Why does this process have to be so hard?

This process is so hard because hardly any of us have had any training, there is no mentor to show us what to do. And a majority of those who need help will argue that they don't need the help.

Then comes the cost of aging here in the States. I was like a deer in headlights when I found how much it cost to hire caregivers, and the cost of Assisted Living or that of a skilled nursing home.

Then we have senior citizens trying to take care of much older senior citizens. Those older seniors still view their grown children who are now experiencing their own age decline still as being in their 20's and 30's, and are surprised when we just can't do all that they want.... [sigh].

People marvel when one's parents live to be 100.... but fail to realize that means their grown children are in their 70's and 80's. That could mean one grandchild is helping to care for his/her own parents and grandparents.

I think a psychiatrist who was treating my husband got it exactly right. Medical science has moved ahead by leaps and bounds in the last generation. It is now routine for people to live into their 90s. But the social sciences have lagged far behind. We do not have the infrastructure to support an aging population. Laws concerning dealing with the elderly are a hodgepodge of rules established at different times for different purposes. Most of them are concerned with keeping the elderly from cheating on taxes; only a few deal with protecting the elderly. It is so complex that a legal specialty has emerged to navigate it.

An economic system that was designed to support people ten or so years after their retirement now has many living 30 years or more without producing income.

Perhaps the social sciences will some day catch up with medical progress. But right now it is waaaay harder than it should be to provide excellent care for the elderly.

Another aspect is that we're so often on both the giving and receiving ends of the caregiving process. We're required to give so much to care for someone, but we also through no fault of our own receive criticism, not only from our family, but from ignorant people who know nothing about caregiving yet think they have the right to offer unknowledgeable opinions.

And we're not in positions of power. When I was working, I felt appreciated, making positive contributions to clients, and my work was respected. I'm not sure that's often the case in caregiving, even when our charges do express their appreciation w/o understanding the sacrifices that are made to accomplish that. We're not Energizer Bunnies but often are expected to beat like that cute little bunny with the drum and lots of energy.

What I find the most offensive are the "suggestions" and questions of these kinds: "you might want to do this", or "you should be doing such and such" or "why aren't you doing x, y or z??" I've often had to exercise great restraint not to respond with "why don't you either help or mind your own business!"

Oh how I hear you. The cost is out of reach for almost all of us. Doctors and nurses are too often clueless as to the emotional and physical toll on the caregiver and will sometimes make cold and uncaring comments. The insurance system is a nightmare to navigate, and until you've spent days and weeks on end sitting on hold waiting to once again explain your needs and be questioned about it you have no idea how soul killing it can be. Add to that the stress of taking care of your own children, a job, yourself. Add to that the impending grief associated with the death you know is coming. Add to that the utter loneliness of it all. Arrrgh. Well, we're all overwhelmed.
If I was going to take up a cause, it would be exactly this issue. We need better trained medical personnel, facilities that specialize in the needs of the elderly (not just assisted living and nursing homes, but like geriatric psych hospitals and the such), more discussion about how to support caregivers emotionally and financially, and an insurance system that knows what the heck is going on.
But I will say this: this site is a one bright light in all of it, so use it and lean on it for support.

I hate those commercials FF....they are so insulting to care givers who know better. Plus the health care workers in those commercials always look like they have fresh, crisp uniforms on and serene expressions when in reality they usually look harassed and tired.

Here in Vancouver, Canada, they air these news stories celebrating seniors who have run marathons and are working well into their eighties. It's almost like they are trying to say "see, if you had taken better care of yourself, this would be you too" Why not air stories about the care givers who despite all the odds being against them are trying to provide a dignified end of life for their loved ones without the help of the government.

Coralmae, I have seen where voters will vote "no" to upgrade the schools or build a library in their area, I can't imagine them voting "yes" to higher tax rates to take care of the elderly and the families where there is a special needs child. I would pay a bit more, but in some countries the taxes are closer to 50% of your income for universal health care. Yikes.

You know I was just thinking the other day, I wish people would ban together and make home films as to what it is really like to take care of an elder, and have all of those in Congress and the current President view these films. Of course, we wouldn't be able to use an elder with dementia, because they can't consent to be filmed, so actors would be needed. I think too many people think life looks like the commercials for meds for Alzheimer's, everyone smiling and hugging.... [sigh]

I think another factor is that the US is youth oriented. Older people don't have the same level of respect that some countries, such as certain Asian countries, have for their elders. Native Americans had that respect, or at least they did before the whites suppressed their culture. (BTW, I'm white, but glad that my ancestors weren't any of those who abused another race in the processing of subduing it.)

FF makes a good point; it's not easy to provide extensive caregiving when we're in our 60's, 70's or sometimes even older than that.

There was a recent (PBS?) showing of a film on dementia, with interviews of a few families dealing with it, as well as one of the NE states that had a very, very limited health base to support any treatment. One of the women featured was caring for her mother with dementia, had also been diagnosed as having a genetic predisposition for it.

She went to Washington, and I believe testified at a hearing. But she also met a few legislators, including a man who had experienced it in his family.

If the Senate and Congress had more members with experience in dementia, as opposed to younger upstarts who are more interested in power plays, there might be more attention given to funding and research for it.

Gershun, well said. I despise those syrupy, cheerful commercials with glowing, rosy faces and happy dispositions. They convey a false and primarily fictitious representation of older life and older care.

Too bad someone doesn't have the guts to make a film of someone portraying so many who gaze with unseeing eyes, literally catatonic, sitting in their chairs for hours staring but seeing only a dismal future for themselves.

CounrtyMouse, there really have been major improvements in the structures we have for protecting children. Perfect? OMG no. but really far from Dicken's England. And it isn't always government that instigates the changes. Labor Unions are responsible for child labor laws.

But for dealing with dementia we are starting almost from scratch -- kind of like being back in Dickens time. And BTW Dickens himself was instrumental in exposing inhumane practices, and that is the first step in getting change. Maybe we need a popular novelist to expose the flaws in the present system. It wouldn't be very cheerful reading, though would it?

We've always had people who lived into their 90s and even past 100. But when they are fairly rare in a population they can be dealt with case-by-case. With the aging boomers we have an entirely different scenario. We need changes to our infrastructures. We need a global vision and not piece-meal band-aids.

Giveup, in addition to freqflyer's observations, I have a few other thoughts. There are tools out there to help, but we don't know much about them. It is through forums such as this one that we hear what others have used to get past a point.
In most states, bed guardrails are illegal. But my MIL had need of something to grab on to to assist her in sitting up. The assisted living facility limited u s to one type, one we were not familiar with. BUT the Halo handle did work great and MIL loved it (once she stopped saying she didn't need it!)
So what is in place for your loved one? Is the home setting workable? One floor, easy access no throw rugs, grab bars in the bathroom, etc etc? Are there caregivers or family to help? Are there resources (looking ahead) for such things? Are POA papers and healthcare proxies in order?
Tell us more specifics and perhaps you may get perfect ideas.

GardenArtist has point regarding comments from other people such as relatives, friends, or co-workers.

I remember when I was grumbling about driving my parents [90's] all over hill and dale, a co-worker said to me that my parents had taken care of me when I was a baby..... to which I said "that is true, except my parents weren't 65 years old when I was a baby".