This is both a question and a rant.
I thought I had a good relationship with the Manager of the Care Agency that supports both my BIL & myself.
I'm currently helping to form fill with my BIL and a person from our local council to see if he's entitled to further benefit. I am always very open with BIL about information I am sharing with him if I can be.
Now I have expressed private concerns to Manager of CA that BIL is not eating (he's lost 1 stone in 7 months), changing his clothes, washing, going out and that he has let me know of falls and incontinence issues.
I've also reminded Manager of CA that BIL needs to see GP with regard to further memory tests as there are things missing from medical notes that are vital to future assessment. This I have reminded BIL off.
I spoke to BIL briefly on Mon, but not yesterday as my dog was rehomed and I'm recovering from Norovirus. Checked in as usual today, nothing unusual other that carer had been early.
Then got this from Care Manager:
" Hi Lucy

I met with *** yesterday and discussed his care needs with him, I also shared recent observations.
I was delicate in my delivery I promise.
We talked about information sharing and how much information *** wanted me to share with other parties including yourself.
*** would like additional control over his care. He has requested that information is confidential to him. He has requested that his brother now becomes his NOK.

I spoke openly regarding the concerns for his safety and wellbeing but *** feels that he is in control of his situation. We spoke about social Services and what information to share with them. *** was happy for me to be the lead in his care and sharing relevant information with SS.
We will continue to monitor closely. The team are aware of *** wishes for a more confidential style of service provision.

I know this must be difficult for you as you have been keeping an eye for many years. However I do have to respect his wishes.

Best wishes.

This has come from absolutely nowhere! His brother has zero contact and wants it that way, so being told his now NOK will be fun (oh, to be a fly on that wall :~)
I really don't care whether I'm NOK or not, what I do care about that we are talking about an individual who can absolutely declare that he washes, eats ext, and that he is capable of making all his own decisions.
It took 4+ months to persuade him to get his dentures fixed so he could eat.
His cats are fed/watered but he does not clean their litter tray and so they go wherever in the flat as they try to find clean areas.
He lives on his settee which includes sleeping on average 20/24 hours, he is an alcoholic and has been since age 14, now 64. Smokes grass when he has the money for it.
When I asked him what the email was about, he said "I told you not to crowd me" I reminded him that given my recent illness we've had little contact and was told to pi*s off which I've done.
I firmly believe that the Manager of CA has said something that has led my BIL to believe I've overstepped a boundary, though I've no idea what and conveniently the email was sent 10 mins before office closed for the day!
My BIL is a stubborn man who is never wrong and can't back down.
So I'm worried sick because I am and have been for years the only one looking out for him. He knows this full well, but now he's punishing me for whatever it is he thinks I've done.
I'm also furious with Manager that all this has happened.
I've left a message asking BIL's brother 'A' to call me.
Right now this really is the last thing I need. If I wash my hands of this whole situation then I know BIL will not get the care he needs now or for the future. His end of days wishes will not be met, my other BIL 'A' is not going to put himself out.
After death of Mum 5 years ago, BIL 'A' took care of younger brother, twin to my BIL who had schizophrenia (due to family dynamics my BIL was never checked, hence alcohol issues. He's been self medicating all his life.) in Dec the twin was buried and BIL 'A' made it very clear that apart from sorting out the estate that was his duty done and dusted.
My BIL only got a Birthday card because the funeral was that day!
Barely acknowledged at the funeral and no Christmas wishes.
I wish blood was thicker than water then I wouldn't be so hurt by all this.
Thanks folks for letting me rant.

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Thanks sendme2help for your advice.
I do realise that I can continue to care to care about my BIL without having to be the one to care for him.
I am handing those shoes and the baton to someone else and I'm going to use all the time and energy I previously put into care for my BIL into care for myself instead.
Thank you though for your suggestions on where to seek help.
Helpful Answer (1)

Lucy, Your assessment of Bil and his care needs will become readily apparent to others-and the care manager, if you are not there and he is left on his own. For his sake, and in the long run, it is sometimes better for them to get the care they need ordered by the care manager, and more services/benefits were what you were seeking for him, if I have read correctly?

