The Process Begins at Home

Everything in life (and in death) has a process.  Some of what I intend to share with you may surprise you as it did us.  The last thing I want to do is to "tax your patience" as my husband would say many times from the pulpit.  Now, that most often means a lengthy version of a short intention.  So, I'm not sure where this post will take me. But I'd like to focus most on what I've learned from Mom's residency and fall.  But I realize that my "education" has only scratched the surface.  Here is some of that education:

Home Care Tips:

• Consider giving someone POA (Power of Attorney).  Yes, this is a legal document. There is POA to handle finances and affairs and there is medical POA, and there is a combination of both.  Consider having a family member added to bank accounts.  Do this before it becomes a necessity and treat it with the utmost respect and honesty.  Also, encourage your loved ones to make a will.  There will be many reasons why this is a good idea in the end and will save a multitude of headaches as well....even if there does not seem to be any great "estate".  I could give an example of where this could go very wrong; but also many other examples of where it makes everything go like it should.  Another story for another day...perhaps.
• Make your home "elder proof":  grab bars, ramps if necessary, removal of trip hazards.  If your loved one has Home Health Services, they will usually come to your home and go through all this with you, especially after discharge from a hospital.

For video of where to place grab bars in the bathroom Click here  

For other ideas click here.

• This tub seat was really useful for my Mom since she could sit on the outside of the tub, slide over (with help) inside the tub, and use a hand held shower head to bathe.  

Click here to see image

• If you are fortunate enough to be able to convert part of your home into a mini "apartment" and bring some of your family's personal things; it can make them feel more "at home".  We were able to take two rooms and convert one to a small "living room" with Mom's couch, bookshelves and TV and keep the other room a bedroom with her own bathroom and tiny side porch.  No, it definitely was not her former house, but we were able to keep her living area comfy and "familiar".  It was important.

                                  to see some updated ideas Go here.

• Bed pads: disposables or washables (washables more cost up front, but definitely economical in the long run)
• Raised commodes or bedside commodes  Hint:  IF using a bedside commode, line with the cheaper kitchen bags and place several sheets of inexpensive plain paper toweling.  It is an easy, economical way to eliminate any lingering odor.  Just tie and dispose daily.  
• Wireless doorbells and or baby monitors give you both a means to alert each other when needs arise.   I attached one beside Mom's daytime chair, taped one around the rail of her bed for night-time, and put one beside the commode. Some of the wireless doorbells illuminate at night making it easier to find.   Of course there are other products that serve two -way conversations as well.  
•   
• Medicare will pay for many things but not everything.  Many pieces of equipment are covered, but that is not always at 100%.  Irregardless,  you must have a doctor's prescription for them.  But beware....there is an order to what is allowed when and there are limits.  
• Use a multi-day pill keeper.  Fill it for the week. And keep records.  In fact, if you can, make a medical record sheet that includes names of Rx's, strengths, quantities and times.  On the back side you can do a medical history of any surgeries, or health issues.  Be sure to include dates and, if you can, Physicians' names.  Here is a sample:  

Name:   XXX		Birthday:	Address:	Health Care:  United Health Care Medicare (combined)
RX   Prescriptions	For:	Dosage	Frequency	By:	New/changed
Felodipine ER	Blood Pressure	5 MG Tab	1xday	Dr. David
Losartan Potassium	Blood Pressure	100 MG tab	1xday	Dr. David	2/11/17
Hydrochlorothiazide	Blood Pressure/fluid	25 MG tab	1xday-morning	Dr. David
Gabapentin	Neuropathy	300 MG cap	1/ 2x day	Dr. David
Doxycycline	Adult acne	100 MG	1xday – as needed	Dr. David
Meloxicam	Knee pain	15MG	1xday - as needed	Dr. David
Gen. Medical Info:		Procedures/Surgeries:	Dates
Allergies:  none		Tonscillectomy	1956	Dr.             Hospital name
Asthma-no attacks since ~ 2003		Cyst/tumor-arm	1966
High BP		Tumor-throat/benign	1993
		Tumor-Parotid/benign	1993

It actually would not hurt a thing if all of us would carry something like this around.  When you go into the hospital, what do they ask you for?  RX info and medical history, right?  If you already have one up to date and complete, all you have to do is hand it to them.  Even every time you go to the doctor's office, they do the same thing.  So not a bad idea.  I always kept the one for my Mother up to date and printed on card stock and carried in her tote bag.  When they started with the questions, I pulled it out and they were so amazed at the organization.  Sometimes you just can't remember it all off the top of your head.

