Why do we try so hard?

I don't see any value in it. When it became clear that nothing would "fix" what was wrong with my mom (CHF, repeated pleural effusions, stroke and vascular dementia) we got her palliative care at her NH.

My mother was not hard to get along with and appreciated all that we did for her.

If you are not appreciated, why are you there?

I feel your pain.  We don't caretake because we are appreciated. There are a myriad of reasons why we are there. We do it because we made a commitment, because we feel guilty, because we would want it done for us, because it's the right thing to do, because of our proximity, i.e. we're the last living family member in town, or because of our culture. It's complicated. In an alcohol or drug addiction situation, this would be considered co-dependency, and we would be considered to be, or accused of being co-dependent (dependent on the needs of another, or manipulated by the needs of another with a pathological or mental illness.)  But in the case of our elders or spouses, it is considered an obligation or commitment, yet the caretaking results are the same as codependency; physical, mental and emotional exhaustion and depletion.  We might not be judged harshly for leaving an addict or alcoholic, but then might very well be judged harshly for admitting a loved one to a nursing home. It's very complicated. I have cared for elderly that are controlling and difficult to get along with, and others who were a pleasure to care for.  If they are historically difficult to live with, then caretaking is extremely complicated emotionally.  Their needs are being met, and our needs are falling by the wayside one at a time, until we don't even know who we are anymore.  Their lives are extended, often with little quality, and ours are very likely shortened, or what quality we had saved and hoped for is slowly being depleted. I have had cancer, and horrible treatments, but have been extremely healthy for 12 years now, and was very healthy before cancer, always ate properly and exercised, only to find myself caring for a demented husband with cancer, heart disease, hernias, replaced hip and knee, who never ate or exercised properly, smoked and drank. 

I have issues with a worldwide medical community that has given and continues to give so much time, money and research efforts to healing heart disease, cancer and other illnesses that we now have a growing population of people who are surviving multiple chronic illnesses only to be left with dementia for a decade or even two not even knowing who they are or who their family is.  I doubt anyone in their right mind would consider this to be "quality of life" or would choose to live out their last years this way. If I were diagnosed with dementia, I would not engage in treatment or would stop all treatments for other chronic illnesses.  The government funnels funds into research, maybe they can funnel more funds into helping healthy people survive caretaking!

Too existential a question for this
forum?

Perhaps. I expect there are almost as many answers to the questions of why and to the inherent value of being a caregiver- as there are people who come here.

We do it for ourselves as much as for them, because part of what gives life meaning is helping others.

I like how TerriLou said it. I agree that modern Medicine has kept us alive too long. Yes, the heart is still good but the brain is dying and the body giving out.

None of us want a parent to die but watching my Mom lose her mind and get frailer and frailer was awful. Yes, I think her decline was maybe faster once she was in an AL then a NH. But, I knew having her here longer was not going to bring back my Mom. She was well cared for and passed peacefully.

I often wonder the point myself exhausted. My husband and I both have decided that if we have no quality please do not make us have quantity. To be a burden on anyone because we fear dying is not in our cards. We know where we are going and are looking forward to getting there.

I believe that there are individuals that the lights are on but nobody is home and to prolong their lives takes resources that could be put to better use. Just my opinion.

I think it is just what we do. We keep people alive and care for them as long as they will live. Sometimes you begin to question why and wonder if they want to live or or are they just existing. Sometimes it's hard to know.

Bottom line...to me, we are living too long. And medicine just keeps on extending life past beyond what is normal. This has been eye opening for me. I feel so sorry for my dad have to just wait out his days hating how his life turned out. Read the book Being Mortal. Very insightful

My mom, God love Her, but she was just Irish Tough, and the ONLY medication she EVER received until she entered Hospice Care, was an antibiotic for an upper respiratory infection, perhaps 3 or4 times during her last 3 or so years, and Xanax to relieve her anxiety, which seemed hard wired in her and continued even after she’d lost the ability to communicate verbally.
So I, as her sole POA, didn’t “try so hard”, and we (her tenacious family) were all Blessed by a residential care center that DID appreciate US, just by the luck of the draw.
We chose her residence because we’d originally been forced to admit her there on a moment’s notice (thrown out of her hospital bed after she was “cured” a week after hip surgery), and found to our amazement that the rehab staff was able to get her to DO stuff. Then after living with me for 9 unsuccessful months, when she again had to be placed on literally a day’s notice, they had a bed for her and we took it.
I think I actually never expected, or looked, for “appreciation”. My mother was a tough cookie with a heart of gold, wracked by anxiety her whole life, and I was used to that when she was well, and continued to admire and cherish her foibles when she became dependent on me.
Although I too thought I’d die of exhaustion while we were living through the end of her life, I treasure the little joys that were hers through her family AND her care team.
She died at 95, and we still have contact with some of the staff members who were so good to her.

