2022

 This is a year of many changes.  Not too many good ones, unfortunately!  Even though Ken has had troubles with mobility for the last few years, he was still been able to get around.   This year that was slowly taken away.   Along with trips to Kennestone for his appointments and vacations and anywhere he could go in a car.  By May, he was unable to make pivots anymore and soon after that he was unable to even stand anymore, officially becoming bed bound.  Thanks to the Drive patient lift we got through insurance (because I asked the Dr if they prescribe them), I'm still able to get him up, but not without difficulty.  Ken also started sleeping more and more.  But all his MRIs show a "stable" scan---no tumor growth,  Wallerian degeneration of the right cortical spinal tract has developed; postoperative chronic hemorrhagic products and laminar necrosis; diffuse symmetric cerebral cortical volume loss/atrophy to a moderate to severe degree; and centrum semiovale white matter in keeping with chronic microvascular ischemic changes.   So it's these "other" things that seem to be causing havoc on his brain now and causing problems with his left side motor skills and causing dementia.  Short term memory has greatly deteriorated over the year.  Fortunately Alexa doesn't mind answering his questions about the weather and date over and over again.  Then there's the constant harrassment of me on a more personal level.  There's also learning how to change bedding with someone in it, how to clean up after BMs in bed and trying to keep them regular.   Never in a million years would I have chosen this profession, but somehow it chose me.  I read about GBM patients living on average 1 year and becoming bed bound for the last month or so.  I am thankful that I have more time with him, but I also feel my life slipping away.  It's been a hard year!

By January, he was already spending more and more time in bed.  So I went out and got a new Roku for the bedroom tv and set it up.

1-2022  Time to get hooked up with Roku!!!!  Still have cable, but nice checking out streaming.  Finally dropped cable a few months later when we had a dispute about the cost.  Haven't regretted dropping it!

 

1-3-22 SNOW

 

1-6-22 heading back to Kennestone to restart Avastin after a 2 month break to get a tooth extraction

1-11-22 to our local firestation to drop off thank you snacks that we picked up from Costco for the lift assists they performed on Ken

1-12-22 burning piles and piles of debris from our wooded lot---including, what I found out later to be, poison ivy vines!

1-16-22 more snow---pretty snow (heavy and melted right away)

1-17-22 MRI at Wellstar Acworth  Every 3 months he continued to get MRIs

1-27-22 2nd bought with poison ivy-- after burning what I didn't know was poison ivy

I pulled a lot of these vines off the trees!!!  Had no idea it was poison ivy.  Cut them into chunks to burn and burned them.  Not a good idea!

1-28-22 Ken soundly sleeping through his 70th birthday dinner

1-28-22 awake for cake!

1-29-22 dinner at the Great Big Chicken restaurant

1-30-22 Bill and Tim doing the Green Man dance

1-30-22 Tim with Ken's fire safety film---Tim found it in some of the stuff he had from Graybrooke

1-31-22 visit with Bill LaBeaume and clan

2-16-22 finally got my new c-pap machine after being ordered last Aug.

Time for another big change---Ken not being able to pivot into his chair.  So I had to learn how to use the Hoyer lift.  Seems pretty straight forward, but it caused a bunch of problems right from the start.  First the sling they supplied was so small it wouldn't fit Ken.  1st time I used the lift I had to lift him off the floor with the too small sling.  Took about an hour to figure that out and just barely got him up.  Went and ordered 3 more slings after that.  After 5 or 6 more lifts from the floor in the next 5 or 6 months, I got pretty proficient at it.  But the lift still didn't clear him of the top of the wheelchair seat so it was always a challenge getting him in far enough.  Plus pieces of the lift broke off and Tim found other pieces that were loose.  I fought for months to get a new one.  They finally brought one out, but the wheels were semi locked so I told them to take it back.  Months later, the lift started loosing it's staying power when I had him lifted so they brought another new lift out----that time it was good.   I often thought Mom would have benefited from having one of these, but I understand she had a big fear of falling.

2-17-22 finally using the Hoyer lift after Ken fell in the bathroom a day or 2 before.

2-18-22 Ken in a hospital bed now since the lift won't raise him into our bed.

The Knox kids still managed to make it down every 2 or 3 weeks for a couple days.  It's been great seeing them more now then we did when we only lived a couple miles from each other.  And I'm loving using the dining room table so much now.  When we got the house, I thought the dining room was a waste of space like it was in St. Louis.  But it's been well used here.

