How has caregiving changed your views of life and aging?

I'm a bit surprised that this thread took a political turn midway and after reading some of those posts I decided to weigh in..............

I am a college grad and former teacher.
I am a widowed business owner and employ 31 people.
Believe me I know hard work and commitment.
I am a devoted Christian.
I love my country.
I am proudly voting for Donald Trump.
Please.............don't buy into media who create their own reality from sound bites - media who characterize Trump supporters as uneducated fools.
Sorry folks - they are so wrong.

I find myself trying to pull things together and plan better than my mother did while wondering if I will live as long as my dad has lived although his quality of life has been very low these past few years. I'm trying to follow his example of being realistic, telling others what they need to know about financial and other things.

My wife and I have yet to choose who is going to be our medical and durable POA. However, I do find myself planning my own funeral, i.e. songs plus some things that I don't want said during my funeral service and some things I want on my grave site which is already purchased. Sort of morbid to be planning your own funeral at 59, but I am.

I think my experience with my mother and now with my dad has motivated my sons to wonder what we want down through the years; where important information is like in the safety deposit boxes that we have already given them the right of access to. I've told them which safety deposit box the deeds to our cemetery plots are, where my term life insurance policy is; and where our wills are on file plus where the keys for the safety deposit boxes are. I will give them other important information about our various accounts, credit cards, automatic payments of various monthly bills which will require them having my master password to everything that I have in a secure place.

My wife and I got a late start in marriage and having children. Thus, ours are about to finish graduate school. My dad married a bit late as well, but he was still working when I finished graduate school and not on disability like I am. I doubt that my wife and I will be as well off in old age as them, but we should be ok. We are soon going to get joint long term care insurance.

One thing being mom's advocate, medical and durable POA motivated me to do was deal with some family of origin issues. This has been true with dad's decline too, but not like with my mother's.

08/26/16.... I remember my Dad [94] saying that he never thought he and my Mom would live this long. If it wasn't for modern medicine Dad's heart attack would have taken him, and my Mom's high blood pressure would have taken her many years ago [she passed at 98].

Sunflo & Llama, what you wrote made me think of why things are so difficult this generation. In the olden times, people usually did stay with family if they lived past the age of being able to take care of themselves. This didn't happen so much in those days. The elder generation now still have their roots in the older days, where people rarely lived much beyond 70 and women stayed at home. But now that half of the people are living past 80 and nearly 30% are living past 90, the idea of the family caregiver is becoming strained. Many people start needing help when they are in the 80s -- first one parent, then another. Twenty years can pass before caregiving duties are over.

Often someone, usually a daughter, leaves her job, thinking she'll return in a couple of years. It doesn't go like that anymore. People now can live 10-20 years with such poor health that they can't care for themselves. But still they want to be home with family caring for them.

The future will probably be different for caregiving because people will not be so rooted in past traditions. The main question will be how to prepare enough facilities that don't cost so much. It would be kind of cool if there were elder villages here and there, providing that they didn't cost an arm and leg to live there. Getting old in the US cost more than many or most people can afford.

JessieBelle: The possible terrorist story...oh, my, I had the same thought when I had to move 400 miles away into my mother's home...I was like "I hope one just does me in right now...just get it over with...I'm done." Well said, Jessie!

Sunflo: I meant to add BIG SHOUT OUTS to your husband for carrying on like such a trouper/saint! My husband had to carry on at our home by himself...was bitten badly by a cat we had taken in a few yrs back...really bad story...no time right now to go down that road, but phew!

