Dementia Part 5

Dementia Part 5

   My mom was finally living in a place that was safer for her.  She had people to make sure she ate properly and on time, and to make sure she took her meds.  That was such a relief to me!  I still got the odd phone calls, but she was someplace safe.  I was able to spend more time at the Corona Renaissance faire (that I work).  I had been limited to only an occasional day during the run.  And I got to visit my daughter and attend Comicon for the first time!

   But it wasn't perfect.  The staff, while truly caring, had real communications issues.  And, as had been predicted elsewhere, some of mom's stuff started vanishing,  The coffee cup with mom's name on it was one of the first things to vanish.  The staff dealt with clothing vanishing by giving mom stuff that wasn't hers-probably from some former patient.  There will be a reckoning when mom finally leaves.

  Not perfect, but ok.  Mom decided, after the first week that she wanted no part of the activities, or the dining room.  I think she was appalled by the other patients and didn't want to see herself as one of them.  So she mostly stayed hidden in her room, until the need to walk came upon her.  The staff got used to mom walking the hallways.

   The one thing I really, really did not like was the doctor that mom was assigned.  Places like the convalescent hospital mom was at usually have young doctors that show up twice a month or as needed.  It gives those doctors some money while they are building their practices.  Unfortunately, the doctor that mom was assigned was the man we had nick named "Dr. Ass" when mom had been in the hospital a few years before.  A UTI had gone toxic, which eventually led to her needing a heart pacemaker.  Dr. Ass wanted to send mom home the second day, even though she was not lucid, vomiting, and with diarrhea.  Mom's heart wouldn't settle down at that point, so she got the pacemaker installed.  I think the heart doctors, as well as some of the senior hospital staff had words with Dr. Ass.  I was thinking seriously about a medical malpractice suit and the hospital knew it.  So yeah, back with Dr. Ass.  I made sure that man remembered who mom was.  Mostly he's been ok.  A bit of fear of me is a good thing.

   In the second month mom was there I was contacted by the social services person on site.  It seem Medical had decided that mom was "too healthy" to be at that facility and I had to find her a new place to live.  Or else they would start charging mom the full amount.  This social worker was from hell.  To say she played hardball with me was an understatement.  I left her office crying.  I couldn't even visit my mom that day.

   The social worker had given me some leads of places to look, placement companies to contact, including her personal choice.  I spent every free moment I had the next few weeks trying to find an alternative.  Mom could indeed afford the social workers choice (with no money left over to pay her bills), but it was almost a half hour away in a run down house.  And there was gang graffiti on the sidewalk in front of the place.  No thank you!

   I went through several placement companies.  The result was always the same.  Nice multi room houses with nice people running them or re-done apartment complexes but the cost was always more than mom could afford.  She has no other source of income apart from her social security.  I would have to make up the difference.  And I just can't.  

   I kept looking and kept going through placement companies, though at a slower pace.  Despite what the social worker had said, the law states that where she is at cannot just kick her out-mom has to have a place to go to.  Eventually the social worker from hell was transferred and the new one was more understanding.  The site did eventually start taking all of mom's social security check every month, and giving us a bill as well.  But she has a safe place to live.

   As we had expected, with the move (as with any change for dementia patients), mom did have a drop of skill levels and memory.  Not too bad at first.  Her short term memory was now down to about 15-30 minutes and she was starting to loose some of her long term memory, though most of that could be accessed with prompts.

  In the 3rd month she had an A Fib episode tied to a urinary tract infection.  I was at the movie theater when that call came in.  I told the Center to send mom to the ER (what they wanted to do) and I would meet them there.  Many, many hours later mom was released and sent back to her new home.  New meds and the center learned to watch mom for the UTIs.  That hasn't happened since.  

   Mom got better from the UTI, but as usual, another drop in memory, etc.  More and more mom was choosing to walk the hallways and not taking part in any of the planned activities.  Definitely a subconscious response to her environment.

   Finally, about 5 months in, a found a company that could actually help mom and I.  It turns out that CA has a program that will help medicare patients fund appropriate housing for poor seniors in need of care.  Glory Hallelujah!  Where was this information a year ago?  I was back to checking more locations-this time I was looking at places with dementia units.  They tended to be more expensive, but that really is the care mom needs.  I found a place about 20 minutes north of me, in the city of Downey.  It's a small dementia unit inside a senior housing unit.  It meets all the parameters I had and I liked the staff.  So with the help of this new placement company, mom and I applied for the waver program to pay for the Downey site.

