Apartment Update

Other parts of my story include the sweet apartment we are renting. my daughter helped me decide on picture placement. It makes a huge difference in making the apartment look finished and making it feel like home.

I thought I'd share a few snapshots of the living spaces with the prints on the wall. 

Rachel's Story

As if navigating an Alzheimer's diagnosis isn't bad enough...I was gullible and scammed. Here is where we were in February.

February 6, 2017

Rachel's Story (*AKA Racheal): She is a Standard Poodle and German Shepard mix. She was just over a year old. I got her to be a Service Dog for my husband as he has early-onset Alzheimer's.

I worked with a Service Dog breeder and trainer from May until the dog (we named her Rachel) was brought to us in September. I began to have concerns about his integrity when he brought Rachel to us. There were several things that he said about her training that frankly were not true. This person's Service Dogs are advertised for people with Autism and Alzheimer's.  

Rachel is shy and has anxiety and startles easily. She has some very good pet qualities, but I am not comfortable in continuing to try to mold her into a Service Dog for my husband. 

We've worked with Rachel and have gotten professional trainers to help us. Rachel has a good command of basic obedience commands.  She is fairly consistent and reliable in following instructions when she is at home with us. She knows "In your bed" and she knows "lay down". I use this when I need her to calm down or I need to keep her accountable while I work on something.  She also knows "go" which we use to reinforce moveable invisible boundaries.  She is crate trained and gets along really well with other dogs but she does not trust people. She is very capable of walking correctly on a leash but is not consistent in walking politely.  

Jordan and I have come to the conclusion that we cannot keep Rachel. I will need to begin figuring out the best way to re-home her. I have seen a big improvement in her behavior since we got her in September with lots of help from professional trainers. Both of us think Rachel has the potential to be a great dog.

The real issue is that Jordan cannot handle her with his Alzheimer's.  It's clear that we did not get the trained dog that we need. This is not Rachel's fault. --I was an "easy mark" when I was searching for help right after my husband's Alzheimer's diagnosis. 

The "breaking point" is that Jordan has been physically hurt as a result of Rachel's behavior. Yesterday when he was walking her she was startled and bolted, knocking Jordan to his knees. It's not the first time he's fallen because of Rachel. Last night he had a second and worse fall while he was walking her. Again, she bolted and Jordan fell. Worse, she began to run towards the parking lot.

I'm not equipped to transform Rachel and to work with Jordan's illness at the same time. I feel it would be irresponsible for me to continue to try to "make this work" when it puts Jordan at risk. Plus, because he can not control her, it puts her at risk too. 

Both Jordan and I are incredibly sad because we adore her.

My initial thought is that she may do better with some fostering and continued training either before joining a new family or as part of her new family.

The Rachel that I know is adorable, sweet, funny, and incredibly playful. She plays incredibly well with other dogs. She loves to run and is quite proud that she can jump the hurdle at the dog park and jump through the tunnel. She has the potential for fun agility play.

I'm worried about so many things about finding the right new owner for Rachel. I don't trust my judgment in assessing a good fit. I don't know how to overcome Rachel's overt fear of new people when potential new owners want to evaluate her for a fit with them. I also want to make sure that I let the new owner be fully aware of Rachel's challenges. 

The breeder and organization where I got Rachel is in CA. I began to have concerns about his integrity when he brought Rachel to us. There were several things that he said about her training that frankly were not true. This person's Service Dogs are advertised for people with Autism and Alzheimer's.  I have not tried to work with the breeder because when I re-read our contract (with more cynical eyes) I saw that the contract states additional help requires me to pay additional money. I also am not comfortable returning Rachel to him as I no longer trust him.  

Documenting Our Alzheimer's Journey

I know I promised that this blog will not become devoted to Alzheimer's. And I still promise. But...it has been almost all-consuming for me to navigate this condition. This space is where I share my stories and this is Part of the Story. 

I've shared some of the bone-crushing sadness that has sometimes overtaken me. I'm thinking many of the AZ posts downplay the sadness. 

It's important to me that I don't sugar coat what we are going through. 

Nesting...Again

With this move to Wilmington, we downsized...again. I know I talked about the last two moves...one as recently as November. I've mentioned that we downsized when we lived in Bellevue/Seattle. I loved that. I was surprised by how many endorphins I got from lightening our load. The Bellevue apartment had just 736 square feet. I thought of that small size as a badge of honor. 

