How has caregiving changed your views of life and aging?

Tinyblu, I agree with you. This whole caregiver thing came out of the blue for me.... for some strange reason I never pictured my parents being elderly... plus when they were walking 2 miles per day at 86 and 91... and still driving at that age..... I just thought they would go on forever.

A good friend of mine, both she [45+] and I [65+] have no children, so our outlook is a tad bit different. We both agreed we don't want to keep on living when we can no longer be contributing to society, like doing volunteer work. Plus it's not like she and I are waiting to see a child get married, have their first child, or that grandchild graduate from college, all those milestones.

I, too, wish my parents would move to a more elder friendly environment as being in a 3 story home with all those stairs at their age doesn't make much sense... but they refuse to move. Every time the telephone rings, I go into a panic thinking it might be bad news... and forget about sleeping through the night when one's mind is racing.

The other day a nurse said to my sig other how blessed he is to have elders [my parents who are now mid-90's] at that age.... he looked at her and said "I wouldn't want to live that way at any age, that's no life".

It's made me aware that I need to get my affairs in order earlier than I had planned. We have a few basic things, but I told hub the other day we need to sit and really get this all figured out soon. My parents too seemed to be humming along fine until last year and then boom! The decline has been steady but really grew more this year. I'm 51, my hub is 45 and we are exhausted. We don't have kids either and as I told my mom having children is no guarantee that they will take care of you when you become an elder or get sick and require care. We see those stories here everyday and I'm living it as my brother does the bare minimum to help.

I too jump when the phone rings at odd hours thinking oh Lord this must be it, and that's not fun to contend with, not to mention our nerves. It's just so much you don't know or expect that comes with the responsibility. The fact is people are living longer and there needs to be more attention and action with elder care in general.

The other thing it has changed, or maybe better emphasized, is the importance of taking care of all aspects of my health as best I can. My parents live next door to a widow who is 91, still does financial consulting, drives, takes care of her blind daughter who is 59 and takes food to my parents asking if they need help (they are 86 and 84). She has all her marbles too and easily looks no older than maybe mid 70s. She has always taken good care of herself and in her case the investment paid off as far as I'm concerned. I don't want to just stop living because I turn a certain age, but I want to live well and die well Lord willing. I sometimes think Lord the merciful thing is maybe take them home before it gets to a point where they are just existing. I don't want to be kept alive just for the sake of it that's for sure, but will do all I can short of that to live the best life I can.

To end on a lighter note, it has changed my view of my own age. When I was 49 I mourned turning 50. I thought another decade.....though I didn't feel it at all and still don't. I hope I still have a lot of good life left in me and makes me appreciate better the good health I have now and hope to keep.

As I had mentioned above about my parents walking 2 miles a day and still driving later in life.... six years later you wouldn't think they were the same people. Seemed like every new birthday was like 10 years of aging :(

Modern science is keeping my parents alive.... without blood pressure pills and whatever else they are taking for their hearts, probably both of my parents would have passed on many years ago.

Then I look at Mom today, modern science has no cure for macular degeneration of her eyes and how she loved to read and watch football.... modern science cannot bring back hearing to the elderly who's ears have aged to a point no hearing aid would work. We see ads for calcium, and my Mom was big time taking calcium... now she walks so hunched over I am surprised she can breath.

See all that makes me not want to take meds.... and before I can't think for myself, I might want to sign some legal document saying do not give me any prescription medicine except for pain. Forget the blood pressure pills, and any of the dozens of pills I see my parents take. For me, in my opinion, it's just not worth it.

FFlyer, yes I recall reading some of your posts about how well your parents got along not too long ago:-) It seems literally things can change in a twinkle of the eye!

And I agree on modern medicine. It has good and bad points sometimes. It's great meds can help curb illnesses and in some cases make you well depending on the situation. But I also agree about not wanting to take what seems like a billion pills everyday. My mom takes no less than 12 meds everyday and she does it pretty well still. I arrange them for her every week. It's a pain in the butt and I hope if I live that long I'm not pill popping left and right. In her case, the main nemesis and reason for having to take so much lies at the door of diabetes without question. My dad only has to take one BP med a day and that's like asking him to take the 12 she does. He can't hear and won't get an hearing aid or try at all. It makes me so mad sometimes. It feels like a crapshoot sometimes. I definitely hear what you're saying.

Caregiving has profoundly changed my views on life and aging. When my parents started going down hill about 3 years ago, and I suddenly realised that I WAS ALL THERE IS, at first I just freaked out, then got pissed, "Why me lord" then got busy getting affairs in order, and haven't stopped since. And yea, the phone calls. I get a knot in my stomach every time the damn phone rings.

