As the daughter of a Lewy Body Dementia mother....I must say this is the worst experience of my life. I have lived through the death of my two young siblings as a teen, the early death of my dad and later I got divorced from someone I dearly loved and was with 20 yrs….but this is even worse. I had a close loving relationship with my mom…flawed as she may have been. I have stepped up and I am the involved loving daughter who is POA and her caregiver/helper. Not everyone has the strength to watch a well loved parent become a stranger in front of them. My 4 yr journey has changed my retirement plans, and my living arrangements {sold my retirement condo to be near her}. I have needed counseling to adapt to this new normal. Try to not judge how others handle this stress. We are all wired so differently. Ask the kids to be more involved. Explain what you need. Then accept what they can handle. Good Luck.
Some just cannot handle seeing parents decline. Also, lives get busy and out of sight out of mind steps in. You might want to remind them that facetime exists. This is how I keep in touch with my grands. Prayers
Ask your adult children why they are distant and not supportive of you and their father now that you need them. We'd only be speculating. Do know that it's very difficult for children to witness their "indestructible " parents sink into the depths of dementia and get lost into another world entirely. It's easier to avoid that scene than to deal with it, honestly. Some of us have no other choice, but those who do may choose that option. We're not all as strong as we'd like to portray ourselves.
I'm sorry you're dealing with such a difficult situation in the first place. Hugs.
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.
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.
Sometimes it's not a bad thing for them to stay distant! Lots of posts on here are about adult children who insist on making trouble but do nothing to help their caregiving parent.
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?"
This is so personal for all of us. For some people, it’s important to be at a parent’s bedside.
For others, it’s extremely difficult for them and this doesn’t mean that they don’t love or care about them. They would rather remember them when they were well.
I read your profile. I am so terribly sorry that you lost your son.
Wishing you peace as you continue on your caregiving journey.
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.
I'm sorry you're dealing with such a difficult situation in the first place. Hugs.
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.
What would bother me is that they aren't coming to see YOU. You need their company and even a little respite.
to reckon with their own mortality and vulnerability .
This is so personal for all of us. For some people, it’s important to be at a parent’s bedside.
For others, it’s extremely difficult for them and this doesn’t mean that they don’t love or care about them. They would rather remember them when they were well.
I read your profile. I am so terribly sorry that you lost your son.
Wishing you peace as you continue on your caregiving journey.
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.