Feel like I am sliding downhill fast
 

I am 2 years post TBI and have had constant disabling PCS. I lost my business and am on disability. After 1.5 years I finally started to find some ways to live a somewhat normal 'new" life. Well 2 months ago it all fell apart...

My husband had 2 tonic clonic seizures in his sleep, has since lost his ability to drive and has been struggling with med side effects, moods, anxiety, depression and no sleep.

This has all put a huge amount of stress on me, I went from barely driving and doing very limited work around the house and activity with our kids to doing it all. I am now not only doing everything around the house (well more like failing at it), driving the kids to all of their activities and driving him for his job.

I don't get any downtime to rest and recuperate, if I am lucky I might get to lay down for 1 hour a couple times a week. I have still been going to bed early, but am not sleeping well at all so I am never refreshed. I have very limited help or support.

I feel as bad as I did in the first really difficult months, and in some cases worse. I am a basket case, my moods are all over the place. The littlest thing can cause me to fly off the handle. As each week goes by I am struggling more and more.

How old are your boys?

When I had my severe RSI, my kids had to start doing their own laundry, daughter was 9 and she was youngest.
But kids wore mostly jeans, t shirts so simple & no ironing at all..

I had to streamline the household chores, major clutter reduction so less dusting & misc cleaning..
easy meals and lots of casseroles w/ leftovers.. crockpot meals etc..

Why aren't the kids helping out ?

Maybe they need to contribute to get the privilege of after school activities ?

Our kids were doing all of their own laundry by 8 years old.

They are 8 and 10, they try to help the best that they can. We eat a lot of takeout and easy crap. I use to be such an amazing cook and loved cooking (before TBI) and now the idea of putting chicken fingers and fries in the oven is too overwhelming for me. I've learned to ignore that my house is a mess and that dishes need to be done.

I think the biggest problem is that I get almost no downtime to rest, and the stress and lack of sleep is making me an emotional wreck.

I got so sick of burger joints and frozen food... but for awhile I couldn't even stir to cook ground beef or spaghetti. Much less stir fry or more complicated foods.

grocery shopping was hit and miss and not much planning for meals at all..:(

I was so happy when my arms got well enough to actually cook again..

We did have a lot of home made sub sandwiches/roll ups, as long as the buns, breads and fixings were in the house.. at least a bit healthier than take out.

They are, although there is a lot that they can't do. My 8 year old likes to cook, but requires help and lately my brain doesn't even want to work to help her. Lots of meals are cereal or peanut butter and jam sandwiches!

Oh I totally understand this. So often a big part of the problem is that we don't have the proper groceries and since I am the only one who can drive to the store I am the one that has to do it.

I never thought that spending ½ to ⅔ of my waking hours driving would be so exhausting, that it hits a point in the day that doing any type of errand is too much.

I definitely understand same here husband had 2 operations back to back has vascular dementia. I would get angry cuz I do it all too. but why make myself sicker have neuropathy asthma and diabetes. I just pulled my self up by the boot straps and readjusted my attitude.

Hi Knockedoutmom,

Wow. That's a lot of activity and a lot of stress on you. :hug:

Since you are certified as "medically disabled," I am wondering if you can get some help from the Visiting Nurses? In my area, the VNA has some aides available to help with shopping, cooking, cleaning when someone is disabled and their doctor verifies the need for assistance. The VNA visits the home and does an evaluation of needs, as well. They then tell you what they can offer to assist you/your family.

Do you have any extended family in the area?
Do you have social contacts with a club or a church, etc.

Often, even if you are not active in a nearby church, once they know your family's needs, they try to help in various ways.

I am medically disabled and cannot do the things I used to do.
I used to enjoy cooking. My husband and I often spend Sunday afternoons together in the kitchen, preparing food for the week. We cut up lots of fresh veggies. We might cut up a huge watermelon. We cook some protein. We might also hard boil some eggs. We usually cook a crockpot meal or two while we are busy in the kitchen with other tasks.

When we are done cutting up veggies, we have a huge salad buffet ready for the week. Lots of celery sticks and carrot sticks, too.

We cook again, mid-week. Usually just additional protein and/or another crockpot meal, or roasting veggies in the oven.

Sometimes, we cook a double batch of something in the crockpot, or otherwise, and freeze the extra. The extra is ready for use whenever we need it.

