A Moment of Clarity

My mother in law had not had much clarity for several years. It was Christmas 2008 since she had recognized me.

ALZ had stolen her memory and her emotion. Sure she would get frustrated and angry, but she didn't show much emotion other than that. She hadn't cried or laughed. In fact, she was reduced to the equivalent of a 5-6 year old in mental and emotional capacity.

There were two moments of clarity during these three weeks. One for me and one from her.

One evening, my sister in law, niece and father in law all set making funeral plans by her bedside. She was awake and non verbal. It became very clear to me that she was listening. The problem was that she wasn't a 75 year old woman who was coming to grips with her mortality laying there. She was a young child laying there.

Can you imagine talking about a funeral in front of a 5-6 year old? I imagine she was scared and confused.

I began to get very angry. Inside I was yelling stop! It didn't feel right. It wasn't right. It had to stop.

The Wednesday before she passed away, she was laying in her bed looking at me. I was holding her hand and running my hands through her hair. She looked at me and smiled. That wasn't out of the norm. She smiled at everyone and told everyone she loved them. It was her thing.

But this smile was different. Just my husband and I were in the room. I told him to look at her, which was hard for him. Her eyes looked like someone was in there.

This was the day after the funeral planning ordeal. I instantly started to think about how I would want people to treat me. Treat me like I'm loved, human, confused and like you care. Treat me like a human. A real person.

So, I said the first thing that came to mind. I asked if she would rather be camping than laying here. She loved camping. Her eyes swelled and tears ran down her cheeks and she nodded yes. She had not cried, showed emotion. What was this?

I said her that I thought she would rather be camping and spending time with her kids. Big tears and big nods. I said you love your kids, don't you? Big smile, big tears and huge nod.

In that moment, I had her. It was all her and only her. She was there. She knew who I was, who Kent was. She knew who her kids were and she wanted to be with them. She was sad. I told her that she was going to be ok and that Jesus would take care of her. One more nod, more tears and then she closed her eyes.

After that, she wouldn't open her eyes much and would never communicate again.

I wish I had gotten it on video to share with the family. In that moment, you never imagine it'll be so brief or the last time.

Not that I am complaining, but it seems so wrong that I got her last moment of clarity. I wasn't one of her kids. I wish they had gotten it.

I suppose I got one more moment of clarity for myself after that day. It is a privilege to love someone, to share your life with someone who is so loved. I feel that way in my own relationship now. I want to love my husband as much as his mom did, so unconditionally. I want to honor and respect the love she had for him. I want to remind him of how much she loved him.

Funeral and Family

I have learned that when there is a major death in the family, one of two things happens. Either the family comes together or they fall apart. Mine, fell apart. This one, fell apart.

Each person has their own ideas and that never works when everyone is in high emotion. Some siblings planned, while others fell apart. It was a mess.

She looked lovely. She looked a lot like she did before she got sick. That was nice. Probably the nicest part of the service. She was well loved, it was a full house.

Unfortunately, nobody offered any personal info about her to the guy who did the service. So, it was a very impersonal service that didn't do justice to the person she was.

I did my best to stay out of the way and support my husband. I failed at times, but tried.

It was a trying, emotional time. Nobody was ready to let her go.

She had been sick for several years. She had known most of her family for at least six years or longer. We had been grieving and wanting her back for a long time.

I selfishly had wished for this day for a long time. Not because I hated her, but because I knew she would never have wanted to be the way she was. I knew she would be angry with what ALZ had done to her.

The day of her funeral, I had to most guilt I have ever felt. I wanted her back. I wanted my husband to have more time with her. I wanted her to bring everyone together. I wanted her wisdom and love. I wanted just one more hour with her, one more day.

As they wheeled her casket down to the car, it became so final. The finality that death brings here on earth. She was gone. As I saw the casket, felt the finality, my knees began to shake and buckle. I turned around and my friend, Tracy, was there. She grabbed me in a hug that kept me from falling to the ground and held me for what seemed like forever.