I couldn't agree more TerriLou.  
Medical science has made so many advances over the years but along with these advances now comes a whole new set of problems for seniors, the worst in my opinion, dementia.  Right now my family is experiencing 4 of our loved ones with this horrible disease.  My aunt (92) is not expected to live more than a few days now, my uncle (96) who we feel will shortly be following her, my father (94) and now my husband who is only 71 is also beginning this terrible journey with a vascular dementia diagnosis just recently.
Yes the 3 older family members have enjoyed a wonderful long life but I know had they been able to predict the end of life they are experiencing now they would rather have passed on years ago.
Many of us have been fortunate enough to secure our future financially but what good is that when our minds start to fail us?  What kind of living arrangements do we have to look forward to?  Our governments have not looked after our seniors in the past, present and I predict, the future.
I, for one, am very scared of what is to come.

I do not think there is a person doing this who has not asked this question. I think you are brave to ask. I take care of a pretty nasty narcissist because EVERY Time I see her happy, have one healthy moment - I know I am not her. That is why I do it.

I have been reading the questions/answers in this forum for a few months now and am so glad this existential topic was initiated. As a daughter with 5 siblings, my older sister and I talk about this issue often. So many people whose bodies are living but whose brains are not functioning. And not enough people (women or men) choosing to go into the nursing professions - a dire shortage of care staff even if you can afford it. Our mom passed away last year (dementia), our dad is in AL (vascular dementia, Afib, arthritis) and an aunt (81) who has no major health problems but has incontinence and dementia in Memory Care. And we thought it was hard watching our grandparents die from cancer......

I tell people my simpilistic philosophy about "the path of least regret " which i may repeat from time to time ...

we have choices ... both difficult/both "bad" ... so we need to look down the road and try to pick the one we hopefully will regret least in the future.

Sometimes we need to be caring and understanding and helpful and tho it may extend a life that doesnt seem like a good one at least we know we have made it better for another person.

So we do the best we can and come here where people understand and are supportive.

We don't do it for "appreciation." We do it out of KINDNESS and simply stated, it's the right thing to do. I am not referring to prolonging long.

I am blessed (per others, though I sometimes question it, in moments of deep frustration!) with two elder parents...mom almost 96 with dementia, and dad who everyone thinks is SO cute at 101, a role model for us all, active engaged, energetic...driving, golfing, mowing, volunteering, gardening....and making me exhausted. In the past week while I was recuperating from some significant oral surgery and admitted I did not feel good, we still went to pick out a new fridge HE wanted, and opted for stainless (i.e. FINGERPRINT SHOWING) steel and due to the deafness, the low limit credit card he wanted to us, I probably spent 4 hours on it all. The next night it was a crisis rash...hives. The evening spent running braless to the urgent care to get there before they closed at 9 (he told me it was spreading at 8:40 PM) after hearing their commercial while on hold earlier trying to get an appt for the next day for over a half hour. We arrived at 8:53 to find the door locked and a patient inside who kindly opened the door and then Nurse Retched was furious and said they couldn't take any more patients for the evening, which resulted in a run to an ER. Why? Because we care, we're good kids, and it is the right thing to do. Who are we to judge and make these decisions that life is over? Maybe if things are as bad as you say for your loved one than you pull back a bit and start focusing a bit more on you, a bit less on them.

I sort of went through this with my brother who was our dad's chief caretaker and he kept insisting that hospice bring in iv fluids so Dad would perk up - and I remember saying - perk up for what ? so he can have another week of no eating, no drinking, continuous sleeping (except at night) - and truly no real quality of
life -
Yes i also wanted my dad back to where he had been - but that just wasn't going
to happen and this was the new normal in our lives. It only lasts for so long - and we grieve the person they were. There will come a time - I do know what you are feeling.

