My ex husband and I have been divorced since 2010. I have full custody of our daughter so the only real contact I needed to have with him was once or twice a year when my daughter would travel to visit him.
A year ago I asked if he could have her for 10 days while I went on a retreat. We planned for months in advance, everything was all set. When I returned I found that everything had fallen apart, it had been a serious debacle, my daughter was traumatized as my ex had been frantic from day 3 saying I had abandoned them. He had gone to the school and they wanted to meet with me about my daughter but also about my ex and his strange behavior.
When I got home and began to peel back the layers - talking with him, my daughter and meeting with the school, it seemed that my ex had some memory problems and had some cognitive decline over the past years that I had not had enough contact with him to notice. I asked him if he had had any problems with his memory and he said he had seen his doctor about that and it was caused by stress and poor diet. So I knew that it was on the radar.
He went back home to his long-term girlfriend and his mother, (who has dementia) and who he takes care of.
About 6 months ago I learned that his girlfriend had broken up with him abruptly and coldly. He was getting in touch with us more often and wanting to see our daughter. The more contact we had I could tell his memory and cognitive state were in dire shape. He was repeating things over and over again, forgetting things that had happened the day before, and he was “remembering” things that never happened.
With his girlfriend gone and his mother herself so ill, I knew he was alone. He has an estranged brother who lives several hours away and I contacted him, but he did not seem eager to do much, so I felt like I needed to step up and help.
My ex has not worked in 8+ years and had no medical insurance. I applied for Medi-Cal for him, which took 6 weeks but was approved. I was back and forth to his town to attend court hearings with him for a car accident he had, went to appointments with him, went to the DMV to renew his expired registration. (He cannot fill out forms). I was on the phone with him for 30 minutes just trying to walk him through filling out a check.
We got him in to meet his new primary care physician, The PCP referred him for an MRI which happened about two weeks later.
Two weeks after that I had not heard back regarding the results so I called the doctors office. They apologized and within three days they had us back in to meet with the primary care physician. (This was this past Monday). The doctor stated that the MRI showed atrophy in the temporoparietal lobe. I asked him what that meant and he said “I don’t know.” He said he would get the referral for the neurologist ASAP.
Two days later I got a call from the neurologist office asking if we could come in that afternoon. This was Wednesday, two days ago. I scrambled to get back down to my ex’s town by 2:45pm.
The neurologist did some cognitive tests, asked my ex to draw a clock, asked what day of the week, what month, the president, all of which confused my ex. The neurologist reviewed the MRI with us and showed us where the atrophy was apparent. He said with everything that he had seen he felt that Alan my ex has dementia of the Alzheimer type.
He said that it would be best to let my ex’s brother know that he won’t be able to care for their mother for very much longer, and for him to prepare for his license to be taken away. What happened next was very surprising and disconcerting. My ex became angry and insisted he’s fine, he’s a scientist and there’s nothing wrong with his brain, he said no one was going to take his license, etc.
When we left he told me he was going to get a lawyer and we had trapped him, etc.
I thought I was doing the right thing. Should’ve minded my own business. :(
I think the proper thing to do here is to notify the family (estranged brother). If he doesn't want any responsibility, please tell him that he needs to notify his mother's doctor and possibly adult protective services that his mother is going to be without a caregiver.
Give him time to process all this. Continue to be there for him. Your child will be watching how you care for her father. She will be losing her father as well - he will continue to exist, but he will be changing in a very sad way for her. It can happen quickly or it can happen very slowly. As she sees him in despair, I think it is important for her to know that you would lend a hand when you can.
You did do the right thing. Continue to do so. You don't have to be 24/7 involved, but he/your daughter need to know you would do what you can.
This sounds like early onset given his mother is still alive? And of course he will need decades of care now. I am surprised that all the doctors discussed things so thoroughly with you; did he give his permission for that? I just am hoping you have not assumed POA and would caution you against that. You have all of the information now. I would share it with the brother and step away. You are divorced from this man; if you didn't much care to be with him when he was WELL, this now will be a decades long, crucible.
I am so sorry. I would share this information with your daughter, his child, and I would caution her against trying to give care. As I said, if he is say 70 years old, this could go on another several decades.
It doesn't really matter that you intervened, and in the long run will matter even less. He has likely known something is wrong. I would step away and tell him when he calls (I believe he almost certainly will) that there is really nothing you can do to help him. Refer him to his brother; suggest a fiduciary to handle his financial affairs.
What I guess I am saying is, protect yourself. Unless you wish to sacrifice your life to what is coming.
You have shown compassion to your ex in assisting him in this crises. Moving forward, it will be about finding the right place for you to be. Not becoming full-time time caregiver to your ex, or his Mother. Not walking away completely? Maybe as an advocate?
You have been the important stepping stone to get a professional diagnosis happening. Maybe this is enough.
The Doctor is now aware of the dangers (driving, the needs for his Mother). I would ensure this is formally noted by writing this to his Doctor & any Specialists. Let them take the necessary steps to involve Social Workers.
Your daughter will be losing the father she knew. This will be your new focus.
All the very best for this hard situation.
Perhaps the best you can do is to write out the situation for the brother, with suggestions that brother could follow up – for example how to find a care manager, get the paperwork in order etc. Make it clear that you will not be taking further responsibility, and because of the driving risks you may need to put the brakes on access visits with your daughter. Paperwork is not to be in your favor – no POA, executorship, trustee, lease guarantee – not your business. Keep a copy of the letter. You may find it hard emotionally to step away, and to explain why to your daughter, but it may be more straightforward than mixed responsibility where you aren’t in a position to win. In fact you lose whenever ex disagrees.
I truly appreciate your wise insights. You are right, and I know that I need to step away. His brother is well aware of all that is happening and in my heart I know that I have gone above and beyond. Now that he has been diagnosed and a light has been shown on the situation, it’s time to step away and let someone else take it from here. I will make sure that his daughter can spend time with him as much as is appropriate, I know that is truly where my responsibility lies. Thanks again. All the best.
I think you have done all you should do at this point. Its up to his doctor to contacted DMV to have his licence revoked. There is a brother and whether he likes it or not, he needs to get involved with Mom. He doesn't have to physically care for her but he needs to find her a safe place. Same with your Ex. If brother doesn't want to be involved he needs to find someone who can oversee his brother.
But as an ex I would not get myself further involved. Sounds like your daughter has never really had a relationship with him. Sad that she now probably won't at all. You can be someone he calls and talks to, but I think that should be as far as your involvement goes. You have a daughter with a health problem of her own and you probably have a job. For me personally, that's enough. I know what is involved with epilepsy. My 27yr old grandson has suffered from Grand Mals for 7 years. Maybe absent seizures before then. Meds were keeping the seizures less frequent but he still had them. He had surgery in Sept to remove the damaged section. So far so good. Will start weaning off the meds.
I understand the willingness to help. But he is an ex for a reason. Concentrate on your daughter's needs.
You did the right thing and now it is time for you to step back.
Your ex is in his early 60s, and he has reacted badly but understandably to a terrifying diagnosis.
Take a step back and let everything settle down. If you'd like advice about supporting someone with early onset Alzheimer's Disease, go to www.alz.org - lots of useful information that you can pass on to your ex in due course.
Did you get in touch with your former BIL?