I was talking to a friend who's about my age and our Moms are both mid 80s. She was talking about how her Mom still plays 9 holes of golf once a week. HUH! My Mom might get out of bed once a week! Oh, to be so lucky...

And lord yes, the meds......don't get me started. At 60 I'm relatively healthy, no meds, can toilet myself etc, but I sometimes catch myself seriously wondering if I'm going to outlive these guys! How long will this go on?

We talk about life support, getting unplugged and whatnot, but as Freq Flyer said they're on life support now with all the medical procedures and wonder drugs. My Mom has not done anything healthy in 60 years, she's now 84, on buckets full of pills and will probably live to 103. I hoping to make 65.

If any of you guys are still around years from now and see a post from me that Mom is 105 and I need advice on controlling her insulin.............please hunt me down (Your great grandson could trace me on line probably) and arrange to have me humanely put down.

Hey. Great thread for whining eh?

Tinyblu, the new normal that I'm seeing has been very stressfull, finding that not as much can be done to help folks as I thought. Unless someone is family and puts their own lives on hold to caregive, overall, I have given up trying to save people. Now, I have to be more selective in what problem and what person I can assist, and when. I am more grateful that I can solve just one small thing and then move on, it has to be enough for me, but it is never enough for a person in need. There is always someone who needs a little help along the way, but the caregiving for a parent would be impossible for me, because more than just love, they need an actual physically competent caregiver to keep them alive. Quite a challenge to have to do that alone, tiny.

Everylife is valuable, that has not changed.

Before I took care of my Mom I used to think living well past ninety was a good thing.Now I'm not so sure. When I used to visit her at the nursing home and saw the futility of it all. People propped up in their wheelchairs staring at nothing.

If I can't be able bodied and cognizant of whats going on around me when I'm old I'd rather not get there. I take pretty good care of myself but my hubby does not. I fear one day I'm going to be wheeling him around in his wheelchair and wiping his bum. Not exactly what I had in mind for my golden years.

The biggest realization I came to watching my Mom's old age is that this takes money. The income you can live on at 60 is not enough at 80. You have more specialists, more copayments, more OTC meds, assistive devices to buy and maintain, chores and maintenance tasks that you can't do for yourself and have to hire out.

And that assumes staying at home. Assisted living costs more than my Mom's whole income. Most of what I do for her is basically cost containment - she can't afford to hire someone to drive her around, fix things around her house, clean up after her, etc. etc. so this has to be done by family members, for free. Which would be okay once in a while or even non-stop for a short duration but it's an ongoing obligation that ties me to her and to her location, which is not at all what I would have chosen for my golden years.

I actually retired at 56 then went back to work (at the same job) after I saw what was going on with my Mom. I realized I would need more income to retire than I'd previously thought. I kept working until 60.5, when my job fizzled out in the recession. I'd like to still be working, to be honest (I'm 62 now). I'd take my old job back in a heartbeat if business picked up enough to allow that. My retirement income is significantly more than my mother's but I would like it to be more, to be able to save money now for my needs when I'm 80 or 85. I don't have kids and I probably will need assisted living. I don't mind that - I just want to be able to afford a decent place. My spending has become much more careful; I'm always looking for ways to trim more of the fat out of my budget. I wish my mother had worked longer and built up her retirement (she retired at 58) but she doesn't think like that. She just thinks she's happy she has kids to help her out.

Taking care of my parents has made me dread growing old. What has occupied my mind recently is that it will only be 10 more years before I reach the age that most of my ancestors died and my parents' health began to fail. Then I think about my mother and father both having dementia and having a lot of dementia on my mother's side of the family. It's like waiting for the time bomb to go off. And I wonder if I am spending my last good years on earth living in such an unhappy circumstance.

I sound a bit like Supertramp's "Logical Song." We ought to rewrite the words for caregivers. There is one good thing if I were to get sick and die in my 70s. At least I won't run out of money. I have a feeling our SS won't grow as fast as the cost of living.

Gee, now I've totally depressed myself. I wonder if we'll see a mass Boomer exodus to Oregon in the next few decades. I wouldn't want to live like my parents have lived for the last 15 years.

Jessie, I feel the same way... watching the last 3 years of what my parents are dealing with health wise and home wise.

Example, if I lose my hearing but still had my eyesight, then I could deal with that. Or if my knees aren't user friendly and I had to use a rollator walker, ok, that's durable. As long as my mind is somewhat mid-range. But when it becomes a huge combination of so many different things, forgetaboutit.

(Sigh) I thought I would be stoned and kicked off the forum for expressing such a strong (non popular) opinion.

