I just checked the blog and noticed Don's last and latest entry suggesting I might fill in while he and Jane are wandering Eastern Europe.  I won't pretend to "fill in" but I can always write something or other.  He mentioned Marilyn Murray (Reh), who as a neighbor of ours when we grew up at 620 Hudson in Marion.  Marilyn's little sister Mary Sue was my age and we were good friends in those early days of my growing up.  They were a nice family who moved from Marion to Arizona sometime in my late grade school years.  Marilyn is an expert in her field of work and does spend some considerable months in Russia doing what she does.  Obviously I don't know what that is!  I haven't checked her web site.  I will do so.

I will be gone in a few days for a few weeks of R&R.  Don and Jane will be home soon.  Summer is in full swing here in the Plains.  Lots of rain and storms and floods this year, and I'm sure some significant heat really soon.  July/August can be brutal in this part of the world.  Until later.  From Kansas.

Tomorrow Jenni will drive us to LA airport. We fly to Frankfort and from there to St. Petersburg. Tuesday evening (their time; morning, our time) we'll be on the ship.

I'm not going to take my laptop with me so I'm not sure if I'll have any entries here until after July 6th. Maybe Jan will fill in for me. There is supposed to be computers and internet connection from the ship so, hopefully, I'll plug in.

We end up with 3 days in Moscow. We'll spend a day with our good friend Marilyn Murray. She was the 'girl next door' when I was in high school and we've kept in touch ever since. She's a remarkable woman. Goggle her, you'll see what I mean.

Anyway, goodbye for now. See you in 2 weeks if not sooner.

Niece Julie's story from Slate reminded me of the immensity of uncertainty, sorrow, anger, frustration, fear which AD can bring into the lives of family members/caregivers, characterized by the son in the story and his "ballistic" reaction to Dad and friend finding love and life in the midst of their shared pain of AD.  So much can be read into his reaction: his perception of his Dad being unfaithful to his deceased mother?  (This guy is still grieving her death.)  That mixed with his own immense grief in this disease?  All the fear which AD could bring to his own future?  His anger at life handing them all this "thing" which has taken over all they had hoped for in this family's future?  And now Dad is somehow reverting to behavior which sends this son over the edge.  We probably shouldn't be surprised.  Everyone loses in this, do they not?
All of us as caregivers need to take notice of the intensity of grief which besets everyone caught in this complex disease.  Letting our own stuff invade how we respond to our loved one will cause just this kind of reaction if we are not aware and ready to understand the need to redefine life and living in this entirely new context.  "Normal" is redefined, redirected, refocused.  Maybe day by day!  Check out your individual grief processes in this time.  This son would have been much more wise had he been in touch with what is rather what he wanted it all to be.  Summer has happened in Kansas City.  The floods are North, South, and East of us so far.  Enjoy today. Take care.  Jan

My niece, Julie, sent me a copy of an article from Slate, the internet magazine titled; An Affair to Remember. It was about two patients in a dementia care facility, the woman was 82 and the man 93; they fell in love and then started having sex.

The two became inseparable, eating meals and sitting around holding hands and enjoying each other's company. Their dementia also improved. She began playing the piano again and he'd join in singing, not always the right tune but enjoying it never-the-less. They were like teen-agers.

When the man's son caught them in bed together, he went ballistic. He demanded that the nursing staff keep them apart and finally, the man was forced to leave. The woman became depressed, stopped eating and nearly died before she finally forgot him.

Isn't that a sad story? It speaks to some of the issues I've mentioned before; Even though dementia makes us child-like, we can still enjoy life and all it can bring. Sometimes we might behave inappropriate but give us space to live.

Our pastor's oldest child just graduated from high school and they had a open house last night in celebration. We went and had a nice time. Saw a lot of people from our church. Stood around and talked while we ate from the buffet.

On our way home, Jane pointed out that I didn't talk much. I didn't initiate conversations as I used to and seemed impatient to leave. Looking back, I think she is right and it bothers me a bit.

I've found idle conversation quite boring. I've even gotten to snapping at Jane when she runs on about some event. I used to enjoy talking current events or asking others about their activities. Have I lost that skill to talk or the interest to ask?

