BonVoyage Dear Dad

dad

My last few days with my Dad were quite poignant.  Over the months he had become more and more quiet.  No longer easily agitated or acting out.  He could spend an entire day and say absolutely nothing.  This made my Mother crazy and constantly asking him if he wanted something, but he was content.  I think he had ended the battle with his body at that time.  When he did talk it was powerful and emotional, which knowing my Father was NOT the way he normally talked.

I was in the office one day working on some bills and paperwork, when he walked in with his walker.  He said “I’m not sure exactly what you do, but I know we wouldn’t be able to get by without you.  I really appreciate you and all you do.”
I couldn’t cry then, but I did on my drive home.  He always wanted to sit next to anyone and hold their hands.  This was such a sweet man, and the man he wanted me to remember.

On a Wednesday in March, he had an eye appointment.  I didn’t want to take him, the car and getting outside made him nervous.  We had already been told there was nothing that could be done for his vision.  He lost most of the sight in one eye during his stroke 2 years ago and the other eye was doing all it could.  But, he was feeling no one was paying attention to his needs and I wanted to appease him.  So we went to the eye doctor.  And, yes he was confused, and agitated and frustrated.  They could do nothing.  We drove home and he reached over to hold my hand (as he often did in the car) and started to talk to me.  He said he was getting worried he would “forget her”.  I knew he meant my Mom. I tried to reassure him that it was my job to be his memory.  I would do my best to make sure he knew who she was.  He said “this time of life is not what I expected”.  He became very quiet after that.

2 days from that appointment, I received a call early in the morning.  “Your Dad can’t get out of bed”.  I got dressed and headed over.  When I arrived, he was standing in his underwear at the foot of the bed with his walker.  He was marching in place.  He couldn’t go forward.  This went on for quiet a while before we could get him into the bathroom.  Eventually we got him dressed and sat down at the breakfast table.  I would ask him a question, “Dad, do you want coffee?” and he would say “Do you want coffee?”.  This went on thru the breakfast and then we got him in his chair.  It was clear he had had some type of stroke.  I started making phone calls and trying to prepare what might lie ahead.  Then around 3 o’clock,  we tried to get him out of the chair.  He couldn’t bend or move.  He was no longer responding.  We literally “wheel barreled” him into the bed.  Then I called my Sister and arranged for her to come out in the morning.  Hospice brought us a hospital bed and the long vigil began.

8 days.  For 8 days he laid in that bed and didn’t eat, or drink or respond to much on anything.  One night I brought in my guitar and we sang and laughed and played music. We read to him, we held his hand.  My Mother only left his side for a few hours each day. They brought her a hospital bed too and they could hold hands at night.  His body was deteriorating in front of us.  I had NO IDEA that a body could go that long without any nourishment.  The VA came out and did a ceremony in honor of his service.  A minister came by a few times.  Then, on the 8th day I went back to my house (which I did each night) and got a call around 11:30.  He stopped breathing.  I think my initial thought was, “Thank God”.  I felt as if I had said goodbye to him numerous times through the week.  In fact I felt as if weeks ago we had our goodbyes.  The day he came into the office, the way he looked, the way he spoke, It filled me with more love for him than I could have ever imagined.  That was our Goodbye, that was our Bon Voyage.  I will miss you forever Dad.

The Waiting Game…is a Terrible Game

Image result for the game of life

It’s been a busy summer.  My Mom has seen her Grandson, both Granddaughters and all her great Grandchildren. Whew! I felt like we were running a marathon, but it was very successful.

She loves to see her Grand kids, but with each visitor I can see her grow more and more fatigued.  It’s been a hard call.  How much time to spend with her?,  how much can she handle?  I have decided to go with what makes her the happiest, not necessarily what makes her the most healthy.  Her body is filling with fluid each and every day.  Her heart is slowing being crushed.  It’s terrible to witness.  So, with that said, any amount of joy and laughter we can bring her way…we do!

