My Husbands Energy Level

[tlc4pit]

Hello everyone!

My husband had a ruptured aneurysm on Mar 26, surgery apr 3rd. With God’s grace he survived and has all his faculties and no speech impairment.

However, I am worried about his sleeping pattern and energy level. He wakes up twice at night; 1230am and 3 to 3:30am. He goes to bed around 930 10:00pm. Then he sleeps alot the next day because he’s tired. So it’s a vicious circle that has been going on for months. We’ve tried several sleep aids, and nothing helps.

In addition, I can’t get him to start slowly getting active. All he does is watch TV all day or scroll thru Facebook watching videos. I can’t even get him to walk 15min. I believe he is depressed, but he doesn’t want help. He thinks it will go away. I told him his brain needs energy to progress, and by doing zero activity daily, he will never progress.

I feel bad because I suffer from depression and anxiety, so it’s hard for me to be strong because I’M DEPRESSED. I get frustrated with him because this is not his personality. He is strong, disciplined and would never let something beat him. I’ve told him this. Yet, he just tells me to stop worrying, he’ll get better. Then he just goes back to his TV. It’s like he’s listening, but it’s not registering. I don’t know if that makes sense.

I don’t know if this is going to be the norm, or if I need to get off his back. It scares the hell out of me to think this might be the norm.

Has anyone experienced this as a spouse taking care of a recovering spouse?

Any advice would be so greatly appreciated!!

Thank you

Traci

Sent from Yahoo Mail

[Moltroub]

Hey Ms Traci! I’m not the spouse caregiver, just the ruptured brain person. But I can share a few things as I also had abnormal sleep patterns after I ruptured. Of course, as you know, there’s no rest in any ICU but NSICU has some angel that checks us every 15 minutes. Then there’s all the rounds. I worked mostly nights so I wanted to be awake at night and sleep during the day. It was hard for most of the doctors doing rounds to understand. It took me a couple of years to get on the sleep pattern of BH, or at least as close as I could get. When I got home my sleep habits were a wreck, it was waking up a lot and sleeping a lot. Around the end of the second year, BH told my doc and she said I had to practice being up through the day and sleeping at night. She was correct but it sure wasn’t done in a week nor a month. I think it took about six months or more. I’ve never been like BH who can fall asleep immediately, I’ll go to bed but usually read for an hour or more, always have. Since my last repair, I’ve taken to napping after my lunch so I wait to eat until after the chores I can do have been accomplished.

I had major problems understanding what people would say and it took a good long time to figure that out. Once the all the time migraines stopped it became easier. This year we found out that my pain level correlates with my ability to understand people, I didn’t know that could even happen! That may have been my issue back when I was having migraines. It’s hard to concentrate and comprehend someone when you’re in pain. Maybe he is having some type of migraines. Has he been to a neurologist yet?

I had to relearn what my feet were supposed to do in NSICU and we started walking! First just to the RN station and then to the end of it. It took a lot out of me. I was afraid of losing the ability to walk because of my lumbar surgery the year before.

When I got home, I did walk every day, I couldn’t have done 15 minutes at a time the first several months as it was exhausting. I did walk our driveway or my parents as much as I could. Parents had a nice sloped drive, so mostly flat, ours was steeper. One of my parents would walk with me. Walking with Dad was comical because we both ended up walking into each other. Mom would keep look out at the kitchen window🤣. I used the expansion joints to track how far I walked. Then I started walking our back yard with our new dog, which helped a lot. Dogs need walked.

Does he have a friend who can come and take him out? Hang in there and make sure to take care of yourself!

[ModSupport]

Hey TLC,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends. I don’t have an aneurysm, but have required a few other neurosurgeries to deal with another little nasty in my head.
Firstly, I have to agree with everything Moltroub has written. Before all of this started I was working in a fairly high pressure role. I was ‘on-call 24/7’ if a client called a 2am, I was working at 2am. Post surgery my energy level didn’t just drop, they plummeted. I too was concerned. I got into my head "I could before, so I can now’, only I couldn’t. I tried to push myself a bit more, to recover quicker, only the more I pushed, the more my body pushed back. I had to relearn all of my tolerances. What used to be simple task was now exhausting and I was getting VERY frustrated with it all. I had to learn to listen to my body and I hated it. Previously I had 2 speeds, full tilt and stopped. Now, even 1/2 paced was sometimes too much.

I spoke to my medical team about all of this. Sleep is not a bad thing, it’s when our body’s recharge and recover. Like Moltroub, my sleep patterns were a mess, but the medicos explained to me that this is normal as we recover. Often the dr’s like to give us a 6-8wk timeline for recovery and sure for the external wound 6-8wks is about right, but the recovery of the brain itself, ohh, that can take much, much longer. And it’s not a straight line of daily progression either, I can have days of such clarity, it’s amazing. But then have days where I feel like I’m walking through treacle and every step is a challenge. I’m 10+yrs on from my last surgery and I still have those ‘Treacle’ type days.