Maybe my boredom is depression. Certainly that's been a problem lately. I don't think I'm confused or unable to formulate comments or questions. My friend Frank, who has Alzheimer's and I visit weekly, is stuck on a few stories, which he repeats every time I see him. Strangely enough, he was very quite this week as well. Maybe is the weather.

More likely it's just part of the disease and I'm just falling into a less social pattern that is inevitable.

Jane and I are busy getting ready for a trip to Russia. We leave June 23 and come back July 8. It's a Viking river cruise from St. Petersburg to Moscow.

Jane has given me a 'honey do' list. She is so efficient it makes me want to throw up. If I ever lose her I might as well walk in front of a train. I couldn't survive without her. 

In the middle of all our scurrying around, we had a tv crew out to interview us yesterday. This is an interesting organization called 'PACE Television' out of San Diego who produce cable tv pieces directed toward a senior citizens audience. What is unusual is that all the workers are retired senior citizens. Anyway, the interview will show sometime in mid-July on Time-Warner Channel 19.  

I'd better get going. If Jane comes home and catches me fiddling with the computer she'll yell at me.

Great news about Jenny's new job.  It sounds like a great fit.  I really don't have any wise addition to ongoing comments from the 'ol Bro and all of you.  Just decided on this cool, rainy, early Summer day in Kansas to write something to keep myself in the mix of things here. 

One observation which may not be known to all of you are the connections this blog has made with other persons in other places who have great interest in this subject.  Don's writings and involvement in the AD movement have caught the attention of people who care about doing something which will impact research, care issues, all areas of funding concerns which have been expressed in this ongoing discussion.  As I look at the rest of my life after this work I am doing now, it could be all of us will continue to "beat the drum" to such an extent we can permanently and positively impact how we as a society confront AD in the long term. 

Time will tell.  For sure the discussion in this space is a supportive conversation which has great meaning to many people who have been affected by this disease.  Keep writing.  That's it from Kansas. 

Jenny got the job and she starts work tomorrow. I'm so excited for her.

As I understand it, she will be working with residents on a personal level, interacting, visiting, reading, playing cards and trying to communicate on their level. She'll also go on recreational outings with groups. Jenny is so compassionate and patient, she'll be great for that job.

Maybe this is the answer. Rather than changing the role of the person doing the grunt work -- bathing, making beds, cleaning up; or the professional, passing medicine, charting, feeding -- just add a person who is compassionate, like Jenny, to provide the setting of comfort and care that improves quality of life.

The way to make this happen is to search out the facilities with these extra services available for you or your loved one. The market forces will do the rest.

My daughter, Jenny, is about to get a new job in one of the Silvarado chain of facilities for dementia and elderly care. Her interview was something to behold. We share the same misgivings in these institutions and she approached them with her concerns on her sleeve and they listened!

She explained her ideas of 'compassionate caregivers' and they thought it was great! She hasn't gotten the final word yet, but she is waiting for the call to start.

It's refreshing to find out that some of these big chain facilities can recognize the need to move in new directions. I'll keep you posted as to how this works out.

Time slips by and I often forget I haven't written a blog. Well, here I am.

I spend a half day a week taking out a friend from church who has Alzheimer's more advanced than mine. He seems to enjoy it and it gives his wife a bit of rest.

Anyway, it gives insight into my future. I try to take a positive spin to the experience and learn how I might want to be treated when I repeat the same stories a dozen times or can't remember how to open the car door.

Last Friday, we walked out to the end of the Oceanside pier and back. We stopped to watch surfers catch waves and men fishing. It was a sunny, nice day and I think he enjoyed it.

We may do the same thing next week. He won't remember it. He usually dosen't remember me. That's ok. we have a good time anyway.

Had a return appointment with the neurologist at UCSD today. I had to use Jane's car with the GPS to find my way back to his office, even tough I've been there twice before. He past it off as being a long time (6 months) since my last visit. It wasn't that long ago I would never have lost my way back to a place I'd visited twice before.

He gave me his usual test and pronounced me normal... again. Possible MCI (minimal cognitive impairment) but he's not yet ready to call it Alzheimer's. That is not disappointing news. I don't want to be progressing. Yet, something is wrong with me and it would be great if they could be more precise.

Activism at the grass roots can change the way things are done now. If profit drive the system, we just need to threaten their profits.

