Caregiver with a lot of questions

In April of 2022 my wife suffered a ruptured brain aneurysm she also had a heart attack at the same time. They coiled her rupture she spent weeks in icu on a vent. Then a stepdown unit. The rehab they sent her to was neglectful and after 5 days she was back in the hospital. She is now home, while she is able to take care of some of her own needs it is not safe to leave her alone. She gets confused and can’t find the bathroom or bedroom at times.
Will this confusion ever get better?
Will she ever want to leave the house?
Will she ever get her own food?
She also makes up stuff like there are other people in the house or other pets. Does she believe this stuff?

I was also wonder about fatigue . What can be done to help with this. How much sleep is to much? She would sleep 20 hours a day if i let her.

Hey Spousecaregiver,
Welcome to Ben’s Friends.
I will try to answer some of your questions, I say ‘try’ because every person’s bleed and the impact of that bleed is very individual to that person. She is home and that’s a good thing. She is in an environment she knew and felt safe in, reorientating herself within that environment will be easier than in a foreign environment such as a hospital.

Will this confusion ever get better? Yes, it can. But it takes time. How much time? No one can give you an answer to that. Neuro recovery can take a long time and is never a straight line. Some days will be easy, but then some days will be near on impossible. I’m on a bit of a seesaw of symptoms and no 2 days are ever the same. My ‘brain fog’ overwhelms me some days and I’m lucky to be able to crawl out of bed on those days.
One thing that assisted me was to have some sort of daily routine to try and reorientate both to my day and my environment. Something that can help is having a checklist to get back into that routine. My memory, which was one of my better assets, just up and vanished. The frustration from this was HUGE, having people asking 'Did you remember to do …? Only added to my frustration as it was a constant reminder. Having a checklist gave me something to refer to as a reminder.

Another thing that helped was repetition. For example, a task may take 4 steps. Initially I may only have remembered step 1 and needed prompting to get to the next step. As things improved I’d get step 1 and 2, forget step 3 but remember step 4, but with repetition I eventually got back into a cycle.

Will she ever want to leave the house? Yes, but sometimes with encouragement. Personally, I found the outside world overwhelming. Prior, my brain/body filtered external stimuli, post surgery all of those stimuli were at their maximum, no filtering. For example, having a one-on-one conversation was a struggle, but then to have that same conversation in public was near on impossible, there was too much happening. Other people talking, vehicles passing by, bright lights etc all added up and after about 1/2 an hour it all became too much. The safest place was home, where I could control my environment.

Will she ever get her own food? Yes, but again, with support and encouragement. When I was alone I doubted myself. Am I doing this right? Did I remember to do ‘X’? One day I forgot to turn the oven off, I’d left an element on almost started a fire. This destroyed any self confidence in the kitchen and I avoided it like the plague. My wife started to get me to assist her in the kitchen, reorientating myself with the ‘normal’ everyday tasks, rebuilding the skills I had. Now, some of this took some adaptation, using timers to remind me and charts to remember the steps involved. The kitchen is the most dangerous room in the house, you have heat, you have sharp knives, you have electricity, you have hot water. So feeling safe in the kitchen is VERY important, my self doubt was HUGE and the easiest way to deal with this was to avoid it all.

Fatigue? This was one of my biggest obstacles (and even years later still is). I tire easily and it isn’t just my physical activity than tires me, I find mental fatigue a major battle. My own self doubt and second guessing myself can drain me really quickly.
Sleep is not a bad thing, especially for neuro patients. Our body’s use sleep to recharge and recuperate but again, trying to maintain a routine sleep pattern can help a lot. I have found that if I overdo it today I can pay for it for the next couple of days. Trying to maintain that routine sleep can be difficult when exhaustion takes over. Trying to find that balance between activity and sleep can be a real case of ‘Hit’n’Miss’. Some days I can get that balance perfectly and some days I don’t.

Merl from the Modsupport Team

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Thank you for that information. I am filled with self doubt. I am trying to do the best for her if i only knew what that is. I don’t find medical professionals very helpful they do not seem to have any answers.

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OHH, I can assure you, that’s normal. But trying to do your best by her, that’s as good as it gets. When it comes to neuro support there is very little in regard to what is best. Trying to get answers from the professionals, well, good luck with that one. Every specialist I’ve spoken to has had their own opinion, their own views and seem to be very quick to minimise/discredit any opinion outside of their own views.

