Reflections from the Year

One year ago, in December 2019, it seemed that everyone was approaching the coming new year with great excitement. I was no different. I had received a kidney, a new chance at life, just weeks before and though I was experiencing some back pain I was generally feeling better and was ready to go back to work and back to life. In January 2020 I started to experience the first setback in what turned out to be a year of setbacks. I could not return to work due to my debilitating back condition and had to resign a job I loved. Not only was my sudden debilitation discouraging, but so was the loss of something I’d worked so hard to achieve. On February 1, my daddy had his 3rd stroke and was unable to express himself and had motor difficulties. It has sense become apparent that he also began having some cognitive issues. February 3 my maternal Grandmother passed away. With Dad in the hospital and my grandmothers funeral, it was a very hard time made worse by some family drama. The month of February brought lots of rehab for Dad and lots of support for both parents until they returned hone to NC at the end of the month where Dad continued his recovery. Then Covid hit. The world as we all knew it changed right before our eyes. Lockdowns, fear, chaos, information and misinformation, questionable decisions made by elected leaders. The faculty that I’d resigned from just 2 months earlier locked down and within weeks had a Covid breakout that sickened about 135 older people and caused the death of 30 of my residents. While I was thankful as a kidney recipient to not be there, my heart was breaking at the loss of so many who I cared about and the level of stress on my friends and co-workers. I felt guilt, helplessness, sadness, grief, and even some level of depression. Through all this my back was getting worse and Covid lockdowns had meant that I could no longer attend PT to try and improve my back issues. Things worsened, requiring spinal surgery just 10 months after my transplant. Thankfully in June the Lord opened the door for us to attend outdoor services at our new church. This was a refreshing oasis in the middle of what had become a parched dessert in my life. Fellowship, prayer, sound teaching that fed me and started to renew my spirit. New friendships that led to an online Bible study and prayer group that God used to help me grow and persevere. God used the ladies in this group to encourage me and help me to be able to keep going. In August I spent 2 Saturday’s in a row before my scheduled surgery visiting my paternal Grandma for the first time since the lockdowns began. Grandma and I were very close, and even in her advanced dementia she knew me and we took joy in our visits. I kissed her two days before my surgery and promised to return as soon as I could afterwards. Grandma died just 1 1/2 weeks later, before I was able to travel back. I was devastated. My new church and Bible study were supporting me through my recovery, and now they were supporting me in my grief. 2020 brought so much that was unexpected and hard and life-altering. As much as I mentioned here, both personally and in the world at large, so much more happened this year. I was reading Hebrews 12:1-2, which says “Let us run with perseverance the race marked out for us, fixing our eyes on Jesus.” I have to say, 2020 has felt a little more like a race, a marathon requiring a lot of effort and discipline, determination and skill to complete. I like the idea that we “press on to the goal”(PHIL 4:13) in this race with Jesus by our side. Jesus is fully invested in the race, and He remains on our side and by our side. Even when things get a little hairy, and we feel exhaustion or discouragement chasing us, when obstacles appear that we somehow must navigate as we continue to run our race He is there to help us keep pressing on. In Him we can shed the things that hinder us (Hebrews 12:1) and be encouraged. Now we all sit at the end of 2020 and are looking to the new year with hope again. Despite the setbacks to my race this past year, I will keep my eyes on Jesus to keep running my race. I have learned so much about relying on His strength when I have none. I have learned anew the value of fellowship with other believers (Hebrews 10:25, Galatians 6:2) in running my race, I have learned that the church is not dependent on a building or the cooperation of leaders or circumstance. It is all about Jesus. So with Christ I will persevere.

This morning our cat, Pixi, was sitting in the window in the office while my husband worked. Suddenly a hornet began to fly at the screen and kept bumping into it as he tried to get into the house. Pixi, of course, was fascinated and thought that this little guy was a new friend come to play. My husband observed that the hornet seemed to have a long stinger that could possible make it past the screen to a swiping kitty, so he showed it away. Pixi was not happy with him at all for chasing away her new friend. She had no idea that her new companion posed a very real danger to her health and well-being.

