I don't want to be the oldest generation

As the new year begins, I find myself not with feelings of anticipation, but of dread.  My dad has always been the person I most look up to.  I've asked him advice on home improvement, managing people, parenting.  I'd like to ask him relationship advice right now.  I've mentioned before the one fight I heard my parents have when I was about in 6th grade.  My Mom was always the social butterfly, needing to be with lots of other people, liking to be the center of attention.  My dad, on the other hand, was quiet and a true introvert.  He finds himself when he is working in his shop.  Even though I'm over 50 years old, I'd like to call and talk with him about how you make such a situation work, for my own life.  They obviously did.

But I can't bring myself to burden him with one more thing.  Already I miss being able to go to him.  The Christmas gift deal was a real eye opener that he is just making it with what he already has on his plate.  I remember when my maternal grandfather died.  I thought to myself at the time, how hard that must be for my mom to now be the oldest generation.  The source of wisdom and strength, who other people must rely on.  I don't want to be the oldest generation.  I want my dad to be there.  I've known for awhile that mom was not in that position any more because of the dementia.  I need to be a source of strength now for my dad, not the other way around.

One of my earliest memories was when I had a bad dream one night.  It was less than 5 years old because I remember the bedroom I had at the time.  My dad came to see what was the matter.  I told him I had a dream that he had died.  He reassured me that it would be a long time before that would happen.  I still hope that is a long time in coming.  But already I miss my dad.  I'm not equipped to be the oldest generation.  I don't want to be the oldest generation yet.

Great Information

I was lacking 3 continuing education hours for my assisted living administrators license renewal.  So Friday afternoon, I came home early and got on the computer to do an online class through Easy CEU.com.  What a great resource!  There were 3 different classes by Jolene Brackey.  I've mentioned her before as the author of the book "Creating Moments of Joy".  I have never been able to hear her speak in person, so the online video module was very inspiring.  I chose to do the class called "Creating a Safe Haven".  It was a class designed for people that are thinking about building or creating a Memory care facility.  But so many of the tips she mentioned have application for those caring for someone at home as well.  Little things like dark colors are seen as holes, especially in flooring.  If you have walls painted a light color in the bathroom, the fixtures blend in.  Way too many ideas for me to relate here, but it is a reminder about the many resources that are available now.

As a facility person, her insights do seem to point out that there are many things you can do in a facility that you can't do at home.  Certainly there is the social aspect of a facility.  She says that folks with dementia do better in a setting with others with dementia.  I can see that as the disease progresses.  But in my experience, early in the disease, they function well with other seniors that have more physical, medical issues.  I heartily agree that a small setting is best for those with dementia.  The large, hotel type setting of many assisted living and independent living communities would be overwhelming.  Creating a space to walk (some label it as wandering), both outside and indoors certainly is easier to create in a facility setting.  Having lots of pockets, cabinets, drawers of "stuff" to keep people engaged would seem to be more easily done in a facility that at home.  The idea of camouflaging areas you don't want them to use would seem to be easier to do in a facility as well.

She references a couple other resources as well.  Elizabeth Brawley has written a book (quite expensive) about designing for dementia.  I'm pretty sure my boss bought that when they were looking into creating a memory care building.  She also suggests reading the book "My Journey into Alzheimer's Disease" by Robert Davis.  If I wasn't trying to put myself on a book diet, I would have that in my cart at Amazon.com already.
It is refreshing to hear someone with such insight and a love for people with dementia give ideas.  It is inspiring for me as well to try to share some of those ideas with the support group.  We all need some refreshment at times.  How thankful I am for a boss that supports my learning.  I just hope it will help me to help others in their own journey.

A Measure of the Progression

I had a dramatic example this week of just how different things are now with my mother's memory loss.  She was not Martha Stewart when we were young, but close when it came to Christmas.  All through the year she would shop to find just the right present for everyone.  It might not cost a lot of money, but it was perfect for that person.  She taught us that it really is the thought that counts. Giving money was forbidden.  That showed a lack of personal involvement and care for the person.   Presents were wrapped with coordinating paper and bows and every year there was an ornament on one package that went with the theme and was collectable.  One of my favorite traditions from when I was a child was the purchase or creation of one ornament every year for each one of the kids that symbolized something for that year.  One year, it was a piano.  The year my oldest turned 16, he got a matchbox car ornament.  Then when each of the 3 of us, and now my own children, leave home, we took our special ornaments with us to start our own homes.

So I was quite surprised with the package I received in the mail this week.  I knew they were working on our Christmas package because Mom told me so in our weekly phone call last Sunday.  I'm pretty sure our package to them arrived a day or two before which is what spurred them on.  Forgetting special events was one of the signs when I knew something was wrong with Mom (she forgot the birthday of one of her 2 grandchildren, yet remembered my husband's birthday 2 days before).  This year, I called on my youngest brother's birthday to give a gentle reminder.  I think Dad just has too much on his plate and he had forgotten.  So I wasn't surprised about the kind of last minute aspect of the gifts (which was also unusual).  Then I opened the package.  My parents have always been bad about using boxes that are really not big enough and just covering them in so much tape, they make it through.  But when I opened the outer box, I found a box of Hickory Farm candy that came ready wrapped with a bow.  Then there was the box with a electric coffee mug for your car.  It was not wrapped and had a gift tag slapped on it.  Now lest you think I am disappointed by the gift, I honestly could care less about getting any kind of present.  It was just an example of how different things are now.

When I got dressed for work yesterday morning I put on a top that I realized was the last personalized gift I will ever get from my mother.  I can't remember if it was last year or the year before.  Then last night I talked to my middle brother.  Guess what he got for Christmas?  He got a box of Hickory Farms and a car plug in coffee mug.  Again, I don't care about the present itself.  But it says to me that Dad really has too much to do.  And I don't think he realizes it's not going to be short term and its not going to get better.  No wonder people get depressed at the holidays.

Sexuality and Dementia

I have been dealing with a new and difficult situation at work.  I have a male resident with early dementia who continues to suffer with grief and the loss of his wife 5 or 6 years ago.  In my non-clinical estimation, he is looking to fill the hole of his grief with another relationship with a woman.  His history from before he moved in with us seems to confirm my theory.  He has focused on one of my female residents who also has early to moderate dementia.  So even if she were interested in returning the emotion, the competency to make such a decision is questionable at best.

The male resident continues to pursue the female resident and just will not leave her alone even after multiple discussions with he and his family.  I had no choice but to give him notice that he must move out.  This situation has been such a challenge in many ways.  No child wants to think about their parents and their sexual needs or even admit they exist.  But when you look at Maslow's hierarchy of needs, those needs for love are very basic.  Not to mention as adults with long time life experience, expressing these needs are something that resides in the long term memory part of the brain.  The reasoning and decision making part of the brain is compromised early in the diagnosis.  It doesn't help that there are so many stereotypes to counter in this kind of situation.

I truly believe and have talked with the man's family that this behavior does not make him a dirty old man.  I really believe his decision making abilities are so compromised and his emotional need for love so great that he really can't help himself.  Again the difficulty comes with a dementia diagnosis because you look at the individual and they don't appear to have any physical symptoms.  It is the behavioral symptoms that let you know there is a problem and it's hard to separate the behavior from the person.  His family is embarrassed and upset by his behavior.  In part, I'm sure my giving notice seems like a punishment for his behavior, but there really is no other way to ensure my female resident's safety.  I also think if it weren't this female, it would be another because his need is so strong.

The family of the female resident doesn't get off easy either.  They also see the behavior and wonder if their mother had been in some way leading the gentleman on or if in her younger days she was a "loose woman".  No matter what the specific situations, it is so difficult for families as the person they once knew becomes farther and farther away and they are left with someone they don't recognize any more.

Education of staff who are minimally trained is another hurdle.  I am fortunate that most of my staff have been with me for several years and are pretty well experienced with the symptoms of dementia and what happens to people as they decline when it comes to memory and bodily functions.  The aspect of sexuality seems to set everyone back a step or two as cultural expectations and stereotypes come to the forefront in situations we don't experience very often and a situation where as humans we feel the need to protect the person we see as more vulnerable.