2-19-22 dinner with the kids

2-19-22 knox kids and Layla   Angie and Josh even asked them to be her legal guardian if anything ever happened to them and they without hesitation agreed

Between Micky digging up chipmunk holes and all the friggin' chipmunks, they were driving me mad.  Don't like that they can do so much damage to our pool deck.  So I bought a Chipmunkanator and became quite the trapper.  Ended up catching around 18 Chipmunk and relocating them.

2-23-22 1st of over a dozen chipmunks caught in our back yard

We were excited to be able to go out to dinner again like pre-covid.  Unfortunately, that didn't last too long before Ken couldn't transfer to the car anymore.

2-24-22 prime rib at Rodney's thanks to gift certificates from Rick and Sue, and the Fischers.

2-26-22 Johnny's pizza outing---unfortunately, I think this was our last meal out.  He fell getting into the car after leaving the restaurant and we needed another lift assist--the last one.

2-27-22 playing Memory with Layla

3-1-22  Start of Palliative care with Wellstar and NaToya

Don't know if it's the falls, or what, but his knee keeps giving him more and more trouble.  So to have it checked out, I had to call for an ambulance and go to the ER since he can't pivot anymore.

3-2-22 ken to ER because of his knee

3-2-22  xrays done--nothing wrong--go see your orthopedic Dr. (how?!)

3-7-22 wasn't sure he was going to make it into the car with his bum knee, but he did---off to his infusion

Still enjoying the many visits with Layla

3-7-22 Grandpa and his best bud

Still enjoying his time in the recliner---put there with the Hoyer lift

3-11-22 sweet

3-12-22 st patty's dinner

3-12-22 more snow!  Last year I think I was in the pool on 3-11!

Mr and Ms Pringle

3-12-22 st patty's ruebens---when Ken was still able to join us at the table

3-12-22 bffs

3-12-22 Ken in the spirit

3-16-22 Rick and Sue for a visit

3-23-22 OT (Kate) 1st visit---ultimately she got Ken the power wheel chair

3-21-22 time to shock the pool--and my wallet

Pool had turned green almost over night.  So figured it was time for chemicals

3-21-22 chemicals in, now to wait a week or so for water to clear.

3-29-22 PT with Travis

3-30-22 1st cool dip int he pool for this year

3-30-22 pool pretty clear

4-2-22 checking on drooping garage ceiling

4-2-22 hamburgers and Highlifes weekend and Dolly coconut cake!

4-2-22 best buds, again

4-2-22 reading to Layla

When it became clear that Ken wasn't able to pivot anymore, I called Dr. Klass to see if Ken could get his infusions at Paulding Wellstar since Tim found out and told me that we have a free senior transit service in Paulding County.  She said sure, but we'd have to change Drs.  So I contacted the transit people and sent in the registration papers and we changed Drs.  They say be ready for the transit 1 1/2 hour before your appointment, and often we have to wait an hour to be picked up afterwards, but they've always come---eventually.  And the drivers have been very nice.  Did have a few discussions with the scheduler, but got that worked out.  I have to reserve the bus a month in advance---so the Dr's office works around that.

4-4-22 now taking Paulding transit to his infusions so switched Drs to Dr. Kefela at Paulding Hospital

4-4-22 our almost always private transportation!

4-6-22 hummers are back

4-6-22 Layla found one of the kids cowboy hats from long ago

4-8-22 PT with Rhonda from Pruitt Health---come on mr. Labeaume, just do it.

4-11-22 new haircut

4-13-22 waiting for MRI at Paulding hospital---and waiting, and waiting, and waiting

4-14-22 azaleas blooming, amaryllis starting

4-14-22 Layla watering the weeds

4-15-22 coloring eggs

4-16-22 Layla and the Easter bunny

4-16-22 more pool time

4-17-22 Easter

4-21-22 new Calydescope bushes planted---transplanted the bushes so many times that I think some of them finally died, but I'm hoping the calydescope ones and maple trees survive.

4-23-22 irises blooming

4-23-22 pool party

4-23-22 cheers

4-23-22 Tim's home made cheese cake---yumm

4-24-22

4-24-22 Layla masterpiece

4-26-22 ac getting a new capacitor for the AC

4-27-22 Layla at her school concert--she's still so shy she ran off the stage to Mom and Dad.

4-28-22 showing off Grandpa's hat

4-28-22 how Ken spends most of his time in the wheel chair now

5-8-22 Mother's Day

5-8-22 Mother's day

5-11-22 A-Day, poor little Layla wasn't feeling good.

