{Panic Attack} My Second Nervous Breakdown

My second nervous breakdown came about 1 month into being home. So after living in a hospital then rehab facility for 2 months, I moved him into my aunts house (she has dementia) where we have full time help. My initial assumption was he would be walking by the time we got home so all they would have to do is keep an eye on him.

Yea that didn't happen

He was an agitated and aggressive mess the first few weeks. For his safety I had to keep him restrained to his wheel chair which pissed him off. Despite a bed rail & bed alarm he managed to get out of bed and get semi-seriously hurt (not sure if this was the fault of the overnight caregiver) so then I had to start sleeping at my aunts on a couch in addition to be here all day every day.

I gave up my job, my hobbies, my friends - To care for this new hateful combative and physically abusive person who was so mentally incapacitated he didn't know any of this was going on.

One day, I'm sure again due to lack of sleep - I lost it.

He kept going on and on about my aunt needs to go to the bathroom.
We had just taken her, he saw her on the toilet (she uses a bedside commode) and kept pulling all her things off the table and pulling the table out from her (she's late stage dementia wheelchair bound) and after about 10 times telling him we just took her I just started screaming at him. I was enraged enough to scare my brother into calling half the family over. Prior to their arrival I ended up on the floor sobbing uncontrollable unable to catch my breath - All whilst my dad is still calling me stupid and trying to get my aunt to the bathroom (he's in a wheel chair too...)

My brother kicked me out of the room and took over with my dad. Amazingly he was able to calm him down, the family members got there, and my xanax kicked in. My aunt, the one who saved my ass the last time this happened, stayed the night so I could go home and get a good nights sleep - and then we resumed the normalcy which is my crazy life.

Lessons learned... Sleep is essential. I'm only 31, I've pulled plenty of all nighters, drunken nights out having to be up early the next day, but, none of those were in combination with the amount of stress, pressure, and depression of this new life. Staying up all night to make sure he doesn't fall out of bed was doing nothing but increasing the likely hood of me having some health disaster. Next, Sometimes you have to walk away. It's very hard for me to grasp that I'm talking to someone who's missing a good portion of their brain - Because he's cognizant and smart on so many other levels, I expect him to understand what I'm saying when I say "She just went to the bathroom" Tag team another family member in, it seems sometimes he's just plain ole' sick of listen to me all day long, and needs someone else to tell him to stop.

Finally, it's okay to loose it, you're human. Should I have been screaming at him at the top of my lungs, no probably not - But I did tell on myself to his psychologist who told me just that, you're only human, just try better next time and gave me some diversion/distraction tactics.

The next four months would yield less and less of these crazy events leading me to lose my shit, that or I've just learned to cope better....

How Amazon Subscribe & Save, Saved my Life

So prior to my dad's stroke I was also caring for my aunt who has dementia. We had full time caregivers, and I managed all her medical needs, grocery shopping, meal prep, etc. When my dad had his stroke all that went into a shit-storm....

I made due while he was in the hospital, but then I found this magical thing called Amazon Subscribe and Save. I can set commonly used household necessities such a toiler paper and coffee to just automatically ship to the house once a month (or however often) and I don't even have to think about it! Pretty much everything you can dream of is on there except produce, which I use services like Door to Door Organics and Shipt for.

Basically, I never have to leave the house / when I do get to leave the house I can do things that are actually fun - And not have to worry about household crap like grocery shopping! The prices are quite comparable to traditional store prices and if you have a prime membership you get it in 2 days!

You can browse subscribe and save eligible items here or just search in the top search bar for "toilet paper subscribe and save" Below is a list of our common household items.