With a crock pot, I can start a meal in the morning and it is ready for dinner.
I have more energy in the mornings to cook, I am often too wiped out by dinnertime to cook; heating foods is easier than starting from scratch at that time of the day. I do most of any food prep in the mornings.

I realize it's more demanding with children to feed. I don't mean to minimize your work load. :hug:

Often, doing things, like adding sliced apple to the peanut butter sandwiches helps get some extra nutrients and children often love peanut butter and apple sandwiches, or peanut butter on apple slices/celery sticks. Maybe celery and carrots with hummus?

Can hubby help in the kitchen? With laundry?
Is there any option of carpooling, so you drive less frequently?

My heart goes out to you. :hug:

DejaVu

Are there any grocery stores in your area that deliver? Can you do online shopping? This could save you some driving time.

I was going to suggest the same thing... my wife works full time and once she understood that doing the groceries was and remains way too much for me, we started doing them online... we either order them and pick them up on our schedule or have them delivered.

Since doing this we tend to have more and better food in the house, though we also grab fast food as there are days when everything is just too much.

Hang in there!

Could you make a designated time, let's say an hour, during the day when you could lay down and rest/sleep? Let's say 1:15 to 2:15. Everyone knows not to bother you with anything. Except of course the house was on fire. :winky: I know kids will be going back to school soon, that should help. :wink:

I used delivery service and I had two slow cookers. In the morning I would throw chicken of beef with carrots and onions in it and leave if all day doing it'd thing. I also did the potatoes in the mornings. I bought chopped vegs most of the time from the veg section. Although for really dead days I would use a bag of frozen chopped stew veg and throw in frozen beef chunks with water and a stock cube.

Wraps are great for snacks, get ready to go salad and sliced meats, easy and quick and healthy. It's important you get some real healthy food in you to help you have the energy to get through the day.

Fruit like apples, bananas and pears take no prep. Great for snacking and filling up.

By evening when I was wiped completely the dinner was done. Hubby can watch the potatoes and serve up. Not too much to ask.
Take regular naps of 90 mins. You get proper rest that way. Come home from dropping hubby and kids, nap. Prepare evening meal and your lunch, have a cuppa and a nap. Eat lunch wash pots have a nap. Chuck some washing in the machine. Quick tidy round, get kids. Give fruit snacks and juice. Sit and rest.
Go get hubby. Hubby does tea. Kids can sort their school stuff, you rest.
Eat evening meal. Kids go to their rooms to get ready for bed whilst you and hubby rest. Tuck them up in bed, hubby can get stuff together for tomorrow's crock pot in the fridge. Rest together before bed.
I know it's hard I've been there too. The kids will have to restrict after school stuff unless you can get them lifts.
Have a 2 hour family clean up at weekends.
You are not Wonder Woman.
You could make up a daily timetable, everyone knows what is happening when. You can protect your down time then.
It does seem overwhelming to think of planning but believe me it saved me from total melt down, probably saved my relationship too.
If you can afford it then pay a cleaner. I use £18 a week for two hours cleaning. It's been a godsend.
Good luck.

I'm very sorry it's so overwhelming for you right now.

Everyone has offered great ideas.

Get your groceries delivered to start with. Saves all that time, driving and over stimulation too. I did it for a while myself. Once you've done it once, you'll find it easier to do the next time plus you can usually make a master list on the online site, so that the next time isn't so complicated.

Respite. Look for Brain Injury Associations in your area. There are many in Canada. A lot of them (if not most) would offer respite services.

There sometimes comes a time when you need help even though it's really difficult to ask for help.

Thank you everyone for your suggestions. I am so glad I have you all who understand!

I am on a waiting list for our local brain injury services, although it has been a year and they are saying 3-6 months more. It really sucks that no money means no help, we are the ones who need it the most.

I am going to look into the grocery delivery, even if it costs a little more, as you say it is one less thing for me to worry about.

As far as his work, unfortunately carpooling is not and option, he is a territory sales guy so his job is to drive for a living.

I think you do need to parse in time for rest periods. There hasn't been any in your plan so far, has there? Everyone in the house should know this and respect those times for you NOT to be bothered with anything. I think 3 rest periods are in order. Just wind down what your doing and start to consider them part of your day. You certainly can put some things on the back burner and move yourself up to the front burner. It's important, you're important!! :winky: