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.