Tuesday, November 14, 2023

Sleep tips

 A friend just said they have trouble sleeping. I've had lots of issues from time to time. And I feel like I just really got a handle on it (knock wood). But also, I've read a ton of articles and tried many, many techniques. So I figured I'd share. In no particular order: 

My newest realization is that I always said, and my parents always said, "Get ready for bed." But that doesn't help your mindset. So don't think, "I'm getting ready for bed." Think, "I'm getting ready for sleep."

  • Very important is to get into a regular habit of going to bed and getting up at the same times, daily. Because otherwise you're just jetlagging yourself on a regular basis. You have to fight through getting up to go to the bathroom (don't drink anything for hours before bed), or eat or walk around. And if there's a night that you stay up late, still get up at the same time. And if you have to take a nap, keep it to 20 minutes. Even if you don't fall asleep but just quietly lay there for 20 minutes. If you nap longer, then it throws your sleep cycle off. 
  • If you have lots going through your head, keep a pad and paper nearby, write everything down that you need to think about the next day and then give yourself permission to wait until tomorrow to deal with it. Nothing important will happen overnight. 
  • Turn your phone off. 
  • Don't eat anything before bed, and no caffeine for many hours before bed. I know I need to not eat anything stimulating after 9. Really 8, depending. 
  • gentle stretching/yoga before bed can be helpful. 
  • My dad's idea was, after getting into bed, to focus on each part of your body to relax and work your way up from your toes. He said he never made it to his knees, he was already asleep. 
  • meditate before bed. Or try any of the apps that have sleep meditation or sleep stories. 
  • My new trick I mentioned. Focus on the breathing from your nose. And/or use earplugs. You'll hear yourself breathing louder. I used to focus on a white noise machine. But that didn't always do it. 
  • If you have stuff to talk about, do it before you get into bed. 
  • Read or play very mindless games. It's not just about relaxing. It's about getting rid of all the thoughts keeping you up. 
  • Other people have other tricks. I don't like the idea of medication. It's very addicting, very fast. And you don't want your body getting used to it. 
  • If you wake up with a tense jaw, you need a mouthguard to protect your teeth. 
  • If you wake up with a stiff back or neck, you probably need a different pillow. 
  • Best to sleep on your back so your body lays out flat after sitting a large part of the day. 
  • If you roll on your side, try to not tuck your neck. Keep it in line with your back. You don't want to wind up hunched over when you get older. 
  • When I was young, I found specific music that had a very repetitive guitar (or any instrument) line that I could focus on. I would listen to the song over and over until I meditated/lulled myself to sleep. Easy to do now if you have an Alexa. I used to wake up when the tape ran out and I could take my headphones off and go to sleep! 
  • Relaxing before bed is really important. I sometimes wake up very tense. I have nightmares, and that doesn't help. 
  • A short mantra can help. Like, "I am sleeping." 
Some added jetlag and beauty tips: 
  • Drink lots of water, just not before bed. 
  • sleep face-up so fluid doesn't pool, giving you bags under your eyes or a puffy face. 
  • Try to get into the timing of the new location FAST. So force yourself to stay up if you have to. Or go to bed early if you have to. 
  • Get into the sunlight and breathe! 
For more travel tips, see my previous post! 
If you appreciate the tips, please forward. 
Be well, sleep well!

Thursday, June 22, 2023

Travel Tips (flight and other)

Several people recently have asked me for travel tips since I travel a lot. I'm telling you all my secrets, so you better use them wisely! Flying info is on top, and other travel is below that. 

 TRAVEL TIPS FOR FLYING:

PACKING:

·               Obviously, don't check a bag if you don't need to. If you do need to, bring all your valuables, plus a change of undies and any medication in your carry-on. 

 

·       I put all the big stuff, the heavy stuff, the solid stuff, on the bottom (foot) of the bag and the light stuff that shouldn't be crushed, on the top. I put all clothes into separate plastic bags and push the air out. Makes more room, and separates it out for easy finding of stuff. 

 

·       I pick a color theme for each trip. And no, it's not always purple. It's usually neutral bases with all blue, or all purple, or all black, etc. Then I can mix and match as needed. 

 

·       Always pack layers. And always wear your biggest and heaviest shoes and clothes on the flight, so you don't have to pack them. 

 

·       I don't wear a purse. If I need to bring a purse, I take everything out and pack it in my bag. So that my computer backpack fits under my seat as my personal item. I have shoe bags, but plastic bags also work, and are useful for wet bathing suits or laundry, although I also carry a laundry bag (super thin and can suck the air out). I have nothing that requires ironing. I will roll several dresses within each other and hope for the best. 

 

·       Fill shoes or boots with other stuff. Glasses, or anything that needs protection. I always leave room in my bag for purchases on the trip. Never over stuff. Then they might explode, especially if checked. 

 

·       Since checked bags have to be 50lbs or under, I put the heaviest thing in my carry-on, like books. And, like I said, I wear the heaviest stuff too. And I weigh it before I go, again, leaving enough wiggle room for purchases of heavier things too. Then I won't worry. 

 

·       I have packing lists for every occasion. And different suitcases for every size and type of trip. The perfect one for every occasion. They're almost all purple, of course. I have a cool cover for my checked bags to make them hard to break into, but also easy to spot. And for other bags, lots of fun ribbons or name tags. 

