Give Me a Break!

What is the one thing that Advocate’s and Caregiver’s need more than anything?  A BREAK!  I took mine whenever I could, and recently – after the estate was settled – I took one…

For almost 6 full weeks I took a break from thinking of anything that had to do with responsibility.  I tried to sleep in.  I read a couple of books.  I wandered aimlessly through the stores looking at things I would never need and really didn’t even want.  I took a break.

Medicare offers Caregiver’s a break and they call it Respite Care.  Being a caregiver is a full-time job and no one is equipped to do it alone. As a caregiver, it’s important to take good care of yourself so you can provide the best possible care for your loved one.  This time can equal an afternoon each week, or a full 5 days so you can go on vacation.  What it will do is help alleviate caregiver burnout and help you rejuvenate your energy levels.  With a little planning, you can find the support you need to help you care for your loved one.  I found a great website at http://www.helpguide.org/elder/respite_care.htm that will further explain respite care and help you find and choose the right resource for you or someone you know who could use the break.

If you know someone who is loaded down with more than their share of responsibility, do something nice for them.  Like what you ask?

• Throw a casserole together, buy a bag of salad and some fresh rolls and drop them off.
• Stop by on your way to the store and see if you can pick anything up for them.
• Out doing some yard work?  How much extra time would it really take to mow another yard?

So, my break is over.  My list of projects is growing.  And, I proved to myself that you really cannot die of boredom, you just gain weight!

 

Family Relationships – or – The Space Between Us

As a caregiver and advocate do you find yourself being pulled in different directions as you struggle to please everyone?  Well, guess what… the person you’re advocating for is the only one you have to please.  If there are siblings or other family or friends close to the situation this can get complicated.  Just keep reminding yourself that you are backing up decisions already made or that you know your loved one would want you to make.  In the end and in a perfect world, everyone around you will be thankful for everything you’ve done and will respect the personal sacrifices that you gave along the way.

I have experienced both ends of this conundrum and in the heat of it all I made mistakes in how I handled some issues, so here are some suggestions I wish someone would have given me.

1. Use today’s technology and text or email a group message to everyone when giving updates.  This way everyone is getting the exact same message.  Never, no matter how exhausted you are or how hard you’re being pushed, NEVER SEND A MESSAGE OR CALL SOMEONE IN ANGER.  You have to be able to let things go.  Find that person who will be your buffer.
   Besides my husband, my little sister was my confidant when I needed release, my shoulder when I needed to cry, and my buffer with others when I needed one.   
2. Don’t take any one person’s attitude personally even if their darts are aimed directly at you.  If something you have done for your loved one upsets them, or they don’t like a decision you’ve made, they are the one with the problem.  Hopefully in time they will see the big picture or later you will be able to talk things through.
   Though many relationships were mended in our family, there is one that is still severed.  I made a promise to my mom that I would do everything I could to fix this issue.  I’ve tried many times and I know my promise was kept and my heart is at peace.  My prayer now is that someday we will sit down and rationally discuss the past.  
3. Just because your name is on the paperwork and you’re the one signing things doesn’t mean there isn’t others who can help you carry the load.  Take all the offers you can get.
   When I moved my mom into my home my sister-in-law moved in from out-of-state and stayed a month while I got the routine down.  Then family who knew I had a weekly afternoon with friends offered to visit with mom so I didn’t have to miss my day.  I soon realized that though in the beginning it was done for me, they got much more out of their one-on-one time with mom then they ever imagined.
4. Accept the praise and gratitude when others offer it.  It is a fuel that will keep you going.  Now is not the time to be humble and shy.

My parents met on a blind date.  In the first letter my dad sent to mom after returning to his ship he included a picture, and on the back he wrote this simple poem;

Here’s to you and here’s to me,
…and here’s to the space between us.
If something has to leave, let it be the space between us.

When my dad passed mom took the lead in choosing the companion headstone and she chose to put that poem on the back of the monument.  I realized recently that her deep family values may have had another reason for putting that poem there.  Just maybe it’s a message to us all to get rid of the space between us.