ExhaustedOne- I hear much pain in the question you asked. So many people here have offered their sincere and honest answers. My Father thrives only because of the care he receives from my husband and me. Without us, he would surely give up. Other family members could help more if they wanted to but they don't. My question is how can people not help? How do they turn away and pretend it doesn't exist? What's wrong with them not us! For me, I honestly could not put my head down on my pillow every night if I didn't help my Father. The same goes for my husband. Why do we suffer for our loved ones? I believe those of us who do this day in and day out know the why. We have to only look into our heart, and we will find the answer. It's an overwhelming and intense feeling to do what is right. Our empathy and caring for someone who needs us and our strength is a powerful force. Even when someone is undeserving we offer our help.

TerriLou says:
"I have issues with a worldwide medical community that has given and continues to give so much time, money and research efforts to healing heart disease, cancer and other illnesses that we now have a growing population of people who are surviving multiple chronic illnesses only to be left with dementia for a decade or even two not even knowing who they are or who their family is. I doubt anyone in their right mind would consider this to be "quality of life" or would choose to live out their last years this way. If I were diagnosed with dementia, I would not engage in treatment or would stop all treatments for other chronic illnesses. The government funnels funds into research, maybe they can funnel more funds into helping healthy people survive caretaking!"

The dilemma here is yes, medical intervention has helped to contain or cure many diseases and illnesses, but where would you draw the line ? Many who have been "cured", like yourself, can go on to enjoy MANY years, and not all end up with dementia. There are others who have had NO medical issues or interventions, yet are now on this path. We have no crystal ball to see who will or will not develop one of these horrible life-sucking conditions! Should we forgo all medical progress? While pursuing treatments and cures, they just might finally figure this one out and stop or prevent dementias.

Ones "quality of life" is all we can use to determine whether to continue treatments or switch to palliative care. Would the person choose to live out the remainder of their life, knowing they are being robbed of memory, even if they can still function on some level? Probably not, however they are not in a state to make that decision, so we have to make the choices. Although you indicate that you would opt out of treatments were you diagnosed with dementia, by the time you get this Dx, you might not be able to make that decision or may be in favor of whatever other treatments you do need/want! If that is what your wish, you need to document it legally, via medical directives. Despite documenting your wishes, family members can and probably will continue treatments decisions for you - this could be out of love, wanting to preserve what time one has left with the LO or considering that if they eliminate treatment, it would be like euthanasia, which many would not opt for.

Why do we do what we do? Everyone's reason is personal, just like every dementia case is unique (despite similarities, not every one follows the exact same path.) Our mother cannot function safely alone, but can still get around (with a walker now), feed, dress, toilet and bathe, still gets some enjoyment out of reading (although she is probably reading the same things over and over.) Her hearing is almost non-existent, and we are still getting treatments for macular degeneration to preserve her eyesight. Does she wish to die? No. Is she firmly rooted in the here and now? Sort of. She may not know what day it is or where she is, but she still has some enjoyment (they just the other day told me she kicked butt playing UNO!!!) She has forgotten the condo she lived in for 20+ years and is focused on their previous home. She is focused on her mother, wanting to call and/or visit, wondering what she is doing on the major holidays, etc. Her mother has been gone about 40 years, so we just fudge the answers for now. Would I stop her BP meds? No. If she were to have a major incident, her wishes were stated in medical directives, so we have a DNR in place. If she has infection or some treatable condition, we will treat it.

I do feel for those of you who are doing this in your home or the LOs. I could not do this. I knew it would be very difficult/impossible for me to physically care for her myself, brothers are clueless about what it really takes! Even worse are those who never had a real loving relationship, are accused of various deeds, are jeopardizing their health or own financial futures to provide this care

I forgot to add (but was at 0 characters left anyway!):

For those who have no medical issues other than dementia, there would be no medical treatments to stop or to forego. Yet you would still have the issue of the person needing care. So eliminating any medical treatment to prevent prolonging life would not apply... Skipping any major interventions for conditions that might pop up (cancer, heart failure, etc) would be on the decision table, but certainly I would not opt for any major surgery or chemo for mom (95) should anything pop up. She is actually the last holdout on both sides of the family, and did not really develop dementia until she was 90+.

