i lost my mom...

Mom and I having one of our many lunches

I hate to sound like a broken record, but it’s been a long time since my last post.

August 16 was my last post, who knew just two months later I would lose my mother.  October 14.  Just like when my father died, I was nowhere nearby.  I was on my way to see my sister on Cape Cod for her 60^th birthday.  Best laid plans…

Anyway, here’s the story.

Who knew it would be the last time mom would call the EMS to bring her to ER.  It was Friday, October 7.  I was off work that day and typically that means that I have a standing date with my mother.  However, since she was getting help from the aides for the past few months, a little bit of the weight of having to be there every time was waning.  I had already had a pretty active day, cleaning the house in the morning, CVS, McDonald’s, English Gardens.  I had gone to the back doctor earlier in the day and then needed to stop at Chase so that I could drop off some cash to my mom.  She seemed OK when I was there, a little down.  It could have been that time that she told me she was ready to go [die] or any other time in the previous weeks.  She was on a new breathing treatment medication and she was not taking to it very well.  She was not feeling well and she was having difficulty breathing.  This was nothing new to hear.  This was something she recited to me regularly, so like the boy that cried wolf, it was taken with a shrug and a nod.

I got there around 4 and then left for home shortly after when she told me she was going to lie down.  It seemed like just a few minutes after arriving at home when I got a call from the Critical Signal stating that mom pressed the button for EMS to come.  I was in disbelief because I was JUST there!  I immediately called Ray to let him know.  I’m sure there was some whining on my part about not wanting to go to sit at the ER all night.  I then called my mom’s number and Patty answered.  She was the evening aide and really seemed to have a heart for mom.  I could hear my mom in the background ordering around the EMS people.  The chaos that she invoked; always so much drama.  I heard a loud scream, which I couldn’t determine if she was laughing or crying.  I asked Patty and she replied that mom had screamed in pain.  Sometimes EMS people just don’t grab you the right way.

And there she went.  The last time she would ever be in her home.

I spoke and texted with my siblings several times that evening.  It was determined that it was Marty’s turn to sit at the ER with mom.  He told Ray that he would head over there.

Eventually she got a room.  She didn’t know it then, but she would be there for a week.

Jerome had been coming down with something for a week or so and mom put out the decree that I was not to come to the hospital, just in case I was carrying his bug.  And in the meantime, I was starting to get this strange feeling in my mouth.  A raw mouth, like you just ate a couple of bowls of Cap’n Crunch cereal.  My mouth then erupted with several canker sores.  So strange, never have experienced it before.  I called the back doctor that had prescribed me a medication that was supposed to help my back.  It was an NSAID called Vimovo.  I had started it right when I got home from mom’s that Friday and right away started having this raw mouth.  I assumed it was a reaction to the medication.  He told me to stop using it.  Too bad, since it was helping my back pain.

So, another reason to stay away from the hospital – didn’t know if I was contagious.  It was so painful; I made an emergency appointment with my dentist.  She asked if I had a history of canker sores as a child.  I told her that yes; I used to get them along my gum line – sometimes 14 at a time.  She determined that it was a reoccurrence of that virus, sort of like the shingles – if you had chicken pox as a child; the virus is still in your system and can rear its ugly head when you’re an adult.  I guess my raw mouth; full of sores did not look like hand, foot, mouth disease to her.  I would be in meetings and just sit there with my mouth gapped open, just so I could have some relief.

This was going to become an even bigger issue because I was planning on visiting my sister in MA for her 60^th birthday.  I was planning on leaving after work on Thursday.  My niece just had her baby.  The dentist told me not to go near that baby.  And don’t go near your mother whose health is already compromised.

Back to my mom – I was keeping in contact over the phone.  Tuesday morning, I was in training at work and I noticed that I received a couple of calls that went into voicemail.  I took a look at the transcriptions and one said it was “hospice”.  I shook my head in disbelief and reassured myself that the transcribers meant to type “hospital”.  At a break from the training, I had a chance to listen to the messages.  Both were from the hospital and one of those calls WAS from hospice!  I called both numbers and found that one was the nurse requesting that I bring my mom’s old breathing medication to the hospital because she’s having issues with this new medication.  The other was from the hospice that is on location at the hospital.   They told me that mom would like to have a meeting with all of us this evening to discuss her going into hospice.

I left work and drove to mom’s house, picked up all of her breathing meds and headed over to the hospital.