 

Communication with Honesty and Trust

It is said that open communication requires honesty and trust, and in a perfect world that is true.  In the life of a caregiver or advocate I say communication is vital, honesty is prayed for, and trust is the outcome we all hope to achieve.

Today we have many forms of communicating; verbal, email, and texting.  When dealing with someone else’s life as we do when we are the advocate or caregiver how we communicate is so important.  It’s necessary to develop a rapport with someone you will need to communicate with in the future, and a telephone conversation gives it that human touch.  My advice is to let the telephone be your way of introducing yourself and setting up a form of communication that has back up such as e-mail.  If the person you will be dealing with insists on the telephone as their preferred communication then let them know you will be recording the calls.  We have all had the telephone conversation that starts with, “this call may be recorded…”, so why should we be afraid to say, “I would like to record our conversation please” when handling vital communication that you may need to have back up for later.  If you are not comfortable with this than do not communicate on the phone.

I learned a valuable lesson recently, that the telephone can take honesty and trust right out of communication.  It is surprising how many people forget an important conversation.  This became a sad reality to me after months of dealing with a professional in the process of settling my parent’s estate.  This person deals with grieving families on a daily basis, and I thought we had developed a connection over the months it took to bring things to a close.  Communication based on trust; but it turned out to be one-sided.  In the end this person would only admit to the phone conversations where a third-party was involved or those backed up by emails.  The department director had empathy for me, even said I “hit her personality on the head”, but without back up she would side with her employee every time.  So, in the end I learned that to effectively take care of your loved one sometimes it’s important to put your emotions aside and let your mind take over.  Deal with facts and make sure your emotions don’t interfere with the information you receive, but in the end stay true to the communication that’s taking place.

In my years of taking care of my parents I made it my mission to communicate with anyone involved in their care.  Communication is a critical part of being an advocate and most people we communicate with will be honest and you will be able to trust them.  Just remember they chose you knowing you would do your best for them, and that is what truly matters isn’t it?

When Calendars Hurt

Sometimes life comes at you fast and no matter what, some of those dates on the calendar hurt.  I promised myself that I would post at least once a week when I started this journey of blogging.  Being my parents’ legal advocate and caregiver, and losing both in the same year, I’ve kept that goal.  Mother’s Day was a joy to post.  The calendar wasn’t threatening, the memories were wonderful, and though there were tears and sadness I loved the day.

June has been a lot harder.  My father took a terrible fall in this month last year while in a facility he did not want to be.  Father’s Day last year was wonderful because we got to spend it with him, but horrible that I allowed myself to be convinced not to take them to their home for the day.  It was the last time I saw him; so Father’s Day this year was bittersweet.  Then came the day he passed… Too many days in this month where the scars are too deep.  So, what do we do?

I tried to turn the calendar’s page, but kept getting confused as July dates just don’t match up with everyone else’s June calendars.  And I think it’s fair to say that there is no way I can petition to have the month of June removed from the calendar.  If I did my youngest brother wouldn’t be too happy because even in his 50’s he likes to be remembered.  I can’t afford a month-long sabbatical where I can hide from everyone, and besides, who would watch the grandson’s strawberry patch and cherry tomato plants for them!

For my own survival I have decided my best route is to look at these dates on this calendar that hurts, and either find something positive to remember or learn to accept and let go of those I cannot change.  But for this first raw year I think I’ll just sneak past that calendar and wait for the days to pass.

 

Only Fools Rush In

Only Fools Rush In was a beautiful love song, but those words have so much more meaning to me now.  I just finished my second reading of a favorite novel by Jude Deveraux titled The Summerhouse.  The storyline is of three young women who meet on their 21^st birthday; each with her own dreams of success.  They then meet again to celebrate their 40^th birthday only to see that none of them had achieved their dreams.  The plot changes when they are given the chance to return to their past at a date of their own choosing, and were given 3 weeks to rewrite their lives.  Unlike the first time I read it when I really had to contemplate at what specific time I would go back, this time there was no question… January 1, 2011.  I would have spent New Year’s with my parents.  I would have been there when my mom couldn’t get up from the dinner table.  I would have changed the circumstances that led to the worst, and last year of my parents’ lives.

