A Door is a Door...

Eli and dad were recently at Utah Valley University's library with Tanner, checking out movies. While waiting for Tanner, dad needed to go the bathroom; so Eli decided to go along.

Dad was quicker then Eli, and as dad was washing his hands couple of students were also washing their hands. When dad was done, he was a bit confused by all the doors and asked the two students which door went out. After pointing out the correct door to dad, the two students started making fun of dad. While they were laughing, Eli (still in the stall) "politely" informed the two students that dad had dementia and they better pray that when they are 82 they don't have to deal with the same issues.

After Eli told me about this incident, I realized that when dad asks where his room is if we aren't exact in explaining what door goes to his bedroom, he get confused. He sees the doors to the pantry next to the door to his bedroom and doesn't know which one we are talking about. Dad's memory loss has been a very slow process, and he still does really well but incidents like this kind of open our eyes to how dad's mind works and how we need to be helping him.

The Black Hole...

Things in dad's room have a way of disappearing. It's really kind of mind-boggling. Dad will have something in his hand and go in to his room, then come out later asking if anyone has seen whatever it is he was carrying.

It's funny, when we were down in Oceanside in August, Suzy asked me if dad's room still has a black hole in it. I had to laugh!

Yesterday Eli & I took dad out to lunch for Veteran's Day. Half way through lunch I noticed dad was wearing his reading glasses. When I asked him where his other glasses were he told me his didn't know. Eli said he had come out of his room wearing his reading glasses in the morning & when he went looking he couldn't find the other ones. I told him the regular places to look...hanging on the lampshade, inside his scripture case, and in his sock drawer are most common.

When I got home from work I saw dad was still wearing his reading glasses, and Eli told me he had been unable to find the other ones. Thinking to myself, "why is it always the mom that has to find things?" I went to check all dad's hiding places. I looked everywhere, even under the bathroom sink. No glasses anywhere...I did find some pants that I'd searched all his drawers looking for the other day though! I even went back in at bedtime and double checked everywhere. Still no glasses.

Today when I got home, I half expected to see dad wearing his glasses. Nope, still no glasses. There is an eyeglasses store in Orem called America's Best that sells two pair of glasses starting at $69. What a great idea, I can hide the extra pair for when dad misplaces the ones he usually wears. I went online and made dad an appointment for tomorrow. I was thinking it will be nice to have an extra pair, but we will probably end up waiting a week for the new ones to arrive.

It's my turn to teach Relief Society this Sunday, so I was getting my books together to come up to my room and work on the lesson, when I got an impression to check dad's dresser one more time. I had already checked in several times, but figured once more couldn't hurt.

Dad has lots of pictures and other trinkets on his dresser. As I was looking around, I started picking up the pictures & looking behind them...thinking, "there isn't room here for a pair of glasses." Then I noticed dad's watch case. It's a vertical jewelry case with a glass front and three padded dowels the size of a watch band for holding watches. Down at the bottom of the case a piece of glass caught my eye. Dad's glasses! I guess when he was putting his watch away, he placed his glasses in there too. One more place to add to the list of hiding places for lost stuff!

We will still keep the eye appointment tomorrow, but at least now dad can wear these glasses while we wait for the new ones.

Room #12

Sometimes dad forgets that this is my house and thinks we are in a hotel. Usually the clue that that's what he's thinking is the fact that he will ask, "What's our status?" It used to be when I would ask what he meant by status, he would ask how long we were going to be staying here and when would we be going home.

Tonight when he asked me what our status was, I replied, "This is my house and we are in Utah, this is where we live." At first he was satisfied with that response, then he came back and asked, "Does we include me?" To which I explained, "Yes, you live with me and my family. All you stuff is here in your bedroom." Adding the last sentence because the usual next question is whether he has all his clothes here, but tonight he surprised me. His follow up question was, "Does it have my name on it? Is it number 12?"

After moving in with us, dad's memory of living at Jamestown for a year quickly disappeared. I always feel bad when we run into some of the staff from there, because they all loved dad so much and seem hurt at how quickly he forgot them. Tonight he surprised me because his room at Jamestown was #12 and his name was on the wall beside the door.

All my bags are packed...

Lately when dad asks when we are going to California I remind him that we were just there last month. I feel bad reminding him about something he has no memory of happening, so on Saturday when he asked, I told we had just been down for a visit, but would probably be going again in November for Thanksgiving.

Yesterday after church he asked, "Where am I going...?" I told him that it was Sunday, so we didn't have plans to go anywhere. He seemed okay with that answers, so I started making dinner and he went to his room to change out of his church clothes.