As with every situation I experience at work, I now look at it from how I would see things as a family member.  I know my mother enjoys attention.  I still remember one particularly traumatic situation when I was a child and my parents had a fight about my mother flirting with other men at a party.  Knowing how basic the need for love is and knowing my mother, I have no doubt if she were in a similar situation, she would enjoy the attention.  Does putting myself in the place of my family's make me better at my job or does it make me less objective and compromise my ability to do my job?  I know God has placed me in this position to care for his children.  I just pray He will give me the insight to do what is right by my residents and their families.

Finding the Balance between Safety and Self Esteem

It is 10 am the morning after Thanksgiving.  Although I worked Thanksgiving day, there is still a lot to catch up on after a day off in the middle of the week.  Not only that, but I have a water heater out on one hall.  And then my cell phone rings.  It is mom.  I can tell something has happened.  That is usually what precipitates a call during the middle of the day in the middle of the week.  She starts talking about how she is not an imbecile and people keep treating her like she is.  I have the maintenance supervisor standing at my door.  What a great deal to be a working woman.  I used to feel torn between my job and taking care of my children.  Now I feel torn between my job and being there for my mother.  I think I've mentioned before, but my boss is really great about me talking to my mom when she calls.  My boss is one step ahead of me in every respect, mothering, career and having a mother with dementia.  Her mother has now progressed to needing to be in a skilled facility.  I know she would love for her mother to still be able to pick up the phone and call.  So it's not that pressure.  Yet there is the maintenance supervisor and hot water is pretty important to my residents.  I have to hand up and call again.  Yet I know I may never really figure out what happened if I hang up now.  But hand up, I do, and call back again just before lunch.  I get the answering machine.

On my way home from work, I call back.  Whatever happened this morning is no longer pressing.  Reading between the lines, I can figure out that dad has gotten frustrated about something.  She does not recognize any kind of impairment at this time.  She talks about "the stroke".  I usually focus on that as well because it is concrete subject she can understand.  I know there were symptoms of memory loss 2 years before the stroke.  But at this point I don't think it really matters what we call it.  Her brain has problems.  She can understand a stroke impairs that brain.  We have the same conversations again, I had as good a job as your dad and made as much money, the doctor said I shouldn't drive but I still have my license, people don't talk to me now, they only talk to your dad.

I have to admit, even though I deal with this 8 hours a day at work, it takes a lot of deep breathing to listen over and over again with my mother.  I really don't know how caregivers in the home do it 24 hours a day, 7 days a week.  I am frequently coaching staff on how to make sure residents have their needs met, yet being respectful and treating them like adults.  I also know my dad and patience has never really been his strong suit.  Combine that with my mother's long standing need to be the center of attention and now she can't remember that just 5 minutes ago, he was there with her doing whatever.  And then there is her long standing personality trait of obsessing about things.  The memory loss has just compounded that trait (and I am finding I have inherited that trait myself).

I hope all of this will make me a better facilitator of the Caregiver Support Group.  Although I am the "professional", I am realizing more than ever that I really don't have all the answers.  Will that be discouraging for caregivers at the group?  I hope not.  How do you mitigate the feelings of inferiority because of someone else having to make decisions and do the daily tasks?  I don't know.  I do know my dad has to be able to work in his workshop in order to deal with his stress.  I'm glad my mom is at a place where she is ok in the house by herself.  This is sometimes more discouraging for me than encouraging as I realize I have many more questions than answers.  Which brings me back to the whole point of this blog.  No matter how many years of professional experience, when it is personal, it is a whole new ball game.

Unfortunate stigma of psychiatrists

I find over and over again how helpful a good psychiatrist can be when trying to manage some of the negative behaviors that can show up when someone develops dementia.  I worked in geriatric mental health for 7 years and found that all these years later, there continues to be the stigma attached to anything mental health.  So many still believe anything mental health related is a matter of will power, especially those of the older generation who are now the prime age for developing dementia.

One of my residents with early dementia has been plagued by an underlying low level of agitation all the time.  Not only does this disrupt his relationships with residents and staff at the assisted living and his family members, but it has got to be distressing for him as well.  Fortunately, he has a wonderful family who is willing to seek out whatever help they can find.  Their situation reminds me how important personal choice and relationship is in any physician relationship.  They did not click with my favorite geriatric psychiatrist.  But they did try a couple and find one that both the resident and family members feel a better connection with.  I know with my mother, she was okay with the psychiatrist, although he made what she felt like was a criticizing comment.  My dad, on the other hand, felt like he was arrogant.  In my parents case, the psychiatrist made medication recommendations which the primary care physician not prescribes and follows.  Given their feelings about him and their positive relationship with the primary care physician, this is probably the best case scenario for them.  On the other hand, I have seen first hand a number of primary care physicians who are not specialists with psychiatric medications, much less the issues that effect the elderly, who really just blunder about with medications.  A specialist would be much more effective.

Not that I advocate "drugging" people up.  The most recent research verifies that the best approaches to manage typical dementia behaviors are lifestyle  and environmental changes.  I think anyone would agree that non medication changes are always the best first course.  However, I have also seen how effective a simple mood stabilizing medication can be in giving people a better quality of life.

One of the very positive outcomes I have seen with the Caregiver Support Group is the advocacy by family members for seeking out a psychiatrist for the treatment team.  A big thank you for the psychiatrists out there who seek to stay at the forefront of research on medications for seniors and seniors with Alzheimer's and dementia.  Even after all these years of trying to destigmatize mental health, I guess family members with positive experiences are still the best support for other caregivers struggling to find the best quality of life for their loved ones.

Should- the most destructive word in the English language

I have frequently felt "beat up" by the word "should" in my adult life.  I should do more for my children.  I should put in more time at work.  I should put aside my own interests to support those of my husband, my children, my friends.  I'm sure I will continue to wrestle with realistic and unrealistic expectations of myself.  But I hate to see what that word can do to others.

I know my dad is not considering moving because he thinks he should be able to provide 100% of the care for my mom for ever.  And I know he feels that he shouldn't burden me or my brothers and our lives to help.  It doesn't matter that we would gladly be willing to be a part of the caregiving team.  I don't know that any of us will ever be able to make him see that.  That expectation is so firmly entrenched in his mind.

Then this week that word attacked again.  We had our monthly caregiver support group meeting.  One of the caregivers that is a role model for caregivers everywhere revealed her "should".  This woman has been caring for her husband since his diagnosis in 2007.  She does get sitters to give her 2 days off during the week to run errands and have time with her friends.  But other than those limited hours, she is providing 100% of his care 24 hours a day.  Not only that but with an unbelievable attitude.  So at the support group meeting she says she feels like she should still be taking her husband to church.  She doesn't because the effort involved to get him ready and there has become monumental.  And again, she could be a role model for other caregivers, yet she beats herself up because she thinks she should still be doing more.

Maybe this has given me an idea for the next caregiver support group.  Maybe we should talk about all those "shoulds" that are so damaging to people.  It is one thing to deal with it myself.  But it truly breaks my heart to see someone who could be caregiver of the year, still feel they aren't doing enough.  I pray that in the next couple weeks, God will reveal what I can do to help caregiver's not be so hard on themselves.

Once again my Role Model

Of course as children, we are usually looking up to our parents as role models throughout our lives.  One might think that as an illness such as Alzheimer's takes its effects, the opportunities for a parent to continue to be a role model lessen.  Not true if you are honest with yourself.

I have been a worrier for years.  I don't know how many years.  I worried about my husband being killed as he served in the Army.  I worried about my children, their health, their welfare, their friends, their religious training.  A couple years ago, I had a resident who was also a worrier.  I told her I was just like she was, if we didn't have something to worry about, we would find something.  So when my husband suggested taking yoga a couple months ago, I was interested in not just the exercise component, but the stress management and mindfulness aspect of it.  I love the focus on the here and now, the focus on the breathing.  But to be honest, I really have to work hard to stay in the moment.  As I wrote in an earlier post, I am always focused so far into the future, I miss out on the here and now.

So today in our weekly phone chat, I was stuck by how completely content and in the moment my mother is right now.  There are still the rehashing of her work career, probably 3 to 4 times during each weekly phone call.  And I do hear about the here and now probably 3 times a call as well.  But it is amazing how completely at peace and content she is with her cats and my dad.  There is a goal I would like to set for myself.  I am always looking at books that have the titles about "living simply", "slow down", "live in the moment".  I don't have to buy any books on the subject.  I have an example to follow right in front of me.

I'm so thankful to recognize the abilities still there and the opportunity for me to continue to learn from her.  I hope I can continue to plan for the needs she and my dad will have in the future, but to keep my focus on the here and now, to enjoy the present and not miss out.

Stress of Caregiving Up Close and Personal

I have read the statistics on the Alzheimer's Association website about how spouse caregivers especially have health issues develop correlated with their caregiving.  Of course it is difficult to say, spouses are also elderly and may have developed health problems anyway.  But I have seen 2 examples this past week.  The very first 2 members of the caregiver support group when it started 5 years ago have both now developed health problems themselves.  Both are the wives of men with dementia.  One has been caring for her husband in some capacity since 2007.  The other I know has been dealing with dementia for 5 years because she came to the first caregiver support group meeting.  They are both fairly young women, in their early 70's and were previously in pretty good health.  One has had a stroke in the last couple months.  She came to tour the assisted living for herself.  I think her stroke was a scare for the children and they are looking at options for the future.  The other will be having a heart procedure done in the next couple weeks because she has developed arythmia.

Both women have fair support systems.  Both have at least one child that provides some assistance and both have children who are long distance and unable to help.  Both have financial means for respite and other help.  Yet you can see that the day after day after day stress does accumulate.  Everyone is seems to be so down on facilities.  Yet here is the very reason why facility placement can be the best decision.  I have fresh, rested staff coming in every 8 hours.  I am fortunate to have very good staff.  One good thing about the horrible economy is that it is an employers market right now.  I know it is much more flashy and newsworthy to show the tiny percentage of facilities that are not doing a good job.  But is it really in the best interest of both parents for the person with dementia to always stay in the home?  I know some families have many more resources, children who are willing to not work and take shifts caring for the parent, money to hire sitters round the clock so everyone can sleep.  But not everyone has those resources.  And there are plenty of situations where there aren't the financial resources to pay for assisted living either and families have no other choice.

In all of this, I wish there was a way to show my dad the cumulative effects of caregiving over the long haul and convince him they need to move closer to me.  I am thinking now, I may have the 1 caregiver that I'm closest to talk to Dad if they come for Christmas.  I was having a hard time figuring out the logistics of getting my parents here safely.  My husband is a saint and offered to drive to get them and bring them here.  Dad feels he is perfectly fine to make the 12 hour drive on his own.  That part I guess we will play by ear.  But assuming my friend makes it through her heart procedure safely, I hope I can get my Dad to talk with her about the realities of long term caregiving.  In the meantime, I will pray for a safe and successful procedure for my friend.

Is it Enabling or just the Right Thing to Do

Our youngest son lives out of state and is going through some tough personal times right now.  Because of this, I have been thinking about getting him home for the holidays.  Naturally when I think about the holidays, I thought how great it would be to also have my parents here.  My boys are their only grandchildren.  My thoughts about special times like the holidays frequently include the consideration that between my parents ages and my mom's dementia, this may be the last time for... fill in the blank.  Two years ago they came for Thanksgiving and I said then I would never have them drive this far again.  It is a 12 hour drive from their house to mine.  We can do it in 1 day, but it takes them 2.  Dad is the only one that can drive, so it is too much now.  When we had vacation this summer, my youngest brother was able to pick my parents up and drive them the 6 hours to the vacation destination.

Whenever I'm contemplating something with my parents these days, I e-mail my brothers to get their perspective.  It is nice just to be able to have validation and another point of view.  The longer I work in long term care, the more I realize how lucky I am to have both brothers involved.  My youngest brother pointed out a perspective that I had not thought about before and now I'm trying to figure out what to do.  All 3 of us have talked with our parents about moving closer to one of us.  Right now, they live 6 hours from my youngest brother, 12 hours from me and about 15 hours from the middle brother.  When they retired, we were still traveling with the military and both my brothers were pretty new in their careers with the potential to move. So my parents moved back to Missouri to be close to the then 5 brothers and sisters of my dad who were still living.  It made sense then.  As they have gotten older and my family and my brothers more settled, we have been talking to them about choosing one location, no-one cares which, and living where one of us would be available to help.  My dad is fiercely independent so he does not see the need and has been pretty adamant that they able to take care of themselves where they are.

So my original proposition I ran past my brothers was I would fly my son to the airport close to my parents and he could drive them here for the holidays.  Of course that makes 6 days of travel for him.  The advice my youngest brother gave me really gave me some food for thought.  He feels like our parents choose to live far away from all of the children and one of the consequences of that decision is that we are not able to get together for the holidays and they will then be alone.  If I jump through hoops and commit my son to a large part of his vacation getting them here, then I am enabling them to continue in a situation that will at some point result in a huge mess.  The plan right now per my dad is for them to remain by themselves where they are until the sh... hits the fan and then I guess the expectation that one of us will come to the rescue.  Since the youngest is the closest, I'm sure he feels the pressure that it would be him that would have to respond.  Yet due to the current economy, his job situation is the least stable and he is the least likely to be able to have time to respond.

But another part of me, the guilty female part, remembers what I tell all my resident families.  We all know there will be a time when this ends and our parents will pass away.  When that happens and you look back on what you have done, will you feel like you did all you should have or needed to do?  I don't think I would in this case.  I keep thinking, it could be my dad's last holidays.  The statistics show that a huge percentage of spouses that are caregivers die before their loved ones that have dementia.  In fact, one of the caregivers from the support group is now having heart problems.  She has been caring for her husband since 2007.  What a conundrum with no right or wrong answer.

Promising New Therapeutic Approach

Keeping up with new research on Alzheimer's Disease is nearly impossible unless you don't have anything else to do.  How on earth are caregivers supposed to keep up, much less care for their loved ones.  I know the Alzheimer's Association does a good job of trying to keep reputable news updates on it's website.  I am thankful that I am able to get concise updated information because of my job.  This week I got a long term care publication in the mail that talked about a promising new approach for individuals with dementia.  It is called the SAIDO approach.  So far in the US, there is only one certified program, the Eliza Jennings Center in Ohio.  This organization sent staff members to Japan to train with professionals there who have been using this approach for several years now.  According to the Japanese data, it has proven to have a significant improvement in functioning ability for the individuals who participate.  I would recommend googling to find precise description of the program.

My understanding is the program encourages engagement of the prefrontal cortex of the brain using various verbal and math activities.  A major component of the approach is the use of staff members as coaches and cheerleaders, providing encouragement and positive feedback.  Although certainly not scientific, there are elements of this approach that resonate with me based on conversations with my mother.  She is disturbed that people no longer talk to her, but everything is directed at my Dad.  Congratulations to the psychiatrist who did her testing whose comment "You used to be smart" is one memory that has been well retained by my mother.  I understand that people know if the information is going to be retained, it has to be delivered to my Dad, but at the same time, this marginalizes my mother as a person.  Psychology and mental health has always been an interest for me and I have to wonder how much of the success of this program is due to the intense involvement of the staff members.  I can see how just from a quality of life standpoint the positive encouragement must be a significant part of this approach.

Since I am involved in practical application, not scientific research, I don't really care about how it works or whether it is statistically significant.  Sure if I thought our company were going to invest significant dollars to become certified or develop this approach as part of our care program, I would want to be sure it was not just another one of those fad approaches.  If we were a facility that was going to include this approach in marketing materials, you would want to have concrete data.  But it seems to me to be a ray of hope for those every day caregivers.  Finding verbal and math activities to give to individuals, especially since there are really no "right" answers, seems to be something that could be done by regular people.  Refocusing your attention on "cheering" or encouraging your loved one is something else that with practice and focus regular people could also implement.  What a great opportunity for intergenerational interaction.  Whether it is statistically significant or not, when I look at the faces of residents when they are interacting with children and young people, I know that in terms of quality of life, intergenerational is a good thing.

So Kudos to the company that has invested in this new approach.  I wish them well not only in the care they provide in their own facilities but in their commitment to train others in this approach.  And I hope elements of this approach can be used by regular caregivers to give them another tool and a hope, if not for actual improved functioning, but at least opportunities for moments of joy during each day.

Work with a Purpose

This week I had a call from another former family member.  This resident moved out to another facility that was closer to his family member.  Even though he has not been a resident in my facility for about 6 months now, I still get phone calls from his family member from time to time.  I am so thankful for so many things related to these phone calls.  I am thankful that our facility is only 16 beds so that I have the time to spend talking to previous family members.  I'm also thankful that with 16 beds, it allows me to develop true relationships with family members.  I am thankful that family members feel I have help worth sharing and they still call me from time to time.