This has probably been a lot to take in.  And so I'll interject a Momma story or two here

One of Momma's favorite holidays was Christmas and she LOVED to decorate her tree, her house, her yard and she equally loved to get in the car and ride around looking at everyone else's lights.  I did it with my parents as a child....we did it with her as a little young family where she would giggle and ooo and ahhhh along with the me and the girls.   And so, I decided one Christmas that we had not done that in a while so maybe it would be fun to take her out "to see the lights".  She was EXCITED to go.  We went down to what my mother had formerly named "the healthy section of Mobile" and the lights were indeed on and beautiful.  But Mom seemed to not notice.

Me:  Momma are those lights beautiful or what!
Mom:  (looking straight ahead)  said,  ooo they are pretty!  
Me:  Mom are you looking at the lights?
Mom:  Uh huh...
We then passed right in front of a yard and house full of brilliant LED lights
Me:  Mom...Look to the right!
Mom:  (jerking her head around toward the...you guessed it...left ) says uh huh
Me:  Mom turn to the other right!
Mom:  (yep...jerks her head the other way and finally sees them...I think, but .....silence...no response)
Me:  Mom are you ready to go home? 
Mom: Yeah, I think so, Brenda Sue.  All those lights sure were pretty, weren't they?
Me:  (If you say so, Mom, I think you saw them with those eyes in the back of your head)
         We get home and she tells everyone what a great time she had looking at all those pretty Christmas lights.  So, maybe I've been looking at them all wrong all these years.  Maybe to fully enjoy them I have to look the other way. 

One more story...a "chicken-potty" story.  It's one of our favorites.
Before moving in with us to stay, Mom had bought a house nearby.  She had a few hiccups in her health and needed to go to the hospital.  The doctor diagnosed her with "encephalopathy"  
most likely due to brain damage due to lack of oxygen before her heart surgery.  Anyway, our baby daughter and her husband moved down for a period of time to stay with her.  One day they took "Granny" to do her two favorite things: Get some fried chicken and go to the park to eat.  She ate some of it but got full and our baby girl, Meagan, took the rest back for her to "eat later".  That night:

Meagan:  Granny do you want the rest of your chicken for supper?
Granny:  No, I don't think I want any more right now, maybe later.
Next day (same question, same answer)
And the next day, and the next.
I came over to check on her and she whispers "Brenda Sue, we've got a problem"
Me:  Momma what kind of problem?
Momma:  Tommy ate all my chicken.
Me:  He ate all your chicken?
Momma:  Yeah, he got my chicken I was saving out of my box and he ate it.
(Then the rant went on and on and on until finally....)
Me:  Momma if Tommy ate a piece of your chicken, don't you think changing out that potty chair everyday was worth one piece of chicken?
Momma:   SILENCE....nothing more was said, just a humph and then she left the room.

I finished my visit and went home.
Now our son in law, amongst other things, lined Momma's potty chair with a kitchen garbage bag every night, put some paper towel in the bottom of it, and set it near her bed where she would not have to walk far at night to go to the bathroom...she could still walk then, but it often wore her out.
That next morning I get a call:  

Meagan:  (laughing almost hysterically)  Mom, the potty chair is NOT worth it.
Me:  What?
Meagan:  Well, I heard her telling you that Tommy ate her chicken, but really it was me the other night.  I kept asking her if she wanted it and she kept telling me no, so I thought I'd eat it before it went bad.  Then this morning when Tommy went into the bedroom to clean the potty chair, he found it empty....moved over into the corner of the bedroom and some of Granny's things stacked on top.  So <giggle> I guess it's not worth it!
(How in the world she moved that by herself, I will never know...but we all know that a clean potty chair is NOT worth one left over piece of chicken)

I know...I know; but here's the last one for this post.  And really it's a pretty good trick to get someone to swallow their medicine, so here's the last Momma story for today  . 

