Caregiver, New Obligations, New Challenges, changing world as she knew it and Major Stress!

So now I need to share some more snapshots of my time in the hospital. I really only remember bits of this time in my life and most of this is what my Wonderful wife has relayed to me.

My wife had requested a bed to be brought into my room and she just moved in! She was now definitely, in charge and she was going to take care of her Husband.

She monitored all the movements and information that she could. She wanted to find someone who could get her some answers. She asked, CAN ANYONE HELP ME FIND OUT OR GIVE ME AN ASWER TO WHAT IS THE OUTLOOK FOR MY HUSBAND? Her world has now been traumatized!

In a marriage, both parties have their own parts of daily life that they assume and perform as a partner in that marriage. Now, in her mind, In a matter of a couple of heartbeats, her husband was immediately pushing her into a very scary place, now a caregiver!`

The scary thing for her now is to try and process what this new word caregiver is,

• She will still have to perform her own normal activities as usual as part of her life,
• She potentially could now have to perform her Husband’s work,
• She potentially could now have to perform collectively both of our work,

A caregiver is one of the most needed, overwhelmed, overworked and valuable persons in the life off a disabled person. They are under thank and most time are motivated by fear, care, love and the desire to help as best they can in whatever way they can.

My wife was my best motivator and her pushing me was one part of the miracle of my recovery.

Barriers Removed?

What is a barrier?

·         Steps,

·         Narrow doorways,

·         Small bathrooms, with a bathtub only

·         Knob hardware on doors or Kitchen and bathroom fixtures 

·         Plush thick carpet,

·         Lighting (lack of it or old florescent lighting)

·         Sharp 90 degree corners on cabinet that if you don’t lean on it carefully or your hand slips, may cause you harm

·         etc..

      1.       These could be some barriers you might have in yours or a loved one’s home!

2.       What can you do to pre-plan for the future?

In your planning for a new homes, plan a,

·         Level entry to home from parking or garage area

·         Wider hallways, and doorways, using Lever hardware with return on the lever

·         Clear space in and out of rooms (for turning with canes, walker or wheel chairs)

·         Roll in or transfer shower on main level

·         Lever hardware on faucets and shower valve.

·         Hand held shower with slide rail (not a slide rail that extends out into your shower area. Slide rails are only put in the wall with a couple of small screws. There is a relatively flat one that doesn’t give a false sense if you are to slip.

·         Grabbars and hand rails or at least install backing

·         Install grabbars instead of towel bars etc..

·         18” high toilet, so you won’t have to bend down so low to use the toilet.

·         Front or side controls for range or cook top so you don’t have to reach over hot burners to adjust your stove

·         Side by side refrigerator so more items are at a more convenient or reachable level

·         Contrasting colors for grabbars or hand rails so your eyes will pick them up, more easily

·         More light in each room and less dark surrounding so that items can be seen more clearly

YOUR, Existing home
              
                   What is the Disability?

           Age, Stroke, Heart attack, MD, M/S, etc.

                              Evaluate the need, with a concern for,
                           
                                      What are today’s, needs?

What will work today and hopefully keep working tomorrow?

 What is your goal? Does living in your own home fit into your goal?

      ·    Try and stretch your need planning to at least a 2 Year window

a.       What was your access and ability in your life, 2 years ago?

b.      What is your access issues, Today?

c.       And what do you think your access issue will look like in 2 years

·         Upper and lower body strength, grasp, vision, dexterity.

·         What will work best, with the amount of room or rooms available

·         Money,

a.       What kind of funded or personal assets are available,

b.      What can you fit into that goal to stay at your home?

Some simple Solutions!

Hand held shower with slide rail

Get a shower chair for yourself

Remove glass shower doors and replace with shower curtain

·         Glass doors look nice but are a hazard if you were to fall in the tub or shower. If you should fall then time is usually the issue and the doors many times will need to be removed quickly to extricate  you or if you did break the glass in your fall, then one mess creates another etc,

·         18” toilet

·         Lever hardware on doors and faucets

·         Swing clear hinges to open doorways for clearer entry, these hinges will give you back the 1 ½” width that you takes up each time you open it. These work great!