But, now the company is gone and we wait.  She knows what is happening.  She cries more now than she did before.  She tells me she is scared of how weak she feels.  I can help with pain but not the weakness.  She is getting so big (because of fluid), it is getting more and more difficult for her to even get out of a chair.  This journey has had it’s tough moments, but this seems to be heading to what may be the worst.

Is it wrong that I pray that she goes now? I pray she can go peacefully. I remember a few months ago being angry with God at how long my Dad lingered in a coma.  “What are you waiting on?!” I finally just asked him.  I told him it was cruel to just wither away here, it was too hard on Mom.  Truth be told, it was too hard on me.  

Once again I sit here trying to predict the future and God once again is showing me to let control go.

It’s hard in life to make decisions for ourselves.  What should I eat to be healthy?  When should I go to the Doctor?  What makes me happy?   The list goes on and on.  But to do this for someone else who is not your child, but your parent is so very difficult.  I do not like the unknown, however I am sure most people don’t, and I yearn for control again. So as this “game of life” goes on..and on for my Mom, I grow weary of the lack of rules.  Each night I will continue to pray that her departure is quick and painless.  The waiting game will continue, and I will accept its lack of rules.

Just a spoon full of sugar…

 

marypoppins

Before I moved down to Florida, we had a private person who worked Monday thru Friday 8 to 5.  She was from a house in the neighborhood and my Mother new her.  This was working out fine the first year.  At that time we didn’t need people on the weekends or overnights.  But that soon changed.

First it was driving.  It had to be eliminated.  That was very difficult for my Dad.  Thank God his eyes were so bad, it wasn’t a choice any longer.  But that meant no one could go to the store or run an errand.  That lead to a bit of fear of being “trapped” in the house.  So, we started getting VNA (Visiting Nurse Association) on the weekends.  Soon we were getting phone calls about needing help at night.  So we got VNA for overnights on the weekdays but not on the weekends.  My father really didn’t like having them around at night, but he knew he couldn’t help my Mom much.  By the time I arrived, we had VNA at at night and on the weekends day and night and our private person during the weekdays.  Needles to say this was adding up very quickly! And even more important, my Dad was struggling with his dementia, and the constant change of people was getting too much.  I took over some of the nights and the weekend shifts.  But it was clear we needed something permanent.

My desire to go with Private care came first from a financial need.  We were currently only under contract for my Mother, but it was clear my Dad’s needs were increasing.  We were paying up to $20 an hour for my Mom and when my Dad came on board it would be $23 to $24.  Secondly, I couldn’t request a specific person (I could try but no guarantee) or give incentives.   I am a true believer that when you are treated well, you tend to do well.  I wanted to be able to give gift cards or thank you’s when things came up.  Or, raises.  I was very aware that these women were making only $10 to $15 per hour.  So, I found Care.Com.  I am sure there are many services out there that do similar things, but I had good success with these guys.  I had a few criteria I was looking for: “If you want this position, You must have a cheery disposition, Rosy cheeks, No warts, Play games all sorts”!  Ok, that was Mary Poppins, but that’s where I started.  I wanted someone they could relate to.  Understand.  This may seem prejudicial, but keep in mind, both my parents were hard of hearing.  Having care givers with thick accents was a huge problem.  So, that was something I was looking for.  Cheery disposition was important. Not too bubbly (that would drive my dad crazy) but not a Debbie downer.  I interviewed 16 people and found 2 that would work my night shifts, and they would start at $16 per hour.

This was already starting make a nice difference financially.  Now, keep in mind.  I also made sure they were both CNA’s so my parents long term health care plan would reimburse the $100 per day.

Now I had wonderful care that I could say “thank you” too with a raise in 6 months, or a gift or a card.  They “wanted” to come to work, and they soon respected my parents and myself for the way they were treated.  A spoon full of sugar really does work!

The Logistics

lo·gis·tics
ləˈjistiks/
noun
  1. the detailed coordination of a complex operation involving many people, facilities, or supplies.

When this began for me, March 1st 2016, I had a few goals in mind.