Those of us looking for nursing homes or who have a loved one in a extended care facility should begin to criticize publicly about the care. Here are some of the things to look for:

1. Are patients dirty or unkempt? Are they properly dressed for the time of day?

2. Are people sitting in the hallways unattended while staff are gathered at the nursing station?

3. Are there smiles, hugs and quiet voices or does staff yell, push and shout orders?

4. Do staff have time to do their job? Do new faces appear every time you go to visit?

5. Is loud music playing? Are patients  parked in front of a tv?

There are probably other questions you can think of but you get the idea. Gather the evidence by watching, then write it all down and carry it to the director. Your number one demand will be to hire more staff, pay them more and train them better. Your loved one deserves a caregiver who will spend time making their life as meaningful as possible.

You are not demanding much; one forth of a nursing aides minimum wage pay to take care of your loved one. That would mean one nurses aide would be responsible for 2 patients each day shift, 4 patients each evening and 6 patients each night. That is one forth of $64 dollars or $16 a day. This absurdly low figures is an example of how our argument should go.

Now that Jan has responded again to the Nursing Home subject, I must too. Investment opportunities in our capitalistic society carry a power all their own. They attract money by promising big returns on investment and little risk. So when statistics show the surge of dementia care in our future (coinciding with the surge in baby boomer's) who wouldn't look at the nursing home industry as a place to put your money.

But, this industry has learned from long experience that the way to attract business is not to appeal to the patient who, after all, is barely aware of their surroundings and not in a position to complain. Rather, they market to the families who are out to find a nice place for dear old dad. So the fancy buildings, decor and trappings appeal to them that it will be a happy place and dad will be safe and secure.

It's like the movie set. All a facade, made to look like a palace but really a mad house. All it would take to change that is to take the money spent on the excesses in buildings and things and spend it on trained, qualified, caring staff.

I've passively been following the rich discussion of our nursing home dilemma in this country.  It would seem it is close to the surface for many of us, isn't it? 

As a care-giver myself, over these past 28 years of Christian ministry, I have been exposed to the best and the worst of nursing care in many communities which I and my family have called home.  It would seem to me as I reflect on this past three decades, not too much has changed dramatically in advancing the quality of care of such institutions.  This is interesting because we are living longer, the "boomer" segment of our culture is coming of age, hitting the sixties, and with the economic resources this segment has at their disposal, the pressure such economic strength should exert on nursing care, all should equal a visible improvement in such care.  It isn't happening. 

I think Don hits it right on when he observes big money controls this side of our institutional care for the aging.  Do I think we can impact the system and bring about change?  I am not encouraged  we can.  However, if we boomers and the remaining segment of the generation preceding us would unite it just could be we can make a difference. 

Maybe a strategy of state by state would get it started.  The reality of that statement is Congress and federal support of realistic and focused change will have to happen.  I have to be honest and say I don't have too much faith the federal side of this support will happen.

As my spouse and I move to 65, continue to pay our long term care premium every year, the reality of what many of you face, what she and I may face comes  close to home.  I 'm not sure any of this statement opens new ideas but it is what I sense as I listen to many of you in this discussion.  From Kansas.

Maybe some of you don't know this but in the background, this blog counts activity and lets me see statistics whenever I want. I point this out because my brother Jan's entry 12 days ago about Nursing Homes in Kansas has been read by 98 people. He has also had 4 comments entered on that entry.

Now this is an unusual number of hits on one blog entry. Usually it's in the 30's or 40's. This past week, 2894 blog entries were read out of all the past and present entries. That is about average so, for whatever reason, some of you are particularly interested in our nursing home controversy.  

I don't know what we should be seeking: Closer state oversight of these institutions?  Demands for transparent financing?  Closer controls on qualifications and salaries?  Big money controls these institutions and it will not be easy to break through that barrier.  

After arriving back from Washington 4 days ago, I've had to rest up from all the walking.  I'm feeling good now so am back at work. Gave a talk at a local Rotary Club today at noon. Seemed to come off well and had a lot of questions.

There is quite a lot of publicity on the internet about our meeting. We all attended a Senate hearing on Alzheimer's where Sandra Day O'Connor and Newt Gingrich testified. Darryl White, one of my colleagues on the Early Stage Advisory Board also testified. I hope we made some impact.

