"Now, I don't want to alarm you, but..."

by Goldie

I'm sure those words were meant to keep me calm. I hadn't started to panic because I really wasn't sure what to panic about, but I'll have to admit, those words had caused a small alarm to go off in my brain, even if it was just because I didn't know what he was going to say next, and especially since, HE was a police dispatcher at the other end of the phone line.

The day started off with such promise, really it did. My friend, Marie, had offered to help me pack up things at my parent's house and I was looking forward to the company. We stopped at Starbucks to fuel up for the job ahead and got a couple of sweet rolls, just in case we needed something to sustain us through the morning.

My goal today was to get most of the kitchen packed up, find some of the items my parents needed at their new apartment, and take the old rifle bullets we found in my dad's office down to the city police station. No problem. 

Until we found the tear gas in the back of the kitchen drawer.

I didn't know what a tear gas container looks like and I wouldn't have known what this was, had it not been for the paper wrapped around the canister and labeled with my dad's handwriting: "Caution, military tear gas". Actually, the writing looked nothing like that because it was my dad's handwriting and almost illegible, but I've had lots of practice reading his grocery lists in the last six months and I figured it out quickly.

My only goal at this point was to get rid of it as safely and as quickly as possible. I put it in the box with the old rifle bullets and we drove down to the local constabulary. Somehow I assumed I could just walk in, hand it to someone, and walk out. I was wrong. 

"You'll need to call the dispatcher." The woman behind the glass pointed to a black phone on the opposite wall, "They'll send an officer to pick it up."

I did as I was told and told the dispatcher what I needed. A moment of silence. 

"So, you have this in your car?"

"No, I have it with me."

"You.. have it with you... in the building?"

"Yes," I said firmly. 

That's when he said, "Now, I don't wish to alarm you, but...(long dramatic pause)... you need to go outside and wait by your car. An officer will meet you there." He went on to explain to me about how tear gas can become unstable and he didn't want to chance having it go off in the lobby of the police station. He also took my name and asked where I was parked.

So I went back out and explained the situation to Marie. She was supportive. 

"I figured if you weren't out in 30 minutes, I'd go in and post bail."

After about ten minutes, an officer came and asked to see what I had brought. I started to hand the box to him and he backed away, saying, "I can't take it right now, I just want to see it." So I opened the box and showed him the bullets and the bag with the canister. 

"I'm sorry," he said, "We're not allowed to dispose of tear gas. We'll have to call the bomb squad."

So, we waited and waited some more, all the while Marie made comments on how the police obviously would be watching me, they probably already had a file on me, and how they'd probably search the car.

"It's okay," I said, "it's not like I have any dru... oh shit." I had forgotten about the trash bag filled with expired prescription drugs in the trunk of my car. I hadn't yet figured out how and where to dispose of them. There were even a few... narcotics... in there.

We laughed till we cried and then got hungry and debated whether or not to call and have a pizza delivered to the police station parking lot. We decided against it when we realized we'd have to explain the possibility of the pizza delivery person encountering the bomb squad.

Eventually the officer returned and said he'd talked with the bomb squad and since this was a small container of tear gas, it was okay for the officer to take it.

"It's military strength," he informed us, "It could stop a bear."

Which leads me to the one question I forgot to ask my dad when I told him the story.

Why?

I'll be on the safe side and assume they had a bear infestation at some point and needed to keep them out of the kitchen. Anything else, I'm not sure I want to know.

Off the hook? In my dreams.

by Goldie

For some crazy reason, I thought once my parents were in assisted living, I would be off the hook. They would no longer need me to be a caregiver because they were in a care facility.

You all can stop laughing now.

They've been in assisted living for a full year now and I still tell myself: as soon as we have this (fill in the blank) in order, THEN I'm off the hook. First it was the switch from the PACE program in Jefferson County to the PACE program in Denver County. There are always glitches with prescriptions. For the first week or so, I had to go over every evening to give Mom her bedtime meds. I can't even remember why. That issue resolved, there were plenty of others to take its place.

I had to make sure they had what they really needed in their apartment. Mom was making lists of everything she needed and kept saying she needed to go back and get her clothes, her shoes, her black knee high boots, her LP's, her sewing machine, her stuffed animals, her make-up, the 60-year-old set of china that was never used because we ate on plastic dishes, more knickknacks, and the most treasured item of all, her black leather motorcycle jacket. Just what the assisted living community needed: my 85-year-old mom wearing a black leather motorcycle jacket and gogo boots, listening to her Bon Jovi LP's at full volume.

