On Monday, November 27th, my husband, Joe, will have been in his new “home” in the memory care wing of Carmel Health and Living for 4 weeks.
I’m happy and relieved to say…things are going really well.
I’ve had some time now to decompress, take a breath and get reaquainted with my life and home without both Joe and my step dad, Steve, hanging out together in our living room.
Steve was Joe’s official caregiver for 7 months, coming to our home from 8:30 to 4:30, 7 days a week, to be Joe’s “companion” while I worked on being productive in my two businesses as a personal chef and a holisitc wellness advocate.
Over this last week, I was reflecting back on this life experience and the actions I had started to put into place, starting as far back as 2019.
I’m going to share my story because if this dialog of my journey helps just one person, it will be worth this post.
I’m calling it getting your “ducks in a row”…the definition which is “to be well prepared or well organized for something that is going to happen.”
This journey started in May of 2019…
Joe was on his way to Pinehurst, North Carolina, to meet up with his Citadel Class of ’59 buddies for their annual Spring “guys” get together…an occasion they had been doing for years.
Each year, on his way there, Joe would take the time to go to Lynchburg, Virgina, to visit his sister and her family, then spend the night and head out the next morning.
It was on that leg of the trip to Lynchburg that Joe got lost. In his defense, there were major construction detours through the mountains and he doesn’t use GPS…I know…crazy.
He did finally make it to Lynchburg, but I was a nervous wreck at that point and begged him not to continue on to Pinehurst and that I would fly to Lynchburg and we would drive home together.
Needless to say, he wasn’t happy about it, but he did go along with me.
Shortly after being back home, I felt it was time to be proactive and determine if Joe was having any neurological changes to his brain.
Joe’s mother died from Alzheimer’s and his sister was suffereing from it, so we made an appointment for a screening,
After a 6 hour process of testings, questions and an MRI, it was determined that Joe had mild cognitive imparement, all within normal brain changes for an 82 year old man…no restricitons on any activity going forward from there.
This incident opened up my eyes as to things that needed to be put into place so should that day come that there was a major health crisis for Joe or me, things would be in order.
We needed to update our wills, have our end of life wishes known and set up financial and medical POA’s (power of attorney) for both of us. We hired an elder law attorney and got those pieces in place.
I became Joe’s full financial and medical POA and Joe’s daughter is set up as mine.
That was the first important duck in the row…getting the legal things in place.
The rest of that year and the next year, 2020…how could we forget…COVID…all went normal for us.
We stayed healthy, Joe was busy at his office helping a client out of a tax crisis, my new wellness business was starting to take off and my chef business continued to thrive…life for the Geeslin’s was really good.
Now, it’s May 2021…
The Citadel Class of ’59 Pinehurst reunion…and the class determined it would be the last one.
Joe really wanted to go, especially because it was going to be the last, so we talked about it…me feeling uncomfortable about him driving that distance alone…but he had decided to not take the detour first to Lynchburg to see his sister.
By this time, she was bed ridden, non verbal and wasn’t recognizing anyone so we agreed it would be much better for him to have the memories of her before she was in that state.
So, Joe packed his things as usual. His clothes, books on tape, the electric cooler filled with waters and non alcoholic beer…NO red flags that he shouldn’t be going…NONE.
During the summer of 2020, I had installed the Life360 app on our phones, primarily because occasionally Joe would bike ride alone and I thought it was a great safety feature if he had an accident, I could find him.
It also helped for that occasional time he couldn’t find his phone…being able to “see” that yes indeed, he just left it at the office.
On the early morning of Wednesday, May 12th, 2021, Joe was loaded up and ready to head out on his trip…coffee to go in hand, I gave him a hug and kiss goodbye and of course I tell him…“drive carefully hunny!”
His plan was to drive as far as Roanoak, Virgina, stop and get a room and drive on in to Pinehurst the next morning.
I’m feeling great knowing I have that Life360 app on my phone so I can see where he’s at on his drive.
Joe calls me when he’s stopped for lunch and he’s in great spirits…I’m happy.
I’m participating in an online webinar starting that day for 3 days, so it’s actually a great time for him to be out of the house.
I check the app from time to time and Joe is rolling along great…so I stay focused on the webinar.
Later in the afternoon, about 4 PM, I glance at the app and I see Joe has just gone PAST Roanoak, staying on Hwy 81…so I call him.
Me: “Hey hunny, looks like you’ve past Roanoak where you were going to stop for the night?”
Joe: “I’m ok, I know where I’m going..I feel fine, I’m going to keep going.”
