ELDER MUSIC: Classical Predilections 7
A TGB READER STORY: The Stairs

Some Respect is Requested

Last Friday, I posted a story about how, even with pancreatic cancer metastasized to a lung and peritoneum, and COPD, my life is still rich but in different ways now to accommodate my health issues.

Wow – did we get reamed for that. By “we” I mean, in addition to me, the TGB readers who commented about how they find ways to enjoy their days despite what might limit them as they grow older.

What happened is that long-time commenter, Cassandra, dropped by. Kaboom!

She made certain we know how awful she thinks we all are because we didn't talk about how terrible life is caring full time for a husband who has Alzheimer's disease. Here is her comment begrudging the rest of us:

”So, you are all enjoying your old age. Absolutely nothing said by anyone here applies to aging dementia patients.

“My Alzheimer's husband has not been able to learn anything for the last six years, and loses more cognitive abilities every week. In addition he has a bad back, is in constant pain, takes pain medications that cause constipation and is gradually losing the ability to walk.

“I have to monitor him 24/7, including his bathroom activities and I can tell you my life is not enjoyable or upbeat.

“So why don't you all stop bragging about how upbeat your aging process is. I have to go now and try to help him walk to the bathroom for the sixth time in five hours and monitor the outcome. So pardon my attitude.”

It's not hard to understand how Cassandra can feel that way. I've been there, having some past experience caring for my mother although only for several months compared to Cassandra's years.

Nevertheless, I feel that our blog has been sullied.

It is a hard and fast rule here that no commenter may attack other commenters or me. Arguing points of view? Fine. Disagreeing with an opinion? No problem. Correcting an assertion? Sure. But do it with respect. Argue or disagree with the issue, not the person(s).

Respect is one of the top values that have kept this blog from falling into nastiness and chaos, as happens at too many websites, and as long as I am here, I will fight to maintain this blog so people are comfortable here.

There is no way to be certain but I think I know how Cassandra was feeling on Friday.

Even with my short tenure as a caregiver, I was sometimes so tired there was nothing to do but weep for a few minutes until my mother needed me again. 24/7 care is hard, exhausting, unrelenting work no matter how much you love the patient.

But even allowing that Friday may have been a particularly bad day for Cassandra, her attack was out of bounds. We don't do that at Time Goes By.

I made it clear in that post that all old people are not capable of taking care of daily needs but on that day, I intended to talk about how good life can be even with limitations. It was obvious that caregiving was not the subject.

Every now and then I post a story that allows all of us to complain for a day – we all need to do that sometimes. Friday, however, was about how, amid the physical difficulties age can rain down on us, there can still be great enjoyment from life, just in different ways.

One of the things I'm pretty good at is working aorund impediments. Another way of saying that is, I have little trouble accepting what is and then jumping ahead to working out how can I make the best of it or find something else to take the place of what's been snatched away.

Others here Friday were writing about similar things.

So no one was “bragging” on Friday about having an upbeat old age. We were just taking some time to talk about where and how we find joy at a time in life when it's not as simple for everyone as when we were young. And, maybe, to remind ourselves to do so.

The problem with nasty or combative comments is that they give new people who stop by permission to behave in that manner. One of the reasons this blog as been a safe place to enjoy a good conversation is that I'm militant about maintaining respect among us.

There is no doubt in my mind that Cassandra was having a really bad day on Friday and that she's not unfamiliar with such days. Even so, on this blog, everyone is required to keep a civil tongue. Respect is a requirement.



Comments

I fully agree with you. That is why I read you first thing every morning.
Thank you
M

The space you've created here, Ronni, is damn close to a warm, inviting refuge, filled with various attitudes and differences of opinion and viewpoint. One that feels welcoming and we olds who've chosen to stick around are thankful every morning that it's here.

And many of us probably have some serious shit that takes us to our knees every once in awhile. Eventually everyone will in a lifespan.

And then we open up this space to be. To breathe.

For me, that's "it," and I hope Cassandra can still experience that relief here or somewhere.

