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Hello. Husband has several "brain" issues

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Old 11-17-2015, 09:14 AM   #1
Kendyll
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Default Hello. Husband has several "brain" issues

Hello, everybody!
I'm here to find information and support to help my husband and our family.
He has several "brain" issues. He has suffered from as many as eight concussions (he doesn't quite remember) over the course of his life, beginning when he was very young. He's been diagnosed with some type of ideopathic seizure disorder and "pre-parkinson's" (which I've never heard of). There's also semi-diagnosed PTSD with indications of some level of dissociative identity disorder.

They have him taking Lamictal, which does seem to help a LOT. That's as far as I've been able to encourage him to get with any kind of therapy or treatment. I can't FORCE him to do any more, so for the most part, I am very grateful for the good days and try not to fear the bad ones.

Because there are still bad days, and when they get bad, they get really bad. Mood swings from rage to despair to rage to sobbing inconsolably. Memory lapses/blackouts. Seizure activity and panic attacks. He's never physically violent, but can get verbally abusive sometimes.

He doesn't understand that, as traumatic as these episodes are for him, they are just as traumatic for the rest of us. He had a really bad night last Friday, and on Saturday, our youngest son tried to run away because he was so freaked out. I try to keep things as normal for the kids as I can, but there's nothing normal about a grown man yelling and wailing and shaking for hours and...i love him very much, but it's very hard on us all.

He's spoken to his doctor, and they don't seem to be taking this all that seriously. He has months where he's fine, and then a scattering of a few days that are bad, and they seem to think that's actually pretty normal. We try to make sure that he gets enough sleep and eats regularly and takes care of all that basic self-care, but some days he doesn't and that's when things get rough. I have to work, and I honestly can't afford to be there all the time to help out.

And again, MOST of the time he's fine and everything's cool.

IS this normal? What more can I do to help? He's already starting to minimize how bad Friday was...And if I can't do much more to help him, what can I do to help the rest of us?
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DejaVu (11-17-2015)
Old 11-17-2015, 02:41 PM   #2
DejaVu
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Hi Kendyll,

Welcome to NeuroTalk.

This sounds quite challenging for everyone. I am very sorry for all you, your family and your dad go through.

I am wondering if the "dissociative" diagnosis is "dissociation" or "dissociative identity disorder," as you had written. I don't mean to challenge you on this. I am simply wondering, as there is often a lot of confusion around these diagnoses.

If your dad has a "dissociative identity disorder," this would have been present very early in his life and throughout his life.

If he simply "dissociates," that is a bit different.

People living with "dissociative identity disorder" or with "dissociative tendencies," can have a good life if they learn to manage these conditions.
Has your dad had help in learning to manage his condition?

Either can present a challenge, of course. Adding in the additional diagnoses you have mentioned can make this a tremendous challenge, a challenge likely too big for a family with young children and with so many demands upon them already.

Any chance of sharing your dad's care with someone, maybe someone from the VNA?

Any chance of finding a "respite" where he can go and receive intensive oversight and assistance when he is having more severe episodes?

Might it be helpful to you, to your family, and to your dad, if you could find a place for him to have assistance in a totally different setting, part-time or full-time?
Either "day care" or placement in a "care home" type of a setting?

I feel your concern for your dad, for your husband, for your family.

Everyone is important, so the best way to deal with this is in a way which attends to everyone's needs, as much as possible.

Sometimes, we feel our parents/grandparents are better off in our own homes. Sometimes, this is true, yet not always. Sometimes, they feel less stress and a greater sense of independence and fulfillment in settings where their needs are met, without feeling guilty, without feeling like they are a burden. I can imagine your dad has some unique needs which may be best met by people specializing in his needs?

When we take in family for prolonged periods of time, we do it because we love them and want to help in any way we can help. However, sometimes, it gets to be too much and we end up drained and then unable to help in the most productive manner.