Me: “But you’re not on the right road to get to Pinehurst hunny…you’re on the highway that will take you to DC! Please turn around and go back to Roanoak, get a room and start fresh tomorrow…that was the plan..please turn around and go back…if you keep going, you will end up in DC!…please, turn around and go back…I love you.”
Joe: “Ok Ok OK…love you too.”
I give a sigh of relief and focus back on my computer screen and I’m not sure of the time frame..5 minutes, 10 or 15.…but my phone rang…it was Joe.
Joe: “Ah…hi hunny.…here”
Here’s what I heard next on Joe’s phone: “Hi Mrs.Geeslin, this is Trooper Mike…everything is OK…but I’ve pulled your husband over for driving the opposite direction on the interstate.”
Joe literally just turned around on the interstate.
Trooper MIke: “Has Joe been confused lately?”
Me: “No, he’s been fine!”
Mind you, I’m shaking at this point…
Trooper Mike: “He doens’t know what time it is, where he is or who the President of the United States is…”
Joe was taken into what’s called an emergency custody order.
The Lexus was parked in a Hardee’s parking lot and he was driven by Trooper Mike to a nearby medical clinic, where he was examined and stayed the night.
I called Mom and Steve and I’m hysterical…they come over and stay with me.
I was then put in communication with a man named Rich, who was in charge of orchestrating the process of releasing Joe and screening who would be picking Joe up.
By the time that process was finished and it was arranged that Joe’s youngest son and his wife, who live in DC, would be coming to get him and as well as the Lexus to drive back to their home in Falls Church, it was 11:30 that night…
I. Was. Spent.
That day was the last day my husband would drive a car.
Steve flew out to DC and the plan was for him to stay a few days before driving the Lexus and Joe back home. The entire time he was there, Joe was disoriented, confused and not “himself” according to Steve, so I’m already making arrangements with our primary care physician for a virtual neurologist “exam” as soon as Joe and Steve got home.
I needed a third party to be the one to tell him he couldn’t drive…as the man LOVES to drive…even if having to add the word YET to the end of that sentence to avoid major pushback.…and that was the first of many compassionate lies to come.
Steve and Joe got home on May 19th and on May 20th, we had the virtual neurological appointment. We…the doctor and I…focused on the fact of making it clear to Joe that they needed to do some further exams and in the meantime, NO DRIVING until we knew more.
He did have further testing soon after that and an MRI to determine if he had experienced a TIA…which he didn’t have a TIA but did have further brain changes…it was clear now what we would be facing.
Because of having Duck 1 in place, I had full control over any financial or legal matters. Fortunately, the case Joe had been working for his client was completed, so no issues there and although his practice was really closed at this point, he still did want to go in everyday…and I was fine with that.
Other than Joe not driving, at this stage, things are more or less back to normal. Then I’m starting to notice more little “changes” in Joe’s behavior and memory and I knew I needed to take the next step.
Find someone who can guide me through what this process of memory loss/dementia is going to look like…for Joe and ME.…the second duck in the row.
I made an appointment with Jessie Hillock, owner of The Memory Compass, to come and do an in home evaluation of Joe to see if his results would be same or different from the very clinical, cold assessment at the neurologist office.
Jessie was lovely and made Joe feel so comfortable, simply having conversation with him but at the same time, able to make observations and ask questions that gave her the data she needed to create a report on her findings…and it revealed the same outcome as the neurologist, that Joe was most definitely in the early stages of dementia.
That was July 2021.
Jessie gave me a good idea of what the progression can look like and what I should consider having in place.
With no long term health care insurance, if I needed in home care for Joe, I would need to get him qualified for the medicaid waiver which would cover a caregiver helping me in our home.
I put this on the back burner at this point as we weren’t anywhere near that stage…yet.
She also said that 65% of caregivers will die before the person they are caring for.…fact.
And the rest of our 2021 was filled from seeing friends in Culver in August to visiting the kids in DC with Mom and Steve in September to going to the Citadel for Joe’s class of ’59 reunion at the school’s homecoming in mid November…of course, me behind the wheel.
The winter months of late 2021 and into 2022 were uneventful but I could see further changes with Joe…subtle, but still there.
I had Jessie come for another evaluation in March of 2022 and the changes from her first visit in July of 2021 were showing he had moved into the next stage of dementia. This is when she stressed it would be wise for me to at least get him on the list at a memory care facility…just in case we needed it some day.…I put that on the back burner too.
Again, we kept going and living our lives and when the end of April rolled around, we took our spring trip with Mom and Steve to DC to see the kids and grandkids and even though the changes in Joe’s memory were noticeable, he was still managing pretty well in the family activities.