 

AIRPLANE SEATING:

·       When I book, I pick a row very close to the back, where there’s an empty row. Then I check the seats again a few weeks before, a few days before, and when I check in to see if there's still no one sitting next to me. The plane always fills in from the front to the back, so if you sit all the way in the back (not the last row, those seats don’t recline) then there's less chance of someone sitting next to you. And of course, people often travel in pairs, so middle seats fill in last. So if the plane is getting full, pick an aisle or window seat with an empty middle seat and chances are it'll stay empty. You can also ask at the airport. And if you want to be closer to the front to get off faster, pick the masthead. You can't have your bag in front of you during take off and landing, but only then. The flight attendants will move them for you and return them. And you have more legroom, and they leave the seats there empty for wheelchairs. So if they're not booked, they often stay empty. I just had the whole row to myself (which happens a lot) because that's where I sat. Great view too. And it was actually the first row behind First class, so I could even keep my bag under the seat in front the whole time. 

 

·       I’m right handed, so I sit in the window with the window to my right. Then I never bump into people.

 

·       I'm also spoiled because I fly Jetblue and am Mosaic, so I can upgrade to extra space with no cost. And every time I just ask them if they can keep me away from people as much as possible. So I get an empty row a lot. And if it's full, at least I have an extra space seat. I have the Jetblue credit card and use it for everything. I also have frequent flier numbers for every airline. My #2 airline is Delta. And I have that connected to all my online purchases so I get points. You can connect some FF to Lyft, Avis, and other things too.

 

FOOD:

·       I have lots of food restrictions. So I don’t always know if I’ll have access to food. So I always bring lots of food with me. And an empty water bottle that I fill at the airport after TSA. Bring hand cream and eye drops. Get up and walk around when you can, don't cross your legs. I drink a ton of water before, during and after. Gotta stay hydrated. No caffeine or alcohol. That just depletes. I put Airborne in my water. Little extra vitamins/zinc/C

 

TSA and BOARDING:

·       I have global entry, So I have TSA Pre-check. Totally worth the cost.

 

·       I wear comfy pants and layers. I don't put on a belt, or jacket, or carry my phone until after I go through TSA. It's all in an outside pocket in my suitcase so I can breeze through tsa and then put it all on. 

 

·       I wear slip-on shoes and bring fuzzy over-socks with me. I have a scarf that is actually made for travel and is antibacterial. So I wear that when I get chilly and it's supposed to give me extra protection. And I got it BEFORE covid! I also have a blow-up neck pillow. 

·       I take a decongestant and a nasal spray before take-off. It keeps my sinuses and inner ear clear and helps me sleep. If it’s a long flight, I’ll do nasal spray just before landing too. I also sleep on planes.

 

·       I board the second I can, so that I have first choice of putting stuff in the overhead. I like being able to keep an eye on it, so I keep it over my head. But if I really want to be smart or fast, I'll put it in the first empty overhead closest to the exit. Then I can skooch out fast and grab it right before deplaning when no one's crowding the aisle. And I can also get situated before someone is next to me. Get out my headphones. Nasal spray. Drink water. Bookmark tv/films to watch. Charge my phone, etc.

 

 

JETLAG TIPS:

·       I usually go to the bathroom at about 40 minutes before landing. That's just before descent when the seat belt sign goes on. I brush my teeth and hair (different brush 😉) so that I feel fresh when I deplane and then I don't need a bathroom in the airport (where the lines are so long) or on the ride home. 

 

·       Flying West is easier. You won't have too much jetlag. You'll just wake up earlier. The only thing to get you more into a routine is to stay up late the first night you land and then you may be on west coast schedule immediately. Going back east is much harder. You have to try to work your way into the east coast schedule the last few days of being west. So keep trying to go to bed earlier and get up earlier, which is hard if you're working. 

 

FOR OTHER TRAVEL:

For traveling to places I haven’t been before, I do a ton of research ahead of time:

·       Restaurants I can eat at (bookmarked on yelp)

·       Power outlet type



·       Local transportation options

·       What currency they use

·       Will my phone work there? (I have Verizon, and a daily international plan for when I use my phone overseas. I try to use local wifi everywhere so that I’m not using up minutes and can make wifi calls)

·       Are there hotels where I have memberships? (M Life, Hilton, Marriott, etc, all have their own rewards). AAA gets you a discount in most places, also for car rental. Or AARP. Or SAG AFTRA.

Lastly, I have a complete set of toiletries/makeup/night creams, etc. All ready to go. So I don’t need to pack that. It’s all set. If I’ve run out of something on a trip, I refill it as soon as I get home. No full size liquids!

Lastly,

I keep a chart like this:

Dates

Place

Plane/train/car

Local transpo

lodging

Notes

 (If you can't see the chart correctly, it's DATES, PLACE, Plan/train/car, local transpo, lodging, and NOTES) 

Then I can easily keep track of everything I need. Plus a schedule. Then I keep it on my desktop. Email it to myself, and usually print it too. Then I have it wherever I am.

 That’s the scoop! Be safe. Be considerate. Have fun.

Tamar


Sunday, June 27, 2021

To vaccine or not to vaccine

I know for some people, this is not an easy answer. 

For me, I had zero hesitation. I happily get the flu vaccine every year. I've never had a reaction. And I very rarely get the flu. In fact, in general, I'm in better health because of it. I got all my vaccines as a kid, and as I get older and qualify for others, I'll be the first in line. 

I know the covid vaccines are the best options to protect me, protect my loved ones, protect the other people around me, protect my massage clients, and to get back to any regular way of life with big hugs, big smiles, and live entertainment and interpersonal interactions. The reactions are 1,000,000 to 1 to get any sort of major reaction. 

