“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.