Well, we're back. Got up at 3 am (midnight west coast time) and flew through Chicago to San Diego. Arrived at 10 am. After yesterdays marathon on Capitol Hill, I am exhausted. Have taken it easy today but tomorrow I have to hustle.

Saturday I am going to speak at a forum for senior citizens and follow that on Monday with a talk to a Rotary club. Have to do some preparation tomorrow.

The Washington event was truly an inspiration. Four hundred and fifty people, most with early Alzheimer's, were there to lobby and learn. I'm constantly amazed at the uplifting message from those suffering from Alzheimer's. They are all so positive and upbeat.

It's a good lesson for all. You don't need to get defeated by this terrible disease. Put on a smile and go out and talk to people.

We've been in Washington for 3 days now and having a good but tiring time. My wobbly knees make it hard to get around, particularly walking stairs or getting in and out of cars. Despite that, we've had time to visit the Newseum, a new museum devoted to the history of news reporting.

It's an amazing place. The current front page of nearly every large city is available to see posted on display. There was so much to see, I can't describe it all. Just see it if you ever go to Washington.

We spent a day interviewing with news media on Friday. Saturday evening we went to the National Cathedral for a lite show projected on the outside of the building. And today, Sunday, we had to move hotels. This evening we have our first meeting at dinner.

Could not get on the internet at the first hotel but made from here so I'll get one more entry in before we leave (I think).

Tomorrow Jane and I fly to Washington, DC. We'll spend a week meeting with others, hearing presentations and lobbying legislators. It will be a busy and motivating time.

I'll take my computer along and try to blog. I'll be home May 15th.

The response to my attack on nursing homes has been rather remarkable. Jan's last entry affirms what my cousin Max had to say his comment. Small towns are less afflicted by the big chain nursing home facilities and provide better hands-on care. The answer is to move to Kansas.

Regardless, the industry is inherently poorly run and driven by money rather than patient care. Many of you have pointed out that you have had good experiences and, no doubt, you have. But when I was in practice I saw these facilities from the inside and I know how slipshod they are run... and there were few exceptions. Even the most spectacular and gilded facilities will sacrifice services for profit.

Forgive me for painting with such a broad brush. It is unfair. But we should not have to be in the position of proving their quality of care. That should be a given and it is not. They will have to go aways to prove to me that I am wrong. 

Let's move on. Keep sending comments and suggestions and I will research how we might get the message out.  

I just walked back in my office from a couple of hours of visiting in nursing/care facilities here in the Lenexa area.  These are huge operations with many employees, and many residents.  In one case, it is a rather depressing experience, with most of the employees not too connected to either their work, to visitors, and most of all appear to be rather disconnected from the people depending upon their care.
The other setting is vibrant, bright, clean, with persons working there who immediately connect with anyone who comes through the door, asking how they can help, who am I there to visit, and amazingly, immediately know where the person's room is located.  I have never entered this place and not experienced just what I have described.  Most of my parishioners who require this kind of extensive care live in this second place.  It is expensive.  It has a reputation of keeping its employees.  It is, unfortunately, not accessible to everyone: for example, Connie and I could not afford to take advantage of its care.  It is beyond our resources.
This comparison is the case throughout Kansas, in my ministry experience.  Some of the very best care places are in the smallest Kansas towns.  Some of the worst I have seen are in the same setting.  It is a profit driven business back this way, as it sounds it is where all of you live.  Do we need a revolution?  No doubt about it.  The existing system of care is so entrenched in the medical care debaucle which exists in the US I have no optimism such a revolution could take shape.  It surely won't change if we just sit on it and do nothing.  From Kansas.  jan

I'm not sure how to get started but it's evident that many of you think a rally to get the nursing home industry to change its ways is in order. I suppose we could gather statistics and stories from our own experiences put them on this sight.

A blog is not a good place to place long essays but if you can boil down your entries to 2 or 3 paragraphs, that will work. I will search for ways to distribute this work and maybe rally everyone to urge legislators to support or oppose certain congressional bills.

Evaluate the nursing homes in your community and critique them. Talk to people who have loved ones there; do they like them; are there problems? If you run across articles or web-sites of interest, let me know.

My recent diatribe about the nursing home industry really struck a spark ... lots of comments and emails.

