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.

Not Forgetting to Remember

It was still another message on the phone, asking my spouse and me to do something related to the care my spouse and I help to provide for both an elderly and a disabled relative, and my mind wanted to go "pop".  So, I forced myself to step back.

Sometimes, there are just not enough hours in the day for most of us.  But then, there are also flashes of seeing another side of life, a side where we who give care depend on the kindness or effort of others, and sometimes we just don't pay them enough thanks.

Sometimes, we are so harried and forgetful, and we forget to see past ourselves, our own problems, and realize what we have been granted - friendship, support, and kindness.

Today, I want to say "thank you" to some of the people in our lives we could not have made it through the past months without:

The cousin who, seeing how we were struggling with a last minute deadline, switched with someone else at his job, and came by at 7:30 the next morning, with his patient and strong son in tow, to help us out.  We never could have met a deadline without this act of kindness.

My mother in law's neighbor, who has been more of a help than we can ever thank her.

My son.  Your grandmother appreciates everything you did.

The co-workers who gave me support, and listened to a rant or two (or three, or....I'm not saying how many.)

A couple of in laws and their spouses or significant others, and other relatives, for what they did to help us.  It's too long a list to publish.

My spouse, who puts up with my impatient and emotional nature.

A geriatric care manager, who gave us more support than she will ever know.


Staff of a certain ARC chapter, for their years of service to my brother in law "B", who has autism.

Various medical people.  The nurses who do the work and tend to be forgotten, especially.

I know I have missed people in this list.  If I missed you,know that I still appreciated you.

And finally, you, my readers, during this time of me not commenting on their comments, not reading their blogs, being somewhat self-centered at times.  They forgive me for rerunning posts of the past from time to time (to time).  This situation will probably exist for at a while longer, and I appreciate your patience.

Have you ever depended on the support of others?

Where Do You Want to Be In Ten Years?

Retirement.

Is it the end of the road?

Years ago, I used to play The Game of Life with my young son.  This board game has a fascinating history - it was created by Milton Bradley (yes, there was a real Milton Bradley) in 1860.

 In the Game of Life version we played, after high school, you could choose either to go to college or start work immediately.  You chose a profession, got married, had children, did various things, and ended up in one of two retirement villages, depending on how much money you had.

And then, I suppose, you drove into the sunset.  As I recall, that's where the game ended.  You added up your money and other assets and the player who had the most won.

Won.  As if life was a competition.  For some people, of course, it is.  I'm not one of them.
 
For many people reading this blog, retirement may be years away.   But today's NaBloPoMo's prompt is "What do you think you will be doing 10 years from now?"  Retirement came immediately to mind.  My spouse and I are both in our early 60's. We hope we can be retired by the time we are in our early 70's.

Yesterday, I asked my spouse where he would like to be in 10 years, and he responded "on this planet".

My spouse is a man of few words.

As for me, I wonder about retirement, because I know several people around my age, and even younger, who are retired.  Some retired voluntarily.  At least three of them retired to take care of elderly parents and stayed retired when the parents left the planet.  Several retired when their employers, long time employers decided they were not needed anymore.

Some had no choice about what they were going to do once retired (the caregivers).  Others had no time to think of it before it happened.  But I also know several people who retired, with high expectations, and found themselves working again (generally not for the same employers they retired from) within a matter of months.

Guess that sunset wasn't too attractive.  One man was plain bored.  Several discovered they missed income coming in.

So I wonder:  if I want to be retired in 10 years, what for me, makes a successful retirement?

Astilbe, My Back Yard, late June 2014

I would need to do something with purpose, I know that.
Retirement has to be more than growing flowers.

Community Garden, Otsiningo Park, early June 2014

My spouse wants to garden, but the growing season here in upstate New York is barely six months long.  There is an interest he's passionate about, and I suspect he will engage in that. (And no, it's not golf.)

Motel, Mt. Pleasant, South Carolina

After that, what?  Travel?  We don't have enough money for non stop travel.  But we hope to have the health, and physical ability, to travel.

After working for so much of our lives, so much of our identities, and our interactions with others, is work place related.  So we must make sure these needs are taken care of.  Retirement planning is a lot more than making sure you have enough money.

So, the short answer: doing things we love to do.  Maybe even, still blogging, if blogging still exists.

Where do you want to be in 10 years?

Sustainable Saturday - To Those Who Hate

Who cares for the members of our society: the elderly, the frailest, or those who can not care for themselves due to physical or mental disability?

It's a job too big for one person.  That is where society is supposed to step in - the combined power of us all.  But too many times, it doesn't work.

Sustainable life isn't all about farmers markets, although I write about them a lot.

Depending on ourselves, or on family, or friends, is a nice philosophy until you have to put it into action. A person who embarks on caregiving without support will, sooner or later, be a person burning out.

