How has caregiving changed your approach to aging?

My mom is still alive but I don't expect her to live beyond a few months. I have been dealing and caring for her for over 10 years, and she is at the very last stage of Alzheimer's disease. She will be 90 in August. IT's a terrible struggle to get her up and keep moving so I can put her on the toilet. She cannot even control her bowels. That in itself takes a half day to deal with. If she stayed in bed she would be bedridden and her care would be extremely difficult and I have no help. It takes over an hour to feed her, and keeping her hydrated (drinking water) in itself is a full time job. I pray I never grow that old. That is why I voted for Donald Trump -- for nuclear war. This is no lie either. Everyday I pray for WW3.

Everyday I dread going to bed because I have to wake up and deal with her care, and I often only sleep a few hours because of the stress. Every single moment I care for her is extremely stressful not knowing she will fall because she needs maximum help. My life is terrible misery, but I cannot imagine life without mom. You see I never moved away from home. I always been with mom, so how can I cope with her loss. I guess I'm going to have to. Death comes when it comes.

What has changed for me is after observing my father's disposition, I want to change how I approach and look at life and people. To be more forgiving, generous, compassionate and positive. His lack of this has taught me lessons. Life is what we choose to make it.
My standard saying is "we’re living too long". There’s no need to live into our 90’s and 100’s. Truly! I plan to have enough pills to transition from this world if my life has no quality. I don’t want to just exist waiting for the end to come.
I have longevity in my genes so who knows and I’m pretty healthy. I just want to have joy and gratitude in my life. Dying from dementia and waiting until it takes you is the pits and no way to live.

I have watched 3 family members die piece by piece. When it's my turn I want to have someone intervene and help me die. I would much rather have quality of life rather than dying slowly.

It has caused me to live more for the now. In my 50s but no longer saving money for retirement. I am not going to trade-off the years/money in my 50s to be sitting on a pile of money in my 80s. My parents worked and saved but their quality of life ended around age 69 and it's been nothing but unhappy existence for 10+ years now.

Stay strong: Work out with weights to help avoid balance and walking issues. What quality of life is there once you rely on a walker or are taking regular falls and breaking bones?

Have a good attitude: You are gonna get older, no way around it. Stay vital and active, engaged, positive, learning, etc. Don't constantly say "I am too old"...

I know people in their mid-80s who still have a good quality of life. I know people in their 60s with bad attitudes, lack of motivation, and just waiting to die. You do have some choices.

I allowed my DH to pass when it became obvious his body was starting to shut down. I have no one to tend to me if needed - has it changed my outlook on aging?

Yes, I've decided to take the best care of myself possible. I lost 60 lbs and am getting regular daily exercise and eating a lot less processed foods, going healthier.

I'm 67 and on no medications other than Flonase (at the moment) and I'm determined that when I'm 87, I will know who I am and where I live. When my body has had enough, I will not take "heroic measures" to be here longer, to me that is not living.

I think part of the problem with aging these days is that too many of us don't have a solid family support structure... in the "old days" the elderly would move in with their large families and be cared for by many people who truly cared about them (think Amish). The difficult work- emotional and physical- was shared responsibility done with love. The new norm, however, as families have grown smaller and become more decentralized across the world, is that our aging loved ones are now placed in facilities to be cared for by overworked, underpaid, coldly disinterested staff.

It's often so difficult to care for a family member on your own- people work and have enough stress in their lives and are suddenly in the position of being sole caregivers for a parent with declining abilities- this forum is riddled with stories of people desperate for help from family that just isn't there.

We live longer but at what quality of life? Who wants to end their days as a burden on their children?

Even though I am only 60 now, after being a caregiver to my husband for 4 years as he slowly wasted away from Pancreatic Cancer and died at home in hospice care. I am now a firm believer in Euthanasia (medically assisted suicide) which I believe will be legal in every state within 20 years. Some insurance policies will even cover you for that after you have had the policy 2 years so that way it can pay something to your heirs or even just for your cremation/burial.
You can also borrow against a Universal life policy to help pay for end of life care. So besides having a medical POA, Durable POA and end of life directives and cremation paid for in advance. I plan on Euthanasia after I sign my DNR. They use the same drugs as hospice just in a more concentrated form. After watching hospice - to me it looked like a painfully slow form of assisted suicide. Join the organization Death with Dignity if you want to have the choice of Euthanasia someday in your state.

