Seeking Caregivers?

"WHERE DID YOU GET YOUR GREAT CAREGIVERS?"

From those seeking practical dementia related advice, that’s my most Frequently Asked Question to date.  The answer is, “lots of places.”  Over the years, Gary’s care needs ranged from accompanying him on a walk with him, to complete physical care.  We had a team of family, friends, volunteers from church, agency care givers, private hire care givers and home health aides (through hospice).

Perhaps you can no longer leave your loved one alone.  You need to go to work, or need respite time.  You are ready to hire a care giver.  I hope that my experiences will be helpful as you navigate this new season in your family’s life.    

For both my parents (in their 90’s) and Gary, I have used a care giving agency AND have hired my own caregivers.  Between my mom and dad, and Gary, I was managing eight caregivers concurrently, for over a year.   There are benefits and challenges with each method.  Mainly it depends on your availability and your personality. 

Many think it is not possible to have private pay caregivers and do it legally, without paying “cash under the table” to hide the income, but this is not true.  Payroll can be done properly with use of an online payroll system.  There are many payroll services, but I used Intuit.com $20/month. At hiring time, I entered the employee’s information, then each week, entered their hours and mileage if any.  Intuit generated the pay stub and I wrote the check.  Caregivers are classified as Household Employees by the IRS so you don’t have to withhold their personal income tax.  You DO however have to withhold and contribute for FICA (Social Security and Medicare) and a few other taxes, but like I said, Intuit does all this calculating for you.  Then they generate the Quarterly tax forms when they are due. 

These observations are based on my experience and are intended as an overview.  Please do your own research regarding your own situation.

This entire post (including the table below) is available as a pdf file. To print, click HERE

A couple of suggestions to get started if you choose to…

 Use an agency

 1.      Ask around for some word-of-mouth recommendations.

 2.      Call the agency to set up an interview.

 OR...Hire your own caregivers

 1.      Be sure you have the personality to hire and fire, keep records, and do payroll, AND the connections where you can find some good, qualified people.  I personally would be hesitant to advertise in the paper.  I met someone in our Alz. support ministry at our church, and also advertised for caregivers in our church opportunity sheet.  Either way, you’ll need to manage the caregivers, by training them to the specifics that your loved one needs.  (Their tastes in food, music, tv, hobbies, etc.) 

2.      Call your homeowner’s insurance.  Ask them if they cover household workers if they get injured in your home

3.      Ask around.  Talk to lots of friends and acquaintances.  Maybe someone knows someone…etc.  Run an ad in your church opportunity sheet.  State the job requirements, hours rate of pay, and the qualifications you require.

SAMPLE:  Elderly couple in Santa Clarita, need part time caregiver.  Must be able to assist with transfers from bed to wheelchair, provide transportation to appointments, (fit wheelchair/walker in trunk and have a good driving record. Assistance with phone calls.  Housekeeping (laundry, meals, cleaning, etc).  Assistance with bathing.   Certified Nursing Assistant level of experience preferred but not required.  Must have strong communication skills.  Character and/or professional references needed.  Rate: $10/hour and $.50 per mile for use of car.  2-3 days needed.  (Especially weekends) 7:00am-3:30pm.  Payroll status: “Household employee” for tax purposes.  Contact information: (your info here)

4.      Integrate the paid caregivers with the free services available.   Friends or family who offer to help regularly, Hospice aids (if hospice is involved) should be worked into the routine for your loved one.  If a friend has offered to help you on a regular basis, reduce your care giving needs by that amount of time.    

5.      Be flexible.  There may be seasons when an agency is a better fit than a private caregiver.  For instance, most of our caregivers were folks from our church, so when it became impossible for Gary to attend church with me, we had an agency caregiver who was willing to work on Sundays.

6.      Build a team.  We started with one agency caregiver, and as Gary’s needs increased over several years, we eventually had four plus a hospice aide.  If someone was sick, or planning to be out of town, it gave me some others to call on.  Sometimes my plans had to be changed, because there was no one available, but that was true with the agency too.

