Why do adult children become distant when a parent has dementia?

Having a cognitive disorder seems to 'chase' family&friends away. Before my mother's hospital fiasco 2 yrs ago, her friends and my sister called every day. Then I somehow became moms social director. My sister started using me as a messenger. "Tell mom hi" she still expects me to arrange phone calls and rarely comes over. I find it hurtful and downright rude. My mother is much better and has feelings.

How close does hospice think hubby is to the end? Are your kids in touch with you at all? Do they know he's on hospice? Did you have close relationships with them before dementia hit? Did your husband?

If you are looking for support and wanting to tell them all about his condition, I'd probably say don't do it. My kids say they don't like it when I tell them the nitty gritty of their grandma's decline. So, give headlines, not the gory details. Don't ask them to do anything. Don't give them any guilt trips.

As I'm sure you know, dealing with dementia is tough. Maybe your kids are not comfortable with it and I really don't blame them.

When he is getting near the end, alert them and invite them to come say their good byes.

Best of luck.

First it depends on your relationship. I did not have a good relationship with my parents so I never saw them.
however sometimes people do not visit because it is hard to see a loved one deteriorate. Even harder if they don’t recognize you.
personally I can’t be in the house when my wife cry’s in pain.

You will never know why exactly. Am sure you asked but unfortunately they will continue doing what they want.

I've had a bad thing happen in my life where I needed the help I gave to family and friends in previous years. Not one person did. It was very painful and sobering. I've had to accept their lack of help and adjust my relationship with that person to move on with my life.

It is not just children. It is former friends and relatives of all kind. In the U.S. few people understand dementia and most are under the impression the person suffering from dementia is "no longer there," "doesn't care," and "has no feelings." Such an orientation is cruel.

While I understand it is painful to see friends and family members suffering from dementia, from my perspective it is the humane and compassionate thing to endeavor to overcome our own sadness in an effort to contribute to the well-being of others.

"Some just cannot handle seeing parents decline."

That might be what some people say (because it sounds so sweet and lovey-dovey heart; what a delicate, sweet, sensitive heart they have). But it's a lie. They can stand it. In fact they can stand it so much, that they won't lift a finger (not even from a distance) to slow down the decline.

Some people just do what they feel capable of doing, some just can't handle the decline, some have lives that are overwhelming without the added stress of something like this. Everyone is different.

I carried the lion's share of the burden of care for my parents while my brother did very little. I don't believe for a moment that he cared less than I did, but he was in the middle of a divorce, was working a stressful job, and trying to keep a relationship alive with his teenaged daughter. My kids were gone, and I was a stay-at-home mom, so I had the flexibility he didn't.

However, whenever I needed him to do something to help me with my parents, he always did it, but I had to ask. Don't ask me why, but he was OK with that where he wasn't able to do anything for them spontaneously. It's OK, and I think my folks understood in their way, although I know they worried terribly about him and his situation. In hindsight, I think my brother was very depressed as anyone would be. He'd never really had a crisis to deal with until his wife decided to kick him out of his own house, and it overwhelmed him.

Now our parents are both gone, and he and both reminisce fondly about both of them. His divorce was finalized a month ago, he's met a wonderful woman who loves him, and I closed out the estate today after taking over my parents' finances in 2018. I'm just glad that we're all OK now.

Children sometimes find it more difficult than their spouses even to accept the idea of their parent dying. You likely need their presence more than he does. Ask them if they can arrange to visit. You'd love to see them as would your husband. Tell them that it would be helpful for him and you to see the family together. Be aware though that with careers, grandchildren, and other obligations that it is not always easy to block off time to see the parents.

Zoom or Facetime are great. Maybe if you don't have the computer or the knowledge, you could get someone to help or one of the adult children could get there with a laptop to help. That way he could see everyone's smiling faces and if he can't hear/understand, you can interpret the conversation for him. It doesn't have to be a long conversation as he may not be able to handle that.