·         Grabbars and hand rails replace towel bar to remove this handhold

·         Ramps, Threshold and exterior, long or short aluminum or wood

·         Threshold ramps rubber or aluminum.

·         etc.

Concept to Reality, why not?

I wrote this letter in, I beleive 1997 for the Home Builder Association and was read on the platform in Washington D.C. It was not well received because the builders didn't think that the added cost (minimal) was worth the effort!

 Living in a non perfect world as we all know we do, each of us are a heart beat away from the possibility of a major problem.  Each day we hear of a friend, acquaintance or a family member with a special need.  The problem could be a stroke, car accident or a slip on an icy step, this is how fast it can happen, and this is just the beginning.

Now this imaginary person could be you or a close family member. If this scenario were to happen to you, and you were unable to move freely on your own, what next? Would you have the ability to quickly set your home or living facility up to accommodate your needs?  Could you use your own bathroom or shower or maneuver throughout your own home without assistance? This is a very real situation in this life and needs to be addressed today, so that tomorrow you can be better prepared.

Universal Design is the simplest, most user friendly building concept and offers to all of us the biggest bang for our buck.  In the building industry quality, affordability and staying competitive are very important.  When using the universal design concept in your building it will add many very inexpensive but useful extras.

1.   Install wider doorways on main floor

2.Increase size of halls to 48”

3.Use lever hardware for doors         

4.Put shower on main floor.

5.   Use lever bath ware.  (There are many affordable models to choose from)

6.   Use some jobsite scraps of wood to put in backing around the toilet in the shower area, in the hallway, kitchen area etc. for easy install of grab bars or hand rail.

7.Attempt to have one easy access entry into home

 If a few of these guidelines were utilized in our every day building concept then we have the opportunity to offer a greater package for a very small amount of money.  One of the biggest feature to this design is, the people living in these home’s will have a longer time to live independently. They will be able to stay in there home atmosphere longer instead of being forced into a care facility, because they are already preparing or have prepared for the inevitable, or the unforeseen.

Duane Bishop

I am a 43 years old salesman and have been working very hard to relay to the public how easy we can accommodate more people.  In the last 3 years I have had to remove my self from the salesman role and step into the messenger role.  All I want to do know is to bring a few fairly inexpensive ideas to the table and allow more options for more people.

Access up and down a ramp for YOUR Home!

Home modifications and access to homes for the Disabled community in Washington State are a major issue. This particular issue is about the need for all involved to comply with the safety standards and the laws we have. The safety of our citizens is priority one. This is a standards issue that is constantly being compromised due to many factors such as time, lack of knowledge or money.

In regards to ramps, agencies, good intentioned Groups or organizations etc… many times are putting a couple of pieces of plywood together regardless of the height, length or safety issues. Although this seems to satisfy that need for a ramp, in many cases the problems for the person in need have just begun?

Many ramps are made to fit between the steps and the current sidewalk etc..  regardless of the actual height of, or distance needed to properly allow access. We need to comply with the 1:12 guideline. Under some conditions 1:10 is acceptable.

In some cases the surface of the plywood is left bare and this alone creates a dangerous slick and unacceptable answer. Then the next step in saving money many times is to place rolled roofing on top of the plywood to create a non-skid surface.

This (roofing/rollway matter) will only last but a short time before the wheels of the chair begins cutting into this surface. Each time the person uses the ramp the grit, designed for a roof surface not a traveled on surface begins to be tracked in and out of the house. Due to its specific designated design it will shortly begin picking up the black tar in the roofing also.

We are required to have a 5' foot level landing at the top and bottom of the ramp and many times to save money, the bottom of the ramp, is the bottom of the job. In many applications like a rural setting or main access from an alley only etc. this will create another unpleasant condition by leaving the person in the dirt, and unable to stay clean or load/unload properly.

The handrails are another item that seems to have many interpretations. The fact is many are using 2x4s placed flat on the top of a vertical post. This seems to be the fastest, cheapest and easiest answer. This is the not what was designed for a ramp handrail. Safety first, please!

These are a few of the big issues but the bottom line is we need to treat others, as we like to be treated. Good intentions, trying to save a buck and sympathy should not compromise anyone's safety or ability.