Like others, I have made a conscious decision to take better care of MYSLEF with hopes that I can still be one of those spiffy 80 somethings...

I also have mixed feelings about the wonder drugs that are "helping" our Baby Boomers. My father takes 14 pills a day, and I honestly believe that these miracle drugs, though they are keeping him around, may be affecting his QUALITY of life.

Yes, every life is valuable, but I am watching my father's savings diminish rapidly because its EXPENSIVE to care for him (part time care - 24/7 is about 3 grand a month!!). I can tell that he feels bad most of the time (as I watch him grab his inhaler after taking 10 steps).

It's just really hard to watch how we now almost force humans to stay alive and drug them to keep them around...often at a massive expense... for the sake of "ethics".

I honestly wish I could somehow draw up a document NOW while I'm able bodied and of sound mind to determine my OWN future rather than have it dictated to me by medicine. QUALITY of life is much more important to me than existing.

Caregiving has opened up my eyes and what I see is not a very pretty outlook. Getting old is not filled with dignity. Getting old is very expensive. And, perhaps the biggest shocker to me is the realization that there can be alot of years between the time a person can no longer live on their own and their death. That time frame is what I need to plan for. For me, when I can no longer live on my own it will be time to be placed in a care facility and all medications except for pain meds be stopped. No flu shots, no pneumonia shots, no meds. My life is not to be prolonged by modern medicine. I absolutely DO NOT want my family to take me into their home and care for me as I have done for my parents.
To sum it up: Getting old sucks and I better have my ducks in a row in preparation for it!!

Nojoy, that sounds realistic to me. Scary, isn't it? Where is the dignity, everyone wants to know. Maybe we should ask if we are getting a balanced view to find out if anyone is having an end of life better than what we, as caregivers are aware. Maybe dying an earlier natural death with no one having to care for us?

I don't if my view of the elderly has changed, but I see both good and poor examples of aging.

My mother planned well with her long term care insurance and wisely placed the premiums on auto pay from her personal account. However, she never told me about it. Plus, she never used the riders that she had paid extra premiums on when she needed help at home and still didn't tell me about the plan. I just happened to find it when looking for tax related documents which mom had lied ot me about being filed which they had not for years. Also, mom never told me where he will was. That was another frustrating search. My step-dad did not know about her long term care insurance or where her will was. So, the lessons learned there are,1. if you have long term care insurance tell your spouse and children where it is and when it is time to use it, use it; 2. if you can't handle your taxes anymore tell someone other than your sister (she knew years before I did but did not feel it was her place to tell me) [this is the same aunt who said she thought mom would like a video made for her like my aunt's sons did for her in dubbing her face on Playboy magazines with her name on them as well as playboy bunnies from decades ago when they wore skimpy bikiinis along with the song "she's a brick house playing in the backgroud].3. talk with your children about you desires concerning your final years and your funeral which mom did not do.

Contrast that with my dad, who put all his stuff in order, told me and his step-daughter all we needed to know; was very aware that he needed to tell us things before his mind went; he told me how content he felt about his life as a whole; he still wondered if I ever found out why my mother left him; had everything going to me from the house listed both in the will and on a sheet that he gave me some of which he organized in his upstairs office and so forth. Dad was aware when it was time for someone else to do his taxes and for him to not drive anymore. Now that's the way to do it.

My step-mother who died last year, did not want to discuss the will nor death or anything else about herself. She was very negative. She was her verbally abusive self to dad and to me right up to the very end. Her daughter apologized to me for how her mother treated me over the years. I don't think my step-mom was happy with how her life had turned out overall.

My uncle Bob who just recently passed away had raised 9 children with his wife, dad's sister, who died the year before. He was like my Uncle Kenny who raised 13 children with dad's other sister. They each has their child come into their room one by one for a talk about things they wanted to tell each one. I thought that was very special and have never heard of a parent do that.

So, while I don't think my view of the elderly has changed, I have seen both good and poor examples of how to age and get ready for death. I about think that how we age has a lot to do with how we lived before we became elderly. I have encourage my boys to try to live well, learn from their mistakes, respond to adversity well and they will likely reach old age like my dad with a sense of contentment with a few questions left over. In fact, that's what I've been telling all the younger folks that I come in contact with. It appears to me that does make a difference.

Since I have worked with every kind of suffering for elders for many years now, I know if I feel myself slipping, or it is pointed out to me, I will take myself out..... I would not do this to my children, under any circumstances, and I refuse to have no quality of life because the laws of land , and religion, say you can't end your own life..... nope..... will not put myself thru the things I have seen and experienced with others.

Really great question.
My husband died at 63 after a horrible fight with cancer. It was awful for me and the kids to watch this wonderful man suffer so much pain. But he died with dignity and at the top of his game. I have wonderful memories of our life together and of his valiant struggle with cancer.
By contrast, his 90 yr old mother (dementia) has been living in a bed in my living room for 3 years. She is angry, miserable, bitter, etc. and that's how I will remember her.

There are worse things than dying young.
I agree with nojoy. If I can no longer live on my own, I want to go to a care facility - pain meds only.
Life is a precious gift but it seems as though modern medicine has tangled with the life cycle and is keeping old people hanging............ too long.

Cmag, we have similar experiences. My mom has never talked about death, won't discuss anything about it, even talking insurance she gets her upset. I think in part because my sister died in childhood and she said her dad committed suicide before I was born. So anything dealing with death is almost off limits. Dad told us a few things but not a lot. I know when they go I will have my work cut out for me on top of the grief. I took notes and pictures so I at least know who to contact but not an ideal way to have to deal with this. Don't even talk about anything legal.

My pastor told me once, you know I took my grand dad out to breakfast not too long after his wife died and he was so happy, had a good outlook on life and carried himself well for a 79 year old. His grand dad told him on the way back, son, that was the best breakfast today, then had a massive heart attack and died in the car while he was driving. He said he used to think what a terrible way to go, but now since his mom has advanced dementia and several of her relatives, he said his mind has totally changed and sees it for the blessing it was at the time.

Having to be responsible for my cousin, who has dementia, turned my life around. It feels like I am always on call, even though she is in Memory Care. I have a responsibility to make sure she is getting the best care and having her needs met. I'm her second cousin and I see many whose own children don't do that. Just because you have kids and family members doesn't mean you will have someone care for you when you are elderly.

I also help care for my parents who are in their 70's. They have average health, but for seniors, that still requires regular doctor visits and daily meds. When you are with people of their age, there are so many funerals. It's depressing. There are so many people to visit in the nursing homes and hospitals. I don't know of any way to escape it. Until I moved in to help with them, I was not exposed to this much talk of funerals, rest homes, illness, disability. It can be depressing. I'm too young for this. I thank God for her every day and pray that mine stay healthy. Its' the mental health that worries me the most.

I think what is so sad is people who have kids so that they can be taken care of when they are elderly. That is not the job of children. What gives any person the right to place that burden on anyone? Sure if the person is sweet, has money is of sound mind, it might not be a burden, but being realistic, it usually is.
I see generations of people who live so much in the moment and spend money and don't save anything so that once they are elderly can't afford to live somewhere that is safe and that can take care of their needs. I guess no one thinks they will get old. But we all know living a long life is often commonplace. We've become so health conscious that we live as my dad says, "too long".
I do not have children and I have a long term care policy. Hopefully it will still be valid if I ever need it. If not, I have planned so I have enough money to take care of my needs.
I am very thankful my dad who only had a high school education and a blue collar job, saved like crazy and can afford to live in IL. I don't know what we'd do if he couldn't.
I also think people should be allowed to end their lives if they choose. Of course you can in, I believe, Oregon.

Harpcat, I totally agree with you, except for one point. I don't think most people have children in order to be taken care of in old age, because, as you said, nobody thinks they will get old. But they do live in the moment, spend every dime, and try to live life to the fullest so that when old age comes around they have no resources. Then they start turning to their children, even if they've said all their lives that they never wanted to be a burden.

A wish is not a plan, it turns out. Unless people take some serious action and make some plans and get some ideas straight in their mind as to how they'll avoid burdening their kids, that's how it turns out. People don't think about assisted living or home help, so they don't know what it costs, and they don't feel any need to save, or postpone retirement until they can really afford it all.

When the walker hits the wheelchair, the kids are called in, and all of society seems to endorse this. Everyone says "Your kids should be helping you. You shouldn't have to live on your own. Move in with one of your kids' families ." And you look like carp if you raise any objections to a life of soul-sucking sacrifice and unending labor. I think society has to change before elderly will change. I think it has to become as shameful to live irresponsibly and then put a burden on your kids as it is now to refuse to help your elderly parents.

My belief that longer isn't necessarily better has strengthened. Living long and well - wonderful. Living long and suffering - not so wonderful. My loved ones know my feelings well and I also have put them in writing.

We often don't have any choices when it comes to how or when we die, but we need to make our end-of-life wishes known to that if there is a turning point, our lives go in the direction that we would have wished.