My mother’s condition was medical, yet we allowed ourselves to be rushed in to admitting her into the small town nursing home without first having her examined where we would have found the neuropathy and realized there was a treatment that would have taken just a few short months to work out at home.  Instead, we believed them when they said she would be safer, that they would have her examined.  We fell for the sales pitch and false promises of a small town facility that needed to fill its beds and once in we felt trapped into a system we didn’t know we could walk away from.

DON’T RUSH IN!  As the legal advocate it is your responsibility to assess situations and make choices based on the circumstances.  When my mom had decided to move closer to us girls for the winter she told my little sister, “don’t tell Karen yet or she’ll have me moved tomorrow”; Penny laughingly told me I was just “too efficient”.  In the book I mentioned above the ladies were allowed to go back knowing everything they knew at 40.  Let me be that subconscious for you now.

• When an issue arises, pack a bag (even if you live next door) and plan to stay with your loved one for at least 24 to 48 hours, rather they are going to a hospital or at their home.  This gives you adequate time to calm things if it’s an emotional issue, or consider the plan of care if it’s medical.  My mother’s condition was medical and required daily physical therapy and a medication regime that needed to be monitored and stepped up on a schedule.  Neither was provided to her at the care facility.
• Don’t agree too quickly to any one person’s advice, no matter how close or respected they are.  And on the same note, even if its family; if someone is pushing you to rush in listen to your gut and slow down.
• Once a decision is made get your requests in writing.  The facility made specific promises that they did not keep and when I challenged them I was told there was nothing in writing except the standardized papers.

My parents were mentally capable of making their own decisions, but as the issues mounted I found myself just following through with their responses without taking the time to talk through the choices.  The domino effect of going back and making that one 3-week change fantasized in that novel would have affected the whole year and both my parents.  It may not have changed the outcome but it would have made looking back a lot easier.

Lessons Learned

One of the most important processes I took from the business world into my life as an Advocate was Lessons Learned. I would love to share my top lessons learned in hopes that they help someone ahead of time.

1. SHOP AROUND
   Rather it is the home health company, hospital, doctors, and especially care centers, if you have more than one to choose from shop around. We learned our mother got better care at a hospital 60 miles away then the local favorite. When we brought her to live with us after my dad died the first Home Health Company was not a good choice so after one week mom and I started interviewing new companies. Together we picked one that was with us to the end. I wish I had not rushed into the first one mentioned. …lessons learned.
2. ASK QUESTIONS
   At the doctor’s office, the hospital, the home health nurse or aide, and especially the care centers, ask questions – lots of questions – no matter how foolish they seem. My biggest question was “why”. I ask the first home health aide why she was walking out of my parents’ home early with paperwork that showed she’d bathed my mom, only to learn she hadn’t bathed her… ever. Mom had been refusing and not wanting to lose the assignment the aide was marking all tasks complete. We went in the house and she explained how it’s done and that mom’s dignity is first and foremost. There were several aides assigned to her through the next few years and it got easier for mom to open up about the care these aides provided.
   My dad was signed up with hospice for over 6 months before he passed, and we became friends with his nurse, but we didn’t know what questions to ask. We had just spent the Father’s Day weekend with our parents and we could tell dad was weaker than our last visit, but I knew I was returning in just four days so I was shocked when the nurse called and said he’d passed two days later. Six months after his death mom was living with me when she said no more hospitals, so our home health nurse turned us over to their hospice. This nurse was right there with educated timelines that allowed mom’s out-of-state children to arrive in time to say goodbye. I would give anything to have been given that with dad …lessons learned.
3. KEEP RECORDS
   Keep a small notebook. Keep a list of contacts – every doctor, home health, pharmacy, clinic, and Medicare/Medicaid workers. The most important name wrote down when mom was placed in the care center was the Ombudsman assigned to the facility. Write down every question or concern you have so when you’re emotionally tangled in a predicament you wouldn’t have to rely on memory. I kept a medication list that showed each pill, dosage, when it was taken, and what if was for. This was very helpful in emergencies and when new medications were suggested that I knew had been unsuccessful. Finally, I kept a medical history. I would log each doctor’s visit or hospital stay; what happened, issues, prescription changes, tests administered, etc. When I had free time I typed it all nice and neat (I would have given anything for a laptop or iPad in the beginning). I knew what drugs worked and more importantly what didn’t.
4. FOLLOW THROUGH BEYOND THE END
   The job of advocate didn’t end with the passing of my parents. After dad died my mom was very involved in the planning of his funeral, and the plans were made as traditional as we were allowed. But there were things afterwards that she made very clear she didn’t want to happen at her service. We honored her changes and her service was just as spiritual and loving as dads. When we received dad’s death certificate there were errors in the Cause of Death. I immediately called the State Recorders Office who told me that only the doctor whose electronic signature was used can make the change, and he had moved on at the same time as dad’s death, and though I was able to locate him with a written request he has not responded. So when mom died the same mortuary was happy to let the family review the certificate before it was processed. …lessons learned.

