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NeedHelpWithMom Asked November 2019

How has caregiving effected your view on your personal aging and death?

I really don’t want to be totally dependent on others for my wellbeing. I don’t want my children being my caregiver. Don’t even know if I would want my husband being my caregiver. Not sure how I feel about a facility either. Would be nice to just go to bed and not wake up when my number is up!


Seeing my mom helpless and needing assistance in so many areas really changed my perspective on things. I couldn’t help but feel like I would never want to live like that.


I didn’t like when these thoughts occurred while caring for mom and they still exists for me even though I no longer care for her.


As most of you know I cared for her for nearly 15 years in my home. My mom is now being cared for by my brother and SIL.


What has been your biggest fears regarding your health and ultimately dying in the future?

Lorraine12 Nov 2019
After working in NH for years and caring for my aunt ,dad and still with my mom I am looking at life through different eyes..
I am lucky to have this time with my mother and LOVE her unconditionally ,but I must admit watching her become more and more handicapped and less independent is SAD ,sometimes I even get a bit upset because I wish she would try harder .....but then I think what life would be like without her,although shes here I get real sad . and do not even want to think that way....but that's off track a bit I just know that I want to plan for my old age better than my parents and my Aunt did ,none of them ever planned to get old ....but we have to face it we ALL GET OLD ...

Texangal81 Nov 2019
My mother, and to a lesser extent my dad before he died, have put me through hell the last few years with health issues that could have been lessened or altogether unavoidable. I can't even begin to recount them because I'll end up typing for days.

I don't have any fears regarding my health. I'm divorced and have no interest in compromising with anyone again so I don't have to worry about a spouse or partner. I've already made my children promise that no matter how young or old I am, if I'm not able to toilet myself and shower, they are to put me in a facility, I don't care where. If I sink into dementia they are to put me in a facility, I don't care where. I hope I remain capable long enough to realize if/when the future is just going to get worse. If so they are to take me to Hawaii while I'm still able to travel because assisted suicide is legal there. I plan on going out on a cloud of morphine or any acceptable substitute while enjoying the black sand beaches.

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freqflyer Nov 2019
For myself, I am holding my retirement hostage after seeing the sticker shock of the cost of getting older when my parents needed caregivers, assisted living, and long-term-care.

My bucket list is now a thimble list :P

As for death, I am not afraid of it. Both my parents learned from their parents the circle of life, and passed that on to me. Be it tomorrow or 10 years from now, I am ready. Got all the legal documents/trust in order. Probably is easier for me [only child] since I have no children, nor nieces or nephews.
NeedHelpWithMom Nov 2019
Wow! I’d love to feel as secure as you do about ‘being ready.’

You’re right about the price of getting old!
Katiekate Nov 2019
I have taken it as my goal to learn as much about the reasons we have obesity, heart failure, diabetes, stroke, etc.

i have changed my entire way of living and eating. I plan to die young at an advanced old age,

seeing the way my friends and family eat...sadly, I expect to outlive them all.
NeedHelpWithMom Nov 2019
Good for you!
SoVeryExhausted Nov 2019
Ive told my adult children that if I get diagnosed with a terminal disease I'm going to hunt down drug dealers and rapist and *off* them. If I get taken out in the process I won't be a burden on them. I'll save the legal system money for housing the criminals. Win /win! Lol. I said or they can dress me funny with a pointy hat with a whirly gig on it.
After the stress I'm dealing with and the impact on my health I do not want them dealing with me.
NeedHelpWithMom Nov 2019
Hahaha, love your sense of humor!
Confounded Nov 2019
I'm 63, minus a few days. I hope my husband will outlive me, and be well cared for (we're working on planning for said care).

Failing That, Second Choice: While the thought of selling everything and cruising the world does beckon, the frightening antics of several who went into old age before me point me straight to an altogether different path.

I'm thinking seriously about getting rid of any vehicle(s) I own, then switching from driver's license to state ID - and *not* Real ID - even if I still drive well - 'cause I want to choose when to stop, plus any real travel skills I once had are already long gone. Then, I want to admit myself ASAP into Independent Living, or Assisted Living, whichever is more appropriate at the time. Seems like the happiest plan for everyone involved.
NeedHelpWithMom Nov 2019
Interesting, about the driving. Do you live in a walkable neighborhood?
lealonnie1 Nov 2019
Suicide pills or a nice bottle of whiskey & an overdose of pain pills will be my demise (and DH as well) if/when the time comes to leave Earth and transition to the next phase of eternal life. We will not be burdening any of our 7 children (combined) with the care and handling of our aged bodies and minds, because it's not fair to them or their families.

The end.
NeedHelpWithMom Nov 2019
Lealonnie,

I bet a lot of people feel as you do. They just won’t admit it.