There are other ramp issues like:

1.      Locations that sometimes compromises safety so not to disturb the esthetics.

2.      Bottom landing ending in street, use of this for the level area.

3.      No use of kick rail etc…

We can chat more about this subject later!

Well, now It‘s Monday Mourning!

Another memory Snap shot!

It’s sometime the next morning and I’m still very sick, (I was told)! The doctors are trying to figure me out and they still don’t know what’s going on with me or what has happened.

Our family Dr. (Dr. John) came to the hospital. I have Zero memory of him coming into the room or how long he had been in the room before the next thing happened but,,,, Yahoo, I have another significant impact moment that allowed me this particular memory snap shot!

Dr John ran something up the bottom of my foot and my reaction to that test set off a light in his head. He immediately said something like he had a stroke and ordered up an MRI for me.

I vividly remember this moment! I can see his face, hear his voice and remember that word, Stroke while he was standing at the foot of my bed.  It was shocking to hear but then boom, thats the end of that memory snap shot.

By him running his thumb nail or an object up the bottom of my foot he was performing a test called the Babinski reflex! http://youtu.be/kOq5Np0eZ6A   Babinski reflex is an important neurologic test based, believe it or not, upon what the big toe does when the sole of the foot is stimulated.

My foot and toe reaction gave away a huge clue to my body’s secret through that simple test.

I was sent out for an MRI, (we will chat about that snap shot later) and it was confirmed that indeed did have a stroke. Thank you Dr. John for being so wise!

The MRI showed that I had an aneurysm in my right vertebral artery and the shunt of blood to my brain, had caused my stroke.

My Soul mate and the Awesome Love of my life, my Wife was relieved but now very scared because all she knew was, you have a stroke, you live for a bit, then, you Die. It was a tough mourning for her!

Now I am absolutely no help to her regarding making any real decision on basic life issues or offering help to her, etc.., she was now under a great deal of pressure. Instantly, she has been thrust into being a caregiver. She now had to think about hers, mine and our particular parts to running life, what is his outcome going to be, how are we going to pay the bills, how will we…... The caregiver role is completely overwhelming and such a vital role.

The good news, (I Don’t remembers, she told me) was that we now have a diagnosis, and a goal to work towards, we can beat it!

Sometimes, Life tosses us some really tough times but we can’t just give up over them. When these trials come up in our lives, we have two choices. We can sit around and feel sorry for ourselves and live the poor me card or we can pull ourselves up by our boot straps and start to feel, heal and deal with the daily walk.

When we take our eyes off of ourselves and look around, we will usually find that there are many others in your community that have it much worse than ourselves!!!

Have a great life!

1-more Option to help you to keeponlivingathome.com!

One question that I get asked quite often is, “Now that we need to use a wheelchair in my house, there are several doors that I can just barely get through.” What can I do?

So I try to ask a few questions.

• What kind of chair will be used, is it a power chair, manual chair a larger than normal chair?
• Do you know how narrow the doors are in your home?
• Without having to do any major work in your house, would an 1 ½” more width in the doorway give you the better access or at least get your chair in and out without rubbing?

My main reason for the questions is to see if they are aware of the size of the chair, how it fits through the doors and if not,how much too small is the doorway.

If the doorways are just barely too small or causing the chair to rub, look into installing swing clear or swing away hinges.

These hinges can be installed on your current door, with the same screws and that small 1 ½” width the current door is taking out of the actual door way opening, the hinge swing action removes.

Your door opens and closes the same way with the same effort etc..  but you will now have that extra width to get in and out of areas in your home!

Sundays Questions & Snap shots!

I was a riddle for the doctors that day! Upon my entry to the emergency room that morning till later that afternoon, I was sick but no obvious clues. I still couldn’t open my eyes without throwing up. My wife, My loving caring wife, never left my side. When I was so sick and weak, she was so calm, strong, and such a devoted concerned wife. The fear she had was hidden as strength to not put any more stress on me.

They inserted and injected me to try and get my convulsing under control. The IV was allowing me to get some fluids but I was losing it faster than they could keep it in me. The ER kept me all day with several short wobbly wheeled gurney trips to different parts of the hospital to hopefully lead to a definite answer, Why was I sick?

