Hi, I am hoping this will be a good place to vent, make new friends, understand how I can be more supportive, and more. My husband had an aneurysm 5 years ago. He had a slow leak which caused a massive headache...thought he a had the flu and waited two days till we went to er which resulted in emergency surgery to put in a coil. While scanning they also found two others that had not ruptured as of yet, so when he was stronger from first procedure (about 3 months later) we elected to go back in surgically to have the other two clipped. During this time he had a mini stroke. He is walking talking and doing ok now, but has a huge lack of motivation and sometimes has concentration issues. I do think he could do a better job at with his health, but who am I...only his wife. Somedays I'm good..knowing my purpose as a wife to serve to the best of my ability..to encourage. I feel though as most days I fall short...He feels I am a nag...someone has to keep order, right? Somedays can be very depressing.
Michelle...
Over much time, whether spouses/partners/family/friends...go thru much the same...a number of our members have talked of the "new me" to many variants of issues.
Was he able to return to work / other activities?
Was he referred to a neurologist?
Was he given neuropsychological testing? Any recommended therapies?
Was his vision and hearing tested? Referred to a neuro-oph and/or neurotologist?
For some time, I have been promoting review/study of the "limbic system" aka "emotion brain"
I think there is a "spouse" group which would be helpful to you.
He doesn't see a neurologist on a regular basis, he is now on disability and I helped him get into an old job of what he has the most knowledge...(a produce clerk at a local food chain). He complains about it all the time! Much like he complained about working the 60 hours he used to work at his job before this happened. Difference is he only works 15-20 hours a week now. You would think he was working full time how tired he is all the time. He has seen a psychologist and a psychiatrist. Psychologist said he can come back if he wants, but doesn't see a need. Psychologist has him on prozac, and on yearly visits. In addition he has taken neuropsychological tests. Some deficits, I just think with proper therapists and follow through he could feel much better each day.
Michele, welcome to the group, although I know it is not a group any of us wanted the reason for joining.
I am not a fan of Prozac and I realize that drugs work differently on different people. A doctor put me on Prozac and within a month I stopped because I didn't have any feelings - not good, not bad, and I also didn't have any interest in anything. My daughter had the same side effect several years later. My neighbor takes it and he is the same way - his wife cannot get him to change meds. He stays on the couch 24/7. I am sure that there are others here who really like the drug, but I don't for myself and wanted to mention that different anti-depressants do work differently.
Fatigue is a common complaint with survivors, myself included (and neither of mine ruptured). Of course, depression also causes fatigue - do you think his depression is controlled well?). Did he go through occupational therapy? Does he see a therapist? When I went through neuro-psych tests (just in the last few months), one of the things that my neuro psychologist recommended is that "I have counseling psychotherapy services in order to address the fluctuations and changes in my neurocognitive status that are currently affecting my cognitive and psychological resources" (taken nearly word for word from his report). Seeing a therapist will also be able to assess if any of his medication is working or if it needs to be changed - annual visits will not tell the psych much and I don't think the approach he/she is taking is working.
I agree with you that with better follow through and therapy he should do much better. The fact that he is able to work, at least some, is good news, but then there must be some frustration in that he cannot do the work he used to do. I do know that even with my NOS (Neurocognitive Disorder), I get very frustrated myself.
I would suggest your husband see another psychologist as a 2nd opinion. Sometimes it takes a few tries before you can find the "perfect" doctor. Good luck and let us know how things are.
Take care, Sherri
thank you, I may try to suggest another option. We are in the process of finding him a new family doctor as well since he was not crazy about his last one, so maybe I will go with him and ask if they can offer some suggestions to a good place to go. His Neurologist referred us to Pine Rest and I thought they were a well known place that could be of great assistance, but my gut is telling me not so....I just hope I can say the right thing to have him agree to check into another place. Maybe I will make mention what you have told me about the Prozac
Michelle...sorry for my delay... mentally pre-occupied...thank you for sharing what yoru hubby has had...and, does do...
After 12 years...I yet have fatigue days...and, I am so slow in accomplishing anything...you'd like faint or suffer N/V if you walked into my decade of accumulated squalor..'cuz I can't vacuum/.clean til the squalor is reduced...and, I am yet soo slow in reading/comprehension..to file, recycle, shred...Yes, friends have offered to help..but I "visualized" imagining them running thru things so fast it would cause more confusion...and, if they tossed something at me asking if I wanted it...my eyes would cross almost as far as my thoughts/judgment ...everything for me, is a slow slow step...
Skipping all that...have you gone w/him as his advocate...to ask the docs what/why...and how come and what alternatives? I can share a chapter or two on this...
Wishing you the best in each of your steps...and pray that some lord of neuros will step forward on establishing/promoting appropriate "recovery programs" based on the areas of the brain damaged.
The variances in our brain may also occur after f/u angios/additions... So it is not a one-stop shop...
Michelle said:
He doesn't see a neurologist on a regular basis, he is now on disability and I helped him get into an old job of what he has the most knowledge...(a produce clerk at a local food chain). He complains about it all the time! Much like he complained about working the 60 hours he used to work at his job before this happened. Difference is he only works 15-20 hours a week now. You would think he was working full time how tired he is all the time. He has seen a psychologist and a psychiatrist. Psychologist said he can come back if he wants, but doesn't see a need. Psychologist has him on prozac, and on yearly visits. In addition he has taken neuropsychological tests. Some deficits, I just think with proper therapists and follow through he could feel much better each day.