When we downsized in NC, I earned another badge of honor. We went from living in a house to 853 square feet. --Granted, not as small as Bellevue. But, the new proud achievement is that this was the first time we downsized without any of our things stored in a utility room or storage unit. In the cross country move in 2010, we ruthlessly let go of our possessions in storage. Our thinking...do we love "this" (whatever the "this" was) enough to pay for it to move cross country with us. Keeping in mind that moving costs are affected by how much space we take up in the truck (movers) and what the weight of our stuff is.

When we got to the NC house we basically did not furnish several rooms in the house. In that time we enjoyed another aspect of fewer possessions. We got to live with a lot of "blank spaces". I'm not sure how to explain this...but seeing a room with clear surfaces provides a sense of calm.

So, when we moved to 835 square feet, it wasn't as difficult. We did give a few additional things up, but the big win was that we were not paying rent for our possessions to be in storage. YAY!

Long story, shorter...I've not regretted any of my downsizing experiences.

With this move, I had to really work on lightening our load even more. This time we are living in 667 square feet. The kitchen/dining table had to go as well as Jordan's desk. When I measured our living room furniture, I realized that it would not fit in the new space. The living room space is too small for the couch and chair we had.

On moving day, our new living room included two side chairs one side table and a footstool. Of course, we also have the credenza for the TV.  --But sitting wise, we had very little.

Our Alzheimer's Journey ~ 8/17/17

Here is an update from his most recent Dr. appointments. His AZ Psych was hard for both Jordan and me. Jordan does not do well in his Dr. appointments. It's weird...he can be "normal" with me before the appointment. But once we get into the Dr. Office he goes to his "other place". Stress? Is it because we are talking about his condition? I don't know. He did fairly well with his Primary Care Dr. 

But his AZ Psych was not great. When she talked directly to Jordan he mostly spoke gibberish. I don't know if any of you have experienced this. His "gibberish" is real words...but they don't make sense and they don't have context.

More Updating

It feels just yesterday I was giving a "little update".... (I kid). It feels like maybe a year ago. 

I made some super hard decisions to handle our new normal. In April Jordan's doctor was very clear that Jordan now required 24 / 7 care. My piecing together care with gaps between the caregiver leaving and my getting home was no longer going to work. Immediately I had to change my work schedule to manage the previous gaps in care. It was a tough balance. My employer was so understanding. They agreed to work with me in any way I needed. So I decided to take a leave of absence.

At some point during the leave of absence, it became clear that I wouldn't be able to go back to work. 

I am now Jordan's full-time caretaker. 

It has been one of the scariest decisions I've made. Leaving my job that I loved was hard. Making finances work is a different kind of balancing act. 

The second big change was made in tandem with leaving my job. We relocated to Wilmington. 

Our daughter is here. Plus, it is a small beach town which gives us new things to appreciate. The slower pace is palpable. There have been challenging days that I do not feel equipped for. I'm definitely not trained for it. 

There are not all rosy days...but there are still good days. Still days with no bad spells, still days when we are silly with lots of laughter. 

Our Alzheimer's Journey ~ 7/26/17

Overall we've had several REALLY good days.  We continue to be seizure free.  The potential side effects of the antipsychotic Rx appear to have subsided. His diabetes is under control. His insulin has been reduced to 10 units (from 42 units a year ago).

He still has bouts of sadness...but it doesn't appear to be as often as before. 

When he does go into his "I'm not here" zone he is more and more difficult to manage. The good news is that it doesn't happen that often. 

Our Alzheimer's Journey ~ 7/6/17

Wanted to write that yesterday was a pretty perfect day. No walkabouts. We went to the Sr. Center for a painting class... Afterward, we went to the park to look for alligators. 

We spent most of the day out and about. Last night we had Stouffer's lasagna and I made a homemade peach cobbler. (I know, pretty odd). He loved the cobbler, with ice cream (of course).

Our Alzheimer's Journey ~ 7/3/17

We are in Wilmington now.

It was very difficult getting packed and moved. Jordan kept unpacking our boxes. It sounds funny...but it is really exhausting. Jordan was frustrated too. He kept asking what he could do to help...but was not able to execute. Then he became afraid that the movers were stealing our things. He did not like that.

By the end of the day he was done. He didn't want to get in the car when we were leaving. That took a while. Then when we were 15 minutes away from our new place...which was time sensitive due to signing and the office closing, etc; we stopped for gas. Jordan got out of the car and would not get back in. I can't tell you how hard it is to convince him to get in the car when he doesn't want to.

We had a really good week last week. The first week we had several walkabouts (him leaving and me going out to find him or follow him). 

The last week I think we were down to one walkabout. 

This weekend we had something like three.  He was not a happy camper this weekend. He was mean...throwing my stuff. This is the hard part. He keeps taking things that really don't belong to him. Then I can't find things that I really need...like my calendar that has all our Dr. appointments and contacts in it. --Yep he took it and hid it. I couldn't find it for 2 weeks. That is very distressing.