I tell Mom there's no room for anything more in their apartment. She said she's going to ask if they can move into a bigger one.

When Dad said he could use a few more shirts, she snapped at him and said he has enough.

One real dilemma for me was what to do with all the stuff that was still in their house? Older brother would have hired someone to haul it all away. Younger brother was much more sentimental. He wanted to save as much as possible. Older sister let me know she trusted me completely, but if it would be okay, could I save the rowing machine and some books for her son? And the dough box end table for her? Dad said haul it all over to our house and have a yard sale. Mom glared.

How do I handle Mom and her incessant demands to have her things brought over? She's not rational, I can just ignore her demands, I say. Why can't you just bring some boxes over for her to go through? says my brother (one or the other - maybe both). Uh, when you can, maybe you can take Mom over to the house so she can pick up what she wants, says my dad. Ignore her and change the subject, says the nun at the facility. We should start thinking about selling the house, says older brother. We'll just move back home, says Mom.

AAAAUUUUGGHHH! says me.

Sibs went home to other states in a galaxy far far away. I realized that the chore of cleaning and clearing out the house was going to fall on me and my husband. I wasn't looking forward to giving my husband this news. He wasn't looking forward to hearing it and after he did, I was afraid he was going to go off somewhere to a galaxy far far away where he could smoke his pipe and read in peace.

From October 2014 to April 2015, I worked on this task at least 3 days a week. Sometimes I had help, other days, it was easier to do it myself then listen to the "Oh my god, did they ever throw anything away?" which was my husband's refrain. A friend came to help a number of times and was rewarded with a set of bookshelves and 4 boxes of books. My kids came to help when they could.

Some stuff went to storage. Some to the thrift shop. There was lots and lots of trash. We put at least 100 bins full of magazines into paper recycling. Lots of stuff went into my studio and my garage and my closet. Both my parents are the last of their sibs still alive. I found photo albums that had belonged to my grandparents, numerous aunts and uncles, and my great uncle. I found tin types and stereoscopic photos. I found my Uncle George's driver's license and my Aunt Rosemary's luggage.

I thought to myself, once all this is done, the house will be sold and I'll be off the hook.

I forgot about the small problem of Medicaid. Once the house sold in April, they suddenly had too much money to qualify for Medicaid. So... guess what? More phone calls and research. What Medicare program would be right for them? I finally signed them up for Kaiser, mostly because I have Kaiser Medicare and I know the system.

Maybe...maybe once I get their prescriptions all sorted out with Kaiser, make appointments and get them to their new doctors, sort through all their stuff in my garage, studio, closet, and various piles around the house, maybe then I'll be off the hook? For a little while?

I won't count on it!

The Big Decision

by Goldie

I guess it took something really big for me to realize I couldn't continue being on call to care for my parents all the time. If I could have moved in with them, maybe it would have been okay, but I couldn't do that. When Mom's doctor heard what was going on, she was convinced they needed to be in assisted living. Fortunately, the PACE program helps with that process.

The timing was perfect - or as perfect as it could be - because it was a big birthday year for both of them. Mom would turn 85 and Dad 90. All my sibs were coming out for a combined birthday party in the summer. We took this opportunity to talk with them about moving.

It went over about like we expected. They said no. We talked about looking at assisted living apartments and getting them on a waiting list. These waiting lists could be long, we told them. It's better to have a plan and not need it than to need a plan and not have it, we told them. It would also be better to choose to move than to have the choice taken away from you, we told them. They agreed to look at one place. Mom became more and more Catholic as her mental state became unstable. The Catholic facility was the only one she'd consider. It also lessened the chance there'd be an opening.

We all visited. One lovely thing was my sister had a good friend who was working there. We also had a priest friend who had lived there for some years. And, to top it off, there were some young Ethiopian girls working there. It sounded perfect. Mom and Dad were starting to get excited about the possibility until we were told there was an opening and they could move in right away. This dampened their enthusiasm. Nothing would persuade them. It was too soon, they said. All we could do was put their names on the waiting list for the next apartment.

