The Medicare Wellness Exam

I was working full time when I turned 65 and became eligible for Medicare (the American health system for seniors).  When I first enrolled in Medicare, I became eligible for an annual "wellness exam" fully paid for by Medicare  I got the first one, then skipped the next couple. 

This year, I decided to get it.

The good news is, I don't have dementia.

The nurse said I scored 100% overall.

But the questions...This was a trip down memory lane and a peak into my future.  And, perhaps, yours.

The reason for this exam is to have a personalized care plan based on your risk factors for various conditions.

The questions the nurse asked brought back the times I was a part time caregiver for my late mother in law.  I remember when they tested her for dementia and other conditions.  Some of the questions were too familiar.

When she had her tests, they asked her if she did her own cooking and housework.  She said "yes". But she could do neither.  She was speaking her truth, though. In the world of her mind she was still fully independent at a time where she needed home health care.

"Have you fallen in the past year?"  My mother in law fell....too many times.

Meanwhile, back in the present, the nurse read down the list of questions mandated by Medicare for this type exam.

"What day of the week is it?"  (I don't know why they ask this; every retired person I know has a problem with this.  As a part timer, I have to know when I report to work and when I don't, so I always know.)

"Do you need help eating, toileting, dressing, bathing?" (but if you do, I pondered later, what then?  Medicare doesn't pay for most home health care and getting the same is a nightmare for every caregiver I know.  And I do know a couple right now.)

"Do you have trouble managing your money or your medication?" Back came the memory of the day my mother in law denied she needed any of her many prescriptions, even when we showed her the bottles with her name on them.

"What year is it?" (My mother in law couldn't handle this one, nor did she know who the President was, given that she watched a news channel most of the day).

"What town are we in?"  With all the doctor visits I had this month I actually had to think about that for a minute.  They are all in different places.

"Write a sentence with a noun and a verb in it." (Don't they know I'm not the best with grammar?)

I passed the three word test, where the nurse tells you three words and you have to remember them a few minutes later.

Then came, for me, the stumper. The nurse said:  "You have a choice between spelling "world" backwards, or counting backwards from 100 by sevens."

"By sevens, is that what you want?", I said, disbelieving.  "Yes", she said.

I chose spelling a word  backwards.  I've always had trouble with spacial concepts and I'm surprised I could do it.  (Later, at home, my spouse, who loves numbers, did the "count backwards by sevens" without any hesitation.  Showoff.)  I did manage "world", to my surprise.

There were, though, the questions they don't ask during this exam.  The answers many in the United States would give are all too familiar.

"Can you afford your prescription medication?"

"If we order tests today, will you be able to afford them?"

"How hard is it for your caregivers to provide care for you, and how many times do people they hire to help out never show up, quit without warning or interview and then ghost your family?"

"Do the programs we are referring you to have a long wait list, not enough funding, or have an income maximum that is just low enough for everyone to be ineligible?"

I can't help thinking back to when I was a caregiver for my mother in law, and ahead to when I will need help, if I live long enough.

Our system is broken.  Ask the woman I know whose mother has dementia and other health issues and needs someone with her 24 hours a day.  Ask the woman trying to take care of her 100 year old father and help out her only sibling, who has a serious and possibly fatal illness?  I know both those people.

There are millions more.

It's nice to have a Medicare wellness exam, but our country must ask itself:  How much longer will we fail our most vulnerable?

The Safety Net Revisited

In 2015, I blogged about the fact that for the first time in many, many years, we would not be having Christmas with relatives in Yonkers, New York.  Earlier that year, due to health and other issues, we had to move my mother in law up to where we live, and about 150 more miles (approximately 241 km) away from those relatives.  

As my regular readers know, my mother in law passed away the day after Thanksgiving, 2018.

At the time I first wrote this blog post in December, 2018, my spouse's last living aunt down in a New York City suburb was getting ready to celebrate her 107th birthday.  She lived with her son, who took care of her.

In December, the son, who was in his early 70's, died suddenly.  We had last seen him at my mother in law's funeral.

Now, my spouse's aunt is gone.  She passed away last year, at the age of 107.

When her younger son died, the son who was living with her, there was a niece  who lived nearby.  She took the aunt in.  She had cared for both her parents years ago.  Her mother died, in her 90's, from injuries suffered in a fall.  Her father took the long road down Dementia Lane.  During that journey, the niece was diagnosed with cancer.  While being treated,  her father's caregivers ended up caring for her, too.

In turn, one of the aides that helped her father (and her) was available for the 107 year old aunt, and became a full time live in aide for the last months of the aunt's life.  Eventually, the aunt was deemed eligible for hospice care, remaining in the niece's home until her death..  But what if that niece hadn't been there?  Or if she (who, herself is a senior citizen) hadn't been able to step up?

The path of a caregiver is a hard one.  The caregiver doesn't take care of him or herself, sometimes with tragic results. 

Late last year, our office of aging reached out to me because I had been unable to attend a "focus group" on what caregivers in our community need.  I never answered that email.  But, instead of answering their questions directly, perhaps I should just describe what is happening around me.  I never did, but now I have another chance.

It scares me.  Our social safety net is fraying.  Will it rip before my spouse and I reach old age?