I'm convinced that we could discuss this forever but nothing would change. Someone has to shoot down their balloon of marketing with attractive buildings and grounds to attract families looking for a placement of a loved one. If enough negative publicity was raised, they'd begin feeling it in their pocketbook. That's where it counts.

If there is enough interest, I'd be happy to help. This is something we can do in each of our localities... letters to the editor, attending public forums, writing articles.

Let me know and I'll begin feeding information here to resource the campaign.

I just had an article published in the journal, Alzheimer's Care Today, titled "The Ideal Nursing Home For Dementia Care. ACT is a quarterly publication of the Alzheimer's Association. In the article I tried to diplomatically take on the developers and investors who build nursing home and extended care facilities for dementia patients.

It's a very lucrative business. The upscale ones charge upward of $5000 a month. You'd think with that kind of money, you'd get a top-of-the-line treatment.

Go and sit in the hallway of one of these places for a day. Pretend you're waiting for someone so the staff will begin to overlook you. I'll wager you'll see things you can't believe. People are treated like cattle and dehumanized in every way imaginable.

The ACT journal would not let me be too frank. I couldn't, for example, tell the truth about the profits these people make and how they spend it all on marketing rather than for good salaries and amenities for patients. The industry should be ashamed of themselves.

I've got a file an inch and a half thick containing items related to our trip to Washington, DC next week. There are itineraries for the Early Stage Alzheimer's Advisory Group, a town hall meeting and schedules for meeting the press and the legislators. There are confirmations for airline flights, hotel rooms, etc. There is all kinds of background information... more than I could ever absorb. It's mind bogling.

But, I think we are ready to go.  We leave Thursday, the 8th and will return the following Thursday. A busy but fun time.

I read of Don and Jane's latest plan for overseas travel and realize the way I'm put together, they will have to build a highway from here to there if I am ever to see the far reaches of this world.  Some of you don't know that D & J spent some considerable time in China some years back doing some good work with medical students in Shanghai.  It was a wonderful time for all of us Hayen's as they sent regular e-mail and pictorial correspondance via the internet so all of us could see that amazing place.  I still have all the pics - so I travel vicariously with the 'ol Bro and Sis even these years later.

Our brother Bing was a career Air Force pilot, who in the post WWII years flew all over the world, including Shanghai just before the Communist revolution took hold of that country.  He was most interested in the changes which the pictures showed in that great city. 

All is well in Kansas.  I hadn't posted for a while - just to let you all know we are still bopping along back here in the Great Plains. 

We've been so busy, I haven't had time to blog. After getting back from Sacramento, we met with a travel agent and arranged a river cruise in Russia. Only problem is, that it's on June 22 and we have to get our passports renewed and visas.

In addition, we're going to take a week of a time share on the California coast about 80 miles north of San Francisco for our anniversary in August. Also we told our son's family in Michigan we would come back to visit this summer.

But first, we leave for Washington, DC on May 8 for a week of politicking for the Alzheimer's Association.

The Sacramento trip went well. There were 1500 enthusiastic supporters of the Alzheimer's cause there and I think we made an impression. Still, politicians live in an isolated dream-land, making every issue black and white with black and white answers. They are experts at blowing smoke and we saw plenty of that yesterday.

All in all, it felt like a success. With California in deep debt, it's not easy getting them to stop cutting funds for the sick and poor. We gave it our best shot.

I came home exhausted. Walking had worn me out and my legs ached when I went to bed, but I slept well and I think I've bounce back pretty well.

We're hustling to get ready for our trip to Sacramento tomorrow. The Alzheimer's Association anticipates 1300 people gathering at the State House to lobby for funds for medical and social needs of patients and families. I'm supposed to give a 5 minute talk (ugh!) Might get to meet the 'governator' as well. Should be a busy-- and exhausting --day.

My life has suddenly become very hectic... meetings, doctor's appointments, talks, trips, etc. It's going to be this way for the next month or more. Oh well! Keeps me out of the pool hall.

Don and Jane made it safe to and from Kansas.  I was able to drive down from the city and have lunch with them both.  I can report to all of you they are looking well. 

Don is making great progress with his knee rehab, much faster recovery than was mine those years ago.  We had a great visit, didn't solve any of the world's problems but we gave some of them a good go. 