Sunflo: I'm so glad that you posted here because I was able to view my post that I had written a while back. I consider this a volunteer job, because my 40 year plus career is well behind me. I love and look forward to advising every minute of every day! You're right, Sunflo! No one else before us has ever done caregiving as we know it to be today. I agree about the reality of financial burdens and how you MUST set in place long-term care for yourself! We have long-term care set up for ourselves. Glad you do as well. My husband was commenting about a cane he saw on tv and I said "don't you get one of those for me just yet!" (I'll turn 70 in January.)
I'm so sorry to hear of the decline in your mother's mind. The "committed to die in her own house" was my mother's thought, too, though her mind was okay-her body, not so much! For the last part of her life as she demanded to live alone in her own home, that left me no choice but to leave my life and home and move in with her 400 miles away! Are you sure you're not me? OMG...the brother who didn't/doesn't help sounds identical to my situation. I tell my daughter that I won't be/I refuse to be such a problem as I age! My mother said "I'm so glad I stayed in my own home." I said "well, I'm not and now you've lost your ability to choose"...she didn't like me moving in with her....well, too bad because my late mother was legally blind, had CHF, A-fib, macular degeneration, incontinence, loss of hearing, olfactory and vision sense, loss of bowel control and blood pressure of 60 over 40...so "I can't have you living alone," I told her! Love your pharma cocktail idea and I know and am sorry that your mother is putting you through this! DO NOT beat yourself up over it...you're doing a miraculous job, even though I wish you didn't have to go through this. Love your comments about elder care...or the lack there of, rather! My late mother was in the rehab unit of an NH...they had a family meeting (my brother had finally arrived for his 7 day stint; I had already been there for 6 months) and they said to my mother "maam, you're too well to stay here." They got it wrong...dead wrong, literally...less than 48 hrs later at the NH my late mother had a stroke there! She later deceased at the hospital. Come back on here to unburden, please Sunflo, any time.

I had a sudden realization the other day when I was getting out of my car at the grocery store. I thought about what if a terrorist started shooting. And I realized I didn't care if one shot me. And I'm not even depressed. After going through aging with my father, then my mother -- both having dementia -- I realize there are worse things than getting shot. I might feel different if I was actually looking at the gun pointed my way, but it made me realize that caregiving has taken away the enjoyment of my golden years. What is going on is not right or fair... but no one ever said life was right or fair.

Sunflo, every word you wrote is true.

I'm so grateful for this post. WE ARE THE PIONEERS for this; no generation before us lived this long; if they did, they were taken in by one unfortunate son or daughter and the female didn't have a job or quit, etc. to care for the loved one. AND they didn't have the fast pace schedule we have today, kids activities, career, exercise classes, job-travel, pressure to build wealth and pay bills -- cause now we know how expensive care is, expensive medicines and the reality that social security and a little savings just wont cut it.

This site has been a godsend t to my mental health and what I'm going through with my mother (93). Her physical health is great (no meds) but her mental health is shot. I'm her only contact and she fights me on everything. She is committed to die in her house. Everytime a crisis occurs its my fault. We have no relationship anymore.

I look in the mirror or at my husband every day; yes every day and beg that I don't want to be this way or live like mom. I tell anyone who will listen (including my children - though they dismiss and dont' want to hear it) to please put me in residential care whether I want it or not and do it sooner than later -- at the first sign of craziness. My husband and I both have longterm care. My husband's a saint; because mom has made the last 4 yrs of our life hell and sucked most of the joy for doing things or experiencing joy awful. I resent her. I resent my brother for not helping. I'm jealous of friends who's parents go to residential care or accept care in their home. I dislike myself for feeling this way and feeling like an uncaring daughter (which I have to hide and put on a good face to family and friends).

I wish there were a pharma cocktail that you could get from the doctor and put yourself out of your own misery "at your choosing". I pray that "die with dignity" orr "right to die" becomes law in every state and you and your dr/family can make those loving decisions in the end without fear, stigma or legal repercussion."

I resent this burden I feel with worrying about my mom everyday, every time the phone rings, and the next shoe to drop. My parents wrote a DPOA that is impossible to enforce because it requires a doctor to write incompetency and there are absolutely no doctors willing to do it; they pass it off to a psyche eval which mom refuses. She had a stroke and I still couldn't get a psyche evaluation. The med system is a mess for elders. Their only job is to stabilize (with a bunch of pills) and discharge them as quickly as possible so the elder doesn't die "on their watch" and cause a "ding" on the hospital record.