I'm worried he will take the keys or my wallet and hide them. We will be in a pickle if that happens.

He went through my pocketbook on Sunday (even after I asked him not to). Today I discovered an important letter I received is missing. I know specifically that I put it in the zipper part of the purse...and it is gone. 

This is incredibly hard. Yesterday I was not sure I did the right thing. I know I said it is hard.  I'm just exhausted. Yesterday we went to the grocery store...which was fine. But when we got home he refused to come inside. The groceries needed to go in the freezer and refrigerator and I was holding almost all of the bags (heavy). I begged him to come. Finally, I went inside thinking I'll just put this down and run right back out to get him. Of course, he was gone when I went back to get him. I found him...but this is what is difficult. 

Sorry, I guess this turned into a pity party for me. 

Jordan had a really hard day today...although it is ending on a good note. It was a day where he woke me up and asked me what was wrong with him. Around lunch time he was depressed and couldn't stop crying. He's also said he is afraid. 

You know about the hallucinations. On Friday we drove up to Raleigh for our first visit with a NeuroPsych. This is the person that will help manage the medications for hallucinations as well as depression. We doubled his antipsychotic on Friday. It's still considered a very low dose. I was thinking the hallucinations were getting better. But I'm really not sure.

Sometimes when he is distressed and telling me what is wrong I have trouble discerning if he is describing a hallucination. It is hard to tell...because he also has AZ...so sometimes there is crazy talk without hallucinations. He has definitely been flashing back to heartbreaking episodes that happened in his childhood.

Tonight we had dinner with Danielle.  He is always better when we are with her. Though he had a panic attack there and one in the car on the way home. Those had gotten better until today. 

When we got home we went to the hammock area of our complex. --I try to go there at least once a day with him. They have rope hammocks and rope double swings. We usually sit in a swing. He will usually agree to this anytime we are outside. Even if he is mad at me...he'll sit in the swing with me. The time in the swing under the trees calms us both down. It is soothing to sit under the trees and just be.

We are ending the night on a good note. ...Ice cream. He is in a good mood at the moment. 

A Little Update

I've been working on strategies to best address our continuingly changing "new normal". My sweet husband has dealt with several of the "complications" of Alzheimer's. I don't remember if I mentioned Jordan's seizures. They were very distressing for him. 

I've found that one of the most difficult things is to negotiate the medical maze and actually getting an appointment with a Doctor. He has several doctors that I am very pleased with. They are compassionate and willing to aggressively treat his conditions. But, they are booked ahead for months. 

The first course of treatment for the seizures was taking him off one of his medications "cold turkey". It is one that possibly exacerbates the potential for seizures. The cold turkey medication withdrawal was very hard. Very, very hard. Every day I reassured him that he will feel better soon. Thank goodness he has felt somewhat better. 

We added an anti-seizure medicine which has worked. 

In April it became clear that he was having hallucinations. I'm not sure if he had them during the time I was addressing his seizures. Like if the seizures masked them? 

Jordan says this is scaring the Sh*t out of him. We have an appointment with another specialist this week for this. 

I'm not quite sure how far along the Alzheimer's journey. We all understand that Alzheimer's means the memory fades. But, I had no idea about the other complications. 

Our Alzheimer's Journey ~ 5/18/17

Jordan's condition continues to worsen. He is most likely in Stage 6 (of the 7 stages) of Alzheimer's. There are good days and awful days. There are good moments and awful moments.

1. He now has hallucinations. Objects appear to move. The floor is often wavy. Most recently, there are people who are in the hallucinations. This scares him. There are many, many people in these hallucinations.

2. I help him with dressing now. I pick out all of his clothes. Some days I need to help put items on...but not every day.

3. He wears 3 winter coats every day...He frets if he can not find his gloves (I can't find them).

Our Alzheimer's Journey ~ 5/7/17

I have to make a note about getting a new CPAP.  The vascular concern is not about the CPAP. It's about Jordan's diabetes. He's had bouts where the sugar was too high and his A1C was "out of control". It's believed that the extended periods of out of control diabetes have been a contributor to the vascular issues. There's also a chance that he had a very small stroke at some point. (A silent stroke). 

Nothing Says Spring Like Baby Goats

Springtime is baby time at a farm. Mamacita has restocked her farm with cows and is boarding horses as well. It is her happy place. She also decided to get a few goats. They are supposed to eat the overgrown shrubs. Not sure how that part is going. 

Sadly, one of the mother goats had complications and was not able to nurse her babies. This meant the babies had to be bottle fed. To make it easier to feed the twins Dad brought them home to his backyard. 