Jane's sister-in-law, Sonja, whose death brought them back to Kansas, was a special woman in our family's life.  When our Dad, Fred G, was dying back in 1974, Sonja was his CCU nurse and was a special presence for all of us in that difficult time.  She will be missed by her kids and her husband Bill, Jane's brother, and by all of us who were touched by her caring life.                                         

Spring has come, I predict, here in the heartland.   We are thankful.  From Kansas.     Jan

We're back from Kansas. It was rainy and cold. Sonya's funeral was a beautiful service. Many of her class mates who also attended school with Jane and I were there. That means we saw people we haven't seen for 50 years.

Towns in Kansas are in a constant state of survival. Parsons is no exception. Businesses have failed and the town has shrunk but it seems in a new state of renewal. Uptown is reviving and looks quite good.

Our flights were uneventful considering all the stranded people by American Airlines this past week. We flew US Airways.

What about them Jayhawks? Looking forward to Monday night and the final game.

Jane's brother's wife, Sonya, died last night. They live in Parsons, Kansas and it looks like we're in for a trip back to the memorial service. She hadn't been well for a long time and went through triple by-pass surgery last week.

When you get into your seventies, stuff happens. Now that most of our friends and family are in their 70's as well, it happens more frequently. My brother-in-law, Bill, is in poor health himself. He'll have a hard time taking care of himself.

We leave early Tuesday morning and will be back Saturday. I may get an entry or two in during the week.

In two weeks the Alzheimer's Associations of California are going to meet in Sacramento for a big blow out. It's a push to mobilize the legislature to fund programs for AD.

We did this last year but this time it's a whole bunch bigger. They are expecting 1300 people. There going to have a big program in front of the capital. They have asked me to speak for 5 minutes. I'm excited at the possibility.

Several notable people might be there, even the governor's wife, Maria Shriver. Alzheimer's has touched her family and she has been a spokesperson for the Association in the past.

I'm looking forward to putting my 2 cents in and I'll keep you posted on how it goes.

It has been a while since my last posting.  KU is in the final four so the 'ol bro is euphoric I am sure.  Some of us Hayen's have other leanings toward Wildcats or Gorillas (yes folks, there is a Kansas based university, Pittsburg State which claims the Gorilla as it's mascot.  Also happens to be my alma mater for whatever that is worth!)  Anyway I can't say much about K-State anything this year sports-wise.  So KU is my adopted team.  It is a good time to be a Kansan in the basketball world. 

Spring is trying to be sprung here in KC metro.  Easter is behind us so the preaching business is a bit more routine these days.  Sorry, Don that I don't have the dairy farm which also served as a "restructuring camp" for a nephew or two. Most of the guys were in pretty good shape when they showed up, so not much structuring was needed.  Don't know about the grandkid.  I do know that if brother Al was 50 again, and Cal was still with us, 'ol Justin would have learned about life and most likely would have made the curve.  I'm not sure where he's parked right now, but I do know it's up to him. Ain't nobody can do for him what he has to do for himself.

Everyone keep on.  Live each day to the fullest.  Take care until next time.

I can't help it. I'm a Jayhawk fan and I love their basketball team. They're playing today to get to the final eight of the NCAA tourney and I'll be glued to the TV.

I have two degrees from Kansas U.... a BA in 1955 and an MD in 1959. The pain and effort expended for those academic certificates, so precious and important back then, has mellowed with time. It is just another demonstration to me how important it is to enjoy the moment, even if there are struggles and pot holes in the road. I only get to live this day once; I must make the most of it.

My knees are getting stronger everyday. Still too wobbly to play golf but I'm going to the gym nearly every day. That helps. They have to get strong by the middle of May. That's when we go to Washington, DC to lobby and politic.

We had a conference call today about planning for the May meeting. The people at the national office of the Alzheimer's Association in Chicago said it was snowing there. Wow! It's sunny and in the 70's here. Why would you live where it snows in late March?

Well, I'll not starting that argument. People could retort that they wouldn't live where the hills burn every fall and slide into the valleys during the winter rains.

I should quit while I'm still ahead.

This morning my wife admonished me for my comments about Justin in yesterday's entry. I guess I did come down on him a bit hard but, damn it, everyone has been waiting for him to grow up and get going and he just rides along, quiet and happy as long as we don't ask him to do anything.