As dinner was cooking, I sat down at the computer to check Facebook and my sisters blog, then started playing some games...it's amazing how much time you can waste on the computer and not realize it.

Anyway, I was sitting there at the computer when all of a sudden, dad's face comes around the corner....lately, when dad's got a question that he's embarrassed to ask out loud he gets really close to your face so he can whisper. I looked up startled and dad asked. "Where am I going?" I told him it was Sunday and we didn't have plans to go anywhere. That answer wasn't what he was looking for, so he said, "I know, but why am I packing a suitcase? Where am I going?"

When I went into his room with him, he had started packing ALL his belongings into a suitcase.

California

Even though dad has been living in Utah for 16 months now, it is not uncommon for him to ask about either when he is going back to California or if someone is coming to pick him up. At first I felt a little guilty about him having to make the move to a colder climate and let him believe he might return to California once the colder weather came. Then few months after he first moved up here, he started remembering the fact that Utah was home now and quit asking about when he was going "home" to California.

We recently spent 10 days in Oceanside for a vacation. We prepared dad in advance so he knew we were going to visit, but that he was also coming back with us. We also kept telling him it was "next month" then "in a few weeks" until the night before we left, so he wouldn't worry and pack his suitcase over and over.

We were a little concerned that if we stayed with my sister Suzy that dad would get confused and go looking for his room, since he had lived with her & her family for four years before moving up to Utah. So instead, we rented a condo at the beach not far from their home.

Dad did pretty good while we were there...well, let's say he wasn't any more confused there then he is at home. He did ask Suzy where she got her dark hair a few times, because he was thinking she was me.

One morning we met Suzy and three of her boys, Spencer, Brandon and Robby, and our niece Claire & her husband Dan at the Oceanside harbor to go jet skiing. Suzy had recently bruised her ribs on a bike ride and was not able to jet ski, so she took dad back to her house while the rest of us played. Later, we met my nephew Evan and his family at the beach for a surfing lesson, so it was kind of late in the afternoon when I went to get dad at Suzy's.

As dad and I were driving back to the condo, dad asked "When is it that we are going to California?" When I told Eli about the conversation his reply was, "Maybe we can tell the boys we live in California," since dad no longer recognizes when he is there.

We have been home about a week and a half now and the weather has been quite pleasant...warm with a breeze, not too hot. Last night as dad and I were taking a walk he asked me, "So are you going back to Utah?" I just told him "Yes."

I think that California has just become a place in dad's memory. He knows he lived there and it was warm and sunny, but the real details of "California" are gone.

Scotty's Funnies

Last night at the dinner table, dad asked Eli and I if we are married. After we told him we were, he started singing, "All I want for Christmas is my mem-or-ree!" I'm glad dad can laugh about this!

Got Falshlight?

Dad does not go anywhere without a flashlight. Part of his morning routine of getting dressed is either putting a small flashlight in his front pocket or hanging one on his belt from the leather strap he has added to it.

A few nights ago at about 9:30, dad was feeling a little caged and wanted to go for a ride. I was already in my jammies and didn't really want to change, but remembered I needed to pick up a prescription a Walgreen's and could use the drive through.

As I was getting shoes on and grabbing my keys and wallet, dad disappeared into his room. I thought he was getting a bottle of water and waited a bit, but he never came back out. Dad is always happy to run errands or go for a ride and doesn't usually forget, but I went to check on him anyway. When I got to his bedroom, I found him standing there with his belt undone trying to get the strap of a flashlight over the buckle. The thing was...he already had a flashlight hanging from the other side of his belt.

At first I was going to say something, but just as I was deciding not to he realized he now had two flashlights. He grabbed one in each hand, looked up at me with a grin and said, "You can never be too prepared."

Are you my brother?

My uncle Skippy (dad's youngest brother and last living sibling) and Donna Bolander (Dad's niece that is two years older than him) drove down from Blackfoot, ID for a visit last weekend.

They arrived Friday evening and we had a very nice visit. They had started driving around 3 in the afternoon and hadn't eaten dinner yet when they got here. Because I thought they were coming Saturday morning we had already eaten, so I went ahead and made dinner for them. Dad, forgetting that he had already eaten dinner twice (once with Eli & the boys and once with me after my class) had dinner with them also. It's been so hard to get dad to finish a meal lately, it was good to see him eating so good.

Friday evening we all had a very nice visit and dad was actually more conversational then usual, but poor Donna...she has been on dad's mind quite a bit lately. He has been telling me stories about how he and Aunt Verna (his twin sister) grew up playing with Donna...About every twenty minutes, dad would ask Donna how things are in "her neck of the woods," and did she drive all the way to Provo.