And then my sibs went home. I worked with the program to make some changes. We arranged for all Mom's medicines to be delivered in med-packs so she would have them all together and on a schedule. The program sent over various therapists to assess the house and see what other services they needed. I made it clear to everyone - they needed to accept more help from the program if they wanted to stay at home.

It didn't take long for the next crisis to come. By mid-August, just a month after my sibs left, Mom was calling me again. She kept insisting the program was getting her medicines mixed up and not delivering them on time. She was running out of her pills. The aides were getting a little bit afraid of Mom, too, and most of them wouldn't go over there unless I was there, which sort of defeated the purpose.

I went over to check on Mom's meds and couldn't figure out why she had run out and why the dates on the med packs weren't right. Mom was quickly going over the edge and was close to being psychotic. A little exploring around the house and I solved the mystery of the missing meds. There, in the trash can, were several packets of daily meds, torn open. The Clonazapam (the drug she abused) had been taken out and all the rest of her meds had been thrown in the trash. This included meds for thyroid, high blood pressure, potassium, and anti-depressants.

And Mom, suddenly, militantly refused any help. She refused to let us move a rug to prevent tripping. She was totally defiant and hostile towards me and towards the aides. I know Dad didn't escape her hostility, either. His humor, usually present even in the roughest times, was not there. He finally told me he knew it was time to move. I was relieved. He was turning 90 that month and still taking care of Mom 24/7. He was too thin, too tired, too drawn.

I called the assisted living facility, expecting to be told we would have a long wait. By some miracle, another apartment had opened up. It would be ready for them in two weeks.

Until then, we had to have Mom's meds locked up and a nurse came every day to unlock her daily dose. Mom was either ranting or curled up in a fetal position in her chair. She became more and more depressed as the days went by and she adamantly refused to have any part in choosing what to take along to the apartment. If I started packing, she'd get upset and then Dad would come and tell me to stop. His way of coping - avoid conflict wherever and whenever possible.

Two days before the move - my brothers came into town to help. Their wives came, too, and I was counting on them staying at the apartment with Mom (who was to go with the first load) and helping arrange things. Anyway, two days before the move, I overheard Mom saying to Dad, "What do you think could happen to make us not have to move?"

We moved them in last September. It was totally chaotic at the house, so I'm glad we'd made our plans for Mom. As she hadn't helped choose what to bring and I hadn't been allowed to pack much (I did some anyway), I was packing frantically. Other helpers were coming and just grabbing armfuls of clothes to take over, not waiting for me to pack them. This is how we ended up with Dad's Knight's of Columbus robe from 60 years ago hanging in their new bedroom closet. And lots of clothes that didn't fit. Once something made it to the apartment, it was there until I could sneak it out without them knowing.

Eventually the essentials were moved into their small one bedroom apartment: couch, 2 chairs, TV, 2 hutches, coffee table, bookshelf, two accent tables, large dresser, bed. sewing machine table, two end tables, about 100 books and 200 cds, several boxes of knickknacks, enough women's clothes for every woman on the floor, and a biography of Bill Clinton, kept safely in her bedside table.

Mom still gets upset because she doesn't have her things.

Life Goes On

by Goldie

After going through a period of time when we weren't handling anything well, my husband and I sat down and looked at all the changes and challenges we'd been through in recent years. It was impressive.

2006/2007 - we lost my mother-in-law and her two brothers in 11 weeks. I was diagnosed with Parkinson's disease. Two weeks after I left teaching for good, my cousin died of ALS. On the day of his funeral, one of my former kindergarten students (then a young woman) was brutally murdered.

Since then - Our oldest son and his girlfriend moved back to Colorado, got married and had three babies - in 2009, 2011, and 2013. Oldest son also started teaching at the same high school he had attended. Our younger son, who had moved back home after college, had a grand mal seizure and suffered a compression fracture in his vertebrae. He was also diagnosed with osteoporosis - one of those non-marketable effects of Dilantin. My husband retired after 30 years of working at the university library. Six months after he retired, he had a grand mal seizure and broke his collar bone -same week that Mom went into her psychotic episode. Our daughter graduated from high school and during her "gap" year raised a puppy for a service dog organization. Oh, and I was also flying back and forth to Chicago with her for treatment at Shriner's Hospital. She had her last visit this summer.

