Today is my flex day.  I will spend the day mowing the yard, vacuuming, getting groceries, fixing meals, going to a medical appointment and a have a consult with an elder attorney.

For approximately 6 months I have been working 4 days a week, 10 hours.  Since another person on my team had Fridays off, that was not available to me.  I power through Mondays, so I did not want Mondays.  So I picked Wednesdays for a mid week break.  It has been working for me so far.  I can power through Monday and Tuesday and get a day to breath and take care of household stuff Wednesdays, errands, shopping.  We found out this week at work, that our 4 day flex weeks might be taken away now.  If there is one thing that is a constant in corporate, especially claims, is change.  About the time I work hard on something and develop a system and learn it, it changes. 

I am so glad I have gone through 2 downsizes already.  And I remain ever grateful that I am able to 100% work remote.  About the time DH and I moved from the city (downsize #1) and he retired, came the pandemic and virtual work.  I have been working remotely from home since 2020.  We moved from the city and DH retired at the end of 2018.  For a year I commuted 3 hours back the city on Mondays and came home Thursday nights.  I stayed during the week with my aunt and uncle.  Then in 2020 I got another gig, a temporary job.  Then eventually in 2021 I got this full time job with a large insurance company.  Last year we sold our larger country home and moved to this smaller house in a neighborhood with a smaller yard (downsize #2).  

Now that we are in this health challenge for DH, I am so thankful that I work at home so that I can be with him.  But I am not really with him much during the day, because my job is very demanding and fast paced.  I am going to ask his sister if she can come and spend at least part of a day with him each week.  I cannot believe I have to even ask.  She has not offered any help at all.  Not even a meal.  She lives 8 miles away.  2 weeks ago when I told her the doctors and coming to the possible dementia diagnosis, she said "she would be praying for us and that she WISHED she could help us".  She spent over a year helping her mom in her mom's home with her dementia.  Maybe she has caregiver burnout - who could blame her?  

I cannot quit working right now at the risk of my own financial future.  DH is 13 years older than I.  I am not quite 60 yet, so I have maybe 20-25 years of life that I am saving for.  I am learning that what has happened to DH is not just a stroke, he has possible, quite likely permanent damage that will not only never go away, but will progressively get worse.  Professionals and people that I know with personal experience with dementia tell me that eventually he will need round the clock care.  I do not think I can do that alone.  I know I cannot do it while working.  

DH sister put her parents in skilled nursing just after Christmas last year.  Before that she went to their house at least once a day for over a year to do laundry and provide meals.  DH mom was on hospice for over a year, so there was that resource for help too.  I am learning that in my state, one qualifies for hospice when doctors indicate that person could die within 6 months.  Until hospice, you must pay privately for help, use long term care insurance or qualify for medicaid.  

We did not buy long term care insurance, it was too expensive.  We do not qualify for medicaid.  So I am looking to hire private care.  It will cost $30 - $50 to go through a formal agency.  Individuals will charge $20 and hour.  I am going to call a couple names I have been given by friends to see if I can set something up.  I am going to 25 hours a week for a total of $2000 a month to help me at $20/hour.  This has to come out of my budget.  So far I have turned off cable, stopped all monthly subscriptions except for Netflix and Amazon, I have turned in our backup internet and simplified and cheapened our cell phone plan.  Next I will likely sell one of our vehicles.  I will immediately stop saving any money - this all should help me make up that $2000/month difference.  This will help me get some sleep - that is the main thing I am lacking now affecting me short term, anyway.  And buy us some time. 

More next time, thank you for reading.

 So since June 20 post, DH had a birthday.  He turned 72 Wed.  We had first follow up visit with stroke clinic since his initial stroke/strokes that same day - happy birthday, huh?  Hey, he is still kicking.  I use plural strokes, because 2 sides of his brain showed damage after the event.  I will backtrack...

On May 1st, he had an accident with a handgun.  Was cleaning it, discharged it into his abdomen.  He has an intrathecal pump in his abdomen.  The bullet hit the pump and destroyed its function, but the bullet was prevented from traveling further into his abdomen.  Now the pump does not work.  He had it implanted for severe low back pain.  Due to the complication of the pump being hit/right where the bullet was, the surgeon at ER elected not to remove it.  May 4th, he became disoriented, restless, confused and fell.  Later he displayed left side weakness and that's when I got him to ER for the first stroke/multiple strokes event.  Since then he is either having more strokes/TIAs or seizures.  I will document that eventually...

On May 4 they did CT scan, but could not (never will again be able to) do MRI due to the bullet staying in his abdomen.  He was in hospital 4 days and then rehab hospital 2 more weeks.  He came home May 21st.  At first, he seemed to be doing well.  Went from not being able to use left leg and arm, to walking with a walker.  Then a cane.  Quickly he was walking slowly without the cane.  

