How has caregiving changed your approach to aging?

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How has caregiving changed your approach to aging?

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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.

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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?

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Well, the lack of a large, supportive family plus the fact that some are living 20 or more years beyond their ability to live independently. It seems that some elders are living in a state of dependency a lot longer than the 17-18 years they spent raising a child. It didn't used to be that way.

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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.

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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.

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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.

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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.

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I agree. I have decided that if I get a diagnosis of Alzheimer’s, I am immediately going to Switzerland to have assisted suicide. Any other disease I will cope with it, but I won’t visit Alzheimer’s on my family and have them have to watch who I am disappear. Assisted suicide here in US, doesn’t accept people with dementia. The worst of all diseases. I also do not want to hold on to this life taking every measure possible.

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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.

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My husband and I live in Switzerland for the past 5 yrs coming here to help his separated parents. As of 4 months ago his father “had” to go to assisted living/nursing home. This is a very humane society with people choosing what to do with their failing life in old age. It’s called “exit” and you pay $45 a year to belong. You must be in it 3 yrs minimum and then based on your health conditions, when they are really bad, you can choose to die by injection or pill and you must administer (with assistance) either method. Being a believer as well as a highly doctrinated Catholic, I thought I would never choose such a way, but after seeing his mother deteriorate and be unable to “talk” for 4 years due to a stroke, watching her physically shrink to the size of a 10 yr old, and his father in excruciating chronic pain, I would choose exit. For you, my dear, you must get a home health care aide, call your “Office on Aging” in your town or city. They offer services especially if finances are an issue. If they aren’t you must take care of your self, you must have a break before you break. Then she wouldn’t even have “you” to care for her. There is help out there.
God bless you both.

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A cocktail of drugs has kept my mother alive in a nursing home for more than a year. It's sad...for her. I think about her situation all the time -- specifically as it relates to my growing old. I see a counselor to talk these things through. But, if I could change one thing about growing old, I would like to control the time of my death. Period.

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As caregivers, we all see the nasty side of growing old. I have been caring for my husband who has dementia for 5 yrs. If I ever have dementia and still know what’s going on, I will commit suicide before it is too late. I would not want to burden anyone with this disease.

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I been caring for my mom for over 10 years. She is maximum care and I sometimes get injured because she is so heavy and it's like she expects me to carry her which I can't. Mom does not even know how to move her bowels. I often put her on the toilet and she forgets how to urinate so she doesn't until her bladder gets too full and she goes in her diapers. If she stools in her diapers she can get a urinary tract infection very easily so I am under constant stress and been doing that for YEARS and YEARS.

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I am the caregiver for my 88 year old mother . She had a stroke in December 2018. She has been diagnosed with a brain tumor . At that time I thought she was going to pass way any moment . We had her the best care in Houston . She went to rehab to gain strength from the stroke . Her short term memory was literally gone which was a huge concern . I placed her in a memory care facility . She was there for 22 days as i watched her become more and more depressed . She played BINGO and won every game probably because she was the only one alert there . I took her out and brought her to my home . Here she has thrived . She walks without her walker , she reads and does the crossword puzzles . She is up every morning with a smile on her face . ....... so you ask me how I feel about aging ........ it is part of life . It is a part of the circle of life . What I think has made the aging process scary for many of the fact that there are few services for the aging that do not deplete the finances . I think environment and the way seniors are treated is everything . I only hope and pray that I am. ca red for the way that I am caring for my mother .

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It is dreaded. I always looked younger than I was before all this. I feel I have aged 20 years after going through my mom's demise and now have MIL to deal with and husband's heart condition. If he goes first I am in trouble. Having advance directives is good....if only someone would be there to carry out your wishes.

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Definitely have a living will with your medical directives. I hear recently that you can also add something that if you cannot feed yourself, not to be fed. This may only be legal in some states. It is also possible to have directives not to be sent to the hospital unless it is a medical emergency or extreme pain. This may apply only at the hospice period or when in skilled nursing care. It's best to consult with a lawyer.

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Look for a document called a POLST signed like a DNR but it more detailed. You can check to see if it is legal in your state but pretty sure each state has something like it.
POLST stands for Physicians Order for Life Sustaining Treatment.

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Hello:

I have had the privilege and heartbreak of watching and assisting several hundred people with ongoing caregiver needs die over the decades, including my mother. I certainly would rather pass away more quickly. When I can no longer participate in life, I am ready to go. I had a recent client who passed away unexpectedly. He was just about to interview someone to help his wife with caregiving. He was still somewhat vibrant, had children and grandchildren to live for. but I was not sad when I had heard he had died unexpectedly. A long slow decline requiring more and more help, with the burden increasing, requiring a loved- one to oversee the care. Too much for too many. I, too, would rather die earlier than later. The financial and emotional burden and challenges can be heart breaking.