For a brief time, I was the primary care-giver for my mother. Sadly, I must admit my relief when she passed. Now, I am the one in need of some of that care. Living in an assisted living facility, I can say that most of the folks here are not happy-go-lucky seniors. But what amazes me is the courage with which many of our residents face a multitude of serious illnesses. They do it with dignity and stoicism and, without complaint.
We rarely get to choose the path our lives will take, but we sure can make the best of what we have.

I'm grateful I didn't read comments that day and I'm sorry it happened. I lost both my parents to Cancer. Caring for them was not joyful however we had so very many joyful moments and I have such wonderful memories and warm hugs from those times with them.

Mom said (and I hope that I NEVER forget!!!), "as you get older, don't be angry about what you can't do, be grateful for what you CAN do". Just 3 days before she died, she insisted on walking across her home with her walker. Wow! That has really stuck with me. She insisted on sitting at the table when I had meals even though she ate nothing. My first thoughts of her are NOT the daily weight loss, the loss of appetite, the inability to have a phone conversation because it just took too much energy, her friends disappearing except for 2 :-) love them! My 1st memories of that time are the laughter, the friendly visits, those life lessons aka "pearls".

Dad told lots of stories and went through photo albums with us kids. Cancer was harder on him as he had lung cancer and since breathing is necessary for talking, it was tough. He lost abilities faster and he was in more pain and most definitely more struggle-he never complained.

So to all of you caregivers, I salute you. I know you have bad days. I know there are days when you wish it was over. I know you have joyful moments and good days. Bless you each and every one :-)

Saw her post and thought Cassandra definitely needs caregiver relief. She needed to vent even if it was off topic. Yet I appreciate the tenor you demand on your blog as it is a safe place to visit and share.

How sad it is to be unhappy and resentful - there but for the grace of god (?) go I.

My mantra has been to ask myself "What's good about it...?" because usually, no matter how awful the current problem is, there seems to be something at that moment for which I can be grateful. It might be something as simple as a moment to gaze at the beautiful clouds this morning, or a memory of a happier time.

But, I have never been in Cassandra's situation. Yes, it must be awful. I do "get" it.

Yet, it is good that there is a place (comments to your blog) where one can vent. Sometimes it makes one feel better just to let off steam.

I wish you both a quiet, reflective moment. I wish you to recognize that others DO care.

Cassandra seems to be coming from a place of exhaustion and fear. I don’t think I see that as disrespectful. Far too many seniors are in the same place. I hope she can find some relief.

I try and look at the silver lining to the clouds in my life, and I saw that you were doing that. It does not mean that anyone else has to, sometimes it rains, and rains, and you can't see any silver linings. That doesn't diminish or negate either experience.

Don’t worry...your blog is still that safe and wonderful place we can all go to. I agree that she was just having a very bad day and I can only imagine how difficult that life would be. I don’t think she was necessarily being disrespectful, but perhaps bitter.

Someday, for all of us, our struggles will pass one way or another and if they pass while we are still alive or a new one comes along, we will all need to find some joy or whatever in living (either big or small) to finish our own lives out in peace.

Let's stop the stuff about who's life is the biggest struggle in old age.

We have a "crazy" in the White House and at 95, the pain I feel for my beloved country surpasses all the individual pain possible.

Let's not try to race to the finish line of pain!

Your response as keeper of the blog is correct and needed so I was very glad to see it--the world certainly needs respect.

The commenter's remarks could have been the start of a legitimate discussion/argument if she had left out the negative jabs probably the result of a bad day for her combined with her perception that her problems are bad enough without what she took as indirect criticism of her for not finding a way to pull up her own bootstraps as all the writers had done.

I think she had two very legitimate points which are appropriate to address (and weren't discussed in your response on the topic of respect--these are different points and worthy of a different thread).

1) The spirit of finding joy through daily life as circumstances change with age is dependent on (perhaps defined by) a sense of control--that's what all the stories in recent articles have been about. This is probably easier for singles , certainly possible for supportive couples, but maybe impossible to find even brief moments with sense of control for those with 24/7 demands.