As I walked in the room, mom said “finally, she comes to see me”.  This made me confirm my feelings that this “hospice” thing was just for attention.  So often she seemed to do things for attention – only child syndrome.  We were always awed by how far she would go to get a little attention.  We started talking about everything and she told me that she had some instructions for me.  I felt that I should humor her, so I said that I would record it.  Good thing I did.  It’s really her final wishes – with all of her mind intact.  I stayed for about an hour.  She wanted me to take her walker home and a few other things.  She gave me her gold bracelet.  She thought that I would come right back but I needed to show my face at work.  I had not told anyone that I was going anywhere.  That evening at 6pm was our hospice meeting, so I would be back.

She summoned all of her children around her to discuss hospice with the on-call hospice nurse, Virginia.  The boys and I were physically there and Deni and Terry were on Facetime.  Virginia told us that they would put a stop to mom’s aggressive treatment that she was receiving from the time she’d been admitted into the hospital.  They would give her morphine to calm her and just make sure she was comfortable during this end of life period.  It was about a ½ hour of listening to this woman talk about mom having a hard time breathing and how she’s weak, etc.  Things we had all experienced with her for the past couple of years, at least.  THIS was no different!  Then she wanted us to ask questions.  We were all unbelievers.  We were scoffers.  We questioned the “aggressive treatments” that were only anti-biotics and steroids.  We questioned if mom were really a candidate for hospice.  And then, at the end – I got to be the signer of the document to admit my mother into hospice.  Then we left.  Surreal.

I did not go see my mother the next day.  I called.  I heard from the hospital that she was doing better and that they have a discharge day – next Tuesday.  I would need to schedule a time for the hospital bed and other equipment to be delivered.

I still had to pack because I was leaving Thursday after work for MA.  My sister’s and I came up with a great plan.  Since mom would now need 24 hour care and she only qualifies for 16 hours a day through LTC, we would need to schedule ourselves to stay with her overnight - the aides would have the daytime.  I would come up with a schedule.  In the meantime, Deni would forego going to MA for Terry’s birthday festivities and head to MI to be with mom at the hospital.  I would go to MA, do the 60^th birthday stuff and then bring Terry back with me on Tuesday, just on time to be the first person to stay with mom during the first round of shifts.  Perfect.  And so, it was planned.

Thursday, I left work a little early so that I could go visit mom before I left for my road trip.  Marty was there when I got there.  We talked for a bit and then Marty left.  She was looking eerily like dad when he was sick.  Glassy-eyed.  Frail.  I told mom that I needed to leave soon too as I was driving as far as I could tonight.  I tried to explain the plan.  She seemed uninterested.  She said “Marty left and now you’re leaving?”  I said yes, but I think Ray will be here later and I’ll be back on Tuesday with Terry – do you think you can make it until then?  She was in and out of consciousness; catching some z’s…I started backing out slowly, when her eyes were closed.  Her eyes opened suddenly and she looked at me.  I said “bye mom, see you Tuesday”.  She said “drive safe”.  I didn’t touch her.  I didn’t kiss her.  I didn’t take this seriously.  I took it for granted that she was going to be there when I returned and that this new plan with this new schedule was going to be put into action when I got home.

I broke down while driving through Canada.  I felt her leaving.  She was gone.

I spent the night just outside Buffalo, NY.  There was a bit of an incident with trying to find the correct hotel that we had reserved for me.  I had driven in the hood and gone down a dark alley and ended up in an abandoned lot.  I was a bit freaked out when I called Jerome to walk me through getting back on the highway and to the correct hotel.

I called Deni, who was on the road as well, to let her know what she was walking into.  I wanted her to know that mom looked weak and frail.  Her weight had already gone below 100 lbs. which she was hoping to get the advice of a nutritionist so that she could reverse that trend.  She joked that she wished she had this problem when she was younger.  Don’t we all.  She was informed by her Pulmonary doctor (Dr. Sikand – Absolutely the BEST and KINDEST doctor I’ve ever met!) that the weight loss was due to her condition (COPD) and that it will not be corrected.

The next morning, I left for the rest of my trip, which was going to be another 8 hours or so.  I got breakfast and then headed out.  While driving on the NY toll road, I called my brother Ray to see if the hospital called him to schedule the medical equipment.  He told me he hadn’t heard from them.  Then I was going over the new schedule with him when he told me that he is not going to be able to be a caregiver for mom.  My mind raced.  Everyone needed to be onboard with this – I couldn’t do it alone.  I came to a conclusion and said to him that I can understand that he is worried about seeing her naked.  He said “she has a catheter now”.  I paused and agreed that would be difficult.  I told him that we would be trained by the hospice people.  He clearly didn’t want anything to do with that.  I said we would talk about it later, when I get back, good news is that Deni will be there this weekend and that Terry will be there for the first week.  Then he interrupted and said that he was getting a call from the hospital now, probably to set up delivery.  He would call me back and let me know.