Since initial event, he has had a couple of incidents where his blood pressure spikes and he is aphasic, or cannot put words together.  He can say words, they are just in an order that does not make sense.  So back to the hospital on May 26.  They literally just gave him saline and monitored his vitals and repeated CT scan - no new findings.  Sent him home 3 days later - no diagnosis and no follow up with neuro, just PCP (primary care physician).  His blood pressure normalized.  PCP really pushing to be sure his bleeding ulcer is resolved, so we can possibly someday get that bullet operated on.  

So, we had a side track to the gastro, do upper scope, meds for that...yada yada yada.  Now, that seems to have resolved.

Since end of May has done this couple more times being aphasic, the worst one was EARLY Friday and I struggled with taking him back to hospital, but did not because he was so MAD May 26 when I called 911.  REALLY REALLY mad.  

So this last time I agonized over it, because he seemed even worse cognitively, but this time his vitals were all really good!  So, I tended to him best I could and waited it out.  Is it crazy that I was so relieved it happened over the weekend?!  But all I did was change sheets, mop floors, clean him...etc.  I was mentally and physically exhausted.  Back to work for me on Monday.  

At least I work at home.  By late Sunday, he was walking, talking and way less confused.  His vitals remained strong and his blood sugar is doing really well.  I have only given him one insulin shot in the last week!  

The meals, medication, keeping the house clean, caring for the dogs, mowing the yard...I like busy, I like tasks.  Its all the unknown that is really hard for me.  More on that later, wanted to write down the stroke background.  More on the developing situation later.  It's a lot.  

A couple of people asked about help.  We do not have children.  I have a sister who is breadwinner full time working, an hour away and he has 2 brothers 3 hours away and a sister nearby - more on that later.  It is so devastating the lack of empathy, that I am still processing that.  So, no - no help.  I am currently looking to hire help.  Will document that too.  

Have a wonderful 250th birthday to America, if I don't get back here before - stay safe.  

So, 2 years since my last post...so much has happened...  

At my last post I had just gotten my present job.  I was so excited to be back on my career track.  It is a stressful industry, but I had a good run my first 15 years in, so I wanted to get back to it thinking I could probably do 5 - 10 years remote and then either retire, or get a part time job and ease my way into retirement.  

100% virtual learning remotely was a real challenging learning curve, but I kept at it, had a great boss, worked hard/long hours, got more comfortable about 6 months in and was doing fine.  I was even thriving in some ways and getting great performance evaluations.  So thankful for my job, especially being all at home working remotely.

About a year ago, I realized that with all my working and with DH continued health challenges we were ready to downsize again.  So we did.  This time we moved from our acre country home with a huge yard and tons of storage to a new brick home with a little tiny yard.  I will talk about that in a future post, because it was very challenging and strategic and worked out like a charm executed.  I went from a place that was remote and had very little delivery options to a place where I can get more support.

When I am not working, I am usually hiking or kayaking or enjoying my lake condo so I did not want to be tied down to a bunch of yard work.  Looking back hindsight...I am SOOOOOO grateful I had this push telling me this needed to happen, which will become more evident when I explain what happened right after...

So, we have been in our new home for a year and 2 months.  We just really have enjoyed removing the weight of the bigger older home and large yard.  The new house is very light and bright, we have everything unpacked and laid out just the way we liked and would use it and then bam...

At literally one year enjoying our new home, my husband had multiple strokes and was rushed to the hospital.  I will also post more on strokes and caregiving, as I need to work through all that too...It was a very scary experience.

He was in hospital and rehab hospital 3 weeks and home for about a week when he had another stoke.  He was back in the hospital for a few nights then back home.  He is back to walking and can dress himself, but is showing cognitive and memory decline and so no executive function.  That means no driving, no calendar, no financial, can't use his phone except to answer a call and I do all shopping, cooking, cleaning, help him shower and all his medication (and it's a LOT).  With all his conditions, I have had to learn so much.  

I needed to come back here and be able to connect to a community more than ever.  I am already 2 months in and feel very isolated.  I have only left my house in 2 months to visit him in the hospital, shop or go to the pharmacy.  Also I am failing miserably at trying to journal.  I am so busy working full time and doing all the stuff at home - that journaling is the last thing I make time for.  So, this will be outlet for that.  

I want to emphasize that I am so very grateful that I still have my husband for however long I have him.  I am just trying to live in the moment and just be.  I may be looking at early forced retirement - but not today, I may have to sell things or change my financial plans, but not today.  

Just get through today - sometimes an hour at a time.  Pray and know that God has a plan and breathe and try to find beauty in the little things I can, take care of myself so that I can take care of DH.

Thank you for reading.