Uncle Skip has two cute little Pomeranian dogs, Mandy & Buttons, that he brought with him. "The Girls" as Uncle Skip calls them, stayed at our house when Uncle Skip and Donna went to their hotel. Shortly after Uncle Skip left, Mandy jumped up on dad's lap...I think she thought he was Uncle Skip...it was really cute. Dad was surprised when she jumped onto his lap, and even though he tried to act like she was bothering him you could tell he liked it.

Dad is usually a late sleeper and on Saturdays we all like to sleep in, so at 9 a.m. when Uncle Skip rang the doorbell we were all still in bed. After letting them in, I went to tell dad that Uncle Skip & Donna were here...of course I had to remind him they had come by last night.

While dad was getting dressed Eli & Uncle Skip went to get breakfast. By the time they got back, dad had joined Donna and I in the living room. As they came in the door with the bags of food, dad asked who Eli's guest was. Poor Uncle Skip, I think he was a bit surprised that dad didn't recognize him.

For lunch we met some other Thomas family relatives for a barbecue in the park. It was a beautiful day and turned out to be a pretty good time. Tanner got some good pictures of dad and Uncle Skip together.

I like this one best.








Just a note: last night as dad & I were taking our evening walk we saw someone walking a Pomeranian. When I made a comment about how much it looked like Uncle Skip's dog Mandy, Dad had no recollection of Uncle Skip, Donna and the dogs coming to visit.

The sun must be down now...

Dad has been "sundowning" lately. The term "sundowning" refers to a state of confusion at the end of the day and into the night. For the last two nights I have almost been able to tell time by dad's level of confusion. It starts right about 9:30.

Growing up dad was never much of a conversationalist. I can't remember just sitting down to chat with him. It's not that we didn't talk to one another; dad just wasn't one for idle chatter. This disease has definitely changed that.

We are at a hard stage of the Dementia. Dad is aware enough to know that something is not right with him, but he forgets what it is. His short-term memory is also SO short that he has a hard time following most TV shows. Lately, as I am relaxing by watching a TV show before bed, dad wants to chat.

Tonight’s conversation started with dad saying he couldn't remember why he ever quit driving, so I told him the doctor suggested he quit when he stated having problems with his memory. We have had this conversation before and it usually leads to him telling me about when he used to drive truck and how much he loved driving. Tonight the conversation took a different turn.

Instead of continuing with the driving theme, dad said he just felt like a nothing. I quickly let him know he was not a nothing, but was important and very loved, which lead him to ask if he even had a wife any more. I reminded him that mom passed away five years ago. He then asked how old I was when she died.

Anyway, I don’t really need to rehash the whole conversation…it was way too tiring the first time! The thing was that usually it takes dad a few minutes to ask a question you have already answered, but the past few nights it’s been worse. I will literally just barely be done finishing my answer and he is asking the same question.

Can I just say I hate this disease!

What's For Dinner...

When I got home from work tonight, Eli already had some chicken cooking on the barbecue. I took a peek as I walking into the house and it looked really tasty...good thing cuz I worked through lunch and was very hungry.

I was up in our bedroom taking off my shoes and getting ready to change out of my work clothes when Eli called. As I was coming down the stairs, he informed me that we were going out to eat because dinner was burnt.

We debated between Fudrucker's and In-N-Out, and decided on In-N-Out because Eli had not been to the new one n Orem yet.

As we were reading the menu, I realized there wasn't a chicken or fish option which is what dad usually gets, so he ordered a cheeseburger and a strawberry shake instead of his usual chicken or fish and chocolate milk. Change is good, right?

The wait wasn't very long, so ten minutes later we had our food and everyone began eating...everyone but dad that is. Dad is really slow at everything he does, so I didn't worry at first. Then he was pulling the lettuce out of the bun because it was too big to bite, again I didn't say anything. A few minutes later I see that his strawberry shake is half gone, but his uneaten hamburger is wrapped in a napkin. As I was telling him he needed to quit drinking his shake and take a few bites of the hamburger, I flashed back to when the boys were little and we had to make them save their drinks for last or they wouldn't finish their meal.

Dad unwrapped the hamburger and started to nibble around the edges of the burger. I was satisfied he was going to eat and started to talk to Tanner about the math class he is taking. When I looked back over at dad, he had his hamburger wrapped up again. Frustrated, I reached across the table, picked up his shake, and set it down in front of me which got a dirty look from dad. I then explained that we are worried, because he is just not eating enough and that even though he saves food to "eat later," it never gets eaten.