By no means am I saying I have the answers either, because I don’t. I am merely sharing my own experiences on this god damn awful journey and if anybody ever tells you ‘It’s easy’, they have never been in this position themselves. This ‘recovery’ thing is a slowly, slowly process and a learning for everybody involved. Patience is paramount because the frustration for you both can be HUGE, I don’t know how my poor wife puts up with me sometimes, I have worn her patience right down.

Merl from the Modsupport Team

Janine, you have a lot on your plate! Make sure you take breathers away from your wife where you can focus on something else. BH used work and not anything fun after I ruptured. Don’t do that, do something you enjoy. For me personally, after I ruptured and eventually sent home, someone had to babysit me. I slept all the time, might be awake for an hour or two max at a time. I was one of those people who could get by on 5 or 6 hours and sometime had a lot less due to my job. I think it was around year two that we started complaining about it to my Neurosurgeon and she suggested I reteach myself to sleep at night and stay up in the day. It was quite the effort to do so, but with the help of my family both near and far, I was able to only take one nap during the day and just for an hour or two.

The confusion for me eventually did get better most days, there are still issues I have and they can be worse if I’m under any amount of stress. The more stress-the greater the confusion.

I despised going out in public that first year or three. Mostly because the noise and lights would just give me migraines that never stopped. I was okay at home and developed a system of going through my day with the help of my parents who lived near by, BH, and a niece in California. I couldn’t remember what I did so they’d offer prompts. So home was a safe place for me. Back then, my life was centered around caring for my parents, the new dog and going to medical appointments so I used whatever I needed to use to remember, sticky notes and white board at first then my phone.

We have a sign that says “Comfort and Joy” by the bathroom door. The other side has one of BH’s Degas artwork. We put it up for guests during the holidays one year so they’d know which of the four doors on the same side of the hallway to use. Yes, I used to go into the wrong room, so it helped me a lot. The bright side of it is everyone laughs when they see it. You might want to try hanging some artwork to help her remember which door is to what and where the rooms are.

As for getting her own food, BH would make me lunch when I was finally able to stay home by myself because I forget to eat or when in pain, I don’t want to eat. It was easier to remember to eat if someone was with me. Mom was reteaching me how to cook but then she up and died on me, go figure. I am still not allowed to cook unsupervised. This is a doctor’s order due to something I must’ve done wrong with the Speech Therapist. And then a few months later, Dad wasn’t willing to come into the kitchen to supervisor me and I burned lunch. I’ve also burned and melted a tea pot on the stove because I forgot I turned it on. The tea pot was a simple fix, I’ve got one that has an auto shut off. I’ve learned I can do all the prep work for a meal given enough time. I just put every thing in their own little bowls so BH just has to throw it all together and double check I didn’t forget something. Recipes are complicated for me to remember and sometimes I skip an ingredient or two, sometimes I add double or triple the amount. BH just has me remeasure things now if they look wrong. I’d get upset if I wasn’t told and could correct it myself.

When you say

it may most likely be because it’s not their area of expertise and not the way you’re asking the questions. That’s my guess anyways. I wish every professional would say they don’t know when they don’t, it would make life a lot easier. It’s what my Neurosurgeon does at any rate and I really appreciate it. Because we live so far away from the hospital she works at, she doesn’t know what’s available in our county. She does try and her advice as well as my Neurologist NP’s has led me to discover work arounds.

You might want to see if you can get her into working with an Occupational Therapist and either a Neuro Psychologist, or someone specializing in working with brain trauma either stroke or TBI’s or a Cognitive Behavioral Therapist with experience in brain issues. Any of her current medical practitioners, from the PCP to the Neurosurgeon may be able to point you in the right direction. There may also be some type of Adult Day Care available in your area that she can attend even if but a few hours a day.

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May i ask how long before you could be by yourself? We don’t really have much help. I am currently able to be home but at some point i will have to return to work. At that point i will have to hire a caregiver and have not figured out how that will be financially possible. My wife thinks she is fine to be alone so that will be a situation too. There is an adult daycare But I fear it would be very difficult to get her to go I hear a lot of no I’m not doing that.

Months I believe as I had to have another coiling procedure six months after I ruptured. I will ask BH as it may have been two or three months at first I couldn’t drive anywhere and then was able to drive about three miles max. You may need to tell your wife that she needs to work with you. Don’t let her get away with stuff she wouldn’t have prior to rupture. It will make her mad, but remind her that y’all are partners in this game of life and you need her help. At some point, my. Neurosurgeon grounded me from my parents for three weeks! I ruptured in 2013, Dad died in 2015 and Mom died in 2016 so it was all still early in recovery for me.