My oldest son has finally realized he will need to go back and get his college degree in order to get a good job.  Right now, he is trying to decide what he wants for his major.  As so often happens, we have examples of various possible scenarios for him to help make his decision right in our family.  I have one brother that has a job that does well to pay his bills.  However, it is not really something he enjoys, it really is a "job" for him.  My other brother has a job he loves and he feels he is really helping others, but he is not going to get rich.  I am pretty much in the same boat with that brother.  I get paid a good salary and I am thankful for the owners of our facilities that I can work for a family who does things for the right reasons.  I am very thankful that at the end of the week anyway, maybe not every day, I know I am able to do small things that make my little corner of the world a better place.

I tell people all the time I am learning about wisdom.  You can have lots of knowledge, but with age comes wisdom, realizing what is really important.  I hope my son can find a job that he loves as much as I love my job.  Knowing I'm able to help people has always been important to me.  There are some days that I think helping other families distracts me from thinking too much about my own family and the road we are traveling.  At the same time, my experience with others, I hope, will help our family make the best of a very difficult situation.  To look back at the end of a day, a week, a resident's funeral and know I have made a difference, there is nothing more important and nothing more fulfilling.  I thank God for giving me the skills and abilities I have and the opportunity to serve others.

Getting Too Far Ahead of Myself

Yesterday, the family of my resident that recently had to move to a specialty care assisted living stopped by to thank us for the care we provided and tell us how she is doing in her new home.  By the time she left us, she was the lowest functioning resident and that fact really stood out.  Her family talked about how at the specialty care facility, all the residents have similar needs and function at a similar level.   "They are all like babies", was the description.  I could see the loss in their eyes and it reminded me of what I have to face in the future.

I have always been terrible about rushing through, trying to get to the end of the journey.  During school, I wanted to hurry up and graduate and get a job.  When my children were little, I wanted them to grow up.  I realized when the youngest graduated, how I had wasted their youth being in a hurry.  I still have regret that I did not slow down and enjoy the journey with them more.  Now I find myself in a similar situation.  I know better than anyone else in my family what is coming.  I have watched the progression of the illness in strangers for 30 years.  I could easily become overwhelmed with loss at this point.  Like with my children, I could become so focused on the end of the journey that I miss out on what is still available.

I believe God places events and situations in our lives to allow us to grow step by step.  I am still trying to forgive myself for wasting my children's youth, being in a hurry.  Yet I hope that experience can be a lesson and reminder to me in this situation.  Let me take advantage of what abilities and the relationship that is still here.  The time will come soon enough to face the losses, but let me not get so far ahead in the future that I miss the present.  What a blessing it is to be human and to be able to learn from our mistakes so as not to repeat them.  Thank God for His guidance and teaching.

More on the "Sandwich Generation"

I've spent this week sharing an agonizing review with a family member, "did I do the right thing?"  It is so easy for people on the outside to point fingers and say the children are just trying to get the money.  I know that is a reality in some cases.  Fortunately in assisted living, I don't run into those families very often at all.  Those families aren't interested in spending mama's money on her care.  They are more likely to try to put in minimal supports to keep mama at home and keep the main asset, the house, intact.

If "those people" would only stop and think for a moment about what the family actually chooses to take on with trying to make sure their parent has their needs met, whether at home or in a facility.  Fact of life, it is usually the daughter that takes on the main caregiving responsibility.  And by virtue of life span factors, the daughter is middle aged.  In today's world, that person is usually working, may still have her own children at home, may have grandchildren, may be fortunate enough to have a marriage or other significant relationship themselves.  If you think just in terms of personal energy available, the selfish person would say "forget it".  It would be far easier to live in denial and let mom or dad stay home by themselves like they usually want.  Who wants to take on the additional tasks of being responsible for yet another life?

And it is to common for us as women to always feel guilty.  We wonder if we do enough for our children.  We second guess making tough decisions for our parents well being.  Those people who say the kids are in it for the money have never really thought through what you take on when you are caregiving for your parent as well as your own family.  I don't know if I was any help at all for this family member.  I know I believe strongly one of the most important things I can do is to encourage family members.  And I hope I am still professional when I acknowledge from experience that it is really, really difficult.  As happens so often these days in our society, the minority of people who are doing the wrong thing, lead others to expect that worst from the majority that are trying to do the right thing.  It is a rough journey and we all need to be kinder and more supportive of each other along the way.

Snapped

Now I've done it.  I lost my cool and joined the ranks of the frustrated family members.  I called to tell my parents that my son is getting divorced.  My heart is breaking for my child and he is so far away I can't do much but pray.  Then there was the "great" experience with my boss last week, plus I am going to go see my OB/GYN about mood swings I think are related to menopause.  So I get on the phone and Mom starts her tirade of poor pitiful me, no-one pays attention to me, I don't have anything to wear, your father always gets everything and all the money.  I was really not in the mood to hear it all again and again, so I asked to talk to Dad.  Well that sent her even further over the edge, everyone wants to talk to your dad, no-one will talk to me.  And I did it, I lost my temper and just dropped the bomb about my son and his wife in a not so kind tone of voice.

So she does put my dad on the phone and he says, "now you know what I deal with all the time".  At least that gave me the opportunity to talk with him about how I worry about his health because of what he has to deal with.  And I do worry about him.  He is not one for a lot of patience to begin with.  He is a good man, but the over and over again has got to be wearing.  Mom has always been pretty self-absorbed.  But at least in the past she had the social skills to at least pretend interest in other people.  That is gone now.  Maybe God gives hearing loss as a gift to some people like my dad.  I know on less stressful days when I call, there are times I am really paying attention to something else while she talks and I interject a "uh-huh or oh really" and she just keeps talking.

How do I try to give advice to other care-givers when I blow it myself?  I remember reading a verse in the Bible, but can't find it exactly now, about how God gives us trials and temptations in order for us to understand and help others in similar situations.  If I can lose it 800 miles away, I just can't imagine dealing with it 24/7.  I have offered for Mom & Dad to come here and live.  Part of me is glad for now they have declined.  It would be tremendously stressful.  Ever the learning from experience, what do I learn from this experience?  Give people a break?  Remind caregivers they have to take care of themselves and deal with their stress?  At least I have realized I need to talk to my doctor (take the same advice I give my residents and families all the time).  I think it is all part of gaining wisdom as you age, realizing how little you really know and remembering to give grace to others as you would have them give to you.

True Understanding of the Sandwich generation

This week, its' not about either residents or my mom.  Years ago when I worked for the mental health center, I did presentations on coping with the stress of the "Sandwich Generation", those who were taking care of children and parents.  Conceptually, I thought I really understood the issue.  After all, I had children in elementary school, so I was tired all the time.  And I could understand how that stress plus dealing with aging parents would just compound.  But I really didn't understand.  It is truly one of those things you have to experience in order to understand.  No wonder the model for most support groups is that they be led by people who have experienced the situation themselves, whether it is substance abuse, domestic violence, or caregiving.

The week started with a letter from my dad to each of the 3 children.  He wrote about how proud he was of us and our relationship.  He ended the letter with the phrase, we are losing a bit of your mother every day.  It was a tear-jerker for sure.  Then as the week wore on, I learned my son will be getting divorced.  I am learning that coping with the sleep deprivation when they are young is not nearly as stressful as watching them as adults experience their own pain and not being able to do anything but pray.  It doesn't help that he is 1000 miles away from home.  Then the week ended with stress from the boss.  The Bible says there is the power of life and death in the tongue and my boss is the perfect example of that.  Everyone knows she says what is on her mind before thinking it through.  My leadership style is to try to motivate through positive encouragement and err on the side of retraining.  I know it is not always effective.  People don't realize they have been reprimanded sometimes, which isn't very effective.  And I know our philosophy should be continuous quality improvement, always looking to improve.  I think there is a big difference between always finding something wrong and looking to always improve.  So the boss comes to visit on Friday and as always, there is something she finds wrong and doesn't not hesitate in expressing it is a way that is, I think, not motivating but deflating.  I know my capacity to cope was impaired because of the events in my personal life.  But it was just the icing on the cake for the week.  Thank God she came on Friday and I could go home and cocoon and try to recharge.