I wonder if you and your husband might meet with a therapist or social worker, in order to discuss the many issues which come up for families in these situations? I think I would start with my spouse and a professional. I would hope to find a mutually acceptable option for my parent. I would hope to add my parent to the discussions, or get a referral. I would also hope to bring my children into the discussion.

If your dad has his care at a medical center, it's possible there are medical social workers available to assist with his case/his needs, able to help to define his options with you and with your dad.

I'd suggest picking up the phone, explaining your concerns, finding out which resources are available. I am often so amazed with the many resources available once I ask and make a need known.

You do have your hands full. You are doing the very best for everyone by reaching out and asking for help.

Love and Prayers,
DejaVu
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Old 11-18-2015, 11:11 AM   #3
Kendyll
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Unhappy That's not quite it

Unfortunately, this is not my aging father (who passed away a couple of years ago).
This is my husband I'm talking about.

As far as the Dissociative Identity goes, I really am not qualified to clinically diagnose it. I do know that, for years, I speak to differentiated ego states, with different names and personalities. Over time, they've all agreed to work as a team, and they come out individually less and less. At this point, I only "see" anyone in times of crisis, and they've all understood for years now that I'm here to help and I'm on their side. It's much better than it used to be (but it's still there). I know there was abuse and dysfunction all over his family growing up, and I know that he carries mental and physical scars from that.

Many, many days, my husband is a fully functional, capable adult. He has been able to hold a job, and when he hasn't been employed, he takes very good care of the house and our family.

That's what makes the bad days so very difficult. They happen most often when he is over-tired, or when he doesn't eat enough, or when he allows himself to worry about things he can't control. Physical or mental stress just seems to overload his circuitry, and he can't function. When I can be with him (weekends) I can help to make sure he stays on track, and keep him grounded, but when I'm at work, I can't help with anything until I get home (by which time it's usually too late to head anything off)

I don't think an assisted-care facility is the right answer, considering his normal level of functioning. We are starting to talk about a crisis plan - what to do when he does have the next breakdown. I'm not against temporary hospitalization, but it does leave a bad taste in my mouth. But when it comes to his children, is it better for them to see their Dad having a breakdown, or getting carted off in a straightjacket?

This would still be easier if he would take this all seriously and follow through on getting help. He's not really able to understand...just because he's better right now doesn't mean that it can't get bad again. Kind of akin to the people who quit taking their psych meds because they feel better...He doesn't understand that he needs treatment during the good times to prevent the bad times. I can encourage, but I can't push or nag. That gets me nowhere, and it gets me on his bad side. I see us as a team. He can't always grasp that idea.
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Old 11-18-2015, 07:37 PM   #4
DejaVu
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Hi Kendyll,

My apologies. I had misunderstood, somehow.

Yes, it sounds like your husband experiences "dissociative identity disorder."
It's quite an accomplishment to have this degree of cooperation with different ego states. Congratulations to you on conducting yourself in a manner where there is such a high degree of trust.

Yes, you are a team.

If your husband goes into crisis on a regular basis, I'd suggest he utilize a daily self-care plan. Since his crises seem to happen when he is not taking the best care of himself, it's wise for him to be sure he is taking good care everyday. There are self-care daily sheets, which list tasks which must be achieved daily. Some people use these sheets, check off the tasks, and additionally note mood changes, stress levels, hours of sleep and other information, which tips themselves, and loved ones, off when at the very beginning of showing behaviors which precede crises. There are also lots of different types of mood charts available online, which can be modified to gather the daily information you both may find helpful for intervening early.

It's critical to identify any/all "triggers."

These types of self-management skills are often taught in CBT programs, as well. Many of these programs are taught intensively as outpatient day programs (over 3-4 weeks).

Does your husband work with a therapist and/or psychiatrist?
If his PTSD is set off often, it may be helpful to have this more fully evaluated, obtaining an opinion on treatment methods which may be helpful. There is a lot of news in the area of PTSD treatment. Much has changed, or is changing.
Peter Levine, Bessel van der Kolk, Pat Ogden are just a few on the cutting edge and I think each have written fairly new books, outlining the latest theories for effective treatments in PTSD. These approaches are mind-body types of approaches and have shown great promise in many different populations with PTSD.