Ensure Regular Nutrition Shake, Vanilla, 8-Ounce, 16 Count	Cottonelle Ultra ComfortCare Family Roll Toilet Paper, Bath Tissue, 36 Rolls	Dixie HD Paper Plates, 10 1/16 Inches, 44 Count (Pack of 5)	Maxwell House Smooth Bold Ground Coffee, 30.6 Ounce
Hefty Slider Freezer Bags, Gallon, 70 Count	Ocean Spray 100% Juice Cranberry Pomegranate, 60 Ounce Bottles (Pack of 8)	Kleenex Ultra Soft & Strong Facial Tissues, Medium Count Flat, 170 ct, 6 Pack	Palmolive Dish Liquid, Crisp Orchard Burst, 28 Ounce
Dole Fruit Bowls, No Sugar Added Diced Peaches, 4 Ounce, 4 Cups (Pack of 6)	Glad Pressn Seal Wrap, 300 Square Foot Total

InLinkz.com

Transitioning to Home After Stroke - 12 Must Have Home Care Items

Things get real when it's time to go home. Depending on the level of your loved ones disabilities, you need to prepare for this as far in advance as possible, and if you're hospital/rehab is like ours - They aren't going to be all that helpful. They will set you up with your initial equipment order which most likely will be a wheel chair and/or walker and that's about it.... They will order the home care which you should absolutely take even if you think you don't need it, it's another set of hands/eyes coming to your house with ideas and resources and at this point your insurance deductible & max out of pocket is most likely met, so its free.

The coming weeks and months are going to be very busy for you, I would highly suggest an Amazon Prime subscription. Everything you need will mostly likely be cheaper on there anyway, and with prime you get it delivered in 2 days. You will constantly be thinking of things you need and not have time to go to the store... I've linked below the items I found myself needing right away at home.

Adult Cloth Diapers	Drive Medical Folding Steel Bedside Commode, Grey	Reusable Portable Male Comfort Fit Advantage Urinal System with Spill Proof Collection Bag	Premium Quality Bed Pad, Quilted, Waterproof, Reusable and Washable , 34
Skil Care Roll Belt Restraint Bed Universal Size Extra Long Straps	Smart Caregiver Bed Alarm and Sensor Pad	Extra Long Bed Rail	Motorola MBP853CONNECT Digital Video Baby Monitor with Wi-Fi Internet Viewing and 3.5 Inch Diagonal
Apex 7-day Mediplanner Pill Organizer	AmazonBasics Backpack for Laptops Up To 17-Inch	Apple iPad Air 2 MH0W2LL/A 10-Inch 16GB HDD Tablet, Gold	Sams Club

InLinkz.com

Cloth Diapers
If you're loved one is incontinent I highly suggest cloth diapers, particularly for night time. In the beginning my dad would wake up constantly wet through-out the night, which meant I got not sleep. When I switched from disposables to cloth, he started sleeping through the night. Cloth Diapers are made in a way that the skin touching layer dries quickly so you don't feel wet. There are many kinds available on Amazon and they are super absorbent. Plus, disposable diapers are very expensive! These pay for themselves.

Toileting Aids
You're going to need a bedside commode, not necessarily for bedside, but it makes it much easier for getting on and off the toilet due to the hand rails, they do have simple toilet hand rails, but I find the ability to have a commode that you can adjust the height on depending on the level of difficulty getting up and down more comforting. For men, if you want something at bedside I would suggest a urinal system with bag vs the little urinal bottles you can get at the drug store.It's just more convenient.

Bed Pads
Don't waste time/money with disposable bed pads, if nighttime incontinence is involved, just get the washable reusable bed pads. Unless your loved one is prone to breakdown and bed sores these are not a good option.

Bed Restraints
I made the mistake of assuming a bed rail and bed alarm would be enough to prevent a fall, but it only took 1 trip to the ER due to a caregiver not getting there in time for me to make the decision that a bed restraint was necessary. The SkilCare RollBelt I purchased is something he can't very easily get out of, but can still roll around in bed. If you're loved on is a fall risk, I would suggest just doing it right away. My dads first/only fall out of bed and onto a dresser missed his corotid artery by only centimeters. 

Baby Monitors
When we first got home, I purchased only a regular old baby monitor with the plan of only needing this when he's asleep. I soon after purchased a video baby monitor so that I could be in another room while still being able to make sure he isn't getting up and going to fall. I suggest digital audio sound monitors and after trying several video monitors landed on the Motorola MBP853, while it has many flaws it was the only with all the features I wanted.

"Diaper Bag"
It only took one poop accident in public for me to realize I was not at all prepared for this new life, the next day I began carrying a backpack with all the things we could potentially need whilst out and about. Diapers, Wet Ones, Kleenex, Magazines to keep him occupied, Etc. Etc. Etc.... 