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Thank you for being an angel to all those families!

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Yes. My husband and I have discussed this at length and agree that we both value quality over quantity having seen a number of older family members suffer painful drawn out deaths extended (arguably unnecessarily) by medical intervention. For 2 in particular it was against what they would have wanted but had no mechanism to express, the time for doing so having passed some years previously. Towards the end pain relief did very little for either, it was awful.

We've made provision for our older years and have clearly expressed, in written and witnessed form, that neither of us want our lives to be dragged out by medical intervention when we are old. This may sound quite brutal, but I personally would rather have some idea and control over the time I go, because I would like to know my affairs are tidy and not leave that dreadful job for someone else.

It seems that extending life at all costs has become the driving principle, which I personally think is wrong, but I appreciate not everyone shares this view.

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ACaringDaughter, I only tried Acupuncture once. I had an diagnosed spinal fracture. The practitioner didn't understand or believe me about my pain level. The experience was so bad that I just can't bring myself to try it again.

I am wondering when it is appropriate to post our DNR and POLST on the refrigerator (insert smiley face). I think it should be soon.

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I would also provide your DNR (etc.) to your primary care physician for his/her records.

I hope you find relief from from your pain. In my experience, increased pain causes high blood pressure.

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It has changed me because I now see the need to make your care plan in advance of actually needing it. I am learning from the mistake my parents made by thinking all they needed as they aged was to have their Will. They only thought about what happened when they died and never about needing outside assistance with daily living for several years. They always said if they couldn't take care of themselves they would find a boat and just paddle out to sea, but that is not an actual plan and they are exactly where they never wanted to be.

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It definitely has made me a different person. I never used to fear growing old and now I am terrified. With Alzheimer's/Dementia on both sides of my family, I feel like I'm doomed to suffer from it too. Every time I forget something or can't come up with a word I want to say, I'm worried that it is starting. My grandfather had it and I know his maternal grandfather did. His mother died in her 50s of heart disease, so we'll never know if she would have had it. My mother now has it. My dad's sister and brother had it and I suspect Dad may have been starting with it when he died from kidney cancer.

I've told my kids that I flatly refuse to be a burden to them. I will not have them groaning at the 4th visit to the ER in a month, helping clean me up after an "accident," looking for things I misplaced and insist were stolen, trying to persuade me that I have not been kidnapped or transported to another planet, etc.

My stepfather died at age 66. He had a massive heart attack while chopping wood and died instantly. I was always comforted by the fact that he went while doing what he loved, where he was happy, and never had to be confined to bed or hooked up to tubes and machines. God willing, when it is my time, I would much rather go like that.

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I feel the same way!!

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My mom, brother and I watched my dad suffer through chemo, radiation, steroid side effects, etc. in 1979. He was only 48 when he died and it was a long, agonizing death and very hard physically and no emotionally on my Mom, who had to keep working full time. This was before Hospice and did she kept my dad at home until the last week or so. It was then that Mom and I swore we would never put ourselves through that. Fast-forward to 2011. My mom had moved to be near me (brother was AOL since about age 22). I noticed her not feeling well that December and texted my brother that I thought something was wrong. Mom insisted it was a new coffee she bought, giving her stomach aches. We endured about a month of tests after her symptoms became worse and the doctor (also my own doctor) finally sent her for an ultrasound the end of January. Metastatic cancer in the abdomen and spreading. She went right from the hospital to a nursing home where she died about 4 weeks later. Her/my doctor and I both believe she knew she was sick for a long time and chose not to do anything about it. She had a pretty good death...she was never in much pain or discomfort and was fairly lucid to the end. She died one night while I was home sleeping as we did not realize death was imminent that night. Thankfully, my kids, brother and niece were all there with her the evening she died, and she talked with my other niece and nephew on the phone. My mom would have hated going through surgeries, chemo, radiation, etc. She was 79 when she died. I believe I will choose the same route if this happens to me, unless there is a very good chance of beating the cancer.

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I promise to not talk about my bowels and surgeries.

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Hooray! “Be the change you want to see in the world.” Right??!? 👍🏼😃

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@MaryKathleen, that is awesome you are exercising 3x a week!! That's something about your mom's watch.
@Tiger55, I do need to do exactly that- thank you. We all laugh about it at my house, but I realize that my family might feel a bit differently if actually faced with the situation.