2) None of the recent stories address what this would all mean for someone with dementia. Control is a function of the mind--what happens when you have lost (beyond what we all now know is a normal level of loss with age!) or are losing your mental abilities? How does one deal with watching your partner go through this disintegration?

Ronni - I am not sure now about your rules for mentioning books so I will understand if you need to delete my comment here. But the difficult circumstance Cassandra is in prompted me to suggest two options which might be of help to others caring for someone with Alzheimer's. I was given the great gift of having a program near me that helped take care of my father after he was diagnosed with Alzheimer's. The program is called Program of All-Inclusive Care for the Elderly - or PACE. There are fewer than 200 of these in the US but if anyone is near one I can say from my own experience that having this to help care for my dad made life so much more do-able for my mother and me. Later, my mother, who was fine mentally but had multiple chronic conditions was cared for by that same program...

...as others here have said, my brother, sister and I found much joy in those last few years with my parents and I feel blessed for those years. But those times of joy and love were made possible by the help of the wonderful comprehensive PACE program that cared for all of my father's medical needs and most of his personal care and supervision needs even while he was able to stay home with my mom in their apartment.

When I read Cassandra's comment that day, my heart ached for her. I heard the bitterness, self-pity and resentment in her words, but I also heard the exhaustion, grief and impotence, especially in a situation in which there simply is no hope. I've been there myself when caring for my mother-in-law for two years during her extreme dementia, but caring for a spouse, who may be much larger than you and, when faced with the increasing physical incapacitation, can become a threat to your physical.

Caring, even for someone you love, can't always be done with grace. There were times when I had to lock myself in a room away from my tiny mother-in-law, who at less than 5' and about 90 lbs., was much smaller than me. Those who haven't lived through this yet may have no idea how much strength a demented person can still have, nor how mean they can be at times. It's a bad combination. The fact that Cassandra has been providing her husband's care for some time, and, hopefully, finding some solace and escape (as I did when I first came across Time Goes By) and yet hasn't, that I can recall, slipped into that unfiltered speak before now, is a testament to her strength. I have to think that it had been a long and demanding day, perhaps several of them, and her resilience had been ground down. I think we can all relate to being on our last nerve at some point and losing the control of our emotions and voice that we might otherwise maintain.

All care-giving is not the same, and I hope Cassandra gets some outside help if she hasn't already, because life without it is only going to become a greater challenge each day, and I do not want to think about Cassandra and her husband becoming one of the statistics that we increasingly hear about among the Alzheimer's population.

Having cared for a husband with dementia for 9 years, I don't think Cassandra's post was as much disrespect as a howl of helpless pain. Let's not add to her pain.

The reason nobody discusses politics (banned from the workplace, the military in the 90's)
is a viewpoint will not receive "respect" from both sides of the argument. Too many consider an opinion their opening to denigrade the speaker vs. accepting the statement per se.
You made a statement, Ronni, that may be true for many of us. Certainly true for me, although at times I wish I was 25 again. This is certainly not the column for 40 lashes to be
dispensed. Thank you for an open forum for all of us. B

The TGB house rules make sense and I think it's good to remind readers of them once in a while

I cannot imagine what Cassandra's life is like - day in, day out. I've been a carer (caregiver as you say in US) to both my parents and to two friends who died of aids; it was a roller coaster of hard work, fun (in a funny sort of way) love and hell. Thankfully, I was well supported by friends and family - and was able to vent my sadness, frustrations and anger.

It's not difficult to imagine Cassandra was at the end of her tether and TGB was the only opportunity she could vent - despite being a regular reader who knows the rules. But, heck, every rule needs a little give and take, occasionally, surely?

I did not see Cassandra's comment the other day, but I,too, appreciate the "meme-free" voices in your blog, Ronni. I have been wondering for quite a while about the lack of conversations about Alzheimer's. In my midwest city, assisted living facilities are popping up like elementary schools did in the 60s.

