Hi all, never posted here before but have been reading a lot of posts and learning a lot. I’m wondering if I can get some advise. My mom, 77, had a ruptured brain aneurysm on 2/22, had coiling and then a shunt. She was in ICU for about 3.5 weeks and then rehab for 100 days. She has a gtube and is bed ridden, but all her extremities are functioning, just weak and a matter of getting her stronger. She is making progress but I worry about how much sleep she is getting. I know that fatigue is a part of the healing process, and so sleep is required. But how much sleep is too much sleep? For example there are days when she’s awake 4 days in a row w/ naps…but those are also very active days (we get her to stand or sit on the side of the bed, or other exercises). Then the next day she is knocked out for almost 24 hours. Should we let her sleep this long? I don’t know what the right/wrong thing is to do. Mind you, within those 24 hours we are changing her, cleaning her and all this other stuff and she still won’t wake up. I just want to know if this type of sleeping is normal or should we be trying harder to wake her up.
I am so sorry to hear about your mother and the hardship you are going through as a family. It’s good to hear that you see progress. I know that the fatigue after a rupture is common and it can take months before it gets better. Taking naps sounds normal to me, but to sleep for almost 24 hours and be hard to wake up doesn’t sound good , I think this is something that has to be discussed with your mothers neurological team. Remember that we are not medical personnel even if some of the members has a medical background. We can not give medical advice, just try to use our common sense. My common sense tells me that you should reach out to the doctor and don’t wait too long.
You are doing a great job with your mother and I hope she will be better soon.
I hope you will get more answers from our members.
Thanks @oct20. I just wanted to be sure that it’s not normal for this type of injury. I’ll definitely talk to her doctors about this. She has an EEG scheduled this week, which took me forever to schedule and I feel like a horrible caregiver for it Thanks for your take on the situation, I appreciate it!
I too have a shunt and have had issues with fatigue, CHRONIC fatigue. I have an adjustable valve on the shunt and this has needed to be altered on a few occasions to regulate the amount of fluid being retained within the skull. Initially I had too much fluid, hence the shunt. Then I had not enough fluid and this caused all sorts of issues. I’d start a task, have a sudden need to rest, go sit for a minute and wake 3hrs later. On one occasion, just after I’d been discharged from hospital I was filling a water bed, sat down and the next thing was someone asking me if I was trying to make the carpet grow. The bed bladder was over full and the water had flooded the whole bedroom. DOH
Sleep is a very important part of the recovery process, it gives the brain and the body time to adjust to their ‘new normal’. Here’s a link I found that discusses excessive sleep, which may help.
Excessive Sleeping After Stroke: Why It Happens & How It’s Treated (flintrehab.com)
But I must also agree with @oct20, “…24 hours and be hard to wake up doesn’t sound good…” I would certainly agree that a consult, even a phone consult, would be highly advisable.
PLEASE, DO NOT be beating yourself up regarding the care you are giving your mother. It is not an easy role for anybody to take on and when making appointments it is not always within your control. I have been in need of an MRI scan for the last 3 months. But with the hospital systems, COVID and the shunt, trying to line up an appointment has been very difficult (I’m scheduled to have the scan tomorrow, but that could change at anytime between now and then.)
Hope it helps
Merl from the Modsupport Team
Thank you Merl. I will definitely send her neurosurgeon a message. She has a sleep study I need to take care of too, to see if she has sleep apnea. We just had so much going on with her return home with PT, OT and ST (2 months today) that the appointments outside of this house with the added difficulty of transportation just kept going to the back burner. Thanks for your help, appreciate it!
@mcelly welcome and thanks for posting! I think the others have said what I would - talk to her neurosurgeon. Perhaps you are allowed to access her portal and can ask a question from there or just call and talk to one of the triage RNs. For me, my questions would always be told to my neurosurgeon.
For transportation, check your area to see if there is transportation available for the handicapped. I notice you’re from the Windy City, there should be public transportation up there like we have. I called it the short bus, because it is or a rather large van LOL. When I needed it a time or two after rupture, it was free for me. They could even drive me the 70+ miles to my neurosurgeon for free but I never took them up on it.
Caregiving can be exhausting, so plan for time for yourself enjoying your hobbies. It’s difficult to always care for someone and not take at least a few hours every week away from the responsibilities. Our small county has an adult day care in which adults can go for part of a day or every day. They are quite inventive with the charges here and I think if my Mom or Dad or even myself wanted to use it, it was $35/week. They do a lot of different activities based on the needs of the patient and have people trained to hand out medication if needed. We didn’t use their service.
