BurntCaregiver - Children's motivation to see a parent is not money. It is a combination of time, other family obligations, geographical location, and own personal ability to deal with the emotions of seeing a parent dying. I hated to know that my mom could die anytime when across the country from her. She was not able to hear or understand anything on the phone. Wish we had Zoom and Facetime at that time and the local brother capable of using it. But no, I could not financially and time wise jump on a plane every time I was told she might pass. She was in and out of hospice a few times. I kept my scheduled flights a few times a year. I talked to my brother on the phone and sure he conveyed some family "news" from my end to my mom. Fast forward 10 years later, my MIL is on my side of the country and we are overseeing her care. My husband's siblings live out of state, have careers and families. Yes, it would be nice if they had talked to her more on the phone when she was capable of conversing or visit her more often but I understand there are other obligations. I was in that position at one time too. I am only happy to fill in for the oversight of her care along with my husband. They are likely to have end of life obligations with their in-laws in the future as well.
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.
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.
Really? Nanabix...just know that if you read this that we are thinking about you and believe you have good kids that are struggling with their dad's decline too. Keep the chin up. Call them. Talk to them. Ask what "family news" of theirs you can tell their dad about. Ask if they can find time to get away from work for a few days as it would mean so much to you as well as their dad. And no, don't feel like you have to reply to these different posts. You first priority is your husband who is in hospice.
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.
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.
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.
@ venting . I believe there are some that can’t handle seeing parents decline . My brother was one of them . What made it so easy for him to “not lift a finger “ is that I was doing it all . I kept my parents alive longer than they would have lived without me helping them .
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.
Reply to elisny response ….Why does someone have to overcome sadness ? Can’t they be sad and grieve and act humanely at the same time ? Isn’t that what most of us are doing ? Isn’t that why caregiving is so difficult ? I wish it was that easy to “ Just get over it “ and do the caregiving without the feelings of heartbreak , grieving , guilt, sometimes feeling abused , anxiety , depression , frustration etc . If it was that easy , this forum would not have so many burnt caregivers looking for support .
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.
Thank you so much. I’m a fulltime caregiver for my Mom who has dementia, and I’ve only been on one weekend get away in 3 years. Im co-executor of my My Moms Will but I’ve been asking my brother to let me see or give me a copy . My Dad changed the will before he died but neither will tell me what the change is. I have to start planning for my future and he still won’t budge. Unbelievable. Thanks
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.
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.
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.
"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.
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.
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.
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.
, I’m glad you and your brother are doing well . Thank you for sharing , it gives hope to those of us in the muck right now .
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.
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.
I wish it was that easy to “ Just get over it “ and do the caregiving without the feelings of heartbreak , grieving , guilt, sometimes feeling abused , anxiety , depression , frustration etc . If it was that easy , this forum would not have so many burnt caregivers looking for support .
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.
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.
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.