I began to think about how often I do this. I find a person or thing that I’m interested in, that I insist is good for me, that I want to cling to, and in reality that person or thing is not good for my personal health or mental well-being. How many relationships were toxic that I tried to hold on to for far too long? How many habits were draining and poisonous to me? How many activities that I thought I could “handle” turned out to be something that left lingering consequences that just plain hurt?

When I was a child I did this a lot! I used to get mad at my parents for saying no to stuff, for not letting me date certain guys or do certain things with my friends. I couldn’t understand that they had more experience than me and could see the danger in certain people and situations that I could not see in my immaturity.

I still do it sometimes as an adult. I hold on to relationships, I make excuses about things, and I often think I know better than loved ones of friends who warn of potential dangers they see ahead of me. Learning to listen to these voices has been challenging to say the least. It is hard to let go of things that we are comfortable with, even when those things are toxic to us. It’s hard to understand no “stay away from that” when we don’t see the stinger or understand that it can harm us.

As a believer, I even must admit I do this with God. I don’t always like it when he says that someone or something is not healthy for me. I don’t like it when close relationships come to an end or find that just when we settle in to a church and home, a job change forces another move. I don’t like giving up foods I love because they are not good for my diabetes or will keep me from losing weight. I don’t like denying myself, and I don’t like change. I am learning, however, that neither of these things are bad, and that God uses them to help me grow and be the best me I can be. He is shaping me into someone who is more like Jesus, someone who loves and cares and gives.

With Pixi this morning, my husband wasn’t depriving her of joy, he was protecting her from harm. Just so, the disciplines and changes that shape me will not harm me but will grow me and protect me and ultimately help me.

Call Me Old-Fashioned, But Where Is The Respect??

I happened across a video on social media this morning that I really have no idea why I watched, but I did.  The video featured a couple having a serious discussion where the woman confessed to cheating.  As he tried to process this news, and quite frankly get a word in edgewise, the woman kept talking and justifying her actions.  She felt that because she was honest that everything should work out and they could “fix” it. She would not listen to a word he said, and even continued to touch his arm when he said “Don’t touch me.” A sad situation.  Just as the man got up and said that he was done, that he was not willing to fix it, she admitted that it was all a prank.  He kept walking and she could not understand why he did not see the humor.

There are so many things running through my mind about this video that I am having trouble deciding which item should take priority.  I think it boils down to this:  When has it become appropriate or funny to disrespect someone and cut them in two? For the sake of a prank, this woman was willing to play a game with her loved one’s heart and mind.  A prank is putting plastic wrap under the toilet rim or short-sheeting a bed.  It is not taking aim at a heart.

Relationships that are strong are built on trust and honestly and respect.  They are forged by two people who understand the gift that it is to love someone and seek after someone else’s happiness. I am married, and I would NEVER try to pull a prank like this on my husband because I don’t want to cause him pain or even give him a moments doubt about my intentions toward him.  I believe that a prank like this can plant a seed of doubt and mistrust.

Another issue I have with  this is that too often it is a very real scenario with very real people and very real pain.  It is crushing to face cheating in a relationship.  It is a betrayal that goes deep, and often it is one that a couple cannot recover from.  Even when two people are able to get past it, it changes the relationship.  It takes time to rebuild trust and connection.  It is not funny, and I feel that it is very disrespectful to poke fun at someone in this way.

I see this dynamic all too often in out society now.  It is much harder to connect and build a meaningful relationship because our societal norms are more geared toward our own happiness and fulfillment.  Don’t get me wrong, it is important to pursue your own health and happiness.  A healthy relationship will include two people who are making their partner the priority rather than their own needs, and because both are pursuing the same goal both people are fulfilled.  I have found that when I work to make my husband my priority and I protect his heart and encourage his growth, my needs are met.  He is doing the same for me at the same time.  True intimacy.

Neither of us would ever play a game with the others heart, and neither of us would ever prank each other in such a cutting personal way.

I think that man should have gotten up and left, and I think he should have started running when he found out it was a prank.  He is not safe with this woman.  She cannot be trusted to care for his most intimate gift–HIMSELF.