Take your time in deciding what to do.  It may feel like you must decide immediately but a little more thought sometimes is just what you need to be confident with your decision.  As with anything new, there is an adjustment period.  Give your choice a chance to work out, before you panic and go back to "square one."  Communicate with your new care giver to help them understand your loved one.  I truly hope you have benefited by our experiences.  Gary would be pleased as well.  

Please feel free to ask questions in the comments below. 

One, Two, Three, etc.

Today is a big day!  I finished a third "How-To" video.  I've waited to announce this series on my blog, because  it takes "three" to make a series.  This is just the beginning!  I have so many more I want to make.  After 9 years of living with Alzheimer's, Gary and I have experienced many things.  Some things have become so valuable to us, that I just HAVE TO SHARE.  If a picture is worth a thousand words, a short video is worth even more. 

 

 


My mind is flooded with ideas, so get ready to see regular additions to the Creative Ideas on my Alzheimer's page.  I'll put all three videos right here on this post.  Just click on the image to watch. 

<-----"Who Am I?" (2.5 min. Video)

(NOTE: If you are an email subscriber and are reading this post in an email you'll have to click on "View in Browser" in order to play the videos.)

 

 


 

 

Many of the ideas have come from others and the books on my Book Review section, but hopefully these short videos will be a quick help to others.

                     "What Can I Do?" (3 min. Video) ---->

 

 


 

<------"What Can I Work On?"  (3 min. Video)

The BIG IDEA here is to focus on what the loved one CAN STILL DO and help them do it.  Wishing, prodding, and hoping that they will be like they used be is only frustrating for them and sad for you. 

 

 

Please share these videos with anyone who would benefit.  You can share this post anywhere, or share the videos from YouTube. I'd love to get feedback from you too.

"Fellowship of Suffering"

Like cold water to a&nbsp;weary soul, so is good news from a distant land.&nbsp; Proverbs 25:25

Like cold water to a weary soul, so is good news from a distant land.  Proverbs 25:25

I am suffering.  It's not always intense.  It's not all the time, but I get hit with waves of sorrow as I watch the deterioration of my dear Gary's mind and body.  What encourages me most?  The comfort that comes from others.  In fact, we (my family and I), have experienced many varied blessings that ultimately come from God's care.  Reminders of what is true about God and His promises to His children, beautiful music that lifts my heart from despair to joy, opportunities to serve and enjoy this big beautiful world are everywhere. 

In 2 Corinthians 1, Paul says,"  ...the God of all comfort, who comforts us in all our affliction SO THAT we will be able to comfort those who are in ANY affliction with the comfort with which we ourselves are comforted by God."  Many folks who have served us, have never experienced anything like our trial, so don't ever think that just because you've never suffered from dementia in a loved one, that you can't offer encouragement to someone who's suffering.  According to Paul, ANY suffering qualifies ANY believer to offer refreshment in Jesus' name. 

But THIS post is about those who are going through similar difficulties.  I want to tell you about three friends.  God has been blessing me in a way I didn't expect by including me in a very special "fellowship."  Let me tell you how it started.   A bunch of us girls met in a Baptist church over 50 years ago.  In Junior High we spent many hours at slumber parties, pool parties, and summer camps together.  Oh the Laughter!!!  Over the years we drifted apart, 20 years, 30 years and 40 years for one of them, since we've been in communication.  Now we live too far away to spend time together but thanks to Facebook and email, we are back together.  We are reunited in a sort of "Fellowship of Suffering."  One of these friends is a recent widow.  Another has a husband who is loosing a battle with cancer.  Another has a husband recently diagnosed with cancer. 

We're all here in this camp photo.&nbsp; I'm in the middle row, 2nd from the left with my white "babushka" scarf.&nbsp; My 3 friends&nbsp;can remain anonymous.&nbsp;

We're all here in this camp photo.  I'm in the middle row, 2nd from the left with my white "babushka" scarf.  My 3 friends can remain anonymous. 