   Getting our part of the application done was easy.  The company helping us was most efficient.  However, the application had to go to the state capital to be approved.  Around the first of the year we found out that mom's application was about to be approved.  Then the bad news that the process had taken too long (probably due to the Christmas holidays) and was denied.  We had to apply all over again.  Sigh.

   The holiday season was really hard.  Because of work I usually celebrate Thanksgiving the day before.  I made arrangements for mom to spend much of the day with me.  She was glad to be there, but it was confusing for her.  She liked being around her grandchildren, but was tired and glad to go back to her new home.  A few days later mom and I had lunch with her older sister, who was in the area.  My Aunt Louise and her family could see how poorly mom was doing.

   As the time moved towards Christmas I realized how much of my traditions were centered around helping mom to have a good holiday season.  With mom in the center, it was difficult to get her out on a day pass, so a lot of our traditions had to end.  Mom didn't miss them because she didn't remember it was Christmas.

   I had to re-think how I wanted to celebrate the holidays.  Some traditions I kept, though it was bittersweet, missing having mom (as she used to be) with me.  I added some new ones.  But it was hard, especially knowing that mom might not be around at all next year.

   Mom was with me for Christmas Eve.  I picked her up after work.  We had dinner (pre-cooked) and my kids come by.  After dinner I took mom back to her home and I got to spend some more time with my kids.  It was hard for all of us.  It was clear that mom is now a shell of her former self.  Christmas morning I visited mom, then drove down to spend the day with my daughter and her in-laws.  It was good for me.

And that's how 2014 ended.  I am convinced that dementia and Alzheimer's disease are the worst way to die.  Loosing someone to cancer is painful for them and heart wrenching for the family, but this is worse.  Watching a healthy person loose themself is much worse.

Lent and Easters I Have Known

Lent and Easters I Have Known

   I was raised Roman Catholic, so we observed both Lent and Easter.   A brief bit of explanation.  Being Roman Catholic back then (pre-Vatican II in 1965) meant going to church (mass) every Sunday and Holy Day of Obligation.  Mass was in Latin and lasted about an hour.  There was no Sunday School-whole families sat together for mass.  Since I didn't go to Catholic school, I attended religious training once a week after school with the other public school Catholic kids.  The nuns terrified us.  We were also still not eating meat on Fridays, though fish was ok.  I'm still not a big eater of tuna.

   The Catholic church has its own annual calendar, which includes the 40 days of both Lent and Advent (pre-Christmas).  Lent starts with Ash Wednesday.  Most folks don't realize it, but Carnival and Marti Gras take place in historically Roman Catholic areas.  Both are several days of great parties, but they end at midnight on Tuesday.  Ash Wednesday has begun.

   Ash Wednesday mass is a reminder that man started and will end in dust.  If you see folks with either a cross or a dark smudge on their forehead that day, they're Catholics who have been to mass.

   Lent is supposed to be a time of preparation of the high holy days of Good Friday and Easter.    We didn't observe as strongly as many.  My Aunt Alice and her family did the whole 9 yards.  Catholics are supposed to deny their "fleshly" desires and focus on God.  Traditionally Catholics will give up something during this period-like chocolate, or meat, or something that is important to them.

   Fasting is encouraged.  The ideal is to fast at least one meal a week, use that time for family prayer, and donate the money that would have been used, to charity.  But it wasn't just a time for giving up stuff.  We were encouraged to add spiritual practices, like spending more time in prayer or Bible or other spiritual reading.

   My parents encouraged me to join them in Lenten observances.  At first they would help me to choose what to give up.  Candy was often the choice.  Later on I was encouraged to choose my own sacrifices.

   Back then, spring vacation usually coincided with Holy Week.  The Catholic school kids got off on Holy Wednesday and had the following week off school as well.  For several years, once I was around 8, I would go camping with family friends up by Ventura.  It was a lot of fun.  In high school, my Girl Scout troop rented a beach house that week just north of Ventura.  Good times!  And some great stories.