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Its been 6 months since her rupture. There is often not any rationalizing with her. I still can’t leave her alone for more than 20- 30 min. Thank your for your input.

I asked BH and was told a bit over a month, but doesn’t really remember. We had to put Trouble down a couple weeks after I got home. By Jan 18 we had adopted Ohana because I didn’t want to be by myself and without a dog. BH had to make my lunch unless my Mom came over. Sometimes one of parents would pick us up and we’d stay most of the work day with them. I was able to drive the two or three miles to their house by March. Driving was extremely difficult for me. I was at the Neurosurgeon’s office about every two to three weeks back then.

Look at websites that deal with TBI’s as they will have some good suggestions on how to deal with people and the quirks we develop after rupture. Here’s a start Cognitive Problems after Traumatic Brain Injury | MSKTC
I imagine her frontal lobe may have taken a good bit of the damage from the rupture. Not being a Dr, I don’t really know. To say I was easily confused would be an understatement. To say everyone had to change the way the way they communicated with me the first few years would be dead on. In fact I was still having problems until my last procedure Dec 2020, so that would make it about 7 years! My aphasia was really bad and if someone tried to give me the word I wanted and it wasn’t the correct word, my brain would just stop functioning at a higher level resulting in no words.

I would become easily agitated if someone told me what to do rather than asking. After all I am an adult is what I was thinking and do t need to be told what to do. I may be a bit oppositional by nature, I blame my Dad and his genes🤪

When I decided I had to be tested whilst discussing issues with my Neurologist and BH who back then went to all my appointments, we came to the conclusion I needed to see a Neuropsychologist. I called Dr. Gary Indenbaum and we didn’t have to wait too long to see him. The first few appointments were more of the counseling talk type. He wanted to wait a couple of months after the second procedure before I took the two tests. When he finally said I could be tested, he suggested I take the short bus. I took it once and didn’t do so well by the time I got to his office. The driver opted to change the rules and I couldn’t handle things like that back then. So I told my family and Dr. Gary I was going to drive by myself. BH, Dr. Gary and myself came up with a route that kept me off the busier streets for the 7 miles and I left much earlier so I could arrive on time. I can’t stress the importance of the two of us working with him. Unlike all the medical professionals with the exception of Dr. Quintero-Wolfe, Neurosurgeon I had back then, he talked to me and not BH. Dr. Gary and Dr Q-W have always extended the amount of time they take with me, have always turned down the lights so my brain could function, etc.

Please touch base with her Neurosurgeon and let them know what’s going on. Also find someone who specializes in treatment through counseling. Whilst I wasn’t happy with all the rules I had to follow, I never became overly argumentative because the professionals and BH allowed me time to process with them. It’s a game I know well working with children or parents with behavioral difficulties - make the person think it’s their idea. It’s called empowering in some circles, some refer to it as manipulation, but done right it is very effective. Small goals first lead to achieving the desired outcome. Praise when given at the correct time and in the correct way is priceless.

Hi @Spousecaregiver

I just want to say I think you’re doing an incredible job (and almost certainly an unreasonable amount of work looking after your wife).

Irrespective of whether she wants to go to a respite centre, if you can, talk to her about the importance of going somewhere like that (perhaps on a regular basis) so that you get some respite. This is important for you and as you need to get back into work may be one of the options you can use to let you get back to work.

I second what @Moltroub said about an OT – occupational therapist – who could do a bunch of the coaching that Merl describes his wife doing for him. It doesn’t all have to fall on your shoulders. At least, find out what sort of such services your insurance will cover.

I live in the UK, so I don’t know how general social support services work in the US but over here, we can get some support services to come into our home to help someone with basic tasks – getting dressed, eating, washing, etc. If there is any such social service that you’re able to tap into, I’d find out about that as well, again to allow you to let go of a small percentage of care but also as a way to you getting back into work: you’ll want these things in place and running smoothly before you commit to work again.

I think you’re doing an amazing job.

Richard

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Janine, to further emphasize Mr. Richard’s statements, you may have the option for in home OT, ST (speech therapy) and PT (physical therapy). It does depend on what her insurance will cover. Please call them today if you can. They may also have a few weeks of therapy they will pay for. I can’t remember if mine was 8-12 when I worked with the health insurance we had back then.