Who would have thought that after so long, we'd be regularly communicating.  These women know Christ.  They are ministering to me by reminding me of His great love and care.  They are not just "playing church" as I suspect many of us were as young teens, but have matured in to women of God.  We center our conversations around the relationships we have with our Savior.  They each know the loss, pending loss or potential loss of a husband, like me.  "Like me."...  There is a bond between us.  It is special.  It comes as a surprise to me, that God would bring back these friends from so long ago to be comforters in my life. 

Camp Rancho at Forest Home. 1966

Camp Rancho at Forest Home. 1966

None of us are comfortable with the idea of death taking our dear husbands.  Death is not just "a part of life."  Whether it threatens and goes away, gradually overcomes, or suddenly crashes in on our lives, we resist it.  Life is a precious gift.  Because God saved us, we are able to meet these kinds of challenges with inner peace and joy.  None of us would say we have that kind of strength in ourselves apart from Christ living in us.  A quick request for prayer via a Facebook chat, or an email to a friend can lead to the sweetest dialog with true encouragement because we remind each other that our good God is in control and we can trust Him.  Little explanation is needed with these 3 because they understand me in a unique way.

I am quite amazed at the surprises along the way as I "suffer."  One of the dearest is these ladies' ministry to me.   

"Strategery" Session

&nbsp;"Many are the plans in a man's heart, but it is the Lord's purpose that prevails."&nbsp;Prov.19:21&nbsp;&nbsp;

 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails." Prov.19:21  

Recently Becky (our caregiver) and I wrote an article for the newsletter for our Alzheimer's ministry group at church.  We called it "Logistical Strategies."  It's about adapting to the changes in our loved one.  I'm happy to share the content here because there are many photos of what we are doing to make things easier.  If you are reading this because you know and love someone with dementia, I hope this is super helpful.  If you are reading this because you love Gary and I, thank you for caring.  L.P. 

Logistical Strategies

(from the Alzheimer's. Ministry Newsletter, Grace Community Church)

Changes ahead.  Seven years ago when Gary was diagnosed with A.D., I knew changes were coming.  I knew Gary would get worse, not better.  I knew I didn't want to embrace the unfamiliar.  Wise friends and loving family have advised me at every step of the way to face the facts, accept the inevitable and try to be "ahead of the game" with our preparations.  There have been scary moments, but always, I have found that God  is right there guiding us along, and a constant companion.  Most of the time, by grace, I am able to bask in the security of God's good providential care.  "I will never leave you or forsake you" He said.  "I will incline my ear to you, when you cry for help" and just like David, He has been listening to me and caring for Gary and I. 

Life has not been without it's "tumbles" and "messiness" at times, but overall, we have continued to "adjust" to the NEW and DIFFERENT, which has given comfort to Gary and peace to me.  Be kind to your Loved One by adjusting his/her environment to suit him/her, give the gift of time to your family and friends by simplifying your life, and save own back by making use of equipment and lifestyles that fit your new phase of life.  Everyone's needs are different of course, but now that Gary is in Advanced Stages, we've been through a lot and want this personal look to serve as a visual aid in your planning and strategizing for your loved ones. 

Becky's photos and comments give the care giver's perspective so together we'd like to encourage you.

The biggest change was a new home.  One that I could manage.  I wish we'd moved sooner.  Generally, I'd say make adaptations sooner rather than later so your L.O. (Loved One) can adjust before the disease progresses.  Try to stay ahead of the needs. 

So, to you, friend, I say..."Welcome.  Come on in and I'll show you around our house!"

(Use the arrows at the edge of each photo below to advance to the next one.) 

Wondering where to start?  A wise person said...Ask yourself..."WHAT'S THE WORSE THAT COULD HAPPEN?"      

"This question will force you to look at the worst case scenario then work back from there.  It's forcing yourself to look at what could go wrong and finding strategies to do your best to prevent this."  

Take for example the tendency for falling which is usually the first symptom that something is amiss.  What is the worst that could happen?  A fall and hip fracture.  What room in the house is this most likely to happen?  Bathroom perhaps.  So we take steps to get rid of the throw rugs, we install bars etc.  You get the picture.   Whatever solutions you come up with, you've faced the worst possibility and now have ideas to stop or delay it becoming an eventuality.                 