Lets all live a full, loving, joyful life.

PhoenixDaughter: I chip away. I mean I really don't have to be on this site any longer as my late mother has left this mortal world. However, I am the type of person who wants to help individuals so I consider it vital to continue posting on this site, e.g. someone might be having a REALLY HORRIFIC DAY and I MAY, JUST MAY be able to put a smile on their face for a minute or two.

PhoenixDaughter: Rock on! Excellent post! Kudos to you! Big shout outs!!!!!

I think the one thing I have become is a bloody nightmare when anyone doesn't see what we need to function at base level. I no longer say its alright I can manage - because I bloody well shouldn't have to 'just manage'

I now lock the wheelchair and go in and ask for help - it hasn't been refused yet - I suspect the look on my face says - make my day - just try and say no here!

I am no grand campaigner for rights for the elderly - I still believe in assisted suicide and I still believe in euthanasia FOR ME not for anyone else. But that said if you want to live then you have the basic human right to have people support that not hinder it by creating steps where ramps would do and those stupid lipped doors that look flat till you nearly tip someone out of the wheelchair when you realise they aren't. Sidewalks / pavements that have broken slabs in them so you can't function safely. Car parks that have shingle on them - ever tried pushing a chair over that!

When the counter is to high for them to even see the person in the wheelchair, when people talk to you and ask you how the person in the chair is I always say - ask her - she isn't deaf and she can speak - they might not get a coherent answer but they will get an answer.

There are an infinite number of examples all of which we face as caregivers but lets not give up people lets keep on and on chipping away - oh by the way I forgot chipping away was a caregiving job too!!!!!!!

careisgiving: Where my late mother had to go to the doctor's (the next town over from her) was very poor in the elder care category! You had to be practically mean and obnoxious (which I am neither) to get the doctor to provide proper care for your LO. My mother's doctor would actually ask her "so when is your daughter due to arrive?" As I lived 400 miles away, the doctor knew when I showed up that she would have "to get on her game." I understand your troubles with your mom-believe me, I get it! I feel for you!

I grew as the only child. I'll say the biggest thing I've learned from caregiving is mobility challenges the aging face. My mother has been bedridden for the last few years. I have a device installed in my crappy car that runs on the car battery and transfers her from the wheelchair into the passenger seat so I can take her once a week. I get irritated at businesses that don't offer wheelchair accessibility services. I wasn't insensitive to this before, I just have a greater awareness of ease of convenience for this feature. Also, mobility challenges when dealing with, well, going to the bathroom! It's not pretty, folks, and I know you all know what I'm talking about. Since caregiving, I'm a little bit more thoughtful when I see an elderly person struggle to reach that item on the shelf in the grocery store. I'm not trying to be martyr for the elderly. I'm just more aware of their day-to-day struggles.

Careisgiving: Your response should be "I am the one-woman show here! What don't you understand? !?!,!?!?!"

If I hear one more time "Oh, you're just a caregiver...So...What do you do all day long?" - my head will explode. It's the "just" that throws me nearly off over the edge. When I hear "just", I hear "you have no skills...no value...no intelligence." I immediately reply with "Hmm...So...you're just a stay-at-home mother...What do you DO ALL DAY?!" The look of insult on the mother's face makes me chuckle. I then follow-up "So, how does it feel when someone passes judgement on your life? The only difference between you and me is that my child - is 74 years old - but - my 'child' will never walk again...she'll never feed herself again...she'll never be able to bathe, to dress, to feed herself, to use the toilet again...she'll never be able to communicate coherently again...she'll never be able to make friends again...she'll never be able to enjoy the companionship of her husband again...she'll never be 'healthy' again and her last months...years will be filled with nothing but physical and emotional pain and this and that medical issues...she's the last surviving member of her family and has no one to discuss her childhood memories with before she passes on to the other side...she misses her own parents as her source of comfort from the fear of the unknown when she does crossover...So, please...keep your judgements to yourself because if you're blessed to have a 'healthy' and able-bodied child, then you can never - ever - understand my stresses of watching my 'child' decline and not be able to anything about it - and cry often in silence because I'm so tired of seeing my 'child' suffer. You can never understand how much my heart aches for my 'child's' poor and no quality of life." Whenever I say this, the crickets are chirping loudly - because what I've said is my truth. :-)