This time dad got stubborn and just told me that he would eat when he was ready. At that point...with the girl at the next table watching...I decided that In-N-Out is not the place to argue with dad about finishing his meal.

When we got home, dad decided he wanted to go for a walk before coming in. He takes walks around the park across the street by himself and doesn't get lost...we watch from the house just to be sure he makes it back.

Hormel makes some single serving meals and dad really likes the ones that have chicken and either mashed potatoes or stuffing, so we try to keep some on hand. While dad was taking his walk, I cooked one of the meals and put it on a plate then set a place for him to eat.

When he came in from his walk I told him dinner was ready. He told me he wasn't hungry...big surprise! It took a while, but I was finally able to get him to eat most of the meal.

What's This Gooey Stuff All Over My Shoe

Our current remodeling project (putting a dining nook where the laundry room used to be) is at the mud and tape stage. Yesterday Eli and Connor taped all the seams, and this morning Connor mudded them while Eli was at work. When he was done, he cleaned the mud off all the tools & wiped up the glops that fell on the floor, then he went to his girlfriends house.

Eli got home from work at 3:00 and was checking to see if the mud was dry when he noticed a few places that needed more mud. After he touched up the few spots, he too cleaned up his mess, washed his tools, and dumped the leftover mud in the kitchen trash.

While Eli was touching up the wall, Dad was helping me plant a flowering vine by the arbor out back. We finished just in time for dinner, so as I was putting away the tools dad went in to wash his hands for dinner. Dinner was a chicken & pasta casserole...which was very good if I do say so myself, but I digress.

Dad is always the last one done eating. By the time he was finished eating and went to put his dishes in the sink, everyone else was already doing other things. I had been in the office on the computer, and got up to go to the bathroom. As I walked out of the office, I saw dad at the sink with his shoe off. I asked what happened and he said he'd got some kind of goop on his pants and shoe. Knowing that the dinner casserole had a white sauce on it, I asked if it was from dinner. Dad's response was that he'd forgot where it came from, but that must be it. I figured dad could handle it by himself so I went on into the bathroom.

From the bathroom, I could hear dad trying to clean the goop off himself and the floor. He was talking about not being able to get it off the floor, and realized that it was sheet-rock mud he had on his pants and shoes. Since I was unable to go see what had happened, I called Eli to come help dad. Together they got the mess cleaned up.

You see...dad hates to see a trashcan filled to the top. Usually as the contents are beginning to get closer to the top of the trashcan, dad will put his foot in the trash to mash it down. Well...tonight when dad put his foot in the trash to pack it down, he stepped into the sheet-rock mud that Eli had thrown away.

I guess we need to be more careful about what we leave uncovered at the top of the trashcan.

You've Got Mail...

While dad was living at Jamestown last year, he received several cards and letters during the holiday season. He placed the pictures that were inside the cards and letters carefully on his dresser in a place where they could be easily seen. When visitors and Jamestown staff came to his room, dad was sure to tell them who people in the pictures were with great pride. The cards and letters were all placed in a neat stack on the corner of his dresser, among his collection of flashlights, watches, cuff-links and other treasures.

It wasn't until dad was living with us that I realized the reason the cards and letters were left out, instead of discarded or put away. Dad re-reads the cards and letters daily. He loves hearing about what is going on with family that he has not seen in awhile.

When I realized that dad was re-reading the cards & letters, I noticed that most of them were received around the holidays. That is except for the cards and letters he gets from his niece Donna Bolander. Donna's mother, my Aunt Lois, was an avid letter writer and it seems Donna has inherited that trait. She sends dad a card or letter about every six weeks. Then it dawned on me...Donna doesn't have a computer.

I know that it's been ages since I've had a book of stamps in my wallet, because now I am able to keep in touch with friends and family through emails and Facebook. So...I created an email account for dad! I checked for ScottyThomas, CallMeScotty, and JustCallMeScotty but they were all taken, so being very clever I decided on Vernon.justcallmescotty.thomas and it was available!

Dad has already received 4 "letters." Just like the other cards and letters, they are placed on the corner of his dresser so he can read and re-read them frequently.

Our visit to the VA

Today I took the day off work drove dad up to the VA hospital in Salt Lake City.

I have a friend that I met when I was working at the prison that works for the VA. He was the VA rep for veteran offenders & I was his liaison at the prison. I mentioned to him back in February that dad had applied for a VA Aid & Assistance pension that is available for veteran's needing home health care or assisted living and he suggested I also get dad enrolled at the VA hospital. I guess the VA has two sides, the benefits side & the medical side. And even though the pension dad had applied for was to pay for medical expenses, it is through the benefits side. By enrolling dad in the VA hospital he is now eligible for medical benefits. He has really good insurance & so far we haven't needed the VA for medical benefits, but since we don't have a crystal ball to see the future we thought it was a good idea.

