Kicking Tires

 The past couple months have led to more decline despite a stable test score at the neurologist.  Hair washing is sporadic and dressing has become interesting.  My dad has started wearing 2 dress shirts at a time or a golf shirt over a dress shirt.  He had an awful reaction of some sort on his face so he had to stop shaving for 2 weeks.  Never in my life have I seen him go even a day without shaving but he wore it well! After 2 weeks the dermatologist gave the go ahead to shave but my dad was hesitant.  I think he wasn't sure what to do but he did figure it out.  At least I think he did; several of the "Blue Girls" have taking a liking to him and help him more than we know.  They called me yesterday in a bit of a panic because they said my dad was worried that something had happened to me.  I could tell when I spoke with him that he was very worried and he started to cry when I said goodbye and I love you at the end of the conversation.  This same thing happened a couple weeks ago when Paul at the front desk asked me to make a trip over because he thought something had happened to Connor.  When I got there, he was anxiously waiting in the lobby and started to tear up when he saw me asking if everything was ok.  We spent some time sitting outside repeating that Connor was fine and at school.  Alzheimer's patients often get mean as their disease worsens but my dad just gets sweeter and more emotional.  I am not sure which is worse honestly.  My heart breaks every time he cries and I ask myself if I should bring him to live with us.  Then I hear my mom saying "it's too much stress for you" and I have the same worries.  I also do think he enjoys where he lives and likes seeing all kinds of people and having his own space.  I wish there was more to do for someone with dementia but we struggle finding those activities; especially in a Covid environment.  The frequent saying from my dad is "I'm just kicking tires" ....

Are we done yet? Quarantine 2020

I am sure so many people feel this way. COVID19 hit middle of March putting us on stay at home orders until this week. Dublin Retirement Village stopped allowing visitors during this time. Normally, I can gage how my dad is doing by looking at his apartment. I can no longer tell if he is having bladder leakage because someone else is doing the laundry or know if he has been rummaging.  Our dad has had more bad days than good during this quarantine. At times he has thought he was in meetings with Trump’s advisors for healthcare; maybe this is from the enormous amount of press conferences he has watched. Other times he has asked if I remember meetings with the doctors about mom and how he misses her. There have also been tears on some lonely days saying how much he misses me and the kids. My dad may not be the grandpa that gets his grandkids out all the time on fun adventures but the love he has for them is deep and constant. It’s a quiet, supportive love.  Much like the one I had growing up. It was a place of security and warmth. 

Shortly after quarantine started, I ordered Echo Shows for myself and my dad. The first couple weeks it went well and then he started playing with it too much. I guess all those things at Alexa pops on the screen saying “Alexa tell me the story of the Dewine press conference today” or “would you like to play sports trivia” were too tempting not to start pushing buttons on the unit. Which in turn, shut off the video component so I can no longer “drop in” on him. There is a very kind woman Sharon that has fixed it a couple times but I feel bad continually asking her. At one point, Kate and I were talking to him on the Echo but couldn’t see him. I spent 10 minutes trying to get him to push one simple button to turn on the video with no success. Kate said “let someone younger try”. I think she thought she could explain it more simply. She spent another 10 minutes trying but still no success. We got a good laugh out of it. Scott and I have struggled with whether he is better left at DRV or should be home with us. Whenever his routine is altered he gets more confused. He likes his confined space of his apartment but misses us. Is he exposed to less there than he would be with one of us? We don’t know. Anytime he has had to stay with Scott the day or night of a procedure, he wants to go home. Home to his apartment not stay at the home where he lived for 32 years. So the decision is a difficult one. For now, we are hoping restrictions lift soon and he can get back to the country club, grocery, etc.  Although I think he snuck in a few grocery trips. He can be sneaky 😊. 

Today, we are sitting at the urology procedure center waiting on Botox for the bladder. It’s a good day. Dad knew his birthday and drug allergies and looked well groomed other than his quarantine hair. It’s amazing how some days are better than others yet nothing changes each day to trigger a difference. I am thankful for the time just to sit with him. It wa a crazy morning of trying to work on a rental real estate deal and as soon as I was able to sit with him in the quiet of a prep room all my angst disappeared. He said to the nurse “isn’t she the sweetest?” and I thought “nothing like you Dad”. 

Disappearing Act

I stopped over at the house about 8:00 tonight to set up a new pill box. Scott had been upstairs working. He came down and we talked for a couple minutes. I knew my dad had been home since golfing that afternoon because his cell phone was on the kitchen counter. A few hours before, Life360  had located him at the country club. Scott thought he was asleep in the bedroom. Often after a day of golf he will go home and sleep for several hours.  I went back to his bedroom to wake him and give him his nightly pills only to find he wasn’t there. I went back out to the kitchen and had had Scott go check the bathroom. We could not find him. I had to leave to pick up Connor and Scott was heading to play hockey. Scott called the club thinking he had gone there with no luck. I stopped back at the house after getting Connor and his bedroom door was now shut. When I knocked and called into the room he said he was sleeping. I gave him his pills and asked where he was a half hour ago and he said he was laying down. I said well you weren’t in your room so I was worried. He got a little defensive and said he was laying down. I left and called him a half hour afterwards to remind him the Browns were on tv. He answered the phone which was surprising. Mystery is where did he go?