The graveside was short and sweet. It was there that I saw and felt the love of so many. In fact, I think there are so many who love this family more than they love one another.

We finished off with the meal and headed back home.

Hell Continued

The next morning, we asked the doctor if giving her fluid was helping her or hindering her. He said it was keeping her alive, but for what? She would not recover.

Throughout this process, her blood pressure and heart rate were dangerously high as well. We were actually a little surprised that she had not suffered a massive stroke or heart attack.

That morning, the family decided it was time to take meds and fluids away from her and give her pain meds only. She had very little ability to respond and slept most of the time. She had developed apnea and snored loudly.

When the fluid was gone, we expected her to go quickly. That wasn't the case. She was a tough old bird. Healthy in most ways. Strong heart and in her right mind, had a strong will to live.

His sister, dad, niece and us all stayed vigil at the hospital, never leaving her alone. We made sure she stayed clean and the nurses treated her well. Some didn't. We held her hand and put wash cloths on her head as fever set in during the last days. We used chapped stick to keep her lips hydrated as her mouth dried out.

We were miserable. It was hard watching her slowly die. Everyone of us dealt with guilt and anguish. Everyone questioned if it was the right decision, even if briefly.

The last Wednesday, we got a call at 4 am telling us the time was near. When we got there, we heard the "death rattle" and we thought they were right. The minutes and hours ticked by. The death rattle is a mechanical sound that haunts you for a long time. It doesn't even sound like it is coming from her.

She did finally quiet down, but stayed strong. Over the next day, her breathing became more shallow, fever increased, BP and pulse both began to fall.

That Friday, we had made a plan to take some time away and go to KC. Kent had an interview and we wanted to look at houses. Also, we had to take some time here and there to catch our breath and get a break from the heaviness of it all.

Friday, a little before noon, his sister called to let us know she was gone.

Weeks 2-4 of Hell

When his niece called, she let us talk to the admitting doctor. He told us him mom had a 5.5" brain bleed. He gave her a minimal chance of survival. Saturday morning, we were off.

She had been diagnosed a few days earlier with a UTI. Her condition deteriorated rapidly and within a day, she could no longer walk or talk. That Friday, she aspirated on even the smallest sip of water. At one point, she started having seizures. They took her by ambulance to the hospital. Not the typical signs of a UTI, they did a CT scan, which revealed the brain bleed. 

If you don't know already, brain bleeds are a common thing for people who have had alzheimers for a long time. Their brain atrophy (shrinkage) causes the blood vessels to become brittle and not supported. They break and bleed between the brain and skull. Smaller ones resolve themselves. This was not small. 

A 5.5" brain bleed was big enough that the pressure pushed her brain past it's center point, causing the seizure. The doctor was certain that she would never make it through surgery with any quality of life left. 

We expected her to be non responsive when we arrived Saturday night. Not the case. She had her eyes open and was mumbling. We also found a family confused and angry and torn apart.

The next day, she began speaking words and assisting the nurses who moved her. We weren't seeing a woman close to death, but one who was improving. Talk about emotions. Wow. Nobody knew what to think, although some siblings felt there was some crying wolf involved. 

They had continued to treat UTI with antibiotics. She continued to improve and appear to be back to her verbal baseline. By Monday morning, the doctor had the family convinced that she was improving and was ready to start physical, occupational and speech therapies. Monday evening, she was eating thickened liquids and ground foods.

Tuesday and Wednesday, she sat on the edge of the bed and stood up with assistance. The doctor was still clear that she was in end stage ALZ. The family had to decide where she would go when she was dismissed in a few days. Hospice care vs. home care vs. nursing home. It was a point of contention amongst everyone.

His dad wanted her home, but it was obvious that there was not enough physical care. It was also hard for some of the family to wrap their heads around the 'end stage' part of this. He believed she had less than six months and some couldn't envision that.

Soon, that decision was made for them. Wednesday night, she took a turn and one she wouldn't recover from. 