Yes, it has definitely changed my outlook on aging. I don't know if I'm the right person to answer this question. Every few days I say to myself "I'm not going out this way". At this point I don't know if that means refusing treatment in the future or joining the hemlock society. I am 65, healthy right now & see to my 97 yr old Aunts needs. She has been in a nursing home for a year now (blind, unable to walk, dementia). I am blessed to have my cousin help & her late husbands nieces have pitched in for the past 3 years. When my time comes I won't have that support system. But I do know your loved one appreciates you being there for her. Each of us must find our own path.

Don't have daughter that will do for me what I am doing for Mom.
FIRST clear sign of mental imparement, will find exit.

I’m trying to be nothing like my mother. I’m boxing, spinning, yoga, Pilates, anything to run away from Parkinson’s (both parents have it). But should it catch me I feel much better equipped to fight it!!!!! I want to live a long HEALTHY life!!!!!
I’m being silly. Dancing like no one is watching. Forcing myself to be more extroverted. ENJOYING LIFE!!!!!!

PLease do not your personal experience with MIL color your days...what's that expression...that worrying about tomorrow saps the joy out of today....Bad things happen, but who knows what precipitated all of your MIL's issues. And just because that happened to her, doesn't mean similar will happen to you. Working in the business it can get pretty depressing...but I remind myself that this IS the business and I am only going to see those in need. That doesn't mean it will happen to me.

I want to remain at home until the day I pass. Of that I'm sure. So my goals based on my observations and experiences taking care of my 96 year old mother with dementia and 102 year old deaf but extremely active and engaged father (who has been volunteering over 25 years with meals on wheels), as well as their experiences interacting with the medical system, is to make sure that we create regulations that respect our autonomy and treat us respectfully with help in our homes if we desire or need it but with people trained and of the highest quality, background checked in a system that constantly updates and with wages that allow THEM to live independently. Stop worrying and enjoy life and do what you can to make the future better!

I am caring for my way fe with mild dementia....diagnosis was about a year and a half ago....
i am 66....retired and my wife is 71...
our daughter is about 1500 miles away...
My wife is at a stage where I provide
assisted living...she can’t drive....etc.
I am a in excellent health (as is my Dad at 96)....and have been an active runner since my early 40’s...
Care giving brought me to a sudden awakening recently...
If something happens to me...what will my wife do?
She is not self sufficient anymore more.....my daughter is not in a position to help...and besides..it isn’t her strong suite...
So, being a care giver...has caused me to have an awakening...
I need to prepare all our legal paperwork...and assign a legal representative to handle our affairs (if I go first) and for me (if my wife goes first)...
I know that I donot want to “just hang on as end of life approaches)...

Caring for my husband for three years and watching him decline into a horrible form of dementia has taken the joy out of what I previously felt were the so-called "golden years". I am now financially unable to do any of the things I had "programmed" into my senior years, as our savings are gone and my income was cut in half. I watch every gallon of gas, dread the last two weeks of every month as my bank account dwindles, and am terrified that as my own health issues, which were exacerbated by the caregiving, are becoming more and more difficult to manage, that my last days will be like his. I am grateful for kindnesses shown by friends and family and I truly do find simple joys in life, but I pray that I do not live to become a burden on my family, because a burden it would definitely be. They are loving, but do not have the financial resources to care for me when I can no longer care for myself. The fear of putting them through what I went through with my husband is so intense, that I do NOT want to live that way.

I have absolutely thought about my aging process. I have one son whom I am certain would be there for me, but I have no intention of putting him through what I'm going through as 24/7 caregiver for my mother. At the first sign of mental decline, I'll put a plan in place for an exit on my terms. No way do I want to live like my mother is living now.

Yes but unfortunately we have no say as to when we pass away. I am 85 and on a minimum of 21 pills a day, but in order for me to die it would take more than just stop taking the pills. I would have to actually kill myself. My religious beliefs would not allow me to do that. Even with all those pills, my quality of life is not very good. I would not choose to live this way because I am in constant pain. But I have no choice. Apparently I did not take very good care of myself when I was younger, so I developed arthritis in almost every major joint. I have had one total hip replacement and two stem cell treatments for both knees( very expensive) Now my back and one shoulder need something, they are not going to get because I would run out of money. I have diabetes which has given me kidney disease, and neuropathy in both legs. I have to use a walker to get around but I still drive and get around and until lately was taking care of my 88 year old brother and his dog. Sadly he and his dog both passed within a week of each other last Nov. Now I am alone and still plugging. As I stated earlier we have no choice, God makes that decision. You probably did not want to hear from someone like me but when you ask, thats what you get.