   Traditionally, our local Kiwanis Club held a Pancake Breakfast and Easter Eggs hunt on the Saturday of Palm Sunday weekend (the weekend before spring vacation).  Since my dad was a Kiwanis member, he usually volunteered-often as one of their chefs.  I almost felt it was a rite of passage when I was allowed to help cook the pancakes when I got older.

   The Easter Egg hunt was in two parts-divided by age.  The younger children went to the toddler part of the park.  The older kids had a huge area on the east side of Smith Park.  Everyone found some of the plastic eggs.  Eventually we'd go and turn them in.  I never won any of the big prizes, but I had fun.

   Mom and I decorated real Easter Eggs.  Usually about the middle of vacation mom would dig out the big pressure cooker pot and we'd cook at least 2 dozen eggs.  The next day we'd start coloring them.  Mom encouraged me to make eggs for my friends as well.  The ones that had cracked in cooking (there were always some) were not colored, but became deviled eggs for Easter.

   One of the highlights was a trip to Sees Candy.  I would only be allowed to eat the free sample.  That's still my favorite candy.  Their Easter eggs are to die for.  Which reminds me, I need to schedule that trip this year...    Mom would also use my time off from school to do some household spring cleaning.

 Holy Week for us started on Palm Sunday.  I loved this mass.  We celebrated Christ's triumphant entry into Jerusalem.  I would keep my little piece of palm all year.  Some Catholics go to special masses on Holy Wed. and Thurs., but we didn't.  My parents had a business to run.

   They did take time off, however to go to Good Friday service.  For us, it was a 3 hour mass-from noon to about 3 p.m.  The church looked different.  The candles (eternal lights) were out.  The priest wore different rainment (clothes).  It was a house of mourning.  It was a day of fasting.

   Holy Saturday was a day of anticipation.  Finally, finally the end of my Lenten sacrifices are in sight.  There will be Sees candy!  And my Easter basket!  And a ham dinner!  Oh yeah, and Jesus is risen!  On Holy Saturday the candles in church were relit.  And there were long lines at the Confessional.  Receiving communion on Easter Sunday was heavily encouraged.

   And then it was Easter Sunday!  We had set out the Easter baskets the night before, and now they were full.  Somehow the Easter bunny knew to put the decorated names with names in the right baskets.  Before I was old enough to receive communion at mass, I would be allowed to eat one piece of candy with my breakfast.  But after, I fasted with my parents (part of the requirements to receive communion) and just looked at the goodies in my basket with much longing.

   Mass on Easter Sunday was a little longer than usual, but joyful.  Everyone wore good clothes.  Traditionally Easter was when women changed their hats to summer hats.  After church we would have a good brunch and we all enjoyed our chocolates and other goodies.  

   It was usually a relaxed day.  Sometimes we'd visit relatives-when I was younger, it was often my dad's family.  By the time I was 10 they were all gone (except for Doug), so family would be mom's.  If mom cooked, we had ham.  I could look forward to ham sandwiches for school lunches for a while.

And now for an Easter story...

   I was probably about 5 years old.  We had spent the weekend with mom's brother Ralph and his family.  This was before they moved up to Fresno for his medical residency.  Since we stayed with them, I was around their dog (the beloved Shadow).  And I'm allergic.  So by Saturday night I was in a full blown asthma attack.  My Uncle Ralph was almost done with his internship, so he was able to give me antihistamines.  Ralph wanted to take me to the ER, but my parents talked him out of it.

   Easter Sunday and time to go home.  The drugs my uncle gave me made me really, really drowsy.  My parents had brought my Easter basket, so I had been allowed a little bit of candy.  Back then, the thinking was that chocolate was bad for the skin and could make my eczema worse.  So I was only allowed a little bit at a time.  The Easter haul was supposed to last me a while.

   For some reason my parents did not take the coastal route home.  Maybe the Del Mar racetrack was in season-that alone would make a 3 hour drive into 5 hours or more.  But for whatever reason, we took the inland route, which is now known as Interstate 15.