If there is anyone in the world right now I would want to have write a guest post for my blog, it would be a woman who had started a blog about her particular situation.

The author was a young woman whose parents are dead, and so the responsibility for caring for her older sister rests on her.  Her sister had severe seizures as a young child, which caused major damage to her brain.  The sister, developmentally, is about the age of three.  She has other issues, too, as a result of this disability.

When the young woman sought respite and housing help from the State she lives in...well, it became an absolute nightmare.  She's not looking for a handout.  She is looking for some respite.  She has taken responsibility for her sister, as have others of us who have people with disabilities in our lives.

It's no surprise to me, and no surprise to anyone who is a sib or a sib-in-law of someone who is physically or developmentally disabled, that she must wade through incredible bureaucracy with rules that make absolutely no sense.  She must deal with agencies who have no idea of the needs of the people and family they are "serving". 

Just think of all the people without loving families who are adrift in that system.

But that isn't what I am blogging about today.  Rather, what I am blogging about is what happened to that young woman's blog.

She had many comments on her first post - which is going to be her last post, because she had to take the blog down.  Let's just say some of the comments were not friendly.

This was actually one of my concerns when I decided to spend part of the month blogging about my brother in law, who has a developmental disability called autism.

Yes, there are those who hate out there, and they just love to deposit their droppings of hate anywhere it is convenient.  They hide in the anonymity of the Internet.  Or, it could be that her blog was visited by people who hate those with disabilities.  To them I say:  being disabled is one minority group that anyone can enter into at any moment.  All it takes is, oh, a car accident.  Or a stroke.  Or cancer.  Or the bite of a tick.  Or being bitten by the wrong mosquito.  Or an injury that gets infected by the wrong bacteria.  And then they will be looking at life from the other side.

What you give, you get.  Life is an echo.

Karma can be a bitch.

I hope that young woman continues to write, somewhere, somehow.  She has a wonderful voice, and it deserves to be heard.

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.

A Future in Fiction?

Last year, I wrote a fictional memoir.  It was a "what if?" piece.  The fictional "me" writing the memoir had not made a career change I made in my mid-40's.  Her mother was still alive (my mother died when I was 12).  The fictional me was not on vacation in Maine when a flood hit her neighborhood in September of 2011, and went through the flood instead of experiencing it from hours away, as I did.  It was a healing process.  It helped me a lot.  It served its purpose, and I am increasingly thinking that I should dust it off and start the editing process.

After trying to write my "real" memoir,  I find myself thinking about that work in progress more and more.  One of the characters, my fictional daughter (in real life I have a son), has been pleading with me, in my mind, to let her out and let her live.  How can I not resist?

I had been afraid of fiction, but in a way, fiction will now seem liberating.  I don't have to worry about fact verification - although I have to worry about all those aspects of fiction writing that I've never learned about, and now will have to.  Nor do I have to worry about writing about real, still living people, who might not like what I have to say.

So, then I got to thinking.  I hadn't inserted a fictional character with autism into that fictional memoir, but perhaps I should.

Why?

I am a long distance caregiver to two people.  One of them is my elderly mother in law.  Nothing unusual, there.   I am walking a path that millions of people have walked.  Nothing unusual there.

But no, there is something out of the ordinary. My mother in law lives with one of her sons. She has cared for this son every moment of his life.  He is developmentally disabled with a condition called autism. Mixed in with my mother in law's needs are those of my brother in law.  He will never be able to live independently.

What will happen to him when my mother in law passes on?  I've blogged about this several times over the years, and will be blogging about it again, soon.

I obviously know about the subject, and care.  So why not have the "fictional" me also experience this challenge, and perhaps I could set that part in a future that hasn't arrived yet in real life.

I just might do it. (I promise, no videos like the one in yesterday's blog post.) 

So...dear fictional daughter, hang on.  I might just be reopening that manuscript one day soon.

Gulp.

"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.

The Nightmare

Night before last, I had a nightmare about my mother in law.

No, my mother in law is not a nightmare.  Not at all. But I've been having various nightmares in the last 6 months or so, after years of not having them at all.

I have a lot on my mind.

I believe I blogged about my mother in law, who is in her 80's, and the fact that she has fallen several times in the past few years.  She also suffered a small stroke a little over 3 years ago.  She fell last in January, and sprained her ankle, after having a dizzy spell in the bathroom.  Fortunately one of her children was in the house, and she was able to get assistance after he heard her calls.  (she had one of the medical alarm pendants, but was not wearing it.)

As far as I know, she hasn't driven since the fall because of swelling, pain, and mobility issues, combined with the condition of roads where she lives (heavier than normal snowfall, huge piles of snow blocking visibility, roads narrowed more than usual).  She's been without a car for a couple of weeks, but is supposed to be leasing a new car later this week.  Anyway, to the dream....