Nothing prepares you to see your child or spouse go through a grand mal seizure. Nothing prepares you to hear the news about a young woman's murder. And, on the other hand, nothing prepares you for the intense beauty of seeing your son become a husband and father. No words can describe the joy of hearing those little ones call out "GAMMA!" as they run into your arms.

This is just a little of what has been happening in our lives in addition to suddenly becoming a caregiver for my parents. My husband and I realized our lives had been so eventful, it would be unrealistic to think we'd always handle things well. We need to be very forgiving of ourselves and each other.

Then, in the spring of 2014, a number of things happened all at once. Our granddaughter became very, very ill with pneumonia and sepsis, right after her first birthday. She came through it okay, but it really shook everyone. Our daughter-in-law was having health challenges, too, and needed lots of help with the children.

At the same time, Mom was becoming more and more unstable and she would call me in tears. She would tell me she was sick and Dad was sick and she needed me. Of course I went, only to find them just fine at home. Mom was going through panic attacks many, many times each day. It took weeks for me to figure out what was happening. She would complain about the PACE program getting her meds mixed up. I finally found out she was taking more of her Clonazapam than she was supposed to, then running out and going through withdrawals.

I was racing across town to my parents house and spending much of the day there, then coming home and getting a call to go help with the grandkids. Sometimes I had a whole 20 minutes in between.

After trying various tricks to stop Mom's drug abuse, I went in to see their doctor without them. I said I couldn't do it anymore - not with them at home. I had been through Mom's drug abuse before and I wasn't willing to do this now. I called my sibs and told them the same.

Our grandchildren needed to be our top priority.

The Ways We Cope

by Goldie

Once Mom and Dad were somewhat settled into the PACE program, Dad and I went on cruise control. I had to accept that there were some things I couldn't change. If Dad caved in when Mom asked him to help her get in and out of the bath tub, I couldn't force them to change or accept help from the aides. If Mom refused to go to the day program, so be it. At least her meds had been changed and she was functioning better.

Normal is such a relative term and we all got used to what we perceived to be "normal" for us.

Mom was still anxious and depressed. The docs had put her on other anti-anxiety drugs, but I suppose she had been on so many for so long, they just didn't work well anymore. She was not coping well because for the last 40 years she had only coped by taking drugs so she wouldn't feel. Now she had no clue how to handle any feelings, much less the extremes of benzo withdrawals. Going back on Clonazapam was the only thing that helped at all.

Dad coped by trying to avoid anything that might possibly upset Mom and doing anything she asked him to do. I wasn't to mention the "D" word - as in dementia - and I wasn't ever to say anything about nursing homes. If I was cleaning one of the rooms in the house and making pathways, Dad might come up to me and say, "I think you'd better stop. Mom's getting upset."

We did what we always did. We tiptoed around Mom. I finally told myself I was off the hook. They were with a program and it wasn't my fault if they refused the help that was offered to them. If I filled in, it would just allow them to continue to refuse outside help. If something happened, so be it. It wouldn't be my fault. I came over once a week and stayed with Mom so Dad could go shopping. I ignored what was going on with the program unless I got a phone call. I was worn out.

At the same time, I was avoiding being at my home, which was not good, but it was my pattern of coping. Growing up, when I felt really stressed, I left and found my friends. Home was not the safe place to be. As an adult, I've found that I still leave home if I'm stressed. I spend time with my friends, not my family. Friends are safe.

MY family is safe, but exhaustion plus stress equals stupidity - or at least unhealthy behavior in my case. My husband started resenting the fact I was confiding in others more than in him and spending more time with friends than with him. When I was still teaching, I had other people around me all the time and this filled a certain need for me, but now I was retired on disability and my husband had been pressured to take early retirement when the economy tanked. Along with everything else, we were adjusting to being retired - together.

I was also still adjusting to my medications for Parkinson's. One of the meds I was given was a dopamine agonist. I took the lowest dose possible. The negative effects* did not start right away, but crept in slowly and we didn't attribute them to the drug. I became obsessive/compulsive and impulsive. I'm a little that way, anyway, but this threw it into hyperdrive. I was a little manic and having a great time. I was confident, cute, and I was sure people liked me - which was not the way I was normally. After nearly two years on the drug, I started to spin out, getting very manic. I either could not focus on anything or I was hyperfocused. Essentially, my body and brain responded as though I was on methamphetamine.