The Safety Net

In 2015, I blogged about the fact that for the first time in many, many years, we would not be having Christmas with relatives in Yonkers, New York.  Earlier that year, due to health and other issues, we had to move my mother in law up to where we live, and about 150 more miles (approximately 241 km) away from those relatives.  

As my regular readers know, my mother in law passed away the day after Thanksgiving.

At the time I first wrote this blog post in December, 2018, my spouse's last living aunt down in a New York City suburb was getting ready to celebrate her 107th birthday.  She lived with her son, who took care of her.

In December, the son, who was in his early 70's, died suddenly.  We had last seen him at my mother in law's funeral.

Now, my spouse's aunt is gone.  She passed away last week, at the age of 107.

When her younger son died, the son who was living with her, there was a niece  who lived nearby.  She took the aunt in.  She had cared for both her parents years ago.  Her mother died, in her 90's, from injuries suffered in a fall.  Her father took the long road down Dementia Lane.  During that journey, the niece was diagnosed with cancer.  While being treated,  her father's caregivers ended up caring for her, too.

In turn, one of the aides that helped her father (and her) was available for the 107 year old aunt, and became a full time live in aide for the last months of the aunt's life.  Eventually, the aunt was deemed eligible for hospice care.  But what if that niece hadn't been there?  Or if she (who, herself is a senior citizen) hadn't been able to step up?

The path of a caregiver is a hard one.  The caregiver doesn't take care of him or herself, sometimes with tragic results.

Late last year, our office of aging reached out to me because I had been unable to attend a "focus group" on what caregivers in our community need.  I never answered that email.  But, instead of answering their questions directly, perhaps I should just describe what is happening around me.  I never did, but now I have another chance.

It scares me.  Our social safety net is fraying.  Will it rip before my spouse and I reach old age?

Caregivers

In 2015, I blogged about the fact that for the first time in many, many years, we would not be having Christmas with relatives in Yonkers, New York.  Earlier that year, due to health and other issues, we had to move my mother in law up here, and about 150 more miles (approximately 241 km) away from those relatives.  And, as my readers know, my mother in law passed away the day after Thanksgiving.

One of the relatives down there will be 107 years old early next year.  She lived with her son, who took care of her.

Yesterday, the son, who was in his early 70's, died suddenly.  We had last seen him at my mother in law's funeral.

Now, he's gone, too.


And at the funeral home, I spoke to one of my husband's cousins, who had cared for her recently deceased husband (dementia) for years, and wrecked her health in the process.

I know so many people who have lost loved ones in the last two or three weeks.  A co worker lost her father. An acquaintance of many years lost his elderly aunt (he helped take care of her), while trying to raise three young children as a single father.

The path of a caregiver is a hard one.  The caregiver doesn't take care of him or herself, sometimes with tragic results.

Recently, our office of aging reached out to me because I had been unable to attend a "focus group" on what caregivers in our community need.  I really need to answer that email.  But, instead of answering their questions directly, perhaps I should just describe what is happening around me.

It scares me, thinking about who else might not survive this winter.

The Non-Persistance of Memory

They got out of the vehicle and walked into the chapel.  "They" being Prince Phillip, 96, and Queen Elizabeth II, his wife, 92.

They weren't assisted. They walked without canes or walkers. They had their memories, and fully participated in the events of today.

We had a wonderful time watching the royal wedding this morning, even waking up early to see it.

Later in the day, we visited my mother in law, 90, along with two relatives visiting from out of town.  My mother in law is in rehab after three hospitalizations since the beginning of April. 

She can't get out of bed by herself.  She needs assistance for many of what are called, in the United States, the "Activities of Daily Living" (dressing, continence, feeding, transferring, bathing).

Mother's Day, last Sunday, was good for her.  She had shrimp Newburg for lunch, courtesy of the rehab place, and then an Ultimate Chocolate Cake we bought for her.  She wore a wrist corsage.   Her grandson was there.  All three of her sons were there.  Her two daughter in laws were there.

Today, she didn't remember any of it.

Tomorrow she may not remember the out of town company that spent several hours with us, or the other relatives she FaceTimed with on their iPad.

Watching Prince Phillip and Queen Elizabeth II made me wonder:  is it just us?

Does dementia exist in other countries?  Are people this infirm?  Is it a function of our environment?  Our relative inactivity?  Has "modern medicine" failed us?

But my mother in law was never inactive. 

At one time she was so sharp we joked that she was sharper than either of us.

The other day she sat in the sun and asked two of her sons if it was sunny.

Yesterday, she couldn't remember where her autistic son lived. 

She steers conversations to the past, talking about her honeymoon (in 1950) as if it was yesterday.

And it's only the beginning.

One day, we know, she won't recognize us.  Already, she has forgotten that I work, and wondered (one day when I visited her on my lunchtime) where I had gone.

Without memory, do we even exist anymore?

The March of the Jurors

A march around a courthouse made my spouse wonder.

Yesterday, my spouse was called to jury duty, a civic duty required from time to time for those who live in the United States.

For the benefit of my readers who do not live in the United States, here's a brief explanation of what jury duty is like.  

We use a jury system to try people accused of crimes.  A jury of "their peers" decides guilt or innocence.  Each week, a pool of people is called - juries are selected.