Hospice patients want to know that everyone will be fine when they pass. Our neighbor's hospice nurse said short visits are great but tiring. What they like more is to hear is laughing and conversation in the background to assure them their family will be fine after he is gone.

What I notice OP, is that you ask why your children aren't more in contact with you and your husband. Many forum members kindly replied, trying to help. And not a single message from you OP, not a single sign of gratitude, no contact from you.

Today we are a very mobile society and dependent on devices to keep in touch, maybe reach out to them via facetime or another venue.

Aside from the above reason, perhaps they are not comfortable dealing with their own mortality, as much of the reasons/timing of death are a result of our gene pool, passed on from generation to generation.

Or, they harbor some unknown resentment?

Why don't you just ask them? That is what I would do, clear the air.

@venting

"Crises, illnesses, bring out people's true nature".

You forgot the one thing that REALLY gets those true colors of a person to come out.

Money.

Well...the reason my sibling is not involved is because my parents' pockets are not deep enough. Sibling has very wealthy in-laws who are generous. My sibling wants to be totally reimbursed for all expenses. Sometimes it is all about money.
Sibling feels that they are "owed" for dysfunctional childhood.

Nanabinx: Although it's difficult to speculate, it could be for a variety of reasons, e.g. fear of providing care and not wanting to see their parent unwell are a few possibilities.

This very thing has happened to my sister. Her husband and sister in-law don't do anything to care for their mom leaving it to my sister. It has been really upsetting for her and caused her a lot of resentment. She is literally having to do the worst parts of the job, personal care. Her MIL has advanced dementia and the kids don't want her to live in a home with strangers for reasons I'm not sure. They are quite opinionated and I'm sure they've heard stories about these places but automatically think it happens at all elder care homes. While I should probably just stay out of their business how can I let them know there are resources they can check out to get accurate information? They don't listen to what I've learned about places through the county. I love my sister but it is making her an angry person when she comes to see family. This is Especially important now because our mom is showing signs of dementia. I've been proactive on seeking advice about alternative living situations but how can I convince others that mom would be safer in a community setting?

Fear of Indentured slavery? Being coerced into paying someone else's living expenses? Afraid of commitment? Facing their own mortality? Too busy to care?

I have seen the change in declining visits with my mom. She is now in 24 hr care, increasing dementia, irritability, negativity and anger is off the wall at times. My son lives 10 min away, and I feel his reason for not calling/visiting is that it’s very hurtful to see the change in his once vibrant and loving grandmother, who now talks about everything negative in her life. Both sons have had wonderful lifetime memories with both sets of grandparents and she is the sole remaining one at 93. While he’s had his own personal struggles that he has overcome, I think it’s very painful to see this happen to his grandmother. However the other son who lives 8 hrs away, is always getting calls from grandma, (he also has an infant child), and she loves talking to him. I always encourage our son to go visit her or give her a quick call, but that’s up to him. Knowing the 1st son’s sentiment, I truly believe it’s hard and I won’t force him, only suggest. You may try talking to your family member, but don’t force it upon them. Good luck.

Think it’s a few of things. First off, it’s just so heartbreaking to watch someone you know as capable deteriorate and then you have to try and be upbeat for them. It’s not something you’d look forward to doing, therefore visits become less.

Secondly, at times it seems so futile. The patient doesn’t know who you are. They don’t know who they are. They talk about things that never happened. You are never sure if your visits are meaningful.
And this brings us to the third reason…

Sometimes visits are not just seemly futile, they are downright hostile. The patient is angry, aggressive, complaining about stuff that may or may not have occurred. They holler to go “home” but their idea of home doesn’t really exist anymore.

The short answer is it’s hard and heartbreaking.

Im not saying these are good reason to stay away. Just my opinion of why some stay away.

Here's the cold hard truth for myself anyway: She doesn't remember when I DO visit, and every time I visit, she first fusses about me staying away so long (I see her in MC every Saturday), then she fusses about anything I try to talk about, but when I try to talk to her about what she wants to talk about, she has nothing. I sometimes skip a Saturday just because - my gosh - I need a little time of my own. Between work and church, and home and farm work, then going to see her every Saturday, I am left with pretty much no time to unwind. And since it doesn't seem to matter whether I see her every day or once a month - she's not going to be happy no matter how often I am there - the temptation is to not go as often. And I hate that I feel this way, but it's the hard truth.