Anyway, he got home at 4 AM this morning; his plane delayed by fog at the airport. Jenny called and said he's grown several inches and looks like a man. We'll see him tomorrow.

The folks in Kansas did a sterling job taking care of Justin and we'll be forever indebted to them. Every kid has some problem to struggle with and to take on someone else's kid is asking a lot.

Well, we just found out today that Justin, my grandson who has been living with my nieces and nephews in Kansas, has worn out his welcome and is coming home... five weeks before the end of the school term. Ugh!

We all understand it here. Justin has a real maturity problems. He has to be led around by the nose, protesting at every step. A good example is; if someone is not home to force him out of bed in the morning, he won't get up for school. Who can put up with that?

So, he's flying home tonight. Jenni's really excited to see him but very disappointed he couldn't finish out the year. She has no idea what to do next. Any suggestions?

The Alzheimer's Association just released its new 2008 Facts and Figures. Every major news organization picked up the story but surprisingly, no one opened the 41 page document. On the cover was the only thing featured in their story... 10 million U.S. baby boomers will develop Alzheimer's disease.

None commented on the devastating effect on caregivers and families. None read the analysis of cost to taxpayers for the care of this tidal wave of patients. All seemed to focus on treatment which, at this moment, is virtually nil.

If the news organizations are that far adrift it is little wonder that our legislators are totally in the dark.

My daughter, Jenni, is not well. Her lupus is acting up and she's anemic. They discovered yesterday that she is bleeding into her bowel. She has cramping pain in her abdomen. It's a real worry.

She has no health insurance right now but her new job insurance kicks in on April 1. She has to wait until then to get any scans of her abdomen or bowel studies. Meanwhile, we wait.

It's time. National health insurance with total coverage is way overdue. Too many people are suffering.

Mona Johnson, another fellow traveler on the road to dementia, pointed out that having a depressing day is not all that unusual. To start with, one of the common symptoms of dementia is depression. On top of that, we all hit road bumps now and then and someone with AD is no different.

So I appreciate everyone's concern and comments but I'm writing about the trip. You have to take the bad with the good.

I'm walking without a cane now and the doctor gave me permission to start driving. I'm a free man! Not ready to play golf but that won't be far behind.

Working out at the gym and I over-did it yesterday. My legs were sore and stiff today. Need to be more careful about pushing it but want to build my strength back.

Sharon, one of my readers from Kansas, gave me her web site address. It worth taking a look.

www.simplesite.com/wingsofjoy

She's a good bit younger than me and has a tentative diagnosis of temporal-frontal lobe dementia; different then Alzheimer but similar. Her journal describes the struggle of dealing with the Kansas winter this past year. She moved there from Arkansas.

Take a look at it... I think you'll like it.

Wow! After an admonishment from my brother, Jan, and four of you readers, I need to watch what I say. I must have been in a funk when I wrote my last entry. I'd lamented over the lack of meaning in my blogging and wondered (out loud) if anyone cared.

No doubt it was a cry for attention and I got it. Fortunately, you sent back the right message. Stop bellyaching and get on with your life.

Well, today I have recovered from my sinking spell. It's a bright shiny day in San Marcos, California, I've been to the gym and I'm ready to capture the day. Thank you all for your encouraging words and Jan, smack me whenever I start whining again. Thanks.

Oh, Brother Don!  The woe is me which I read in your last posting is so similar to what I feel practically every week of my life: does any of this make any sense?  We sit and stare at the screen, wondering if there are words which will come which in any relevant way connect with those to whom we are writing or speaking?  So....do as little brother does: listen to the people.

As I read the responses to your latest wonderings, it would appear your original idea to provide a seat along side you as you took this "trip" is still right on!  First of all you do have something to say which others need to hear.  Secondly, you still have so much going on in a creative way inside that old skull of yours, you have to let it out!  Thirdly, Sharon from Kansas is right to remind you, this writing is part of the creative stimulus which does keep the  mental motor running. 

In other words, the "people" have spoken!  Keep it up until the last drop is squeezed out of you.  You know writing better than I do.  And is it not true, the task is painful and sometimes barren and dry?  And yeah, you do need to get back "out there" when you're ready and able.  Until then, kick it in gear and keep posting.  You are the only one who can say what you have to say. 

