Attending a Huntsville Alzheimer's Association Conference

Met a speaker, Chanda Mills Crutcher, founder of American Senior Assistance Program, who really had common sense about seniors and caregiving. Her friend had wanted us to meet and we did! She even had me rap at the end of her talk. 

I did my rap about helping seniors. Oh my goodness! They were recording me in the audience! Bad hair day as usual! They just needed to see this on YouTube where it is called "Technology" by my producers. 

Also talked with Sally who is the 24/7 caregiver for her mom. She was on the verge of tears. I emailed several in her church who might be able to help. 

One excellent workshop was on Alzheimer's proofing the home by Jason Parks, Lead Pastor & Chief Executive Officer, Refuge Church. I wish I had had that workshop years  ago. If you have been following this blog you know that I went through "The House That Cleans Itself" several years ago and with each room I thought about safety for the home. Hope to get together with Jason for input on that dissertation. 

This workshop was in The Cooper House auditorium -- a facility owned by the church I attend. 

Cooper House With Large Auditorium in Back

Walking to workshop with church in the background

Back to writing my caregiving dissertation while seeing that Sally gets respite from her church. 

Carol

Taking Care of My Grandfather: Guest Post

Janeen at Strawberry Crest High School

This was a simple assignment I gave at the beginning of January at the high school where I have been assigned as a substitute for the month of January until the school can hire a new teacher. 

What is the greatest gift you have been

given and what are three reasons why?

I was very surprised to get this heart-warming answer from sophomore Janeen, who has as a career goal to be a Cardiovascular Surgeon. For a summer she received the gift of helping to take care of her grandfather who passed away two years ago. She is so glad she did and her memories of helping him are amazing. This photo and writing are used by permission of her family. 

The best gift that I have received this year was being able to get through another year without my grandfather. Yes, it seems like a weird present to be grateful for, but when I explain more you will understand. When it came to my grandfather's death, everyone saw it differently. 

For me, I was relieved. You see, my grandfather had a disease called dementia, king of like Alzheimer's, but a little more complicated. In his last year I got to be by his side during the summer. At first it hurt, but then I got to experience the good--such as watching old westerns and hearing him laugh or when he lost his leg and cried in the ICU. Actually he let us get closer to him and take care of him. It really touched my heart.

So when he passed away of course I was sad, but at the same time, I was happy to know he isn't in pain anymore. Every year I remind myself he is okay and I will be too. 

"Loving Her Husband" by Linda Bukowy

My creative friend, Linda Bukowy, writes poems for people. Her book, Treasures, published by Genie Publishing, has poetry she has written over the years. Here is the poem she wrote for me on the occasion of my husband's recent death.

If one could describe a caring heart

It would be named our loving Carol,

In all you did it showed forth love

Love that was poured into you from God above,

In all your times of loving care,

In sickness and health you were always there,

A loving caregiver is such a gift,

Being there for each other gives you both a lift,

Giving someone the gift of your time,

It says no matter what you are all mine,

To offer comfort in their greatest need,

Needing a touch from you, you follow their lead,

then it comes time to let them go,

You are able to, because you love them so,

No more sorrow, no more pain,

Only love, joy, peace, eternity to gain,

And when they go home to the greatest Caregiver of all,

God knows them by name, they have answered His call. 

Thank you, Linda, for penning a poem for me and sharing in my grief. 

____________________________

Not to miss a beat in finding new markets, Hallmark has an apropos card as pictured above. It says:

New Cards for After Alzheimer's

Even through the twilight

that fell upon your loved one's mind,

the light of your love and care 

continued to shine,

bringing more comfort

than you may know.

And inside it reads:

You gave so much of yourself

in the face of great loss.

What a beautiful testament to your love

and to the importance and dignity

of a life we will never forget. 

Yes, Sweetheart, I will always love you and look forward to our reunion in Heaven. It was a privilege to be one of the select few who were able to comfort you at the end of your life and to remind you and us all of the hope of the Gospel.

Thanks to everyone for your cards, condolences, and hugs.

Blogging and Prayers

1. 
   

   (In)Courage blog put out prayer requests. I prayed for someone and typed the prayer, and then added my own prayer request. Below you see my prayer request and how leanney prayed for me. 

