Stuck between loyalty and protecting our child

[Charlotte79]

Hi everyone.
My ex husband 56yo (2 years separated and we get on very well) has Early onset dementia. He is getting worse. 2 things worry me.
1) his family doesn't seem to be wanting to help. His sister refused to be power of attorney and they keep postponing our meeting because they are busy with "their own" family (he has 2 sisters and a brother). I do not want to be his career. We are separated and it shouldn't be my role but I feel like I can't let him down. My empathy is tripping my into a huge guilt ball that is hard to live with. But I am only 44 and feel like I still have a life to live....
2 ) we have a 5yo daughter. He has her care 3 days a week and I worry about the psychological toll on her. She recently is reluctant to go with him but still loves him and doesn't want me to tell him she prefers to be with me.... She is reminding him a lot of things and seem to be taking some responsibility I feel she shouldn't have to at such a young age....
Any help would be greatly appreciated.
Thank you

 

[Grannie G]

She recently is reluctant to go with him but still loves him and doesn't want me to tell him she prefers to be with me...

That is so sad. What a wonderful child.

Does she know daddy is poorly?

How much longer do you think your ex-husband will be able to be responsible for her care? Short visits sound Ok but I would worry about whole day visits and your ex having responsibility.

If possible I would try to space these visits and reduce the length. Your daughter may not realise you are doing this if it is gradual.

You cannot be forced into being the Power of Attorney. You are no longer next of kin.
It`s one thing being kind and caring and quite another being taken advantage of.

I`m afraid some tough decisions are needed and you are the only one who can make them. Perhaps if you do, his family will sit up and take responsibility.

 

[CAL Y]

Your child is your priority. You are not legally responsible for your ex even if his family don’t want to know.
You certainly should not be putting your life on hold.
Dementia can last many years. Don’t sign up for what will become carer burnout.
Take care of your daughter, She needs you more.x

 

[Lawson58]

I completely agree with @Grannie G and her wise words, especially about your daughter spending too much time with your ex. He will not get better and he may not know realise that he can not keep her safe.

You separated for a reason and although that may amicable, that was the choice you made.
He is not your responsibility and I think you need to convey that fact to his siblings, including that you have no intention of being involved in his care.

Families often assume that you will be the carer and will happily allow you to do that IF YOU LET THEM GET AWAY WITH IT.

And please do not consent to having POA as that will give them an extra reason to opt out. It is totally unreasonable for them to refuse on the grounds of having their own families but so do you.
They will do a snow job on you unless you step out of any responsibility.

Tough times ahead but your little girl is so young and needs to come first. Obviously the siblings are her relatives too so this will probably require a lot of tact. I hope it all goes well for you.

 

[SherwoodSue]

Once , moved by compassion you step in to meet a need, all the powers that be will happily leave you there forever. Don’t get in the boat in the first place, or face years of rowing and trauma to your daughter. Reach out to specialist nurses for materials for your daughter. Books etc x

 

[Charlotte79]

That is so sad. What a wonderful child.

Does she know daddy is poorly?

How much longer do you think your ex-husband will be able to be responsible for her care? Short visits sound Ok but I would worry about whole day visits and your ex having responsibility.

If possible I would try to space these visits and reduce the length. Your daughter may not realise you are doing this if it is gradual.

You cannot be forced into being the Power of Attorney. You are no longer next of kin.
It`s one thing being kind and caring and quite another being taken advantage of.

I`m afraid some tough decisions are needed and you are the only one who can make them. Perhaps if you do, his family will sit up and take responsibility.

Thank you very much for your kind answer.
My daughter understand that dad has a brain issue. She is very mature for her age. I already have changed the care a bit to decrease the nights spent there and instead he picks her up from the school bus and takes her to the park for a couple hours then back to my house... we only live 5 min appart.
In regards to how long he will be able to it's the whole question. We don't know.
I am hoping his family will stand up. We will have to sit down and put everything on the table. I just can't stand the thought of him being "abandoned" by his family....

