From Karen Stevenson Brown, publisher of ElderWeb:

I have begun a comprehensive look at the history of long term care in America over the years, both how we have provided care and how we have paid for it. It provides some fascinating insight into when and why our long term care system evolved as it did, and I have created a special section of the ElderWeb site for this information.

This is still a work in process, and I have been going back and re-writing sections as I uncover more information. The posted material covers the period from the inception of the country in 1776 to just before the Great Depression started in 1929. I will be bringing the story forward to the current environment in the weeks to come.

Some tidbits from the information posted so far:

► In colonial days, “old age security” meant having children and/or property. Old men and women who had no children to care for them and no money had few good options available.
► The first “institution” for the poor elderly was the poorhouse, where “inmates” had to give up all their rights. It was like a prison, inmates couldn’t leave or have guests without permission. They were even forbidden to wear their own clothes—they had to wear a uniform. Many of the elderly shared space with the mentally-ill, who were sometimes chained and kept in pens or stalls.
► “Benevolent Societies” created one of the first organized old-age assistance programs. Members paid monthly dues to the Society while they were young and healthy, then received help when they were elderly, infirm, or in need.
► “Old age homes” were developed during the 1800’s to protect “respectable” people from the “indignity” of the poorhouse. Some of them required the recipient to pay an up-front fee and turn over whatever income and assets they had in exchange for a guarantee that they would have a home as long as they liked—an early version of what we now call “lifecare”.
► Early retirement communities were also developed during the 1800’s.
One had “convenient two-story brick cottages”, a community center, a hospital, and its own water system.
► While fewer people lived to age 65 or age 85 in 1900, those that did had nearly as many years ahead of them as people of those ages do today. There were reports of hundreds of people who lived past 100.
► Urbanization and the migration to the west in the 18th and 19th centuries reduced family sizes and disbursed families so that older people could not count on having a family member available to care for them, increasing the need to develop alternative solutions.

You’ll want to read the story online so you can see the photographs of poorhouses and old age homes of the time. You’ll also want to take a look at dozens of interesting pictures, narratives, graphs, and charts collected in the appendix, many from the wonderful Library of Congress American Memories collection. more...

A snapshot of Our Live with Mother(via emails today):

Betty:

I don't know whether to scream, laugh or cry!!! Mom has called me I bet 6 times already today!!

I guess she ends up having a 2 pm appointment with Petersen and a 3 pm follow up with Jung. They are leaving now for appointments.

Mom's last call just now; said did you know I had 2 appointments today. I said yes Mom I gathered that from your last 2 calls. I told her to get moving cause she is not to be late for that 2 pm one!! But I think they
will be.

Boy, do I need a vacation!!!

Trish:

...and the sad part is that Mom knows she's interrupting, and she's so sweet about it, you hate to say anything. She was telling me today that she's once again forgetting about what happened since they left New Mexico. She readily admits to me that she remembers enough to know she DID know, but she can't grasp ahold of the details. I told her, well, Mom, do the best you can, and don't worry about the rest. That's all you can do, and she says, yes, I suppose that's true. She then says, I hope you don't EVER have to go through this, Trish. I told her it must really stink. Yep, it does, she says.

Life definitely has its ups and downs, and as Mom says Grandma would say, there are more downs, so definitely appreciate the ups...

Every time one of us says the secret code "I'm going insane...", we gotta reach out to that one! Hang in there...

Mom has had her share of physical problems over the years. Her own mother suffered from arthritis and diabetes, the latter causing complications that eventually led to the amputation of one leg below the knee.

These are some of the conditions Mom has suffered from - and is still suffering from:

Meniere's Disease - "Since the attacks of Meniere's disease occur irregularly, may be triggered by outside forces, and may go into short or long remissions, it is often extremely hard to determine if any given treatment is actually working or if the disorder is just in a quiet phase. This has made studying this disease extremely difficult, often producing scientific opinions that contradict one another. There are many different treatments available for Meniere's disease. Some will work better than others will for individual patients. It is often very hard to find a treatment that will work best for any given person."

As long as Mom can remember, she has suffered bouts of this condition. It will come on suddenly for her, causing severe dizziness and nausea. The only thing that helps her both cope with the symptoms, and help her get over it, is to retreat to her bedroom to quiet, darkness, and stillness. No one knows what causes it, nor is there any one way to treat it...

Raynaud's Syndrome - "Raynaud's phenomenon is a condition caused by a problem in the small blood vessels that supply blood to the skin. During an attack of Raynaud's phenomenon, the blood vessels become smaller (constrict), limiting the flow of blood to the hands and feet (less commonly the nose or ears). This often causes fingers or toes to feel cold and numb and then turn white. As blood flow returns and the fingers begin to get warmer, they may turn blue, then red. The fingers may begin to throb and become painful."