Take care, my friends,
You are an amazing group of people.
Carol

Thanks for your thoughtful reply CarlaCB.....I have heard parents actually say this that they were glad they had children to take care of them when they get old. In fact even a friend of mine who should know better said this recently. I thought, well I guess that means I'm out of luck! LOL. I've always said, ya never know what type adults the children will become. They may be deadbeats, on drugs, hate their parents, or even die before them etc. and not take care of them or incapable of taking care of them. So children should never be in the equation as you stated. We should all take care of ourselves as we are able financially etc. Some people will think I'm too blunt, but so be it. I won't even depend on my husband or sisters as I have no idea how they or their situation will be since I don't have a crystal ball. If they wish to be there with me or are able to be with me as comfort, wonderful! :)

I completely agree with all that you have said. I never in a million years knew that caretaking for my mother would be so all consuming. Mom is 79 and has colon cancer along with beginnings of dementia. She has lived with me for 17 years in my home so naturally it would fall on me being the only daughter to care for her. My older brothers live in different states. There are numerous emotions that go along with my current situation but once I feel them the final emotion I feel is guilt. My mom has been there for me my whole life. We are very close and granted while I was in high school we did not get along but having my dad pass 21 years ago it has been me and my husband who watch over my mom. I am in the position now of trying to figure out where to place her or hire inhome care. Financially placing her in a facility will be cheaper but the guilt of sending her out of her home forever is what I am struggling with, daily. I agree with you that it makes you fear the aging process and I do have three children but what I have learned from this experience is to be prepared and NEVER put my kids in this position to HAVE to care for me. Adult children should be just that adult children..not caregivers. It changes the whole game and relationship. Sure there are memorable moments but most of them are memories of cleaning up messes and having to endure snarky comments from mom. Over all I am a believer that God put me in this position for a reason so I am just moving through it with as much grace as I can grasp. I appreciate hearing I am doing a good job from people (they tell me this often) but it feels weird to hear that. I mean what else would I be doing? She is my mom and I love her.

I have gotten very down on aging. My Mom died unexpectedly two years ago and then my Dad came to live with me. His Alzheimer's - hidden by my Mom - got worse immediately and before long he had to be in AL for his own safety. A few months ago he went to a nursing home/rehab facility because he can no longer walk or stand and is too combative for PT so he is in alarmed chair/bed all day. He always took good care of his health, and his body is now outliving his mind. It's not pretty or nice or what he would have wanted, and he may continue like this for years. It's very depressing. I have told my own kids that if/when I start to show dementia or Alzheimer's, get me to a doctor for a prescription so that I can choose to end my life my way. I refuse to live the way that my Dad is living; it makes me very sad.

It has made me not want to get that old - because I see what little resources this town has for older people, and I don't think that I would ever have anyone as good as myself as my own caregiver!
It's also scary because I see how thin the line is, with the medical community, about whether an elderly person is capable of making decisions. Doctor saw my dad when he was 'out of it 'due to extreme pain, and decided that he was 'senile' since he could not answers all ten questions. Another doctor saw him later and said that - based upon the first doctor's notes - he did not expect him to be so engaged and alert for his age. If you had no one to be there for you to advocate, you could end up in a bad place. This is very scary and I hope that I don't live long enough to have to worry about it.

About 5 yrs ago my mother said."you expect me to keep going along." No, I was not that naive. She wanted to live alone in her own home in Massachusetts. I live in Maryland and if she moved down here, there would be someone to care for her. No, she said. Then a younger friend of hers told me "she's a frightened, elderly woman." Really? News to me and my sibling. She never let us know! Whoever came up with the phrase "the Golden Years" must have not been right in the head because they are ANYTHING BUT!

Llamalover, I looked up on an on-line dictionary the term "golden years" and noticed an advertisement on the top of the page, it was for Alzheimer's care :P

Carla CB makes some good points about the economics of ageing. I'm somewhat fortunate in that my folks worked and saved, and always lived within their means. So now I have a little something to work with on their behalf. It's not a lot but enough to avoid medicaid for awhile.

But Lordy! So many people blow it all on dumba** stuff, living large and, OOPS! We're old! Holy S...T! We have no where to go....You've gotta take your poor old Dad/Mom in........

Then the really sad situations are where the kids are a chip of the old block and they have no resources to help unless they sell the boat, jet skis, the Harley's, motor home, time share codo, gun collection, take out a third mortgage on the vacation cottage. Oh....I forgot the $600 per month cable, DSL, cell phone, Netflix, bills.

We all know folks like this. I have friends of my generation who I know damn good and well will end up in a Wallmart parking lot living in what's left of their 150K RV. And they still will owe 10 years payments.

There are certainly people who have simply been crushed by our economy through no fault of their own nd the safety net has gotten thinner, but it's hard to have sympathy for the campaign and diamonds crowd.

freqflyer:That's a good one! LOL!