Along with my other comments about whether we should provide interventions or not, my dad could have died when he was in his early 40s due to a bad heart valve and aneurysm on the aorta, both fixed at the same time. He lived to be 83, mostly declined due to bad back and dementia in the last few years. He had a second valve replacement, same valve, many years later, but he got a good 20 years out of the first, when they say more like 10. So, is medical intervention worth it? I vote yes for most situations. He had a very good outcome with this surgery and lived to enjoy MANY more years! Would I put mom, at 95 with dementia through that now? No way! If he needed another, in his sad condition near the end? No, but that would have been mom's decision (if she asked us our opinion, we could respond, but she was still competent and would have to make the final decision.)

So, this really is not a cut and dry situation. For mom, other than BP meds, she is relatively healthy, so the beat goes on....

I can speak only for myself and give my own personal comments. First, I imagine that many of the people we look after were once normal, loving human beings and maybe they did a lot for us in those days. Or, perhaps we were brainwashed by our elders that it is our "duty" to care for them when they need help. Or perhaps we do it for financial reasons - no one has the means to put the person somewhere other than with the caretakers, regardless of the effect on the remaining caretakers, and the list goes on. What each caretaker must realize is this.....when people get old or sick or have mental problems, they are no longer who they once were and nothing is going to change that. It will only get worse. Do not feel guilty if you hate the way you are being forced to live and get only negative trauma from them constantly. But I say YOU must become strong and fight back. By that I mean first have them medically checked out from every angle. Second, if they keep giving you a most difficult time, then no matter how "wrong" it may be to some people, you have to very firmly and strongly tell them their behavior will no longer be tolerated. I know the odds of them understanding that command will most likely fall on deaf ears with no change - but you are saving YOUR sanity by venting and not allowing them to destroy you. If there is any way in the world a way can be found to place them in a safe place to live out their remaining time and allow you to live a normal life and take care of yourself and your own family, then do it and never feel guilty. You had NO choice. They had their time to live their lives. Now it is your turn to live your life. You are not being cruel. You are just being intelligent and facing reality.

I think we do it, first because we love them. They are our parents and took care of us when we weren't able to care for ourselves and that's what families do for each other. That's simplistic and we all know there are varying degrees and family member dynamics but the basics are the same. I was raised by example not by guilt, to help others and care for the people I love. Heck I was raised to help people I don't know who need help (maybe not to the same degree but you know what I mean) and I get personal pleasure out of being nice to others and helping out when I can, just like I get pleasure out of giving someone I care about the perfect gift for them and the occasion. I take care of my mom because it's important to me. It's important to me that she is cared for, it's important to me things are done a certain way and addressed sooner rather than later when it comes to medical stuff in particular and it's important to me that I do as much of it, that I'm around as much as I can. It's important to me that I spend as much time with her as I can too, selfishly I want time with her before things change more and before we can't interact anymore. I can't possibly just turn her care over to other who don't know her who haven't been the recipients of her nurturing over the years. Also as my brother has pointed out our mom needing more of our help, having these major medical events has created the need for us, my brothers, mother and I to be in touch more regularly, to spend time together and be in each others day to day lives more again. We each have our own families and live in different states so life has gotten in the way as it does and created bigger gaps between out conversations and certainly visits, until mom had her stroke. Now we talk often, see each other much more often and are in each other lives again on a weekly sometimes daily basis. That's a good thing for us, we like each other and we get along well and each of us knows we could never get through this without the others. It has been a blessing in many ways this need to communicate about mom stuff.

These reasons we take on the care of our elders or simply loved ones in need are also the reasons we tend to take on too much and let it engulf our lives, that's the rub of course and the impossible balance to find sometimes. But I can say my mom has always been there for me, when I had surgery, when I couldn't get pout of bed with Lyme disease and no one here new how to treat and she threw a mattress in the back of her car, drove to VT and took me back to CT to see as many specialists as I needed to until I found one I was comfortable with. I can go on of course but she was there for me, dropped everything to care for and help me well after her responsibility for me as a child under 18 was done, why wouldn't I do the same for her? We do it because it's the right thing to do. Not that any of that makes it easy, in fact in many ways for me anyway it makes it harder because she is shrinking away in front of my eyes and I know that she isn't capable of caring for me the same way now.

