i'm confused, bobby. your identified patient's tests came back normal, but yours did not?

congrats on catching a proper glimpse of "good jen" at the wedding and on the beach.

Ah, I wondered how it was going. I do not do the facebook group, however, it does sound interesting.

How the MRI works showed you that what it did says a lot to help move through all of the challenges you face, no matter what the result is. I suspect that your fear is that the same behavior will pop back up if the results are negative in any way, shape, or form.

However, I think change has happened, The fact that you were able to attend a wedding is awesome! The fact that she spent time with family on a family vacation at the beach is awesome. Those are significant changes.

Her fear of learning of something wrong was underneath the behavior as one possibility. If she is getting mildly better, hurrah. Your son has it right, though, to do the tests follow-up. Then, information will be current based upon what was previously presented.

Here's to success!

So this is a lot of good news it sounds like?

And the family vacation and wedding went well, so that is a blessing. You said she is getting mildly better. Is she willing to take the medications prescribed or is the sister still holding sway to stop those?

I am with your son in the wisdom of going ahead and getting the neurological work-up. Which you guys already did have, correct or do I misunderstand?

I still hear fear in your words, not wanting the wife and her sister to be focused on something bad if it shows up. But this is putting your head in the sand and ignoring what potentially needs taking care of. Your son is right in my point of view from watching my parents and my husband put their head in the sand until the seriousness overwhelms them. Waiting until the cancer was so big, it was terminal. Waiting and ignoring things often means the problem grows.

I want to say that I hear a difference in your words on here. I hear you saying seemingly happy for 30 years which recognizes the negatives of how she was coping with alcohol in earlier life. You didn't know, you couldn't know & I hear more understanding and acceptance perhaps.

And so how are you doing at this time? Still stressed out or is that getting better for you? Did you enjoy the family vacation and the wedding also?

Might be good to get the follow up test, if it’s recommended. Then she and you have even more knowledge once you get the results.

Arfie, part of the standard neuro test is memory and specifically the ability to store words. So they might say, here's 4 words onion, parameter, otter and April, now tell me what day today is, how are you feeling, .... and then 45 minutes later, ask what were the 4 words we mentioned. Yep it seems my wife did better than me on that test.

Hasty, The wedding was very nice. It's mostly good, but it can feel like an illusion when she comes back to older habits. I am pushing to furnish and decorate the house and its kind of a strange role. We got some plants and my wife seemed happy about that.

It was related that my older son said if you get the house fixed up family members will want to come over. I basically said fu. You don't necessarily need your family's help when things are going well, but when you have challenges. He's doing well which is nice but had marital issues a few years ago and if he ended up in a small 1 bedroom apt we'd still visit him, and my wife was supportive with our children and friends through different issues.

I have missed my group here and appreciate kind words and insight you all provided.

You are right about that comment from son. It is kind of arrogant or maybe he is what is called "insensitive". Clueless about other people's feelings.

We have found that some family members and friends are not comfortable being around illness or disability (using a general term). My husband and I both have disabilities, and we've seen many many people become distant or do ableism, meaning putting down the person who is different than "normal". We have been ostracized and even estranged by family but of course they will not admit this is their own ableism thinking. If this is the same son you've talked about before, he may feel shame that his mom is not "normal" and wants it fixed. Not everything in life is fixable. He may see her "disability" as a negative reflection on himself. Instead of being able to have compassion and empathy for what you and she are going through.

Bobby, I am also thinking it is good that you recognize her acting "normal or old self" is the illusion and her current chaos minded or dysfunctional thinking or behaviors are the actual norm, the new norm. When we can see our reality as our reality and accept it, then we are happier inside. I wrote this down from MLRO on another thread "adapt and accept" and I made myself a sticky note with those two words. Sometimes we all need to adapt and accept and I need this reminder.

Furnishing a house can be a lot of fun. This is your opportunity to do some things that give you joy. Have you ever thought that our home furnishings can give us joy? I never did until we studied joy in a support group I attend. Colors, fabrics, paint, texture. My house is mostly furnished around our disabilities and finding joy is my new goal. I need new rugs at the doors and I was trying to decide which ones give me the most joy. None of them really gave me joy so I decided to wait and keep looking. LOL!

Thanks for your advice. Current issues.

1. She's in bed maybe 12 hours per day. Part of this seems to be physical. She may have a strain or muscle bruise and complains of pain. Her level of exercise is dramatically less which is not a good sign as you get older.

2. She is in the house more, but felt comfortable going out for dinner, etc on vacation. Returning she has gravitated back to her to agarophobia. Her sister wanted to stop by the house but my wife refused.