My husband had a AVM. Arterial Venus Malformation which hemmorhaged . He was 58. He lost his whole left side. Its been seven years and just now he is showing some progress. He went back to work but then retired from Verizon after 41 years Meanwhile they found a enlarged tumor on his left kidney. Two years later it spread. Chemo and he is clear. But who knows. We take one day at a time, I pray a lot, Life gets miserable. We thank God for all the little blessings in our life and for providing for us. Cherish any good thing in your life. I was just thankful he could get to the bathroom. In the beginning I had to wash and dress him. Help him up and down stairs. Husband did have blood clots in is legs but that was from them not moving him enough. He is off Warfarin, I give him a baby aspirin everyday. He has no neurologist right now. The Pcp says she might take him off blood pressure medicine. 110 over 70.No diabetes. no cholesterol problems. he is in better health than me. but i am so worn out from taking care of him, and the whole house. Maybe your husband needs a anti depressant. He is much luckier than my husband. My husband wanted to work but some people in the Company weren't too helpful at work with his disabilities.
Hi Michelle,
Hugs to you as you continue on this journey. I'll share my story with you in hopes that it can shed some light on your situation; I'm sure they are not exactly the same, so take what you can from my experience and I hope it helps you and your husband.
I grew up with a Dad with symptoms similar to what you describe as your husband. I was a year old when he had his rupture, and he had clipping surgery and had a major stroke. He came home in a wheelchair, worked his way up to a cane, and eventually gained the ability to drive again. He remained on SS Disability. He napped EVERY day. As a little girl, I didn't care or know any different; that was my Dad. It wasn't until I was a teenager that I could see him through my Mom's eyes, her very, very tired eyes.
I'm assuming you're dealing with a personality change from him? Keep that in mind too - strokes change personality, so the old ways of conflict resolution may not work anymore.
My Mom spent the better part of the next 30 years with him telling him how he could be better. He could load the dishwasher better. He could help more around the house. He could stop snoring at night. There was no shortage of advice, ever. As I grew up, I picked up on this habit of giving him "helpful" information. Now, I'm on the other side. I had a ruptured Annie at 39, and I understand why he napped every day. I understand why he wasn't motivated to try and go back to work. I get it. And my only regret? Harping on him. It didn't change him at all, but it changed our relationship. He's not here anymore, and what I wouldn't give to go back and hug him and tell him I'm so sorry, I had assumed that change would be easy for him if he would just get "more motivated". I was oblivious. Consult this page - it's very helpful.
http://www.brainline.org/landing_pages/Family.html
There's a caregiver page too. I wish someone would have printed that out and given it to my family; but I doubt it existed yet. He had his annie in the 70's.
Again, this is a daughter-father perspective, and you are in quite a different boat with the wife-husband perspective. Here's a few things you can do right now:
1. Ask about a prescription for Concerta, it helps TREMENDOUSLY for post-stroke patients. I'm currently taking it, and it enabled me to do my current job without napping every day. I was worried that I'd have to quit my job, and I went to a neurovascular specialist who specializes in stroke recovery, and she prescribed it. My neurosurgeon never thought to mention it, and I was ready to have a nervous breakdown over having to quit my job. Some days I do still nap, but not every day.
2. Find things that make you happy outside of your home - hobbies, girlfriends, or even serving others will help give you an outlet. I know that most of your time is wrapped up in picking up the slack, but make a list of it all, and see if you can delegate anything out. Yard work? Dream Dinners? House cleaners? I don't ever remember my Mom having fun growing up, and I wish someone would have tapped her on the shoulder and told her it was OK to have an outlet to keep her sane.
You are not in an easy spot, and you're grieving too. You lost something with his illness, just as much as he did. Be gentle on yourself as you move forward; it's OK to feel the way you do. And hugs to you for wanting to help him, even though it's frustrating. Glad you found this forum, we're here, keep sharing when you need to!
Oh my goodness, thank you, thank you, thank you. I have really been working on learning to delegate in a kind way and let things go that maybe don't "need" to be done. Learning to communicate better is the key. I have my days that I have not been so great and saddens me as I hear my son that is 9 pick up on it. So each day I have to work hard at being the best wife I can be without overloading. I know in his way he has great love for his kids. Even though he isn't as active as they probably desire, but I do my best to incorporate at least one good family activity a week and encourage/ask him to do the things he is able for the kids. We are working on getting a new family doctor, so we may need to talk about some new prescriptions to see if we can get him feeling a little better, but ultimately his health is in his hands...I have enough with work and kids to be overly concerned. I will ask questions and suggest, but it is up to him if he wants to pursue it. I hope that doesn't make me sound like an uncaring wife. I wish for better, but have to accept it for what it is. I'm grateful for your perspective on the situation... You are a God send.
You’re doing the best you can, keep going! I can’t tell you it will get better but I can tell you it can get easier. You have a lot of change to deal with, it’s OK if you don’t do it perfectly at first.