Now you have to keep in mind that Mom had dementia.  At the beginning it was really, really bad.  Mom imagined all sorts of people having parties at the house and people coming to her door, including a home visit or two from the doctor....NOT !  Also the dementia had a way of making her appear to be agitated at things.  One day when our baby girl was still helping my mother at her house (mostly cleaning and cooking and transporting), she called, quite upset.  "Granny refuses to take her medicine and I don't know what to do."  So after a while my husband and I both went to the house.   And the moment I walked in the door, I asked her if she had a problem, to which she retorted, "I don't know YOU tell me."  Anyway you can see how that conversation was headed.  So we just talked a while.  Then I told her that Meagan said she would not take her medicine and that we were going to have to take it.  To my amazement, I got the medicine, put some in her little cup and she put them in her mouth.  (Mom was a WHOLE lot better than me with taking multiple pills).  And I gave her a sip of water.    But we had more to take and she hadn't swallowed, just held it all in like a bubble.  With an attitude a mile long, she just stared at me and it wasn't one of those "not at home" stares.  She was staring me down, daring me to make her swallow.  I really did not know what to do next.  I KNEW the pills she had in her mouth were bitter, but she would not swallow, would not take any more water...nothing.  My dear husband did not miss a beat.  He always said he was not her favorite (but she asked about him until the last day I saw her) but they were sometimes like oil and water....This was one of those times where I was glad, because he made a statement about something he knew she didn't like and since she had such a 'tude, she had to swallow (without thinking) to give him a piece of her mind.  I quickly took the cue and gave her the other pills which...she did put in her mouth and did take a sip of water, but again did not swallow ...But she listened as my dear sweet husband argued with her...again.  She could not stand it!  So she swallowed hard and came back with another retort.  Well...the tongue was then loosed and she gave him some more of her mind...he just smiled...and I don't think she ever figured it out.  BUT she also never refused to take her medicine again, either.  

Everyone who places their loved ones in a nursing home, does not have the same motive or reason for doing so.  Neither I nor you should self proclaim ourselves as judge and jury.  I only have observations.   My observations are summed up in these statements:

1. Some nursing facilities are top notch, smell and look clean, have caring and capable staff....and some do not.  (It is not a bad thing to look up reviews and ratings)
2. Some people admit themselves...for a variety of reasons.
3. Some family members do not want the responsibility, nor feel adequate to be a caregiver at home. 
4. Some residents have no family members or loved ones to step up to the plate.
5. Some people do not have the means or space to take in another.
6. Some people put forth enormous effort to care for their loved ones themselves at home only to come to a point where more medical care than they are able to provide is necessary.
7. Visiting a resident is fairly easy, but leaving a resident who is crying and begging for the visitor to take them home can be more than some can bear.
8. Nursing home residents can succumb to depression; but so can loved ones being cared for at home.  Their lives are changing, they are no longing feeling in control and most importantly they loose their purpose in life (at least in their minds).  And yes, some caregivers may fall pray to depression as well.
9. Only one who has been a caregiver themselves can possibly understand how demanding and difficult being the sole caregiver in a home can be.
10. Having brothers and sisters does not always equal help either at home or at a nursing home.  And being an only child can be especially "interesting".
11. It can be a challenge to listen to a complaint from your loved one knowing they also have dementia and reality is not always present.  It pays to check them out.
12. It is very easy to feel that a visit is not noticed and therefore not important.  And just like the person who stopped going to church; it all starts with one missed time.
13. It is also easy to find ways to make your loved one feel important and loved.
14. In a dementia situation, there is NEVER a time to argue the truth.  But the Lord can give you ways to answer questions and react that are honest and loving.  Sometimes silence is your friend.  (Why continually remind someone of the death of their spouse they forgot only to see them grieve time and time again.  And why is it so important to be "right"?)  They live in a world that is often frightening, because they know things are not right and then later, they actually live in that world that does not make any sense)  

Let me take a break and share a story or two  or more of daughter-fail and successes from several repeated conversations.

Mom:  Brenda Sue, I'm really worried about your Dad.  He hasn't come to see me.  Do you know where he is? (asked every time I come to visit.....for MANY visits)

Me:  I'm sure he would if he could.

Mom:  Yeah...I guess so, but I sure wish he'd stop by.  I'd really like to see him.