2. Also, please pray for my journey as a caregiver for my husband who has dementia and walking difficulties. The walking is improving, but he is going into a hallucination stage now and I need wisdom for how to handle this. Will be blogging about this. Also pray for my counseling dissertation on being a caregiver–a situation I am living out. Pray that I accept the road ahead, bear the burden than He has given me with His strength.
3. 28
   leanney says:

   NOV 3, 2013 AT 9:58 AM
   Dear Heavenly Father,
   I pray that you will bring daily courage to Carol. Losing a loved one to dementia is a heartbreaking experience. I pray that you fill her heart with love and peace and she so unselfishly loves and provides for her husband.
4. So, how can I pray for you? 

YouTube Videos

Do you have a YouTube account and subscription?  I found out I do. Google helped connect all of my blogging and Facebook and Google Plus and so at the top of this Google dashboard is a YouTube tab. I can manage subscriptions so new YouTube videos come on my email. Oh my goodness! I also have YouTube on my iPhone! I can hear and see videos on Alzheimer's that my husband doesn't see during a school planning period instead of listening from our den computer. (I really do not want him to worry about his Alzheimer's by hearing a YouTube video at home. I keep his life as calm as possible.)

Singer Amy Grant's father has dementia and she put out a warm YouTube video called Amy Grant's Three Caregiving Tips here. Very nice.

Author Linda Born is one of the first books I reviewed here. Now Linda has just announced her YouTube videos on her book and I went there and subscribed. Two videos are out and my subscription will alert me by email when more are out.

Week One: Hold to Hope 

https://www.youtube.com/watch?v=oh-oxFRx8s8

Week Two: Steps to Take As a New Caregiver

 https://www.youtube.com/watch?v=DacNj8ExYFQ

This promises to be a great series. Thanks, Linda.  

One video here is on Alzheimer's Coaching and Remembering4You. I got that link on Joe's blog and I was the first to subscribe on YouTube.

But wait! I am now on YouTube!!!!

I write on the board

MC AC raps at the end of good classes.

Yes, I now have a new YouTube channel for my raps thanks to my Alabama high tech family. Nine raps were video taped several months ago and are coming out this summer on three YouTube videos (three raps per video).

When do I rap? For several years I have practiced  my raps during the last five minutes at the end of every on-task class when I susbsitute teach in middle school and high school. It takes sometimes months to write a rap and currently I am working on more raps.  Right now there is a wonderful YouTube commercial for the raps of MC AC The Rap Lady.

How was this name chosen? My niece and nephew decided on this name. I guess MC is for Ms. Carol and AC is for Aunt Carol. They have always referred to me as AC.

How did I have time to do this video? I don't. My family are producing them and they are doing a very professional job with these videos.

How does a senior citizen get into rappping? When I wrote Getting Off the Niceness Treadmill, I put a poem on social media in the ninth chapter and found I could "rap" it. I have added lines to that rap as more social media have come out. Then I started writing more raps so I would have more material when I substitute. The benefit for being good all class period is that Mrs. Johnson (AKA MC AC now) will rap.

Students I substitute teach for keep teaching me what works and what doesn't work in a rap and so I keep adapting and improving my raps.  Friday one high school girl said she was stopping being a bully because of one of my raps. Her friend said she no longer is a drama queen because of my "Use Your Mind, Not Your Emotions" rap. Especially now at the end of the school year it helps to have this aid for keeping control, although I wish our tax refund had come and I didn't feel I have to substitute teach now. We will be so poor if that tax refund doesn't come soon! IRS what are you doing? Just testifying in Congress??? 

Do I study other rappers? No. Sometimes I explain it is a poem if students say it is not really a rap. I go for entertainment and also a message in many of the raps. It's a quick way to leave a legacy as evidenced by my feedback last Friday. 

So where is this YouTube channel? There is a tab at the top of this blog that directs you there and it is below. My nephew has photographic credits and my niece and her husband are producing the videos. Go there now and subscribe so you can hear and see all  my raps for the 2013 season.

Carol

MC AC The Rap Lady

http://youtu.be/eDjy85D6nqY

Self-Discipline of a Caregiver

How many ways does a caregiver need to be self-disciplined?

• Live in the moment

• Listen
• Learn to say one concept at a time
• Select wise nutrition from what they will eat
• Put things back where they belong according to the Alzheimer's patient
• Be with them so they are not lonely
• Take care of own health
• Manage time well
• Carefully establish routines for loved one
• Make the house ready for later stages of Alzheimer's
• Keep up with their medicine
• Go to a support group (or have a blog)
• Arrange socialization with others
• Manage money and look to the future
• Pick out clothes to wear
• Arrange for shower or bath
• Arrange all doctor appointments
• Check for urinary tract infections
• Safety
• Simply explain the world to them
• Rejoice always

What is the job of the loved one with dementia?