One of my support group members was telling me this week that she had to go see the doctor herself for symptoms of atrial fib.  No wonder.  Her husband has taken another step down in the progression of dementia.  Her son is losing his job.  It is not wonder the stress is getting to her.  How is it possible to cope with the on-going stress on every front?  I just came back from vacation, yet I need a break somehow.  And my parents are miles away and mom isn't very far down the road yet.  I better figure out how to cope with stress or I am going to be in big trouble down the road.

My Hero

So, I have always been a Daddy's girl.  My first childhood memory is when I was about 4.  I had a bad dream.  I dreamed my family died and I must have woken up crying.  I remember my dad coming into my room and telling me it would be a long time before any of us died.  I've always thought he was the smartest person I knew.  Now I'm seeing another side.

I spoke briefly about how emotional he got when we were playing the memory game on vacation.  He talked about the night he first met my mother.  It sounded so typical of her.  She was wearing a red dress on New Year's Eve.  Always the center of attention.  He has always been a very stoic person, not showing much emotion.  I have always tried to emulate him in that respect.  Yet here he was tearing up over those memories.  All vacation he was very protective.  Even the debacle with the cave trip.  I think his intention was that mom not feel left out or like she couldn't do it.

Does that kind of love even still exist.  I remember at the nursing home when I first got out of college.  There was a woman in her 50's.  She had multiple sclerosis and used a motorized wheel chair.  Her husband had divorced her when she began needing more help.  My cousin too.  She also has multiple sclerosis and her husband left her.  Now my 80+ aunt cares for her.  That is what love is like now I'm afraid.  For better or at least until it becomes inconvenient for me.

The flip side is that I worry that my dad will be so stubborn and try to care for mom all by himself to his own detriment.  I have made the offer for them to come live with me and I have the space.  I just know how fiercely independent (and stubborn) my father is.  And I guess I also admire him for that.  He has faced so many challenges in life and persisted in overcoming them.  He is and will continue to be my hero.

Thank you to families

Who am I kidding when I think God has a plan for me to help families deal with dementia.  I learn much more from the families than I think I give to them.  After returning from vacation, I was reminded of 2 daughters of residents that taught me so much about being a long distance caregiver.  Terri was one of the first daughters that I got to know when I started at the assisted living.  She lives in Nevada, on the other side of the country.  But that did not stop her from doing lots of research and finding local resources to help her dad maintain as much functioning as possible.  She sent me a copy of the book "Creating Moments of Joy" by Jolene Brackey.   What an indispensable resource.  It is so easy during a loved one's decline as the illness progresses to think about all the losses.  This book reminds us to celebrate the skills and abilities that remain.

The daughter that I have been closest to and learned so much from was Sharon.  Her mother used to refer to her as her handicapped daughter.  Sharon might have been impaired mobility wise, but she is anything but handicapped.  She lived on the east coast, again thousands of miles away from her mother.  But she too researched and was so creative in coming up with ways to stay in touch with her mother and to encourage the skills that remain.  I have found myself using the same strategies Sharon used with her mother.  Well, probably because my mother reminds me so much of her mother.  From the artistic talents to the obsession with her pet cat.  So I bought my mom the abstract coloring books.  Actually, I got one for myself as well.  Since I am likely 3rd generation, I'd like to do what I can to keep what I've got.  This week I decided I was going to buy some pretty note cards and send a card once a week.  I remember the conversation I had with Sharon about how the note card is a tangible reminder of communication.  Although I call my parents every weekend, the phone conversation falls in the short term memory and so is more likely to be forgotten.

I sure hope I am helpful to families.  But I know the families have taught me so much.  I'm thankful to be able to use their lessons for my own family as well as the residents in my care.

Vacation

We have just returned from our annual vacation with the family.  My parents purchased a time share condo.  Each year, as many of us as are able get together for a week.  This year all three children and our spouses were able to get together with my parents.  I think everyone knows it was a priority to get together this year because it may well be the last we are able.  We went to Crossville, Tennessee.  We had been there 2 years before.  It was here that we first started noticing problems.  That year, Mom could not remember where the silverware was kept time after time after time.  This year there were some pretty distinct differences.

Even though we had been to my parents in May for a couple days, I did not realize physically how impaired Mom has become.  She says they walk a mile every day.  I don't believe it.  After a block or two of walking, she was needing to find somewhere to sit down and rest.  When we went to their house in May, she said the same thing but Dad corrected her that they missed 3 days out of the week that week.  My husband noticed that this trip Dad did not disagree with anything she was saying.  Dad is fiercely independent and so its hard to say, has he done research and realizes there is no point in correcting her, it is out of a sense of wanting to protect her dignity.  Doesn't really matter why, but it is good to see that he has discovered how best to respond.

Dad was very emotional.  Not all the time, but certainly more than is usual for him.  The first day was a disaster.  My sister in law wanted to go to some local caves.  When we got there, I recommended that Mom and I stay at the gift shop while the rest of the group went on the tour.  Between the uneven terrain and the dim light, ( I didn't know physically how impaired she was at that time), I did not think it was a good idea.  Dad was pretty insistent.  He had talked to the gift shop worker who said we could avoid the most strenuous part of the tour by waiting at a certain point for the group to return.  I deferred to my father's decision.  I don't want to be a bossy,  know it all and try to take over their lives.  It was a disaster.  I was right.  Mom has always had poor vision.  Some of the new research talks about how changes in visual perception are some of the early signs of dementia.  So it's hard to say which was the cause, but Mom could not navigate the uneven terrain in the dim light.  We made it through.  But after that, Dad became much more directive of Mom, holding her hand to guide her when we went walking anywhere.  Another time I hate being right.

Ever the counselor, I had brought along a no-win or lose game to play.  The object was to share stories, memories and personal reflections.  It was a good time, but Mom had a hard time following even the directions to move her playing piece along the path.  It was while playing the game that I saw Dad tear up several times and his voice crack.  I have just subscribed to a blog called "Watching the Lights Go Out" written by a man who has been diagnosed with Alzheimer's Disease.  It is such a blessing that he is willing to share his insights and experiences to help others understand what it is like.  I can only imagine what my father is feeling, watching the woman he married 50+ years ago become less and less.

In my own spiritual journey I am trying to focus on being content in what ever circumstance I'm in, to be grateful for the blessings I have and to concentrate on thankfulness.  So I tuck this vacation into that category.  I'm thankful my brothers understand how important this vacation was and took the time to be a part of it.  I'm thankful we were able to have this time together to talk about experiences of the past.  I'm thankful for the love between my parents and that my dad gets it, no matter how he has come to the realization.  I'm thankful for my own husband who took his vacation time to be with me and support me in such an important moment in time.

When My Job Becomes About Families as Well as Residents

I've talked for awhile about a resident I've had for several years whose dementia has now progressed to where she needs to move to the next level of care.  The family has been fabulous to work with the entire time she has lived with us and even as we plan for the next stage of her care.  I have had families who, for whatever reason, absolutely fight my assessment of the need for a different level of care.  Pretty much the entire time this resident has lived with us, her illness has had the slow, almost imperceptible decline.  So this week when there was an abrupt change, it took everyone by surprise.  Everyone had planned on an orderly, planned in advance transition.  And now we were looking at a much quicker move to the appropriate level of services.  As I was talking with the family about the new move date, I could hear, even over the phone, the sense of loss in the daughter in law's voice.  In my focus to be sure the resident's needs were met, I had for the moment, forgotten about the needs of the family.   I was reminded of another resident's daughter at this same juncture where she said to me, "This is no longer my mother.  This is a woman whose needs I am making sure are met, but it isn't my mother."  I was quickly reminded of the multitude of losses faced by families.  One of the losses is the extended family that our small, 16 bed assisted living has become.  The move itself signals many losses of the resident and of the person that she had been.  Although her body is still pretty healthy, the core of what makes each of us who we really are is gone from this resident.  In fact some of the symptoms as the disease progresses, paranoia, eating better with finger foods, the tearfulness are probably the exact opposite of who she was before the illness.

I see that on a very limited scale already with my mother.  The change in personality is much less now that she is taking the Aricept than it had been prior to starting the medication.  Yet I can see small changes that she is no longer who she once was.  As I mentioned before, the witty, highly intelligent, able to debate any topic characteristics are no longer there.  They have been replaced by obsession with the cats.  I'm always amazed at how intricately my past experiences have prepared me for where I am now.  That there can be any other explanation for this but a loving God who has a plan for my life is inconceivable.  And I'm reminded now of the many public speaking engagements I made while I worked for the mental health center.  One of the most requested topics is dealing with stress.  And one of the basic causes for depression is on-going stress over a prolonged period of time.  Exactly the situation so many families and caregivers face.