"The long goodbye" faced by friends and relatives to victims of this dreaded disease is horror-filled. In my senior community, the men are mostly missing as they tend to expire at an earlier age. Most men who have wives with Alzheimer's......they usually visit their wife (victims) at nursing homes or other facilities and hope their money doesn't run out before their lives do.

Cassandra deserves the compassion of an understanding community.

Caregiving does require 24/7 surveillance. It is often agonizing to get up at 3am in the early hours and play bridge, run the patient to the hospital, or take them to Sunday morning church services in their nightgown. All of this and juggle a 'normal' household.

I have been there and done that . . .

I empathize with that desperate cry for help. This woman also needs moral support. Perhaps an additional caregiver to take up those extremely frustrating moments.

Placing her loved one in an assisted living facility would be the logical choice where more than adequate care can be provided by trained full-time staff. Interestingly, on 60 Minutes last night, there was a 20-minute show on just this issue. BTW: Monthly costs? An often prohibitive $13,000.

Empathy is required here - she is not lost - she is literally crying out in anger for answers and help.

I think you put your finger on it ... Cassandra was having a really bad day

Those who preceded me have, as always, expressed my sentiments better than I could have. With two additions. Although I don't believe in comparative suffering, I do know - from professional and personal experience - that caring for a spouse with dementia over a period of years has to be among the hardest. Also that while "bragging" might not have been the best word, I do understand the feeling behind it. When I read responses about having a good old age despite disabilities that mention "my husband" or "my wife" it is all I can do to stifle my tears and, yes, my rage. When you are mourning a loss (as those of us who lost a beloved partner continue to do for the rest of Our lives) the knife cuts deep. So I'm sure Cassandra meant no disrespect to anyone. And hope that she uses all resources available to her - starting with AARP, the Alzheimer's Association and th many fine books (including the classic "The 36 Hour Day " ) Family service agencies and the social work departments of most hospitals are good sources of referral for counseling and spousal support groups.

Poor Cassandra and her scream of savage misery. What she said didn't make me feel this blog was an unsafe space, but I fully understand your reaction, Ronni. I'm astonished at how horrible people can be to each other online and you need to nip that in the bud.

Cassandra, I don't know the details of your situation, but you evidently reached the end of your rope a long time ago. My heart goes out to you. Please contact your local agency on aging, the Alzheimer's group near you, family, friends, and begin by getting yourself a respite for at least several days. Then arrange regular relief.

I know it's hard to summon the energy to do that, but otherwise the situation will kill you. Been there, done that. Wish I was near to help you.

An entire post and a ton of comments, all making assumptions about one person based on one comment. Really? Is that a demonstration of respect?

Here's the deal for me. Say you need to vent, then, go to it! But stay in your own circle, don't try to beat up on me for being there, willing to listen. Cassandra could have had a fine vent, I would have been totally sympathetic, but no, I don't respect not respecting a whole group of people who you feel are better off than you are. Or worse off, or for any reason. I know there's lots to respect about Cassandra, but not this one, singular action. She's better than this.

Sometimes one needs to get their nasties out, I didn't read her comment, and have many thoughts about Dementia as I watched many at an Assisted Living Facility with it, and yes, sounds like she needed a break. I did classes with some of the residents, and feel that we all need Advanced Directives so we can tell others what we want, and I'd say, offer me up for science sake, and then hopefully like you Ronni, let me go, it's a terrible disease, and we need to Have The Talk, and write it down. Read up Being Mortal, A Bittersweet Season, the december project, lots of thoughts about palliative care, and end of life. Bless all of you, m

I didn't see the post to which you refer. I did refrain on Friday from posting that reading how positive all were was disheartening when one isn't...when pain is so severe that tho' I do work, out of necessity and love, it can be very tough. And to read that I must be a kvetch to not love aging in pain .. well, I understand. I wouldn't have criticized any whose lives are richer .. I think mine is in some ways.. I learn daily in my field and contribute to others' learning. Yet, to not be ok should be allowed.