I do and will continue to accept life as it comes...at 83, I have some ailments, but just accept it..I just trust that God knows what he is doing.

Grace + Peace,

Bob

Read this somewhere recently and love it.
"It's not the years in your life, it's the life in your years"
I feel your expectations of "quality" change as the years go by. I feel it's God's way of adjusting to the ageing process.
I just hope I don't become a burden to my children and God takes me before hand.

Care giving has not changed my approach to aging at all. Having watched my Grandmother in a NH for 18 years, I had already decided I will not be staying around that long or in that position. I have made arrangements that when I choose that life quality has deteriorated to a level I am no longer content with then I will leave. Caring for my mother, who has an annex attached to our house, so who has been able to retain some independence but who has what to me would be unacceptable physical problems and some decline in cognitive function - not dementia, just old age - has simply re-inforced my views we live too long and in unpleasant circumstances and when I reach that I'm off.

I have changed my approach to aging in that I've become more vigilant in setting in the habits today that I want to continue with I'm much older. I've found that when we are old, we tend to continue with the habits that we have developed over the years.

For example, my 87-year-old FIL doesn't get enough liquids into his diet. I have been able to get him to increase his liquid intake slightly, but it's still far below what he should be getting. He's just not used to drinking water by itself. Currently, his main sources of liquid are milk, coffee, decaf coffee, wine, and melons, with soup thrown into the mix every once in awhile. (He's not big on soup.) It's not enough, and it would be good if he could just drink water.

When I was 20, I felt that 80 was a good long life with plenty of time to accomplish anything. Now that I am 64, I wonder where the years went. My father was in good health but dementia took his mind and body control. My mother and Aunt were sharp to the end but physical ailments weakened their bodies. We don't really know until we get there what we are going to have to face. I believe there is some irony to it as we often lose that ability we relied on the most during our lives. Yes, I think this intentional. I do feel the medical community just props up seniors and there is much that needs to be done to give them the emotional/mental support and stability they really need as they (we) all age.

I'm watching my Father lose his memories, his abilities every day. He has mod/severe ALZ, HP, Afib, Stage 3 kidney failure, hearing loss... I once thought retirement would be fun - I've seen other relatives enjoy it. But now, the ALZ terrifies me. I have another relative who had a mild stage, but passed before getting worse. This makes me a higher risk and switching to better eating (MIND Diet) can only do so much in delaying if I am a subject. The fear of losing myself and putting such a burden on to my kids is very disheartening. Has it crossed my mind I hope I'm gone before 75 yrs? Yes. I'm researching like crazy, but can the "golden years" scare the snot out of you? Oh yes. I wish I could be more optimistic, but, if you have a high risk, it's tough.

The two main things that I learned is that my home must be aging friendly. That means room for a walker or rollator and single level living including laundry facilities, and this home should be in a community that has services for the aging. The other is that my husband and I must have all our paperwork/finances in good shape so that if and when one of our children must intervene that aspect won't be an added stress to an already difficult situation. That paperwork should include a document that expresses my wishes about end of life care. Sometimes, everything comes together in a better way, for example, the 90 year old who spent almost a year traveling with her daughter in an RV instead of choosing aggressive cancer treatment. But sometimes, the process is more muddied and the line marking desire for treatment and desire for comfort only isn't clear. Sadly, we don't have a crystal ball. Which is why the conversations surrounding life, illness, and death must be had despite how uncomfortable these topics make us feel. The best thing we can have is an advocate when we can no longer advocate for ourselves. These conversations will hopefully make it a more kind experience for our loved ones who may be expected to make these difficult decisions for you.

I totally agree with you. It’s definitely made you think of aging and how it’s not kind to us. My mother used to be independent smart well travelled opiniâtres and now she has dementia and has a stroke which worsened her dementia. Doesn’t remember much. Doesn’t ask about her residence or anything much at all. We just moved her to an AL almost two months ago and I am noticing how much neglect has gone on so far. It breaks my heart because we could not take care of her anymore. So it definitely has made me think about end of life.

I've learned to take better care of myself with diet and exercise, plus socialize and keep my mind active by playing mind games such as crossword puzzles and reading.