  1.  Slow down the spending. Amazing amounts of money were going out and nothing coming in. This couldn’t last, no matter how much they saved.  I needed to figure out how much it really costs to live at home and find a way to keep them within some kind of budget.
  2. Keep them in their home. This was the request from both my parents before coming down here.  My sister and I had tried multiple times discussing the idea of “assisted living” to them and they would always say “No”.  I had no idea what would be involved with their health failing, but I needed to understand it, quickly.
  3. Find private care. Both my parents were happy with the daytime person, but they were not happy with the constant change of nighttime care.  Also, my daytime person’s health was failing quickly and I needed to address it.
  4. I needed to live somewhere else.  This was the agreement I made before doing this.  I couldn’t be “in” this 24/7.  I new enough from talking and witnessing other’s that my space would become vital in this journey.

So this is where it began.  I immersed myself in the bills, the groceries and all aspects of the finances.  First step, get the Power of Attorney to as many people as I could that would need it.  Banks, CPA’s, Credit Card companies, Mortgage company and Insurance companies.  This made it so I could speak to them about issues or questions without them having to ask to “speak to your mother”!  No matter how old you are, it’s not pleasant to here that! LOL

Now that I was in it, it was not as easy as just seeing how much was going out.  There were CONSTANT changes.  Bills I didn’t expect would show up ( things like HOA dues every 3 months), doctors would change medications that were not covered by insurance. Before I moved down, there were months that almost triple the cost of Assisted living was going out!  I had researched assisted living and new we were looking at close to 6-8k as a realistic number.  I had to get it down quick. Now I realize some people are going to be questioning me as to why I am sharing such personal information as these financial figures.  My feeling is, I wish someone would have shared it with me before I started!  Do we as Baby boomers really have any clue?!  We need to be open and help each other.

I saw groceries, medications and standards bills were not going to budge much.  I did however start removing credit cards, way to many for 2 people who didn’t leave the house.  Some of the cards had monthly charges on them.  So, I started calling and finding things like AOL charging $39 every month for 2 years for a service my Mother no longer had.  Car insurance charging on more cars then they owned.  I had not realized how much was getting pushed aside when their health started failing.  I feel we should have stepped in sooner, but I can’t dwell on that, no regrets is how i live.

So, this first step is tedious and frustrating.  You so badly want them to live the life they have been enjoying, however, they need to make some changes.  It is not easy trying to persuade your parents they need to make changes.  Now, of all times!  Dad had rages easily because of his dementia and Mom struggled so with her memory, she would swear she had done something, and it had been months ago.  For this I did my best sales techniques.  Listen, don’t over talk it.  I would explain what I needed to do and then ask them their opinion.  They often would agree, but sometimes it took more persuading. A few times I had to “stand up” to my Dad.  He wouldn’t understand and then ask me if I thought I was the boss of him.  I didn’t want him to feel that way, but I could see how it must feel.  When it came to safety things like making him use his walker, I sometimes would say “Yes Dad, in this particular situation I do have to be the boss.  I know if you saw me doing something dangerous you would step in and stop me. I am doing that for you. I hope you can understand.”  He would grumble and moan (or swear and cuss me out) and then 10 minutes later be fine, and using his walker!

Life lesson:  DON’T TAKE ANYTHING PERSONAL!

So step one took months to get a handle on.  Once I got private care (I will go over that in detail later), took control of bills, found more efficient ways shop and became methodical turning in their long term health care receipts (i will go over this too), things started looking better. We were averaging the high end cost of Assisted Living with everything included.  I eventually got that down to around what would be considered a Median price.

Here is a chart of costs for Assisted Living.  Keep in mind, the “minimal” is something I have never seen.  The maximum is a place my parents might have been comfortable in.  A nice location, clean and very high rated.  My parents standards might have been high, but it is the life they worked for and had become accustomed to.