Some of the health aids I found online, some through friends, or home improvement stores.  Many Senior Centers have volunteers who will install handrails, and ramps. Medicare provided some of the equipment too.  You don't have to make all the changes at once.  Prioritize the things you need and get the most pressing needs covered first.  When you must adapt things in your home, embrace the idea.  Look at change as an adventure.  Have a discovery attitude. 

"If you are a saint, God will continually upset your programme,

and if you are wedded to your programme,

you will become the most obnoxious creature under heaven,

an irritable saint." 

Oswald Chambers, Running Today's Race.

Photos by Becky S. and Article by Becky and Laurie

"I gotta get me some SKILLS!"

Two big changes are on the horizon.  I am not looking forward to either of them.  One is going to happen quickly, like flipping a light switch off, and the other one is more like a dimmer switch, being turned up and down erratically.  The instant change is going to happen in about 2 weeks.  The other one has already begun. 

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Change Number One:

Our dear Jason, who has served us so unselfishly for 6 months, is going to be leaving.  His work needs are changing, precipitating his move back to Florida.  I can't say enough about his kindness to us by doing all the "heavy lifting" for me.  His jokes with Gary, his professional care for him, and the laughter will be missed.  He has become like one of our own. If you haven't read the amazing story of how he came to us, Click HERE. 

Becky and Karl, on one of their many walks with Gary. 

Becky and Karl, on one of their many walks with Gary. 

Change Number Two:

Gary's needs are changing too.  Alzheimer's Disease is different with everyone.  With Gary there have been some plateaus, but mostly it's been a steady progression of decline.  As the years have rolled on, (7+ now) the progression seems faster.  It has been a month since Gary has said anything to me.  He rarely looks at me.  He is only awake about 6 hours a day.  But the worse thing seems to be his balance, and maneuverability.  The mobility issues are having the biggest effect on me.  A person alone has a very hard time walking Gary from one room to another or helping him get seated.  Standing him up is lifting dead weight.  Once on his feet, he can go for a walk with support on each side, but inside the house, it's all scissor steps, distractions and confusion so a single person has a difficult time walking him. 

So Now What?

The caregiving is going to look different and the team is going to be bigger.  ("We're gonna need a bigger boat" JAWS)  I'm using the last couple of weeks with Jason here, to try several things.  He is helping me with the transitions.  We have new equipment, and procedures that I must get proficient with.  We are trying new schedules, by condensing activities.  I am trying new "locations" for Gary during the day.  Ironically, by trying out new methods, I'm getting sore muscles, or feeling overwhelmed because of all the wasted motions, or wrong way to do things.  I'm learning though,  by tweaking HOW I do things, and in what order I do them, it's getting easier every day.

Figuring Things Out

I thought some may be interested in the process so I'll try to share some of it with you.  If you have a loved one in an advanced stage of dementia, you may find it helpful, and if not, please pray for Gary and me.  I am in great need of wisdom and grace.

Rolled up blanket to simulate torso.&nbsp; It's actually very comfortable and I think Gary enjoys riding in the "hammock."&nbsp;

Rolled up blanket to simulate torso.  It's actually very comfortable and I think Gary enjoys riding in the "hammock." 

This is a Hoyer Lift.  It's the first one I've ever seen.  If I can get proficient using it, work out the logistics of where to keep it, how to move it around, and how to place Gary in just the right place on the "hammock", then I (or any caregiver) can use it to get Gary into and out of bed, and into a wheelchair.  Without it, you need two people.  (Tried it again this morning and it was much easier than last time!)

I still have a twin bed pushed up next to his.&nbsp; I'm resisting moving them apart.&nbsp; Love being near.&nbsp;

I still have a twin bed pushed up next to his.  I'm resisting moving them apart.  Love being near. 

Gary's hospital bed is on the right.  He has actually had it for awhile, but now it's getting more use.  Giving him dinner in bed eliminates the long difficult walk to bed at night when he's sleepy.   I am learning to use the controls and the side rails to my advantage, to protect my back, and Gary as I help him with various things. 