Pill Organizer
Recovering from a stroke, especially a severe one, there are mostly likely a lot of pills involved. My dad has has about 22 things to swallow a day (mostly vitamins) and making him to that all in one shebang is cruel so I got a 4x day pill organizer.

Warehouse Membership
Warehouse Shopping has been a lifesafe, I can go out once a month and get almost everything we need. Especially groceries. Our local Sams Club has so many options for fully cooked and prepared food I can a months worth of meals out of one trip to the club with very little effort. Click Here to sign up and get a $10 gift card!

Ipad
This is a pricey one, but if your loved one needs serious cognitive rehabilitation I would highly, HIGHLY, suggest an ipad. There are a plethora of apps available. What they get in rehab is never going to be enough. You have to supplement at home and handing them an ipad with pre-made exercises takes a lot of stress off of you.

Choosing a Rehab for Stroke

Inpatient vs SubAcute
The first most confusing thing I had to deal with inpatient vs subacute rehab. All I understood was that inpatient rehab was going to be 1-2 weeks and subacute would be nearly a month, naturally I thought longer = better. But inpatient was more high intense therapy and in an actual hospital type setting. I didn't feel like 1-2 weeks was enough... So at first I chose subacute. After touring these facilities and realizing they had no way of dealing with my dad who was a major fall risk, had no idea he couldn't walk so he tried to get up constantly, I ended up switching to inpatient.

I was told be secret sources to remain unnamed to do inpatient for as long as possible, then when they start talking about discharge, freak out about having to take him home and they can suggest he continue on to subacute rehab. They said 9 times out of 10 it works....

I didn't end up having the play that card because after a week and a half in inpatient (plus a week of the flu while there) it was decided my dad needed much more therapy then they would be able to accomplish in the 1-2 weeks insurance would give them, and they suggested I take him to subacute.

THERE ARE MANY DIFFERENT INPATIENT OPTIONS
I went with the inpatient rehab with-in the hospital system that my dad was in. This was most likely my biggest mistake through this whole ordeal. I just thought that's how it worked. Months and Months later I found out about a state of the art top of the line neurological inpatient rehab that probably would've made my dads recovery go much quicker. I kick myself in the ass on a daily basis for this. Make sure you look for a stroke/neurological/brain injury specific rehab. All rehabs are NOT the same!
Michigan Residents, please look into Rehabilitation Institute of Michigan.

SUB-ACUTE REHAB
Sub acute rehab is basically a nursing home that has rehab in it. There are nurses and CNAs on staff, about 1 to every 10 patients. The problem with my dad and these kind of places is while in inpatient they have measures in place similar to a hospital to "restrain" a patient - Nursing Homes do not. My dad, not knowing he had a stroke and was disabled, therefore was turned down from all of my top 3 choices because they "didn't have the staff to handle him" - In other words he was a liability. I even told them I would have someone with him 24/7, still a no. So I had to settle for a sub-par facility. While we were there I thought it was well enough, I don't know what rehab is supposed to be like, once we got out and got into home therapy / outpatient therapy I learned the entire month we spent in sub-actute was a complete waste of time. I'm sure this isn't true of all facilities, but this place was set up more for people who've had hip surgery or something of the like - They were not at all equip for neurological problems.  BUT - We didn't have any other options and sometimes I guess that's how the chips fall.
Michigan Residents: Heartland is where we went and I would not wish them on my worst enemy.

HOME THERAPY
Upon being discharged from rehab, assuming additional rehabilitation is needed, the doctors will then put you into the care of a home care company. Like before, you can shop around, you don't have to go with who they suggest as they are most likely getting paid to refer you to their "preferred" company. Fortunately, this is where my years caring for my aunt finally were useful, and we already had a home care company in place for her, so I went with them. We did 5 weeks of 2x a week in-home speech, physical, and occupational therapy. I learned a lot from this, and this is when my dad finally started progressing.
Michigan Residents, Michigan Community VNA is the company we used and I highly recommend them. They also have outstanding hospice services should you need them.