These little guys are so cute. As you can see...they make Dad very happy. --He won't admit to this, but they wiggled their way right into his heart. 

These goats are too cute with their little bleats and their little horns. Watching them run and jump is so fun. I believe it is impossible to be cranky after watching these little guys jumping and running.

We went over to Dad's several times to play with these cute guys. But farm animals need to be on a farm (according to Dad). So when they weaned they went back to the farm with all of their goat friends.

Our Alzheimer's Journey ~ 4/12/17

Went to his primary care physician yesterday who is very concerned about the speed that Jordan's condition has progressed. He is going to consult with the Neurologist to discuss an updated brain image and potentially another neuro-psych testing. Jordan "escaped" yesterday while I was on the phone with Danielle. I thought he was in the bathroom. When I hung up he was NOWHERE. He went out of the bedroom door.

Today he escaped twice with his caregiver.

Dr. says Jordan cannot be left alone. Even when he is not alone he is hard to keep up with.

Sweet Buster Brown

My parents lost their dog in February. He passed over the rainbow bridge. I gave them this dog, a Scottie/Carin terrier mix that I named Buster. It's hard to believe he was ever this little. I remember bathing him in the bathroom sink. 

I got Buster to be part of my family. A dog for D. to grow up with. We had a dog, but who could resist that face? This was when my husband traveled quite a bit for work. Left to my own devices, I got us a puppy. 

I take the credit for house training him and leash training him. I also insisted on a "sit" on command and before any treats or dinner. This little guy was very food motivated. 

He was also stubborn. His training did not come without some standoffs between me and him. I was insistent that he be obedient even without treats. He felt that I was breaking some inherent contract. "Reward with praise? Okay, that's nice," he said, "but where is my treat?" It was a contest of wills. 

While Buster was still a puppy, albeit one with basic training, Dad had triple bypass surgery. He went to the doctor because he hadn't felt well. Long story short, they took him straight to the hospital for heart surgery BEFORE any heart attack occurred.

I didn't realize that heart patients suffer from depression after the event. From what I understand, it's hard to shake. [Here's a link to an AMA article about this.] Dad was no exception. He was hit hard. 

We lived close enough to visit some weekends and we brought Buster up to visit too. Both Kathy and Dad fell in love. 

We decided that Buster could be their dog. This was good for all of us. Buster really thrived with a stronger hand in training (Dad). He also was pampered and spoiled and loved on (Kathy) more than any dog I know. 

Dad spent his days building hurdles for a homemade agility course in the backyard. Buster loved to run (when he was young) and jumping a hurdle was added fun for him. Every time we visited Dad and Buster had a new trick. When I visited, my Dad would say, "Speak to Buster", before he would let me do anything else. 

It was fun to watch Buster work his magic on both parents. They went from "No Dog!" to "Not in the House" to "He sleeps in his kennel". 

I supported the kennel thing. I had crate trained him and he was too young to be completely reliable out on his own. Slowly, Buster was allowed on the furniture! He got his own space on the couch with a blanket and stairs and everything! 

I know my parents miss him. That's the hardest part about loving someone. 

Patient Beware!

I was going to write this when I was still angry. Angry isn't the right word. Maybe the correct word is incredulous. 

I'm sure my story is not unique, which makes me even sadder.

As you know, my husband has multiple health conditions that require seeing several doctors somewhat frequently. He sees an endocrinologist for diabetes, a neurologist for seizures and Alzheimer's, and a Primary Care Doctor. 

Our Alzheimer's Journey ~ 3/18/17

This was a hard week. You may remember he said "no" to the care companion. He said he liked his independence doing his own thing...

Jordan called me from the Brier Creek shopping center and said he couldn't figure out where he was or what he is supposed to be doing. I went to pick him up. He didn't remember where the car was (that is understandable), but he forgot that Jacob was in the car. We had help finding the car and poor Jacob.  

The next day Jordan was confused again. He thought he had been in an accident. Both Wednesday and Tuesday he didn't know who he was. I asked if he knew who I was and he said yes, you're my Kimberly. So I told him anytime he is confused to say: I'm Kimberly's husband. I hope that helps ground him. 

I stayed home for the rest of the week. As I spent time with Jordan he was able to tell some of the scary things that he experiences. He has gotten lost several times (I didn't know). What happens is he's somewhere familiar and all of a sudden nothing looks familiar. 

Also,  he is having visual "hallucinations".  He said he will look at a spoon (for instance) and all of a sudden it becomes moving black dots and changes shape, etc.