Mom:  (eyes glistening from tears)  I just don't know why Riley (my Dad) hasn't come to see me.

Me:  (Lord, how can I answer her?  truth?)  Mom, Dad had lung cancer, remember?  you took care of him for several years.

Mom:  I did?         So...is he dead?

Me:  Silence  (total daughter-fail...if I tell her, she will cry and grieve and probably grieve every time she asks and I say he died.  what to do?)  'Lord pleeze give me words to say'

Mom:  Well tell him to stop by when he gets a chance.

Me:  Ok, Mom I will when I see him.

then finally....a Godsend answer...

Mom:  Brenda Sue, I'm really worried about your Dad.  He hasn't come to see me.  Do you know where he is? 

Me:  Mom, where do YOU think he is?

Mom: (with confidence) Well, you know he's off fighting in that war (WWII)

Me:  (with gratitude for God's open door)  Hmm....do they let soldiers come home very often?

Mom:  Why no...not unless someone dies and I'm not dead yet!

Me:  Hmmmm.  Mom I am certain if he was able to come see you he would.

Mom:  I guess so, that's probably why he hasn't come.

Me:  (phew!)

(Now, I referred to this story in one of my previous posts on this blog, but this was a more complete version...so pardon me if I complete it...again, because it was so sweet)

Mom:  Well, Brenda Sue, you just missed him.

Me:  Missed who?

Mom:  Your Daddy came by to see me today.

Me:  (after much pause and mind racing around to figure out how she could come to that conclusion)  He did???

Mom:  Yeah, he came in and visited for a while.  He's put on a little weight though.

Me:  (with wonder, gratitude and amazement at this "gift")  Did ya'll have a good visit?

Mom:  (broad grin) We did!  Maybe you can come earlier next time and see him.

Me:  I'd like that.  So where is he now?

Mom:  Well you know he still has to go back and fight in that war.

Me:  ( I could have never been more thankful and full of joy seeing her face re-live such a wonderful "present" from the Lord.  I was to be ever so thankful, because this scenario repeated itself several times afterward, not every day, not even every week, but nevertheless I was always in awe, how the Lord enabled her to see him.  A vision? His spirit?   A dream?  Someone who reminded her of Daddy?  Does it matter?  No, it does not.  Every time it was very real to her and a source of  comfort, even a giggle or two for all of us. )

That worked out so well.  But another family member, Mom's aunt and then a cousin had passed away only a year or two before.  Mom had attended one funeral (Aunt Lucy's) but when her cousin passed, she was in the hospital and  had me send flowers.  We had spoken of both several times.  Until Mom wanted me to dial their numbers so she could talk to them.  Well....how in the world do you get out of that one.  She was pretty up on things and my feeble efforts of busy lines was not working (does a Momma really know a lying face?  ummmm I plead the 5th)  But she got really agitated with me and demanded that I get them on the phone.  So what to do?  I made the decision to tell her the truth.  Complete and utter daughter-fail.

Me:  Mom, remember, we flew to Aunt Lucy's after she died and went to her funeral.  You and I flew to Dallas and rented a car and...

Mom:  We did WHAT?  No, we didn't.  

Me:  okay (let me try cousin)  And, Annie Bell passed away when you were in the hospital in Mobile and we couldn't go...remember?  (getting in deeper)

Mom:  Brenda Sue, WHY didn't  you tell me? (That was before the deep sobs and repeated demands for why I kept these things from her)

(Broke my heart.  There was nothing more I could say.  No way out of these except the determination on my part to NEVER mention their names again and just hand her tissues and listen to her reprimand me repeatedly)

                                         ~

I've already mentioned the difference of a living will and advanced directives in my post "The Call".  You can click on the titles on the right side of this page to go there if you need to.  The idea of them was not new to me...just their application.  I came away with the understanding that being prepared either from heart to heart conversations with loved ones before the needs arises or from legal paperwork is the best possible plan.  The only downfall of such preparedness is wondering if they still feel that way or being able to produce the paperwork.  I mean we don't always get sick at home.

I love to talk....I love to write...but this is probably a good place to stop for today.  No matter what the circumstance for yourself or your loved one, the care, love and the process does, as the title of this blog says, begin at home!