My BIL is caring for his significant other in her 80s who has had a stroke. She is bedridden, in diapers. He says she was discharged from rehab due to her benefits running out. Although he is a military veteran, they're not married but have been together for decades. He is in his 60s. A neighbor has told him he has started to look awful and has lost a lot of weight. She is not allowing anyone into the house and insists he be the only caregiver. He gets away for an hour to get groceries now and then, and also talks to the neighbor while he takes a smoke break outside sometimes. He knows he is in trouble and burned out. I think this has been going on for at least 6 months. How can I get anyone to intervene or offer any service at all? We live more than a thousand miles away and will not be allowed into their house even if we do go visit. Do I contact the Area Agency on Aging out there, and if so, can they really help a person in denial like this? I forgot to mention, they have chosen to not use the internet!! No computers, just basic cell phone and TV service.
She was discharged because she wasn't making progress (that can be applealed--look up Jimmo v Sibelius) but she could have transitioned to being a long term care resident on Medicaid.
Your brother is going to have to say "I can't do this anymore".
You can call Adult Protective Services and report them as vulnerable adults.
He would not get help from the VA even if they were married, he is the Veteran not her. Now if she is a Veteran then she would qualify for help.
If he follows her lead and does not hire help (and the help should be paid for from HER savings not his) then you could report them as "vulnerable" seniors.
To get things started you could contact their local Agency on Aging and see if you can talk to a Social Worker to arrange for them to stop by and do a "well being" check, let them know what you know.
Sad to say though if he refuses help there is not much you can do.
Keep lines of communication open.
Be nonjudgmental when you talk to him or he will shut down.
Be prepared to make decisions when something happens to him.
Does she have children? If so are they involved at all?
My father was the sole care giver for my mother in a similar position. He refused help because she didn't want it. I think everyone who needs care doesn't want help because they believe they don't need it, are embarrassed or in complete denial. My father didn't take care of his own health needs and died. My mother is still alive and now if full-time care.
A person providing care dying before their loved one is a common occurrence. They neglect their own physical and mental health in the desire to keep their LO happy.
You may not be able to provide any help as it he needs to realize that what your LO needs is different than what they want. Until that happens, things won't change.
My folks are living this now.
Is he really going to not let you in if you show up at his door? All you can do is try to talk to him and let him know there are options and allowing her to demand that he isolate himself and not get any assistance with the task of being a full time caregiver is selfish on her part and not mentally and physically healthy for either of them.
Just wondering if she didn't always rule the roost in their relationship.... He needs to step up and make good decisions for both of them. That is the best thing he can do for her. Remind him of that.
I know reporting sounds scary and makes us feel uneasy, but the bottom line is their health and welfare. You can let APS know you wish to not let them know who reported them.
Partners (married or not) may have vowed/committed to *look after their partner*. So their goal becomes "I must do it".
But some hold the false idea that they are the ONLY one who can provide the care.
He can still look after her PLUS add in extra help. This may be home aides, housekeeping, sitting while he takes time out. Or even finding a NH to do the hands-on care while he remains a loving frequent visitor.
By arranging others to help, he is not failing her. He is ADDING help - building a team. She may not understand this. She may resist, get emotional, act out.
She only wants him. This is common & understandable. She trusts HIM. But is it reasonable for him to provide 24/7 care, by himself? No.
If she cannot reason this, she has lost her reasoning ability. This lack of insight is called Anosognosia. An effect seen in many stroke survivors.
He was a VET? Remind him that defence forces are not maintained by ONE soldier. A team approach is necessary.
He will need to be brave enough to LOOK properly at this situation. Then brave enough to ACT for the health & wellbeing of BOTH of them.
If he can change his mind about what the goal is, he will accept help.
Does he know how to navigate the web using internet? If yes:
I am thinking the very best thing you and your husband can do for BIL is to:
- go visit him, staying in a hotel or motel so he doesn’t feel ambushed. Let him come to where you are staying, even if it’s just for the shortest of afternoon visits
- buy and hand him in person the gift which might save his emotional life: a mobile phone with his own private telephone number, and unlimited minutes for talk and internet and text. Unlimited is so important because when he realizes he can find out about help by looking online, he will use his device like a thirsty man at the oasis
- TracFone and other pay-as-you-go phones and plans may work. Pay to get him started, then maybe he can take over the payments when he realizes how valuable the phone and internet are to his own mental health, and to identify where and how to get his ladyfriend help
- I mention getting him the private phone number because it sounds like he is crying out for help subconsciously, since he mentioned that the neighbor said he looks bad and has lost a lot of weight. With a private number he can sometimes phone you and others for supportive help, and the ladyfriend won’t be able to snark at him if she looks at their mutual mobile phone and sees long calls to unknown numbers
If BIL doesn’t know how to navigate the internet, go visit and give him a quick tutorial in person. You can preload on his gifted phone various websites which may be able to provide him guidance in finding caregiving help.
If BIL really truly doesn’t need a private phone to speak freely, you could get him a tablet device which can access Wi-Fi. So very many public places offer free Wi-Fi such as fast fooderies, libraries, etc. so he could get a breather from caregiving by going to those places and accessing their internet. Alternatively maybe where they live provides internet access as part of the rent. My in-laws’ place did so.
I fear the situation will get incrementally worse, and something’s gotta give. If your BIL has access to the internet, and a way to speak privately to those who can help, his — and her — life will be more bearable.
Bless you for being concerned and trying to help those who are too close to the forest to see the trees.
Time to contact an Elder Law Attorney on a joint Zoom meeting with BIL and then take action or he may become the next stroke victim.
Do you have a relationship in the past with your BIL and his wife? It appears not, if you will not be allowed in their home. It happens. The kind of help you are offering is for one person in the relationship, and may require that you divide and separate them in order to help (rescue him?), and not her. Do not do that. He could have left at any time during their relationship. The 'patient' is ill, does not need punishment or to be separated from the one she trusts.
If one is very ill, and one is burned out, maybe calling for an assessment by APS could help find resources for them both.
A neighbor was "helped" by his family, he went to live with the daughter. The wife was sent by her son to live alone. She was diabetic and died within a month without her husband or proper help. The husband had called her, and sent someone to check on her, finding her dead.
Don't take sides. Don't divide the couple. Help them both. A good way is to have an honest relationship with your Bil's significant other. Better to work with a family member or friend of the SO before accusations of abuse are leveled by only one person.
There will be a solution, and I believe your heart is in the right place, wanting to help. Their age difference is even greater when one is in the very older generation, and your Bil is in a completely different generation. Unless he is ill or disabled, he can make decisions on his own?
I agree with other caregivers who suggest APS.