How then do we express not ok w/o seeming to be saying "yeah but" v. "yes and" to those who feel so good?

I agree with you, Ronni, although I have some idea of where Cassandra was coming from but that doesn’t give her the right to trash those of us who love life and can manage to see the joy in almost every aspect of it.
maintaining a good attitude is the best way to deal with any situation. Cassandra should watch it, lest she find herself in a worse situation. Karma is a bitch.

I agree with Mary, Joan, Susan R. and others. Quite simply, TGB may not be an appropriate venue for "not O.K.". Personally, I don't think Cassandra intended any disrespect at all, but society as a whole doesn't seem to have much empathy for "not O.K." It's probably wise to keep that in mind, which I will try to do.

I didn't see Cassandra's comment either. And I think Ronnie does a wonderful job with this blog and can understand her needing to keep disrespect (such as Cassandra's referring to the "bragging" of some commenters) down to a dull roar. I will say, though, that having been almost the sole caregiver, over a 10-year period, of 5 elderly parents and now beginning to suspect that my husband may be starting Alzheimers and living in an area where there is no respite care whatsoever for caregivers--I just talked to a caregiver last week who had looked & called *everywhere* for help with no luck--I not only understand Cassandra's pain and anger, I'm afraid, since my husband and I have no kids (namely daughters or daughters-in-law since they're usually the ones that get stuck with caregiving, almost never sons or brothers) that I'll be spending the last part of our years going through what she's going through. You know, that old adage about you can tell how civilized a country is by how well it takes care of its aged and other needy is the truth.

I felt sadness and (I hope) understanding when I read Cassandra's comment post. Not for a moment did I feel she should be called out personally and scolded for it.

As I noted above, unfortunately, it's "not O.K." to be "not O.K." in our society. Pollyanna wins this one, BTW, I SO agree with Emiel's comment about the current occupant of the White House!

I read Cassandra’s comment and heard her desperation. Caring 24/7 for a partner with Alzheimer’s is one of the hardest tasks there is. It is horrible already if it affects someone in your family but if it is your spouse, no one can imagine the pain – it changes you, you lose your joy, your health and your soul.

When I read her comment I thought how I would like to talk to her or email her because I understood – my husband had Alzheimer’s for 10 years and he died last fall – I never could find anyone willing to help, with pay or otherwise – friends disappear, family does not have the time or is far away, it is a very isolating situation, you feel like no one in the world cares for you. There are online boards for partners of Alzheimer’s patients where you can scream, cry and they understand. I realize that this is not the right place. If there is any way you can give Cassandra my email, please do. I know what she is going through; she needs our understanding and love.

I went to a Caregiver Seminar which was adamant that the caregiver take time for themselves and self-care, otherwise there are studies that shows that the caregiver dies before the patient. It is not selfish but extremely important to maintain the caregiver's needs as well as the patient.

Ronni, I understand the various points of view regarding Cassandra’s tirade. That being said, TGB is your blog, one from which we have all received immeasurable benefit. Given all the trying challenges you are currently handling, you are the only one who gets to decide without justifying or explanation whether someone else’s venting or advice or negativism are what this blog can or should withstand. Personally, what the whole situation brought up for me is how scared I am of ever being put into a position like Cassandra’s of having to be a full-time, years-long caregiver. I am 75 years old and my mettle as a caregiver has thankfully never been tested, something for which I am grateful. Both of my parents were cared for by my sister in their last months (mercifully not years) of decline, because I was overseas for decades working with the Foreign Service.
The other topic that jumped out at me is the urgency of everyone needing to have directives about their death. I can well imagine the resentment and, yes, hatred one would feel towards the so-called “loved one” who put their nearest and dearest into such a horribly straitened situation.