A psychiatrist may be able to suggest a medication which may prove helpful, especially if/when your husband is feeling overwhelmed and/or triggered by stress. Sometimes, a short-term medication may help him to remain compensated, or recompensate more quickly.

You might also contact your local NAMI group to see what they have to offer for additional options.

Again, my sincere apologies for the mistake. I must have been very tired when I was trying to respond.

I hope this helps. Please continue to ask questions, as there are many members here with differing experiences and opinions.

Warmly,
DejaVu
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Kendyll (11-19-2015)
Old 11-19-2015, 01:49 PM   #5
DejaVu
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Hi Kendyll,

I did a quick search simply using the terms "daily self-care list" and came up with pages of lists and charts for daily activities, including yet not limited to daily stress levels, daily exercise, daily eating patterns, daily goal-setting -- both fun and chores/tasks, nightly sleep patterns, etc.

Many of these types of charts can be modified to track anything we find helpful.

A part of the purpose of the use of these types of tools is to help to keep focus and to stay grounded, re-directing attention and completing tasks which also creates some distraction from the emotions/stressors which may contribute to a crisis.

Just an example, one site of many:
http://www.depressiontoolkit.org/toolsandchecklists

Don't let the name throw you off, there are many tools/checklists which can be helpful with more than depression.

As for PTSD, when it's triggered, it can definitely set off fragmentation and chaotic switching between ego states. It's best to catch this and try to defuse this as early as possible.

It's always wise to have crisis plans in place.
Some areas have crisis centers, with respite "homes" or centers, where people can go and stay while in crisis, until things settle down and are stabilized. These types of programs are staffed 24/7 by people trained in crisis management. Often, family can visit and join in the activities of the center, as long as this is helpful to the person in crisis.

I do understand why hospitalization may not be your first choice.
I know, in my region, it is rare the hospital units have a bed for any crisis. A totally different organization has crisis beds and "respite" beds (which are meant to stabilize the person in crisis, as well as to give the family/caretaker a "respite" in the meantime).

More and more programs also have some form of "peer coaching" available. There are various types of programs set up with peer coaching. Some are over the phone, some visit the home and/or do social activities together, etc. The goal is to assist the person in identifying triggers and learning ways to remain grounded, without repeatedly going into crisis.

I truly admire your dedication to trying to find helpful approaches. I can sense your love for, dedication to, your husband and the welfare of everyone in your family. I hope you can find truly helpful information/assistance in your community.

Again, my humblest apologies for my initial error.

Warmly,
DejaVu
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Old 11-20-2015, 12:52 PM   #6
Kendyll
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Default Thank you!

I've downloaded the Crisis Booklet from NAMI, and we've talked a bit more about what to do BEFORE things get to that state.

Unfortunately, We may be looking at another one...Fortunately, the kids are back with their mom right now.

He's been trying to find a job, and what he's after requires a fair amount of red-tape hoops. He's been stressing almost every day about "why hasn't" this come through and "why haven't they called yet?" Now today he found out there are a couple of problems with his background check - one with the state courts, and one with the FBI. The state probably has to do with child support (he still owes money from being unemployed). The FBI we have NO CLUE - although I suspect it has to do with the one year he did in college teaching English over in Sichuan). He's flipping out...

I'm trying to remind him of the coping skills and the self-care stuff, and he doesn't want to hear it right now. He's even told me that it feels like he's flashing back to 2010 (a certain event) all over again! but he then tells me that he's fine and I need to stop trying to "shrink" him because he's right and I just don't understand.

It's as if when he gets stressed out, his brain just starts cross-firing and all logic goes out the window. *sigh*

Thank you for the suggestions. I'll look into them, and talk them over with him when he's doing better.

How do you all keep from getting dragged down the rabbit hole?
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