Real Estate

My dad is fixated on selling his house and moving right now.  I called one sales manager today at Muirfield Ridge to alert her to his mental state and asked her to please not move forward with him signing any documents for a home purchase.  My dad called this evening and said he had spoken with an old friend, John Morris, and John was supportive of him moving.  I told my dad that we needed to be cogniscent of the fact that he has dementia and may need additional help at some point so buying a new home may not be ideal.  I also briefly mentioned the driving thing and he got very irritated.  I told him that it would be good for us to sit down and do a Ben Franklin list about moving just like he had us do as kids and young adults.  He softened a little and said that was a good idea. 

In regards to the driving, I am emailing his primary care doctor, Joan King, the driving report this evening.  We have an appointment with her tomorrow and I am going to ask for her support on telling him not to drive. 

I Wish You Well

August 5, 2008

I woke up to a text from Scott.  The text included an attachment of a note my dad had written to Scott. The note said "Remember this is the last night for the boys at my house! I wish you well.  Dad".  Scott was extremely upset by this thinking he and the boys are not welcome at my parent's house. Due to Scott separating from Jenny, Scott has been living at my parents house. This has presented some confusion for my dad evidently.  Scott played in the club championship in the morning and my dad went to follow his round which adding insult to injury for Scott.  He didn't understand how my dad could leave such a cruel note just several hours before and then have enough love and care to want to watch him play golf.  I ended up going to talk to my dad later that day.  He asked me if I knew about the note.  I responded yes and asked him to help me understand what he was thinking.  He tried to explain his thoughts but kept going back to Scott not keeping his commitment to my dad and kept mentioning Mike Kleeman.  He said this all started when Kleeman was visiting.  After him mentioning this a couple times and then adding to it by saying that he never went upstairs when Kleeman was here to see what was happening "up there".  It hit me like a lead balloon, he thought Scott was gay.  I asked him outright and he took a deep breath, laid his hands on the counter and leaned over and very seriously answered "Yes, I think he may be gay".  I had to fight back my laughter as I knew this to be untrue.  I calmly tried to explain to him that Scott is not gay and the only reason Mike had stayed at the house was because he came in town to play in the charity golf outing that was in memory of my mom.   He seemed somewhat relieved but not convinced.  My dad then asked me what he should do with the situation.   I responded that when I'm not sure what to do I ask myself, "what would mom do?".  I then went on to say that she would tell Scott that she loved him and he could stay at the house as long as he needed.  My dad shook his head and said, "you're right".  I gave him a hug and told him I loved him.  He then left to go find his phone at the country club and buy Matthew a birthday card before the birthday party. 

My dad showed up at my house about a half hour later with two birthday cards for his grandson Matthew.  He asked my opinion as to which one was better.  The first one said "Happy Birthday Brother" and the second one was also addressed to a brother.  I told him I had many extra cards he could look at that may be a better fit.  When one of my kids pointed out that it said "Brother" he was embarrassed and felt bad.  He picked out a card from my stash and signed it.  However, when he asked me how it looked I noticed he signed it "Love, Uncle David".  We got a second card that he signed again, but the same way "Love, Uncle David".  I just crossed it out and wrote "Papa". 

The driving issue has become more of an issue the last couple weeks as well.  Immediately following the driving test, my dad was great about using GoGoGrandparent to get to places that were outside the parameters we had discussed with him.  Then as weeks passed, he started going out for drives and venturing farther away.  He still wasn't getting lost but it was not part of the plan we agreed upon.  He also became defiant about sticking to the plan so we determined we needed to remove the car from his environment.  My dad had backed into a friend's mailbox and put a good dent in the rear hatch.  We took the car to get it into the body shop this week to start repairs.  We do not have a plan in place for telling him it may not be coming back. 

It was an exhausting, emotional day.  As much as we know and can tell ourselves that the disease is leading his words and actions, the sting is still ever present.  I almost think it may be easier when we are out of this stage and his memory is much worse.  Maybe then there will not be defiance, distrust and paranoia with us.  I am thankful my mom is in a better place and does not have to endure these incredibly difficult days. 

Kitty Kate

I don't know why I was surprised when I went to pick Kate up at school today and the teachers were laughing about what she had them write for her VIP poster. (See picture). They said she talks nonstop and was showing them her back bends. I am really not sure where these personality traits come from but I don't think it's me. Other than her love of babies. In Target yesterday she saw a baby in a shopping cart in our aisle and said "we should get one of those" pointing to the baby. I said I think we have enough kids in our family. She got very loud saying "no we don't. You should buy me one of those!" If only they stayed babies then maybe . . .

What's Eating Connor?

Starting January 18th this year, Connor started having stomach pain again.  We have gone through this off and on for a couple years now.  2 years ago when we saw GI, they did bloodwork and fecal tests which showed nothing.  At that time, we did Prevacid and Miralax along with Levsin which did give him some relief.  He is now again on Prevacid and Levsin.  Bloodwork was repeated with nothing found.  An xray was done with nothing and we are going to do an ultrasound next week.  We cannot get in to see GI until March 15th. 

I must say I am a little hesitant to put him through multiple tests when in the end it is most likely something related to his diet.  I tried talking to him tonight about trying dairy free and gluten free for a period of time.  He was not too happy about it but I think he feels bad enough to try anything.  He came home from school again today because the abdominal pain was so bad.  A dear friend recommended a homeopathic doctor that I may investigate further.  It is weighing heavy on me not knowing what is going on with him and watching him so uncomfortable.  We had a couple days this week where he was just the old, happy Connor and the day was so much "lighter".  Some may say it is something emotional, but I really think that is not the case.  His teacher said everything is good at school.  His friendships are still good.  Jeff has been traveling a lot but that is not necessarily anything new.  I do think that stress makes it worse but I don't think it is causing it.  We will continue to do more research and say prayers!