Thanks Ronnie for your excellent editing of this group. That said, I can understand Cassandra's feelings. Her energy might be better spent advocating to get better services and supports from Medicare. A home care worker, well paid could be a benefit from Medicare.
If Cassandra had a helper come in every day, my guess is she would feel lots better and be able to process the feelings she has about loosing a person she loves. Complaining to us will not do anything but drag our spirits down. Not helpful. Thanks for the edit, Ronnie.
Blessings to you and may love pour through your life. You are an inspiration.
Love to ya. Ellen

I weep for Cassandra. As it was said in Wikipedia of her namesake, "Cassandra became a figure of epic tradition and of tragedy."

Our poor Cassandra is indeed a tragic figure, but like some of the other writers today, I wonder if she has reached out to anyone or any organization to give her relief and help! Unanswered questions: Is she in an area too far from this kind of help; is she so devoted to her father that she feels obligated to do all this herself? We can't judge nor advise her if we don't know more about her situation.

All we can really do is sympathize, empathize, and otherwise wish her well in her travails.

I think Cassandra is living a nightmare. I don't think she needs any blame or anyone calling her out. What I would like to do is give her a break...she's got too much on her shoulders. If anyone is close to her please help her.

I'm a bit startled that nobody seems to know this is not a one-time-enraged comment by Cassandra.   She has commented in a similar vein many times before on this blog, although perhaps not quite so directly as she did in her latest comment.  Nevertheless it's always been very clear to me when I read her comments that she is angry, despairing and pretty much at the end of her rope and yet there is apparently no end in sight to what she is dealing with.

My understanding from her previous comments is that she's the sole caregiver for her husband, whose Alzheimer's has been worsening for a number of years.  And that in addition to the terrible toll that is taking on her, she is also terrified of what it might lead to financially down the road. (I apologize in advance if I have that wrong, but that has been my take-away from what she's said). 

Though horrified and deeply moved by what she's dealing with, I have only rarely responded, because as a Canadian, I'm not familiar with what resources might be available to her.  I'm glad to read others now offering some suggestions in that regard.

I don't know Cassandra personally, but as with everyone else who comments here, her experience and words inform and touch me. I can't hear the word "Alzheimer's" without thinking of her.

My point right now though is that  Cassandra was not just having a really bad day.
 Cassandra is clearly having a really rough life, at least at the moment.  And her comments on that have been consistent

PS  One more point.   As I think we all know, one of the many reasons this blog works so well is that Ronni runs a tight ship.  If she didn't, it would have disintegrated into chaos long ago. And she's absolutely right, this would not be a safe space for all of us to comment.  I'm deeply grateful for that safe space she creates for all of us, with our divergent views of life and death and the meaning or lack of meaning we see in each of them. 

But it struck me today while reading the comments that there seems to be a bit of confusion about these rules. I've never had any sense that we were all supposed to be cheery and upbeat and uncomplaining; that negative views are frowned on; that anger, disillusionment, despair or plain old rage are disallowed. I think  I've heard all those things expressed here, with nary a slap on the wrist from Ronni.  

What's not allowed, regardless of how enraged we might be feeling, is rudeness and/or attacking others.  I taught that same principle to my kids when they were little. And it works.  By all means be honest and express what you really feel.  But don't blame or attack others for what you feel, that's a whole different game.  

I thought Salinda expressed that principle really well in her comment:

 "Here's the deal for me. Say you need to vent, then, go to it! But stay in your own circle, don't try to beat up on me for being there, willing to listen."

Exactly.  That way everyone benefits and learns from one another and nobody gets hurt.   

Cassandra needs help, that much is clear. There are many resources available to her and she needs to reach out to them. I understand her need to vent, but perhaps this is not the venue to do so. Hopefully she also has found a blog of people who are caregivers, and who can offer their support. People who are dealing the "side effects" of aging and/or disease, and are mustering the strength to find way to have a fulfilling life with some degree of happiness, are demonstrating bravery and what I like to think of as the human spirit, deserve respect and support. Not rudeness.

