will be going through similar experiences to you and your LO. This is simply the best place there is, for accurate information on just about anything dementia may throw at you.

A certified elder lawyer (CELA) consultation is one of the most important things to do immediately, to put proper documents in place while your LO can still sign them. If already done, they may need to be reviewed and adjusted since dementia means she can no longer be your POA, executor, etc. Doing any travel or "bucket list" items that you can now, is a good idea since progression is inevitable and with unpredictable timing. Financial mismanagement and driving (danger!) are some of the most risky things to address.

Here is a free article (short book really) that many of us read when we first joined this forum. Very helpful to understand what may occur, though each PWD is unique so you may never experience some of the behaviors and situations that others do. I found it better to know what "might" happen, and why, so I could be prepared and I shared it with in laws though there is no evidence they read it. You can't always count on help from expected people and sources, but there is help and support available including here. You are not alone.

Jackdaniels1960 - We are on the same wave length. I just posted the below today:

I continue to go to this site numerous times a day - the empathy and experience of the participants here is the best support I have found. I am in a place now where a lot of you have found yourself in - I'm alone in this horrible ambiguous grief cycle called Alzheimer's.

Bill posted "The Calvary is not Coming" and I read this over and over. He posted this below:

After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear. 

I think I have reached the point of realizing I am on my own......and it hurts to the core.

The kids want to know how Papa is doing. You tell them and they don't want to hear it. I'm exhausted from hearing "You have to focus on the good days". Who among us caretakers don't focus and live for the good days. I also hear "Papa looks like he's doing fine". My response to that wants to be walk in my shoes each day. After 3+ years of this, I am ready to just be on my own and not bother any of the kids with how Papa really is. They really don't want to know.

This discussion forum is probably the lifeline for a great number of us. Thank you for being here and understanding what it's "REALLY" like to live our nightmares.

Prayers to all of us.

Another great resource for me is https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf