Saturday, September 16, 2017

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.

Friday, September 15, 2017

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. 

Thursday, September 14, 2017

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).

Wednesday, September 13, 2017

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 walk abouts (him leaving and me going out to find him or follow him). 

The last week I think we were down to one walk about. 

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 pocket book 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. 

Tuesday, September 12, 2017

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).

Monday, September 11, 2017

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). 

Sunday, September 10, 2017

Our Alzheimer's Journey ~ 5/6/2016

Saw neurologist today. Everything does point to Alzheimer's. He said the only way to know for "sure" is a brain biopsy...which is too life-threatening to do. (Of course). We will be starting new meds tomorrow that should slow the disease. It may even give him a boost. This med is documented to slow the disease by 18 months. That doesn't mean that at the end of 18 months he will drastically decline...but it means that on a scale of 1 - 100 (1=good); If we would be at level 7 in a month or so....he likely won't get to 7 for 18 months. ---That is pretty good really. Since we are starting somewhat early...it should slow everything down. The doctor isn't happy that I'm letting him drive.  --But I insist it is okay for now. 

Saturday, September 9, 2017

Our Alzheimer's Journey ~ 4/23/2016

We have a preliminary diagnosis to be confirmed my the neurologist. The diagnosis is dementia and specifically, Alzheimer's. We were there from 8:30 until 2:30. The testing was very thorough.  At the end of the testing (and after a lunch break for all of us) the doctor discussed her findings and diagnosis. She was very gentle and checked in with Jordan several times to see how he was taking it. It's a hard diagnosis to hear.

Part of that meeting included hearing some next steps. She recommends we get in place a Power of Attorney, including a Medical Power of Attorney. She expressed that this is pretty urgent.   

Friday, September 8, 2017

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 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.





Thursday, September 7, 2017

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 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.

Wednesday, September 6, 2017

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. 

Tuesday, September 5, 2017

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 the 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). 

Monday, September 4, 2017

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. 

Apartment Living
Apartment Livng



Sunday, September 3, 2017

Our Alzheimer's Journey ~ 2/20/17

Jordan is doing much better. His mood and spirit is 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 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 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 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 was 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 jargin...
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 say's, 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, which 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.