I appreciate reading others comments here describing their feelings at any point in time and actions they take to cope. I view life as requiring my adaptation to a variety of situations I’ve encountered, so find much can be gleaned from others who write about having both similar and different life experiences from my own.
I’ve been a caregiver, worked with both patients with varying needs and their families/caregivers and now am adapting to aging’s gradual changes that will likely result in my increasing need for receiving care.

I think it’s helpful that you remind us what we write here is not intended to be interpreted as saying we think we’re coping “better” than another or that any one person is “lesser than” if we become judgmental comparing ourselves. We don’t want to attack one another as that is not the point of what makes this blog special in today’s world. Your guiding hand and judgement helps preserve this desired community atmosphere. Thank you.

I found your blog today and will sign on for more.

Hugs, Cassandra, hugs and love. I hope you dont worry about being less than perfect in your comment. You are human, doing an unimaginable hard job. I bow to Thee. Love from Amsterdam

Katie summed up my feelings, probably better than I could have expressed them. I do want to comment, though, about my gratitude for how well you manage this blog, Ronni. I would love to wander around the Internet, reading tons of different perspectives from many different blogs/sites. But I don't, because the comments are so mean spirited that it destroys any pleasure I would have gotten. I have always been impressed that your blog has such an active group commenting, and always respectfully. Thank you for keeping a tight lid on it.

I think there are multiple points to Ronni's statement today:

1. That post was intended to be about how each are enjoying their lives in spite of the conditions of aging. That is the intended Tenor ( definition, the course of thought or meaning that runs through something written or spoken) of the discussion and shouldn't comments be along the lines of the post for the day?

2. It is not acceptable to order others to not speak to their story . IE "quit bragging". That is not respectful of others.

3. Ronni has never said aging and illness are easy. She has certainly had more than her share of illness and bad days. That day she raised the bar to 'the good life' in spite of her situation. A celebration of what is, instead of what was.

Exactly what Adie said.
No offense taken, Cassandra. My heart goes out to you.

Time Goes By and none of us know what tomorrow will bring. For some, it may be incredible hardship and sorrow. I think that is why it is important to celebrate the moments of happiness, even if they are fleeting. Sometimes I feel guilty being happy. And I am uncomfortable or embarrassed sharing my pain. My hope is that somehow we can provide a safe place to be who we are at the moment, without shaming others who are in a different place or on a different path. It is one of the reasons I love this blog. I think it does a wonderful job balancing hope and despair with humor and compassion. It is a rare find and I am grateful for it.

Reading this a day late. I think of all the comments Elle's says it in a nutshell. And I thank Ronni for maintaining such an excellent blog without negative, rude comments. As many have said, the blog was with regard to how we are enjoying life despite the problems we may be experiencing aging. And as mentioned by a good number of readers, that is not to say we haven't also had experiences that have been very exhausting emotionally and physically in caring for others. Or even presently experiencing very, very difficult times adjusting to our own problems. Thank you again, Ronni, for managing your blog so well - particularly when you are going through your own experience with pancreatic cancer. I am so grateful that I can still read your thoughts and those of your readers almost daily.

Thank you, Ronni, for calling out rudeness and discourtesy. Your blog post was not the appropriate place for such hostility. There are boards where caregivers can meet and vent.

Great comments from all. One thing keeps jumping out at me though: "Cassandra needs to look into what resources could help her." As I've stated above referring to my conversation with a local caregiver who had tried everything & gotten no help, she may be in an area like mine where there simply are no resources.Period. Full stop. No resources or respite other than other family members. "Oh, you don't have any family members or any that are willing to help? Sorry about that; thoughts & prayers to you." Oh, there's an Area Agency on Aging here but try calling them about anything and you always get a "Sorry, we can't offer that, don't have the staff/money, etc." So if you live too far from civilization (i.e. a large enough city), you're screwed. Isn't health care in this country (U.S.) grand?

After reading most comments, I'm so impressed with the wisdom & compassion shared here. Cassandra desperately needs help and I hope she finds it soon! I will soon be caring for my husband who suffered a massive stroke in May. One thing I know for sure: I'll need all the HELP! I can get. My husband is 56 years old; I'm 69. I always thought he would be caring for me. HA HA! Life is always unpredictable.