OUTPATIENT THERAPY
When home therapy is over, you still most likely have insurance benefits for outpatient therapy. Again, Shop around. Find a neurological specific outpatient center. The top of the line inpatient rehab I had mentioned earlier also had outpatient programs, which is where we enrolled as soon as possible (there could be a waiting list, call ahead and get on it when you know about when you will be discharged from the previous therapy).
Michigan Residents, Rehabilitation Institute of Michigan has several outpatient locations and I highly recommend them. They're therapists have training above and beyond the normal scope. They are highly resourceful and have helped me with A LOT through-out this process


Know that if you get into a facility or program that you don't like, you CAN change to a different place. 

Navagating the Hospital System

My dad was in 3 different hospitals, the first because it was closest to his house where paramedics insisted he go, the 2nd his hospital of choice where I had him transferred, and the 3rd where he was suppose to have inpatient rehab, but ended up getting the flu and being hospitalized for that....

I had complaints daily, and big plans to write all these elaborate letters to those in charge. I never did write those letters and have long since forgotten half the things that pissed me off. The bottom line is, nothing is every going to be good enough, fast enough, or well delivered because you're most likely in shock with a side of denial and still have no idea what the hell is going on. But a few lessons from my temporary residency...

Doctors Aren't Fast
And bitching about it wont really do anything except stress you out more...They round when they round and it's not the same everyday.

Nurses are your Lifeline
Fortunately your nurses are pretty consistently the same few. Personally, I find them much smarter than doctors. They are in the field. If you need something, they are the ones that are going to get it for you. You're going to want to and probably will lash out at them, because they're on the front lines. And they are used to it, and can take it. But when you need the good coffee at 4 am after 4 nights of no sleep, being their friend pays off....

No One's Going to Tell You What you Want to Hear
The opposite quite frankly. When it's a stroke you're going to hear a lot of  "I don't know"s and "Only Time will Tell"s. And the truth is they really are clueless. It could be because everyone recovers different or it could be because the docs in hospital rarely see the patients after they're in rehab/home, I don't know - But no one would give us a straight answer on if/when/how my dad would improve. It's best this way, them not telling you, if they do- Just know they probably are full of shit.
One of the many neurologists my dad saw flat out told me this is probably how he's going to be the rest of his life. He happens to be the same neurologist we ended up with as his follow up doc. I enjoyed the look on his face when he saw my dad for the first time post hospital, stunned that he looked nearly normal (he wasn't, but was 100% better than he expected).

"Fall Risks"
First, Bed alarms don't work. Hospitals are understaffed and they will not get to your loved on in time if they are bound and determined to get out of that bed. My dad "escaped" a few times. I had slept in the hospital every night until the night I got the flu. I stayed away for 48 hours so as to not give him the flu (which didn't work) and the first night he managed to get out of bed. They got to him before any falling happened fortunately, the 2nd time wasn't so lucky. He wanted to get up so they got him up into a wheelchair with a chair alarm and put him at the nurses station. She walked away for 1 second and up - down he went. Smacked his face straight into the floor, cut his eye up pretty good and delayed rehab even longer....  The best solution we came up with for when I couldn't sleep there was keeping the foot of bed high so that it wasn't so easy for him to wiggle out in his weak state, and line chairs up around the bed that would be in his way.

Don't Allow Restraints
While it seem convenient at the time, we were turned down by our top 3 rehab choices because restraints had to be used in the hospital (it goes in their chart) and ended up with a sub par piece of junk rehab which I do believe delayed my dads "recovery" significantly. If you can find a way to manage them without restraints, do it. Even the stupid mits to stop them from pulling out feeding tubes count as restraints....Having a hospital "sitter" come in to watch them counts as a restraint. No joke...

Social Workers are of No HelpUnless I just got really bad ones (had 3) I don't know what their function is.... I was told they would help me with filing for disability - They didn't know anything about it. Was told they would help me find resources to help with him, they didn't. All they did was push me into making decisions to get him out of the hospital...... The only social worker that has ever been helpful is the one he has in his outpatient rehab facility.

 In some ways - The internet can be your worse nightmare in these situations, but at the same time, it might be your only resource. Never accept one opinion, find out what else is out there.