Marge as a teenager

Marge (left) as a teenager. With her oldest sister.

Security

Hard to believe it's been three years since Mom passed away. Funny how memories work. I come across something while rearranging stuff and flash back to whatever that thing triggered. As I have said before, you don't appreciate how comfortable and safe you are as a kid when you have the consistency of a home to come back to every day. It's not the quality or cost of the things that represent home, it's what you come to know and expect.

I mention my comfort zone when I was a kid, but it's obvious Mom also preferred her consistency. She was always uncomfortable outside her comfort zone. I guess today she might have diagnosed with a version of agoraphobia as I think back to her behavior whenever we were "out."

I just saw the little pillow they gave her to hold on to at hospice. She acted like she was afraid when she first got there (before she faded and slept most of the time). Not only was she outside her comfort zone, her memory was fading so there is not idea what she was thinking. She clenched that little pillow like it might protect her from the unknown.

Mom's security pillow

Memories are good things, even memories of unpleasant things. They provide some context to why I am who I am today, and what matters to me. Thanks again Mom.

Christmas

It has been more than a year since Mom passed away, but holidays always bring up reminders. Fond memories of life at home as a child growing up. Marge was mom and what counted is that mom was always there.

Roles reverse when you become an adult, especially when dementia accelerates to the end. Helping your mother with basic hygiene and repeating answers to the same questions over and over again is very uncomfortable. But mom was always there for me, doing her best to deal with me as an infant and toddler without any support network, husband, or family support. Yet I never saw any flaws, weaknesses or omissions. And I appear to have developed into a "normal" adult.

When mom is gone and Christmas comes around my mind digs up old memories of Christmas. We may not have had much but I had a home and I was loved. It's easy to see those important values when looking back. Unfortunately it's too easy to dwell on the superficial in the here and now. I can't remember the gifts I got as a kid at Christmas time, but I remember feelings of security - life was good, Santa came, we had our apartment and food to eat. Mom made all that possible. How can I ever pay that back as she slipped into dementia in her final years while I am in perfect health?

Life is definitely a cycle from total dependence to independence to total dependence in hospice in the final days. Merry Christmas.

I can't taste anything anyway

A sign of the decline that may or may not have been real. Marge never was much of an eater. She would graze more than eat sit down meals. In fact a common statement was "I don't see how people can eat so much."

In the last couple of years she refused to eat even her favorite things like cinnamon toast and sweet snacks. (When she was healthy, dessert was her primary course at every meal. We'd go to a restaurant for dinner and order meals - she'd order a piece of pie or a milkshake - period.) Since she was losing weight we got her to start drinking Boost - lots of calories and plenty of nutrients.

This is where she would contradict herself. She claimed she wasn't eating because she couldn't taste yet when she drank her Boost (with a straw - always with a straw), she would offer it to me or anyone else, "want some? It's real good."

In her last few months she was refusing to eat. She would drink coffee and Boost. Always Boost with a straw. She didn't eat or drink a single thing for her last few days in hospice. She would suck on the wet swab on her lips - that was it. Depressing.

Happy Mother's Day

The first Mother's Day without a mother, since she just passed away in February. So used to at least making a phone call, or better, going out to a restaurant.

Of course my wife is a mother, and so are my daughters. There are mothers everywhere. But we each have only one birth mother, and now she's gone. You wouldn't think a man in his 50s would feel the loss of his mother after living independently since I went into the service as a teenager, but the feeling is there.

Still thankful for all she did raising me. Thanks mom.

The Slow Decline of Dementia

Mom's ordeal with dementia ended more than a month ago. As I review events in our lives, I come across more early indicators of dementia. Of course, it starts with what seems to be routine forgetfulness - "why did I come in here?"

But there are also changes in personality that are cues that are visible in hindsight. Mom became more emotional about 2-3 years ago. She started hugging and saying "I love you," which she had never done in the previous 80 years. It was nice to think that she was finally becoming more attached to people, but it's also possible that behavior was just part of the rewiring of her brain that was going on. It's more comforting to believe it was the former and not the latter.

After the "why did I come in here" there were incidents with tea kettles boiling dry, forgetting how to operate the microwave, and changes in diet.

Mom was always thin, but as dementia progressed, she stopped eating as much of the few things that she always liked. She started that decline by simply eating less. Over time it got to not eating it at all. In fact, she started exhibiting anorexic behavior, getting down to ~80 lbs (5' 4"). This led her doctors to prescribing drugs simply because their side effects were increased appetite. Within the last 3 months of her life, even those efforts didn't work and she survived on several bottles of Ensure each day. At least she liked those and didn't protest when they were brought to her.

I'll write more about the food issues in future posts.