I hope you will write a blog Marilyn, so we can find you and reach out.
Courage
Adie

Cassandra's comments were RUDE.
What she has done is the equivalent of spitting / s.itting in the punchbowl of someone who invited her.
She should be ashamed!

No Cassandra's comments were not rude. She is suffering from extreme stress, like PTSD level, 6 years of overwhelming stress and depression. Do you know why the Anthony Bourdains of this world "off themselves," because if they say how they feel, nobody wants to know and they scatter like the wind if they blow up. And WE should be ashamed as nobody has given her any concrete suggestions.

I think WE have bullied her off this blog. All we did was blame the victim and give her prayers, "for better or for worse," "go find a caregiver blog" as suggestions. Ronni, is getting a lot of support including financial, because she has a "worthy" illness, neurodegenerative patients like Alzheimer's are tossed to the wind to fend for themselves. That is cruel and unfair.

Cassandra, you've done enough. Go to a lawyer immediately, that specializes in elders, and do what you need to do to protect your assets so that you are not impoverished. You may be able to do a legal separation and keep more than half. Your husband needs to go on Medicaid and get a placement. You need to get on with your life. You can visit him every day but you won't sacrifice your life for his comfort. He would not want to see you die an early death or live in poverty because he was not proactive. I live in a country where I can choose medical aid in dying in the early stages of Alzheimer's and that's exactly what I will do. I will not impoverish my husband, expect him to be my caregiver or dump on low-status women who work in these "homes." But then I'm a super planner and not a "my thoughts are with you while I do nothing for you" kind of woman.

Hi Vera-D...
Just a few random thoughts in response to your comment:

1.  Perhaps, as a self-described "super planner" and not a "my thoughts are with you while I do nothing for you kind of woman", you could consider starting your own blog, for which you could create your own rules.  Perhaps it could be centered on helping caregivers of Alzheimer's patients.  That could be useful and you seem to have some good ideas. 

2. There's a difference between *understandable* behavior and *allowable* behavior.   That's why we have social rules; so we can suss out what is permitted in any given context.  Ronni has made it crystal clear what is allowable on her blog and what isn't.   We all  know the rules here and most of us are grateful to have been invited into this space, where we can share our experiences and learn from each other.  It's a privilege, not a right.   We're lucky to be here.

3. Given this is a community of elders, there's probably not too many in this group who haven't been through some sort of heart-breaking hell, which they've somehow managed to live through, or are still living through.  Yet despite that or maybe because of it, most people here try their best to be helpful and empathetic to the troubles of others.  I must have read the comments differently than you, because I recall quite a number of deeply sympathetic attempts to be helpful to Cassandra. Regardless, it's probably not all that useful to create a hierarchy of "my suffering is so much more profound than yours", or "you just don't understand my suffering and you think yours is all that matters".  

4. Regarding PTSD, your comment reminded me of something my son said the other day.  I mentioned to him that our own family's gut-wrenching two year journey had perhaps left all of us suffering from PTSD.  To which he replied "Yes. Except there's no "P".  Because it's not over".  Oh yeah, good point. It isn't. 
That might apply to a lot of us. So let's be gentle.

Wow. I completely agree with the compassionate comment posted by: Jean K Gogolin on here. She clearly has empathy for someone suffering and said "...I don't think Cassandra's post was as much disrespect as a howl of helpless pain. Let's not add to her pain."

It's all to easy to hold someone up as an outsider and it almost feels like ridicule to throw her rant out to the public for others to agree on her 'punishment' for not playing by the rules. I don't doubt her sincerity. Whenever I see someone who doesn't give in to crowd-think agreement but speaks truth, it is remarkable.

So please show those who don't agree with you empathy and compassion. I bet there are some who also agree with Jean K Gogolin's comment but are not as brave as her to speak up for those suffering so much they can't abide by etiquette every time.

Please show compassion if not empathy and ...Let's not add to her pain.

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