For my spouse (who ended up not having to serve-the case did not go to trial), he saw some of the experience through the eyes of someone else - his elderly mother, who has mobility problems.  And, it made him wonder.

The jurors had to gather at the Broome County courthouse, in downtown Binghamton, New York.  As part of their duty, they were marched a couple of blocks - and up a flight of outdoor steps.  Then, after the case was disposed of, the same thing in reverse.

At least two of the group were using canes for mobility.  No ramps or other help for disabled was evident.  The people using canes had to walk, and use those steps.  There are a lot of elderly in our area. 

Normally, at this time of year, there might have been snow on the ground, too.  Fortunately, we are having mild weather.

Nevertheless, it made my spouse, and me, wonder.  What happens to the citizens who can't take the march of the jurors?

What if my mother in law had been called?  She needs a walker.  She is prone to falls. We, and his brother/wife, are her caregivers. What would they have done with her if she had been called to jury duty?

Those days, for her, may be over.  A woman of pride, would it bother her if she was not able to take the march of the jurors, and may have needed to be excused?

I hope we never have to find out.

Have you served on a jury?  What was your experience?

Today is day 17 of NaBloPoMo.

The End and the Beginning

A chapter has closed.  Another one is ready to be written.

I stare at the blank pages of today, ready to be written on.

My mother in law and developmentally disabled brother in law now (as of yesterday) live about two miles from us.  We, and my sister in law and her significant other, with help from several family members (you know who you are, and I thank you once again) survived the downsizing and moving process.  My mother in law and the brother in law I call "B" have arrived, and spent the first night in their new home last night.

I can not put myself into the heads of my mother in law or brother in law.  My brother in law has autism, and this process has been hard for him, perhaps harder than for any of us.  He just doesn't show it in the same way.

My mother in law is still recovering from heart valve replacement surgery.  She is trying to gain strength and health back.  It is a battle, at her age.

We all have a lot of adjusting to do. Mother in law and "B" must adjust to a new area, a new home, and apartment living.

We must adjust to them being two miles away and not 150.

It will be a "process".

Now the REAL work begins.  We all have to take it one day, maybe one hour, at a time.

Wish us all luck.  We are all going to need it.

Just Another Day

This weekend, I visited my mother in law with my spouse and son in an area North of New York City.  We wanted to spend Mother's Day with her. 

Tired, my mother in law went to bed early Saturday, and I turned on my computer.  Trending on Facebook was a news item. It got my attention quickly.

A transformer at a nuclear power plant had exploded about 6 pm.

The Governor of New York was giving a news conference.

At first, we were told all was well - well, sort of.  There had been a fire.  But the reactor had shut down safely, as it was designed to do.

My mother in law lives about 16 miles from that nuclear power plant, which is called Indian Point.  On the highway, near her exit, is a sign announcing an evacuation route.  We passed it Saturday without much thought.

Now, the public is being told that runoff from fighting the fire may have entered the Hudson River.

Indian Point is about fifty miles north of New York City, and the Hudson empties into the ocean at New York City.  This is not news welcome to anyone living along the Hudson, including the eight million odd people living in New York City.

I had a nightmare thought about what would happen if my mother in law and my developmentally disabled brother in law did have to be evacuated.  It could happen, but, more realistically (I think) it would be due to weather than due to nuclear disaster. Yet, living some 150 miles from them, it has worried us for years.  In a snowstorm, for example, it might be difficult to reach them as we have to pass through the Catskill Mountains.


A potential nuclear disaster 16 miles from family?  Just another day in the life of a long distance caregiver.

But Will He Press the Button?

It was just a somewhat typical day, living three hours away from a mother in law in her 80's and her son with autism, my brother in law "B".

My spouse and I had last visited my mother in law and "B" over the Memorial Day weekend (the last weekend in May, here in the United States).

For several years, my mother in law has subscribed to one of those medical alarm devices that we used to poke fun of when we were younger.  Now that we are in our 60's and have an elderly relative we care for, it isn't so funny any more.

In fact, I don't know if I should laugh or cry at this parody of the old "I've fallen and I can't get up!" commercial.  Black comedy? or bad taste?

My mother in law has a device she wears on her wrist with a button she is supposed to press if she falls. Pressing the button calls a service that will summon help for her.  At one time they even kept a record of her medications, but, due to privacy concerns, they won't any longer.  The only problem is, she doesn't seem to wear it all the time - or, I suspect, even most of the time.  (Frustration).

On our last visit, we noticed a light flashing on the main alarm unit, which is near her kitchen telephone.  We talked to the alarm service.  The agent thought the button was dying, and said they would send a new device.

Except one never arrived. (This happened once before, incidentally, when they needed to send a new device. We had to call twice because the first one never arrived.). So my spouse called their service number. 

First try: recording said a 20 minute wait.  Called back a few minutes later.  Second try: recording said a 20 minute wait.

Spouse had another number. He called that and the recording didn't even identify the company - just said "Leave a message".  So much for try #3.

On try #4, spouse heard an option to leave a message and someone would call.  He did that and someone finally called.  The agent wanted to test the units remotely (she has two) to see if either one or both were no good. Spouse explained he was three hours from his mother.  So the agent said he would call her.  My spouse said "Wait, let me call my mother first." She does not answer the phone if the number is unknown. Spouse called, she answered and all (we hope) will work as promised.

