WCP Life Solutions

Repeat after me…he has Dementia…she has Dementia…

For awhile now I have had the role as a court appointed Guardian for individuals who had diminished capacity and find themselves without family or friends who can take care of them.  I should note, that for several years I have given presentations or led family caregiver support groups where individuals would come together to work through the challenges that such a role can present.  I did this through my professional role as a counselor and mediator.  I have heard from and coached dozens of families who have struggled through this most difficult and painful process.

Wow did I have it right!!  While this role is selfless, very loving, moving  and compassionate.  It is more.  It is difficult.  It is painful.  It at times can be less rewarding than fulfilling: draining and even hurtful.  As I find myself dealing with  just a fraction of what a live-in family loved one serving in the role of caregiver works through; my heart goes out even more to all of those I have met.  I get to go home and can have the phone between me and them (at least for awhile).

There are specifics of my role that are different from the more traditional situation.  These specifics bring their own level of frustrations that live in concert with the world of court, hearing, and attorneys.  But there is one thing that is constant in both worlds.

The individual we are working with has Dementia.  They look at and live within the world from a  broken perspective.  As such, their answers, their beliefs, their actions…their reality is disparate from our own.  Our loved ones, will say and do things that hurt us, and regardless of our feelings compel us one way or another.  You have given hours, days, weeks and even years of your time only to be crushed by an outburst that you are “worthless” or “incompetent.”     Take a breath….  Repeat after me…

And it will happen again if not tomorrow…next week.  Oh, and next month again.

We refer back to the “definition” I gave earlier.  They live in a broken world.  Especially in the early days of their illness.  They may even have dementia that is barely noticeable They function so highly, yet they can so easily fall into cracks and potholes that come out of nowhere.  You know that this path can instantly cause irreparable harm physically or financially – you constantly live in fear.  They do not.  Take a breath… Repeat after me…

As I live this life now with those I have counseled and coached over recent years, I am reminding myself of a few things.  Those I care for and support through this terrible disease are amazing individuals with an incredible story.  I am a part of that ongoing story.  In those moments that do not seem so amazing or incredible…it is not them.  It is the dementia.

 

–Mark Duhrkoop

A Surprise for the Holidays



I made a promise to my kids to do a colorful Christmas tree this year.  I had several vintage ornaments, and another box or so that I had received after my parents were both gone.  I had never used them, nor even looked at them since that family meeting where we dealt with the remainder of their things that had been in storage.

And I knew I didn’t have enough ornaments for the tree. Even before I got things out of storage, I went to several antique stories to gather up a few more because I was excited to put this tree together.

The day after Thanksgiving, I set out to decorate the tree.  The boxes all had to come in for me to find the ornaments.  I also set out the ornaments that I had purchased.  And then worry started to set in.  What was I going to do for a topper?

I had not picked up a vintage topper, and the ones I had seen were more than the couple dollars I spent on the ornaments.  Over the years I had used angels, stars, snowflakes and even Teddy bears for tree toppers, but what would I do for a vintage tree?

I finally found the box with the vintage ornaments from my mom.  I took out a couple of sets of ornaments when nestled there below was a vintage topper.  I had totally forgotten that I had received the topper amongst the other items.  Memories came pouring out of that box as I sat there surprised, relieved, and a little sad as well.

I suddenly saw my mom decorating the tree.  “The topper goes first. because you don’t want to break any of the other ornaments putting it on.”  Be sure and spread out the ornaments because they have to cover the whole tree.”  and “The tinsel has to go on strand by strand because it is very precious, they don’t make tinsel like this anymore.”

I would watch her take days to decorate the tree, especially that ancient tinsel which she would later take off strand by strand and pack away like it was the gift of myrrh.

And I got it.

I realized why I can be a little persnickety about the tree…why the kids have their own tree to decorate in the back room.  My mom gave me her Christmas genes!

Over three years after my mom is gone, she gave me a surprise for Christmas….that beautiful old topper, and the awareness that she is still with us.

The Farm Auction

My wife and I were just starting oustock-photo-13673705-old-farm-windmillr family when we went home to Iowa to help Grandpa prep his farm for the big auction and his eventual move to an assisted living community.  It was  like a treasure hunt as I entered the attic and found pictures of the grandmother after whom we had named our daughter as well as some of the dresses she wore in her pictures among other treasured items.  I barely got out of that hot attic that August afternoon before fainting.

The next two days were emotional for Grandpa as he saw belongings from over a hundred years of family residents hit the auction block.  There was a sense of pride as the numbers went up, but also a sadness as he realized with each item that was sold…the farm would soon be no more.

The family sensed it as well..the bittersweet emotions that come with significant change affected us all.   We dealt with it by seeking some item or another  to take home that would never live up to the memory of emotions that were being felt.

The emotions would be that much more poignant just a few months later when Grandpa passed away.  The fabric of his spirit had been knit together with that farm.  A man who had worked from dawn to dusk for the better part of a century was no match for a chair and the short walk to the dining room three times a day.