State Minimum Median Maximum

Alabama$930 $3,075 $6,524

Alaska$800 $5,703 $8,250

Arizona$1,400 $3,418 $7,072

Arkansas$1,100 $3,063 $5,900

California$698 $3,750 $10,650

Colorado$2,050 $3,750 $8,850

Connecticut$2,551 $5,575 $10,800

Delaware$5,061 $5,745 $8,175

District of Columbia$4,950 $7,838 $8,600

Florida$1,000 $3,150 $8,280

Georgia$619 $2,880 $6,840

Hawaii$1,384 $4,000 $8,892

Idaho$1,800 $3,240 $5,450

Illinois$1,278 $4,050 $9,840

Indiana$1,600 $3,693 $7,860

Iowa$1,534$3,500$9,425

Kansas$2,300 $4,188 $7,500

Kentucky$1,181 $3,350 $10,125

Louisiana$600 $3010 $4,722

Maine$1,935 $4,800 $8,880

Maryland$1,750 $3,900 $8,950

Massachusetts$1,988 $5,300 $9,495

Michigan$800 $3,250 $8,465

Minnesota$876 $3,468 $10,500

Mississippi$1,525 $3,150 $6,600

Missouri$700 $2,525 $6,400

Montana$1,000 $3,560 $6,000

Nebraska$1,985 $3,628 $6,225

Nevada$1,500 $3,238 $5,889

New Hampshire$2,750 $5,103 $8,975

New Jersey$3,280 $5,725 $11,250

New Mexico$2,000 $3,500 $6,000

New York$1,100 $4,100 $11,100

North Carolina$1,000 $3,000 $7,143

North Dakota$959 $ 3,239 $ 5,250

Ohio$877 $3,890 $8,940

Oklahoma$950 $3,345 $6,340

Oregon$2,000 $3,880 $6,955

Pennsylvania$900 $3,555 $6,955

Rhode Island$3,370 $5,325 $8,500

South Carolina$1,341 $3,125 $5,700

South Dakota$1,900 $3,023 $5,250

Tennessee$600 $3,395 $7,128

Texas$900 $3,545 $9,000

Utah$2,000 $3,000 $6,750

Vermont$1,266 $4,020 $6,050

Virginia$1,200 $3,933 $10,350

Washington$1,845 $4,625 $9,750

West Virginia$1,600 $3,500 $8,452

Wisconsin$740 $3,980 $10,000

Wyoming$2,250 $3,900 $4,695

*This chart is from SeniorHomes.com

The Journey Began…

One year ago I received the phone call.  “Laurie, your Dad and I can’t do this by ourselves, we’re getting scared”.  Up until now, I had been trying to handle some of their finances and caregivers while living in Denver, they were in South Florida.  It was becoming stressful and time consuming while trying to maintain a new business.  Now in fairness, my business was not successful.  It had potential, but I just didn’t have the strength to do this another year without getting a full time job on top of it.  That was doable, and I had the job lined up before the call.  I thought and prayed on it a lot before I made the offer.  Could I leave my kids, grand kids and family?  I had an offer to sell the business back in November (this was January).  I told my Mom I would think about moving down there, but we both needed to think and pray on it.  On that next Monday I called and said yes, she cried and said “Thank you”.

The first few months were a whirlwind.  Let me explain their condition when I got here.  Dad had dementia, prostate cancer (diagnosed just in last few years) and had a stroke that took most of his sight in one eye a year earlier.  Mom has terrible rheumatoid arthritis in her back and neck that leaves her in severe pain.  She also has congestive heart failure.  When I arrived Dad was using a cane, but very unsteady.  Mom in constant pain and struggling to move much at all.  We had hired a “day” person a year prior who worked weekdays preparing meals and cleaning the house.  This person’s job was getting more and more involved before I got here.  Doctors appointments were becoming once and twice a week.  Needs were increasing and she was running down.  I was using a nursing agency for a few nights a week for overnight and part of the weekends.

The first thing I felt I needed to do was get a hold of what was happening financially.  There was money, but not an endless supply!  We also had a long term health care plan that I just gotten my Mom using.  In this blog I am going to go over some of the things I did, things I discovered, and things I failed at.

I hope it can be helpful to the next person who finds themselves needing to “parent” their parent.