Since disability is a trial and marathon in getting it, sign her up if you haven’t already and hire a disability attorney. The attorney will only take a small percentage but a good one will get all the back pay owed. Personally, I had to exhaust my comp, sick days and vacation time before I could even apply. The long term disability I had paid into for almost 20 years wouldn’t help me because by then I could drive the three miles. Just the fact that I could drive on semi rural roads made me unable to qualify. Please don’t wait on this as the backlog in getting approval can often be around two years.

I discussed the issues you’re having with BH as BH was of course my primary caregiver. BH said if she had to she would have put me in an adult day care facility whether I wanted to or not. I replied that I think there would have been strong words coming from me. BH said it would be irrelevant how I felt, sometimes we have to do things we don’t like in life and that’s how BH would approach it with me.

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I’d like to add here ‘A marathon’ (the foot race) is often easier. I had a disability insurance policy and that was difficult enough even with a lawyer. But the government payment… …ohh that was excruciating. The sooner you start the process the better. They will want every piece of paper, every report, every scan and if you don’t lodge it all in the right order, they can have you start the whole process again.

I must agree with Moltroub regarding exhausting comp, sick days and vacation time. I must also agree with her statements in regard to long term disability. They will try to disqualify any claim in any way they can, so assure you know the policy and it’s limitations. I had investigators outside my home. They followed me when I left. They spoke to my neighbours, trying to get any information to discredit me. Personally, I think they take so long and make the process so difficult, so that the claimants simply give up the claim in frustration. It can take real determination to persevere.

Merl from the Modsupport Team

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I mean this is funny but it is also deadly serious: honestly, as a caregiver, you have to find a way to make living (working, eating, sleeping, caring and fitting something nice or relaxing in somewhere) survivable. It is vitally important to your wife, @Spousecaregiver that you can live your life in a sustainable way because if you find it too much or you can’t get to work, it’s going to be zero life for either of you.

When you’re on an airplane and the pressurisation fails, they tell you to fit your own oxygen mask before attending to others. It is just as important to put yourself first in this situation as that one. If you fail, she has noone. You absolutely have to look after yourself. It’s an unnatural thing to prioritise yourself with a loved one but it is vitally important for both of you.

Hope some of this might help. I apologise for what might seem blunt but I believe it.

Very best wishes,

Richard

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She has had PT and OT thru home care for 6 weeks twice. She is currently receiving speech
as an out patient. Today she refused to get ready would not put on clothes told me no and to shut up. How do you perpose i force her to do those things. I have told her neurosurgen and he sent me to a physical medicine doctor who gave he some different medst he doctor then told me at the end of the day i can’t force my wife to do anything and suggested a therapist.
My wife has said she does not want to talk to someone. I made the appoint anyway we shall see if she will refuse to go.

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It sounds really difficult! It’s good that you’ve got PT and OT going on.

You’re in a really difficult place that’s for sure! It may end up with you getting ideas from the therapist or the therapist coming to your home. It boils down to communication skills I imagine and we don’t know the two of you personally so advice is difficult to give.

I remember I had to rely on BH’s memory from that first year on my personality changes. Mostly I remember the excruciating headaches that never went away which made me quite the challenge I imagine. BH said that learning to make things my idea was a hurdle but was done. BH remembers I had a strong opposition on going to any doctor and would have to remind me they weren’t going to give me shots in my stomach. Those heparin shots hurt like the dickens. I didn’t want to go out at all but Dr Quintero-Wolfe said I needed to. BH thinks she didn’t want me to get depressed. So we worked out going to breakfast with three friends very early before the rush crowd came. I remember some of our best friends tried to talk to me as a child and I’d get frustrated. They learned to use simple words and not the big multi-syllable words. We all had to learn to keep everything dark as light was excruciating painful and I’d get really confused and agitated. Sound from the television or radio could throw me into a migraine and though I’ve worked hard at it, it still can happen even this far out.