I am thankful for the wake up call on the phone the other day to remind me I am where I am not just to care for residents, but just as much for their families and loved ones.  I hope I can take my own advice as I begin the journey myself.  I hope my family will "hear" me as a professional with expertise to share and not as the child so that I can help my family as well as the families of my residents.

I wish it was like it used to be

"I wish it was like it used to be", she said with tears in her eyes.  One of the assisted living resident's dementia is progressing and she will have to move to another level of care soon.  Her family had talked with her about the move a couple days before.  She has had periods of tearfulness throughout her stay with us.  so it is hard to say whether she was speaking about the upcoming move, the loss of her husband, which we are not sure she actually understands, or where she is in her mind that has caused her to be  upset.

As a 16 bed assisted living, we trim every possible expense by having me do as much as I am able.  So most days find me running most of the day.  This was one of those times that I knew I had to stop and just listen. Also because we are only 16 beds, it is easy to get attached to our residents, especially someone who has been with you for several years.  Although I haven't yet read much about it, I like the premise of the Best Friends approach to dementia care.  So in that spirit, we just sat together.  I do where she was in her mind and she wasn't able to tell me.  But as a friend would do, we just sat together.  It's days like these that I love my job, yet find it very taxing.  Did I make a difference?  I don't know.  but I do know it was the right thing to do at the time.  And with such a daunting task, I guess that is the best I can hope for.

I wish it was like it used to be too.  I wish I was wrong about my mother.  I wish she was still the witty, well-read, debate a topic on a minute's notice person that raised me.  I wish she was still the caretaker and I was the care receiver.  But it's not.  Right or wrong, just or unfair, this is the hand we've been dealt.  I pray for the strength to move forward and continue to do the right thing, both at work and with my family.  But maybe I will take time now and again to remember how it used to be and to savor those memories.  Hopefully not to dwell on the loss, but to remember with thanks all I've been given.

The Face of Courage

She's been a volunteer at the assisted living for at least the 5 years that I've been there.  First, teaching Sunday School once a month.  Then for the past 2 years, playing the piano for sing along each week.  One day, the leader of the Sunday School group comes to me.  He asks me to keep an eye on this teacher.  She seems to have been having trouble with her memory lately and they are concerned about her.  This past week, I half listen to the Sunday School lesson as I work in the office on the computer.  She says to the residents, "I'm going to be forgetting things so I have started writing things down".  What? I listen more closely.  "They tell me as the disease progresses, I will forget things.  I could ask God why me, but I'm not going to do that.  None of us knows what tomorrow may bring.  I will keep on what I can for as long as I can for the Lord."  All this is said with the same smile on her face as when she shows us her latest photo or art project.

I don't know that I could do what she is doing.  I don't know how I am going to handle my mother's illness, much less what I would do if told I had dementia.  This is the face of true courage.  Moving forward in spite of circumstances, vowing to do your best for as long as you can.  This is a true hero and I vow to recognize these heroes when I have the chance.  Because none of us knows what tomorrow may bring.

Unfinished Business

This week, one situation brings to mind 2 thoughts.  Ever since reading the book "1000 Gifts" by Anna Voskamp, I've tried to cultivate an attitude of gratitude for the many blessings I have that get overlooked.  The research says doing so makes people happier.  As devastating as the diagnosis of dementia is, there are blessings if you look for them.

I worked for 4 years in the hospice field.  Not my calling, but as with everything God has placed in my life, a valuable learning experience.  I learned that knowing your time on earth is short allows you to take care of unfinished business sometimes.  A gift those who die without warning don't have.  So one of the things I hear my mom express regret about is the break in the relationship between her and her only sibling, her brother.  Now the reason for the break is obvious.  He was a jerk and trying to grab more than his share of the fruits of my grandparents lives.  Yet I can only imagine what it must feel like to be estranged from the one other person in the world that is your blood family.  So here I identify gift #1- my brothers and I have good relationships.

Pretty much out of the blue, my middle brother gets the opportunity to make contact with our uncle in a way where my brother can try to negotiate reconciliation if possible, without subjecting our mother to more emotional heartbreak.  Gift #2 & #3- God works in mysterious ways, but His ways are perfect.  This brother has the right skills to be the person to handle this contact and the opportunity was presented to him.  So he will pursue contact and see if reconciliation is an option.  That, of course, would be gift #4, but we will have to wait to see what happens.  Gift #5, having the opportunity while she is still able to resolve what might be unfinished business.  It occurs to me as I write this that we would all be wise to take note.  Not everyone has the opportunity to know their time might be short.  We would all be wise to look for areas of unfinished business in our own lives and work to resolve them if possible.  Secondly, I better take note and work to do all I can to make sure I keep a good relationship with my own brothers.  Thank you God for sharing your wisdom with my and for sharing it in little bits that my finite mind can comprehend at one time.

Hero of the week

What one milestone signals the reaching of adulthood more than getting your driver's license?  I would say nothing.  No wonder telling an elder they should no longer drive is such a cause for relationship problems and  self concept problems for the elder.  And how dare the whipper snapper whose diapers you changed dare now try to tell you what you should or should not do.  I have seen over the years how this one topic has been a root of serious relationship problems between a parent and a child.

So my hat is off this week to the doctors with the courage to be the ones to tell an elder they should not drive.  About a month ago, my mother's doctor told her she should not be driving.  After the psychological testing was complete, she told my mother in no uncertain terms she should no longer drive.  My mother thinks it is related to her stroke and she thinks it is not permanent.  And there is no point in telling her it is permanent.  All that matters is that she knows at this point in time she should not drive.  My mother was somewhat taken aback at how "stern" the doctor was in making her point.  Good for her!  I explained to my mother how you could stand to lose everything you had worked for in your life if you don't take the doctor's determination seriously.  Fortunately my mother follows the advice of the experts.

Over the years I have seen how much more difficult it is for a man to give up driving.  The loss of independence, of being strong & self sufficient is extremely hard on the self concept of men.  This week I had a new resident go out driving 2 days in a row and get lost.  Thank you, thank you, thank you to his doctor who immediately made the decision for the family and the resident that he should no longer drive.  In the past, I've seen so many doctors opt out of that discussion, saying it is a family matter.  Thank you to these 2 doctors who have the courage to do what is right, not only for the patient but for the community and ease the burden for the family.  There are enough difficult decisions for the family to make.  Thank you for being on the team and "taking the heat" for this very serious, very important issue.

Glad I'm not God

It's been a tough week at work.  One of the residents that is in the middle to late stages of dementia fell and broke her hip.  Broken hips are usually bad news.  Elderly folks break a hip and frequently don't regain their previous level of functioning.  Elderly people with dementia who go under anesthesia really don't fare well.  So when I go to pray for this resident, what do you pray for?  I'm so glad I'm not God.  I can't possibly imagine what the best outcome is for this resident and her family.  I would prefer to do what I feel I'm called to do in my own little corner of the world.  I just hope what I do does make a difference.

Smattering of topics

We just got back after a flying trip back to see family and another short vacation.  Mom has been on Aricept now for about a month and I can tell a subtle difference.  Even she says she can tell a difference, although she believes she is recovering from the stroke.  She still forgets things about 5 minutes after they happen, but it is a subtle personality change that I could see.  I don't know how to explain it other than her personality doesn't seem so shallow now.  That could be because the last time we saw them, in November, her obsession with her cats was almost constant.  Now she was able to carry on a conversation for quite some time without talking about or looking for the cats.  She still has periods where she gets focused on where the cats are and asks Dad repeatedly to go look for them, even though they were located within the last 10 minutes.  He gets frustrated and ends up by yelling.  I know he ends up feeling like the husbands that attend my Caregiver Support group, he gets frustrated, explodes, then feels guilty.  I think I'm going to create a spreadsheet for them where every hour he can write down where he last saw the cats.  Then maybe if she sees it in writing, it will calm her until the next hour.