There are no easy answers…was it the wrong decision?  I don’t think so…because it was his decision.  Did he know?  Maybe.  A man who had lived on his own terms for so many years made a decision on how to die.  He chose to have that fabulous auction and see people gain enjoyment in history and memories.  He chose to make a move rather than be forced to move.  And most importantly, now physically unable to rise to the challenge, I think he chose to  die in a place where he would not see his farm fall into ruin.

Nearly 20 years later we still drive by the farm whenever we are back in Iowa.  There is an indent from the road where the driveway used to be.  Gone are the houses, the old barn and the “New” old barn.  If you look closely you still see the small windmill turning in the breeze.  And, if you tarry long enough, you might even hear Grandpa walking in peace through the trees on the farm he loved so much.

Dangerous Curves Ahead

It’s a common issue with families; when and how do we have conversations about aging and death?  However, unless we look ahead and have these conversations, invariably there is significant damage left behind.  Much like slowing down to prepare for the challenges that come with a strong curve or winding roadway, we need to focus specifically on difficult conversations.

There are numerous factors which make some conversations difficult.  Conversations around health challenges that come with aging quickly become personal.  Some physical changes as we age are embarrassing, and their treatment is not much better.  These realities bring up issues related to our gender, culture and values which are all challenging in their own way to our parents and ourselves as well. The physical & mental cost needs to be addressed.

Eventually, the changes that come with aging lead to challenges with the activities of every day living, where we live, and how we live.  Opening conversations around each of these areas can be fraught with danger as well.  On top of the physical challenges and changes we now begin to layer issues such as perceived safety, security, taste/choice, companionship and, not least of all, freedom.  There is also the very real fear that these issues will affect both parent and adult child alike. The emotional, mental costs also need to be addressed.

Ultimately, the conversations lead toward end of life decisions, Powers of Attorney, death and burial.  These are the conversations that we are most shy of due to the realization of change and loss.  We also recognize the shortness of time to resolve those issues that have been left unsaid.  And, for adult children, we are often faced with our own mortality for the first time while dealing with it’s reality in our parents.  The personal and spiritual costs are last to be addressed.

This may help:  OASIS

  • Open— crisis, planned, casual, spontaneous
    Find the way to enter the conversation; like a dangerous curve…slow down, prepare and focus on the road ahead.
  • Articulate the question/problem/issue
    Know how to handle the conditions and be as aware as you can be for what lies ahead.  Are you prepared, knowledgeable, connected (does the person perceive there to be an issue/problem/question)
  • Search for solutions
    It’s more than just slowing down;  but knowing what to do and having options that can be applied if necessary.  This is a great place to work TOGETHER.
  • Integrate options into action
    Remember that having the conversation is just the beginning.  Having a plan and following through is what is important.  You will have to have other difficult conversations, but you don’t have to start at the beginning time and time again.
  • Study and evaluate
    See the conversation as a starting point for learning.  Know that you can get better at every part of this…communicating, making decisions, focusing on legacy rather than challenges.  Build on success!

There are time that it is useful to have a neutral party help you have these difficult conversations and help with planning for aging and other eventual choices.  It is especially helpful when there is currently any family conflict or there has been conflict in the past.  Genesis Life Transitions is helpful in being that neutral coach to help you work through creating a plan that allows Mom & Dad to have their voice all the way to the end. We always provide a free consultation.

When Planning Goes Wrong

Believe me, I am a huge advocate of planning.  But there are times when planning isn’t the answer it is supposed to be, or it is not enough.  There are some pitfalls to planning that are worth going over so that our plans do all they can to minimize conflict and confusion.

1. Not reviewing your Will

Too often we create a will and forget about it. It is important to take that document out and review it to be sure it has kept up with your life situation. Your adult children might have a problem with being given into Aunt Edith’s care. More importantly, children are often left sorting out personal effects and heirlooms among themselves. This is difficult enough for families who live and work well together and fodder for significant conflict when families don’t.

2. Not defining a Power of Attorney

You have a plan, but have you given the necessary power for those decisions and plans to be carried out? Power of Attorney does not naturally pass to your spouse, and if you are incapacitated you can end up not having your loved one positioned to be your voice. Be sure and complete an adequate POA. Have a clear Directive of care and POLST on file and easily available at any given time. Take the extra step of having a signed HIPPA to be sure all things are in order with medical staff. By taking these necessary steps you save your loved ones from costly court/legal costs. You also insure your voice is carried out; dealing with rifts that the emotions of crisis can bring.

3. Picking the wrong person

We often get stuck on tradition even though that may lead to putting people in positions that they are unable to fulfill or are unsafe for them for one reason or the other.   The oldest child may not be the right fit if they have their own physical problems or deal with struggles that can mean the stress is just too great to be effective in the role of Executor. Clauses like majority vote on decisions, or even choosing a neutral third-party Executor can minimize the potential for conflict.