I got the Pfizer vaccine. Both shots, and besides a sore arm, I had zero reaction other than the feelings of hope, and more peace-of-mind that I'm doing my part. 

Recently, I spoke to someone who's not gotten the covid vaccine yet. She believes she had a major reaction to the flu shot years ago, unfortunately, it's the only time she'd ever gotten a flu shot. So I decided to do a little research. 

So what I was looking for was a list of ingredients and properties of a flu shot, and then the same of the 3 covid vaccine shots available in the US. Because the flu shot gives dead flu cells that create antibodies but should not cause the flu. The covid vaccines don't actually contain any version of the virus. They contain RNA that's been genetically engineered to look like the covid virus which also creates the antibodies but couldn't give you covid. 

This is what I was looking for: 
and

Some other findings that are interesting: 



However, the websites do say that the reaction to the covid vaccine is generally the same or stronger than the reaction to a flu shot. And that if you've had an adverse reaction to a flu shot, it may not be recommended to get the covid vaccine. But that you should speak to your doctor about it and determine the best course of action, or maybe the safest shot for you to get. 

I also know of people that have gotten covid, or gotten sick at the same time as the flu or covid shot, but it wasn't from the shot. It was that they were otherwise exposed and just happen to get very sick at the same time, because it takes 2 weeks after the shot to develop the antibodies and protect you. So if you happen to have already been exposed and have it in your system, the shot won't help that day. 

There are new options frequently. And generally strong reactions are 1 in a million and will quickly go away, as opposed to getting covid, which doesn't guarantee you'll ever get better. But I do recommend checking the cdc.gov website for up-to-date information and to speak to your doctor. 

I also some people waiting for the vaccines to be approved by the FDA and not just for emergency use. But if you've seen my documentary, "Fighting For Allergy-Free Food" you'll know that the FDA is not the end-all be-all for protecting us the way we want. The reason the vaccines were developed so quickly, is partially because the researchers/scientists already knew that a global pandemic would most likely be on the horizon. We'd had major scares before with Sars and Ebola and an airborne one was just around the corner. They were already working on the technology and knew it had to be done fast, safely, and efficiently. They couldn't start testing yet, but they each did the same extensive testing that all vaccines do. It just happened a little faster than we knew, because it had to. I know several people who were in the vaccine trials and I appreciate them. For more answers, look at the CDC.gov website. 

Please keep wearing your mask, washing your hands, be considerate of all others whether or not you agree with them, and be well!

Monday, March 15, 2021

Early warning signs of dementia. A love letter to future caregivers.

 

7.7 million new cases are diagnosed every year, with 47.5 million people living with dementia worldwide.” Braintest.com

 This is a warning from someone who is dealing with loved ones with the disease. The true story of the earliest warning signs and other guidance.

 

My Mom:

The early signs of my mom’s dementia were so subtle that I totally missed them. That was maybe 10 years ago and she just passed 3 months ago. Sorry to give away the ending. But I wish that I hadn’t ignored any warning signs of my mom’s or dad’s dementia, or any other signs and fought hard to get people to listen. That’s why I’m telling you. Pay attention. Little changes can mean a lot. And the earlier it’s caught, the better.

My mom thought that by doing puzzles daily she would stave off dementia. She saw her oldest sister, 4 years older, lose her mind and be nearly catatonic in a nursing home. No one wants that. But my mom’s hearing was very bad. Not very bad. Very, very, very, bad. Almost gone. If she didn’t have her hearing aids in, you could scream next to her and she had no idea you were there. With the hearing aids, everything was still garbled, but at least half the time she knew you were talking to her. There’s a funny thing with hearing aids. The sound comes from a little speaker that throws the listener off as to where the sound is coming from. So you’d have to tap her arm as if to say, “look at ME. I’m the one who’s speaking.” And then, with Corona Virus/Covid-19, everyone was wearing masks so you really couldn’t tell who was speaking.

I think my mom gave up trying to listen or communicate many, many years ago. And that undoubtedly was a contributor to the dementia.

My mom was always sweet, quiet, quirky. And definitely anxious. She always had to check doors and windows to make sure they were locked. Check the stove. Check the lights. But at some point it became much worse. And I had no idea that could be an early sign. I’d stay with my parents, in their giant old house, where I went to high school and if I was the last one to go up for the night, she’d say, “Do you know how to turn the lights off?” Yes, of course I do. She didn’t trust me to lock the door. Or the windows. Or turn lights out. And sometimes I’d make fun of her, and sometimes I’d get really angry that she acted like I was 4 years old. How could I have possibly made it this far in life without knowing how to turn off a light?! Or lock a door? Could I find my way upstairs? How do you turn the faucet off? Good grief it was frustrating.

Now I realize that could have been an early sign. Her mind was already playing tricks and I was upset because I felt she trusted me less than she used to. But I think she trusted herself and everyone around her less. She was starting, very, very slowly, almost imperceptibly to become paranoid. Almost.

At one point, my mom said something that made no sense to me at all. She questioned whether everything I did for them was really to be trusted. She thought if my dad passed away first, would I suddenly completely change everything she knew about me as a person, abscond with all their money and leave my mom on the street? I had to assure her that as long as I was alive, my parents would be taken care of no matter who went first. And she felt better. Briefly. Those thoughts seem to pop up periodically. I knew that was dementia. But since she seemed so lucid 99% of the time, I reacted each time as if she’d slapped me. Terribly hurt. Angry. Confused. Never stopping to say to myself, “It’s the dementia, it’s not her.”