Some people can recover really well and I must admit for my first surgery I bounced back, but after the 2nd I got no bounce at all. I got frustrated and angry with myself, I kept pushing myself to recover quicker, something went POP and I ended up back on the operating table. I had to learn to listen to my body and when it said ‘stop’, I had to stop. I know I can push my limits but there is always a cost in doing so, usually in agony with a headache from hell.

Merl from the Modsupport Team

[Spousecaregiver]

Fatigue is a common problem for SAH survivors. Some people recover well. My wife had her SAH April of 2022. It is still a difficult situation. We have been to her neurosurgeon, neurologist, primary care, psychiatrist, and physical medicine doctor over this and other issues related to after effects of her aneurysm. If it was up to her we would never leave the house. She sleeps more that 15 hours a night and only gets up when I pull her out of bed. She has fallen a sleep everywhere. This includes dinner at a restaurants, movies, Thanksgiving family dinner, peddle bike, on the toilet even during her doctor appointments many times. She has tried 4 or 5 different medications for fatigue and cognitive issues. None have been the cure. She is a very different person than see was before. At this point she still needs a caregiver for her daily living activities.

[FinWhaleFan]

Hi @tlc4pit/Traci,

I am so happy you decided to reach out! We are all here to support both you and your husband.

Like @Moltroub, I had a rupture, so I do not have the experience you do. That being said, there are a few things I did want to offer up for your consideration. Before I do, I do want to say I am NOT in the medical field, but can only speak from the patient experience, so please listen to your doctors over me - their opinion matters far more!

First, and I say this with all the warmth and tenderness in my heart to you both for what you have been through, please consider speaking with both your doctor and your husband’s doctor about your emotional well-being. Again, as a layperson, I understand that depression can be quite common for those who have had a brain injury, so speaking with his doctor about it is important - much less about you too, since you are managing a tremendous amount as well!! It will be very important for them to understand how recovery is going, including both physical and mental recovery. They will be able to help guide each of you separately.

Second, do you think it might be helpful for either you and/or your husband to reach out and join a local (or virtual) support group? From a quick online search using terms such as “aneurysm,” “support group,” “caregiver,” and (e.g.) “Phoenix,” I found a monthly one, as I think it might help you to connect with others to share experiences (thinking of a caregivers one separate for you, so you have the space and support you separately need).

Of course we are ALWAYS here for you as well, and please do not hesitate to reach out when you need to ask or vent! (Personally, I have done both online/virtual and find different groups helpful for different needs.)

I completely agree with what my friends have said for a ruptured patient: fatigue is real (and different from how I would have described fatigue pre-rupture - this ranges more like exhaustion). What I have noticed 18 months post-rupture (along with many incidental complications) is that I am slowly sliding to more of a normal sleep pattern. I am by nature a morning person, and used to get up for work at 4:30/5 pre-rupture to start my day. Generally post-rupture I would get up and moving at 8:30/9 (I would still get up at the normal time, but would need to sleep again until later in the morning). I find myself now not being ABLE to sleep that late, so it anecdotally seems like I am reverting to my old routine, although Me 2.0 will not go back to my old habits again - life lesson learned!

As @ModSupport/Merl said, I had to learn to listen to my body - something I had never done before either. Thanks to my fabulous Speech Language Pathologist - who was Brain Injury Certified - I learned what that means to me, so I can pay attention to when I am getting my warning signs, and then manage it with my various types of “boosters” that help partially restore my energy. In short, my fatigue has not gone away, I am just learning how to better manage it, rather than have it manage me.

Finally, I have become a fan of gratitude (jounalling, gratitude jars, whatever suits you!) - a life lesson learned during the pandemic, but completely drilled into me during this time. I understand that - with time - it can help with depression, but again, I leave it to the medical professionals to make the official claims.

Sending you both healing thoughts and prayers!

Fin Whale Fan

[Kimoy]

Welcome Traci,
Like FinWhale, I am sharing from a patient perspective and everyone’s experience vary as it relates to recovery, fatigue, etc.
I ruptured January 5th this year, and like your husband, maintained my faculties. After being coiled a few days later, had a coil/stent procedure of a second smaller unruptured aneurysm 3 months later (April 2), re-stent of that second one another 3 months after that (July 19) and then finally, stent of the original ruptured one a month ago on Halloween(!). Btw, has he had any follow ups since April - no stents or such?

