Just saying hello

jackdaniels1960 · March 19

New to this. I’m Jack and I recently retired to stay home and take care of the wife, who is in the mid stages of Alzheimer’s. We do ok mostly i guess. Sure could use a little more of her boys help. It’s a shame but they just don’t know how bad she’s getting. Cause when they do come we try our best to act normal I guess. Unless you live with them, you have no idea! Ok, I’m just venting. I need to be thankful for what we have now. Because I know it’s going to get way worse! Thanks y’all and God bless us all🙏🏻

midge333 · March 19

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.

M1 · March 19

Welcome to the forum Jack. The kids won’t see what you see. I gather they are her kids from a previous marriage? Prompts me to ask whether you have your legal affairs in order such as powers of attorney, etc.? Getting those things straight on the front end can prevent family feuds later on.

read a lot of threads and you will learn a lot, you have come to a good place for advice and support. Very hard to be a spousal caregiver.

SSHarkey · March 20

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.

Jgirl57 · March 20

Welcome Jack. Certainly not the retirement we dream of huh? I am glad you found our group. Your days will be different and it may take a while to find the new normal. With the kids you may have to be specific and suggest they take her for short outings without you( maybe ice cream or coffee) . Hopefully you will find this forum helpful

harshedbuzz · March 20

@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

Belle60 · March 20

Hi and Welcome ! It’s difficult for family to understand if they only visit for short periods of time so I try to have open and frequent communication with the adult kids. It’s hard for them to deal with what is happening to their parent.

Can I ask what made you decide to retire? I am struggling with “when” to retire, my plan is to retire next year but I feel bad leaving him every day to go to work He is not yet to the point he needs 24 hour care

SDianeL · March 21

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

FTDCaregiver1 · March 21

Hi Jack - Early on, DW really wasn't aware of what was happening to her. Her side of the family, nieces especially were close to her, prior to her disease. They stayed away, so it was left to me to figure things out. I learned from them they just didn't know what to do, they were grieving as well. I invited them to our home, with DW mainly pacing around quietly, discussed her illness with them, allowing them to ask questions. Afterwards, I remember that first summer, even had a few cook-outs for friends and my family, her nieces showed up with DW hanging from my arm. It was good to see her nieces kidnap her for small walks around the yard. Afterwards, I kept an open-door policy and regularly shared videos and updates with them via my phone.

concerned_sister · March 21

https://alzconnected.org/discussion/comment/202748#Comment_202748

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?

RickM · March 22

Communication is the key. It's best to get everyone on board that is able and willing. Make sure legal documents are in place and that family knows what is laid out in the documents. Hopefully you all will come together.

ButterflyWings · March 23

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.

https://www.smashwords.com/books/view/210580

rplourde50 · March 24

Hi Jack. Comforting to have groups like this with whom you can commisserate .

LJCHR · March 25

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

upstateAnn · March 27

My life became much much easier when I shared the truth of my situation with the adult kids. How can they know how much help you need if you put up a front? I wrote and plan to write more unvarnished reports on the dad’s health. I told them a few weeks ago that I needed a break and they should plan for a three day stay with their dad while I go away. Of course, they more than rose to the challenge. TELL THEM WHAT YOU NEED! They will almost certainly surprise you with how they will step up.

Just saying hello

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