Falls

On or about June, 2008, I started using a wheelchair full time when I would take a few steps and then would fall.  I didn’t want to hurt myself or fall against anything important.  The chair seemed the right thing to do.

I also moved into the living room and sat and slept on our new sofa.  I won’t say it was easy sleeping mostly upright but I felt it was better than making a bunch of noise in the middle of the night just to go to the bathroom.

I fell today for instance.  It was my “usual” and as I dumped most of what was on my food tray, I was admonished for not picking up the rest of my trash, throwing away the remainder of my empty plate and the periodicals I had were tossed as well.

Baths – Before Right@Home

I  took my last bath around July, 2008.  My wife was at a Colts pre-season game.  I was able to get from my wheelchair (which I started using full time the prior month) to the tub.  It was difficult but doable. 

The tub was removed the following November and replaced by a shower.  I thought hand holds or other such devices were being installed.  Donnie (the installer) even asked me about handles and I said to him “whatever my wife said.”  This was before what I was later told.

I didn’t get my next shower (which Jan gave us a chair) until November, 2009.  I did use a washcloth (twice?) to clean my groin area which was difficult but possible.  I did get sprayed (overhead) with Lysol as I guess I stunk badly.

I started with Right@Home later that month or next month.  That was quite a relief.  Two (or three?) times, my account was suspended as the outstanding balance was too high.  I don’t know why the payments weren’t kept up.  Just taking my income, I figured I should have had $300-500 leftover each month after all other bills were paid.  Since I was no longer apprised of how our monies were spent – mine, hers, and the “rent” paid by Bert/Alexis – I’m probably not considering everything.

On-Line Diary Comments

Here are a few comments I’ve had to my Diary.  The first one is a HS buddy who graduated with me from Patton.  The rest were from ??  Except for the first, I didn’t reply.  I kept this Diary public so it could be found.  I never meant it to be a secret.  I guess those are in my blog.

Meals and More - CICOA

On November 9, 2013, I was visited by Jean of CICOA and Angie of Right @ Home (whose company provides me my one shower a week).  The meeting lasted almost an hour.  Many things were discussed but some highlights are

• that I needed more services – that would be through a Medicaid waiver and I would get more than 1 shower a week, for instance.
• that if need be, APS would get involved.  Neglect is abuse, which is against the law.

I thought something sooner was going to happen but about a month later I received the following email.  The first part is from Jean and the rest was to Morita and Laurie, both of Amedisys, which provided care when I got my bedsore (which at first I thought was a bug bite) earlier in the year.

On 12/13/2013 9:54 AM, Sanders, Jean wrote:
Hello,

I complete a home visit for assessment with Mr Dawson on 11/8/13.  At that time, he refused to apply for Medicaid.

Mr Dawson  was referred to Home delivered meals with CICOA/Meals & More program, which is funded by Title III,

I just spoke to M&M dept today, his first shipment of frozen entrees (meals for 2 weeks each shipment) should go out to his home today.

There is no assigned Case Manager from CICOA for clients who have Meals & More program only.  I am not assigned to provide ongoing services for him.

If Mr Dawson would like any assistance from CICOA related to Medicaid application, he will need to contact ADRC (Information & Referral Dept) at 317-254-3660 or complete a new intake/referral form which is available on our website: www.cicoa.org.

Any provide may also complete a new referral using this contact information. 

Regards,

Jean Sanders
Options Counselor
CICOA Aging & In Home solutions
4755 Kingway Drive, #200
Indianapolis, IN 46205
Phone/Fax (317) 803-6150

Sent to gather info per Amedysis.

From: Drew Dawson [mailto:dcal53@comcast.net]
Sent: Thursday, December 12, 2013 10:45 PM
To: Stephanie Dawson
Cc: Moritta Nave
Subject: Applying for Medicaid

Hey there,
Need to gather the following information to determine if I'm eligible for Medicaid assistance.  Hopefully I qualify.  Once we have this, need to setup a meeting with Morita Nave (social worker), Laurie Lorinsky (nurse), both from Amedisys, and both of us of course.  Just let me know when and I'll contact them.