I also “appear” to have all my faculties and no impact on speech. The last visit with my neurosurgeon though (last week), I asked what he “typically” saw for recovery with a patient like me. He cautioned that it is deceptive that even if I “appear” to be interacting and “present,” a subarachnoid hemorrhage, which happens with a rupture, will 100% have neurological damage, thereby disrupting neural pathways. In my case as it relates to my job, he advised that it may likely affect high executive function that would make my job difficult for me… and so what does that mean? This is one definition Executive Function | Psychology Today but you can Google some more of course.

Again, this is based on what I understand from my doc and what I have interpreted - totally open to any alternate views on this from other members and their own experiences. All that to say, that it would seem to me that your husband’s executive function to “control” scrolling FB and just staring at movies and series after series, is likely from the neurological damage he had(?) that impacted his Executive Functions. Again, I am no doctor, so take this with a grain of salt. It could also be depression as you say with a dash of PTSD from the realization of what “could have happened.”

Short term, bite-sized things he can do to reconnect his pathways according to my neurosurgeon — reduce screen time, read physical paper books (not on the phone/electronics), make notes from reading with pen and paper, journal and if he is so inclined, doodling or painting:
A little art therapy. I am personally working on doing these myself, since it was kind of news to me, but I suppose logical.

One last bit that he shared in response to my question is that it could take two to five years to reconnect the pathways that were disrupted by the rupture — meaning I need to work on redeveloping my executive function skills by doing those tidbits mentioned above. It has allowed me to give myself some grace when I can’t focus or “get things done.” It can be very frustrating and depressing to not move the speed you used to. I like @FinWhaleFan’s suggestion to also connect with a support group. I haven’t done that myself, but I see my dog park friends and I also noticed this weekend with friends over for Thanksgiving that it really pepped up my spirits. I suppose, if you are religious, going to church and connecting with a community can also help.
—
Adding to my post:
Oh, and yeah, fatigue is something I have to manage as well - I take a 45-60 min nap every afternoon. With reference to the waking in the middle of the night that you mentioned… for a few months after I left ICU, I did the same — waking in the middle of the night — I would say more so from PTSD of sorts, crying, replaying things in my head. Not really sure how it subsided other than I would play some meditation/soft acoustic music to distract my thoughts (I think I did a trial on one of those apps, but Amazon Music has a station). I still play it to take my nap. My husband said he actually found it relaxing, so didn’t mind me playing it to go to sleep.

All the best,
K.

[FinWhaleFan]

Our wonderful @Kimoy brought up a few great points that I want to tack on upon from my patient experience.

1. When I worked with my wonderful SLP (speech language pathologist) to manage a nunber of things - including fatigue - I tracked my tasks along with a corresponding energy level. One of the things that I learned out of it was that things I was doing to relax were NOT relaxing! [Again all my personal experience, so may not be true for others.] So, screen time (yes, that means ALL tvs, phones, and any computer screen) is NOT relaxing to the brain. Reading, also, NOT relaxing because your brain is working! The brain - especially with ruptures - has been through a very cataclysmic event, and it needs time to recover, as in months and years, not weeks. The good news - as explained to me - is that NOTHING has been lost: all the files are still in the proverbial file cabinet, or on the floor nearby. They just got thrown around in the “earthquake,” and as Kimoy noted, it takes time to find the files again - i.e., rebuild the pathways.

Items that are relaxing are art, music, meditation, etc. so it is a great time to lean into the creative side of you. Unlike many of our talented artists out here, I can’t draw a stick figure, but there are still adult coloring books and neurographica for people like me - and, of course, doodling as Kimoy said.

2. Speaking of my SLP, one thing she taught me was about the Pomodoro method. Here you do tasks in 20-30 minute sprints, then stop, and check in with yourself: are any of your signals suggesting you are getting tired or exhausted? Stop and take a break, do something to boost your energy, and then start again (as appropriate).

As I was looking around for stuff on the Pomodoro method, I stumbled into something called Brain.fm. They have some free samplers on YouTube you can try out, with - of course - a paid subscription for the full package. I have only tried out the sample videos, but hoping for the membership as a gift over the holidays.

Basically Brain.fm is music - supposedly based on neuroscience and tested on people - that help you (e.g.) improve your focus. They base it on the Pomodoro method, so each is 20-30 mins in length. Not surprisingly, I have found the freebies to be really helpful, hence why I am hoping for the full membership!

Of course, he may not be up to 20 just yet, but go for 2 minutes instead, and then just keep expanding. Again, listen to his medical team for advice over me though!

3. Just a minor note, Kimoy has had more stents than I! I only had a coil for the first 16 months post-rupture, and did not get my first stent until October (I wanted it to be on Halloween as well as Kimoy, but my doc was off to be with his kids!). My aneurysm was starting to grow again, that is why he wanted to place a stent to kill it off entirely. So, don’t necessarily be concerned as to whether or not a stent is installed, it just depends on what is happening to his “annie,” as we call them.

Sending good thoughts to you both!

Fin Whale Fan