In pulling up a movie for this photo I came across Driving Miss Daisy.&nbsp; Well, as usual, it sucked me in and I've had it on in the background all morning, and yes, it still makes me cry at the end.&nbsp; Especially now.

In pulling up a movie for this photo I came across Driving Miss Daisy.  Well, as usual, it sucked me in and I've had it on in the background all morning, and yes, it still makes me cry at the end.  Especially now.

This is a bed table.  We watch a movie, or live streaming with our dinner on the laptop.  Well, Gary listens, and I watch while I feed him, because he has his eyes shut during meals.  Don't know why, but I suspect it's too many senses going at once and he can shut out sight easily.  After he eats, he usually watches with me for about 30 minutes.  I treasure this time with him because we are doing something "together."  After I brush his teeth, I sit next to him on my bed, and work on a project or read till he falls asleep at about 7:00.

This is my pile of notes.  After a family conference a few weeks ago, we decided that I need to tackle 3 areas.   

1. Gary's well being.  What must be done, to promote his...

PHYSICAL comfort and safety

MENTAL stimulation, security, and relationships

SPIRITUAL life

2. Laurie's well being.   What must be done, to promote my...

PHYSICAL health

MENTAL stimulation, security, and relationships

SPIRITUAL LIFE

3. The finances needed to pull this off!  The Guys (sons-in-law), will help me figure this part out.

Next, I put an activity with each section.  For instance, for Gary's Physical comfort he does best with at least one 15 minute walk each morning, certain foods, and lots of naps.  To keep him safe, he can't be left unmonitored ever, and must always have 2 helpers for walking, etc. 

Time and schedules come next.  Once all our needs were written out, I needed to lay out a weekly schedule fitting caregiving into time slots. I've been brainstorming with our existing caregivers, about the changes I'm trying before I settle on a schedule.  My goal is to have the schedule figured out in a few days, so I can start lining up more help.

This is only a fraction of them. 

This is only a fraction of them. 

Getting there...but still using pencil so I can erase. 

Getting there...but still using pencil so I can erase. 

All For Good

We recently had a short visit from our daughter, April.  It was a precious time.   I don't know what I'd do without the help and encouragement of our family.  I am not in this alone.  I am confident that ALL these changes will work out for good for us.  I'm reading a great book on Romans 8:28 and plan to write a review for my Blog soon.  Being in the hands of God is a good place to be.  I'm just doing the next thing, which right now is to get Gary moved to the bedroom.  "Hoyer Lift, I will take charge of you!"

A couple times during April's visit we could tell Gary recognized her.&nbsp;

A couple times during April's visit we could tell Gary recognized her. 

There was a special visit with my parents who live across the street.&nbsp; Here's 3 of the generations together.&nbsp; My dad's 95!

There was a special visit with my parents who live across the street.  Here's 3 of the generations together.  My dad's 95!

I had a wonderful time on my birthday weekend with Sarah and April at the beach for a couple of days.&nbsp;

I had a wonderful time on my birthday weekend with Sarah and April at the beach for a couple of days. 

Our Little "Band of Brothers"

I had the most wonderful morning.  Once a month, we (Gary and I and our local family) are able to attend the Alzheimer's/Dementia Support Ministry at our church.  Things are getting pretty hard with Gary lately so today especially,  I welcomed the time with those who are in the same situation. 

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For us, it starts the night before.  Gary must get shaved, the wheelchair has to be loaded into the car (by someone strong, since it's a heavy one), and I must think through the morning schedule.  Getting Gary into the car can be challenging. (50% of the time he will not understand about stepping into the car and it can take 5-10 minutes getting him "folded in" to the passenger seat.)  So, today our son-in-law, Ryan came to help get Gary into the car. 

We have a 20 minute drive which Gary thoroughly enjoys and once at church, we are greeted at the car by helpers who help us by getting Gary out of the car, assembling the wheelchair and getting us settled inside. 

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A light but healthy breakfast is served and boy does it taste good, because I didn't have to fix it!  It's one less thing to do during a busy morning.  The coffee is SO GOOD!  Some of the ladies and family members provide the breakfast.  The centerpiece always has an encouraging verse or quote to remind all of us that we are in the good hands of God. 