My uncle did try to kill himself. The nurses and doctors at the VA hospital saved his life. He was so angry when the attempt to slit his wrist didn’t kill him.

I was in my twenties at the time. None of my brothers went to visit him. I was the only one of daddy’s kids that went to see my dad’s older brother. He had cancer.

He had his voice box removed so he used that tool to speak with. It was interesting, he was really hard to understand but when he would curse everyone out, every word was clear! Hahaha.

I loved my uncle. He was a character! He treated me like I was his daughter. He had never married, no children. My dad said no one would have married him because he was a bit rough around the edges. Still, daddy loved his brother and I did too.

The frazzled nurse at the VA just blurted out in a loud voice to me the next morning when I went to visit, “Your uncle is in a bad mood because he tried to kill himself and we saved his life!” I’m sure she had a rough night with him but it destroyed me hearing of his suicide attempt in that way and she humiliated him.

I held back my tears so I wouldn’t upset my uncle. I picked up his frail hand and held it. I told him that I understood that he wanted his misery to end.

My daddy’s side is Scottish/Irish and my uncle had flaming red hair and piercing blue eyes. He had lots of freckles. He had a quick temper but a heart of gold as well.

His true blue eyes always spoke volumes. I have the same blue eyes. So did my daddy’s mom. I never knew her. She died before daddy married my mom. Supposedly, I look like her.

I get it. Sometimes the pain and anguish is just too much to bear. My uncle didn’t live much longer after his suicide attempt.

He asked that his body be donated to science. He did not want any memorial but my parents had one in the chapel of the hospital anyway. I think it was just for some sort of closure.

He wasn’t a religious man. My daddy’s family was very religious. They were a strict Pentecostal religion that followed the scripture of, “Spare the rod, spoil the child.”

They had to pick their own switch off the tree to be beaten with. It was a tough upbringing. They were extremely poor too. So, he was kind of turned off by the church. I understood that and never judged him.

I prayed for him but didn’t cast any judgment on him. Yeah, what favors did they do him by saving his life? But at the same time, hospitals are doing their job by preventing a suicide. Gets complicated, doesn’t it?
Midkid58 Nov 2019
Having just finished with chemotherapy for lymphoma--my mindset has changed TREMENDOUSLY.

I don't even know yet if I am cured. Remission, whatever. I will find out in a few weeks after some more testing.

I did ask my oncologist if this was probably what was going to 'get me' and he said
'nobody knows, of course, but it's likely. You probably won't live to 90 like your mother. You can probably expect 20 years.' Shoot, I'm, 63, that's just fine with me!

This was good news. I am one and done with cancer. This comes back and I am not going to treat it. Seeing how awful it is, living it and being so very alone in the battle--not worth it. I'm am not afraid of death. I am terrified of living past my sell by date and being a burden, as both my mother and MIL are.
NeedHelpWithMom Nov 2019
Mid,

Yes, with you it isn’t just speculation or wondering like we all do after about our own mortality seeing people age in our families. You have faced your own trials. I can’t imagine what you are going through.

I continue to pray for complete healing for you. Hugs!
NYDaughterInLaw Nov 2019
Don't get sick or die quickly.

againx100 Nov 2019
I was already taking care of myself and trying to be better than the generations before me. But taking care of my mom has cemented these ideas to the Nth degree. She has taught me what NOT to do.

So I will not become very overweight.
I will not let little problems go because they can become big problems.
I will stay active so that I can remain mobile and productive, etc.
I will not move in with my daughter until it is VERY necessary.
I will keep a social life so as not to be overly dependent on my family to entertain me.

I would also like to leave this life in my sleep. HAHA. I wonder what the very low % of people this happens to??
XenaJada Nov 2019
To die in one's sleep in one's own home is a major gift from God, IMO.
TNtechie Nov 2019
I'm not sure care giving impacted my view of aging and death, but maybe that's because care giving has always been a part of my life. As a child, I saw my grandfather helping his aunts with grocery shopping and transportation while his cousin took care of the yard and heavy gardening and they both kept the house maintenance up. As a young adult, I helped my mother care for my grandparents. In my late 30s, I started supporting Mom caring for my father with vascular dementia. I saw grandparents and great aunt/uncles and some neighbors age and die, mostly from old age and most without any dementia even as they lived into their late 80s and 90s. I came to view the sudden heart attack as a good way to go, especially after a 93 year old neighbor collapsed while walking back up a steep driveway from his barn after caring for his horses. I value being able to live the life you choose, independently, to the day you die. My biggest fear is a stroke leaving me incapacitated followed by years spent in a NH. Cancer isn't as big a fear because I know I could use my asthma to exit this life before the cancer would get me.