Turns out the service had the wrong zip code on file. They are going to overnight something to my mother in law.  But, that isn't the end of our story.

One more question remains, one that I pray we never have to find out the answer to:

If my mother in law falls, and is conscious, she can press the button.  But if she is unconscious, will "B" press the button (or, in the alternative, call 911) for her?  He's been shown.  But it's not something we can figure out a test or routine for. It will be a one time thing.

My mother in law thinks he will call.  I only can hope she is right.  None of us know how we will react in an emergency until it happens.

Tomorrow and Saturday, I will be blogging on other topics.  But I will return to "B" next week.

Sustainable Saturday-Aging in Grace

 As some of my readers know, my spouse and I are long distance caregivers for my mother in law, who is in her mid 80's and went through radiation treatment for cancer earlier this year.  We are also advocates for my spouse's youngest brother, who has a developmental disability called autism.  By choice, my mother in law has chosen to keep that son at home, and has refused other housing choices for him.

There is a movement in my country, the United States, called "aging in place".   The hope, for many aging people, is that they can remain in their homes, perhaps with some various modifications. And, part of this movement involves entire neighborhoods. Sometimes, as communities evolve, they become what is called Naturally Occurring Retirement Communities.

For example, this is the biggest Naturally Occuring Retirement Community in the United States.

This is Co-Op City, in the Bronx, one of the five boroughs of New York City.  When it opened in late 1968, many people I knew moved there - people raising families.  Now, those people are retired, and many are still there.  You can say that a Naturally Occurring Retirement Community is an organic expression of a true community, as people of all ages live together, and all of their needs are met.

My mother in law, miles away, has lived in her house for some 50 years.  During that time, it has gone from being in a semi-rural community (she lived near a chicken farm, right off a dirt road) to a suburb of New York City. 

Now she is a widow living on social security in a place where taxes are high, and food and other things are way more expensive than where we live in upstate New York. But, she doesn't have access to many of the services she would be eligible for if she just lived a couple of miles south of where she does live.  She's in a county that is still basically rural, and the services she needs just don't seem to be there. 

Her area is not in a Naturally Occurring Retirement Community.  She's struggled to keep her independence, but the house that seemed good for her and her family when she and her husband were raising several children is now a trap for her.  It is a split level, and her mobility continues to deteriorate.  She has knee issues, and her physical condition rules surgery out.  There are stairs everywhere. 

I certainly didn't take aging into consideration when my spouse and I bought our house.  We were in our 30's. I didn't yet have a bad back and arthritis in one knee.  We are fortunate, because we have everything we need on one floor except our washer and dryer - when we bought our house it was a ranch, and we added a second floor after our son was born.  And, we live in a community with more services for seniors than some other counties in New York State.

It could be better.  But it's a lot better than the community where my mother in law lives.

Yes, we all make decisions that seem right at the time, but times change.  We can all hope that we get the opportunity to Age with Grace. 

Soon, we, and her, are going to have to make some hard decisions.  The one piece of good news is that my spouse's application for guardianship of his brother in law is moving forward, and will be heard in court sometime in June.

As a result of the latest events, I may be rerunning some classic RamblinwithAM posts in the coming weeks.  I hope you enjoy these glimpses of material from the five years of this blog.

"One More Garden For My Mom"

This is taking place today in a city in the United States.

All around his house, neighbors are having parties, having family over for a holiday whose purpose is to remember those who died in war, and all those who served in the military.  But he isn't home.

He's in the rehab wing of a nursing home.

By now, he should have been starting his garden. It's unimportant where the garden is.  It could be anywhere. 

He's gardened for many years, this man who is now in his late 60's.  He never married, never moved away from home.  He's lived in the same house all his life.

Now, his mother is 101 years old.  A year ago, when she turned 100, the local newspaper commemorated the milestone.  She's a feisty woman, his mother.  I've known her for over 40 years.  She's a gem, and when we say goodbye, we declare our love for each other.

At her 101st birthday party, people flocked to her.  The owner of the restaurant, one she has gone to for many years, came over to shake her hand.  By the time you are 101 years old, it doesn't matter what type of person you are.  You are instantly famous.  All you have to do is look at the person and say "she/he's 101 years old!".  And everyone stops, and ooohs and aaaahs.

The years, in some ways, were kinder to his mother than they have been to him.  A couple of years ago, he was in this rehab wing.  Now, it's his mother's turn.

For her first hundred years, she never took prescription medicine.  She kept house, cooked from scratch, picked wild greens and flowers, took care of her son.  Now, their roles have reversed.  He must take care of her.

She doesn't want help. She wants to be able to move, to cook, to clean, to keep up with current events.  She does not want to be in rehab.  But she was put there after her third hospitalization since October of last year.  She trains as an athlete might, but her goal is not competeting in the Olympics-it is of trying to find a new normal.  For her, it is being able to stretch, to move, to walk.  She takes therapy for hours every day.  She works the exercise machines.  She hopes to come home in another few days.

While she works out, her son keeps her company.

He dreams of putting his garden in.  "I want one more garden for my Mom", he tells my spouse.

I think we all fear she won't reach 102, this woman who was alive when the Titanic went down. When soldiers went off to war in World War I, she was there. When they returned with the "Spanish Flu" and millions died, she was there. When solders went off to war in World War II, she was there.