He called back a few minutes later to tell me that it was hospice.  They were calling the family in.  She’s in decline.  Blood is pooling in her feet.

Stunned, I hung up the phone.  What do I do first?  I’m 5-6 hours away from her.  I’m on a toll road.  I need to call someone to go there.  Get to the hospital.  I called Justin.  He picked up the phone and I told him to get to the hospital.  He left work immediately.  I called Jerome and told him the same thing.  He also left work and headed over.  I called Terry to let her know and that I would be turning around and heading back.

I finally got to an exit.  I got off and told the toll booth guy that I have to turn around.  He told me that normally he couldn’t tell me that I could do that, but what he can tell me is that there are no troopers around.  I took the hint and did a U-ey.  And then I was in a traffic jam and continually on the phone.  I had Jerome update my phone so that when I got to Canada, if I used it, I wouldn’t get charged an arm and a leg.

A couple of hours later, just as I was coming up onto the Canadian border, Ray called to tell me that she’s gone.  I pulled over into the Duty Free parking lot to cry and called Terry.  Bill answered.  They were already on their way and Terry was in the McDonald’s getting a McCafe.  I told Bill that mom’s gone.  He then relayed the information to Terry when he retrieved her from McDs.  I called Deni, who was also still on the road.  She had a moment to say some things to mom from the phone a little earlier, but Ray had said that mom was really not conscious.

Turns out that Sam and the kids had just visited and left.  Ray and his kids were outside getting a smoke and the only person in the room when she died was Justin...

It’s kind of a beautiful thing.  Justin was mom’s favorite – mostly due to proximity and accessibility.  Since I came home from Virginia in 1991 and then divorced, mom had a lot to do with helping me to raise Justin.  She was who I leaned on the most to help with logistics of having a child in a one parent home.  So, there was a sweet spot in my mom’s heart for Justin and I can only assume the feeling was mutual...

He called the time of death at 12:03pm.  The doctors were called into the room and they called the time of death at 12:15pm.  They win.

Of the daughters that were all on the road that day, Deni was the first to arrive around 3pm.  I was next at about 6pm and then Terry just around midnight.

Having been her Personal Rep both financial and health care, it was not cool to be gone when she died.  But, as she told my sister Terry, she was not waiting for anyone.

Cause of death?  On record it was the end stage COPD.  But I have a different theory.  I think she could have chosen any day in the past year or so to die.  Yes, she had COPD, some kidney issues, colon cancer, hiatal hernia but the thing I think that did her in was the congestive heart failure.  I think that since her heart was already weak, when hospice administered the morphine, it calmed everything down, even her heartrate.  This is why the blood was pooling in her feet – the heart was no longer strong enough to carry the blood all the way through her system.

We are now 4 months passed that day.  I think she would be proud of all the things that I/we have accomplished in that amount of time.  She did a lot of smart things when dad died.  She changed all of her accounts from a trust to POD and TOD to her beneficiaries.  The smartest by far was filing a quit claim deed with the township stating on the event of her death, the house would transfer equally to all five of her children.  That allowed us to put the house on the market immediately.  The first guy who saw it (the first day on the market) was the person who eventually purchased it – for cash!  That made everything so much easier.  Less bills to maintain the house.  Everyone got their portion of the money before Christmas and were able (if they chose) to give portions to their children and grandchildren and whomever else they felt a need to share.

It took until a couple of weeks ago to finally close her checking account at Chase Bank.  That account had been open since the 50’s, when it was NBD (Nat'l Bank of Detroit).  We were waiting for the Social Security office to collect their money – as I understand it, if you receive a Social Security payment in the month of your death, they will expect your personal rep to refund them and usually they will just withdraw the money from the account from which they had deposited the money.  I’ve been waiting.  Not sure how long you need to but since we passed the new year, I figured it had been enough time, so I closed the account.

I sold my dad’s wheelchair two weekends ago and also gave the van to charity.  Those were two items that held a lot of emotions and memories.  The van was a 1993 Caravan that was modified to be a handicap van.  It had 103,000 miles on it.  It was driven just a little over 4000 miles a year, average.  The engine is still as strong as ever.  The radio was good too.

Now we just have to wait until the taxes are filed and see if she owes anything – and then close her final savings account with a 5-way split.

If you would like to read more about my mom and her history, my sister Deni did a really nice write up on her blog.  You can read her posts here:
Early life state-side
Background
Mom as Mother
The Bar years
The Girl Scouts
Postscript
Josephine Marceline DeBuysscher-DeYonker