I know I did a lot right, and I know I made some mistakes, but I also know that I had lots of support, help and love through this endless process. There are resources out there to help you, but only you know how far you can go. Just remember what Charlie Chaplin once said, “Nothing is permanent in this wicked world, not even our troubles.”

 

Mother’s Day Memories

“Mother dear I love you so,  your happy smiling face.
It’s such a joy to look at,  it makes home a happy place.”

I can’t remember a year when I did not sing this verse of the children’s song to my mom.  Growing up it was us girls gathering around the foot of her bed.  After leaving home I would call her and sing it over the phone; it was always a race between me and my little sister to see who could call her first.

Since I’ve been back we’ve always been with mom on Mother’s Day, and keeping with tradition Penny and I would sing this song to her the first thing Mother’s Day morning.  This year I suppose I will sit at the edge of the bed that was hers the last few months of her life and I will sing this song to her, as I probably will every year from here after.

Our Mother’s Days the past 10 years have been so much fun.  We would plan a Mother’s Day Work Weekend at our parent’s home and all their kids and grandkids were invited.  It would be the first campout of the season and we would pull our trailers and pitch tents right in their driveway, and set up a regular campground right in their front yard.  Mom and Dad would have a list of projects they’d like to see done, and we would accomplish as much as we could in the 3-day weekend.  We’ve dug a sewer line, tarred a roof, and built a wheelchair ramp and a walkout back porch.  We’ve done lots of gardening and spring cleaning.  We had barbeques in the evening and a big Sunday breakfast before packing up to head home.  Seeing the joy on their faces was priceless.

This is our first year without this wonderful tradition and I’m feeling lost.  The holiday has come upon me so fast I haven’t had time to figure it all out.  Maybe my kids will come up with their own tradition and a new era will begin.  We’ve all heard the famous proverb “all good things must come to an end”, but there are just some things that are harder to let go of than others.

As an advocate and caregiver I know where my mother has gone is so much better than her last year on this earth, and I’m really not as sad as I am lonely.  I really do miss her happy smiling face, and it really was a joy to look at, and I know it made home a happy place.

I would love to hear about your memories of Mother’s Day, and I wish everyone a very special day.

DELIRIUM VERSUS DEMENTIA

Delirium and dementia are two very similar and very frightening disorders; and delirium can easily be confused with dementia.  For those of you who have the diagnosis of dementia, you have my forever respect and prayers for the struggles of your journey.  Our journey’s battle was with delirium.

My mother’s first bout with delirium began with symptoms of confusion, restlessness, and she angered easily.  We were all so focused on her heart issues we just thought the stress was getting to her, so when the doctor found a serious urinary tract infection and diagnosed her with delirium it took weeks for the symptoms to subside.  She had many more occurrences with delirium through the years, but we learned to look for the early signs and never saw it as severe as the first time.  We were lucky in hospital settings that the staff knew the difference and knew she did not have dementia.  However, we were not as lucky with the care facility and even some family who for some reason it was just easier to accept dementia.