The worst is that he has been having moments where he relives moments from childhood and they scare the shit out of him. It's like he has repressed so many unhappy memories so long that they come flooding back and he can't keep them away. An example is he remembers is his father hitting him with a fist on the side of the head and Jordan falling to the ground. I'm not sure what other memories are coming up. 

It is clear that he can no longer be left alone while I work. 

Things I've done/put into place to manage/cope:

1. We sold his car. He was willing. I don't know how this will work next week when he wants to go somewhere. But I had to do it. I needed to minimize the chances of getting severely lost. 

2. Someone I've been working with has stepped in and increased their hours to help me keep an eye on Jordan. The key here is that they are not here as "Jordan's companion". He likes them. 

3. I am looking at Adult Daycare. 

4. We have a Dr. appt on Wednesday for meds.

Things I've learned:

Hallucinations are not unusual for people with Alzheimer's. This is also true of seizures. The smells that Jordan was having may have been seizures or may have been another type of hallucination. The treatment is the same, which is anti-seizure meds. We have Jordan on anti-seizure meds now.  

I believe Jordan is in stage 5 (probably 5.5) of the 7 stages of Alzheimer's. I'm hopeful that we will be able to get his depression under control AND reduce moments when he is afraid.

Our Alzheimer's Journey ~ 3/12/17

We had a pretty good week. 

Last Friday was the first day of Jordan's companion. They went to the art museum and saw the Ansel Adams show.  He was pretty tired that night but said he enjoyed the Ansel Adams show. 

Monday was day # 2. And Jordan pulled a "no show". He didn't like having a companion and decided that he didn't have to do it. Of course, the Health Aide was alarmed that Jordan wasn't home. When I reached him I said, "why aren't you home?" He agreed to go home for his day. 

Next day Jordan confessed that he doesn't want to have a companion. So, that lasted just 2 days. He said it was too exhausting and that he didn't want to make friends. --I actually get it. He's an introvert and this was just too much for him. 

I have to re-evaluate. 

The bad thing is I really hoped to use the help to get Jordan to some of his more routine appointments. I have already used 10 days PTO this year...and we aren't even through the first quarter. That's not meant to be a complaint...it's just that I have to balance it all.  

That's really all that's new this week. 

Life in the Puget Sound

View of City from the Space Needle's Observation Deck

I love that we lived in the Puget Sound area, the Seattle area. It is one of the coolest places I've ever been. Truth be told, I sort of miss it. The area is green all year long, hence the "Emerald City" moniker. I'll never forget the first time I saw Seattle. It was breathtaking. (Please know I'm not trying to sound cliché.)

I realize now that I really can't describe it in a meaningful way. I'll just say, a huge lake surrounded in the distance by mountains and in the foreground are evergreen trees. In one glance you can see some of the best in nature.

It's Just Part of the Story

I've missed coming here to tell my little stories. I know there haven't been real stories in a while. But, I miss coming in to chat.

I may have mentioned that my husband has Alzheimer's. It is early onset...it's rare that someone his age would have Alzheimer's.  In a word, it's been overwhelming. This blog is not about to become totally devoted to Alzheimer's or living with Alzheimer's and I do not intend for this blog to become an advocacy platform. This is simply my place to tell my stories in cyberspace.

Here's the thing...my stories include Alzheimer's and loving my husband who is living with it.

My husband used to be my most regular blog reader. I never wanted to put anything here that could hurt him in any way. This blog is no longer a thing he remembers, so I'm stepping out to talk just a little.

My thought is that if I talk about where we are in this condition that the fact that we are living with this condition will be just one thing about me and my life. You know? Like I'm right-handed, don't have a sense of smell and need reading glasses. Some things, of course, take up more space in your life.

We got the formal diagnosis almost a year ago. I've known something was really wrong since 18 months ago. I noticed little things over the last several years, but the things I noticed were intermittent.

On a totally different note, Jordan and I are watching the very first episode of The Big Bang Theory. It was funny from day one! 

Our Alzheimer's Journey ~ 3/5/17

Jordan continues to have good days and not so good days. --Actually, it's good moments and not good moments. One of the things that we need to figure out is his depression. This is so hard for him. I think it's clinical depression. And it seems to be an experience/feeling that perplexes him. I think that the sheer heaviness or illogical moments that the sadness overtakes him confuses him.

He does really enjoy time spent with people. Time with others seems to really distract him from his sadness.