Reflection

On October, 2019 I was gifted a miracle.  I received a kidney that was donated by a living donor.  I do not know anything about this person other than they are living and they made to choice to donate a kidney on purpose. It is very humbling to realize this.  Some day I will attempt to contact this person to thank them. If they so choose, I may find out more about their decision.

It’s been about 14 months since my doctor informed me that I should consider transplant because my kidney function had rapidly declined and my kidneys were barely working. On November 19, 2018 I began my transplant journey, which involved a lot of tests and doctor appointments.  I was approved and added to the kidney list on Valentine’s Day.  At that point I was told that it could be roughly 5 or more years before my name came up on the list.  I was blessed, however, to have friends and family members who were willing to be tested as a living donor. One of these friends was approved, but for whatever reason could  not give directly to me.  We were enrolled in the paired exchange program, so that person could still give and I could still receive a kidney.  I am thankful that person was willing to still donate. The identity of my donor ultimately is unknown to me, as well as the location of him or her.  It truly was and is a miracle.

I am home and recovering now.  My life has changed a lot in  a very short time.  I am now immunosuppressed so that my body will not reject my new kidney.   I am on a lot of medication, and managing that is a part-time job!  When I go to the doctor, I have to wear a face mask and do my  best to constantly wash and gel my hands. My family has to be cautious too. I have to change the way I store food and be extra conscious of what I am eating.  Anything that can carry bacteria can make me sick.  I have to avoid ice, salad bars and other such things that I have taken for granted to this point in my life.  I cannot have herbal teas anymore, and certain fruits.  All  of this is new to me and is a bit overwhelming right now.  I’m sure as time goes on it will be much easier to manage.

For me, October 8 is a date that will always stand out, like my birthday does.  It will always be the  day that God and an angel  person chose to love me by saving my life.

Even though I still have staples in and a surgical drain, overall I am feeling better.  There is something about having a working kidney that my body really likes! As I  am home recovering I will be doing a lot of thinking about my life going forward.  I plan to take full advantage of this new life that has been given to me.  I plan to honor God and my donor by LIVING.

I am excited about life again!!!

Jane Doe

I have a new resident on my unit today.  To protect her privacy, I am going to call her Jane Doe.  Jane is rather young, comparatively.  She comes to us with a diagnosis of Vascular Dementia as a result of a stroke, and she is at least 20 years younger than most of the people on my unit.  I just went up to talk with her, and she is sitting in a chair near the nurses station and she looks absolutely terrified! I offered my hand and introduced myself, and she told me her name.  She told me in a very shaky voice that she does not belong here and she wants to go home.

Jane Doe is being placed in my facility for long-term care because her husband and other family members are  not able to handle her care needs post-stroke.  It is very sad to see, but it is an occurrence that happens all the time with any kind of Dementia.  A person who is affected has such drastic changes to their ability to function, to think, to understand things, to do things for themselves that they need often extensive help.  Many families are able to handle these changes and can offer the support that the affected individuals needs.  But due to jobs, housing, health concerns, and any number of other factors, sometimes it is impossible for families to handle these care needs.  In Jane’s case, she is “triggered” by her husband, meaning that for some reason she is very combative when her husband tries to help her with her care.  It is not only stressful for Jane, and for her husband, but it can be unsafe for the both of them as well.  So Mr. Doe has made the decision to place her for long-term care.

It is going to take time for Jane to adjust to her new surroundings. Nothing and no one is familiar to her.  One of my primary tasks is to spend some time with her, engaging her in conversation and listening to her feelings.  I will be spending time reassuring her and validating her frustrations and fears. I will be striving to introduce her to her surroundings and to her new routines.  I will be learning more about her interests and personality and attempting to help her meet her peers.  This process is not going to be easy or fast.  It is important to remember that often times placement in a nursing facility is the very last thing that a person desires or wants for their life.  Even the most confused individuals will know that they are not at home with people they know.  It can be a very scary time, and there are all kinds of reactions.  Some become combative, some are argumentative, some are verbally abusive, some try and leave, some wander around and try to figure out where they are.  In Jane Doe’s case, she is very meek and terrified.  Like most, Jane is asking to go home.  Very few settle in and make friends and make an instant adjustment, though it does happen sometimes.