Now you. You may have been over-extending yourself on his behalf too long, and that has been unhealthy for you. It may be a stretch, but maybe the care manager's actions have something to do with concern for you too. You have your own very real issues. You don't need an alcoholic's abuse towards you because it will make your illness worse, even though you may understand him and have provided excellent care in the past.

If you have trouble dis-engaging from helping this man, try the many support groups around that help give a perspective to those who care too much. Alanon is one group, however, for you a caregiver support group might give you the contact you need to understand that it is time to take care of yourself.

Most sincerely, I hope this rough patch is better soon. Going forward, best wishes and freedom to you!
Helpful Answer (0)

Jinx & Tacy, Thank you.
Already it feels like weeks since this blew up :~) I've talked long and hard to my best friend and realised that literally my whole life I've been a carer. Starting with my baby brother when I was given sole charge at 2.5yrs old.
It's all I've ever known and initially I felt empty and bereft. Now though I know that even if/when this blows over it could never go back to being the same and frankly I don't want it too.
When my SO was alive we made a commitment to each other that if either of us got dementia we would go into residential care. We would not nurse each other, but let others do that and try to keep "our" time special. He died before it was an issue.
Now I've been caring for my BIL in my late sister's place but where the situation reversed he wouldn't be caring for me.
I need care myself yet I've been exhausting myself trying to care for us both.
He's considered to be capable of deciding to cut me out of his life for the moment, so I'm going to let him get on with it. If he decides he needs me then I'll see if I can help him or not.
What I won't do is be at his beck & call, to be verbally abused because he feels like it. Sometimes it's the illness but sometimes it's him! Lets see how others feel getting the short straw.
I know it's not going to be easy staying strong in this, I've had 56.5yrs training for this but it's time to take retirement. No golden handshake, more a slap in the face but time for me before my own dementia robs me of that.
Thanks for your support.
Helpful Answer (3)

Lucy, you have health problems yourself and need to look after yourself first. When things blow over, are you going to be willing to take back those responsibilities? I know that things are out of control at the exes house and I get called several times a day for advice to fix things and because they have learned mommy is difficult...oh reallly lol. I have my life back almost to what it was and I wont give up my freedom again. The first few days, it is a transition because you need to adjust but after that you will relish it.
Helpful Answer (0)

Lucy - I think I can imagine how shocked you were by that email. What thanks for all that you have done.

If you keep your cool, this all may blow over in a week or two. Do enjoy "me" time, because it might disappear again real soon!
Helpful Answer (0)

Thanks Tacy, I know your right. It is desperately hard to do, but my BIL still knows where I am and how to reach me if he wants to. Now I need to concentrate on taking care of me, something that's been on the back burner too long as he was the focus.
I know a little of your struggles from the support I tried to give you, thank you for offering your support to me.
Today for the first time in I can't remember when, other than caring for my my fur babies I've done nothing except what I wanted to do. I've spoken to noone and not done any of the myriad jobs that are waiting ~ a good feeling :~)
Helpful Answer (2)

Lucy, sometimes it is hard, but you need to walk away. My exes mom thinks I am a horrible person, because I would go to her casemanager, doctor and aides to tell them her needs so I was picking on her and she got mad. Since her children took over, she has had septis, been out of rehab a week and has another uti and they havent given her proper medication for a week because they dont know what they are doing. I got a phone call yesterday asking for help, the answer was no...if "family" want responsibility, they need to stop doing things half a-- and realize the importance of doing things correctly. Of course, I was on speaker phone so I offended people. I guess, my point is sometimes you need to walk away. Hopefully, in my case someone will step in, report them and she will get the proper help she needs.
Helpful Answer (2)

Thanks Pamstegma your right that my BIL can nominate who he likes, but actually there is no legal standing in UK re NOK.
I've spoken with my BIL and yes, he's punishing me for something he thinks I said.
Frustrating but true that he wants control because it's slipping away.
Helpful Answer (0)

You are not a blood relative, so you have to simply step back. NOK is the same as Guardian in the US. The patient has a right to nominate the NOK. The Judge would then decide at a competency hearing who the NOK will be.
The patient wants control, that is universal, anywhere. If they feel they have lost control, they reject the person who has it. Sad but true.
Helpful Answer (0)

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