And now, they are dying. Their memories die.  Our connections with those events die.  But, maybe not just yet for the man's mother.

The man will plant his garden. And, life will go on.

"Guest" Post - What Should a Caregiver Know About Physical Abuse of an Elder?

Today, I am featuring a "guest post" - actually a post from the blog "The Intentional Caregiver" that I am posting with permission..  

This is part of the power of the Internet - to be able to share information. Thank you, Shelley Webb, for posting this "must read" article for any caregiver.  I wasn't able to use it when I originally contacted you several months ago, but here it is now.   

As some of my readers know, I am a long distance caregiver for my mother in law, and for my brother in law, who is developmentally disabled.  And sadly, this kind of thing happens. 

We have used a geriatric care manager, and I can tell you without hesitation - a good one is (to quote the cliche) worth their weight in gold. 

What Should a Caregiver Know About Physical Abuse of an Elder?

As a caregiver, you may be providing actual physical care to your loved one or you may be supervising home healthcare providers or staff members in a facility.

If ANYONE besides you is providing care to your loved one, it is important to examine your loved one for signs of physical abuse, which is, of course, illegal, and should be reported to authorities.
The first rule of thumb is to ask the care recipient if anyone is hurting them. (This should be done when hired caregivers are not within hearing distance.) Observe their reaction when they answer.  Their body language may say more than their words.

Look for bruising, bumps (especially on the head), blood on clothing, bedsheets or furniture.  Do keep in mind though that many seniors may be taking prescription blood thinners which can cause bruising and bleeding, so if your care recipient is capable of answering, just ask them what happened. If they cannot speak for themselves, investigate further.

Seniors also may be prone to falls and while this is not abuse, it is important to note, because they may require additional care and/or a doctor’s visit to determine why this is happening. If falling is frequent, are there safely precautions in place?

If your loved one is bed-ridden, or spends a great deal of time sitting propped in a wheelchair, check for signs of skin break-down.  This can be a sign that they are not being turned (neglected) and that is also considered physical abuse.

Are they being cleaned appropriately?

Is there unexplained weight loss?  Are they being provided enough fluids and nutritious foods?  Are their caregivers taking the time to sit with them and help with feeding or is the food just being discarded. (Look through the trash if they are being cared for at home.)  Show up at mealtimes if the loved one is being cared for a facility to determine if staff members are assisting with the meal of if the food tray is just being left at the bedside.  Is there water within reach?

If your loved one is on oxygen, where is it?  Are they wearing their cannula or is it on the floor or rolled up on the oxygen container?

If your loved one is being cared for by hired professionals, the more time that you, a family member or a designated advocate spend with your loved one, the better.  It is a sad but true fact that the more a family visits their loved one, the more important that elder will be perceived and the better the care they will get.

You’re most welcome to use this article on your website, blog or in your e-zine if you include this entire blurb, without modification: If you liked this article by Shelley Webb, you’ll want to hop on over to www.IntentionalCaregiver.com where you can find more articles, resources and support for caregivers of aging parents and loved ones.   Geriatric care manager, Shelley Webb has been  a registered nurse for over 30 years and was blessed to have cared for her father in her home for more than 4 years.

Winter Storm Heartburn

So....we are under a winter storm warning here in upstate New York.  So, I am posting early just in case our power goes out.  I think it is just going to be snow where we live (amount unknown) but where my aging mother in law lives, it is going to be a blizzard.  And people who could normally take her in are in the same situation.

This is when long distance caregiving gets interesting, because my elderly relative is so resistant to leaving her home for any reason.  We were able to get her to safety for Sandy (a combination of a relative and a family friend took her in) but this time the caregivers may be in a worse situation than she will be.

We are working on it.  Oh, what fun....please, let me remember this so I don't put my son through this type of thing when my time comes.

The Dreaded Phone Call

There's one thing every caregiver dreads, and knows she or he may get one day.  I thought about that a lot today, at the end of an interesting January.

The Dreaded Phone Call.

I can remember back in my 30's, when I lived about 1400 miles away from my father.  My father was in his early 70's and suffered from various health problems.  I was fortunate because his younger sister was his caregiver.  Still, I feared for the day I would receive The Dreaded Phone Call.

And one evening, in January of 1986, it came.

I'm only at the beginning of my present long distance care giving journey with my mother in law, and I've already found so many "fellow travelers"in co workers and people I meet in other settings. (I will note here that when I was growing up in the 50's and 60's, "fellow traveler" meant something completely different.  Maybe it still does.)  Some of them have already received The Dreaded Phone Call.  Others await it.

It isn't necessarily a "someone has died" phone call at 10pm, as you prepare for bed.

For one fellow traveler, it came right before Christmas when she got a phone call telling her that her fiercely independent 90 plus year old mother in law had broken her collar bone in a fall.  It would be the end of the in law's independence and the beginning of countless hours of stress for this fellow traveler.

For another fellow traveler, it came today in the early morning, when a relative called to say her mother had fallen, and he couldn't get her up by himself. Between the two of them, they finally got her up.

But then, she fell again.

The fellow traveler was realistic.  She knew she would get these calls again and again, until one day, when she knew she would get the true Dreaded Phone Call.