When we first placed mom in the care facility we thought it would be a few weeks, maybe a month.  Within the first five days she was given two psychological tests; looking for dementia.  I happened to walk in on the second test where the social worker had actually woke mom up from her nap to begin the test.  I learned that antipsychotic medications are frequently prescribed when a facility can claim dementia, making the patient easier to manage.  I realize that nursing home care has improved dramatically through the years, and most states have put strict guidelines in place, but I had no doubt that this is what was planned by this facility.  I stepped in and asserted my legal advocate rights and they backed down.  But this was not the last issue I would have trying to convince them of the importance of watching for infections and getting the correct medications in place before the delirium could set in.

So what is the difference?

Delirium

Delirium refers to multiple symptoms rather than being a disease in itself.  When a person suffers from delirium, he is said to be in an acute state of confusion. The onset of delirium is due to many reasons such as infections, dehydration, and medication side effects, to name a few.  The person becomes hyperactive, can hallucinate and becomes difficult to calm down.  However, there are cases of delirium where the person can be drowsy, lethargic, and unable to follow instructions.  If a person has delirium symptoms in hospital settings where he is getting medication and care, it is necessary to diagnose the underlying causes or can become fatal.  If diagnosed properly, symptoms of delirium are usually temporary.

Dementia

Dementia refers to loss or impairment in cognitive abilities, particularly of memory and the ability of a person to perform a task in correct motor sequence. Patient also experiences difficulty in speech and understanding what others are saying.  His sentences become incoherent and he cannot speak in a right manner.  Dementia is also a cluster of symptoms and can have many underlying reasons.  Sadly, the most common cause of onset dementia is Alzheimer’s disease.

Because they chose me, I faced some true battles in watching the care given to my parents.  I found the most important thing I needed to do was to educate myself so I could step in when it was time, back away when it was necessary, and be able to know the difference. 

Patience

The dictionary defines the word patience as “the ability to endure waiting, delay, or provocation without becoming annoyed or upset; to persevere calmly when faced with difficulties”. I’ve even heard that patience is simply a minor form of despair disguised as a virtue.

I think patience is the quality most needed as an advocate and caregiver. I found that out early in this journey and most importantly now that I’m wrapping up the last details of my parents estate. Wow, such a big word – E-S-T-A-T-E. I suppose if my parents had a big house in the city instead of their pretty little lot with a single-wide mobile home, in a small retirement town of about 1,500 people, the word would make more sense. But there are things that need to be finalized, and every time I think I can see the end of this journey I find myself trying to rush through these things. That’s when I realize my impatience is moving this journey’s end further from my sight.

For months I’ve worked to sell my parents little place and have followed all the rules put in front of me. When I signed the sales contract as …Personal Representative to… I thought my journey would be smooth sailing to the finish line. Then someone decided to change the rules and brought the process to a halt. I found myself close to running out of patience and wanted to call them, remind them of the rules; most likely making it worse. Luckily patience led me to seek advice, and that advice was to write a letter and to send it through regular mail; and most importantly, wait for a response. Patiently I waited. Days passed – surely they’ve read it! Why haven’t they called? I can’t make it through another weekend without an answer!! Friday morning came along and I was determined to make that call. Then it hit me; my biggest weakness is my habit of moving too fast. So I decided to be patient and wait, as emotionally draining as that would be.

Saturday morning when the mail arrived there was the return receipt from the letter I mailed with a received stamp of Friday; it hadn’t even been reviewed. I sat for a moment in the silence and said a little thank you prayer for patience. As I sat quietly contemplating what could have happened I was reminded that I have other qualities on my side in this phase of my journey. Honesty –Truth – Common Sense. This will work out as long as I keep patience at the top of that list.

Maybe it’s just not time for my journey to end. Whatever journey you find yourself on my advice is to be patient, the best part might be just a day or two away.