What would bother me is that they aren't coming to see YOU. You need their company and even a little respite.

Not all adult children become distant. Why don't ask them?
Good Luck

This Dementia is such a hard disease to watch someone to come down with. My uncle came down with Dementia a few years ago. My uncle and l were so very close. About a year before he passed away, he did not know who l was, even looking me right in my eyes. I about had tears in my eyes as with someone so close yet did not know me. No l did not neglect my uncle, l kept talking to him and sat with him and tried to brake the ice and make a connection. Yes, when he passed l was, and l am still am heart broken.

I don't know about a father but I do know about a BIL. It is hard to watch him go down hill. We went to see him yesterday and he was outside with others releasing balloons. So when we went in the nursing home to bring him his diet pepsi he had another view of releasing balloons he said a helicopter came over and released all the balloons. Its so hard listening to him make up stories that never happened.

We learn to go with the flow. In other words you don't correct them. You don't know what to say to them because you don't want to get them upset. So we agree with him.

It is emotionally draining because they want to go with you but you have to direct them away from walking out with you.

I hope they come see their father but they may just want to remember him like he was before.

My husband, his brother just can't be in the nursing home visiting that long because it is so hard to see his brother like this.

Prayers

It is emotionally draining. They may not know what to say and that scares them. It is sad to see someone you loved deteriorate before your very eyes. Some folks prefer to remember them as they once were. Those of us that are their caregivers don't get that choice.

Were your children in better contact when their father was well? Tjey may not know how to relate to him with dementia and they may find it too depressing and scary to see his decline.

I should visit my mother of 93 with dementia more but I don't. She lives in a memory care home, the best in the city, and gets good care. We did our best to keep her in her home until it was obvious that this was a danger to her, her caregivers, and the neighbors. She is now unhappy, angry with us, her memory is gone, but she can inflict verbal pain well. It took months of counselling for me to recover from the dual blows of moving her and my brother dying from covid complications around the same time. I wish I could visit more than once a week or two weeks, but it is very hard to hear the one you love say things like "what did I do to you to put me in an institution?"

I'm sorry that you have to face the way your children are responding to your husband's situation.

I am in the same boat. In fact, one daughter, after finding out that her father has dementia, declared "you aren't the kind of grandparents we want in our children's lives" and moved ten hours away. She won't even acknowledge her father's text messages (let alone phone calls), no card for his 70th (and most likely last) birthday, nothing for Father's Day for the last few years.

Yep, it hurts. But in a way, I feel like just as their father was a manipulative person, they have turned the tables and are now doing the same to him. Some sort of game of payback.

My biggest concern is that when he passes, they will look back at all the missed opportunities and have to live with the regret.

Not all children become distant, but some just can't handle the change and it is just easier to remember the person that was and not the person they would see now.

There are so many reasons to choose from for why adult children rarely visit or call when an elderly parent has dementia. Or even when their elderly parent is in fine health.
Many times it is due to the type of relationship they had in the past. A person may have several siblings in a house growing up and they all had a different experience.
Adult kids have jobs and families of their own. They put some distance between themselves and an elderly parent that's getting needy because they don't want to become the Designated Caregiver like I did. The one who has all the responsibility put on them even if they don't want to because it's convenient for all involved. So the others keep a safe distance because they don't want to be asked to help. No one wants to give up their vacation or their free time to sit and listen to their demented parent repeat themselves continually, confabulate, and make a mess. So they keep away.
Then there's the abuse that so many of our elderly LO's with (and without) dementia engage in with their adult-child caregivers. The villifying, lying, instigating, gaslighting, guilt-tripping, and bullying.
There's the constant negativity, the gloom and doom, and the misery spreading too. So after spending an hour with that elder the effect they produce on a person is either you want to drink yourself into a blackout or find a cliff to jump off of.
You have the ones who panic because they don't know how to relate to the new mom and dad with dementia who is now sick.
I worked for a client whose DIL was an RN. She came with client's son to visit. My shift had ended and I was heading out. Her MIL crapped herself. The DIL RN went to pieces and flagged me down on the road. I pulled over because I recognized her. She asked if I could come back and change her MIL. I told her no that my hours were up and she's an RN. Surely she learned how to clean can and change a diaper at one time or another. She also had two children of her own. Cleaning someone up is not rocket science.
There are all kinds of reasons why family stays away and really most of them are full of crap.
Even if your adult kids can't communicate with their father anymore, they can still communicate with you, their mother who does not have dementia. You need their support and they should give it to you in whatever ways they are able.
Call them and talk with no expectations. Then listen. You'll probably be surprised by what they have to say.