3. Counselor She seems reasonably compliant on medicine, occasionally will say they do no good but overall seems to take them. We have a meeting with her psychiatrist, I may participate since she tends to soft-pedal and minimize issues on her own.

She does not seem to mind me being present but more than 1/2 of counseling is alone. I'd like her to do what my son and I do, create a list of items to cover before, carefully note things to do during session, and arrange for followup later. She goes to therapy but doesn't seem to regard following their instructions as the part to getting better.

4. Neurologist We scheduled two EEG appts but my wife cancelled both at the last minute.

Thanks for your advice. Current issues.

1. She's in bed maybe 12 hours per day. Part of this seems to be physical. She may have a strain or muscle bruise and complains of pain. Her level of exercise is dramatically less which is not a good sign as you get older.

2. She is in the house more, but felt comfortable going out for dinner, etc on vacation. Returning she has gravitated back to her to agarophobia. Her sister wanted to stop by the house but my wife refused.

3. Counselor She seems reasonably compliant on medicine, occasionally will say they do no good but overall seems to take them. We have a meeting with her psychiatrist, I may participate since she tends to soft-pedal and minimize issues on her own.

She does not seem to mind me being present but more than 1/2 of counseling is alone. I'd like her to do what my son and I do, create a list of items to cover before, carefully note things to do during session, and arrange for followup later. She goes to therapy but doesn't seem to regard following their instructions as the part to getting better.

4. Neurologist We scheduled two EEG appts but my wife cancelled both at the last minute.

1. Bobby, this is very difficult for you. I do understand. I have a friend with pretty awful RA that is in bed 12 hours sometimes. I personally think this is a long "sleep" time but honestly, I lay down again some in the daytime myself. I do not sleep well due to my chronic pain and I am a morning person so I get up, get dressed, eat breakfast and start my day, do things - after 8 hours "asleep". My body refuses to lay in bed. But I do lay down and read or maybe nap after lunch. Yesterday, I lay down on a heating pad while doing laundry, which is up and down every half hour. I try to be back up around 4 pm, and then I do get tired and watch TV after dinner. Not 12 hours in bed at one time, but I hate to admit I lay down a lot to reduce pain so it is close to what your wife or my friend might be doing hours wise (I am not usually asleep in bed afternoons or evenings). I also do things as I can, sweeping, laundry, watering outside plants, etc. My relative with a diagnosed mood disorder often sleeps 12 hours. I just can't.

2. There must be something that she enjoys about going on vacation so she is agreeable and willing. Perhaps it is being with her grown kids and grandkids? Being at home with just you is perhaps the let down and the lack of human to human connection again so she goes back into her more depressed shell? Perhaps, just something to think about. I have several elderly friends who come to life around their grown kids and grandkids but when alone in their houses are slightly depressed or low mood.

3. Counselor: No progress but maybe having this human to human connection comforts her. Or she might be getting more out of it than is recognized. You could ask the wife if she feels going to the counselor is good or is she ready to quit. Some people need permission to quit therapy when it is time. You might try asking her what she gets out of it but in a soft, gentle way by saying you are considering your own therapy and whether it is time for yourself to change directions. Not saying it like a dictator or mean dad.

You'd like her to do what your son and you do but she is not you and is not going to do that. I venture to say most people do not come to therapy with a list. That is a control thing you do, control the therapy. I would guess that all therapists have few clients that are real go getters and only need short term help. I would guess that most therapists have reluctant or can't accomplish goals type of clients. Additionally, not all therapists are skilled in whatever your wife needs and so this therapy might be almost useless. Like any profession, there are excellent ones and low skilled ones. Just a suggestion, who knows?

4. I don't know what to say. My reaction is "of course she did". And I know this is so disappointing. Sometimes I wonder if she sees you as trying to control her so she rebels. And the more she rebels, the more control you try to exert because who wants to live in chaos and a wife doing the things you mentioned in the past.

Keep working on acceptance. Talk to your therapist about her/him teaching you skills for this coping skill. Watch you tube videos on acceptance, read online articles and books. Acceptance is often hard for those of us that crave control. But it can truly help us cope and keep moving forward one day at a time. Help us to let go of all the things we have no control over.

What if you start to take small breaks from the wife? I know you are going to not do this but I am going to suggest it anyway. So you are not so engaged and enmeshed 24/7. A day trip alone, a weekend trip alone. If she needs constant supervision, then this tells you something important. I think YOU need support as a caregiver.