I'm retired on disability with severe asthma and some mobility issues from spinal stenosis and osteoarthritis, mostly just limits. I can do just about anything I want for few minutes to an hour or so, then I need to put my feet up and rest my back before going again. The biggest impact care giving has had on me is probably in planning and saving. Raised by my mother to manage household expenses frugally, I continue to live below my means so I can save for my senior "alone" years. None of my relatives were wealthy, but I was able to observe having some "extra" money above basic living expenses, sometimes just a few hundred a month, provided many more options.

I plan to age in place as long as I can do most ADLs and already have a single level home with ADA baths, ramps, lever door handles, lower kitchen drawer cabinets, security system with panic button, etc. I exercise "load management" and use the limited exertion my joints and back tolerate doing stuff I want to be doing and hire weekly housekeeping help for the rest. I live next door to my nephew and he (or his son) mows my yard when he mows his own. Today it's snowing and a grand-nephew showed up (without any prompting) at 7:00a this morning with mom's newspaper to clear my ramp, request I cook his favorite breakfast, and watch a movie on my streaming service. I will most likely be able to remain in this home during the "watch over" phase of aging. If not, I might try out the ranch condo senior living community where my aunt lived.

As long as in home care is less expensive than AL and/or I only need limited help, I'm going to spend my money to remain in the home. When I need daily help (dressing, cooking or medication management) or it's difficult to get out to my car, I'm moving to an AL where I hopefully remain until death.

Once my care giving period is over, I'm going to travel a bit as my own health allows. My asthma makes hotel rooms problematical beyond a few days so I'm thinking of purchasing an RV and hitting the roads for a few months each year to visit historic sites, national parks, and some extended family along the way. RV campsite rentals (and cooking in the RV) are a lot cheaper than hotels and restaurant meals too. I've got my eye on a couple of 55+ campgrounds with wonderful views of mountains and lakes where I might stay a couple of weeks just enjoying the scenery while I read some good books and occasionally find someone to join me for a good meal.
cherokeegrrl54 Nov 2019
Your plans sure sound good to my ears!!!!
cwillie Nov 2019
I have to admit I roll my eyes whenever I read comments about letting nature take it's course when somebody reaches 75, while I thought that seemed old when I was in my 30's ... not so much any more. My mom had a reasonably good QOL until after she was 90, and perhaps a little MORE medical intervention in her 70's would have treated the conditions that lead to her eventual vascular dementia.

I know I have no one who can step up in the ways I did for my mom and none of the younger relatives are in a good position to act as my healthcare advocate. Since my recent health problems I've heard crickets from the person who was number 1 on my list of possibilities 😕

As for choosing physician assisted death - they don't do that unless you are suffering from a "grievous and irremediable condition", and not at all for those who don't have the capacity to ask for it themselves.
NeedHelpWithMom Nov 2019
I agree, cwille. Nowadays, 75 doesn’t seem that old. Oh gosh, it did seem ancient when we were kids though.
AnnReid Nov 2019
I’ve spent the last 3+ years ignoring and neglecting my own health to care for two dearly loved dependent “others”.

Suddenly and unexpectedly I realized that part of my ceaseless and unrelenting anxiety has been caused in part by my own neglect, and I took care of some standard medical tests, cleaned up my eating, bought myself a light box, and learned to my delight that my health is about as good as it was before I stopped taking care of it.

Although I had started serious study of my musical instrument in January of this year, my new found resilience has given me a new lease on playing, which in turn has brought me social contacts, a more pleasant day to day structure, and a stronger desire to live until I die, knowing that music can help me do that.

I’ve already impressed often, both conversationally AND LEGALLY on my children that I refuse to have them burdened by my care, and that I will haunt them from Beyond if they get maudlin about my circumstances, so having that covered, I’ll have to leave that to them to honor.

In the meantime, I’m loving what Tuba Life is giving me while continuing to keep an inch or two in front of the demands that caregiving continues to impose upon my time day to day.
NeedHelpWithMom Nov 2019
I love your relationship with music! It truly has been life changing for you. It brings me joy to see this transformation through music in your life.

Music is joyful, therapeutic and healing in so many ways, isn’t it?

Here in New Orleans there is an organization where volunteer musicians visit those in hospitals and the reduction of pain experienced has been remarkable.

People used to doubt yoga for it’s healing purposes. Now people praise yoga. The same situation exists with music. It is being well praised by many hospital patients in our area. God bless the musicians that volunteer for hospital patients, nursing homes and just in general in the community.
Elle1970 Nov 2019
Sometimes I wonder if God meant us to live this long. People have so many years granted to them now through medication and those are not necessarily good years. Christian Scientists do not allow as much medical intervention as is available in the mainstream. They are considered barbaric for it but is prolonging people's pain and confusion any less barbaric? My father says that three score and 10 (70) are the years God allots us in the bible so anything else is a bonus. But is it really a bonus if you are bedbound or in pain? However some septuagenarians are living active enjoyable lives and on the other hand caring for partners/family. Everyone's situation is different.