Both my parents started to show the same sign of dementia at the same time. Their personalities totally changed. One became much nicer, one became much more angry and moody. Their reactions were so unpredictable. And again, these are not big things to other people. But my mom never cried, ever. I saw her cry once my whole life. And in the last few years, she was teary all the time. I saw her yell at people. I saw her insult people. And if you didn’t know her from before, you’d think it was all perfectly normal. But it wasn’t. My dad was the opposite.

It is brutally hard to continually tell yourself that the personalities that your parents, or loved ones have assumed are not real. You think it’s like someone who’s on truth serum: there must be something true in what they’re saying, even if it doesn’t sound like something they’d say. And it’s very hard to not take it personally.

Another sign I missed: At one point, my father had a nosebleed. I was visiting and in the guest room. My mom came running for me to help him. When I walked into their room and bathroom, it looked like a horror film massacre. Blood everywhere. And my dad’s nose still gushing. He’s not patient and he’s not up on first aid like I am. You have to pinch the nostrils together until the blood clots. That can take 10 minutes. But you sit up and pinch like your life depends on it, which it does. Because I could see my dad had clearly lost a lot of blood and we HAD to get it to stop asap. I yelled at him in a voice he did not recognize. “NO. This is unacceptable! You pinch that until I tell you to stop and not before then. Understand?!” He understood and we got the bleeding under control.

So what was my mom doing during this? Was she concerned about my dad? Calling 911? No. She was very upset about the blood on the old carpet and everywhere and was busy cleaning and paying absolutely no attention to us. I thought this was crazy. But I did not realize it was a sign of dementia.

My mom grew more and more tired as the years went on. She would get up, get dressed, take a nap. Have lunch. Take a nap. Do a puzzle. Take a nap. All day, every day. And I realized at one point that my dad’s hearing (or powers of perception) were lacking just enough that he wasn’t listening closely to her when she slept. When I listened to her breathing while napping, I knew she had something wrong and immediately called her doctor (always have their doctors’ numbers) and brought her in. Turns out she had congestive heart failure. That sounds awful. But there wasn’t too much to do besides meds. And she lived with it for the rest of her life. It was horrible to hear. She always sounded like she could be taking her last breath.

5 years ago, when my dad had a series of strokes (I’ll get back to that), my boyfriend and I took my mom to an assortment of nearby assisted living facilities in case he wasn’t coming home. Or couldn’t come home. We didn’t tell him. And I told my mom to NOT say anything to him about it. If he came through well, he’d go back home. And at some point we would broach the subject together. But the second we walked into his room at rehab, my mom started raving about one of the places we saw. Of course my dad completely panicked, thinking he was never going home again and causing hell.

That was definitely a problem with my mom and her neural wiring. Or her memory. Or more. She had definitely begun to repeat herself a bit. Or be forgetful. But she would blame everything on her hearing. “Oh, I must not have heard you.” No. We had many discussions on each topic and then she’d do something rogue right after. Again, extremely frustrating. And hard to tell what she did on purpose, and what she didn’t.

My mom, with the mild dementia and exhaustion, was still very productive. At least I thought she was. When she was 88 she’d been asking for a place to display her art. She was an extraordinary visual artist of all sorts. And she was asking for a place with a lot of specifications. She probably thought it was impossible, and so she could complain for the rest of her life, never having to actually do a solo art show. But surprise, we found a place that met all her criteria. They were booked up a year and half in advance. And when I said they accepted her that far ahead, she said, “I’ll be dead by then!” And I said, “What if you’re not?!” And she said, “Then I don’t have enough time!” Turns out, she was very much alive and we hung 91 painting a month after she turned 90. She spent all 18 months working to organize the show, what to hang, where to hang, how to hang, how to frame, what records, what prices. And when we went to hang the paintings, it wasn’t going to work at all the way she planned. And she hadn’t prepared for taking orders well at all. I don’t understand what she did for all those months.

However, now that she’s gone and I’m going through all her things and papers, I realized I missed so many signs. She was a depression baby. Born in 1926 and learned to save everything. EVERYTHING. Fix things you can fix. Repurpose everything you can. Save broken things for parts. Save everything because it might be salable. But now I see she saved thousands and thousands of tiny pieces of paper with almost nothing on them. She had the same “important” list of phone numbers written on 100’s of index cards or pads or paper. She had a cell phone, but towards the end she couldn’t remember how to use it. She had over 20 file cabinets hidden all over the house and garage with the same file names and the same things in different files. She printed every email she ever got, and saved every one of them. Occasionally she would try to throw things out, but she’d never get very far. And now I realize she didn’t get anywhere at all with that.

When I’d gotten her the interview for the solo art show, they needed to review all her art ONLINE. Of course she had nothing online. So I asked her for photos of all her artwork. She constantly took photos of absolutely everything. So I knew she had them. And she had a computer. So I said to show me where the files are and how they’re sorted. Keep in mind, she was an executive secretary at Bloomingdales at one point in her life. And loved reading. I know she was literate. And I know she knew how to alphabetize. But her files in her computer were this: Marion’s art. Within that: Marion’s art. Within that: Marion’s art. Thousands of photos, tons of duplicates, tons of photos of the same paintings taken many times and from bad angles with poor lighting. Nothing was organized by year, by name, by art modality, nothing. I had to try to sort it all out and guess which was watercolor, which was oil, which was pen and ink, and on and on. That was probably a big warning sign. But I missed it.

