Need advice and help on a horrible situation that only gets worse

Hey everyone. So happy I found this site.

I have so many questions, and need to seek out the advice of others.

My very dear friend Val suffered a ruptured AVM in November 2011. She endured 18 hours of surgery, ICU for quite a while, into a rehab then into a nursing home and finally came home a few months ago.

There a few questions I would like answered if somebody out there can help. Her recovery seems very slow. She has lot use of her right arm, and her right leg is not 100%. Her foot turns in and requires a brace to keep it straight in order for her to able to walk. In which she had to use a cane. She will sometimes need the use of her wheelchair when walking has become to much for her. Her speech has also been impaired, and she's slowly (if you can say that) relearning how to speak. I know she has all the information in her head...she just can't verbalize what she wants to say. Her 'go to' phrase is "I Co-So". That is what she says when she tried to speak. Has anyone in the forum, or does anyone within this forum know somebody who has gone through such a long recovery and what was the outcome.

To add to this situation....she is married, however, prior to this happening to her, she had found out he was having an affair. She had gone to see a divorce lawyer, however, she never followed through. Now, he has 100% guardianship over her, and doesn't allow us or his sister (her primary care giver) in to try and help Val. Her sister did go to court to get some guardianship over her, but it's very limited. He has the 'final say' on anything. He is no pro-active in her recovery. He is absent from the house as he has moved in with his 'girlfriend' and leaves her 17 year and 15 year old boy to care for her. Her friends have really gone above and beyond to fill in when we can. I make sure I get her to kids hockey games, her sister takes her to therapy and all Dr. appointments. I'm helping the older one in the process of applying to colleges. We are staying on the boys to make sure they are keeping their grades up etc. We are all doing what the father/husband should be doing. I have talked to Val, and learned how to communicate with her, to an extent. I know she wants this divorce, however because she cannot verbalize or even write her wishes, she is 'stuck' with a deadbeat husband until she can speak for herself. He is unapproachable. His own family has turned their back on him because of this. However, in true narcissistic form, he believes it's everyone else fault and who are we to tell him what he's doing wrong, and how he should handle the boys and Val.

Please...anyone that can please help me.. I'd appreciate it. I feel like her husband is suppressing us and we cannot move forward with Val in her recovery. Furthermore, I believe that this is putting her into a depression. She does not do any therapy on her own. She isn't willing to pick up her tablet and work on speech on her own. To know Val, you would know that isn't her. She was an aerobics instructor prior to this happening. Very goal oriented and to see her like this is heartbreaking. The kids are suffering tremendously also.

I have never felt so helpless in my life.

I know this sounds unbelievable, and I wish it was, but it's not. It's her reality.

336-june2012meandval.jpg (56.2 KB)

You are such wonderful friends to support Val! I had a massive brain bleed on 12/23/07. My bleed was on my left temporal lobe and didn't have the brain damage your friend has, but I totally understand her frustration. The best thing she can do, if possible, is to continue her therapy. As for her depression, if she isn't on meds now, she should be. For me, it really helped me to stay positive! If you read my profile and you think there is anything I can answer for you, please don't hesitate to ask away! Stay Strong and Stay Positive!

Thanks so much Louisa for your comment. Val does continue her therapy weekly. Her sister takes her to all her appointments. The husband is not there for any therapy appt's or Dr. appts. The battle in all of this is in trying to help is her husband. We don't have the authority to take her to a Dr. for depression. Sadly, he has guardianship over her, and he isn't willing and won't put in the time to help her. We don't have the authority to take her to Dr.'s for depression etc. Asking her is of no hope, because she cannot verbalize her needs. If I asked her if she would like to see somebody for depression, her answer would be "I don't know" (some words she's relearned). She was on anti-depressants, but I believe she was taken off of them. I know she needs some help. It's just so sad to feel helpless against this. I really feel like I've hit a brick wall and do not know how to help her other than be there for her, take care of her when needed etc. I truly believe that she will not recover quickly under these circumstances. It's all so frustrating.

I've contemplated getting the state involved, but I'm scared to death that the kids would be removed from the household, but I don't know what else to in order to get her husband to either 1. leave and let us take care of her or 2. step up, be a man and do what needs to be done in order for Val to have the same quality of life that he is living. It's just not fair.

Based on what you have said in these posts, thinking that the husband will 'man up' and do the right thing sounds far fetched.

If he has moved in with his girlfriend, I'd think that would be pretty easy to prove that he's abandoned his kids and his wife. Should make it easier for someone else to appointed her guardian. Of course, that means more work for someone................

It is not a good situation, for anyone..........