Please gather the following information:

- Household financial information, such as:
              Money spent on rent, house payments or heating and cooling
              Cash on hand or money in a bank account
              Income from a job or training
              Payments for adult or child care
              Unearned Income such as Social Security, SSI, child support, unemployment benefits
- Benefits I get now or have gotten in the past
              (for example, Medicaid, Medicare, Social Security, veteran's benefits, etc.)
- Medical information related to you and the people who live with you
Don't know if the VA can help but I am a Veteran (USAF - 3 yrs, 1 day).  I should have my DD214 somewhere.  I used it for our home in Westfield, 'member.
Thanks

--

Drew aka DrDOS / DCal

cc
    Morita Nave
    Laurie Lorinsky
Morita,
Please share with Laurie.  Thanks.

I’m not sure why this was said “At that time, he refused to apply for Medicaid” as I thought what was said was that my wife said I probably didn’t qualify for Medicaid because she made too much money.  I was glad to hear the words Medicaid, APS and more services.  I think I even bawled for a bit because I finally saw a light at the end of what had become a 5-year nightmare.  If she got from that I was refusing services, I sure am confused.  I sent her the following email

Jean,
Thanks for following up.  I don't remember refusing to apply for Medicare.  I thought what we discussed is what had been done up to that point which is that I was on Medicare and in order for more services (like meals - started today, Thanks) to be provided, I would need Medicaid.  I thought I remembered I would give that a try and get paperwork.  I believe we discussed APS also (as they came once before) since neglect (APS said nothing when it was mentioned) was considered abuse too.  (I didn't know that.  Thought it was just wrong but just not illegal.)
Considering my present condition it's possible I have our last meeting confused but that wasn't the impression I was under when you both left.

Please reconsider keeping the case open.  I also contacted my neurologist (Dr. Pascuzzi) about any steps (towards Medicaid) his office can help with.
Thanks again.
cc
    Dr. Robert Pascuzzi
    Morita Nave (social worker)
    Laurie Lorinsky (nurse)
P.S.  Morita, please share with Laurie.  Thanks

Drew aka DrDOS / DCal
I received the following email from Jean.  My apologies if these are out of order. 

Mr Dawson:

I apologize for the confusion….correct contact for ADRC/Information and referral is 317-803-6131. 

Website for CICOA is www.cicoa.org , you may find it informative.

Jean Sanders

From: Drew Dawson [mailto:dcal53@comcast.net]
Sent: Tuesday, November 19, 2013 9:06 AM
To: Sanders, Jean
Cc: McCord, Carrie; Angie Hamilton
Subject: Re: Initial Visit

Jean,
Thanks for your visit the other day. 
If I see this form, the best I can do is initial it.   I hope this will be enough.
If Medicaid becomes an option for me, will contacting the ADRC Department (at 317-803-6150) be the correct option?  Do they have an email or website available?  I have an easier time communicating that way.
Appreciate your time.  Take care.

Drew aka DrDOS / DCal
On 11/19/2013 6:56 AM, Sanders, Jean wrote:

Mr Dawson,

I have consulted with my Supervisor regarding your situation.

Your request for Home Delivered Meals with CICOA’s Meals and More program has been submitted for processing.  You appear to meet the eligibility criteria for Home Delivered Meals with Title III funding.

Meals and More Department should be contacting you in 2-3 weeks to further explain the program and schedule you to begin meal delivery.

You appear to meet the medical eligibility for the Medicaid Aged and Disabled waiver program, which could provide additional in home services.  At this time, I understand you and your spouse decline to apply for Medicaid, which is the funding source for these services.  I will be sending a Notice of Status form summarizing the above information.

Please sign this form as designated and return in the postage paid envelope.

Currently, CICOA does not assign a Case Manager to make quarterly follow up visits for clients utilizing Home Delivered Meals only.