I think that the world has changed so much in the last hundred years that our beliefs about how to act have got out of date. Yes, it happens – think through the problems of the Catholic Church hierarchy at present. A cover-up of abuse is now not in the best interests of the Church, but that was the belief in the past.

We were brought up in a world where most parents died young and any caring for their own parents had usually been short. Many diseases of ageing were fatal, and care options were not available. Families were larger, many were local, and anyone who moved away was usually ‘gone for ever’. It was more workable to arrange care at home, even though at least one carer usually bore the burden. My own grandmother was the last daughter who was left with the care of her parents until they died when she was aged 40, and then married just in time to get pregnant. It was a different world. In families where there was money, it was usually controlled by the parents who had real power to call the shots about inheritance, which was yet one more buttress to the idea that adult children were obliged to care.

The world of the Bible and the other books of religion was often comparable in morals, but very very different from today in the details of living. A recent post said that ‘there is nothing in the Bible to support putting your parents into a home’ – a startling reaction to the obvious fact that there weren’t any homes! Morals and the way of life can be difficult to disentangle. Jesus’ comments on divorce in the Sermon on the Mount were made at a time when a husband who divorced his wife usually condemned her to destitution or prostitution. You can more easily see the remainder of the Sermon as an unchanged basis for an ethical life.

Many of us on this site have strong ‘religious’ beliefs about how to act, irrespective of their actual religion. Perhaps it would help us to focus on the ‘love’ morals to work out the best thing for us to do. This includes the ability to use our own ‘talents’ for ourselves, our partners and children, and our wider lives. There is nothing in the Bible to support the idea that parents’ ‘wants’ come first, even if the Commandment to ‘honour’ suggests that we should try to meet their ‘needs’

That could be deemed a multi-faceted question, e.g. Answers:
#1 Because of love.
#2 Because we would go to the moon and back 100x over for our LO.
#3 Because we may be perfectionists.
#4 Because wouldn't we want the same for our aging selves?

It is a moment by moment struggle. Every bite, drink and trip to the bathroom is instigated by me or it would never happen. She resents me for most of it. She has been my rock and I love her, but sometimes I feel guilty for prolonging a life she is totally over. But I will continue until God decides it’s time.

Some recent reports about the continuing pervasiveness of lead in older homes, pipes, etc has been percolating in my head... I got curious about this because those reports indicate that lead, once in the body, remains in the body. It is particularly bad for children as it can affect their growing bodies, and in particular their growing brains - the effects cannot be washed away. Once there, the damage is done. If the source is removed, it can be stabilized, but it will never get better, sadly.

So, given the relative tsunami of dementia we are currently dealing with (yes, modern science has contributed greatly to longer life spans, so that plays into this as well) I was curious to know if anyone was exploring this idea that perhaps life-long exposure to lower levels are contributing to this current tsunami.

Consider that before lead was banned from gas, paint, emissions from power/mfg plants, etc it was VERY prevalent in the environment (phase out began around 1970). Those emissions also end up deposited in the soil and water too, which can eventually end up in us! A great deal of lead inhaled, ingested, or due to other exposure is stored in the bones, but according to some studies, "...in times of higher bone turnover such as during pregnancy, lactation, and osteoporosis..." that lead gets into the bloodstream and can wreak havoc on multiple organs, including the brain!! Osteoporosis is generally age related...

From http://www.sciencemag.org/news/2013/12/bolstering-link-between-alzheimer-s-disease-and-lead-exposure:

"... Though neuroscientists say more work is needed to confirm the connection, the research suggests that people exposed to lead as children—as many in America used to be before it was eliminated from paint, car emissions, water, and soil—could have an increased risk of the common, late-onset form of Alzheimer’s disease." I consider mom a VERY late onset - she was over 90. None of her siblings showed signs of this - yes they died younger than her, from other conditions, but none were young and none showed signs of dementia.