When is she the most rational? Are there any specific times of the day that she can have a conversation? If so, try talking to her then and remind her that going to seek help will benefit the both of you. Check the side effects of whatever medicine she is on, especially the rare side effects. You may have to go the pharmaceutical company’s web sight or talk to the pharmacist. There were several meds my second neurologist tried that gave me some weird behavior. I remember telling his assistant on a couple of them that not only did I not like myself, but our new dog didn’t like me at all either. She wasn’t but around six months old when we adopted her and she wouldn’t come near me on those meds,

Does she have a friend that she talks to? I remember I would do almost anything for our Veterinarian. She’s one of our good friends. She didn’t change the way she spoke to me and instead of pity for what I couldn’t do, her and her sister would just tell me what I needed to do. We’ve had the same Vet going on 30 years now so a bit different than most folks. I remember up until Dec 2020 and my fourth procedure, I had to call or text Aunt Dr. Kim as we call her before we took our dog to the ER Vet. Something I’d decided was a constant necessity. I used to know what was a true emergency and what wasn’t. I couldn’t remember how to administer first aide to an animal.

If you can get her to come up with her own plan of action for the day using sticky notes, whiteboard, her phone to help her remember that may help her feel like she’s accomplishing something. I remember learning from one of my Dad’s Speech Therapists to brush my teeth first thing in the morning. I told her no the bed has to be made before I leave the bedroom and then I have to go potty. She didn’t blink an eye and said after I wash my hands, brush my teeth. I’m still doing that and get confused if I don’t follow that “rule”. Go figure…

Also for me, I had to feel like I was contributing to my relationship with BH, my friends and my parents. My parents gave me too many chores to help out with but eventually they learned my limits and learned to thank me instead of just expect me to do whatever they needed. Not thanking me would not be good for BH as I’d get on like a scratched record and couldn’t let it go. Our friends would ask if I could take their trash can to the road when they left for their traveling, it felt glorious to drive the mile or two and so that seemingly simple task but it wasn’t simple to me at that time. BH would praise me when I did something around the house saying things like “Good Job Honey, that really helped me out.” so a bunch of self esteem building. “Good job” is an inside joke, it’s our way of saying thank you. We have always used good manners with each other, so please, thank you, do you mind, yes and no ma’am are ingrained in our relationship.

I’ve written too much again, but I’m at a loss of suggestions I guess. Take a break from your wife, even if it’s just for an hour or two. Make it the same day every week so it becomes a routine. Seems after rupture we really need routines much like someone which ADHD or Autism.

We hear your frustration and remember we are here for you even if it’s just a sounding board. It has to be extremely difficult for you having a relationship change so much.

Wow! You are an amazing husband :heart:
I’m going to do my best to try to remember your list of concerns.
I was in the same condition as your wife.
Given time, your wife will improve.
Be patient.
Let her sleep​:blush: I too was sleeping 20 hours a day for months after. Her brain is recovering :blush:
I too was hallucinating. I’m going to guess that, once again, it’s part of the healing process and eventually will subside. Mine did. It was also very concerning for my husband :disappointed:.
Being “lost” was also normal for me & I still, 33 months later, find myself not remembering where I am. But, I’m improving day by day. Have faith.
Her brain is going through a huge recovery process and, like my husband, you’ll have to get to know the new version of your wife. Excessive stimulus of the outside world is overwhelming. It “hurts” our brain. Just a simple outing of being driven to the grocery store & picking up a few things would “zonk” me out for a couple of days. I’m tired now but not “zonked”. You might notice that she’s getting frustrated with herself as well. I find I need to get outside into nature for a bit often for my mental well being.
Big hugs & positive thoughts❤️

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I thank all of you for your suggestions and personal stories. I am shocked at the amount of time for recovery that all of you have shared. I am really
having a difficult time figuring out how to pay for care. It costs more than i make. I have looked into daycare but it opens a couple hours after i start work and there is still the issue of talking her into going. If i consider a medicaid spend down that still only pays for limited home care.
I understand our life will never be the same. My hope for now is for her to be able to care for herself in a safe manor. I also hope that she is not suffering as it sure looks that way.

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Janine, you will know when she is in pain by her body language, if she won’t tell you. I would grab my head or cover my eyes/ears depending on what was painful. Sometimes when a person is in pain they snap out words they wouldn’t normally use. There’s a lot of internal issues she may be going through as she’s still in the healing stages, both physical and emotional. It’s hard to understand why our brain ain’t working the way it once did and sometimes we can’t find the words to describe it.

Health care is confusing and expensive, no doubt about it. Have you started her disability process?

Did she go to the therapist?

Keep on her PCP, her Neurosurgeon and her Neurologist which she may have by now. The squeaky wheel is the one that gets greased. You might also want to reach out to these folks https://www.drmich.org/ and ask what services she can get and how. They will know more about what’s available in Michigan for her and who to contact.

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