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.