The exercises that she is supposed to be doing following the stroke are an issue as well.  She thinks she is doing them.  He reported that the week before she did not do them for 4 days out of the 7.  I've noticed one of the issues she has is that she will talk and talk about doing something but just can't seem to get the impetus to actually do it.  For instance, I gave her oil paints for Christmas.  She says she has been too busy to use them.  I guess she is busy looking for the cats most likely.  I have a new resident that is going to move in that is in the same point.  He has great daughters who want to support him but not take over.  I was telling one of the daughters the other day that they are going to have to give him a nudge because he just can't do the planning and follow through required on his own.

Speaking of families, this week has been tough because I have a resident whose dementia seems to be progressing after doing really well for several years.  I look at one of her children in particular and I can see the pain of watching his mother become someone he doesn't even know and his losing the mother he did know.  I actually said out loud to myself the other day, "maybe Mom will have a big stroke and it will be all over before it progresses to that point".  That is very unlike me.  I have prayed for years for God to give my parents health and long life.  I don't feel ready to be the foundation generation yet.  But maybe losing her quickly would be easier on us all that losing her slowly.

So after a short break, I'm back, asking God to help me help residents and their families and to give me the wisdom to know what to do with my own family and the strength to do it.

Avoiding hospitalization

The latest edition of Care ADvantage, the magazine put out by the Alzheimer's Foundation of America, had an article about trying to prevent hospitalizations for individuals with Alzheimer's and how to make the best if someone does go to the hospital.  I saw first hand this week another aspect of what happens when someone with dementia goes to the hospital.

One of the residents at the assisted living went to the hospital about a month ago.  It was not a preventable situation.  While in the hospital, she did not get up and walk.  So after addressing the issue that sent her to the hospital, she needed a rehab stay at a skilled nursing facility because she had lost so much strength and ability to walk on her own.  So off she goes for the famous 21 day stay at rehab.  I understand why it happens, yet that doesn't make it any easier to watch.  While at both the hospital and rehab, she was restricted from walking except when there was a staff member to walk with her.  Because of her dementia, she was not one to use the nurse call system when she needed to go to the bathroom.  So if she didn't call, they didn't walk her to the bathroom.  She walked during the physical therapy sessions, but that was about it.    And I firmly believe the old saying, if you don't use it, you lose it.  And she did.

The staff at the skilled nursing facility told the family that her inability to walk now (when she was slow, but able before going to the hospital and the reason for the hospitalization had nothing to do with her walking) and the fact she was not feeding herself was because the dementia had advanced.  Now I can't see into her brain so I can't say it wasn't.  I just think it was more a function of how the system is set up that isn't beneficial for people with dementia.  First of all, I don't like to just write a decline off to dementia progressing.  I think that can be an easy explanation for people to fall back on.  Secondly, I have worked in a skilled nursing facility and I know with the pace there, it can be much more efficient to just do things for a resident, feed them, wheel the wheel chair to the bathroom, or just change pads if they don't make it to the bathroom.  And I'm not against facility care.  I know there is a need for it and I know there are lots of facilities out there that are really trying to do the best job they can.

So when I went to evaluate her for coming back to assisted living, she was not in any shape to come back.  We are lucky in assisted living because even though we see our residents decline and need a higher level of care, we don't watch them deteriorate to the extent I did when I worked in a skilled facility.  That doesn't mean it isn't hard to see.  Not only was it hard for me to watch while she ate when fed, but not on her own, but I could see the future for my own mother as well.  It used to be when I first started in long term care, I accepted people where they were at the time and it was okay.  I hadn't known them in the younger days as young wives and husbands, parents, grandparents.  All I knew was how they presented at that time.  Now as a family member myself, I understand how hard it is to watch the person you once knew disappear.  And just as hard is the saying good bye to the family member that has become a part of your family as well.  Giving the daughter a hug, her looking you in the eye and you both know this move out of the assisted living is the beginning of the end.

I do love my job and I love being able to help residents and family members.  And I guess if I really didn't care, then it wouldn't be so hard to watch a resident decline or have to say good bye to a family member.  I just pray this experience helps me to be a better person, to be a better care-giver, to help families more and to be better at caring for my own mother.

When do you step in?

The three children have been having on-going discussions about the right for our parents to make their own decisions versus the help we would be able to give, if they were not so far away from all of us.  Dad has voiced that he believes in the "we take care of our own" philosophy.  Which would be great if there was a great support network in place for them where they are.  There isn't.  No family close by and I've seen it a million times, friends are well-meaning, but they have things happen in their own lives they have to take care of.  So for now, all three of us are resigned to not pushing them to move and trying to be as supportive as possible from far away.

But then you have a conversation like I did today.  Ironically, I was having Mom look for the Aricept I knew Dad told me last week the doctor had prescribed for her.  Dad was napping when the discussion first began or I would have asked him.  So she couldn't find it.  Dad woke up from his nap and got frustrated because she was looking in the wrong place.  Seems that for the first week, he has to halve the pills, so he has them in another place with the pill splitter.  Between her poor vision and poor memory, she really didn't have much of a chance to find it.  And so he yells.  To be honest, they were both yellers when we were kids.  And he has never been known for patience with people, with machines, yes, people, no.  During our discussion last week, it is pretty evident he is still very much in denial about what is going on.  So between not accepting and not understanding what is going on, coupled with his personality characteristics, as time and the disease go on, this is not going to be good.  She can't help the fact she is having trouble with her memory.  And her vision has always been poor, now in addition she has processing problems.

So I don't have any answers.  I just know I am going to have to stay tuned in and try to catch it before it gets bad.  I'm enjoying not being on the bad list right now.  No-one even remembers I was talking about memory problems before the stroke.  Everything is being blamed on the stroke now and I'm fine with that.  But I have to prepare myself that I will have to become unpopular again.  Just knowing Dad's personality, he will lose patience and frequently.  And she will not understand and that won't be any kind of quality of life.  So I guess I will live the one day at a time philosophy.  I'll enjoy not being on the bad list for now, knowing I will have to be put back on it at some point in the future.

Sibling solidarity

Finally, the last hold out of the siblings has come to the realization that there is a serious problem.  It is amazing how much clearer you see things when you are face to face than when you talk on the phone or hear through others.  After a face to face visit last weekend, my baby brother realizes there is a serious problem and is on board to do something about it.

As I've said before, I would be happy to be wrong about this.  But since we all agree, and the psychiatrist agrees there is a problem, at least we all need to get on board and do something about it.  I am so thankful that all three of us are in agreement.  I see so often, working in assisted living, that children frequently prefer to stay in ignorance rather than face facts.  And of course there are the children that are totally self-centered and even if they recognized a problem, would not help with it.  It makes you wonder as a parent, is there something I can do to ensure my children will stay together and work together?  I guess only time will tell.

In my life in general and especially in this situation, I am trying to focus on being thankful for the positives and not so much dwell on the negative.  I am certainly thankful for the support and solidarity of my brothers.  I know from experience this will be a long process and require a lot from all of us over the years.  I'm just thankful we will be able to share the burden.

Snoezelen in practice

I experienced first hand this week the concept behind the Snoezelen therapy concept.  According to Wikepedia:

"Snoezelen (pronounced /ˈsnuzələ(n)/) or controlled multisensory environment (MSE) is a therapy for people with autism ordevelopmental disabilities. It consists of placing the person in a soothing and stimulating environment, the "Snoezelen room". These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses, and the floor may be adjusted to stimulate the sense of balance.

Originally developed in the Netherlands in the 1970s, Snoezelen rooms have been established in institutions all over the world and are especially common in Germany, where more than 1200 exist.

The term "snoezelen" is a neologism formed from the Dutch "snuffelen" (to seek out, to explore) and "doezelen" (to doze, to snooze). "Snoezelen" is a registered trademark of the English company Rompa.^[1]

Ideally, Snoezelen therapy is a non-directive therapy^[clarify] and can be staged to provide a multi-sensory experience or single sensory focus, simply by adapting the lighting, atmosphere, sounds, and textures to the specific needs of the client at the time of use. There is no formal focus on therapeutic outcome - the focus is to assist users to gain the maximum pleasure from the activity in which they and the enabler are involved. An advantage of Snoezelen therapy is that it does not rely on verbal communication and may be beneficial for people with profound autism, as it may provide stimulation for those who would otherwise be almost impossible to reach.

Snoezelen therapy is used for people with autism and other developmental disabilities, dementia, brain injury and even toddlers. However, research on the benefits of treatment is scarce, based on variable clinical study designs.^[2][3]"

I got a new body wash with the Sweet Pea/ violet scent.  I was amazed that as I started to wash and smelled the scent, I was reminded of a doll I had as a kid.  There were these tiny little plastic dolls that had scent in them and I remembered distinctly the doll, where we were living when I had the doll, what my bedroom looked like, how it felt to hold the doll.  It was pretty amazing because I probably could not have called up that memory without the scent.  