I am one of several long distance care givers for my mother in law.  We are quite aware that we may be watching what will happen to us in 20 or so years.  And we wonder, why does it have to be that way?  We all - all of us - have to make it up as we go along. There are no manuals.

Our aging parents, so many times, haven't made plans for this day.  And you know what?  They were care givers for their parents.  They should have known better, right?  Well, will we know better?  Will we remember what our parents put us through and not put our own children through it?

Or will the cycle continue, generation after generation?

When will each of us generate our own Dreaded Phone Call?

Three Women in Their 90's

I was going to write about a woman in her 90s today.  I don't know the woman.  I do know her daughter in law, not well, but I do know her. 

Today, these things happened here in the United States.

1.  Betty White turned 91.
2.  Dear Abby, 94, died.
3.  My acquaintance went to DSS to apply for Medicaid for her mother in law.  The mother in law had refused to make plans for long term care, to the despair of her children. Last month, the mother in law fell and now needs 24 hour care, at least for the next few weeks. The lack of planning has turned into a family nightmare and my acquaintance bears the brunt of it.

In a way, these stories all have something in common.

Betty White:  she is one of the most beloved American actresses.  She has been in show business for over 70 years, and I have loved her since the 1960's.  My first memories of her were her starring on the game show Password, hosted by a man, Allen Ludden.

Betty ended up marrying her host, who died too young. Betty never remarried.

So many of us baby boomers remember Betty White as Sue Ann Nivens on the Mary Tyler Moore show.

And, there was Betty White's classic "Muffin" sketch on Saturday Night Live just a couple of years ago.  I saw it, and it was so funny.  I don't dare post it on this PG blog.  Even today, at 91, Betty White still appears on TV and has her own TV series.  She is incredible, and I love her.  She is what all of us dream for if we make it into our 90's.

But not all age 90 stories end well.

On this happy Betty White birthday, we also received news that "Dear Abby", Pauline Phillips, had died, at the age of 94.   

Phillips gave up her column of many years in 2002, due to Alzheimer's.   It is now written by her daughter.  Alzhemier's is everybody's nightmare, no matter where in the world we live. Let us remember Dear Abby for what she accomplished, not how she died.

To young people, I can't quite explain just how important the advice columnist Dear Abby was in our lives back in the 60's.   The letters people wrote her, and her responses, were classics. 

There was no Internet back then, no texting, no Facebook.  How quaint, to write a letter to someone you didn't know, for advice.  But millions of people did it, and lived by that advice.

And finally, there's the mother in law of my acquaintance.  She wanted to be independent.  But she would not work with her children.  She didn't want to face what might eventually happen.


So many of us baby boomers today celebrate with Betty White, mourn with the family and fans of Pauline Phillips, and try to be the best caretakers we can be to our elderly family members.  We can wish for the 90's of Betty White but sometimes we end up with the 90's of Dear Abby - or, my acquaintance's mother. 


Do you have memories of Betty White and Dear Abby?  Or find yourselves a caregiver to elderly parents?

The Thing We Dread The Most

This was not a good day for those who are caregivers for their elderly relatives.

Someone I know returned from some time off and told me that her mother in law, who is in her 90's, fell and broke her collarbone right before Christmas.  This fiercely independent woman now requires 24 hour care.  The family had to scramble to find this care, with no idea how they are going to pay for it.

Today, several of us, mostly single, got into a discussion concerning how we would be taken care of when we grow old.  We hope so we won't give our caregivers the same heartburn as our elderly give us, but we know that won't be true.

And, my brother and sister in law called.  They visited my mother in law over New Years.  We had visited over Christmas, but had to leave earlier than expected due to a winter storm bearing down on us.  My in laws had more time to visit and interact with my mother in law on their visit than we did the week before.  Their report expanded on some things (not good things) we had observed. (My brother and law and I live about 1/2 hour from each other, and my mother in law is about 3 hours away from us.  It can be an impossible distance when the weather is bad.)  Action is needed.

What is the thing we dread the most?  I don't think many of us in our 50's and 60's dread death itself as much as we dread the dying process.  Some of us are fortunate enough to be raised by loving parents, or find in laws we grow to love as much as our natural parents.  Some of us come to this stage out of duty.  Either way, so many of us, during our lives, will be caregiving for elderly parents or in laws.  Or both.  We see how once energetic, involved, vital, people fade away physically.  Or mentally.  Or, worst of all, both.

For me and my spouse, there is another involved party.  His brother, my brother in law, is developmentally disabled with a condition called autism.  He's lived with his mother all this time because my mother in law wanted it that way. And now, his future is up in the air, too.

Up to now, I haven't blogged much about this part of my life, because I've felt that younger readers would not be interested.  But, this is part of my life and I now need to share it with my readers.  I had thought of starting a different blog just for this part of my life, but caregivers don't have time for two blogs, much less one.   So I have decided to report on this the same way I report on gardening, post my photography, and discuss and other things in my life.

I hope you will join me on this new, double journey - increased caregiving to my mother in law, and increased involvement with my brother in law.

Have you had the experience of caregiving for your elderly parents or in laws yet?

A Darker Shade of Writing

I'm taking a break from my normal Wednesday feature, as the snow comes down. We are supposed to get 6 to 12 inches of snow before it turns into a "wintery mix".