Careisgiving you put forward a really valid point there. I AM better aware of what the future holds for me i.e. after caregiving...in fact I am damned certain I know a lot more than most of my peers. All they see is me sitting on my arse watching TV and chatting to Mum which is the least of the things I do. They are ignorant of the day to day issues that everyone would do for themselves but as a caregiver you do twice over. Just the toiletting alone can take hours out of my day, the personal hygiene of washing her cleaning teeth for her all take time out of a day sometimes minutes ...on bad days hours. Then count how many hours of continuous sleep you get of a night - if I am lucky ...2. Don't even think about the washing and ironing and changing sheets etc. Let alone the ordering of products so that there is a constant stock of them for your Mum.

When I was on a vent to someone I know but don't know terribly well I suddenly realised how clueless they actually were....she said well you have it easy really your Mum is no bother is she - you can't have much to do, just wiping a bottom doesn't take long!.

Well I didn't blow a gasket I just explained to her that wiping a bottom was the easy bit ensuring all the other parts of the genitalia were clean and creamed with a cream that has to be rubbed in was not so easy especially when you have to lay the person on the bed carefully wash and dry the area and then apply the barrier cream and this PERSON is YOUR MUM. Sorry to be so graphic but her face was a picture ....I thought she was going to throw up. She hadn't considered incontinence at all or the effect it has on very tender very fragile flesh.

The she started asking more questions. I suspect that when the time comes she wont care give but like many of you sensible ones has cared and ensured that professionals do the job!!!!!

Careisgiving: I hear you!

I get very bitter whenever people say "Oh, you're such a good daughter...Your parents are so lucky to have you..." and then they immediately follow-up with "I would never want my children to take care of me...I would never want to be a burden on them...I'm putting myself in a home so my they can have a life..." Society needs to learn to shut-up every once in a while. They need to learn to not pass judgement until they're in our shoes. I get so frustrated at the ignorance, insensitivity and lack of knowledge people have when they're so ready to pass judgement on my situation. I had dreams before both parents needed my help - and I can definitely state that when I was a kid growing up, I never dreamed of becoming a full-time caregiver; never on the playground did I tell my childhood friends after playing a round Red rover and drinking lemonade "I can't wait until I can take care of my aging parents! I'm so looking forward to dedicating my life 24x7 to my parents while missing out on having the family, having the successful career, and earning the doctorate I've always wanted. I can't wait to feel the lack of self-worth all caregivers feel at some point!! I want to feel degraded - all the time!" Obviously my situation now is not what I enjoy - but - I'll also state that I just know that I'm on this difficult journey for a reason and in the end I have to believe it's going to workout for me. I have to believe there's a bigger plan for me down the road but I need to learn whatever lessons now before I reach the end of this road. I'm definitely more prepared for how to deal with my aging issues than my friends are in my age group - they have no clue and will be shocked at what's it's like to age in America. I'm thankful I have the time to ramp-up my finances so I have some choices available when I'm looking for retirement homes. I also think by being a caregiver, I've learned what's important in a friendship and in a relationship with a significant other. I'm also not stressed out whenever I'm having to face a difficult situation professionally - because been through hell and back multiple times in dealing with my aging parents that I can handle anything at this point! I've matured a lot in how to overall handle life, so to speak. I wasn't a bad person before. I just became better, more put-together (if this makes sense) during my caregiving process and I'll move through life more productively as a result. If I had to do it all over again, frankly, I would become my parents' caregiver again but this time around I would plan it more efficiently and effectively so I can balance having a life of my own. I'm just now beginning to create my life and putting me first, for once in nearly a decade. Mom is 74 but has the body of a 94 year-old. Her time is coming. It's time for me put in motion my goals. It's my time now. I wasn't emotionally ready for this until recently. But, finally, I'm on my way. I want to accomplish a lot in life. And, most importantly, I want to make my now deceased father proud of me because he would never want me to give up on my dreams. I just had to push through and jump over all the crazy long bumps on the road of taking care of my parents, crossing the finishing line while wearing a bunch of medals, then taking a hard right off the exit ramp and going on to the next road - which is my road of my goals and dreams - finally! :-)