Why am I writing about this today?  I think Jane Doe just hits my heart.  I work with individuals who are affected by Dementia every day and I see people who are smart and creative and innovative and who have survived and even triumphed in life who are cut down and  changed by this disease.  Founders and presidents of companies, doctors, nurses, teachers, blue collar workers, stay-at-home wives and mothers, coaches…people from all walks of life and educational backgrounds, from all religions and ethnic backgrounds, even from varied age groups.  Dementia can affect anyone, and it always leaves such devastation behind.  That is why it hits my heart.

If you think of it, say a prayer for Jane Doe…and for all of the John and Jane Doe’s out there and the people who love and care for them!

Struggle to be Me

I am a pretty introverted person, especially since my diagnosis with End Stage Renal Disease (ESRD). I just don’t have the energy often to be social and interact with others the way I used to.  I always had some “introvert” in me, even when I was a very social young person.  I would thrive on activity and being around others…until all of a sudden I would need to step away and be alone for a bit to regroup and re-strengthen. These moments would find me reading with a cup of tea or wine with my feet up and sitting secluded in some corner of my house.  Nowadays, I am most likely to be found in this state!  I run out of energy so quickly sometimes that it amazes me.  I can still do things like go to a Phillies baseball game or go to Longwood Gardens with friends, but I have to make adjustments to do these things.  I can’t walk too far without being able to rest.  I can’t stay out too late.  I just don’t have stamina anymore.  Crowds and noise can get to be very stressful for me.  It has been a big adjustment for me! I don’t even talk on the phone as much as I used to.  It just takes a lot of energy that I no longer feel I have!

Sometimes I feel like this is the worst part of being sick.  Who I am is different, has to be different.  The things I can realistically enjoy are different as well. It is hard for others to understand unless they know me very well.  After all, I don’t look sick.  I actually look pretty much like I always have, and I hope that doesn’t change.  But people like my husband and kids can see it.  They see me having to stop and rest and not be able to walk for very long, they see me avoiding going to the mall because “I just can’t” and they see me going to bed at 7:30 many a night.  They see me not eating like I used to  and not feeling well after I eat. They see how difficult it is for me to clean my house or do any task that I “should” be able to do at my age. The times I can be social and be my out-going self are becoming fewer and farther between.  More often than not I am quiet and solitary now, and just tired.

I hope that if/when I get a new kidney I will be able to get more of me back! I hope that I am able to walk again and have stamina again. I want to be able to be social again and not feel drained from just trying to do life. I want to have my moments of being able to laugh and do things with friends without needing to rest or bag out early.

I want to be me again.

Is God Only Good When I Get What I want?

I have been noticing something lately that has started me thinking.   Someone I know of received her kidney transplant after waiting for it for a long time.  Her report was that “God is so Good!”  I’m not criticizing that person, but I notice that when things go our way, we will say “God is good.”   When someone gives birth to a healthy baby after a long wait or a miscarriage, “God is good.”  When someone is promoted at work, “God is good.”

And yes.  God IS good.  But….

What about when things are not going our way?  What about when a living donor that looked like  it would provide a lifesaving transplant falls through and instead you get sicker and start dialysis and have to wait years?  Is God still good?  What about the woman who loses her baby, or the one who just can’t seem to conceive.  Is God still good?  What about the man who is passed over for the third time for a deserved promotion?  Is God still good?

Yes, God is good, and he does give  those who delight in him the desires of their heart (Psalm 37:4, NIV).  To borrow from a popular movie, “You  keep using that word (desires of your heart).  I do not think it means what you think it means” (Inigo Montoya, The Princess Bride, 1987).  I put forth that God is good, whether I get what I want or not!

For so many of us, our experience of God, even our decision to believe in his existence, depends on whether we like what we see and feel.  We want to “feel” his presence in a tangible way, to have an emotional high even, and have it all the time.  We want to get the answers to our prayers that we work out as best, and often we only pray when we want something.  We want to see God eradicate suffering and bad things, and when they happen anyway we conclude that He doesn’t exist, or that He can’t be trusted, or that He just isn’t powerful enough to stop it. We look at God in a very limited way that only takes into account our perceptions and our world-view.  We don’t realize how very limiting this perception of God really is.