From Kansas and a preacher who has to figure out what to say in three days from now.
And, this morning, it ain't lookin' good.  But it will happen.  Jan 

As I look back over the many entries in this blog, I wonder if it is any use. Much of what I've written over this past 3 years are personal meanderings, meaningless to anyone but my own ego. Readers; how can you put up with it?

I sit down and bring up the "New Entry" page and stare at it. It's intimidating; so little to say and so much space. I fret about my original purpose... to share a trip that may or not be communicable. When the time comes that I get so forgetful that I can't remember what day it is, what will I say?

Maybe I've already reached that point. I notice I spend a lot more on personal subjects, like my knee surgery. I need to get out of the house and back into the real world.

A friend asked me as a guest to a lunch at Rotary club today. The speaker was Randy Jones, a well known Padres pitcher back in the 1980s. He arrived in an old baseball cap with sunglasses perched on the brim, an open necked flannel shirt and worn jeans.  He looked like a trucker who had just got off the road.

But, he was comfortable and gave a great talk; very casual with no notes. Lots of anecdotes and tales about baseball and the team. He assured us that steroids was a thing of the past but couldn't promise what players might be found to abuse in the future.

Randy now lives in inland north San Diego County and owns a company that sells his own brand of bar-BQ sauce.

Researchers reported in the Proceedings of the National Academy of Sciences (Vol. 103, pg 13203) that they have identified chemical changes that occur in AD but not in other forms of dementia. The specific chemical, detected in both brain and skin cells of AD patients, opens the door for a possible simple skin test for Alzheimer's.

If such a test is eventually developed, it could be administered on an outpatient basis in a clinic or physician's office. This adds another tool to the variety of procedures that will one day lead to early and absolute diagnosis of Alzheimer's.  

I started to vent about the diagnosis and treatment of Alzheimer's ... again. I just erased it and started over. No need to beat that dog again... he's not going to roll over.

My knees have kept me inside so I have little to write about. I don't even know if it's cold outside. Looks sunny and nice. Maybe I should take a walk. 

I'm sure this seclusion and boredom is going to force me to get back to walking; new knees or not. My schedule begins to ramp up this month so I have no choice. 

A friend passed along an article that came out of the current Journal of the American Geriatrics Society. In their study, they followed 90 individuals and their caregivers seen at the Alzheimer's Disease Research Center at Washington University in St. Louis. "The major finding is that both patients and families feel relief, not increased anxiety, upon learning the diagnosis," said study co-author John C. Morris, M.D.

This study confirms something I already believe from my own experience and that of many of my colleagues with early Alzheimer's. We have been liberated by the diagnosis and empowered to act and speak on behalf of those unable to do so. We can stand before politicians, skeptics and naysayers and say, " Look at me. I'm melting before your eyes and you can do something about this. Now, it is time to take action."

Don's entry reminding us all of Jane's huge role in keeping the old Doc in order and on target brings me to this comment, which may be a rerun of earlier thoughts on the matter of our spouses/caregivers in this life.  I know many of you who read this have this sometimes difficult and always essential role of supporting/caring for those of us who require such care.  Of course this is a shared role: don't we all grow to a huge dependence on our significant other as we share this life. And if your or I are single persons, do we not find those persons/groups upon whom we can depend?  Don's word to us is a reminder of how our living is predicated on sharing this life with the other.

As I may have said before, Don and Jane have been special people in my life: benefactors who enabled me to complete my undergraduate work without any debt being incurred on my part.  And, they have been so important to Connie and me as we have lived these 42 years together.  We've shared many good times with their family over these years.  It has been good.

Finally, I share this theory on my male siblings (6 of us Hayen boys).  We have had success in marriage if we were wise enough to marry women who are strong and who can face life with us even if it includes AD.  We guys are not easy to live with in any case.  We are rather complex, sometimes depressed, always somewhat unsettled in our journey.  It does take a strong and dedicated woman, someone who comes to love us very much (for some reason or other!) in the face of the thick or thin of it.  Jane is such a woman.  My wife Connie is another.  God Bless them, and Thanks to them.  As the 'ol bro said in so many words: he (nor I) could not get through this journey without them.  From Kansas. Jan