If you need further assistance, please contact the ADRC Department (information & referral telephone counselors) at 317-803-6150.

I have made Amedysis Health Care and Right at Home aware of this information for the purpose of Plan of Care coordination. 

Regards,

Jean Sanders
From: Drew Dawson [mailto:dcal53@comcast.net]
Sent: Saturday, November 09, 2013 12:15 AM
To: Sanders, Jean
Cc: Angie Hamilton
Subject: Initial Visit Today

Thanks for the visit today.
My arguments for staying have been

1. I really need the internet for my studies.  Otherwise I may as well look at the walls until ...
2. I enjoy having the TV for companionship, a window to the world (news) and just being entertained.    I get DVDs from BlockBuster to watch so it feels like I'm at the movies sometimes.
3. I am in the home I purchased using the home I bought in Westfield with my G.I. Bill.  I thought we were both purchasing that one but after her divorce her credit was in shambles.  No money down worked out, however.  Otherwise, I guess we would have had to wait a few more years.  When we bought this "money pit" from her parents after they lived here for over 30 years, it accomplished several things:  they could build a home in Brownsburg, where she grew up, we were a lot closer to work and this home could stay in the family; a part I thought I always played a big part in.
4. What I can expect from my "jailer", if the past is any indication, is known.  I get a cup of coffee in the morning and a meal at night.  Somewhere else is unknown.

I don't disbelieve what you said/meant about what you can do for people in my situation.  But I live on this side of the fence and what I've been living with these past few years makes me a little leary of dipping my toe in the water since I'm the one who has to live with any consequences that may occur.  I'm not saying any would but my wife has NEVER used any foul language in our marriage, especially not directed at me - when she started cutting up my meat a few years ago, she muttered under her breath that I was a fxxxing baby; she mutters too when Roxy turns over the bathroom trash and lays down pads that the dogs use for their daily "accidents" - one of them even does both which I have to move out of the way sometimes so I can wheel myself into the bathroom - no one else changes them.

Oh - the email I wrote but never sent was

This was in '09.  I don't know for sure as he wouldn't tell me but I suspect it was my caregiver at the time.

Thanks again to you both.

--

Drew dawson aka DrDOS / DCal

On 12/13/2013 I sent this email to my doctor in case he could or needed to do something.

Thanks Drew

Nancy can you please assist with the medicaid? Thanks

Sent from my Verizon Wireless 4G LTE Smartphone

-------- Original message --------
From: Drew Dawson <dcal53@comcast.net>
Date: 12/12/2013 6:12 PM (GMT-05:00)
To: "Pascuzzi, Robert Mark" <rpascuzz@iupui.edu>
Subject: Medicaid approval

Hello Dr. Pascuzzi,
Is there anything I would need from your office to apply for or receive Medicaid?
Thanks for your time today.  Hope this finds you and family in good spirits this Holiday Season.

--

Drew aka DrDOS / DCal

I never heard from Nancy.  I’ve let him know (3/17/2014).0

Not sure what this indicates but …

Bert is the only one who asks me if I need to use the restroom before he takes a shower.  It is usually once a day in the evening.

Sometimes I need to move poop out of the way (I use a glove now) so I don’t roll over it when I go to the bathroom.  It’s sometimes not picked up by anyone else for hours even though keys are hung there by Bert whenever he gets home.  I figure if they can just step over it, its not in their way.

There are times when clothes or something else is blocking the path to the kitchen.  I don’t know if it is an oversight or something else.  When the trash is removed, some part of the bag is in the way exiting the kitchen.  I move it so I don’t roll over it.  An oversight too?

I’m not asked if my car can be used (so far Bert hasn’t needed to use it although they all have keys) or given any mail that comes for me.  I used to get DVDs from Blockbuster but we know how that worked out for them.

Alexis used to bring me a candy bar occasionally.  She used to bring a salad from Taco Bell or a burger from McDonalds.  Been a while now.