Now, there is no proof as yet, and studying this is difficult because of the time spans involved, while also trying to rule out any other factors, including genetics, but it is interesting nonetheless. I am no conspiracy theorist, just looking into what others might be finding, if anything. We who are dealing with this tsunami are mostly in that age group of early exposure... It is bad enough having to take care of someone with these afflictions, but to also have to concern oneself with 'will I get this too?' is nerve-wracking! We cannot change what will be, but that fear is still there, lurking in the back of the mind....

Perhaps in the near future there will be much less of this going on, as we who were overexposed to lead pass on and those who were not as heavily impacted age....

Just some thoughts: My mother’s 83 year old little sister came to stay with the family for ten days. She flew by herself from Seattle. Every day, she visited my mother and father in the nursing home. We were all so grateful that my mother’s mental health was good during this time. It was a good visit. My aunt’s visit was poignant, in that she looks just like the eldest sister who died a few years ago, and she also reminded us of how my mom used to be.
When I visit the nursing home, I try to speak to all the residents, I asked Mary today how she was doing and she replied “Just existing”. It was so sad. I asked if I could pray for her and she said yes, so I did out loud, right then and there. Why do some people live to a great age, vibrant, and full of life, only to die after a short illness, and why do some painfully and interminably live out their lives with little quality?
So many people have given such wonderful, thought-provoking responses to the original poster. All so valid and true to their situations. I surely don’t know why we try so hard, but having been created in God’s image, it is very important that we do try, to the best of our abilities.

Love is the answer.
Treeartist had LLama had good words to say on the matter.

We never know the purpose of a person, we can only see through these human eyes. But everyone has a purpose and it is not for us to question what ones purpose may or may not be.

But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.
Isaiah 64:8
Nay but, O man, who art thou that repliest against God? Shall the thing formed say to him that formed it, Why hast thou made me thus?
Romans 9:20

Sometimes I think it is a little bit of "There but for the grace of God..." I too care for someone many shy away from. We all hopefully, will get older. We cannot predict what condition we may be in. I hope there is a kind heart out there that will treat me with kindness.

I do everything that I can because I feel it is the right thing to do. So I guess you could say "obligation". Even though it's hard - sometimes difficult. At times a thankless job. It's fine for now but I sometimes wonder what is down the line. It could be a very long haul. I sometimes think God put me here to do just this...take care of my mother, provide her a place to live, etc. I have no husband or kids of my own. I'm not sure what will happen to ME down the road (when I get older). It can cause one to wake up in the middle of night with worry - but life is what it is. And I try not to worry too much - what good does it do? But give you wrinkles and grey hair!. I try and keep a sense of humor and good friends close because I get virtually no assistance from family. People are living so long now - and I think it's ridicules the way they are sometimes kept alive with machines - to what purpose? It's not natural or beneficial to anyone IMO.;

I have been reading the comments to this post for a few days thinking of responding. I am caring for my husband who I can no longer take care of by myself -- he has become bedridden and can only be moved with a Hoyer lift and the aid of me, my very strong son, and another aid. He is in a board and care home -- well taken care of. I visit daily and still must help physically -- change bandages, monitor skin and any wounds, do exercises with him. He has some cognitive issues but is present and knows what is happening. He does not really engage with me -- when I visit he reads his newspaper and watches his shows. But I visit daily (we have tried games - didn't really work) share events, read my book. I also monitor his symptoms and make sure he is well cared for.
I completely understand where you are coming from -- are we just prolonging the inevitable? I am sure we are. Is it for the better? I don't think so.
We have been married for 52 years. It was not always a bed of roses. There were bad and hard times. I cannot/will not have him go through this alone. I am not lonely as my DH has been checked out re decisions and conversations for several years and I am used to handling everything by myself. I have wonderful understanding friends. But I am sad and feel so bad for him -- I cry a lot, I find myself unable to make silly decisions (not the big ones - they must get done), I am angry at the way things are now.
The end is inevitable but how long and how much suffering until it comes.
Before my DH had his last incident and went into care, I asked a friend who's wife is in care if it was easier now. He said no. I thought that was odd. Now I know what he meant -- it is physically a bit easier and I can sleep all night but psychologically so much more difficult.
My new life goal is to get myself to a place where my kids don't have to do all this for me.. not sure how doable that will be but will try.
For now - I must concentrate on making my DH's life the best it can be under the circumstances .. whatever that means.
Thanks for your question and the posts that followed. This is very hard stuff.