Thanks for posting!
Thanks, I sent her Neurosurgeon a message through the portal last night. Mom has an EEG appt today, so the RN messaged me back and told me maybe we can get mom scheduled for a CT scan while she’s there to check on her shunt. So I get to kill 2 birds with one stone but it’s going to be a long day for mom. She hasn’t left the house in 2 months so I"m feeling a little anxious!
This sounds like a very good plan. Take a deep breath, you are doing a great job.
@mcelly absolutely breathe! I used to read my parents that taking them for a test or procedure was like taking 9ne of the dogs to the Vet, if I stayed calm so would they . All kidding aside, it does seem that older folks, children and animals can feel energy, so staying calm is important for everyone. I think it will do your mom good to get out of the house, even if it’s for some tests.
Let us know how the trip goes and if the RN was able to get the CT scheduled for today.
Mom had her EEG & CT Scan yesterday. All went well without any issues. It was a long day for mom but she’s a rockstar. What a mission that was! We had to call the fire dept to get mom down the stairs, call them again when she got home. Thankfully we were able to secure a reclining wheelchair for mom through a local lending closet for free, which I’m glad we had cause there was no way she would be able to sit on a regular wheelchair for that long. Waiting to hear back from the neuro for mom’s test results.Thanks for everyone’s help with this
@ModSupport @Moltroub @oct20 heard back re: mom’s CT & EEG. Neuro said mom’s ventricles are small so she has to go back in next week for an adjustment on her shunt. EEG was ok but not normal so they want to keep her on the keppra just in case…dosage is still pending. Hopefully this adjustment will help and we can get mom on a regular sleep schedule. She does have to do an at home sleep study as well, so I’ll have to figure out when to get the kit. I don’t know what I"m going to do when I go back to the office 3 days/week.
It seems that problems with the shunt can cause many problems. Hope it gets better after the adjustment. I understand the worries you have when you have to get back to work. Hopefully there is a solution to this.
I’m praying for you and your family. I had my ruptured aneurysm 8 years ago next month. I was 49 at the time and I will be 57 in 10 days. In the beginning you have to remember that a ruptured aneurysm is blood spilling over on the brain it takes time for the blood to absorb and dry up so while that is happening the brain is trying to do the things that it knew how to do so everything that she does every little thing that we normally don’t think about requires a lot of thought and requires a lot of processing for the brain which makes you very very tired. Still today if I do too much in one day it may take me a couple of days to recover. Take your time and don’t rush the process because the brain is the nucleus of the body. We don’t realize how much work the brain actually does. You still may want to check with her doctor because we all are affected differently. It’s frustrating, but don’t push her too fast. Work at her pace. She’s been through a lot. I’ll be praying for her and your family. Stay encouraged.
Her shunt needs to be checked. Sounds like it’s draining too much fluid. Something similar happened to me but I was still in the hospital at the time.
@mcelly sounds like they found the culprit! Check to see if there’s an adult day care you can use when you go back to work. You should be able to do an internet search. Her Medicare may also be able to help with someone coming into your home to watch her and tend to her needs while you’re working. You can call customer service on the back of her card and ask. Remember to tell them the total time you’re gone from the home which besides the hours working is your travel time. It may be a good idea to start with them before you return to work so you’re comfortable with the service.
I did a check on the Chicago area and there a a good number of them, so I just picked one Accolade, and though their day care services are currently shut down due to the pandemic, it seems like their Homemaker Service may still be available. It won’t hurt to send emails to the various agencies and see what’s available. Perhaps one can even guide you to what you need!
Thanks for the update
Thanks, we actually have a caregiver, I don’t know what I would do without her! Extra hands here are always better than one…mom still thinks she can get up and go to the bathroom Before we used to stop her from trying to get up (she fell out of bed a few times at the nursing home). Now, if there are extra people around, we use her wanting to get up as an opportunity to get her to sit on the side of the bed as this is really good exercise for her! Except, it’s not easy to do this with just one person and I try not to ask my dad too much to help with this because I don’t want him to get hurt either.
But my apprehension of going back to work is more of wanting (sort of lol) to be here to make sure she’s ok. Thanks for the information though, I really appreciate it!
Also, the Neuro called again this morning, since mom was already on a low dose of keppra (they didn’t know the nursing home decreased the dosage) we are going to wean her off of the keppra and be done with it after 5 days. Hopefully we can get her on a regular schedule after all of this! I’m so glad I reached out here!