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My grandfather had one of those watches, and the same thing happened. My father (his SIL) figured out what was going on, and mentioned that he's obviously not even moving enough to keep his watch going!

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I purchased Long Term Care Insurance.
Paying the bill once a year hurts a bit but knowing I can age into my house and stay here until the end is a relief.
I also don't do "stupid" stuff. If I have to change the battery in the smoke detector..or do anything involving a ladder I wait until a friend comes over so if I fall there is someone to call 911 (and prevent the dogs from eating my face while I lie on the floor for 3 days before someone decides to check on me){{insert laughter here}}
I stay active (other than ladders)
I stay involved
I volunteer
I hope I stay healthy but I do plan to do a medically assisted suicide IF I am ever diagnosed with dementia. I am not going to put anyone through what I went through caring for my Husband.
I do look forward to each day and am thankful for what I have. And I greet each day with optimism

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Quality over quantity always IMO 🤷🏼‍♀️

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I have toured many Independent homes in my area as we are moving my step father and his wife here as it is not working out having them in AZ and my brother & I here. I told my brother that I will move in one of these places when I can no longer function properly. Fortunately, I can afford to place myself in a 5* place with a step up program, when needed to AL or Memory Care. We are placing them in a beautiful home, nice apartment, lots of amenities, they can also afford the monthly fee, they will now start spending down.

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Looking at my own aging process, I learned from my mom's experience that senior care facilities are better than being alone or expecting family to take care of our needs. Mom actually did much better after moving into assisted living. She made new friends delighted in the meals that were prepared and served in a lovely dining room and joined in activities. I'm certain that I will be able to do the same. Like others have said "do your homework". Visit facilities and look for the best fit. My mom was on medicaid and my sister and I agreed we wouldn't mind living there. The staff were very kind and loving people. We visited often and at different times of the day and evening. As her health deteriorated, Hospice was brought in and they helped greatly. No regrets for mom living her last days this way.
I wish more people could see this as a positive. If you have any doubts, go and check into alternatives for senior living. It's much better than it was 30 year ago.

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I feel the same way right now. When my mom was diagnosed with AD she stopped living. Became depressed and wouldn’t leave the house. My dad had failing health and passed away. No plans were made or discussed. After dad passed my mom just watched games shows 24/7. Then my brother passed 5 months later ( lived at home didnt work. Long story)I got my mom in a wonderful assisted living. She’s is thriving. She feels comfortable around them. They go on weekly trips. Of course I feel guilty not taking her in but she also has mobility issues and I have many stairs. But I know she’s doing much better there right now. I plan on getting my husband and I in an independent living facility when the time comes. Don’t want to be a burden to my children.

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I am still young, but realize that if I don't start taking better care of myself than I will not have a good quality of life as I get older as I will more than likely develop issues from eating bad and being sedentary. I am working on getting back to eating much better, working out with weights and some cardio like I used to. I advised my mom many years ago who's now 80 the importance of keeping your muscles up. She never listened even after I bought her some weights and gave her a plan that she could do. She recently spent only 1 week in the hospital because of a bowel impaction and ended up not even having enough strength to lift her head off the pillow. Before she went in the hospital her mobility was not that good and even something like a bag of potatoes was too heavy for her. It's now been 3 weeks and we don't know when she's coming out of the rehab center but she has made progress thank the Lord. Long story short, I already told my family that if I get down and out and I am not going to get better, just put me out like a horse. Lol Seriously, I told them no intervention, no treatments, no hospitals, etc. and leave it in the Lord's hands for when He takes me home. I don't have much of a life now. If I am going to take away my family's life just to breathe air, then it's time for me to go. This place is only temporary anyway! :)
As a side note, I am so glad I found this site. It has really helped me as I continue to help out with my mom. My heart goes out to all of you here.

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ybd311, you are smart to keep active. I will be 85 this month and I go to a senior exercise class 3 times a week. I am slowing down, can't work out with 10 pound weights like I used to and my spine is so bad off that I have to sit down once in a while and workout from there. You are on the right track. Keep moving, it makes a tremendous difference. I also do things to keep my mind stimulated. Still, like an old horse, I won't live forever. I love the horse analogy.