You don’t say if they used to visit often before his illness ? Did they have a close relationship with your husband before his illness ?
Did they visit often and now it’s too difficult for them to watch the decline any longer ? Were their visits not pleasant ?

I’m sorry for you . I’m sure you could use the support and some respite if the adult children would come visit .

My FIL has dementia. Never was a warm person , Did not pay much attention to my DH or our family especially after marrying his second wife , FIL wife died , we had to pick up FIL take his car away , put him in AL by us which was next to impossible to pull off. Since we picked him up a year ago , FIL wants to be a close knit family . Demands family dinner each weekend , which we never did before , or he’s leaving AL. He’s also very difficult and stubborn, refuses hygiene etc . Expects to be entertained , wined and dined at restaurants and taken on vacations . He wants us to help him keep his “ independent lifestyle “ . It’s the same conversations about showering and he keeps wanting to leave and get his own apartment . DH is burned out . My daughter refuses to visit grandpa anymore due to she sees how it is stressing out her Dad. She doesn’t see the point , in her eyes grandpa basically ignored all of us the last 20 years , which is most of her life , while he immersed himself in his step children and step grandchildren . She says you reap what you sow . My son reluctantly sees him once in a while because he knows FIL expects it .
My husband struggles seeing him even on the rare day that FIL isn’t complaining. DH says they have nothing to talk about . DH had cut down visits to twice a week . I go with him on the weekend visit . Now DH has cut the weekday visit shorter and shorter and has been skipping them as well sometimes .

I'm sorry you are going through this.
My mother is in a skilled nursing facility now, three months. I took care of her for a year after my father died and before I brought her here to a SNF. I have two older brothers. One brother did not even come to my fathers funeral and still hasn't seen mom since the Christmas before he died. He lives out of state as do I. The other brother helped a little while I was caring for mom but has only seen her once since being in the SNF.
I guess its like everyone here says, life gets in the way. The brother who has not seen mom since before dad died, I know, is scared to see her. Mom was always this beautiful, energetic, very smart and capable woman who could do anything. Now, she looks nothing like she did three yrs ago and can't remember what she said 5 minutes ago. When we talk, it breaks his heart to hear how she is and I think he doesn't want to see it. I also think it hurts mom very much but she doesn't understand it. I think she is starting to forget him and that breaks my heart. He says he wants to see mom before she forgets him and I tell him he should hurry and get here then but I still haven't seen him.
My grandmother (moms mom) had this same disease. She was also in a SNF. Mom saw her every day and talked about her a lot. But, I am guilty of not seeing her very often at all. I had moved away and when I saw her, she did not remember me. I think mom was probably the only visitor grandma had and I wish everyday I saw her more and knew what I know now. I ask God for forgiveness for not seeing her more often and telling her I love her.
I get mad at my brothers for not seeing mom but it does no good. I know this is a journey mom and I will make just like she did with her mom, alone. I hope I'm enough for her.
I pray for you.

A lot of people can not deal with a ill person it forces them
to reckon with their own mortality and vulnerability .

Because people with dementia can be dangerous and can no longer be logically reasoned with!