Thursday, August 31, 2017

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 that "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 of 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.

Wednesday, August 30, 2017

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 was 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 instruction 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, like you. 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 judgement 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 is 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 was 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.  

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 should slow everything down. The doctor isn't happy that I'm letting him drive.  --But I insist it is okay for now. 

Tuesday, August 29, 2017

Our Alzheimer's Journey ~ 4/23/2016

We have a preliminary diagnosis to be confirmed by 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.   

Monday, August 28, 2017

Our Alzheimer's Journey

January 14, 2017

Jordan's condition has progressed REALLY fast. There's a huge difference from just a week ago. HIs "episodes" that may be something like epilepsy have intensified. Two nights ago he had them in his sleep. He had no less than 5. He had maybe 4 episodes yesterday and several today. This morning he had lost a huge junk of time (he feels like he just woke up from amnesia.) He is incredibly sad. 

We had a really good Dr appointment today. He's had like three episodes this afternoon...but nowhere near what he had this morning. 

I realize I'm going to have to do something so that he is not alone when this happens. I may have to take a leave of absence from work. That might be too drastic. I'm the only income. But, I have to do something 

His car is parked at the local shopping center because it wouldn't start earlier this week when he was ready to leave. We went back and it still won't start. Last night I asked Jordan what we should "do about the car". He said SELL IT! As soon as it starts. I actually think that's right too. Safer. But I want to make sure he doesn't feel stranded at home. And of course he can't organize UBER, etc. 

This morning when I asked him if he remembered that he wanted to sell the car, he panicked and said No. He did not remember and then it brought all sorts of emotions about losing his mind. He was inconsolable. Sobbing. Heartbreaking. 

The Dr. today has two additional neurology specialists he wants us to see.  

If Jordan has another episode like today...I'm thinking of going to the emergency room. 

I am incredibly overwhelmed and scared and sad too.

Sunday, August 27, 2017

Documenting Our Alzheimer's Journey

I know I promised that this blog will not become devoted to Alzheimer's. And I still promise. 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. 

Friday, August 18, 2017


With this move to Wilmington, we downsized...again. I know I talked about the last two 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 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 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.
Home, Small Space Living
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.
living room, new couch, small apartment
On moving day, our new living room included two side chairs one side table and a foot stool. Of course, we also have the credenza for the TV.  --But sitting wise, we had very little.

Monday, August 14, 2017

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 the 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.