We did the testing for seizures, which was inconclusive because they were unable to induce a seizure while he was there. --We also saw the neurologist this week (separate appointments). He said it is very common for the testing to give "false negatives". He said the only time the test is conclusive is when a seizure is measured. Seizures are random and often don't happen during these tests. The neurologist said that he is not ruling out seizures as a diagnosis for his episodes. If the episodes are seizures they are not "typical" but there are two things that make him think they are seizures: 1. The phantom smell he experiences as the episode begins and 2. The confusion/disorientation that happens afterward. 

So, all that said, we are treating him for seizures. The doctor put him on seizure medicine that we will ratchet up over the next four months.  And we took him off of Aricept/Donepezil. The Neurologist agreed that we haven't seen improvement with the med...so there's no reason to continue with it. And it is possible that it is causing some of the emotional problems he's experiencing. 

When we were at the neurologist Jordan said he feels depression every single day. I think this is where I need to turn my attention. 

I'm not sure how to describe his cognitive changes. This is probably more noticeable than memory impairment. Though the memory impairs a lot of his activities. An example is if he says "I need my glasses to read this label", he walks to his desk and if he doesn't see the glasses, he opens the drawer and stares. Finally, he says "what am I looking for again?" 

Things I've done/put into place to manage/cope:

1. I hired someone to come over and hang all of our pictures and some additional mirrors to help brighten the apartment. Jordan is very visual and aesthetics are very important to him. Just making the apartment pretty and homey gives him moments of happiness several times a day. My goal is to give him more happy moments and hopefully make the moments last longer and longer.

2. I will be contacting another of his Drs. to begin serious medical help for the depression. I feel this is critically important and time-sensitive. I discussed this with his neurologist and he said he is clearing Jordan for his other Doctors to aggressively use meds to help with depression.  --Before the testing, Drs. were unwilling to risk affecting upcoming brain tests. The neurologist said there is no longer reason to wait.

3. Jordan's companion started on Friday. This is a home health care person. The care plan is that every day the caregiver comes they will go on some sort of field trip. It can be sitting outside at Starbucks or going to museums or movies or the dog park. The list is fairly endless. On Friday they went to the art museum. They have an Ansel Adams exhibit. This was a good day for Jordan.

4. Rachel was adopted by a good friend of mine (Barbara) that lives in town. Today she brought Rachel to our house for a visit. We went to the apartment dog park so we could show Barbara Rachel's agility abilities with the agility course. Jordan and Jacob came to the park with us. Rachel knew Jordan and immediately went to him and leaned on him. It was special for Jordan to get to have this connection. 

I'm still trying to juggle keeping up at work. I end up needing to work late to get my work done (because of the days off I have to take for doctors visits). I have to figure out a way to eliminate the late nights. He is experiencing some of the sundowning symptoms that occur when evening comes. He is not wandering away, but he is anxious if he doesn't know where I am...which, he doesn't remember where I am all the time. When I call him during the day to check on him, he is so happy to talk to me...And he always says "where ARE you?" I'm hoping that increased activities will help.

This is all I really have for this update. Thank you all for what you do to reach out to Jordan (and me). 

Our Alzheimer's Journey ~ 2/20/17

Jordan is doing much better. His mood and spirit are good. His diabetes is coming into control which also helps him feel better in general. He is enjoying things and his confusion is less.

I think one thing that helps is that we pretty much acknowledge somewhat openly to each other that there is something different going on. Somehow I think that helps make it not seem so "big".

We found earlier MRIs that we took to his Neurologist. He will be comparing them to his current MRI to try to determine where changes have taken place. He/we have a big Neuro-Psychology visit in April. This is when memory tests, as well as cognitive tests and motor skills, will be tested. This will help determine if there are isolated parts of the brain that are involved. We will get the results and diagnosis and medical plan on May 6th. All of this is taking so much longer than I expected. But, I think we both feel better that things are moving forward and that we have Drs. that are taking this seriously.

On the whole, Jordan is happy. He has his sense of humor back and we tease and laugh every single day.

Our Alzheimer's Journey ~ 1/24/2017

January 24, 2017

My Brother-in-Law and his wife, as well as my Sister-in-Law, gave me support last week. It helped me as I try to navigate so much. 

Some additional background. After Friday (the 13th), Jordan had intermittent memory lapses...but none that appeared to devastate him. Examples of memory lapses are:  "Where is Danielle again?" or "I haven't seen (fill in the blank) in over a year. (but it was a month ago...)

He became quite sad when he thought he hadn't seen one of his siblings (or Danielle) in "forever". He had this feeling that he was "failing at relationships". --I think that is a result of a sense of time. Time is an interesting thing with this condition.  

I stayed home with Jordan on Monday, Tuesday & Wednesday. I went to work on Thursday & Friday. --His sister came to visit on Friday!