Best wishes,
Ron, KS

Hey Ron…one would think anyways. However her sister did go before the judge to gey guardianship over Val, and the judge said “do you really want to go there with this right now”. The lawyers (for the husband & sister) all sat and talked, and she was awarded partial guardianship. The partial only awarded her rights to authorize visitors to see Val when she was still in the hospital and rehab. The husband had it set up that noone was allowed to go in and see her unless we had prior authorization. Not sure we can “prove” that he’s moved in with her. I don’t believe he is on the lease at their apartment. I can say with 100% certainty that he is not at the house on any night.

We aren’t concerned about the work, its just finding the right judge is what it seems. We do have pics of him in Aruba with his girlfriend a few weeks after this happened to Val…the judge did see them and didn’t care. Blows my mind. This is all part of the reason we feel ‘stuck’.

Might be time to speak with an attorney, and include the discussion of a Private Investigator that can document the times/places of the hubby..........

Ron, KS

Is there any way to appeal to the deadbeat husband in ways that he might understand, that might seem horrible to you but may appeal to his narcissistic side? That if he really wants to live a 'normal' life with his girlfriend and go off to exotic places like Aruba and do whatever he wants, that he needs to do the right thing and move on---for the sake of her and him and the kids too? What does he get out of keeping this situation? Is there money involved? This is a terrible situation and I wish there were agencies that one could go to help resolve complicated matters like this. You might need to consult with a lawyer, maybe one who specializes in disability issues. I would think if he is not providing the care needed at night, that that is a SERIOUS welfare problem. Is there an Adult Protective Services in your area?

Try talking with adult protective services. Most jurisdictions are required to follow up on all complaints, and they will keep your name out of it. Worth a call.

I think I just might do that. I think my biggest concern about doing this, how will it effect her kids? Would they ultimately be put into a foster home as they are under 18? The boys, nor Val could handle that. They need each other. What about her sister, would this effect her being the caregiver for Val during the week? She is there Mon-Fri all day taking care of her. It's the nighttime/weekends that the husband is leaving either her boys or her friends to help. I'm generally with her Fri - Sunday. If I wasn't there for her on the weekends, she wouldn't get showers, never got off the couch etc. It's too much for her kids to do day in and day out. Plus they are boys - they don't think about in the context that another woman/adult would.

I'd visit with the boys about it and get their feelings..........

15 & 17 yr old boys should be pretty self sufficient and have schedules of their own to keep. I don't see it as much of a challenge for them if they go to a foster home, especially if it's someone they know and lives close. You wouldn't want to see them changing schools, etc. My guess is each of them would know at least one family with a son in their class they could go live with short term.

At their ages, they should have some input on actions you are planning to take (in my humble opinion).

Hope this helps.
Ron, KS

You are a very good friend indeed. I think Ron offered some of the best advice. The boys are at an age where they should be allowed to have input. I also agree that adult protective services could be of some help. Are Val's parents still living? If so, they may be able to help.

Reovering from an AVM diagnosis, along with your friends rupture, is a very long recovery process yet with friends and family like YOU by her side, I have so much Faith that your friend Val will be back at the end of this long trial :=)! While this will be a life-changing event for her, please keep the Faith that she will re-emerge from this back to the wonderful friend, mom, daughter and sister that she's always been. Please continue to be patient with her and Love her thru this recovery which is so very important to the AVM patient. I say this as I survivied an AVM diagnosis back in Feb, 2011 when I had my rupture and am so very grateful to have had such Love and Support thru this trial of mine - having this so helped me with my recovery!!! And please do not feel "helpless"; you have no idea how much you are doing for your friend just by being there for her - you certainly are one true friend and is exactly what Val needs right now.

Keep the Faith knowing that Val will be back :=)))!
Michele

When does the 17 year old turn 18? At that point he is an adult. And he can take guardianship over his brother. Mom would have nothing to worry about.

He will be turning 18 in May, and then in the fall - will be headed out of state for college. Or so he hopes. He is thinking about doing a year at a local community college. I believe for the reason of being able to stay home with his mom and to be there with his brother. His younger brother isn't ready to take on the roll of 'man of the house'. I do know that they boys do NOT like their father anymore. They don't speak to him when he does show up at the house, which is normally for his 'work'. He is self-employed, so that is the reason for him wanting to keep the house. He has the space at the house and the rental garage across the street to keep all his work trucks and equip. If he were to lose the house, he would lose a place for his equipment. So..again..it's his narcissistic approach to this. What's in it for HIM. I really think you are all correct in stating that I need to talk to the boys and see how they feel and what their wishes are, and how to move forward.