Pheonix I understand where u r coming from. Oue experience is different but the same in a way. I have sacraficed career and pertinent relationships way before I realized the implications involved in dedicating oneself to principles and morals. As I live with decisions Ive made in dedication I struggle with confusion anger resentment bitterness at any given miment. Im still tryin to figure it out and maintain my health sanity and finanicial security. I apreciate other perspectives it helps and is food for thought. I truly truly appreciate where you are coming from.

When communities view it as a daughter (or son's) duty to honour their parents and ergo look after them and caregive I have an issue. Ensure they are cared for - oh yes that is something that I consider to be essential (although not a duty) to caregive though is something entirely different and increasingly I am being told it is an honour to caregive. Big Big difference, Had I seen that my mother was cared for I would still be a senior manager and have a decent pension and a decent quality of life but it wasn't the way of things and I gave up work (long story but difficult to care from 150 miles away with the company I worked for at that time) I therefore gave up my pension my friends and my life. Having moved to an area I hadn't lived in for 35 years I knew no-one and we don't seem to have the same type of support system you have at all. I wouldn't even know what my neighbours were called let alone think they would help - all too busy with their own lives. So a very big difference from your experience.

When I said abuse I mean that governments use the construct of it being your duty to honour your parents by caregiving to avoid putting in place the infrastructure that will support that. When a caregiver is in isolation - THAT is the abuse not of the person they look after but of them. We have laws in this country that prevent working over 48 hours a week - UNLESS YOU ARE A CAREGIVER and then it matters not a jot how many hours you work

Thanks for the input you do lhave a valid point Phoenix. I dont see where the honor part particularly relates to abuse or isolation of care of others. I mean really should say elders because we all help the elder I mean those of us who care. I think it may be a difference in rural and city areas. I live in a large city. Im not saying that all people help the elders but there is a way we help our elderly. I am the main caregiver for my mom. But I get helped in many ways by others. A neighbor who is about 8yrs older than my self takes my mother to pick up her dog food and goes with her to meetings. Everyone keeps tabs on the elderly. We shovel there snow and although its not so direct look out go to the store. I mean for years I took an elderly Jamaican man sunday dinner untill he was put in nursing home. So I understand some of what your saying.

I am truly pleased for you DD (and I do mean that with sincerity). As a non believer and somewhat left of centre though I feel very differently. For me the 'honour thy father and mother' is a construct that saves communities from helping everyone within those communities. Plus for me it seems to mean, in practice, that the construct is wide open to abuse with no support for when it fails. That effectively means that the solid qualities of a country - it's citizenship is rather open to questioning on most levels today.

I don't want to get into a political debate at all but when my own country's (UK) government CUTS money on tackling support for carers, cuts facilities to allow carers respite, forces situations where carers become increasingly isolated and dependent on their friends (like carers retain friends if they have had to move away from their own homes to care!) or on pills to manage their increasing depression using the view that it is an honour to care for your parents, then what is it saying to its nation? That carers are worthless? How can one expect communities to do other than follow their lead?

Yet the whole issue of the aged and the caregiving of the aged is or should be the hottest topic and top of the list. In 1950 in the UK the average life expectancy was about 70 (give or take) By 2010 it had risen to around 80 and it is similar for the USA and it now stands at 82 and rising. That means that a huge number of those people born in 1950 and who were expected to die within the next 4 or 5 years will still be alive for at least another 10 years on top. Bolt on the increase in population and it doesn't take a genius to see that our countries have not prepared themselves for the aging populations we are about to see explode.

