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Sometimes when I read things I step back and look at how things are when it comes to caregiving. People are living a very long time now. They often outlive their children. Many caregiving children are now in their 60-80s themselves. Yet the parent still calls the shots and the adult children are expected to obey like they are 12 years old. What is with that?? It is actually crazy that we feel like we are lesser people and they are the boss. To be completely truthful, many elders don't have enough sense to come out of the rain. Yet we feel we still need to obey. That sounded bad, because it goes against what we are told we should believe and feel. We were raised with this programming that makes it very hard for ourselves.

Some people compare caring for elders to caring for children. It is not the same at all. My mother would be in second grade now if she were a child. Even if she had told me that she didn't want to go to school, I would say you're going. Period. But we feel like we can't take a week away from our parent because they don't want to go to respite or let someone come in the house. Is that crazy or what? It seems to me that we give all rights and respects to the oldest and expect the caregiver to give up their own. If I had talked to my mother as a child like she talks to me, she would have slapped me across the room.

People are going to have to change their thinking when it comes to caregiving. The caregiver needs to be the boss. The parent needs help, but everything cannot be on the parent's own terms. The caregiver should not have to give up their own homes, their jobs, their own families, their dignity, their money, and their hope to accommodate someone who refuses to give an inch.

I know a lot of people will argue with me about the years spent raising us and how we owe them. I somehow seriously doubt that children drain the lives of their parents the way that elders can drain their senior-citizen children. Gosh, it feels good to be honest. There has to be a better way than spending 10-20 years at this lonely and thankless task.
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Jessie, you are so right.  I felt at times that my parents still thought I was 30 years instead of a senior citizen.   I still remember how they reacted when for the first time I bravely said "no" to getting my parents 30 bags of mulch.   I just couldn't do it any more at my age.   Dad said that Home Depot would put the mulch in my Jeep.... then I asked Dad, "do I bring home the employee to help unload the mulch?"

Another thing, why is it that our parent(s) won't listen to us but would listen to a paid professional caregiver?   What makes it so different?   Could it be the uniform the caregiver wears that brings a sense of authority?
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The best I can think of it is that it's programming. No matter how old we get, they are older and they are the parents.
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More people caregiving need more outside advice. This why I am taking my 10.5 years experience as my mother's primary family caregiver and using it to start a dementia care consulting business. Each of us starts this journey alone and caught up in the stress we stay alone. We don't know what help is out there (or not). We don't know how to ask for (or demand) help. We don't have any sort of plan.

Here are some things that can help:
Alzheimers Association alz.org
Your local Area Agency on Aging (might have a different name but they exist in all states)
Support groups (see above)
Don't drink the tap water without filtering it first
Organic fresh foods. If you must use packaged make sure it's organic ("natural" means nothing)
Urgent care clinics exist. They can be very helpful
Religious groups sometimes have volunteers for companionship and transportation
Meals on Wheels
Advocate, advocate, advocate. For your loved one and for yourself.

Start at the top. Good luck.
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*Jessebelle* your post was honest and it needed to be. This is an unprecedented time in human history. Most elders are living longer due to better medical programs which they aged into at the right time. We, their children have often not quite reached the Medicare benefit age. We need to work to keep paying into the system. The tasks to take care of the elder (as society seems to dictate these days) take up the entire day. We have little time and less energy for ourselves. Society also does not acknowledge us as the person with authority to manage and that needs to change -- now! Yes, we are very dis-respected by the elders. It gets chalked up to "quirks of old age." The persons who fluff it off have probably not had to deal with care for more than a year. When it gets to be several decades of caring for them then it becomes stressful -- and stress causes ailments.

More funding needs to go into regular nursing-home facilities. The waiting list is so long and the rules so stringent. I am appalled at requirements like "needs to have a stroke, or heart-attack" to get admittance without a battle with the bureaucracy. Once persons are in their 90's the nursing home beds should be readily available -- and the variable be a family petitioning to keep the elder at home. Also, I think that a re-structure of how doctors do appointments is needed. Allow a caregiver to get their medical appointment done in tandem with the elder's appointment, no matter what insurance carrier they have. Also, require more "home visit" general practitioners too, to visit the elder and caregiver for checkups. That would be a good incentive for medical student scholarships. If the student agrees to fill the "needed medical position" and do this for at least a decade then we can begin a structure of having enough doctors/nurses to do the jobs that are needed. I wish a program like this would start right now, this very year, for once have enough doctors to assist in care for persons over the age of 50.