I read a newspaper article some years ago written by a humanities professor who has decided to stop all medication at age 75 and let nature take its course rather than having his life artificially prolonged. If he is diagnosed with a disease such as Parkinsons or Alzhemimers he will go to a country where euthanasia is legal. Many people here are God fearing but when confusion or chronic disease/disability sets in those who are Humanist might consider going to Colorado, Oregon or Dignitas in Switzerland to ensure an easier end to their lives. A centenarian Australian professor made this decision with the full support of his family. No matter what we say now none of us knows how we will deal with personal ageing (past 75) and death.
CGN8485 Nov 2019
Hi Elle,
I feel the same way. I believe my mother is only alive because of medication. She is nearly deaf, blind, can barely move, eat, etc. How is this living?

I have taken out a long-term care policy on myself and made my wishes known to my children that I do not want life-support of any kind when I reach the "helpless" stage of life. I also know that Amsterdam has euthanasia clinics and if I'm diagnosed with Alzheimer's, etc., I plan to have myself put to sleep.

I realize some people think this is cold but anyone who's ever watched someone die slowly may have a different point of view.
earlybird Nov 2019
I would like die in my sleep too. I plan on staying in my own home until I am unable to care for myself. When the time comes and I no longer can care for myself I want to go to a decent facility for my remaining life. I have a strong belief in God and know he will provide for me. I try to take one day at a time. I do plan on getting everything in order. I already have a Living Will, appointed a POA and will work on a Trust/Will eventually. I do not want to depend on my family for my care. They have done enough! I already had a discussion with them, and told them I really appreciate all the care they are providing for my dear mother, and that is the greatest gift they can give our mother / grandmother and me. I do not fear death, I am well prepared, and if I died tomorrow I know I will be in a better place. Life can be so difficult at times, I would welcome the peace and quiet that death provides. Thank you caregivers for your expert advice on many subjects. This is one of the best and informative sites I have seen. We are very fortunate to have such unselfish people just wanting to help our fellow caregivers..
NeedHelpWithMom Nov 2019
Faith can bring enormous comfort. I am a believer but I find my faith waivers at times. I wonder how many others go through this experience. I envy people who seem to have extremely strong faith.

I do think it is normal for doubt to creep in when I realize that even the greatest of prophets questioned God during trials in their lives. Of course they experienced sadness as well when they were faced with trials and tribulations.

I suppose that is why I don’t buy the ‘Pollyanna’ attitude. Just doesn’t seem authentic to me.

What’s your take, earlybird?
Ahmijoy Nov 2019
IMHO, dwelling on ***what might happen*** to me in the future would be stressful and depressing. Like just about everyone else, I have diseases and conditions in my family that could be genetic. I know that my son would step up and help out. He already has. What worries me more than dwelling on my ultimate demise from “whatever” is who will care for my husband. Again...my son.
NeedHelpWithMom Nov 2019
Very true. We shouldn’t dwell. But my mind wonders. I would drive a philosopher nuts! Hahaha. I do seem to have a million questions at times or just ponder different situations.
PreferNotToSay Nov 2019
I think a lot about AfterLife, Heaven, Hell, the Transience of Life, Judgement Day and how Foolishly people WASTE their entire lives fighting and being mean. I now APPRECIATE prayer million times more than I ever did. When I am DESPERATE at 3am, only GOD is there to help. Hopefully in my old age, there will be low-cost ROBOTS to help with these old-age problems. I don't have children to take care of me. The time place and circumstances of our deaths was pre-determined before we were born by Almighty God. Dying is the start of a new life. Here is link to Robot.

https://seniorshelpingseniorsnh.com/elderly-home-caregivers/stevie-the-robot-helps-seniors
NeedHelpWithMom Nov 2019
Me too! I don’t think I think about it consciously all the time, something, somewhere triggers my thoughts. I get what you are saying.
anonymous158299 Nov 2019
it has scared the hell out of me . i dont have someone to designate as poa who will honor my directives .
i thought i was a halfassed CG . in hindsight my mother had a controlled situation that i can only envy .
NeedHelpWithMom Nov 2019
Captain,

I think it is kind of a part of aging, to think about these things. We would have never thought about it this deeply as a kid.

No wait, I did have a fear of death as a young girl. Honestly, I feel that came from my parents taking me to a lot of wakes and funerals. My great aunt told me the deceased was ‘only sleeping.’ Screwed up kids telling them that. They didn’t know any better back then.

Plus the horror films I saw as a young girl. I was the only girl in my family. I was outnumbered and my brothers always wanted to see every scary movie their was. I got drug along. My opinion didn’t count for anything.

Yeah, when I got older I liked scary movies but as a very young child they truly terrified me. I had countless nightmares and then was continuously ridiculed for being scared.

Oh well, life of being the only girl and parents who just didn’t realize how much things effected me
so much.

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