Couple with that a growing decline in religious institutions (particularly in inner cities) and I can foresee a recipe for utter disaster if someone somewhere doesn't tackle it soon

Caregiving has changed me alot my views about life just a bit. I believe it is our born duty to take care of and honor our parents. Sometimes I feel cheated, I didnt get hugs and kisses. My father pretended to spank my sister by hitting the dresser with belt for my mom sake and she is like an alien to me. I was raised to be my mothers helper. I didnt take notice or mind until I realize the nastiness and ugliness from my mother and sister for no real cause because I have literally foucused on keeping them bothe happy all my life. It hurt like hell when my father died and I tried to fill in. Well Im taken for granted, disrespected, belittled just about all my life. I feel resentment sometimes and anger. But my view on life remains the same and is even more intensified. Honor my mother and father and give love. I dont like to see anyone hurting because I know deep down what it feels like. I do pray a lot more because its hard especially when my own life has been hindered by the dysfunction in many ways. Coming upon this site is one of the best things thats happend to me. It keeps me sane, I laugh, smile, frown, somethings I don't get but most of all its helping me and making me a better daughter, mother, caregiver and person. Thank you all.

I'm not sure that I had much of a view on caregiving and aging until I became a caregiver and all this stuff with my failing parents hit me like a ton of bricks. I've learned a lot reading and using this forum. Also discovered that most of my friends my age also are going through similar struggles with elderly parents.

Being a Lone Ranger cargiver has good and bad points. I don't have any meddling relatives to fight with but then I don't have anyone to help shoulder the burden either.

It has opened my eyes as to what I want to happen to me as I age. I do not want to end up on multiple life extending meds and spend 20 years with no quality of life. My wife and I have done all the legal stuff, papers are all in order, the problem is, who on earth will administer our wishes about ageing and end of life. There's no kids, just the two of us.

The scary thing is, it's so easy to slowly slip into dementia, lose your ability to control your destiny and end up socked away in a nursing home for years. So what to do.....Hire a law firm as POA? Suicide pact? I now this sounds kinda grim but it's a serious problem for lots of folks with no family left.

Actually caregiving HAS changed one very important aspect of my life. I have made the decision to talk to my children about my wishes for my old age and my eventual death. I have written an advanced directive and they know I have - they don't like it but respect my wishes. I have POAs in place and a DNR in place so that they cannot be overridden and I wear a DNR bracelet and Necklace with information as to where to find said documents in the event I fall ill.

So yes it has changed me in that respect

Windy, you hit it right on center!
I feel as you do.
I bought book(s) on caregiving, and had no time to read them.........duh!!!!
Pulled them closer to me and have one right here on top of the desk... some information is helpful. Some not so much........
Actually, so much is a matter of common sense.
What is VERY TOUGH is caring for parents who hated you growing up, or never cared about you 'really', or ignored you, treated you awful or even abused you. I know somebody first hand that had to care for her dad, and they had never had a father/daughter loving relationship.
This person did care for the dad, till his last breath, at home, in her arms. He had Alz. and was very abusive and violent........at the end.
It is hard to at that late date in life to feel "warm and fuzzy and be thrilled and happy caring for this ogre of person you don't even know!" But.... there was no one else in the cosmos to care for him.
I do admire all caregivers, I do! Now that I am one, I say to myself..........whoah! before mom came to live with us, we were living in "Disneyland". Now, this is the "real" life, and we got to muster up for it.
Like someone said in this thread a few posts ago, "no regrets".............that is my wish.
M88

I think the most important thing I have learned about caregiving is you can only do so much. With my folks I do as much as they wil let me. When this all got dumped on me about 5 years ago I wasn't prepared, didn't understand dementia or much else about eldercare. I was in a constant state of panic. Just couldn't get these guys to do what I wanted!

Ive since learned to pick my battles and accept the fact that stuff is gonna happen no matter how much I worry or plan. We've all calmed down a great deal since I quit trying to impose my will on them.

aging not raging!!!!