You all have a life too, and if you've spent more than 3 years caring for the elder at home without respite, then you need to step forward and make yourselves heard to your legislators. I honor and respect you all and still living it myself so very glad for this site to share thoughts.
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I have been thinking about this thread for a few days. I had a little taste of what 24/7 caregiving for my mother would be like when I had to stay with her for 8 days (and nights). She became nearly helpless. She ordered me around as if were just the puppet to fulfill her OCD needs. I did get out occasionally to swim my laps and go to church. During one of those outings I bought junk food to hoard in the bedroom I was staying in. I needed that comfort food!

I was so angry by the end of that eight days that I was hardly speaking to her. (And then months later she told me that I did not stay with her that long; that it was only one or two days and that she didn't need anyone with her.) In retrospect, it was a good experience for me, because I have learned that I cannot become her personal care attendant. My health would suffer greatly.

I've read on this forum how people attribute cancer, obesity, diabetes, depression, skin ailments, high pressure to the stress of caregiving. And I fully believe it!

My mother has three darling sons, and when the time comes that I've had enough, I have told them that I am walking away. She will be their problem to deal with, even if they are states away. I have a one-story house, and she will NOT move in with me. No way, now how. 
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onlyoneholly, I see a huge cloud on the horizon. Eldercare programs, including SS, Medicare, and Medicaid are all up for review by Congress. Ryan and cronies want to push back the retirement age and reduce SS payments in the future -- I think after 2030. The idea of Medicare vouchers and reduction in Medicaid is going to impact older people. With Republicans in charge of both chambers of Congress and the presidency, I guarantee we are going to see some changes fairly quickly. Obamacare is already on the chopping block. SS has already had some bill presented in the house. We are looking at a rough road for elders in the future if this keeps up. Maybe they are hoping all us older folks will jump off a cliff or something. :-(
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Oh, I forgot to add that what is going on will mean there will be a greater demand for family and private caregivers, instead of a lesser demand. Maybe family caregivers need to unionize or something so they'll keep some of their rights. Family caregivers give so much, but are pretty much ignored beyond lip service.
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Beenthere60, I didn't read Dana's comment as her wanting to end her life to spare her daughter! Not at all. What I heard her say --- which I heard probably because I've already said the same thing to my children -- is that she's planning out how her own daughter will never have to go through this. I told my children the same thing. I told them that long before my husband and I need this much care we will be living in a retirement community, one of those three level ones where you go in with independent living, then you can move to assisted living, then to nursing home care if you need it. I will never ever put them through what my parents have put me through. -- That's what I hope Dana meant.
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I feel much the same way. After watching my parents grow old, I have no desire to go through the same thing -- feeling bad all the time, not being able to do for myself, not seeing or hearing. I don't long to live to 100. I have no plans to off myself, but I also have no plans to fight a terminal illness if I am old and infirm. I don't want to live that way. I know I may feel different when I get there, but knowing me, I doubt it.
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JessieBelle: The elderly parent shouldn't, in any way, be calling the shots. Good grief!
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OH MY GOSH!!! Jessie, your post above is the best! I am glad that you said and that I found it! What a relief to see such clarity in print.
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Caring for older people is in no way the same as raising children! I'm with you guys in that I hate it when I hear people say it is anything like that!

I know this to be true, as I raised four terrific kids to adulthood and while they are doing great and thriving in their 30's, the senior parent  (my FIL, not my own, as that too would have been so much different) that I am caring for in my home, is declining on The Daily! He is a rude, demanding, and obnoxious  NARCISSIST!

Whereas we love our children unconditionally because they are an extension of ourselves, the seniors we care for to some degree, often become so demanding and overbearing, that we soon grow to resent them and the love that we might have once had for them changes or diminishes to a certain degree.

And while we are usually younger and healthy when we have our children, to then take on the task of full time care an elderly person while you yourselves are entering middle age, or  your own senior years, sucks the life out of you, and these are also the years when our own health is declining in the natural course of life, and then it compounds our own decline.  Its So not fair!

Even more resentful, is when you take care (for years on end), of a Senior parent who has never ever, even for One Day, Ever cared for their own parents, yet expect you to honor their life's every desire, until they die, leaving you No time to enjoy your own retirement

What's that all about?
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Staceyb, that is so true. The elder believes the false assumption that you are so much younger than them. And also believes that you will live healthy as long as they did. I have heard stories where the caregiver dies due to neglecting themselves and the elder just moves on to the next host. It's disgusting. I know many of them can't help it because they have dementia, but that is all the more reason that we as caregivers need to make all the decisions. I have to work on this myself. The days of mom calling the shots are coming to an end.
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staceyb: Spot on accurate! Kudos to you!
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Besides my minor stroke, I had depression for 3 years.
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