In May, a close friend of mine was coming to Indiana for a wedding and asked if I wanted to join her. It was in Ft. Wayne and we’d drive up and spend the night and come back the next day. The only way this would work is if Steve could spend the night at our house so Joe wouldn’t be alone.
That was the first of my future overnight getways with Steve stepping in to “hang out” with Joe.…we jokingly called it “Man Camp.”
At the end of September, we had a surprise 90th birthday party for Mom and my sister, Carolyn was here from Australia. We had extended family fly in from around the country and we all had fun together…and Joe did great with everyone and all the confusion.
By early October, I could tell it was time to get Joe qualified for the medicaid waiver, as in home help was going to be eminent.…Duck # 3 in the row.
Jessie had given me the heads up that if could be a grueling process and highly recommended using an elder law attorney. She was happy to hear we already had a relationshio with Applegate & Dillman and on October 12th, I had a consult with them of what that process would look like and if they felt confident we would qualify. Steve and Joe’s daughter, Susan, joined me.
And so that process started and honestly, it was similar to getting a mortgage, BUT worth every penny.
The information gathering process from me to the lawyers started on October 25th, I had to have two CICOA (Central Indiana Council On Aging) phone interviews and all of the information was filled by the attorney on November 30th.
On February 10th, 2023, we received notice from Indiana Family and Social Services that Joe qualified.…this was answered prayers.
And this is also the time I made the calls to get him on the list for a memory care facility that accepted medicaid.…Duck # 4 in the row.
I contacted an in home health care company that was recommended to me and put the plan in to motion for a part time caregiver so I could have some time “off”.
At this point, I was only taking Joe into the office 3 days a week…staying home Mondays and Fridays.
Steve stepped up and said he’d like to stay with Joe on Mondays and Fridays and I was thrilled. Steve got Joe exercising, they did errands together and enjoyed just hanging out reading and relaxing too.
That was the beginning of the bigger blessing that started in the middle of May…
The in home health care services company I talked to, The Master’s Touch, told us that a family member can become a paid caregiver. Steve went through the orientation process and everything required to become Joe’s full time caregiver which was a blessing as there were no qualified caregivers available to help me with Joe.
Initially, Joe qualified for 40 hours a week of in home care and after a couple months, that was increased to 56 hours a week.
Steve joyfully showed up everyday, 7 days a week and it was a relief for me knowing he was getting paid for something he would have done for me without pay.…it truly does take a village.
And the final Duck in the row…accepting and knowing your limits for caregiving and doing what’s best for your loved one and YOU…Duck # 5…
Until you experience what it’s like to lose a little bit of someone day by day, little by little…I really can’t explain what that’s like.
There were days that I thought if everything with Joe’s memory loss stayed “just like this”, we could go along for a long time here at home.…but change continued to happen.
You MUST accept that once providing care is beyond your skill set, it’s better for your loved one and YOU to have them with skilled caregivers that are trained for that level of care.
As I’m writing this, my Mom just called to say HI and catch up on our day and she said Steve went by to visit Joe today. Joe was sitting with a couple other guys having lunch together and was cheerful and happy.
You see, it’s BETTER for Joe that he’s around more people than just Steve and me. The staff keeps them engaged, cared for and SAFE.
I know this post has been a long read, but honestly, it was a good piece for me to write from a personal place.…very similar to the cleansing effect writing the post about the scam I experienced last summer.…if you haven’t read that one, click here and it will take you there.
Like I said in the beginning, if this post helps one person to take action or start asking questions, it’s worth it.
What I’ve gone through with Joe has been unbelievably hard, but I can guarantee if I hadn’t had these things in place beforehand, this experience would have been more than a nightmare.
Memory loss can be a sneaky, hidden disease that can disguise itself deep inside the routines of our lives…get your ducks in a row so if that day comes with someone you love, you’re ready.
Wow! I knew some of the story but not all. We have all of our legal matters done but if this happens to one of us getting qualified for help through Medicaid sounds like a lifesaver. Maybe I need to call my lawyer and start getting my Ducks in a Row? (Tom isn’t the person that will even think about this so it will be up to me!
Yes Robin, do schedule a consult so they can help you determine if you’ll qualify…each state is different!
Thank you Liz! Sharing this now….so helpful and I am appreciative of you sharing as I can only imagine how difficult it has been!
Hugs, Kirsten
Liz, I cried! as I’m going through so much with my precious husband like you, dementia is a horrible disease, cold and lonely for the one who has it, and sad and grueling for care giver! I have a duck or two kinda in a row but much work to do!! thank you for putting your pain and joy of doing the right thing for both Joe and yourself!
Thank you Barb and this journey isn’t one that is understood until you actually experience it. Ask for help, surround yourself with positivity and I’m just a call away if you need a shoulder!!!