 

[Charlotte79]

Your child is your priority. You are not legally responsible for your ex even if his family don’t want to know.
You certainly should not be putting your life on hold.
Dementia can last many years. Don’t sign up for what will become carer burnout.
Take care of your daughter, She needs you more.x

Thank you. I need to be the rock for her and I know I can do that. It's just so difficult to deal with the guilt of having to make such a choice. But I need to hear it to help me overcome the feeling I think. So thank you!

 

[Charlotte79]

Once , moved by compassion you step in to meet a need, all the powers that be will happily leave you there forever. Don’t get in the boat in the first place, or face years of rowing and trauma to your daughter. Reach out to specialist nurses for materials for your daughter. Books etc x

Thank you. I saw some links to books here so will resource some.
It feels exactly like you say. I am scared of being the one that starts rowing once it gets real bad (I have been the one rowing for years already) I am happy to carry on giving the level of support I have so far but I cannot commit to more otherwise I know I am signing my life away...

 

[Charlotte79]

I completely agree with @Grannie G and her wise words, especially about your daughter spending too much time with your ex. He will not get better and he may not know realise that he can not keep her safe.

You separated for a reason and although that may amicable, that was the choice you made.
He is not your responsibility and I think you need to convey that fact to his siblings, including that you have no intention of being involved in his care.

Families often assume that you will be the carer and will happily allow you to do that IF YOU LET THEM GET AWAY WITH IT.

And please do not consent to having POA as that will give them an extra reason to opt out. It is totally unreasonable for them to refuse on the grounds of having their own families but so do you.
They will do a snow job on you unless you step out of any responsibility.

Tough times ahead but your little girl is so young and needs to come first. Obviously the siblings are her relatives too so this will probably require a lot of tact. I hope it all goes well for you.

Thank you. It definitely helps to be on here as most comments confirm what I didn't want to hear from my brain. My heart wants to help because that's just who I am. But I need to put clear boundaries in place with his family as to what I am willing to do.
I have been preparing factual points to discuss to try to have a meeting where emotions are set aside and we can plan practically what needs to be put in place without judging anyone for their decision.
I am hoping that their reaction so far is because they haven't grasped the issue yet and just putting their head in the sand. And once they realize they will show more willingness to help. Fingers crossed....

 

[Grannie G]

Hello again @Charlotte79

From your posts it`s clear you still seem to feel responsible for helping to sort your ex husbands care with his family.

This is his family’s responsibility, not yours. They should be the ones organising meetings and instigating discussions, not you. They should be the ones graciously asking for your help and being grateful for anything you can offer.

I understand your compassion and good intentions but you are still allowing his family to expect far too much from you.

Please be careful

Once family care has been agreed on and established, you can easily become more fluid to appease your conscience but please start from a solid baseline with his family as primary carers.

 

[canary]

Caring is easy to slide into and difficult to get out of. By the time you realise that you have taken on too much it may be too late and you discover that you are trapped.

Don't take any responsibility on in the first place. It is not your responsibility and your daughter must come first

 

[cymbid]

Hello again @Charlotte79

From your posts it`s clear you still seem to feel responsible for helping to sort your ex husbands care with his family.

This is his family’s responsibility, not yours. They should be the ones organising meetings and instigating discussions, not you. They should be the ones graciously asking for your help and being grateful for anything you can offer.

I understand your compassion and good intentions but you are still allowing his family to expect far too much from you.

Please be careful

Once family care has been agreed on and established, you can easily become more fluid to appease your conscience but please start from a solid baseline with his family as primary carers.

I completely agree. This is not your problem. Step away from any caring, organising or arranging for this man. He is not your problem. I would also get your divorce sorted out. Being in this no-mans-land of sepreration coud cause a problem in the future . I dont know if your sepreation is registered or just between yourselves (you might still be assumed to be next of kin) Get it sorted . Your little girl is the most important thing in your life (not him) and must have the security of not having any caring responsibilities (however little)

 

[jugglingmum]

I'm not sure if you are divorced or separated but if you are divorced you are not legally next of kin, his siblings are, from a medical view point.

Your daughter will become next of kin on her 18th birthday.

(My brother has two children u18. He isn't married but living with someone so I'm next of kin, not that I want to be)

If you don't build boundaries you will end up being the carer. Given you are no longer in a relationship then you need to step back and make this clear to his siblings.