Later that afternoon the ER asked my wife if she would like to take me home???? She was dumbfounded. She asked if I had come in sick, I was still sick and no one has an answer to why I still can’t open my eyes and continuing to get sicker, no way was I leaving the hospital until someone comes up with the answer.

The decision was finally made and I was admitted. I really don’t remember much for the next 3 months except some snap shots of significant impactful type situations.

This is one of my memory snap shot of later that Sunday afternoon.

I am hearing some crying and sniffling in the room next to my bed. I struggled to open my eyes and looked up and saw my two daughters and wife standing in a row. I was certainly sick but couldn’t figure out why the crying? While I was struggling trying to place my thoughts together and put some logic to the sounds, I finally asked the girls, “why are you crying, did you break up with your boyfriend or something”. They all laughed at me then just like that, lights out no one was home. I don’t remember the rest of the day.

Later I will share more snap shots of humor, struggles and triumphs that were a part of my recovery, to life

What did you say, A Stroke, I’m only 43???

Sept 18^th 1994 was just another Sunday Morning!

My Wife and I had gone to the Fair the night before and we got home around 11:00 Saturday night. We had eaten some food at the fair but hadn’t done anything wild n crazy! When we got home, I sat down, put my feet up, took a breath, had a beer then went to bed.

As with many families, Sundays mornings when we it worked out, was our lazy, relax, sleep in day!

On Sunday morning, Pain was my alarm clock.  This strange head/eye ache and upset stomach was a very rude wake up call. The pain held outrageous intensity! Its throbbing, consumed my head!

The first thing that went through my head was, WOW, this really Hurts!

I had to get up and go to the bathroom, and then immediate went back to bed.

My wife looked at me and asked if everything was OK, but my mouth just mumbled, “I just don’t feel good.”

In laying there for a few more minutes trying to evaluate the severe strange pain, all of a sudden, I started seeing rotating marble sized images circling around at a slow pace inside the entire room. Now maybe I’m a little scared. What the heck is going on?

Now the intensity of this eye splitting painful headache now with bubble like images rotating in my vision and that darned upset stomach got to me!! The porcelain throne seemed to be calling me! At this time it was the beginning of my stomach turning inside out.

After my second trip to the bathroom, and throwing up, I took about two steps out of the bathroom, heading back to bed and I fell to my knees, then flat on my face on my Bedroom floor. My body was stretched out flat and both arms were above my head then it all stopped working!

At that time in my life, one of my many hats was, I was an EMT and the Volunteer Captain of the Fire Dept. Medical situations was a very big part of my real life.  Our training always included a quick ABC medical evaluation of persons on each call.

Now, I wasn’t able to move, lying on my bedroom floor, and trying to figure out my condition! ABC evaluation was fine but SCARED was now working against me.

• I can talk, but I can’t move!
• I am thinking clearly, (I thought I was) but I can’t move!
• My heart is beating normally, but I can’t move!

What the heck is going on?

Now my wife is trying to call 911. I’m telling her to just let me lay there for a while. It was my thought that this was something temporary, then after my shower if she still wants to, she can take me in and get me checked out at the ER. WHAT WAS I THINKING!

I can’t move, but I am still in denial and refusing help!

Fact: Men die more often than Women because, they live in DENIAL. It can’t happen to me syndrome. Don’t let this be you!

Now again my wife is telling me that she is going to call 911.

My though pattern was correct, but, my DENIAL or desire to not be in this situation was overrunning my common sense.

Well at this point, I am just confused!!!

My body now just started sweating profusely. At this point I remember my fear of this symptom and I agreed with my wife that help was needed. My loving wife called 911 and they came and got me.
The Fire dept extricated me from my house and hauled me off to the hospital.

I was very sick and now couldn’t even open my eyes without throwing up.

It was determined that I had a stroke. I was blown away. Me at 43 a stroke that changed my life, Forever.

My next posting will be more of this story.

I am hoping that someone, some friend or a family member who has had a stroke recently will read this and offer them a ray of hope. A flicker of encouragement.  Our goal is to try and offer to others an avenue of awareness to realize, we are all only a heartbeat away from a major issue and it could happen to YOU at any age!

We can change diets, or life style but the real thing that I would like to offer is the fact, people to people we can support each other.