I had a visit from a physical therapist (Summer of ‘13) who recommended I get rails for the toilet.  Said it should aid me getting on/off the toilet easier, helping to prevent falls.  When I brought up the subject later that evening I was told “I’m not the only one who needs to use that bathroom.”  When the installer called later that week, I told him never mind.  In September, Stephanie took a vacation.  She said she was flying to our nation’s capital.  Seems she took my car and drove instead.  While she was gone, I fell in the bathroom and Bert was there to pick me up.  Later that day he went out and got some rails for the toilet.  Never heard if he ever got in trouble for doing that.

My first Christmas with Alexis and Bert here, they got me a 1TB external drive and some blank DVDs.  The past few years I got a neck pillow and a heavier blanket this year.

What would “you” think?

Should someone in my position have to ask if something is needed/wanted?  Having asked, if you feel the answer is couched like “what do you want now?”, should you have asked?  How should one proceed?  If there is no place to go, there doesn’t seem a choice and staying with your “jailer” is even more preferred.  As it’s getting warmer, crawling on one’s belly seems an option.

If the dogs are treated more humanely than you, what does that say about the owners?  Pooping (Roxie) and peeing (Kira) on the floor seems ok.  Just lay down more pads.  If one can step over the mess, it doesn’t need to be picked up right away.  Considering one works for the Salvation Army and one used to be a 911 operator and continues to work in the law enforcement field, I hope the reasoning they are using is that my wife is the mom and mother-in-law and that they are not being deliberately cruel.

Once my nephew (Josh) asked me if I needed something to drink.  I told him I was ok.  I was told later “he’s not at your beck and call.”  He did ask on another visit something similar, but I always answered the same way.

 

MSA

Multiple System Atrophy.  Yeah.  Never heard of it either. 

It didn’t affect me until I was 50.  I was mowing my lawn.  I had just started the side of my house when I fell over.  Now I did have a dead switch on the electric mower so it did stop immediately.  Fortunately I landed on a soft spot instead of landing on the rock I dug up long ago from my yard.  I wasn’t paralyzed as I could feel all my limbs.  I didn’t lose consciousness as I could see the street.  My body just didn’t pay much attention to me even though I did try to rise.  This lasted 3-5 minutes.  When I could, I rose.  I thought weird and continued, putting what had just happened out of my mind.

As I said, put it out of my mind until about 2 weeks later I was in my garage, getting something off a shelf, when I fell over landing on my elbow (Ouch).  I decided to see my regular doctor and since he had no answers, referred me to a neurologist.  They said I had Nystagmus and proceeded to do several barrel rolls and said they could “cure” this.  I had to wear a soft neck brace for 2 days and not move my head.  Each appointment I made thereafter I made sure they were on a Friday.  I rented some DVDs.

I was “cured” when this was done, but it didn’t fix my falling, which was becoming more frequent.

I then went to a cardiologist and did the treadmill but that was fine.  What I did fail was the Tilt Table test.  I passed out when they raised it but not sure if my BP dropped.  I was not taking nor did they give me any drugs or require fasting.

The next doctor was a back/spine specialist.  She found nothing and made the final referral.

Dr. Pascuzzi gave me three tests and my final diagnosis.  He’s been great!

Hard to imagine there are people suffering from this.  Slow, insidious.  Having all my mental capabilities and slowly losing any physical capabilities makes it difficult.  It’s like watching a bad movie in slow motion.  I have dreams about needing to go somewhere and then I wake up and realize I’m not and can’t act on what I just dreamed.

I do malware research to stay mentally busy.  (If you need some, holler.  Windows only but they probably do Mac.  (Yes.  Macs suffer too.  Viruses as well.)) 

My biggest challenge now is going to the bathroom (almost 10+ minutes) and swallowing without choking.  I’m not sure how things will work out if I ever need a catheter or am unable to eat.

Wasn’t quite what I expected

I guess I thought as most folks that in my waning years I would be cared for and loved as I thought I loved others.  If I retired or had physical/mental challenges that others would be there to lend a helping hand as I figured I would be.  I haven’t found out why yet but for some reason that didn’t work out for me.