   Unfortunately for my poor chocolates, we were having the hot weather situation known as Santa Annas.  It had to have been 90 degrees out there.  And, like most cars back then, we had no air conditioning.  So there I sat, all the long way home-drugged and drowsy, watching my chocolate melt.  My poor chocolate rabbit!  I wanted to cry just looking at him.  But there wasn't anything my parents could do but feel bad.  Eventually we got home and the chocolate went into the fridge, where it hardened again, but it was never the same.  I went to bed, still recovering.  I think I did get some extra chocolate though.

   Maybe that's why I still have such a love of good chocolate-especially around Easter time!

Momma Sandy Says - Things My Mother Taught Me

Momma Sandy Says

Things My Mother Taught Me

   I do want to apologize for missing a few weeks on Mondays.  Sometimes life gets in the way of writing.  I did have a blog on the vaccination issue for last week, but instead I'm going to postpone that for a few weeks while the high emotions settle down.

   Instead this week, I want to talk about messages we learn from our parents while we grow up.  So today, messages I learned from my mother while growing up:

1.  "Never just sit.  There is always something you could be doing."  To this day, I am always doing something while sitting.  I don't just sit and watch tv.  I'll be doing some hand sewing, reading, etc.  My mom, even with her dementia is still wanting to be active.

2.  "It's ok to listen to a baseball game while getting work done."  Mom used to listen to baseball games while ironing late at night.  She taught me that multi tasking is a useful skill.  And that I can enjoy myself even while doing boring chores.

3.  "Behind the scenes maneuvering may be necessary to get people to do what they should-just don't get caught doing it."  I call this mom's sneaky side.  I assume she learned how to do this to survive her bullying older sister.  I understand the use of this, but I try to avoid it.

4.  "Working hard is a good thing."  Great life lesson.

5.  "Take time to have fun."  With as hard as mom worked-all her life, learning that she valued fun as well was a good lesson that I try to continue myself.

6.  "Good friends are important."  Enough said.

7.  "Meals should be on time and good.  Don't skimp on food."  

8.  "Family is important.  Make the time."    Mom was the youngest of 7, so she had a lot of family.  We didn't see each other all that often, but mom made sure we did see them on a regular basis.  She also made sure that we visited my dad's family.

9.  "A clean, organized house is not the most important thing."  Often our house was cluttered, but not dirty.  The love was the important.

10.  "Do things together as a family."

11.  "Keep learning." Both my parents thought this was really important.  It wasn't important what one learned, it was stretching the mind that was important.

12.  "Help others - especially friends."  

13.  "Always remember where you see things in your home and work.  Someone will eventually be looking for it."  This was a great life lesson.  Memorizing where stuff way has always been useful.

14.  "You will know basic cooking skills before you move out or get married.  I didn't and paid the price."  My mom never learned how to cook until after she got married.  She insisted that I learn so that I would not go through the humiliation she had.

15.  "Suffer in silence when you can."  Mom grew up in a time when both men and women were not supposed to bring attention to their sufferings.

16.  "Keep working, even if you're sick."  Mom lived this, and caused me to live it as well.  If I'm sick in bed, I'm really sick.

17.  "Most men are babies when sick, although they will tough it out if they're injured.  Make sure they go see the doctor when they need to."  That was certainly true of my father.  The minute he was sick our universe stopped and we rushed to care for him.  My ex husband, on the other hand, once he was sick would disappear into the bedroom and want to be left alone until he felt better.

18.  "Husbands are a treasure.  Treat them well."  Generally good advice, with the exception of abusive men.

19.  "If you're smarter than your husband, try not to let him know."  This one came from her second marriage.

20.  "Disagreements with a husband should happen behind closed doors.  The rest of your family does not need to hear it."  

21.  "Parental decisions should be made jointly.  Don't let your children use the divide and conquer method on you."  Very wise words.

22.  "Be nice to your in-laws-even if they're awful."  My mom lived this.  In the end, my dad's family loved her, as did the family of her second husband, but she went through some really rough spots getting there.

23.  "Show elders respect."  I was required to obey this one. And I think it's a good idea.  Unless the elders in question are acting like idiots.

24.  "In a marriage, be a partner not a doormat."

25.  "Go to church regularly and be serious about it."

26.  "Try not to loose your temper.  Save that for when it's really needed."  It was possible to irritate my mom, but I only saw her really loose her temper twice.  I stood in awe and was grateful I wasn't involved both times.