God is good.  He is always looking out for His people, always working His plans and purpose, always with us and for us and He always knows what is going on.  Romans 8:28 (NIV) says that he works “all things for the good of those who love him and who are called according to His purpose.”  All things does not just mean the good things, the things that make sense or the things that bless us or make us happy.  All things even means the icky stuff, the stuff that looks bad and hurt, the things that we wish would go away.  He turns those things around and makes something good from them because He is good.  His plans are good and  His purposes are good (Jeremiah 29:11, NIV).

When things don’t go the way we want them to, our true view of God and his character comes to the fore. When our faith is strong and our trust in God is complete, we can say God is good and mean it in the face of anything! We can rest and know that it will all be ok, no matter what “it all” entails.

God is good!

 

 

 

I had an interesting experience this morning.  The church that we attend offers two service choices for the second service:  One is a normal service and one is done completely in Spanish.  My husband is fluent in Spanish, so we decided it might be nice to attend the Spanish service.  As I do not speak Spanish, I was given a small handset with earbuds so that I could hear the translator. As I said before, it was a very interesting experience.  The first part of the service was not translated, so my husband tried to translate the bits that were said between singing worship songs.  It was a little awkward but we managed. I knew a couple of the songs in English, so I was able to worship as well.  When the Pastor began to speak, the translator began to, well, translate.  Unfortunately, my handset was not working very well.  The signal wouldn’t consistently stay on and so the translation was cutting in and out.  It was frustrating.  Someone noticed my struggle and came to help.  She told me to come with her and we went back to the little room where the translator was speaking into the mic.  My handset worked perfectly close to the translator.  I had to sit right outside the little room away from my husband to hear and understand the service.  As I sat there, I looked around and realized that there were several families with toddlers sitting around me.  The kids were staring right at me!  I looked very different from their parents and all of the people that they normally saw.  In a sense, I did not belong there.  I was different.  In a way, it was a bit awkward.  I realized in that moment that I was getting a small taste of what it is to be a minority.  I was the different one this time.  I didn’t speak the language, didn’t understand the customs, and was unfamiliar with the people there.  Everyone was nice to me, and warm and accepting, but I was definitely the minority.  I do not consider myself to be racist or prejudiced in any way, but this experience showed me how easily our differences can define us.

The pastor talked a bit about that.  He mentioned that in the USA one of the most segregated places is in the church.  People kind of separate and gather according to their kind.  White folks have their churches, black people have theirs, Spanish people have theirs, Chinese people have theirs, etc.  While there is some diversity, for the most part people do not intermingle.  It is the one place where that division seems to be the norm.  I think that maybe that is not a good thing.  There is so much that we can teach each other, so many ways that we can love and serve each other. Our cultures can enrich others and we can be enriched by other cultures.  The Bible says that in Christ there really is no viable division that we can have.  No language or culture or tradition can divide the church because it is God’s people that makes up the body of Christ.  It is God’s love that binds us.  Maybe more people need to have their comfort zone challenged like mine was challenged this morning!  I have downloaded an app to help me learn Spanish, and my goal is to become fluent myself in time.  To break down that barrier.  My hope is that I can be a part of the church becoming more accepting of each other’s differences and more comfortable with the diversity that God has placed on this earth.

Date Day

Today my husband and I had a day out together.  Life gets to be so busy sometimes, and it seems like the first thing to suffer when it’s busy is alone time with each other.  We have been married for nearly 24 years.  (That in and of itself is an amazing fact to me!)  In that time period we have been through some pretty good stuff…but  we have also been through some pretty yucky stuff.  One thing I have learned in all of it is this….The most important thing that my husband and I can do is have alone time, have time going out for the day, or time going out for a glass of wine or cup of coffee together.  Time to connect, to laugh, to learn more about each other (it amazes me how much there still is to learn after so many years together) and to dream together.  All things that we did when we were dating, but  all so very important to keeping a marriage healthy and growing.  I can look back on the yucky times in our marriage, and I know that they all stemmed from us not connecting, not dreaming, not making our relationship a priority.  We had to learn the hard way that relationships not only take work, they take a commitment to togetherness and days out.  Today we went to a museum in the mansion of a local family and did a tour and had lunch together.  We talked and laughed and amazingly, we did not talk about work or the kids!  We just enjoyed each other!