Mom has been vulnerable to stress all her life, succumbing to what was once called nervous breakdowns at least twice in her life - her miscarriage in her first pregnancy (1943) and later on in the early 1950's when Dad was gone a lot working and she was home alone with my two older sisters. Mom also said she frostbit her hands badly when she was young. Together, these are strong contributory factors in this disease...

Meningocele ("Tethered Cord Syndrome" - Adult Onset) - "Adult onset of tethered cord syndrome is a rare pathologic entity. Its treatable nature makes early diagnosis and timely surgical intervention important goals....Thorough clinical history and physical examination should direct investigators to include tethered cord syndrome in the differential diagnosis of select patients."

When I read the document the above quote is from, I realized that my sisters and I are very lucky to be here. Mom said she was told that if she had waited a week longer to have her surgery to fuse the lower spine, she probably would have been dead. She said she asked the doctor about having children and he said he thought she should be able to. She was very nervous about it, but did so. During her pregnancy with Betty, she carried all out front, nothing to the side, and her back bothered her a lot, but she made it through OK...

Glaucoma - Glaucoma occurs when the optic nerve is damaged. In most cases, increased pressure in the eye plays an important role in this damage. The damage to the optic nerve causes loss of peripheral (side) vision. As the disease worsens, the field of vision gradually narrows and blindness can result.

Since Mom had regular eye screenings (good for her!), they caught hers fairly early. As long as she continues to have her eye drops given correctly, the progression is virtually halted, comparatively speaking...(old age affects everything anyways, including our eyesight...)

Mom emailed me tonight...

From: harrietshort
To: trishymouse@hotmail.com
Date: Fri, 07 Jun 2002 22:17:35

i am trying to practice on this little gizmo to see if i can learn how to master it. i am determined t0 do so and will probly do so before i kick the bucket . i spelled probaly wrond and still do not k now for sure if i got it write . there i did it again. i can hear you giggle. smarty. i must get tobed and see if i can get to sleep tonite. love you and wish i could give you a good nite kiss and hug and tuck you in love mom

Paradox

When I was growing up, I was in awe of my Mom. I didn't think of it as awe at first. In the beginning I just thought, "She's so tall compared to me..."* As I was growing up, she always seemed so confident, so strong. Little did I know that while this was true, it was also false.

Her bravado masked a weakness. She was vulnerable. Only through time did I and my sisters come to realize that our mother was more than just our mother, but a person. A person as complex as any of us. She had a story, and it was utterly fascinating.

I'm not sure where it came from, this vulnerability. Grandma Fitzpatrick, our mother's mother, was a very strong, independent woman. Circumstance necessitated that she was. Eventually she was married to my grandfather, Sheldon Albert Fitzpatrick. My grandfather was a man with a great sense of himself - confident, gentle, and a devilish sense of humour. Despite her independence, they were a great fit for one another. Their combined intelligence, resourcefulness, depth of faith, and sense of the work ethic passed to my mother.

However, despite this foundation, Mom was vulnerable. It manifested itself during times of emotional stress. The first time we became aware of it was from stories told to us years later...about when Dad and Mom were first married, and Mom was carrying her first child - what would have been our older brother. She miscarried, and the resulting circumstances became a blur to her, Dad taking her on a train trip home that she doesn't remember. Years after that, Dad was working away from home. Mom had two small children on her own, and despite the support she had from her parents, it became too much for her. Once again, she became overwhelmed, and had a nervous breakdown.

Now, since Dad died last year, she's showing this vulnerability again. I'm convinced that it's not just her age. No, it's more than that. She's devastated from Dad's loss. She's coping the best she can. We're a source of strength and support to her, but she still misses him terribly. The sincerity of her pain is physically palpable when you're in her presence. It's not every day that you witness a love and devotion so utter, so strong, so elemental, that you know that the person's grieving will not have a quiet, neat ending, a moving on...Rather, it will continue to the end of their lives. The depth of the connection between them and their loved one passed on is such that it cannot be any other way.

It makes those of us living life at a younger pace uncomfortable. We don't know what to say, or what to do. I smile when I think of it. My mother is a fantastic person. She worked SO hard all her life, in the shadow of a woman she greatly admired and never felt she lived up to, her own mother. I feel the same way about Mom, as she has about her own mother. I don't know how much more of a compliment you can give another person.

Despite our times of conflict (mostly due to the fact that we're both intelligent, strong-willed people), I love my mother more than anything. Exasperating, frustrating, yes. But inspiring, loving, supporting, yes too. That's my Mom. Harriet Short...

*(Now I think, "She's so small compared to me...")