My wife's kids live across the country.

Danno99

So my wife has early onset Alzheimer's, and it's not getting any better. She was previously married and has 2 adult girls and an adult boy from that marriage. We live in NH, and her kids are in Va, Az, and IL. They are all aware of the situation, and they try to visit once a year. I appreciate that they make the effort to visit once a year.
The problem is that they are simply not up to date with anything going on with her mom.
I don't know if it's up to me to give them updates on their moms health, or should they try and contact me/us for this information? They certainly don't reach out very often. I text them as much as I can with any updates.
I'm trying to put myself in their shoes, and I ask myself what would I do if my mom has alz, but lives across the country? Would I just leave it up to my step dad to take care of her?
Is there anyone else in this situation?

THanks for any input!

Dio

Perhaps, just ask them how often they'd like to get updates—e.g., only when they ask for it, or whenever you deem fit, or only when there's a significant update to relay? Just see what they're thinking. We can't second guess what's going through their minds, really. I don't want to make excuses for them or speculate, but people are generally preoccupied with their own lives/problems. Even with the best of intentions, they may not know what you'd prefer either. Might they be bothering you by inquiring? Might they not want to know (like burying heads in the sand) for fear of how it may affect them? Many of my friends/family say the same, just don't know how to approach me or how often. I get it. And there are times when I don't want to be bothered. And there are some individual family members who have never once asked or asked once a year. I just let that go. I have no kids, so I don't know what might be my expectations. However, when in doubt, I'd ask. Not sure if you're expecting them to uproot their lives and move closer to partake in their mom's care. But a healthy conversation may alleviate any misunderstandings.

fmb

It is good that her children are involved in her life. A periodic group email initiated by you could be a good way to keep them informed. You can judge how much information to share. I would not necessarily wait for them to ask, since they are undoubtedly busy with their own lives. Not being familiar with ALZ, they may not know what to ask. It doesn't have to be strictly about her, either. It might help to include how you help their mother. Caregivers need family support, too.

My mother lives in KS, and we kids live in MO, PA, and NC. My brother (in NC) has DPOA and all three of us are on the healthcare POA. He is point person with her MC facility and hospice, and flies out to see her in person and take care of any necessary business every 2-3 mos. He sends my sister and me a group email or text immediately when any serious issues arise and emails every 6 weeks or so with general updates. We all agree on how he is handling her care, and he seeks our input for major decisions.

Lgb35

my son lives across the country too. He never asks how his dad is doing. We are in the earlier stages and I don’t think my son understands what this diagnosis means. He had never experienced it and during our visits my DH is great at covering.

M1

Welcome to the forum Danno. Sounds like you maybe want something from her adult kids that you're not getting, or have some expectations of them that are not being met? You might want to think long and hard about what your expectations of them actually are and then decide how you'd like to discuss that with them. Do you want them to be in contact with you more, or with their mother more? Do you want them to visit more often? Do you want financial help, more practical help?

there are so many factors that can play into this, including what kind of relationships they had with their parents and with you pre-dementia. Their own personalities will also play a role, as well as what's going on in their lives otherwise. They may not understand much about dementia, particularly early onset. I think all of us primary caregivers find this a lonely road ultimately. Family and friends tend to fall away as the disease progresses. So thinking these things out ahead of time may help clarify what you want and need.

Quilting brings calm

I found your other posts and comments. Am I right in thinking that your wife was diagnosed right at a year ago at the age of 65?

Short answer - yes, as her spouse and as the local primary caregiver, it’s up to you to keep them informed

First, With her being 65, her children are somewhere between the ages of 20-45. They may never have had to deal with dementia up close and personal before and therefore don’t understand the situation. Especially if a) she was diagnosed almost exactly a year ago and b) they visit once a year. They aren’t seeing any changes. So they don’t realize there are any. Invite them to visit soon and tell them it’s because early onset proceeds more rapidly than if she had gotten it later in life. That they will want to see her more often before she gets worse- and that she IS getting worse

My mom’s dementia manifested when she was in a different area of the country. I didn’t ‘see’ it during phone calls. Only when I was there due to her medical emergency did the situation become apparent to me.

Second, one of your other posts refers to her daughter as telling her mom she needs help and you being annoyed that they just didn’t let you handle all the decisions as her husband. If you mentioned that to your wife, it probably made its way to them. With some poor communication. Maybe they are now letting you handle it all. Reach out and let them know that you DO want them involved in things.