The biggest change came when she had an incident 2 ½ years ago. Her blood pressure shot through the roof and she was out of it. Luckily, it was a day when her assistant, a nurse, was there. And she took her to the ER. I was in Los Angeles at the time. She wasn’t getting better. I said to please let me know if/when I need to fly to NH, where they were. She was surrounded (the exact right week in the summer for this) by tons of family and friends. But of course, no one advocates like me. And clearly no one knew her like me. She’d been in the hospital for 2 days when I arrived.

This was not the woman I had seen a few weeks before. The woman I left was deaf, tired, a little confused at times, a bit repetitive, and might walk with a cane occasionally. This woman was completely out of it, could barely walk, and the 1 sign I saw right away: she reached for something with her left hand. She was right-handed. So that tiny reach was enough, along with slurry speech to know that she’d had a stroke.

I went to the nurse’s station to talk to the doctor. Me: “When did she have a stroke?” Doctor: “She didn’t. We tested her when she came in.” Me: “Test her again. She’s had a stroke.” There had literally been 20 friends and family in her room non-stop. My father, another story, hadn’t left her side since she’d been admitted. But no one thought that the doctors might not have caught everything. She was 91. They assumed she already needed a walker and had no memory. Later that day, her older sister came to visit. Bouncing in, no cane or anything. Fully dressed with makeup and jewelry, and being the bright light of energy she still is. I walked her up to the nurse’s station. Me: “THIS is my mom’s OLDER sister. THIS is what my mom was like a few weeks ago.” Doctor: “Oh!” Damn right, “oh”. How had they not asked the right questions to know the difference?

It’s a problem with our medical system that when people are admitted through the ER, they may be given a whole new team of doctors. Doctors that didn’t know what the patient was like a day before. So if their mental capacity or physical capacity is greatly diminished, the doctors won’t know. So you have to ask questions. You can’t assume things, no matter how old the patient is. I was very glad I was there. Although it was definitely the toughest week I’ve ever had. That was the week I lost my mom as I knew her.

My mom was tested for a stroke and it was found she’d had a unique type of stroke that was like 100 tiny strokes all over her brain. And they had no idea what it would effect. They kept her in the hospital for 10 days before moving her to rehab. After many weeks there, it was clear she could not go home, but would have to be in assisted living from now on.

In most ways, my mom seemed to recover fully from the stroke. She seemed to be herself. But the decline was quick and subtle at the same time. There are so many situations in life where the circumstances continue to change, but in such a slight way, that you don’t realize how different things are until it’s too late. And this was one of those situations. My mom still presented like who she was. She could convince anyone, including doctors that she was totally in her right mind. And being a little “off” to start with undoubtedly helped. But I knew that she was not herself at all. And yet it didn’t stop me from being constantly upset, angry, frustrated, teary, furious, sad, confused and just utterly mentally exhausted having to be with her. This woman. This woman that loves me tremendously, but is so challenging to be with for more than a few minutes.

My mom always had a brain for puzzles. Or criminals. She loved mysteries. And she loved trying to find answers. But it also made her not trust anyone. I’m sure there was much in her background that also contributed to that. But in her last few years, she’d become convinced that people were stealing from her. First it was stuff that almost made sense to steal: jewelry, antiques. But then it became pants, pens, a sweater, anything at all. And she was desperately upset that people were not believing her. Or really that I wasn’t believing her. Because other people were smart enough to just nod their head and say, “oh, sorry.” But I kept trying to reason with her. Even though people told me you can NOT reason with someone with dementia. But what she was accusing people of was SO illogical that I thought for sure if I said, “WHY would someone steal your pants?” That she’d realize how ridiculous it was. She’d leave little notes everywhere for the “thief” asking them to return things. Of course, all thieves return things when asked nicely? She said people kept telling her that she was hiding her own stuff. And that made her so upset. She swore up and down that she was not. And I thought she wasn’t. I thought she was remembering things from long ago and now she thinks they’re gone. Or something would fall behind something else and they’d never find it. When she left the hospital each time, and there were many times, they’d pack her stuff in big white shopping bags. Those bags would get sent home with her, but she’d never put anything away. So at one point I found scores of bags in their big walk-in closet filled with “missing” items from the past year or so. At one point, I showed her photos of her family jewelry that I had, to prove that they had not been stolen. She insisted that the thief must have returned them to me. For the last year, she wore a small bag around her neck that had keys to her lockboxes. When she passed, I had to look for the keys because they were no longer in the bag. One lockbox key got mixed in with 100’s of random keys, and the key to the other box was within that box. Took me weeks to get them open.

When someone has dementia, but doesn’t think they do, it’s an uphill fruitless battle every day. Trying to convince them that their memory plays tricks on them is temporary if at all helpful.

My mom had one thing in her favor. She was happy to go into assisted living. She was tired of cooking every day. She had no issue with me taking over her bills. And she knew what she wanted for end-of-life choices. So her Living Will and DNR were taken care of.

Unfortunately, both my parents had trusts. And Power Of Attorney doesn’t work for Trusts. They only go to the next trustee when that person has passed, or when they are no longer to handle it themselves. But almost no one is willing to say that they are no longer capable of controlling their own finances. Especially when trust issues abound. I asked her doctor for a letter saying she’s no longer capable of controlling her own finances and that I should be appointed. Her doctor wouldn’t do it. Instead, she wrote a letter saying that my mom was capable of appointing a successor herself. And so I had to write another letter saying that she appointed me, and get her to sign both. She had absolutely no idea what she was signing. It was 1 sentence long. But she didn’t understand it. And yet, her doctor thought she was fine?!