27.  "Get along with your neighbors, but give them space."  Mom was always more friendly with neighbors than I am.  I think mostly due to how she was raised.  People were closer to neighbors then.  

28.  "Do not let your mother live with you.  In general relatives can visit, but make sure the visits are short and have defined closing dates. "  I'm pretty sure my mom was talking about her mother, who would have been horrid to have life with us.  Or any of her other children.  My uncle Ralph was quick to find her a roommate after Grandpa died.

29.  "Take in strays for the holiday-humans especially."  We always invited friends and neighbors who weren't around their own families to spend holidays, especially Thanksgiving and Christmas, with us.  I try to continue this as well.

30.  "Always have a couple of generic presents tucked away that you can bring out as needed."  This advice has been especially useful when strays come over for Christmas.  It's a way to make sure that even unexpected visitors have some gift.

31.  "Be charitable."  This was a common trait throughout my mom's family.

32.  "Volunteer to help locally."  In our busy world today, being a volunteer is even more important.  My parents helped out the American Legion, the Kiwanis Club, the Girl Scouts, their church, and a lot of other places.

33.  "We don't talk about sex."  I've often felt sorry for my mom about the topic of sex.  As the youngest, she was often raised by her older siblings.  I find it odd that my grandmother, who was a practical nurse, did not teach her daughters about sex.  Mom's oldest sister did her best, but it was a very Victorian household regarding sex.  Mom was uncomfortable hearing about the practical part of sex and her sister was probably equally uncomfortable teaching.  But mom was due to get married soon, so "the talk" had to happen.  My aunt didn't do a very good job and my father had to handle most of my mom's sexual education.  Luckily he didn't have any of those hangups.  In the end, their marriage broke apart, not because they didn't love her, but because she was not willing to solve some physical problems that made sex painful.  And my father was not able to stay celibate. 

   My mother was only able to talk to me about sex once, and that was in explaining her sexual/medical problems.  My father ended up being the one to have "the talk" with me, and it was mutually embarrassing.  

So, these are the lessons my mother taught me up to this point.  She continues to teach me, even in the depths of her dementia.  Somehow, she is still a loving, unselfish, and caring woman.

Dementia - Part 4

Dementia - Part 4

   It's been a long time since I've updated about my mom's condition.  She's still alive and there have been changes.  Time to talk about all that.

   I kept my mom living with me for as long as I could.  I had always said that I would never put her in "one of those hospital/convalescent places."  I had to break my promise to myself about that when mom's memory deteriorated so bad that she was a danger to herself.

   It was a nightmare.  She kept loosing memory.   One day she could use the microwave to heat up a frozen tv entree.  A few days later she would not be able to remember how to use the microwave, but didn't want to tell me.  So, I started making sandwiches for the meals I had to be at work for.  I was making her a lot of meals.

   Mom could still use her cell phone (to call and answer phones, nothing else).  She started calling me while I was at work, Sundowner delusional.  She wouldn't know where she was and wanted me to pick her up to take her home.  When questioned, "home" was a variety of places.  Sometimes in Arizona, sometimes in our old home town, sometimes she didn't know where.  I would talk her down.  I wrote down my schedule every day.  Mom was supposed to not freak out and call me until after I was done with work.  Sometimes it worked.

   About this time mom started obsessively walking.  As soon as I was gone, she would start walking around our apartment complex.  Eventually she would get tired and find her way back home.  But sometimes she would go outside the gates.  One time I found mom outside the gate, just standing there.  She stated that she was looking for me, but didn't know which way to go.  She didn't have her key on her, though she was supposed to.  That scared me.  How many other times had she exited the complex and kind people had let her back in?  One out there,  would she some day start walking and not know where she was going?

   It was experiences like those that led me to take the step of trying to get  her placed in some sort of safe location.  That became a nightmare as well.  I bless our primary care physician.  His hands are tied in many ways, but he helped in getting mom placed in a local convalescent hospital.

   That didn't happen right away.  First I had to get her Medical involved.  Mom's initial medical  case worker dumped her off on someone else days before we were to meet with her.  That postponed things several months.  Mom kept going downhill.  She no longer remembered how to shower properly.  No idea what shampoo should be used for.