There is so much we don't know about the brain and how various forms of dementia really affect it.  Just yesterday my boss, who has tons of experience in long term care and caring for individuals with dementia, commented about how her own mother at times seems so clear.  When I talk with staff I try to remind them that we don't really know how much someone is processing of what we say and do.  They may not be able to respond in a way that we can understand, but it doesn't mean they don't understand somewhere inside.  How exciting that so many new ideas of therapy and creating therapeutic environments are coming into use.  I may not get to use them to help my mother, but I hope I can use them for the benefits of others.

Examples of True Love

I have been amazed this week at the examples of what love really means.  I've had the opportunity to talk with several husbands that are caring for their wives with dementia.  I guess it is a cultural thing, but it doesn't seem unusual for the wife to be caring for the husband.  After all, women are natural care-givers.  But I have been amazed at what these husbands are doing and have done for their wives.

My first experience of what can happen when someone is diagnosed with a chronic, progressive illness happened at my first professional job in the nursing home.  There was a lady there who was in her 50's and had been diagnosed with MS.  She used an electric wheel chair and got around the nursing home, although she needed assistance with everything.  Her mind was still very much intact.  Her husband had left her when her illness began to progress and she needed more help.  The same thing happened with my cousin who has MS.  Her husband left her as she became weaker.  So I guess I had come to expect that although women stay around to care for their spouses, men do not.  I love to be proven wrong.  I met a really wonderful gentleman who is caring for his wife who has early onset dementia.  Not only is he not contemplating giving up, but he sought out the Caregiver Support Group because he wants to do the best job he can.

I don't know why I am surprised, I know my own father would not skip out.  But then like most daddy's girls, I think my father is one in a million.  It seems in our culture men are judged by how strong they are.  So here is a toast to the men who are strong enough to stick with it, to take up roles they never had before and work outside the home and take care of the house, who pray for and practice patience with their spouse's illness, who should be recognized as heroes.  You are heroes in my book and I know in your family's eyes as well.

The Frustration of Being a Daughter

I got a call this week from another daughter.  She was calling to find out about the Caregiver Support Group for her dad.  She lives out of town and wants to help her dad.  If only he would let her.  In this particular case, the wife has early onset dementia.  I actually remembered talking with him several years ago about assisted living when the wife was first having problems.  They were early in the process and my boss had recommended they get a thorough medical exam.  It's odd how initially Alzheimer's was linked with relatively young people having memory loss since it was thought that as people age, every one would develop memory loss.  Now when someone, even as experienced as my boss, sees someone young with symptoms, they assume it must be something else.

What a disservice our culture does to male caregivers.  The expectation that they be strong, handle everything by themselves it so potentially damaging to them.  Even as hard as it was for the 2 wives in the support group to come to their first meeting, they knew they needed help and had the support of their friends and family to come get help.  Now here is a man who needs the support, but trying hard to be strong and not get the support and help that would be so beneficial.  And for us daughters, how heart wrenching to want to help, to try to help and to be so powerless to do anything but get information and pass along.

I can't change society or the expectations built up over hundreds and thousands of years.  But what a good insight to bring to my attention.  How do I make it easier for men to accept help and to come to the meetings?  And maybe in the process I discover something to help my own dad.  Thank you Pam for your call- a call to action for me.

Open to Surprises

No matter how much experience I have and how much I learn, I am always amazed at what new things you can learn if only you are open to doing so.  During last week's phone conversation with Mom, I learned an interesting tidbit about my grandmother that I had never heard before.  Grandma and Grandpa had to move to be closer to my parents after Grandpa had his stroke.  Grandma wasn't able to handle everything on her own and my parents lived 8 hours away, too far to really be of help.  It was probably 5 years later that we realized Grandma had what was diagnosed then as vascular dementia.  Looking back now with hindsight, I should have seen the signs that at the time of Grandpa's stroke there were warning signs.  When she referred to stop lights as "electric stop and go's", my husband and I thought it was funny.  It was a actually a sign of things to come.

Grandpa went to a nursing home near Mom and Dad, but for a short while, Grandma lived in the house with them and my two brothers who were still at home going to college.  I was already married and out of the house, half the continent away.  It was pretty rough on my brothers.  My grandmother was pretty demanding and I understand got pretty ugly with them at times.  That was very unusual for a woman who attempted at all times to present the image of decorum in her younger days.

In my conversation with my own mother, she talked about how at one point my grandmother told her that she and my dad were at risk of not paying enough attention to my brothers.  I would have to agree.  My parents had their own business and it pretty much consumed their lives during both my and my brothers teenage years, pretty impressionable times.  It was an insight that surprised me and I was surprised my mother shared it with me actually.  My grandmother saw what was going on and tried to help my brothers back when she was still herself and untouched by the dementia.

I was hoping to show my brothers how the behavior that had been so difficult for them was symptoms of the dementia and that she really did care about them when she was still herself.  Imagine my surprise when one of my brothers responded still quite angry about what had happened.  It reminded me of my advice to my staff with our residents.  We never know what has happened in the past with our residents and their families and we can't make judgments.  We see the person as they are at the moment.  We don't have any of that past information.  I hope in time my brother will be able to heal and  see the behavior was the disease, not the person.  In the meantime, I hope to be able to hang on to these new revelations about people I thought I knew.  There is always something to learn if you are open to it.

The Battle of their Lives

I was at the grocery store yesterday and noticed an elderly man doing the grocery shopping.  Not so strange until I caught up with him several aisles later and saw that he had his wife with him.  She had a walker and was sitting in it.  He would push his cart and shop, then go back and get her and she would walk with him to the next section.  I saw what my dad will be in a few years.  Since my husband retired from the army and we live near an army post, I use the grocery store on post.  Everyone in it is either retired military or active duty.

This man was about my dad's age, I'm guessing, 80 something.  Possibly old enough to have been in World War II, certainly the right age to have been in the Korean War. He was slight built like my dad and about 5 foot 8.  Like my dad, a proud man who wanted to be independent.  Taking care of his wife at the same time as doing the chores that go along with life.  I think about men like this.  Men who have served their country, men who have risked their lives.  And at this stage of life, they want to continue to be the strong, independent men they have been all their lives and do it all.  Do they know this is the hardest battle they will fight?  Instead of being a partner, they are now the caregiver for their wife.  They have their own health problems and if not too bad, certainly are not in the state of health they once were.  Yet like my dad, I'm sure this man does not want his children "helping" either.  I'm a helper by nature.  Yet I'm having the greatest challenge in finding the balance.  How do I help, yet not take over, not take away the independence and decisions even when I think I know best.

I thank God for opportunities like yesterday to see the picture at a further perspective, not so close as it is with your own family.  I hope it will help me to make the best decisions on what I should do and what I should stay out of.

Lessons from Unusual Places

One of the things I love about my job is learning from elders.  I love to learn about history from those who lived it.  This week I learned a valuable lesson about the roles of child and parent.  I come from a long line of people who think our way is the only "right" way.  So you can imagine what happens when something comes up and we have different opinions on what should be done.  I have taken it upon myself to be the coordinator of what is going on with our parents.  I send out e-mails with my observations, my interpretation of what is going on and of course what I think needs to be done.  I don't usually appreciate it at the time, but one of my brothers is the voice of "take a step back".  Sometimes I think he errs on the side of not taking enough action.  But this week his view point was confirmed by one of my residents.  She is going to be moving to another facility because it is cheaper.  She is not happy about it.  She told me the other day, "when your children are young, you make the decisions for them.  When you get old, your children make decisions for you."  She went on to tell me "when your children are young they step on your feet, when they get older they step on your heart."  What a powerful reminder that not only are there more than one "right" way to do most things, but that sometimes the relationship is more important than the task at hand.

I of all people should know better.  I am the one always telling the staff that when our residents get upset, we need to remember how much they have lost, their homes, their health, their ability to make so many decisions.  I am so thankful for my brother's point of view, my resident confirming it, and the ability for me to learn from this situation.  When the time comes, I will step in and make decisions because I have Power of Attorney.  But until then, I need to step back and support my father just like I support the families of my residents.