Dementia isn't Alzheimers

It's a good thing that so much is being written and discussed about Alzheimers disease. My mother didn't have Alzheimers. She had vascular dementia. Apparently it is possible for a skilled geriatrician to determine one from the other through testing like those in the Merck manual linked from my first blog post on the subject.

Vascular dementia is caused by mini-strokes. Apparently these are imperceptible. My mother suffered from vertigo and would sometimes get dizzy and pass out, hitting her head on the ground, or worse. When I was a kid I vividly remember her falling in the kitchen and hitting her head on the handle to the bottom drawer of the stove. It broke and she was lying in a pool of blood. This was before 911 so I ran for a neighbor. I can't remember what happened from that point, but I can still see my mother passed out on the kitchen floor in a pool of blood.

There were other dizzy incidents over the years, and I suspect they all contributed in some way to her vascular dementia. In any case, the outcome from Alzheimers or dementia is the same -- your brain forgets how to keep your systems running and lets them shut down. How long that process takes is what makes each situation different, and all of them difficult for caregivers and family.

Dementia Accelerates at the End

I've written that my mother has already passed from dementia. Cause of death is shown as cardiac arrest, but she didn't have heart trouble. Her brain forgot to tell her heart to pump anymore.

It's amazing how quickly things go at the end of a "demented" life. Here is the actual chronology for my mother.

For the past 9 months she lived in an assisted living facility. On 1/18 I got a call that the facility called a homecare place. After a phone call I learned that mom's doctor recommended to the facility that they contact the homecare company.

1/21 - I met with the representative of the homecare company and learned about hospice, and the fact that mom's doctor had diagnosed "failure to thrive."

1/27 - Mom was moved to the hospice facility by medical carrier. I was told to meet her there. She was a wreck. Deathly afraid and holding on to the bars of her bed with both hands while curled in a fetal position. She had no idea what was going on.

1/29 - I started moving her furniture and belongings from the assisted living place since she would never be going back.

1/30 - I finished moving her things. My daughter came out after a 6 hour drive to spend time with her grandmother and me at the hospice.

1/31 - Time together with mom at hospice. Daughter had to go back home to take care of her daughter.

2/1, 2/2, 2/3 - I stopped at the hospice for a few hours every night after work. I was never comfortable about leaving because I couldn't know if that would be the last time I'd see her alive.

2/4 - 10:30 AM - Doctor at the hospice called me at work. Said mom "looks different today. I think it's only a matter of hours." I immediately went there.

2/5 - As I fitfully tried to sleep in the recliner by my mother's bed, I woke up at 1:45 because her noisy breathing had stopped. As I wrote earlier, the nurse confirmed shortly thereafter that she "was gone." I sat by her bed for the next hour and a quarter talking to my mother's body, assuming her soul was already off to a better place. While still on her bed, I kissed her on the forehead, said goodbye, and went home.

More to follow...

May she rest in peace

My mother's battle with dementia ended early this morning at 1:45 in the bed she had not left during the week she was in hospice. Fortunately I was there, fitfully trying to sleep in a recliner next to her bed. Her days in hospice were not easy for her.

The goal of hospice is to alleviate pain while the patient succumbs to her disease. They did that well, resorting to morphine injections every 3 hours the last day. Despite the pain relief, and probably due to the dementia, she moaned at each exhalation. In fact, it was the break in that rhythmic pattern of moaning that awoke me.

I listened for a few seconds because there had been short periods of apnea in the past, but this time breathing wasn't restarting. I reached over to touch her face and it was cool. I pushed the call button and a nurse arrived within 15 seconds with stethoscope in hand. She heard a faint heartbeat.

I stroked Mom's hair as we both looked at her and at the next check, the heartbeat had stopped. The nurse closed Mom's eyes and that was that.

I'll write more in coming days about the whole dementia experience. It helps me, and hopefully it will help others going through a similar process. One thing I can say for sure - no matter how much you prepare, actually going through it is not easy.

At least now she no longer has any pain or confusion...

Hospice and Dementia - Heading to the Exit

I write this in hospice with my mother who has hours to live. Her dementia has gotten to the point that all things are winding down and the end is in sight. It has not been a pleasant process. My fiercely independent mother is now incontinent and totally dependent on others simply to change position in bed. There is no interest in eating, that started quite a while ago. She can no longer speak.

I studied what I could about dementia so I knew what was coming. But when it's your mother lying there gasping and quivering, it is almost painful to watch. Her hands are warm even though they are bonier than they were before when they were always ice cold. We can tell she knows we are here.

My mother spent most her life without any prescription drugs. At 80 she had no prescriptions. Now, in the past several months she is on so many things that I can't keep track. Thank God for Medicaid.

In the coming weeks once this ordeal is over I will go back and write more about the experience.

May she rest in peace -- soon.