When I went off, it was because Medicare stopped paying for it. I had come up against the dreaded donut hole. I went into a deep depression - a dopamine crash. I did not tell my doctor. My husband was angry with me all the time, with good reason. He didn't know the drug had caused my behavior. No one warned us about this possibility. The drug now carries a serious warning.

To make a long and very dramatic story much shorter, we got through this time with a lot of hard work, a lot of heart to heart talks, dropping me back to the bare minimum of Parkinson's meds, and increasing one medication just slightly. Now, our relationship is better than it ever was and I'm feeling better, too. This was, without a doubt, the most difficult time in our marriage and I wouldn't ever want to go through it again, but I have also come to be deeply grateful for this experience.

Why? Now I know what it feels like to be manic, to be depressed, to be anxious. I know what it's like to have a drug manipulating my thoughts. I know what it means to choose to fight through this and make my life better. I wish I could say it helped me to feel more compassionate towards Mom. I get her more than I did before, but that's all. She continually chooses to keep taking the drugs.

There were ups and downs, but as far as Mom and Dad were concerned, I was still cruising and avoiding them as much as possible. It wasn't going to last. The road ahead was a rocky one.


*there is no such thing as drug side effects, only effects which are not marketable

Waiting Game

by Goldie

"It's okay to wait for a crisis." The social worker from the PACE program said this to me - not my parents! She was kind and very realistic. She made sure I knew no matter how hard I tried, I wouldn't necessarily be able to prevent a crisis. And I shouldn't feel guilty.

Of course, the reasonable thing to say is, "Don't wait for a crisis! Get help now!" and that's exactly what everyone said to Mom and Dad, but they weren't thinking this way. Mom was convinced she didn't need help and Dad was convinced he could take care of Mom and, if we just let them be, everything would be fine.

Which means Dad was in serious denial.

Then my brother in Texas had a good look at their finances. Mom's hoarding had taken quite a toll on their bank account and they had some huge credit card balances. Fortunately, big brother was able to come to town and talk with them... and take away their credit and debit cards. Ordering from catalogs was an easy way to hoard. Big brother talked to Mom, Dad, and me, and we decided together that he would look after their finances and talk to all the banks and credit card companies. I was relieved.

Mom's antipsychotic medicine was expensive. Big brother was able to convince them of the need to get on Medicaid so their doctor's visits and prescriptions would be covered. The financial piece was what finally swayed Dad. He had never been able to say no to Mom and he had been more worried about their finances than I knew.

We stepped up the process and I ignored every phone call where Mom or Dad would tell me they had decided not to sign up for the PACE program. Both Mom and Dad were evaluated. With Mom's diagnosis of dementia, she automatically qualified for the program. With their low income and no assets, they also qualified for Medicaid. On the cognitive evaluation, Mom scored just slightly above rock bottom. They started with the PACE program in September of 2010.

Ideally, Mom was to attend the day program at least three days a week so Dad could have a break. She refused to go without him, but they did go together twice a week - for a week or two. Then they started calling to say they were staying home. They said it was boring and they didn't like the food. Mom didn't like spending time with old people and neither of them liked riding the bus. They also cancelled nearly all their appointments because Mom wouldn't feel like going or because the bus would be scheduled to come early in the morning before Mom wanted to be out of bed. Then Mom would complain about needing to see the doctor and how she couldn't get an appointment.

They also had home services - a housekeeper came once a week to do light cleaning and laundry, and an aide came twice a week to bathe Mom. It wasn't long before I got calls from the program. Mom was refusing her baths, saying she had already taken a bath or shower. Yup. Mom didn't like having the aide help her so she insisted Dad help her. Which, of course, he did. No amount of pleading and telling her how worried we were about Dad falling and both of them getting hurt made any difference at all.

On the bright side, the new doctors met with the pharmacist and they changed Mom's medications. The present cocktail of drugs was undoubtedly the cause of at least some of her dementia. They weaned her off the anti-psychotic drugs and tried weaning her off of Valium. I had to put the pill bottles where I thought she couldn't reach them. Ha. The power of addiction was too strong. The doc finally just took her off Valium cold turkey and wouldn't prescribe any more. Eventually this worked... after she ran out of all the pills she had hidden away.