Third, second marriages and children from the first are often in conflict before the existence of any medical issues. Could this be the case here? Again, reach out. Get their phone numbers, call or text.

ButterflyWings

https://alzconnected.org/discussion/69785/my-wifes-kids-live-across-the-country

Do you have Durable POAs in place? I hope so, if not, that is an urgent need. Wills, Trusts, Advance Directives need to be water tight. Hopefully you will not have the opposition that some 2nd spouses experience in later stages, but in your current situation, sometimes it is best to let sleeping dogs lie. It can turn into a contest for who will control assets once she is clearly not able to function or have any relationship with them. Many of our forum mates have experienced the "those who are useless are useless" reality where offspring and siblings or other relatives are backseat drivers or critics but never contribute anything helpful like periodic respite support or companion care, or even a kind word or occasional package of incontinence briefs lol. In my situation I kept the door open for a long time and ultimately regretted it. They weren't seeking a realistic role in supporting him or me as he declined and went from awol for years, to suddenly wanting me out.

So, the distance can actually be a blessing. In our case I wasn't expecting anything of them, but definitely did not anticipate nor need the avaricious undermining that surfaced when they thought he was on his last leg and they could pull a coup. Granted, this is the extreme but I am not the first. Steps may do some shocking things when your LO is no longer able to look them in the eye and have them stand down — and it becomes just them against you with property or money involved, even the smallest amount. I hope you never have this experience. And certainly not every post-divorce in-law situation with PWDs unfolds this way. But this possibility should be factored into your decisions.

I would make some effort to update them at least once on the diagnosis and prognosis. And possibly send Tam Cummings staging information as well as the Understanding Dementia article by Ghent-Fuller so they can educate themselves if they choose. Encourage them to learn as much about dementia as possible so they can choose to maybe touch bases with her more often than 1 year since progression will likely always be shocking at that point. M1 asks some good questions for you to consider, and others' feedback above is good too. I would put the Certified Elder Law (CELA) matters in airtight shape quickly, and then let them know their mom is in a category that may progress quickly and if they'd like to see her more before this happens, now's the time to put a plan together that works for you.

trottingalong

We have two children, one lives on the opposite coast and the other 7 hours away. Their lives are busy, working and raising children of their own. I text or call and they always ask about dad. They also call him now and then but most often he doesn’t really want to talk on the phone for very long. They both know I can’t travel to see them, so they and their families try to come once a year to see us. I have no expectations of them. They are wonderful adult children with hectic lives. I provide them with periodic updates, but I don’t often go into great detail or complain. What could they even do? I would suggest reaching out and just asking if they want periodic updates from you. May depend on if they still are conversing with their mother. When the girls do talk to dad, he sounds perfectly fine to them.

harshedbuzz

@Danno99

It’s difficult to know how to finesse this situation. A large piece might be the length of your current marriage and the nature of your relationship with the kiddos.

Is yours a long standing relationship where you developed a bond with the kids when they were younger or are you newlyweds? I’m guessing they’re younger adults and probably consumed with building careers, relationships and perhaps even raising young children. Perhaps they don’t understand dementia and the progressive and terminal nature of the disease.

I think it’s also critical for you to figure out what it is you want from them and what your motives are. To that end, is it that you’re fond of them and hoping to spare them the regret of frittering away this time with her? Or do you want to educate them around the realities of dementia? Is it breaking your heart to see your wife upset that she’s not seeing more of them? Would you like some tangible assistance in the form of hands-on caregiving in order to have time to see your family or friends? Or are you looking for recognition from them for what you’re doing for their mom which frees them to work on their own lives? Are you looking to create a team to help with decision-making going forward or select the best option as your successor agent on her POAs as a Plan B?

I’m not sure if this is something available to you, but the memory center where dad was diagnosed had social workers who did family meetings in the kind of scenario to get people up to speed or on the same page. Something like this could be via zoom or a conference call. If your wife’s medical records are in an electronic chart, that could be shared. If you don’t want them to have access, you could scan the relevant pages and attached in a group email.

Hb

SDianeL

Buy them the book "The 36 Hour Day" and ask them to read it. It explains the disease & what the caregiver has to go through in various stages. Then have a conversation about what they learned from the book. I would stress that early onset progresses more rapidly and maybe they should try to visit more often. I would update them monthly via email or text, or as something important arises. As others have said, make sure you have the DPOA in place, wills & medical POA so you won't have to get their permission to provide care for your DW.