4. Not Communicating

It is important that your plan is recognized as a living document that needs regular care. You must also see it as more than a folder on the refrigerator. Too often plans are not put into place because no one knew there was a plan to begin with. This is the quickest way for crisis to cause conflict when it was completely unnecessary. When you have a completed plan, have a family meeting to have the difficult discussion of your eventual aging, decline and death. This is the best way to insure your family works through the challenges ahead without conflict. They will forever thank you for giving them your voice to follow all the way through.

Genesis Life Transitions is available to help you make sure you have the family plan in place to guide your family in carrying out your wishes every step of the way.  For this and other ways that we can help you with the challenges of aging, contact us through our website www,genesislifetransitions.com or call for a free 15 minute consultation.

Caregiver Guilt: “…before I’m so tired I just don’t care anymore.”

According to statistics, 29% of adults are providing some level of care to a loved one who needs assistance.  That means that over 65 million adults are taking on this challenging and often under appreciated role.  Sometimes it is not only under appreciated, but weighed down by conflict with others who simply do not understand this selfless act.

Those who devote their lives to caring for their loved one often do not know the full price they are paying and simply try to deal with the challenging emotions and struggles as best they can.  And as life is full and busy in their role, and the struggles great, they will sometimes take on and heap on guilt.

Though taking on the task with love and respect; exhaustion, and even the twinges of resentment can drift in.  At times these emotions can lead to significant guilt as one looks at the whole of their life… everything from  guilt for taking care rather than taking time, to guilt for feeling guilt.

This past week I was working with an individual who has been taking care of his wife with Alzheimer’s  and other very significant health issues for the past 8 years.  I was amazed at all he had done and the success he had had in caring for her, but he felt guilty that it was getting beyond what he could handle.  He had come to a realization though, “I need to make some changes before I’m so tired I just don’t care anymore.”

The decisions were difficult, but this selfless man was, after all these years, getting some regular professional assistance to come in and  help in caring for her.  Obviously this does a great deal in helping with the exhaustion and resentment that can set in.  He also was taking some other fantastic steps to help deal with the guilt that one can feel.  He joined a community of support and set up a period of professional counseling to help work through his feelings; setting himself up (and therefore his wife) for a successful transition.

The best answer to the difficulty of this decision and any guilt he felt, was that he was  able to realize the gift of time and energy to once again be her husband and focus more of their time together to simply being together.

Genesis Life Transitions is there to help coach you through the challenges that come through the aging process.  We are experienced in helping you focus successfully on relationships, difficult decisions, finding the right living situation for you and your loved ones or having difficult conversations with family.  Call for a free consultation and let us help you create peace for you and your family today!

Three Tips for Dealing with Role Reversal with an Aging Parent

Parents do not want a parent.  Children do not want to parent a parent. Reality . . . role reversal happens.  A physical event can trigger a very quick transition.  A stroke causing paralysis can leave the parent without the ability to independently eat, toilet, walk or conduct other basic daily activities. Or, the slow and continual march of Alzheimer’s eats away at the cognitive functions until little is left.  Here are a few tips on role reversal and how to respond:

1. Retain dignity. Your parent is worthy of respect regardless of his or her current physical or mental capacity. Do not speak in a demeaning or parental voice. You may need someone other than yourself to monitor your voice.  Most people do not realize the tone or demeanor of one’s voice when speaking to another.  Simple ways to retain dignity are appearances of dress and grooming. Keep your parent looking sharp even if nobody will see them during the day except you or the caregiver.  Allow privacy as much as possible for bathing and toileting.

2. In the case of dementia, your parent can no longer cognitively process as before and will deteriorate. A child can learn and grow, retain and improve. Your parent cannot. You can become extremely frustrated and overwhelmed at times. You have a choice to honor and love your parent in the worst of conditions, just as he or she loved you as a child.  You can return the grace your parent once provided to you.

3. Do not put your parent in a place of embarrassment and failure. As a parent declines, you can purposely push them into failure, or you can understand their limitations and find a way for them to succeed. My 84 year old mother recently had a minor accident in a parking lot. She has mild cognitive impairment. I am monitoring her progress and needed to go for a ride along to check her driving reactions and abilities.  She was more comfortable making a series of right turns rather than turning left on a very busy multilane street.  She was already nervous. So instead of pushing her to a potential point of embarrassment or failure by requiring her to turn left on a busy street, we went her long way around the block.  We went out to eat and then I drove home. 

I love my mom.  I want to keep her and others safe.  Thus, we needed to drive together.  The time will come quickly when she can no longer drive or live independently.  She is keeping up with her daily activities. I now assist her with the finances and any repairs around the house. I stop in and call more regularly.  The role reversal has begun. I do not like this path that has a mortal outcome, but I am determined to honor my mom and keep her company along the way.