Whenever we go to these types of meetings I have to walk a very fine line. I have to be able to talk to the people helping us about dad's situation without belittling him. Luckily, dad moves very slowly, so usually I can get a quick explanation in before he is in hearing distance. The intake guys desk was right next to the waiting room, so there wasn't much room for quick conversations. When he asked how he could help, I just quickly told him "My father has Dementia & we wanted to get him enrolled for medical benefits." I don't think dad heard, which was good, because he forgets that he has Dementia & then usually argues that he does not.

The hard part came later when the VA guy was asking about the pension payment for Aid & Assistance that dad is supposed to be getting. As he was looking at dad's paperwork he asked about the payment & I told him that the payments had not yet began. He questioned that the letter stated the payments would begin June 1st. That was when I had to explain, that later in the letter it also stated that because of medical evidence dad has been declared incompetent to handle his own finances and a fiduciary would need to be appointed. I started the sentence several times trying to avoid using the word incompetent in reference to dad, but there was just no way of getting around it. Surprisingly dad didn't say anything...at least not right away. As we were finishing up the meeting and getting ready to stand up, dad stopped and said, "And by the way, I am not incompetent." I should have just left it at that, but trying to explain myself I said, "Just for handling you finances dad." Dad then said, "I am not incompetent, even when it comes to my finances." I didn't say anymore.

Thank Heavens for the VA man at that point, he just reached out to shake dad's hand and said "Thank you for your service."

He's still got it...

This morning as I was waking up dad to give him his morning medicine, I asked him "How'd you sleep?" He closed his eyes & put his hands under his pillow & said "Just like this."

His memories may be fading, but he still has a sense of humor!

The memories are fading

Sunday as Dad, Connor, & I were getting into the car to come home from church Connor found a gray hair and quickly proceeded to pull it out. I told him he should have left it there because now three more will grow back. Then dad proceeded to tell Connor about his sister Verna.

Dad started out, "My twin sister Verna, in high school she" then he kind of hesitated looking for the right words. Then trailed off in a quiet voice with, "well, she's dead now" So I quickly picked up with the story he had started to tell by saying, "Didn't she go gray while she was in high school?" At that point dad finished telling his story about how growing up Aunt Verna had always had jet black hair, but that it started going gray while they were in high school and that she was completely gray by the time they graduated.

When dad was done, I mentioned that I always loved Aunt Verna's beautiful silver hair. Then dad asked, "Did you meet my sister?" So I said, "Yes, Aunt Verna. Remember when we lived in Santee, not too far from her." Stating more as a fact then a question to try a jog a memory. Then dad asked, "So, how do I know you?"

That's not the first time dad has forgotten what our relationship is. He knows that I am Michelle, but there are times when as he says my name, that just from the tone he uses when he says it, I can tell he doesn't remember that I am "Mickey"...I don't know if that makes any sense to anyone but me.

It is not uncommon for dad to ask "Who was your mother" or "Do you remember your mother" The first time he asked if I remembered my mother, I thought it was because he was beginning to forget her. But the yesterday when he asked me who my mom was, after I replied "Chips" he said, that's right and she died when you were a baby. Then it made sense to me...he was getting the story of Harriet (his first wife) dying when Norm was a baby confused.

For Christmas last year, my niece Guinevere & sister-in-law Toni decided to make a book for dad. It was going to be they story of his life. They gathered individual and family pictures from everyone and had us write a little bit about ourselves. How long we've been married, where we live, what the kids hobbies are, etc. When Guinevere first mentioned it I thought "What a great idea." Then when I got to see the book, even though it was well done, I thought "Oh, this is really dummied down" thinking that it was written like it was for a child. But dad LOVES that book, he reads it nightly! I am so glad that Guinevere got the idea and she and her mom were able to do such a good job a preserving those memories for dad.

So...this is my first attempt at blogging about the journey of caring for a parent with dementia. I have a friend at church who's mother was diagnosed with dementia earlier this year (her memory loss has progressed much faster then dad's) and her sister who is the primary care giver for her started a blog as therapy. Since I express myself best through writing, I thought it was a good idea. Hopefully this will be both a place for family and friends to be updated about the progression of dad's dementia and for me to express the feelings I am going through as we journey this LoNG aND WiNDiNG RoaD.