She was visiting up here.  We were at a local park, a park where I've spent lots of time over the years.  In the dream, we were in her car, and she wanted to show us that she could still drive.  I was in the back seat.  She started the car and almost immediately was going way too fast - before she went too far she lost control and we were off the road and on the grass, going quickly to - where?  I was terrified we were going to hit either a tree or a picnic table. (in real life, those would have been hazards, but we also could have ended up in the Chenango River.)  But after a few anxious seconds she was able to stop the car.  We didn't hit anything or anyone.

At that point I woke up, heart pounding.

I don't think I need a dream interpreter to figure out what caused this nightmare, and what I am worrying about.

We'll just have to see.  Me and so many other children and in laws in my shoes.

Family Visit

My mother in law, sister in law and brother in law (the 50ish year old man who has autism and lives with my mother in law) are going to be visiting some time in August.

We have relatives with a lake home, just a small modest cottage, and they want to have all three of them over for a couple of nights.  I hope that the facilities they have will work OK for her, given her mobility problems.

There is a small "beach" in back of their "camp" but as I recall from the one time we've been there (maybe 4 years ago?) the ground was not very even. I'm not sure she would be able to get into water, a boat, etc.   She'll need to bring the raised toilet seat she uses.   So I hope she can stay otherwise happy.  I'm curious to see how they've fixed up the place in the 4 or so years since we have visited.  And, I am very curious to see her once again (we saw this a little bit at the motel we stayed at a couple of weeks ago) in something not her "native environment".  Her spirit is still strong but her body is less and less able to deal with adversary.  I fear for if she falls again.  I pray there is no accident during her visit.  So my husband is talking to her now, trying to get a feel for what she thinks about going to this cottage and what she may need.

I'm glad she is getting out of the house, overall.  I suspect that although she says she does mall walking (at the slow pace she can walk) that she is really spending a lot of weekday time in front of the TV.  Can't prove it.  On weekends, she has a lot of family events (birthday parties, that kind of thing) but we can see that she is starting to have some short term memory problems.  For example, she confused coming up here with a birthday party and was about 3 weeks off when she gave us the date of the trip up here.  And, she got my son calling her confused with one of her nieces.  Stuff like that.  Hasn't missed any appointments yet according to my sister in law (geographically the closest of the 4 children she raised to her) but that may be a matter of time.  More mental stimulation can't be bad.

I hope I remember all of this when I'm in my 80's.  (maybe Blogger will still be around, and I can reread all of my old posts.)

And also.....

There may be a long distance trip in her future too.  Earlier this year she spent about 10 days visiting relatives in Florida. (she flew down with other family members.)  They all treated her like a queen.  The brother in law stayed with the same family members who have the lake cottage, and both we and they spent "quality time" with him.  And she spent quality time without him.

Well, at the wedding we went to (see the "Cheesequake" post") the Florida relatives she stayed with came up here.  They invited her back for next year.  She didn't seem 100% ready to go.  I hope we have time to discuss this when she is up here.  I want her to be able to go down there with peace of mind.

Her world is getting smaller and smaller and I want to keep my arms wedged in that opening that is closing long enough that she can get out some more.  I'm sure all of us do.  It's such a balance to balance her needs with her desire to stay independent.

More later.

Tired Sunday

Today: transplanting, planting, repotting house plants.  Spouse doing all the "heavy lifting", thank heavens I have him.  I never could have done it with out him.


I still have a couple of bee balm plants to put out.  And some impatiens I got from Burpees.  Very high quality mail order plants, by the way.

Tomorrow, spouse will take tomato and pepper plants to our community garden-just in time for temperatures to start hitting the 90's.

Summer has come (probably).

As for me: I have to investigate one of those "benches" I used to see elderly people gardening with.  I think I need something like that between my back and my knee.  Both of which, incidentally, are not thanking me this evening.

Meantime, I never did do any of the organizational work I wanted to do for the caretaking log, etc. for my mother in law.

I looked up back when I did some gathering of information and - I am so embarrased to see when the last time I updated things was, I won't even mention it.  Well, I know some of the information is the same.

Some of it has changed a lot, some in a very interesting way.  So where have I been? 

At least this caretaking isn't an emergency situation-yet.  Another "thank heavens" for that.

Sigh. Not enough hours in the day.

A Caregiver's Valentine

Several people I know are caregivers for ailing spouses, parents, etc.

I would like to post this as a virtual valentine to everyone in my life in this position.

A friend in this position said it the best today (and I hope she forgives me for putting this online):

"I think it's a holiday to show unexpected love, or MORE love to those who already know you love them. Christmas got to be too much pressure and I couldn't keep up, so I send very few nowadays. But Valentine's Day seems to be so much less complicated, and there's no religious differences to consider either. "

So....let me take this opportunity to show love to those in my lives who need more.  And really, isn't that all of us?