Towards the end, my mom kept saying that I was trying to keep her alive. I was not. Her body was keeping her alive. She had no illnesses or conditions that we were treating aggressively. No prognosis we were fighting. Her body, no matter how tired, would not give in. We had the DNR on the fridge, the hospice number on the phone, but we had to wait for her body to catch up with her heart’s wishes. She kept telling people that I was not ready to let her go. But I was ready 2 ½ years prior when I saw her in that hospital bed after her stroke. At that time, while in the hospital, I handed her a pad of paper and a pencil so she could sketch. But she did not understand anymore how to hold the pencil. I knew if she couldn’t paint, she didn’t want to be around. She began talking to the air as if her mother and grandmother were with her. I absolutely did not want her to continue in this state. No one wants to watch their loved one suffer and deteriorate. I would not be selfish enough to want her to stick around. I wanted those invisible loved ones to gently take her with them. But that didn’t happen.

That finally came 2 ½ years later. 2 ½ very long, very painful, very sad years. Her body finally gave out. And we got 3 days with her, knowing this was the end.

 

My Dad:

The early sign of my dad’s dementia was not subtle. But I still ignored it. I ignored too many things that I look back on and shake my fist at myself in the mirror and think, “why on earth didn’t I do something then?!”

As I mentioned, his personality changed. Always a challenge to get any affection or kind words, now he was softer and more reflective. That can be just as unnerving. I would tell people and they would say, “that’s so nice. He’s softening in his old age.” No. He has dementia and this is NOT him.

I have other friends with a parent who has narcissistic personality disorder. You spend most of your childhood wishing your parent would actually act like they cared about you. Or say they love you or are proud of you. I spent most of my life never hearing that from my dad. And when he was in his 90’s, it happened. He said the words I desperately craved when I was a teenager. But by then, not only was it too late, but I didn’t trust it. I didn’t believe it was him. I knew it meant he had dementia. And I did not appreciate the sentiment.

My dad will turn 98 in May, if he lives that long. So it was almost 8 years ago that we had a big party and reunion for his 90th birthday. A weekend of events. My dad, ever the showman (putting it nicely) requested a lectern and head table for his big dinner. We had 60 people. He told me that there should be speeches. Like a roast, or eulogies but while he’s alive. I told 3 people to prepare and they came from as far as the middle of the country to speak.

The dinner came, and I said to him, “Let me know when you want the speeches to happen.” He said, “Speech. Just one. Me.” I have never spoken as firmly to him as I did at that moment. “NO. You said people should speak, and I have 4 people who’ve been working on it and WILL be speaking tonight. So you tell me WHEN!” He knew to let me have this win. My father’s always been an amazing orator. But this night was not his best. When he did finally take over the lectern, his words went on forever and seemed to amble in no particular direction. Sign 1.

My boyfriend took photos that weekend in 2013. My father printed a photo and framed it, and wrote just below it: 1985. Sign 2.

As I’ve mentioned, my father’s challenging. He is perhaps the most stubborn man alive. And even when he was in the hospital for weeks, he would not let me go through his mail or even see if there were bills. He said they could wait. He couldn’t be in the hospital forever.

Over the years, several of us tried to convince him to stop driving. “Everything in town is within walking distance anyway. And plenty of friends would drive you places. And you always said in your later years you’d hire a driver.” “I did? No I didn’t.” I understand. Driving is one of the last signs that you’re still in control of your life. Your body. But again, subtle changes creep up until one’s driving is completely unsafe, and they don’t see it, or won’t admit it. And my dementia’d mom was certainly no help. She’d say, “Oh I won’t drive with him.” But then she would. She would say, “Oh, I won’t drive with him unless I HAVE to.” You don’t have to. Find another ride. If only there were cabs and Uber in their rural area. But there isn’t. And they don’t have smart phones to get one.

At one point, I was visiting them in their home and I heard a message on the answering machine (yes, they still had an answering machine) from the police asking for my dad. I asked him about it. He said don’t worry about, it’s all taken care of. “What is?” I asked. “I sideswiped a car in the parking lot across the street. It was nothing. I didn’t even know I did it.” I said, “You HIT a car and didn’t even know you did it?!” He got angry, “I didn’t HIT a car. I just sideswiped it! It’s fine.”

Well how do you argue with logic like that? If you don’t know that that’s NOT fine, I can’t convince you. But I definitely insisted on driving every time I visited. And started to call their friends asking for rides for them. Anything to get in the way of his driving. Just one of many ways I was pulling strings behind their backs for their own safety.

Years later, when they moved into assisted living, my dad finally completely gave up the keys for the cars and even sold them. Shortly after, I was at the doctor’s with him and he mentioned how he was going a little blind and had no feeling in his feet. And I could not stop myself from yelling, “AND YOU WERE DRIVING?!” I had asked his doctor for a note to the DMV many times, and he wouldn’t do it. I wrote to the DMV asking them to revoke his license. No luck. Aren’t they supposed to regularly test drive people over 80? Not my dad. He’s running into posts and cars and everyone just lets him keep going. I did have numerous conversations with him, and with my mother about taking away the keys. But it was never completely done until they moved.