I never saw this coming.  I was always reassured by the family I married into that all was fine.  There were some bumps in the road, as in anyone’s life, but I was never led to believe I wasn’t loved or that the love I gave wasn’t for naught.

Did it take this disease, MSA, to bring out what has happened or would things have worked out this way anyway, I don’t know.  In November, 2008, we had just purchased a new sofa.  We had several recliners up until that time and replaced them.  It was an L-shaped cloth sofa with four seats that reclined and two that also had cup holders.  It was a good fit for our space.  As with most of the decisions that concerned how something looked, that was usually done by the wife.  Not that I had bad taste but as I was color deficient (not blind as I could see color, I just needed more light than most), and from time to time would wear mismatched socks, I thought it best to leave decisions like that up to her.

Well, we were sitting on our new sofa.  We could have been watching our 42” flat screen TV (my father’s day present in 2006 – her’s was a new computer for mother’s day), I don’t remember.  She said

I’m no longer going to give into you

I’ve been doing it since Beech Hollow

I thought about that for a moment and then I said “what does that mean?”  She got up, left the room and went into our “office” where we both had desks, computers, etc.  My mind was racing at that point – I had been using the wheelchair mostly at that point (the last 5 months) as I would take a few steps and fall down; felt kind of like the stick figures at a Colts game after a TD and they would turn off the fans.

It was also about 17 months after being diagnosed (which took them 3+ years) and about 18 months since I signed my POA, which I guess I didn’t understand as I thought it was only to prevent my being forced to stay alive via a feeding tube (we were discussing the Terri Schiavo case one night during supper).

I also thought about “Beech Hollow” which was where we first lived 12+ years ago.  She had never shown or told me anything that would lead me to believe that she was doing anything other than what she wanted to do.  For example

• She quit smoking.  She had a hysterectomy to do it but did in September, 1996.  I had never asked her to but always did say I thought it was a good idea.  I had 10+ years earlier but for different reasons.  (I was very skinny (130 lbs @ 6’ tall).  I was trying to put on weight.  I gained about 50# the first 6 months.)
• She bought me as a surprise Xmas gift in 1999 a snow blower.  I’m not sure how she managed it but I went to the grocery store (I don’t remember it taking more than 20 minutes) and when I returned, there was this box in our garage.  It not only made me smile, it being a surprise from my wife, but I had never owned (or used) one before.
• She was always telling me she would become a “Carmel housewife” someday.  When we moved there, she felt she was getting too fat and unattractive.  I never said anything and always felt she was the same woman I married.
• She would always compliment me whenever I was outside chopping wood, especially if I was shirtless.  Vladimir eat your heart out!
• We held hands both in the car and while walking.
• We communicated throughout the day especially when we got cell phones (1998?).  Elizabeth had one too as we were on the “family plan”.

 

If she just let me know we wouldn’t have bought and built a home in Westfield even though we had to use my G.I. Bill and none of her credit to do it.  It would have been difficult but I never knew we both didn’t want the same thing.

A Favorite Day

One of my favorite days was when I found a stray dog (later identified as a Whippet) at a store parking lot.  I was on my motorcycle and my girlfriend held her on the short trip home.  It was April so that's what we named her.  We found out she was very smart (dragged us to the curb anytime she needed to do her business) and could chase a frisbee for hours even though her tongue would hang down as she panted.  She also escaped through our French windows (she figured out how to open them and was it lucky we were on the first floor or what?) whenever we were away too long.  I posted fliers many times and amazingly got her back.  Once she was gone for almost a month and I figured she was gone for good but someone at lunch saw the flier and knew of a friend who had found a dog and lived in a different city.  Got her back but alas for the last time.  The next time she "escaped" was for good.  I'm sure wherever she roamed, she brought a little joy to each person's life.  She was indeed special. :)  -- and Thanks for the honor!