The last month has been interesting - not necessarily in a pleasant way.

A 100 year old relative hospitalized twice. I saw her last in October, and yesterday, she seemed so....frail.  She had a wonderful appetite and stuffed herself.  When the talk turned to Newtown (so many discussions nowadays do....) she immediately voiced her opinion.  Bless her, not only does she have all her mental facilities, but she keeps up with all current events.  But she barely escaped being put into a nursing home, this last time.  Against medical advice, her son, who himself suffers from various health issues, brought her home.  I can only hope things work out, because these relatives do not have much in the way of money.

It's the moment we all dread - the moment many of us eventually have to face with aging parents-what to do? Her problem, thankfully, was not a fall, but something that can hopefully be controlled with medication for a long time. 

And then, there is the situation with my mother in law.  We live 150 miles from her, which makes us long distance caregivers.  She falls several times a year and her last fall was about two weeks ago.  At least this time she told her daughter, who is the closest in distance to her, about the fall. She aggravated an old injury from another fall, and is suffering with back pain.  Because of medication she is on, she can't take much in the way of pain killers.  She hasn't been able to walk without support for a while, but she may have to transition from a cane to a walker.

Driving is more and more difficult and her county, a relatively rural NY county, does not have much in the way of services for its senior citizens. 

She's stubborn and it's great for her spirit and morale, but not great for her three non-disabled children, who she doesn't listen to until she hurts herself, and then it is too late.  There is also the added complication of the fourth child, a man in his 50's who has autism.

I really haven't talked about some portions of my life up to now.  I'm doing some heavy thinking these past few weeks, wondering if I should talk more about these issues I face as an aging baby boomer - or if it will turn off my younger readers if I do.  And, if I should talk more about some of the other issues we here in the United States are facing.

So, I will ask my readers:

Should I talk more about issues like aging, long distance caregiving and adults with autism?  I wouldn't give up the photography, and talking about gardening and sustainable living, but this is a direction I want to take with my blog.

What do you think?

More Adventures with Autism

Regular readers of my blog know that I have a brother in law with a developmental disability called autism.  My brother in law is in his 50's and lives with his elderly mother (her choice).  We live about 150 miles away. As anyone who has ever done long distance caretaking knows....it can be an adventure.

One thing is for certain when you have a loved one with a developmental disability.  Life is never dull. There is a constant learning process, a constant advocacy process.  And you learn a lot of things:  patience, the need to be assertive without being aggressive, the need to network and make contacts. And, to keep on top of things.  We don't always do so well on the latter.

I had reported a month or so ago that there were some changes in my brother in law's "service coordination" which we needed to check into.  Here, I have to explain that my brother in law receives service coordination under something called a Medicaid Waiver.  In NY State the particular waiver is called the Home and Community Based Waiver.

Medicaid has a very bad "name" with the general public but in reality it is a lifeline for many families with disabled members.  Of course, keep in mind that what I am writing about is happening in New York.  Each state has its own Medicaid program.

At the same time, when you deal with government bureaucracy, there is the "Catch-22" factor.

To set the stage for this: disabled people on this particular Waiver receive "Medicaid service coordination" from an agency.  For my brother in law, it is his local "ARC".  And, NY is cutting budgets, as are many states.  On top of this, my brother in law's service coordinator was retiring due to health reasons.  My mother in law requested we contact the new coordinator.  So we're sort of in a Perfect Storm situation.

We made contact (after several phone calls, which is typical) with her supervisor back around the 19th but with our Civil War trip the blog post I wanted to write got swallowed up.  But I really need to talk about this now.

The supervisor told us that there have been changes in NY service coordination rules. For example, the service coordinator used to have to visit with the client (also called the "consumer") one a month.  Now it is 3 times a year.  But then came the bombshell...

My brother in law was losing his Home and Community Based Waiver.  Why?  Because he hadn't used any services in the past year.

And why wasn't he receiving services?  Because the ARC was never able to find someone to provide the services our brother in law needed. (this has been ongoing for several years, incidentally.  It's complicated why - I'm sure the wages they are able to pay in what is basically a very high cost of living area has something to do with it.)

Gotcha!  Catch-22!

Well, my spouse (who made this phone call) wasn't about to take this lying down, which is where the assertiveness and advocacy part come in.  And basically, the supervisor ended up agreeing that it was a lack of provider, not a lack of bro-in-law using the services, that was the concern. And that he really needed these services (training to help him become more independent, which would help his aging mother out tremendously, too.) So they are going to keep trying.  But then:  "if we find a provider it will be no problem to get him back on the Waiver."  Which is....well, there is another rule when dealing with government.

Don't believe it, ever, when they say anything will be "easy".

It was hard enough getting him onto this waiver.   And now it is going to be easy to get him back on if they ever find someone to provide these services?  Forgive me for taking this one with a few bags of salt.

So anyway, they sent us some paperwork to review, which we got the other day.

And now, the new service coordinator has called us, so we will start on another round of missed phone calls and phone tag.

Isn't it fun and exciting? 

The Fallout from Falling Friday - and a Senior Moment

On June 17, I posted about a fall I took while exercise walking on the West Side of Binghamton, NY. (I'm about 99% healed, and I thank everyone who commented on the fall - I appreciated your support.

