Caring Today Community -

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• My Story

Where to begin, my husband (AL) and I have been married for 9 years, tommorrow, in these last nine years he has been hospitalized for many reasons. Cardiac by-pass, angioplasties with stents implanted, 2 cervical neck surgeries, both shoulders have had work on, and both wrists have had carpul tunnel surgery on. SInce May 2007 he's had influenza type A, his 3rd cervical neck surgery, last rotator cuff repair, 3 strokes, post concussive syndrome, situational depression, parkinson's symptoms, memory loss, anxiety/panic attacks, bronchiolitis, and many more.

He has 2 children through a prior marriage they are married and have blessed us with grandchildren, I have a 15 year old son (RW) from a prior marriage who is a runner, musician, writer, and brianiac. Together we have a son (MR) who will be 8 in 5 days, who is extremely sensitive and with all going on who can blame him.

AL isn't quite 55 yet, and I'm still appraoching 40 but not there yet. Its been 2 years since AL has been able to work, drive, wake up at a regular time on a daily basis, etc, and looking at all the medical history its a no wonder why.

I manager a store in a tourist town so have long hours and during peak periods not many days off. I recieve many calls ot home as due to the economic times my company decided I didn't need an assistant manager anymore, even with all that is going on in my personal life.

I am also my spouses main caregiver, when I am not working, our family helps out as much as possible.

My parents had moved in with us as they could not afford to heat their home over the winter months with the fuel costs as high as they were and we live half way between my dad's work place and their home (we're still a 30 minute commute though). They helped give Scott a reason to wake up when our boys were at school and I was at work and motivate him to keep moving by playing wii games with him in the mid-day.

We have many medical expenses that we haven't been able to pay fully on (but are very slowly chipping them down) as they were worker's comp and due to AL suffering strokes 10 months later they have all been denied and our appeals unheard. Our private insurance refuses to pay due to they were workers comp and now its been over a year. We looked into selling our home...but due to the current economic situation it isn't worth the mortgae anymore and no one is willing to help us withthe difference as we have the unpaid medical bills out there that of a significant amount. Each month we are geting a little farther behind than the last and I am afraid we will lose our home instead of selling it. Our mortgage company knows of our situation and while they aren't being flexible and working with us they are personable when they call for their payments.....(we haven't missed one yet but they are sometimes pushing the grace period).

The more I learn about support for caregivers and different programs the more I feel abandoned as there aren't ANY in our area for situations such as ours. Even this site and the magazine is more geared to caregiving to seniors. I even looked into a 50+ apartment complex that has emergency pull strings in the apartments but no children allowed to live but visiting is okay(and some complexes had 3 bedrooms).

Did I mention we have a 15 and 8 year old sons living with us, the schools aren't prepared for this type of situation either. Most of the teachers on a one-on-one basis are great, but the office....they just care about the number of students not how they are doing. Both my boys have been tought how to get dad out of his anxiety attacks by themselves and what they need to do if they find him passed out on the floor. The importance of this shocked some, but int he past 3 weeks both of our boys have had to put these skills to works and did so perfectly and calmly.

Last fall RW was assisting AL walk to the house from our backyard firepit when we believe AL had a TIA. RW slowly set AL on the ground and stepped away while I ran to assist. MR took over watching our fire to ensure it stayed in the pit, RW quickly grabbed the walker AL tried walking without and as AL slowly became alert again we helped him get back onto his feet using his walker to support himself as we anchored it down. The next day AL was extremely demeaning to the boys as we prepared to leave for school so as I dropped off each boy I spent time talking with them and ensuring they were aware I was proud of how well they handled the night before and this morning after. Hence RW was late getting into the school building, when I signed him in the attendance secretary rudely asked why I didn't I just have him ride the bus so he'd be to school on time. Like that would have helped him have a better day?

WHAT DOES A TYPICAL DAY OF MY LIFE LOOK LIKE?
*Wake up at 650am
*Wake boys up at 7am
*wake AL up at 715am
*everyone eat and out the door by 735am (except for AL)
*drop RW off at high school
*drop MR off at elmentary school
*go to work by 815 (during the day make and recieve many calls from AL to ensure his day is ok, meds taken, not doing to much) *MR rides bus home
*RW has track practice or stays in bandroom for help
*I get off work around 530 to 630pm get RW head home
*fix supper as AL hates to cook
*help MR with any math homework he might have
*go through mail, email, facebook
*on Wednesday out the door by 545 to go to AWANA
*bedtime for me is 11pm

so are you wondering who does the daily tasks? AL's TYICAL DAY *wake up at 715am
*do dishes (even when we do the dishes, he'll redo them)
*eat and take meds
*say goodbye to everyone
*do neubulizer
*go back to sleep or read
*if my parents are here at 1030am play wii, if not pace house or sleep
*maybe eat lunch or throw in laundry
*check basement for water
*lay down by 130pm for a nap before MR comes home
*330pm I call to ensure he's awake as MR gets home by 350pm *read with MR and help him with homework
*play wii, walk, or watch movies with MR
*lay back down around 5ish
*get up around 630-7ish for supper with family
*RW does homework
*9pm MR goes to bed AL will go upstairs with him
*10pm talk with RW after his homework is done and maybe play a game or watch a show with him
*11pm bedtime

Well, that's my story, in a general way.