Once we've had some munchies we divide into our Loved Ones and Caregivers groups.

The Loved Ones Group roughly follows this schedule.

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  • 9:00am-9:30am > Breakfast & Fellowship
  • 9:30am-10:00am > Movie (usually about God's creation)
  • 10:00am-10:30am > Go for a walk around campus
  • 10:30am-11:00am > A time of worship led by different folks, either with piano, or guitar  (They emphasize the older hymns since these are deeper in the long term memories.) 

We have very loving helpers who watch over my husband and the other gentleman, during the meetings.  They often bring their kids along who love to help out by getting another bagel or strawberries for someone.  They are learning to serve others.  Even though there are 15-20 caregivers/family who come there are only 2 loved ones who attend.  We are hoping for more to join them. 

Some Loved Ones sit in with the Caregiver group, so it's completely up to them, but for Gary, I didn't want the comments/conversation to be troubling to him, and he benefits greatly from a simpler program geared to his understanding and abilities. 

Rick McLean, our pastor of special ministries, directs our Caregiver meeting.  Recently, he has been teaching a series on Biblical JOY.  What it is, what it isn't, what steals it, and how to maintain it in the midst of suffering.  Today he talked about

Romans 15:13.  "Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit."

What a comfort that God intends for ALL Joy and Peace to be ours if we believe Him! 

Next, there is a time to meet any new people and hear their "story."  Most of these folks are rather new to the dementia experience and it's impact on a family, and so they can be discouraged, frightened, and sad.  Those of us who have been on the "road" for a while, have a chance to encourage them.  There can be quite a bit of dialog back and forth as we try to give practical and Spiritual encouragement to them.  Often there's phone numbers or emails exchanged for later. 

Original Painting for the Loved Ones group by Jini Keasling Illustrating Jeremiah 17:5-8 "For he will be like a tree firmly planted..."

Original Painting for the Loved Ones group by Jini Keasling Illustrating Jeremiah 17:5-8 "For he will be like a tree firmly planted..."

The rest of us give updates on our loved ones, and share prayer requests.  Again, we are given such good advice and courage to move ahead.  It comes from the wisdom of experience, and the truth of God's word brought to bear on any situation.  This morning someone shared how amazing that a nephew had moved to town and was helping her with her father.  This was unexpected and is really helping the family dynamic.  Another woman shared how her brother with Alz, is continuing to drive even without a license.  Many were able to counsel her with both practical ideas, and the encouragement to keep a gentle spirit as she tries to help.  I KNOW that God is listening to all of them as they pray for me and I am so happy to pray for them too.  The meeting is finished up with prayer for the group by Pastor Rick.  Occasionally we have had special events, such as a Hospice representative explaining Advanced Directives, or an artist, illustrating a Bible verse for our Loved Ones.  We also send out a monthly newsletter with great Alzheimer's resources and testimonies.

Gary is getting to the point where it's hard to decide if I should keep bringing him.  Once it becomes uncomfortable for him, or too much work for me, I will have a caregiver come to the house so I can keep going.  For now, I'm so glad that he was pretty alert this morning, had a good breakfast, was able to watch the movie, go for a walk, and hear music which is telling of the greatness of his Savior.  I'm so happy that I got to go too.  

These dear friends, whom I am bonded to, in our mutual difficulties, understand in a special way. 

2 Corinthians 1:3-4 says, "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in ALL our affliction so that we will be able to comfort those who are in ANY affliction with the comfort with which we ourselves are comforted by God."
Special Worship music with the Loved Ones

Special Worship music with the Loved Ones

God comforts me.  Through others.  Through His word.  Through providence.  That gives me the ability to comfort others.  Others in ANY affliction.  You don't HAVE to have the SAME trial to encourage someone.  We live in a fallen world that is careening out of control.  There is sin, sickness and death everywhere.  As hard as people try to escape discomfort, it's a reality.  How kind of God to encourage me.  Did you know that comfort means encourage (to give courage)?   We don't rant and rave about our situation.  We do cry sometimes as we share how hard things are, but in our little group, we are all about giving and receiving courage.