We have a new neurologist appointment this Friday. This one specializes in seizures. --It is not who I wanted, but Duke is incredibly hard to navigate.  Jordan has not had a seizure since a week ago (Tuesday). I'm not sure if I mentioned, but one of the things that could have contributed to the seizures was one of his medications. He's been on it about 18 months. Anyway, the Dr. took him off that med on 1/13/17. --Cold turkey. I'm sure the whole cold turkey off a medicine contributed to some of his overall unhappiness.

Oh, yeah, we had to deal with a broken car...that was parked in a shopping center for several days!! (They don't like that.) The first day of trying to take care of it (in sort of a misty rain) we called Road Side Assistance. They sent out a battery guy. --Even though I told them it didn't seem like the battery because we could hear the engine try to start. It was like a spark just wasn't catching.

Anyhow, the man that came out was VERY NICE. Trivia: How many people does it take to find either the engine or the battery of a Smart Car? (When we didn't get a manual because we bought it used). ANSWER: THREE!  One of us to find a video on UTube and the other two to do the 'heavy lifting'. Once battery and motor were found and two hoods were opened (front and back), the battery guy hooked up the charger and it confirmed that the battery is FINE.

Next day, we tried again. This time we were clear to the Road Side people that we needed a TOW. I called the dealer that services the car and they were ready for the car to be towed to them. --So, Jordan and I waited for the tow truck at Starbucks. Happy fact, we did not have to go to the dealer with the car. The TOW did it all.

Two days later: diagnosis:  FUEL PUMP (bad)...not sure all of the technical jargon...

Plus some other things were needed (but not as urgently). And, oh, by the way, did I realize it had been two years since the car had been serviced (?).  But...we just had it there in November, I say. He says, Yes, that was to replace a broken headlight and to get the annual car inspection.  --Ooops.  

Anyhoo...car is now all repaired. 

Things I've done/put into place to manage/cope:

1. We went to AT&T (which was a surprisingly good experience) and got new phones. He has a Galaxy Edge and I have a Galaxy (no edge).  --More on that in a minute.
2. I ordered both of us an Android Wear Smartwatch that is paired with our phones. 
   • The idea is that even if he doesn't hear his phone, the watch will vibrate and alert him to check his phone. 
   • Even more important, I WILL NEVER again (hopefully) miss a call from Jordan. When he has tried to reach me and I missed the call (work) it has caused him undue pain (not sure of my word choice). When he calls, it is often because he's confused and he needs a touchstone. NOW, I should never miss one of these calls.
   • RESULTS:  I've been able to get to all of his calls to me AND to calls being returned from Drs., etc.
3. Jordan is affected by Seasonal Affective Disorder. In Durham, we have had lots of gray sky days which are hard on Jordan. Here's what we've done: 
   • I bought him a pair of "safety glasses" that also reduce glare and gives the impression of more brightness (the glasses block out blue colors of the spectrum). Got those next day from Amazon. He wore them all day for a few days. Now he wears them intermittently.
   • We went shopping at a local store for things to brighten up our home. We bought several bright pillows and a bright rug.
   • I ordered him a Light Therapy Lamp. It is one that has a high success rate in treating SAD. It came yesterday. It has helped.  Though, that is probably an immediate sensory response to additional lighting and maybe warmth. It will take a few days (weeks?) to get the full effect.
4. We have had several experiences where Jordan has been able to engage with other people, who have really touched him and made him happy. Talking to Jordan's brother and mother on Saturday was huge.
5. His sister calling last week and coming to visit last Friday was huge. They went to lunch at a restaurant Jordan hadn't been to.  --He'd been to one of the restaurants in the chain, but going to a new place is good for his engagement to his environment. They went to a MOVIE (need I say more...except..hotdog & popcorn). They topped it off with B&N (i.e. Starbucks coffee & cheesecake). All of his favorite things happened in ONE DAY!
6. On Thursday (a blue sky day), I called Jordan and asked him to take the dog to the dog park in our complex. He did & spent quite a bit of time in the sun. (yay).
7. Also on Thursday, I arranged an Uber to take Jordan to the shopping center for a LATE LUNCH. --He chose another place he (and I) had never been to. --I joined him after work (it was a LATE LUNCH). We had a light dinner and he had a beer.  He enjoyed this place.
8. Sunday, we had a training session for Racheal.* This is a different type of training. It is called "Social Outings". We show up with our dog and the trainer and several other people with their dogs. The trainer walks us through some leadership exercises...to prepare the dogs to pay attention when we get to the "main event". The main event was going to a yogurt shop and eating on the patio (with all of our dogs well behaved at our feet). Jordan told me he thought it was fun (so did I). We have three more of these classes.