Lots of good news @mcelly! If the caregiver is a trained CNA/CMA, she should be able to sit your mom up on the side of the bed without assistance, unless your mother isn’t strong enoug or able to wrap her arm around the caregiver. Decades ago, I worked in a convelescent hospital and had to do it often with different patients. I would find something for your dad to help out with your mom, perhaps just sitting on the bed with her when she does sit up and hold her hand.
I’m sorry I just cannot recall the age of your parents, must be a brain fog day. My parents were pretty spry well into their 70’s despite their health issues. When my mom’s health started to decline, dad got very needy. It became too much for me and I was grounded from them. Dad finally got it in his thick skull he had to help out. He found things he could do and started back doing them. The simple chores or aid to my mom actually improved his health a tiny bit. I believe he found purpose again. He also didn’t want a scolding again from BH or my neurosurgeon
I personally think if your father is physically able to help get his wife up, the best time to teach him is while your still at home. This way you will know that their caregiver won’t have to do everything by herself. He also might be able to help her do her ROMs, I just thought of that one and am smiling ear to ear. They aren’t hard for him to do if he is physically able. Sometimes we think our parents can’t do things because they’re elderly, when in fact we often underestimate them. Just like they did when we were little.
All the best,
@mcelly , how’s your Mother doing? Haven’t heard from you in a bit and hope all is well,
Sorry for the VERY late reply. Mom is, unfortunately, still always sleepy. I feel like her sleeping is increasing even after the change in her VP shunt. I’m not gonna lie, neuro asked me to get her to a sleep study, we have an at home one we are supposed to do. I have really been procrastinating (trying to figure out when to do this), I also just started going back to the office 3 days a week. I know, I’m full of excuses but I’m really dreading putting the cpap on mom if she has sleep apnea. She hates it but I just need to suck it up because it might be what’s best for her…especially if she’s just sleeping all the time. For a few weeks we were having problems with her cough. She would cough all day and night to the point of vomiting…and it was multiple times a day. We would fix it one week with something, then it would come back. I think we finally have been able to remedy the cough (allergies…I had to buy an air purifier, changed her allergy meds again, inhaler, humidifier). And this cough was the reason why she was so sleepy all day since she wasn’t getting any sleep. But now we don’t have a reason so I really gotta get this sleep study done.
I’m really worried again with her sleeping. So I guess I have to make an effort to get the home sleep study set up so we can see if it is sleep apnea that is affecting her. Ok, now that I’ve mentioned it here I now have a goal to have this done before the end of the month.
@mcelly Thanks so much for the update! I think most, if not all of us who have ruptured can testify to sleep issues once we got home. There’s rarely a good sleep in hospital and the brain certainly needs a lot of rest. I can’t recall which procedure I had either two or three that we said something to Dr. Wolfe. Her recommendation was I don’t sleep during the day…had to recondition myself. I guess the time frame was maybe 2-3 years. She didn’t worry about it the first year. I had to have two coilings within 6-8 months of each other. I ruptured at age 53, a good bit younger than your mother.
Allergies suck. I can no longer take Nasacort or Nasonex because they make me cough hard. It was the PA at the allergist who figured it out as soon as I told her.I also learned whilst getting my allergy shots that I was switching my allergy medication incorrectly. The way the young woman who was giving me shots that day explained it was I was switching from one drug to this cousin and not leaving the family. So I now go from Xyzal (or it’s generic) to Zyrtec (generic). If I don’t, I get itchy bumps, Urticaria, all over my back. I switch about ever 180 days because that’s what’s in the bottles I purchase.
I don’t have sleep apnea that I’m aware of. Had a PA want to talk to me about it because I had several of the markers, but I asked if they wouldn’t have figured that out with my long stay in NSICU. I have other health issues that easily explain the cause of the markers. BH did a sleep study and has a CPAP, they’re nothing like they used to be. Gone is the face mask that looked like an oxygen mask, they still have those, but the one BH has has a tube that goes over the head. BH says it looks like an elephant’s trunk, I call it a miracle. We both sleep much better LOL. If your mom needs one, keeping it sterile as the directions call for is extremely important. The pulmonologist who did the sleep study said depending on the pattern, he would know which time of machine to order, I think there’s 3 types for different sleep apnea issues, don’t quote me on that! It did take BH about a week to get used to it. The skin under the nose gets irritated sometimes but my stay in NSICU taught us Vaseline is good for that.
Glad you’ve been able to return to work! That certainly gives you a break. And yes, you have a small easily doable goal set for yourself!
All the best