As I said, my dad was never going to let me take over the bills, or take over the trust. For that, I had to get lawyers involved. And doctors writing notes (much easier than my mom), and friends to talk to him about paperless bills and autopay. And finally, after years of begging, he asked me to switch his bills to autopay. It took 10 months to eventually find all the bills that he pays on a regular basis. Unlike other dementia folks, he had never forgotten to pay a bill. No. My dad paid the same bill up to 3 times. How he thought he was still keeping immaculate records, I have no idea. And now, he doesn’t trust any of our financial statements. He’s convinced he only has like $20 in the bank. Luckily, that’s not at all true. But it’s also entirely because I fought to get control of his trust, his bills, and his accounts. Some things are worth the fight and this is one of those things.

Sign 3. My boyfriend and I were visiting my parents in their home. About 5 years ago. I was sitting talking to my dad. And he suddenly couldn’t speak. He didn’t have the ability to form words. It lasted maybe 10 seconds and then he was back. I saw it happen twice. I thought it was a TIA that passed. Which would mean a stroke could be coming. But they were actually mini strokes. And he had a ton of them. It wasn’t until the next day when, in front of a class he was presenting at, he had one in front of a nurse that said, “Call the ambulance. He’s having a stroke.” Would it have made any difference if I’d rushed him to the ER the night before? He’d been in the ER 2 nights before already for something else.

 When my mom was in the hospital and rehab, my dad never left her side. This sounds sweet, but it was incredibly irresponsible on my dad’s part. He had Parkinson’s and Diabetes. He has regular medicine and insulin to take. He needs good sleep and regular meals. None of the above could happen while barely sleeping at her bedside in a hospital. The nurses are there for her, not for him. He was completely unconcerned for himself, which undoubtedly contributed to his decline. Plus, he insisted that he could protect my mom. A 93-year-old man, without his meds can not help more than the doctors. It might be a little comforting to my mom, if she was coherent. But at one point, overnight, my mom who could not walk or function during the day, got out of bed, took off all her clothes, and walked, unassisted out to the nurses’ station and asked what party was going on. My dad slept through it. At one point my cousins took him home from the hospital to shower. They called me after he’d been upstairs for an hour asking how long it takes him to shower. He’d fallen in his closet and spent the next 30 minutes working up a sweat trying to get up. And yet, he insisted that he did not need help in any way.

When my mom was in rehab after the stroke, we were told that she could not go home. Too many stairs, too many rugs, not enough help. She was going to have to go to Assisted Living. This is how it often happens. Someone falls or has a stroke and now their home is no longer safe for them to return to. If we had not already looked at assisted living places, I would not have had an idea where to move them. I had a week to coordinate getting them into a unit. The place was kind enough to lend them furniture to start with. And I set up utilities, picked a moving company and attempted the most difficult conversations I’ve ever had to have with my father.

Me: “She has to go to assisted living. She can’t go home.”

My dad thought that was ridiculous. He could take care of her.

Me: “No you can’t. She needs nurses. She needs someone else to cook. She’s been cooking for YOU all this time. You don’t know how. We have 2 floors. She can’t walk. Do you want to go with her or not?”

My dad, that day, said he’d go wherever she went.

But each day his story kept changing: “We can go there until she’s better. Then we’ll go home.”

My dad: “I don’t want to look at the apartment. We’re not moving in there.” Every day I fought with him. Someone else convinced him to pick an apartment. But once they were there, he would call me to say he was leaving. “well,” I’d say, “You have no car, and no one’s going to drive you, and there are no cabs. So good luck.” I literally called friends saying, “If you see him walking along the highway, let me know. Don’t drive him home. Call the police.” He needed to be there just as much as she did. But he fought me every day. No grab bar. No hospital bed. No cane. No walker. The number of times he said, “I didn’t fall. I slid down the wall. I could have gotten up if I wanted to. I decided to stay on the ground and rest first.” On and on. Daily.

Did I know if his fighting was dementia or just his normal personality? I did not. But his sense of logic was certainly gone. He loves being with people. He loves activities and culture and meeting people. If he’d embraced being at the really lovely assisted living, he’d have made tons of friends quickly and enjoyed every activity. But instead, he sulked and snapped and complained and threatened. While my mom was super happy to be waited on hand and foot and never have to cook again. He insisted on fighting for every bit of independence he still had. He didn’t want to lose any abilities. But he had already lost them. I was trying to make him comfortable. Make their lives easier, safer. But they would continue to fight me on everything. Again, some fights you have to have.

A constant conversation I had with both my parents was to say, “I’m not trying to keep you alive. I’m trying to make you safer, healthier, more comfortable while you are still alive.” I was never doing any extraordinary measures. They’re not hooked up to anything. Just use the damn walker so you stop falling every 20 feet. Admit that you’re falling so we can get you physical therapy to help with balance. But no. He’d rather stay in denial.

In his late 80’s, my dad started falling. He made excuses for it every time. He tripped on his laces. He missed a step. His glasses weren’t sitting well for him to see. But at 90, he fell down the flight of stairs in their house and went unconscious for a moment, then woke up confused. My mom did not call 911 as instructed by me. She called ME. Within 1 minute, my dad was on the phone. “Who is this?! What did you call her?! I’m fine. Leave me alone.” If this happens to your loved one. Call 911 and get an ambulance there. The fact that he was never checked out by a doctor each time drives me crazy.

