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.