Despite the doctor's opinion, the UTI was not her biggest problem. The brain bleed was. She stopped assisting with moving. She stopped responding to verbal command and conversation. She was more lethargic.

Thursday, my husband spent all day with her. He kept texting saying that he didn't think she was just having a bad day. He thought she was dying. He fed her jello and cried the entire time. That night, I tried to feed her jello and she aspirated. The nurses and doctors all decided that she needed to stop being fed. 

An on call doctor came in that night and had a very serious talk with all of us. He said that he believed the brain bleed was taking it's toll on her and that she would not recover. He said that she was going to deteriorate until she was gone.

Four Weeks of Hell

We were supposed to take a week of vacation the first week of July to visit Kansas. We didn't because my husband didn't feel like he could get away from work. So, we planned a weekend away over July 4th to Amish Country in Ohio.

A week before that, we learned that our checking account had been wiped clean. Some creep had skimmed my debit card number and stole all of our money. Talk about feeling violated and drained emotionally. After all the crap we went through with family and fraud, it was hard. 

We took our mini vacation anyway and had a relaxing three days. We walked around some Amish communities and relaxed at the hotel. 

When we returned home, the interviews continued and we started making lists of things we needed to do to get done to put it on the market. There wasn't a lot, but some clean up and organizing to make the house look more presentable. 

The Friday after the fourth, we got a call we expected to get sometime in the next few years. 

Kent's mom had been hospitalized.

Contracts and Change

Even though we tried, Ohio never felt like home to us. We knew going in, we had two years to fulfill my husband's contract. That contract expired in early May.

In late April/early May, I spent two weeks visiting the KC area. It was a lot fun, but a lot stressful. Visiting KC was always a priority, but we were miserable. There was never enough time to do everything we wanted and see everyone we wanted. Even the two weeks I had here wasn't enough.

Returning home, I told my husband that I was ready to be home. It's too stressful trying to get everything in even during two weeks.

But, we both were unhappy. I don't really need to go through all the reasons again. It's easier to just say Ohio never felt like home and we never felt a strong connection to the people. The people were great, but it isn't a place for outsiders.

By the end of May, my husband was a hot mess. He was sleeping only a few hours a night, waking up stressed over work. He started having signs of an ulcer and regular stomach pain. He was grouchy and shared daily complaints of his bushel (my term, not his). It was obvious that he had reached an all time low in his job.

In early June, he decided it was time to find something different. We knew with his skill set, we would have to move to find another job. I gave my boss a heads up and he spent night after night applying for jobs.

It seemed like there would never be any interest in him. But, after a few weeks, requests for interviews started rolling in daily. He spent lunches and hours after work on phone interviews.

There was disappointment. Some phone interviews resulted in a definite no or no response at all. There were some he definitely didn't want. He applied and interviewed for jobs all over the nation. Jobs in Colorado, Michigan, Minnesota and near beaches appealed to me. Jobs in New York, California, Arizona and near beaches appealed to him.

We both agreed that he should apply for everything. I kept telling him, "if you throw 100 stones, you'll eventually hit something." So, he did. Even back in KC.

We had some strong feelings about returning home. We didn't want to, or at least that is what we both said to each other. We knew we both had some family issues that we weren't ready to deal with and staying far away seemed like the right thing to do.

By July, it was obvious that he was likely going to have at least one offer come in and we would be moving.

Between July 1 and the first job offer, a lot of life happened and things changed in big ways...

Time to Catch Up

Back in April, I decided it was in my best interest to close this blog and move on. A lot of my decision was about holding a job and needing some anonymity from the people I worked with and for at the time.

Starting a new blog was far bigger of a change than I had thought. I didn't like it. I had followers, but it didn't feel right to me. After a few posts, I abandoned the blog and kept to myself.

In that short time, there has been so much change in my life. A crazy amount of change.

We have moved, both left our jobs and started life over again. We actually have moved back home. So, it felt right to return to my home here in blogosphere.

And, since I'm currently sitting in a hotel room, there's no reason to not get started with a little of what's been happening.