What I didn't know at the time is that two other people I know fell the same day, which I had called "Falling Friday".  I didn't know about either incident at the time I made the post.  An acquaintance fell in downtown Binghamton (and then had to drive to North Carolina, which her husband did while she spent the trip with her ankle iced and elevated.)  The other person was the 90 plus year old mother of a very good friend.  She had a dizzy spell and fell into a china cabinet, breaking the glass.  She spent two days in the hospital and was released.  The doctor thought it was medication prescribed her after a value replacement.

So when I read this article written by a medical blogger, I got scared. I got really scared, because there are other elderly people in my life.  Like a 99 year old aunt in law, and my mother in law, who is in her 80's.  Thank you. Laura Newman, for writing this very important article. 

Do you have an elderly family member you care for? Or care about?  A friend?  Someone's friend?  Please read this article.  The life it saves may be your loved one's.

After all, how many of our elderly live their lives without taking medication?  Very few.  Yes, medication can be lifesaving.  I have a medical condition for which I take medication and I can also tell you that without modern medicine, I would not now be alive.  I suspect some of you reading this post could also make this statement.  Modern medicine can be a miracle.

Or, it can kill.  At least, the improper practice of it can kill.  Like fire, modern medicine has two "sides".

So again, please read the article.

Please educate yourself about the risks of overmedication, especially in the elderly.

Not that long ago, my husband took a AARP driver course (in NY, it allows for a credit on your car insurance).  One of the things the course covered was the fact that, in the elderly, medicine can work differently than in younger people.  It can cause some very serious side effects.  So, please take this article very seriously.

Now, what about the "senior moment" in my title?  When I think about how modern medicine can kill when not used properly, I take a moment and think about my spouse's 99 year old aunt.  She is so stooped over it is painful to watch her walk.  But her memory is sharp.  Her wit is intact.  She is a joy to be with when she visits my mother in law and we can spend time with her.  She lives with her son, still does cooking and housework, and loves to socialize with family.  Until the past 3 or 4 years, I am not sure she ever spent a day sick in the hospital.  I am so happy to be able to spend this moment thinking of her.

Oh yes, there is one other thing.

She is not on any medication.  She enjoys "spring tonics" and follows (much of the time) a vegetarian diet.  She loves life.  If she lives into next January, she will welcome her 100th year.

Coincidence?

The Thank You BBQ-Or, Adventures in Long Distance Caregiving

Yesterday was a day I wished was not necessary, but it was a happy occasion nevertheless.

My mother in law is now 83 years old.  Earlier this year she had a dizzy spell in her house and fell.  She sprained her ankle and bruised herself up badly.  The recovery was going to take a while.

We live 150 miles away.

What happened next?  Panic time. Mom was going to have limited mobility and a long recovery time.  We'd have to cook for her, help clean for her, take care of shopping and transportation needs - from 150 miles away.

 But then, to the rescue...

There were several sets of guardian angels in my mother in law's life, and yesterday we all converged on my mother in law's house for a BBQ we had promised as a thank you.


Two sets of nieces and nephews, and a single niece, sprung into action to help my mother in law out.  These weren't local people either.  They lived closer than we do, but they still had to drive a bit.  One of the duos sometimes came out more than once a week.  They all had experience with caregiving for their elderly parents (in all cases, since deceased).  They did many things, too many things to mention, to help her recovery and make her everyday life easier.  I learned a lot from the experience.  I know we are going to have many more adventures in our care giving journey.  I know this is only the beginning. 

All of these relatives, and you know who you are, thank you.  You will always have a special place in my heart.


One of the nieces, during this whole process, gave me almost nightly updates on Facebook.  We kept in touch with my mother in law, of course, and visited when we could, and other siblings helped out also.  But we both work, and anyone who has done long distance caregiving knows how difficult it can be.  I know it is only going to get worse.  We've been lucky so far.

In our case, the fact that my mother in law lives with her developmentally disabled son just added to the complications.  That's worth a blog post all by itself.

Thankfully, my mother in law is a lot better now. But time marches on and she is very frustrated at what the aging process has done to her.

Today, the weather cooperated.  My spouse (the family cook) grilled hamburgers, white hots (a type of bockwurst popular in our part of upstate NY), pork tenderloin spiedies (spiedies are another specialty food of our area), and grilled vegetables.  Everyone else brought a covered dish or a dessert.  Two people brought their I-Pads and owning one is very tantalizing.  One of the men brought a remote control helicopter, called a Parrot, which is controlled through an I-Pad.  If I'm up to it, I'll post some pictures of the adventures of the Parrot later this week.

One of the couples brought their daughter, who will graduate high school on June 15. What a smart, well poised cousin my husband has.  This is a young woman who is going to go places.  She pitched right in and did more than her share of the cleanup.

After dinner, my mother in law brought her wedding photo album out for some family memories.

There is a lot of sadness in watching my mother in law age.  She's always been a hard worker, and it is so hard for her to sit down and let other people do the work. She kept herself in shape when younger, but time takes its toll on everyone.  A stroke several years ago didn't help her, either.

She managed to exhaust herself because she kept insisting on helping us out.  Still, I know she enjoyed herself very much today, and that is all that really mattered.

And now....we can keep worrying.  Worrying about when the next fall will be.