5-13-22 copperhead came to visit

5-15-22 Bill visiting

my 66 birthday cookie courtesy of Bill and Lena

5-17-22 dead armadillo in the pool

5-19-22 Power Chair Supply rep, Kelli, helping GP, Glenda, get the paperwork for the power chair submitted to the insurance company---from start to finish, meeting with OT, then Kelli and Fernando (the reps), then the PA to get the paperwork done for insurance, waiting on insurance, waiting on the supplier---took about 4 months from start to finish.  I had wondered if it would be sensible to go through with it, but the tilt has become invaluable for getting him situated in a chair.  Without it he wouldn't be getting up at all.

5-20-22 birthday feast of toasted ravs and penne pasta

5-20-22 and delicious pineapple/coolwhip birthday cake

5-20-22 and cool birthday presents

5-21-22 Grandpa's hooked

In order to stay in the pool an extra 5 minutes, Layla finally jumped in.  There was no stopping her after that!

5-21-22 1st time Layla jumped into the pool

5-21-22 hanging out

5-21-22 cheers

Ken still getting up and visiting with us.  Using the old hoyer lift.

5-22-22 pool party

5-22-22 pool party

5-24-22  I voted

6-12-22 Ken asked for a new Facebook photo--but he quit using his phone and never even uploaded it.

6-3-22 Paulding hospital for Dr appt and infusions---about 4 miles from home.  After 2 years at Kennestone and hours of waiting there, Paulding hospital is a nice change.  Seldom do we wait here (except for MRIs and the bus).

Still getting PT.  Looked like they might be able to get him to pivot, but it didn't happen.

6-7-22 PT with Travis and Henry

6-10-22 happy birthday to the in-law kids---both have birthdays this week.

6-11-22 Kids putting together my 2nd Costco rocker

6-11-22 fearless swimmer

6-11-22 Layla swimming in deep water, too

COVID---it finally hit us!  Me first.  But I had it very mildly---little achy, little congested, no fever.

I have covid!!!!  And Josh and Angie do, too, in the next week or 2.  Ken never got it!

6-20-22 our 47th anniversary

6-29-22

6-30-22 Tim Buerhle down for a visit

7-2-22 Kids showing me how to use my new phone after my old one took a dive into the pool

7-4-22

7-8-22 Power chair finally here!!  The tilt feature has proved invaluable as he lost more and more of his core muscles.

7-8-22 Micky (dog sitting while the kids are in St. Louis), roaming the neighborhood when he got out when I opened the door for the Palliative nurse.

7-10-22 Bill down for another visit

7-10-22 Bill and Ken

Dang it Wyndham!  I really enjoyed our Platinum status.  But after about 15 years, they corrected their mistake and we are rightfully Gold.  Still not bad.   Nowadays our points would make us Silver, but back when we converted, we were suppose to be Gold.  Fortunately I didn't have to fight them on that.  So other than getting a reservation for 65% of the listed points instead of 50% within 60 and having to wait until 45 days insteadof 60 to get free upgrades, our benefits are pretty much the same.

7-12-22 apparently Grandfathered into Gold now that they've corrected their mistake

VIP priveleges---GOLD

I noticed Wellstar Paulding had a Pinnacle office so made Ken and appointment for his knee and we took Paulding transit to it.  Got a steroid shot and since he's not getting up anymore, that seems to have helped.

7-14-22 Dr. Burris with Pinnacle, Paulding hospital giving ken a steroid shot in the knee

7-15-22 PT discharge day---I'm not sure Rhonda understood what his diagnosis meant.  She often seemed disappointed in him.

7-20-22 advantage of the power chair.  I have to tilt him back and pull him back after getting him into the chair.

7-22-22 weekend with Tim---Faith had other plans

7-22-22

7-24-22 touring Wellstar Kennesaw Mt hospice house with Tim---we were both impressed

7-27-22 waiting for another MRI at Paulding hospital

7-27-22 getting Ken onto table with hoyer lift

7-27-22 one of the MRI pictures.

7-27-22 Rick and Sue for a visit

Figured it was time to teach Layla to snorkel

8-6-22 Layla took to the snorkel gear right away!!!

8-6-22 can't wait to take her snorkeling

8-14-22 bedroom rearranged---figured with Ken in bed for days at a time now, it was time to turn him so he could see outside and the tv.