I was a caretaker four times in my life: For my father, my mother, my husband and a friend. It was extremely depressing and very difficult and it took its toll on me. I feel sorry for anyone who is mentally or physically ill and have always done all I could do to help them. But, I learned the hard way, far too late, when their behavior and their needs are of such a nature that it is beginning to destroy me physically, emotionally, financially, etc., then I have to stop and think. I did not make them that way and I cannot fix them. People need to live their own lives while they still have a chance - life is too short. Some can be caretakers and others are not suited for it for many different reasons. Then we must decide - do we continue doing what we are doing or do we place them where they can be cared for and are safe. Personally, I think the aging process is among the most ugly and heartbreaking things that can happen to a human. I am all for humane euthanasia, provided the decision was made while the person was fully functioning and alert and informed, and this choice is periodically updated. But in our society, too many people think that is terrible. I became disabled eleven years ago and can't walk - I have lost all of my self-respect and self-esteem and hate myself and can't understand why I am still here. However, to give credit where it is due, I will be 86 but because of my love of animals, I am continuing my work for 50 years for animal welfare on a local to an international level; I am still a Power of Attorney to two people for l4 years; I just finished six years of college courses; I handle all of my own affairs; have many hobbies I love; I still drive and go out to eat by myself. But I am a solitary fish out of water. Most old people do NOT live like like I do - as I did in my 30's but I can't walk and never will again. So, yes, aging to me is sickening and disgusting and I stand firm each of us should decide when we want to give up and be allowed to do so. If I did not do the things I do (not typical for an old person like me), I would have preferred to go to the big beyond when I first became disabled and could no longer walk. I entered hell that day even though I am very active - but I have to be here for my dear kitty whom I love very much.

Oh yes. I am learning lots of lessons on what NOT to do as I age.

I will not:
*Ignore my health issues and let them become debilitating
*Let myself become immobile - without a huge fight!
*Repeat the same darn stories OVER and OVER, even when told I have already told it - save my children's sanity

Metoo111,

I worry about what will happen to me all the time since taking care of mom the last 12 years (and taking care of kids before that), without pay does not provide any resources for my old age.

I, too, hope to remain active and productive or not be around at all. I do want to watch my kids and their kids continue to grow, But not from a wheel chair.

The trouble is, my health alarms are never something I can fix quickly.
My recent labs show a decline in kidney function and explains a lot of discomfort I have. The info I’m finding online says to eat the exact opposite of what I’ve been focusing on in our diet!

And, here’s the real crazy thing: what I was reading online sounded a lot like some symptoms mom has that her doctor has never addressed for her. I pulled her lab reports and her kidneys have not been functioning well for years! As far back as 2009 she had red flags on her reports but I didn’t know what they meant.

(I think her doctor has been expecting her to up and die for years now and holds back on some treatments. If he was correct I would applaud him, since she’s still kicking, I wish he’d make sure she’s more comfortable. )

Neither of our doctors gave us any advice except to adjust meds and drink more water. The dietary changes I’ve read about online will be a slow process and may be too late to do much good.

My biggest concern about this is that it effects my energy level and defeats my goal to remain active. I still have mom to care for! I need to be healthy and feel good to be any use to her. That much is certain.

If I age like my mom, she is 93 and still has her mental faculties and physically is mostly weak, I have many more years to look forward to. I don’t want to spend them feeling like a slug.

Charlotte

I have been taking care of my now 90 year old mother for 13 years now. She has so many things wrong with her it is unbelievable she is still alive. It has become exhausting and caused me to neglect my own health. She thinks I owe her every spare moment for her needs and entertainment because she is my "mother". It is just easier to do everything she says then to have her sharp remarks and vicious scenes. My husband has also been sucked into this drama and now that he has been diagnosed with cancer I wonder if she will outlive us all! It is a a total guilt trip of the highest order. I am a nurse so it is expected of me to care for her at home and I guess I just do a really good job.......(Sheesh)

Ive felt the same but all the responses about 'I'll never do this to my kid's and 'I'll kill myself it I get Dementia' are almost funny - my mom said the same thing! Now she's doing that to ME. As my cuz said 'by the time they get that way they won't even know it' (30 yrs ago!) It is an impossible situation. Anyone seen The Family that Preys? I hope I can catch it early like kathy bates! Of course I have no kids so no one to re-burden lol.

Absolutely, how my living longer will/could affect my children and their lives.
I'm exhausted after only 14 months having mom living with me.
I thought I was up to the task, a complete new appreciation of caregiving has been defined!