When my mom was about 90 she had a watch that wound itself with arm movement. She thought it was broken, we took it in and had it cleaned etc. Watch repair guy couldn't find anything wrong with it. Finally, I wore it and it worked fine with me. The upshot of it is she wasn't moving enough to keep the watch wound. :-)

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Never gave it much thought until mom with dementia gets more demanding and difficult with each passing week. I come home every Saturday in a foul mood and need a drink to steady myself and to take a breathe. Those that do this full time.....I can’t even imagine how you get through this with a sound mind and resilient spirit. Every week I start with a positive attitude and after 30 minutes I start feeling claustrophobic and bite my tongue for the next four hours. I swear I will NEVER do this to my children. If my body starts to outlive my mind, I want no part of it. There is no reasoning, no compromise, just a constant barrage of demands, whining, arguing and the very worse attitudes imaginable. If I can’t be happy and enjoy my loved ones along with finding joy with every small thing.....I don’t want to be here. Life is precious, to be appreciated, not to be a drudgery to ourselves and others. Not for me.

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Exactly how I feel. Your description of "constant barrage of demands, whining, etc." fits my mom to a tee - but then, it did before dementia.

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I agree with everyone's answer. I am in pain all the time from chemo I took in my 40's and 50's. I had a child at home then and I had to do what I had to do. Now my current husband has Alzheimer's. He is a good man and I will do what I need to do to help him. BUT, if my health gets too bad I am out of here. I will not go from doctor to doctor looking to be young and pain free again. It isn't going to happen.

As long as I can be useful, I will stay, but if I can help it at all, I will not be a burden to my kids. My two children have their own load and burdens to carry. If at all possible I will not add to it.

I a going to be 85 later on this month. It is interesting how I can see my body gradually shutting down. I have to take Vitamin D and B12 because my body doesn't absorb it any more like it used to. My husband who is outside usually 4 hours a day, has to take Vitamin D also because his body doesn't absorb it either. Kind of interesting when you look at it that way.

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MaryKathleen, speaking of Vitamin D, how I remember driving by my parent's house [we lived in the same subdivision] and seeing them on their enclosed sunporch behind the sliding glass door with their pant legs rolled up trying to soak up the sunshine.

Even in winter, there they sit in their heavy jackets, Mom with a knit hat and gloves, again with their pant legs rolled up :)

I am also on Vitamin D and B12 as blood tests showed I was below the norm. And back as a teenager, I use to worship the sun !! Guess it doesn't get stored up for a rainy day :P

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It has certainly made Hubby & I discuss it. We have discussed letting our kids have their own lives. Not expecting our kids to move in with us, or to demand we move in with them, not to ask for cash to support our lifestyle & to take the necessary steps if we lose our insight & can't live safely on our own.

I DO NOT want to be like my Mum who keeps trying to cancel the respite care that gives Dad 3 hrs break (from his 24/7 caregiving). She also suggests I quit my job to care for her & my sister. (Do you want your Grandkids to starve? Is my usual answer).

And NOT like my stster, who lives 'independantly' ie alone but requires 20+ hours of care for ADLs, transport, shopping, outings + medication, appointment & financial management etc from family.

They need what they need, I just don't agree with their expectations that 1-2 family members can provide it all.

I want to be like my Auntie, Moved herself to a lovely village. L1 independant, L2 assisted, L3 nursing care, L4 memory care. She's L1 but says she'll just move up as needed. Practical.

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I plan to move myself to a lovely village too, when this is over and if I have enough money left. Right now my hands are full but i need to identify those with all four levels based on what I've seen with hubby. Guess I could manage without independent living but kind of looking forward to having pretty much no responsibilities! Almost 72. Hubs 87. Doubt it's doable while he's still with us--he's happy at home with caregivers & me too. Need to make sure my documents are in order in case I lose my mind. But in answer to the original poster's question: Yes, it has changed me in that I don't think before this I really thought any of it would apply to me--I guess I just thought I'd go on indefinitely if I thought about it at all. Hubs was strong & smart and active & got dementia anyway.

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Yes, and it reinforces something I had forgotten about. 35 years ago, my husband had leukemia & the treatments were brutal. His quality of life was about 3 good days per month. After the 1st (& only) bone marrow treatment (it was a pilot program at the time), he decided enough is enough. He wasn’t going to get better or cured, so he wanted his remaining days to be as best as they could. He wasn’t very religious, yet still said “it’s God’s will”.

After seeing what my mom (dementia), brother (lung cancer), & FIL (lung cancer) experienced, I have made it VERY clear to my family my desire of quality over quantity. FIL did that by refusing certain “suggestions” from his doctors & he passed after experiencing uncomfortableness instead of the flat-out agony my brother experienced. His family doesn’t realize what a gift he gave them; I hope they do over time.

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What a beautiful answer! You inspire me...especially to really enjoy a piece of cake!

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