8-14-22 another visit with all the kids

8-17-22 Ken spending more time in bed and Layla playing with him there

8-21-22 Ken's brothers down together

8-21-22 visit with the brothers

8-21-22 the LaBeaume boys

8-21-22 pub-sub time

8-29-22 infusion room at Paulding hospital

9-10-22 LaBeaume and Hicks kids in town again

Josh and layla helped me with the front flower bed while Angie, Tim and Faith went shopping for pine straw, stepping stones and drainage tubing. 

9-10-22 working on the front flower bed---Josh digging up the bridal bush

9-10-22 Layla planting the ornamental grass along the edge.

9-10-22 pool after gardening

5-10-22 front bed after dividing irises and Amaryllis, moving ornamental grass, and removing the bridal bush, adding stepping stones and pine straw

9-11-22 good bye hugs

9-12-22 waiting for the bus to go to his treatment

9-16-23 helping clean up the front entrance of our subdivision

9-25-23 my best buddies from McCluer North came to visit me

10-1-22  Grandma's Little goofball

10-1-22 My friend, Cheryl, sent layla a present

10-2-22 fun Cardinal season---the end of an era

10-3-22  Angie's 42rd birthday

10-5-22  flu shot for me, then Layla over to visit

10-17-22 Layla looses her 1st and 2nd teeth!

10-10-22 Ken getting Avastin

10-14-22 Octoberfest weekend with the kids

10-15-22 Layla helping with the icing

10-15-22 Ken enjoying the cookie I made him

3-15-22 a walk down the street with Ken and his power chair

10-15-22 the cookie creations

10-15-22 father and son

10-19-22  Covid booster

10-19-22 Layla with my old farm toy

 

10-19 -22  I also got my 4th Covid shot. 

10-25-22 clouds on early voting day

10-27-22 MRI using the Hoyer lift

As with Perry, we move into an established neighborhood and construction starts.  Where the old drag strip had been, they're going to put over 300 new homes.  It doesn't actually affect our back yard, but the rest of Lakeshire to the corner has been cleared right up to the back yards.  The woods that everyone there had are gone and they will have neighbors quite close.  But also like in Perry, the construction ends right before it gets to our back yard. 

10-20-22 land behind our street being cleared

Another Halloween

10-31-22 Layla not afraid to get her hands dirty cleaning out a pumpkin

10-31-22  I thought Ken would enjoy seeing the trick or treaters, so I got him up and outside, but he didn't last very long.  Went back to bed before any trick or treaters even came.

11-12-22 putting Tim to work changing fire alarms and shoring up the fence outside

11-13-22  Visiting in the bedroom with Ken

11-21-22 Avastin treatment #47

11-22-22 me to my electrophysiologist, Dr. Piedad

Thanksgiving weekend with the kids

11-23-22 Layla showing Tim how to color

11-23-22 visiting 

Thanksgiving 2022---Nov. 24

11-24-22 our menu card

11-24-22 Ken joining us---rarely does that anymore

11-24-22 resting

11-24-22 family photo time

11-24-22 our little turkey

11-25-22 xmas decorations going up!

11-25-22 new air filter going on (not without a lot of complaining).

11-25-22 Angie's maiden use of her outdoor wood burning pizza oven

11-25-22 sunset shenanigans

11-26-22 their departure photo

Layla's 5th birthday!!!!

11-29-22 the kids actually invited me to go to Totopos with them to celebrate Layla's birthday

11-29-22 then we came back to the house so Layla could open more presents

11-29-22  and eat birthday bundt cake

12-5-22 Avastin infusion #48

12-16-22 Tim's Daggum birthday hat present

12-16-22 Layla with tim's hat

12-17-22 xmas at our house with all the kids

12-17-22 Tim helping ken open his present

12-17-22 making canollis

12-18-22 our kids

12-18-22 our other kid

12-18-22  Me and my buddy

12-19-22 Taurus new battery , new brakes, new calipers---$1,136.37

12-19-22 another infusion

12-23-22 COLD!!!!  hovering around 0 for the week

12-23-22---new patient lift---FINALLY!!!

Christmas 2022

12-25-22 duet

12-25-22  Santa's reindeer

12-28-22  Covid 2.0  Ken's insurance company sent out $500 debit cards to help out with food and bills.  By the time I realized we didn't have it, it was nearing the expiration date for the deal.  So many calls, many promises, lots of frustration, it finally arrived.  Used it to pay the gas bill and internet bills for the next few months (paid forward)

12-28-22

And that ends another year!!!  Not the greatest, not the worst.  Lots of changes---especially dealing with Ken.  But he's still here and doing reasonably well for the circumstances.  Lots of trying times and lots of exhaustion.