*Racheal: A story in herself. I spelled her name this way to include the word "heal".

I'm interviewing an agency to help me with the normal things I'm having trouble balancing. --For example groceries...This may take some of the burden off of me of keeping us fed. There are more things I will likely get their help with. Jordan's desire (ability?) to do some of the home "chores" that he used to be so good at has declined. --I am looking for ways to compensate for that.  That may sound weird that I need this type of help...but, when I'm not at work, I'm trying to get Jordan into a Dr.'s visit OR trying to make sure he is getting what he needs/wants to stay "him". 

Because I have so many weird days away from work...I get behind and have to manage that as well.  --I get PTO, but that doesn't offset the work that I'm still responsible for and the work that I'm evaluated on...We need me to continue doing well at my job.  --It's all about balance.

As you can probably hear in my tone...both Jordan AND I are feeling much more optimistic this week.

Racheal's Day Out

Today, Jordan, Racheal and I went to our first "Social Outings" training. I'm always a little anxious when I try something new, but this was a really rewarding experience.

Racheal has been a challenge. This class (along with classes we've had with other trainers) reminds us that Racheal is full of potential. I tell her that at least once a day.  

Our Alzheimer's Journey ~ 1/19/17

Jordan's condition definitely has ups and downs.  We've had another difficult week. Jordan had another dizzy episode and confusion on Wednesday. It was bad enough that I left work to go get him. I took him to the emergency room...I didn't know what else to do.  

I had thought his "episodes" were over. But, like I said, they are back. After the episodes, he feels hopeless and is seriously depressed. His deep depression confuses him. They did a CAT scan in the emergency room which revealed "significant" atrophy. The emergency room Dr. said it looks like his disease is progressing super fast which is probably what is causing the episodes of confusion and depression. He did not think he had experienced a seizure. The Dr. said that because the brain seems to be changing more rapidly than "normal" Alzheimer's that there are going to be bursts of distress.  --This is his opinion based on an isolated assessment. The Dr. required follow-up was to visit with Primary Care Dr. within 24 hours and visit with Neurologist within 48 hours.

Well, we were able to see his primary Dr. She is super helpful. She is not ready to rule out "seizures" as a possible diagnosis. He is scheduled for seizure testing on Feb. 27th. This was scheduled when we met with his new neurologist. After the emergency room, I tried to get in with the neurologist. --The soonest we can get in is 3/2. --And that is with me explaining this is follow up for an emergency room visit.  

I sent an email to his neurologist asking for an evaluation of his meds and begged his consideration ASAP. I think we need to take him off Donepezil. These dizzy and nausea AND depression issues are known side effects to this med. They are not "typical" side effects...but nothing Jordan is experiencing with this illness is "typical".

His depression is significant. Danielle came for a visit this weekend. His depression abates when someone is here to "play" and distract him. But as soon as she left, he was depressed again. None of his Drs. will consider new meds for depression until the seizure testing is complete. 

The emergency room Dr. said to "supervise Jordan closely". I may have the wording wrong. --But I took that to mean don't leave him alone. I have been with him since Wednesday.  Tasks are becoming more difficult for Jordan. 

Things I've done/put into place to manage/cope:

1. I hired a "personal assistant" for three hours a week. She has come twice. She is fully aware of Jordan's condition. She helps me with light work around the apartment (including laundry). Jordan no longer seems to be able to do some of the activities that he used to do (including laundry). She also runs errands for me. One of the benefits of having her is that during the time she is here Jordan gets to have interaction.  --He tells me he is incredibly lonely.

2. I have interviewed for Home Health Care to start ASAP three days a week. We've had the nurse intake. I've designed a care plan that includes lots of outdoor and out of the house interactions. Jordan goes back and forth on how he feels about this. Sometimes is "somewhat" excited" and other times he feels that I'm treating him like a "baby" or something. 

3. We made the difficult decision to give up the Service Dog Racheal. Long story short...I was scammed. It was an expensive scam. I'm heartbroken. I may be able to give more details on Racheal another time. It's too much this time.

A Few Happy Thoughts

I watched the Golden Globes last night and was surprised by how emotional I got in some places. Like, Ryan Gosling sending his love out to Eva and dedicating his award to her brother. The sweetness of it touched me.

And Meryl Streep's speech was excellent. 

In other news, Racheal got a new toy that she has completely annihilated. She's quite proud.

It's been so cold that Jacob got to wear his new sweater.

Speaking of sweet Jacob...he is going to be the next one to get some intense re-training. He's having possessive issues. It's hard being the only dog for 8 years and then having a giant sister come into your life.

These are a few happy thoughts to get us started in the new year.