   Mom's short term memory had shortened by then to maybe half an hour.  That meant she could remember something for about a half hour.  She was pretending to read-what once had been one of her favorite past times.  She couldn't keep the plots in her head.  Television was the same.

   For a long time I had been arranging mom's daily medications in their weekly containers.  But now she was not able to remember what day it was-let alone whether or not she had taken her morning or evening medications.  When she skipped days, then took double meds, I changed to a container that only had that day's medications.  The writing was on the wall.  Something had to change.

   I tried to get someone to be there while I was at work.  MediCal actually had a program about that.  I applied for that.  We were interviewed.  Turns out the program would only provide someone to help mom for 15 hours a week.  Could I be the caretaker?  For mom I was willing to leave my job, if I was paid enough.  There wasn't a program out there that would pay me enough.  Apparently, not going to happen.

   Mom's doctor helped a lot here.  He sent in the paperwork and miracle of miracles, the local convalescent hospital contacted me to say they had a room for mom.  So, on mom's 86th birthday I moved her into the Center.  She saw it as an adventure for her, and more importantly, a way to help me.  I think she knew how rough the situation was becoming for me.

   I don't know if I can explain what a relief it was for me to have mom living in a safe place.  I don't think I realized how stressed I was.  There were now nice people making sure mom ate and took her meds on time.  They would take care of her.  They would help her shower and stay clean.  They'd even launder her clothes for her.  And there were activities mom could take part in.

   The honeymoon did not last any where near long enough.

Freque Factory - Alabama, Last Time Around

Freque Factory

Alabama - Last Time around

  Finally it was time to move back to Huntsville.  Marie had rented our apartment and had moved in.  I was packed and leaving in a few days.  In a phone conversation Marie casually mentions that she has started dating someone and he is moving in with her.  She promises me that nothing will change...

   When I got there I realized that Marie and her new boy friend were in that in-their-own-world stage.  I barely existed to them.  Not what I was expecting.

   I did get a job pretty quickly.  Fast food again.  This time for a place called the Rocket Inn.  Hamburgers, etc. and soft serve ice cream.  I mostly worked closing shifts, so I got to clean out the ice cream machine most nights.  It was far enough away that I couldn't walk home that late at night.  I was able to get rides, but I started getting pressure quickly to arrange other transportation.

  I was taking baby steps spiritually.  I stayed away from Lincoln Street (mostly because it was too far to walk).  Mostly I stayed at home when I wasn't working.  Since Marie was busy I used the time to pray and read the Bible.  As a Roman Catholic I hadn't been encouraged to read the Bible and I was finding it really interesting.  What Jesus talked about was a really radical lifestyle!

   Soon after I came back to Huntsville I started having the same dream.  Marie and I were in her car driving some place.  It was a black car that she didn't currently own.  Suddenly we were in an accident.  My side of the car was hit.

   Marie got engaged after about a month of me being there.  The wedding would be in about 6 months.  I could stay living with them for now, but I'd have to find someplace else to live before the wedding.  This was not happy news.  Now what do I do?  I don't have the money to move.

   When it rains it pours.  I got laid off my job.  And like before, I wasn't able to find another job.  I started really praying.  What to do?  I was still having the black car dreams, only they were getting more detailed.  In the accident I was killed and Marie was fine.  It was not fun living through my own death most nights.  More prayer-why this dream and could it please go away?

   And then one day Marie came home with a new car.  Her uncle had gotten a new one and had given her his old one.  It was the black car of my dream!  It was clear to me that the dreams had been a warning.  Every time I rode in that car I would be risking my life.  Could I continue to live in Huntsville with no job and soon to be no place to live?  I'd like to live, thank you.  I called my mom and flew back home to Southern California.  I had no job there either, but at least I'd have a place to live.

  I started a new life back home, but I didn't forget my friends in Huntsville.  I called Marie on the day she was supposed to be getting married.  By then the couple had broken up.  I was glad about that.  We didn't talk long.  She was getting ready to go buy a new car.  Did I remember that black car she had?  On the road out to her home town she was hit by another car.  She was fine, but the passenger side was wrecked.  She was glad no one was with her at the time...