The next time I saw him, which was less than a week later, I knew he had Parkinson’s. His gait had changed, his face was more static, his dementia was more apparent. I called his doctor. “He has Parkinson’s.” “I haven’t seen any indication.” He said. “I don’t care. He has it. You have to get him into your office now.” The doctor said, “I can’t bring him in without cause. I just saw him recently.” I said, “Lie. I don’t care. You have to bring him in.” This fight went on for 10 months. My dad presents well, as many people do, in front of doctors. So they never see the signs that we do. At the end of 10 months, they finally tested and said yes, he had Parkinson’s. Very bizarre since he hadn’t shown any symptoms prior to that fall. But now it was obvious to several of us. Just not my mom. And she would continually forget he had it over the years. In fact, she’d forget and get upset that, “no one told her.”

This is not something that’s known. But people can still get diagnosed with Parkinson’s and other diseases at 90. I thought we were in the clear. My parents had out lived all the horrible diseases. But no. There’s little research on later Parkinson’s, because people that age usually don’t live long enough for a trial to follow them. But the progression can be slower and there are some medicines that can be beneficial. My aunt had Progressive Supranuclear Palsy. That’s also a motor-neuron disease similar to Parkinson’s and ALS. My dad never told his doctor that his baby sister had died from that. But if he had, his doctor might have looked closer for warning signs.

So now, I’m in a support group that talks once a week. I have a therapist. I have incredibly supportive friends and family. But I’m an only child and the brunt of this falls on me. I know my parents better than anyone. I know their needs and wants. I know their finances. I know what antiques in their massive house are from family and which are from auction. I know which paintings are done by my mom, even if they’re not signed. I recognize photos of them as children and every stage in between. I worry I will spend the rest of my life dealing with their stuff in the house, and the house. And I still have my father to advocate for in every way, whether he likes it or not.

I did not want to be a caregiver. I did not ask for it. I prayed that my parents would be healthy until they died in their sleep. But that did not happen. They started a slow, subtle decline that continues with my dad until this day. I had other careers. But now, my job is caregiver (mostly from a distance), coordinator, buyer, financial planner, accountant, advocate, doctor’s assistant, and everything else that goes with the caregiver role. This is a full-time job. It is not fun. It does not feel rewarding. I don’t wish it on anyone else. I would rather be doing almost anything else. But my parents would do this for me and so I must do it for them. They did their best for me, and I will do my best for them.

This is not an easy job. No two situations are alike. My parents are unique unto themselves and although some people have similar fights with their loved ones, each one is riddled with a rich history of its own. I did not know what I was doing or how to handle any of this when I started. It’s a learn-on-the-job kinda deal. I can not say how long my dad will live. Or what he’ll be like tomorrow. His path will not be exactly the same as that of your loved one. All I can tell you is to watch for the earliest warnings signs you can. Because the sooner you gather your team of support, the better. You will need it. Don’t stop asking for help from everyone, especially their doctors. Also their friends, their family, your friends, your doctors. You must continue to find ways to take care of yourself. And fight like hell, but only on special occasions.

Resources:

Early signs of dementia.

Older onset Parkinson’s

Progressive Supranuclear Palsy

 

If you are caring for a loved one, I highly recommend you join a support group. There are many through hospitals, aging resource centers, Actor’s Fund, Facebook and many more.

There are also many books on caring for aging parents, narcissistic parents, difficult parent, dementia care and much more. I highly recommend them

Feel free to post any more recommended books/films/resources.

 

 

Monday, January 11, 2021

Dear President-Elect Biden

 

Dr. President-Elect Biden,

 Congratulations on winning the election. I look forward to having someone sane running the country.

 I have never written to a President before. I waited until I had something I felt was important enough to say.

 When the pandemic hit, I had no idea what was coming. I was woefully naïve about how long it would continue to effect our daily lives. But I was encouraged by one single thought: That the President could absolutely no longer continue to say things like, “America First” and focus only on what’s “best” for the USA, because we were now in a GLOBAL situation. We would all be in this TOGETHER. It was a spiritual opportunity. And if we wanted to find solutions, we were going to have to work together as members of a global alliance. I stupidly pictured leaders across the world discussing what worked for their country, and others following suit. Sharing research, ideas, supplies and hope. That’s something I constantly wonder why we don’t do more of in general. What country has the best education system, the best health care, the least cancer, the happiest people, etc? But of course, I was terribly, depressingly, completely wrong. Once Corona hit the US, it was no longer an international story in the news. It became our story alone. I was again completely disheartened by our “leadership” and their total lack of foresight, compassion, understanding, and in fact, their humanity. I sincerely hope we will not continue to make the same mistake and miss the chance to unite with countries around the world and work together to bring this pandemic to an end. And I hope the media follows suit. I want to be as aware of what’s happening around the world as they are aware of our embarrassing daily news cycle.

 Those are the burning hopes I have for our country.

Since you’ve read this far, I would also like to say that I would have no problem understanding if you moved the inauguration to somewhere small and safe. Just televise it. We really don’t need to put everyone at risk.

Lastly, although I understand the importance of having senator’s and representative’s votes be known by their constituents, I also find there would be great benefit to have certain votes be completely anonymous. I believe in my heart of hearts that if there were anonymous votes on issues such as impeaching the President, you’d have a lot more votes agreeing with the democrats. Because Trump couldn’t threaten people if he didn’t know how they voted. I understand the legislative process in this country is based on transparency, but sometimes you need to make decisions behind closed doors to get things done.

 Please be safe. Please be healthy. And very best of luck in your new endeavor.

Sincerely, Tamar