Wow. Dad's dream sort of came true. With the change of medication, about 90% of Mom's dementia symptoms seemed to have vanished. She was thinking much more clearly and Dad was ecstatic. However, Mom was suddenly severely anxious and depressed. Over the next two years the docs adjusted her meds and eventually found a combination that worked well enough. Mom was used to popping the Valium whenever she felt the least anxiety. At one time, she was taking 4 pills a day. The addiction was so great that the docs finally put her back on Clonazapam, a drug in the same family - and in my opinion, just as dangerous. But the docs felt it was an improvement.

We had ups and downs with the bathing issue that were never really resolved and they finally stopped going to the center except for doctor's visits. They complained about the program constantly, but I was happy with the care they were given. There is no doubt in my mind - the PACE program bought them another 4 years at home.

Home Again

by Goldie

After a week in the rehab, Mom was doing better. The antipsychotic drug didn't kill her and gradually her psychotic episode had diminished. She wasn't normal, by any means (or whatever that means), but she was doing better. Dad was so happy to have her home again, he was determined she would be fine and they'd live happily ever after.

It worked for a day or two....until Mom panicked and flushed her antipsychotic meds down the toilet. Which is just what our water system needs, right? Dad called me in a panic and I called their doctor. This was the doctor whom I felt was totally incompetent. He reluctantly called in a new prescription and said Mom should be in a nursing home. Great. Loads of help.

The home visits from nurses and therapists began just about the same time. Mom, who was still up most of the night, would sleep in till nearly noon. When a nurse came for an evaluation at 9 am, mom refused to get up until the nurse said she would see Mom in the bedroom. Then she suddenly jumped out of bed wearing only a short, thin night gown and came out to the living room. She refused to wear a robe. It was March, but still quite cold. Her nightgown was old and almost transparent. She wore nothing on her legs and was barefoot. I was embarrassed.

Mom answered questions flippantly and defiantly. She gave her weight as 135 lbs when I knew she was up to about 170. No, she didn't need help with anything. Mom insisted she could cook dinners and do housework and take care of herself without help. 

I was angry! How dare she lie like that! We were trying to get help for her. She still could not even feed herself because her tremors were so bad. Dad was helping to dress her and bathe her. The thought of my frail dad (weight 145 lbs) helping Mom (4'11" and 170 lbs) out of the bathtub scared the shit out of me. Mom still wouldn't let me do anything for her. Physically, I couldn't force her to accept my help.

Obviously, though it took a few minutes for my brain to kick in, the nurse got it. Mom was proving to everyone just how irrational she was and how much help she needed. After all the evals, Mom was granted some physical and occupational therapy in home visits as well as a few visits from a nurse. This would last about six weeks. And after that?

Another sib to the rescue! I am so grateful to have siblings who have been willing to help out in any way they can. My other brother in Texas had been busy doing research and asking people about elder care. He called and talked to us about getting Mom and Dad signed up for a PACE program (Program of All-inclusive Care for the Elderly). The good thing was they would have all sorts of help: someone to help Mom with baths, light housework, and laundry. There was a day program and a bus would come and pick up Mom some days so Dad could have a break. All the doctors were in the same building as the day center. The bus would pick them up for appointments, too. Another positive - they would be changing doctors. 

The down-side: by the time we finally convinced Mom and Dad they needed to sign up, and got the paperwork done, as well as the additional paperwork and evaluations for Medicaid, it was September ... six months after Mom came home from the rehab. It had taken some time to convince Dad to override Mom's refusal to change anything. 

My life began revolving around almost daily trips across town to their house, doing dishes and other housework, checking to see how Dad was holding up, staying with Mom while Dad went shopping, and cooking dinners for them. Mom's mental state went up and down. She was unpredictable, becoming angry and manic, talking nervously, nonstop. She got angry with me when I did the dishes or tried to clean. Sometimes she would ignore me completely, looking away if I tried to talk with her, or telling me to leave. She would get angry if Dad talked to me.

But then, there were other days when I could get out the old family photos and she would talk a little about family. Dad was coping fairly well, but getting thinner. He was also getting frustrated, something that he showed only when Mom was in the other room. Then he would grin at me, and gently hit his forehead with his palm several times.

I couldn't help grinning back at him. Tiptoeing and avoiding conflict become our mode of operation. Not healthy, but sometimes you do what you need to do to survive.