You Need To Be Present, Not Perfect: 3 Tips for Caregivers of Loved Ones with Dementia

By Jennifer Olson Crane, M.S.

In my work and in my personal life I have had the privilege to speak with people who are confronted by the reality of caregiving for a family member who is dealing with the debilitating symptoms of dementia.  One concern that caregivers consistently communicate to me is that they are “screwing it all up!” They tell me they don’t feel up to the task.  They express worry that they can’t be good enough or perfect when interacting with their loved ones.  Some of these caregivers might even be at the point of exhaustion or breakdown.

There are several tips that I urge these individuals to bear in mind each day.

1. You are only human; be sure to take care of yourself.

None of us is super human.  It is ok to be frustrated, overwhelmed, tired or even to lose your composure with your loved one.  Caregiving is a 24/7 job and it is affected by so many outside things that are not controllable that it is inevitable that frustration and fatigue will take over sometimes.

It is ok to need a break, to periodically take time for yourself.  In fact, it is not just ok, it is a necessary part of being able to be a caregiver for the long-haul.  Take advantage of family members, friends, church members, or other people’s offer to do something to help.  Ask them to come sit with your loved one, so you can take a nap, go to lunch with a friend or your spouse, or do a favorite activity.

If friends/family are not around, please consider looking into day programs or the local senior center for programs that provide respite.  One program that I am aware of charges just $10 an hour and includes lunch so that a caregiver can schedule time off.  Taking care of oneself refreshes and enables a caregiver to be much more able to take care of their loved one with dementia for the long haul.

2. When you lose your cool, apologize and move on.

Don’t beat yourself up when you lose it with your loved one.  Again, you are human.  Apologize and move on.  Sometimes the loved one is hurt by your outburst.  However, a conversation that includes an apology and an “I love you” can go a long way.  Especially before dementia progresses into late stages, people are aware that their behavior and/or speech is confused.  They don’t know what to do about it and it often helps defuse a frustrating situation to have a caregiver admit that they are confused or don’t know what to do or how to handle it either.  The two can learn together.

3. Understand it’s a new normal.

When dealing with dementia, caregivers and family are always dealing with a “new normal” in the life of a loved one affected by this disease process.  The disease process of dementia causes deterioration in the brain, is usually progressive in nature, and promotes periodic personality and functional changes in the affected loved one.  These changes are hard for caregivers and family members to watch and understand.  It is often the inclination of caregivers and family members to refer to the way the affected person “used to be” and to desire to get their loved one back to that normal.  One of the hardest realities to face is that the former version of the affected person does not exist anymore.  Who they are now and what they can do now is their new normal.  It is important for caregivers and family members to understand this new normal and how it dictates their required care.  As the dementia progresses, the affected loved one may experience additional new normals, causing the caregiver to need adapt the approach and strategy of care.

Caregiving is not easy!  No two cases of dementia are alike. The dementia process often requires a changing approach by the caregiver over time as the disease progresses.  It is challenging enough for someone experienced with dementia to navigate the path to dementia care without any missteps.  I advise caregivers not to be too hard on themselves, to get educated, and to seek regular guidance from their loved one’s healthcare practitioners.

 

About the Author

Jennifer Olson Crane is a Gerontologist and a member of Savantive LLC, a professional consulting business she started with her husband.  She has a passion to help older adults, especially individuals diagnosed with dementia, by addressing their struggles in a way that leads to positive outcomes and improved quality of life.

Jennifer educates families and caregivers about the dementia process, connecting them to appropriate resources for their affected loved ones, and providing ongoing support as the situation changes.  She writes and speaks on the topics of dementia and caregiving.

Jennifer holds a Bachelor of Science degree in Psychology (summa cum laude) from Liberty University and a Master of Science (summa cum laude) in Gerontological Services from Saint Joseph’s University.

 

(Note: The opinions and information expressed herein are that of the author and are not reflective of any current or former employer or client.)

© 2018 Savantive, LLC