 

[Charlotte79]

Thank you everyone! Wow it seems pretty clear from your messages that I need to step back. I went and saw his ex (of 14years) and had a great chat with her. We get on really well and she is the sole carer of their 16yo daughter.
She is supportive and actually sent a message to his family and offered to be there when we have a meeting. So that's positive. You guys are already a great help and I think your support will be invaluable in the future.
In regards to our divorce it is definitely in my mind and we need to finalize all the paperwork in September when the official date of the separation has reached 2 years.
It will be difficult to step out as for now he does have our daughter's care at times and I need to make sure that things are ok. I have put in place direct payment for all his bills and sorted out his disability benefit already but I fear if I am not onto things then it gets messy and that's when his really deep depressive/deffensive state kicks in which is very detrimental for our daughter.
That's why I feel stuck between a rock and a hard place. If I don't do anything to smooth things out then he will go downhill and won't be able to see his daughter as much....
I am in the health profession which I think is also why I have a caring defau

 

[Charlotte79]

I am in the health department so I think this is why I have a caring default mode and take responsibility for others... I will need to work on that. It might be why his family is happily sitting back so far as I have probably hidden most of the problem by doing too much.

 

[Charlotte79]

Hello again @Charlotte79

From your posts it`s clear you still seem to feel responsible for helping to sort your ex husbands care with his family.

This is his family’s responsibility, not yours. They should be the ones organising meetings and instigating discussions, not you. They should be the ones graciously asking for your help and being grateful for anything you can offer.

I understand your compassion and good intentions but you are still allowing his family to expect far too much from you.

Please be careful

Once family care has been agreed on and established, you can easily become more fluid to appease your conscience but please start from a solid baseline with his family as primary carers.

Thank you. It definitely is opening my eyes.

 

[canary]

It will be difficult to step out as for now he does have our daughter's care at times and I need to make sure that things are ok. I have put in place direct payment for all his bills and sorted out his disability benefit already but I fear if I am not onto things then it gets messy and that's when his really deep depressive/deffensive state kicks in which is very detrimental for our daughter.
That's why I feel stuck between a rock and a hard place. If I don't do anything to smooth things out then he will go downhill and won't be able to see his daughter as much....
I am in the health profession which I think is also why I have a caring defau

Yes, this is how caring starts. You do just a bit more .... and then another bit as their ability declines..... Then you suddenly realise that you are their carer.

All the while you are plugging the gaps and smoothing things over, everyone will just let you get on with it. The only way that you can force change is to stop doing things.

I understand that you want to try and prop him up for the sake of your daughter, but you can't hold back the tide that is dementia and that time will come, whatever you do. It's probably best to start planning for it now

 

[Melles Belles]

@Charlotte79
Sorry you are this stressful situation. If you haven’t already, please talk to a solicitor about your divorce. Many offer 30 minutes free.
I think that now you don’t need to be separated for 2 years to be divorced so it would be wise to progress this asap.

 

[cymbid]

Please get the divorce started now. And please stop being the organiser of everything. I hear you saying how it is difficult to draw back. That is only so if you allow it to be. Im afraid this may sound a little rude but I think you have a bit of a Martyr situation going on here. Where you think nothing will happen if you do not do it. Please step back. Others will take up the slack . His own family certainly are the first port of call. Your little girl will be fine. As he gets worse she will not be so involved with him and you would be loathe to leave her in his care anyhows. Im sorry if this sounds harsh , but he will not improve and it is not your responsibility

 

[Charlotte79]

Yes, this is how caring starts. You do just a bit more .... and then another bit as their ability declines..... Then you suddenly realise that you are their carer.

All the while you are plugging the gaps and smoothing things over, everyone will just let you get on with it. The only way that you can force change is to stop doing things.

I understand that you want to try and prop him up for the sake of your daughter, but you can't hold back the tide that is dementia and that time will come, whatever you do. It's probably best to start planning for it now

Thank you. Well we are going away for 2 month to visit my parents in France. (We live in new Zealand) So I guess its the perfect time to step back and not get back into it on my return.