• Trusting us and asking questions
• Cooperating with giving up privileges such as driving
• Accepting supervision
• Learning to have fun at whatever level possible
• Praying and worshipping
• Enjoying music
• Contributing to household tasks

Later stages can include changing adult diapers and arranging for hospice. Yes, it does sound like parenting. Roles are reversed and there may be some resentment about things changing.

In this Christmas season, I think of how God gave up His Son, Jesus Christ, so that by His grace I have access through faith to the greatest caregiver ever.   

Prayer for the Caregiver/Lovegiver

Book Review: Love, Loss, and Laughter

Why do I appreciate this book? Let me count the ways.

1. I read about this book on The Alzheimer's Reading Room here and knew I had to get it and I have not been disappointed. If Maria Shriver's book, What's Happening to Grandpa? reviewed here is great for kids, Dr. Cathy Greeblat's Love, Loss, and Laughter: Seeing Alzheimer's Differently is perfect for the carer and the family of the person with dementia.
2. The pictures do justice to those suffering with dementia illnesses and Alzheimer's and the captions that go with them show so much love and respect. Contrast this with the very AARP pictures that I wrote about here. Rather the book contends that "people with dementia don't disappear unless we disappear from them"(p. xiv). The pictures are from all over the world and do show wonderful carers and people being cared for. Richard Taylor (man with dementia) writes eloquently in this book.
3. The book contains not just Greenblatt's writing, but wonderful insightful quotes from everyone including Princess Yasmin Aga Khan to Bob DeMarco of The Alzheimer's Reading Room.
4. Specific ways in which carers can bring to life the people they care for are mentioned. Basically they highlight what the person used to like to do or what their career was. I have been worried about all the TV my husband watches, but then I realized that movies have always been his thing. He has a great collection of them and uses his mind to operate the controls needed to view. He has his favorites and while this used to bother me (Don't you get tired of the same movies? I would think), nonetheless it is who he is. It is his hobby that he enjoys.
5. The theme of the book seems to be:

   Enhancement of personhood and efforts to maintain quality of life should be our highest priorities. (p. ix)

   This is illustrated with all the pictures and captions/notes for the pictures that Cathy Greenblat included.
6. Should we ever need a nursing home placement, the book contains wisdom in selecting one including web sites to choose one in our area.
7. More than any other book I have read on the subject, this one highlights the need of our loved ones to feel useful. No, I am not being condescending when I ask my husband's opinion on something, or have him move boxes for me, but rather we both feel better about the situation. Currently I have carpal tunnel again and do need his help.
8. In the moment. Oh yes. Sally's husband and my husband do not always remember what happened earlier in the day. Sally and Jake took a week vacation and when they were home Jake had forgotten all about it. I mentioned this to DH and he said sympathetically (despite his own short-term memory) "Is Jake that bad?" Life then can be celebrated in the moment. This may be why I take so many pictures of my husband's moments. And it actually might not be a bad idea to live in the moment for all of us. We can't change the past and the future is in the LORD's hands.
9. The best practices include letting patients socialize. I see this in our life and also in the nursing homes described in the book.
10. I hadn't read this before, but have felt that my husband is indeed learning new things. "If we get past the stigma, we realize that it's always possible to build cognitive abilities, and that people have the ability to progress right until the end"(p. 71). The book specifies using Montessori principles as outlined by psychologist Cameron Camp. I had only been using one technique with my husband and now have more ideas for helping him learn.
11. Many times I read about bloggers who are angry with their loved ones who, yes, can be very difficult. Yet Michael Verde, President of the Memory Bridge in Chicago, is quoted:

    Either we learn how to love each other, or we keep disappearing to each other. (p.88)

    Indeed being a caregiver lets us appreciate life and each day; we don't have to grieve yet. They are still here.
12. Perhaps worth the price of this book ($24.95--but I got a used copy), is the chart on pp. 104-105. It tells the caregiver what to do and not to do for oppositon, aberrant behanvior, agitation, aggression, delirium, hallucinations, and so forth.

After finishing this book today, I reflected that I can only do this excellent lovegiving with the LORD's help. Others have all over the world as this book chronicles.  Today I heard on The Daily Audio Bible:

Thanks be to God who gives us the victory through our Lord Jesus Christ. Therefore . . . be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.

 (I Corinthians 15:57, 57)

15 Things Caregivers Can Do to Be Joyful

The Purpose Fairy has written "15 Things You Should Give Up To Be Happy" and the Huffington Post (calls itself the GPS for the Soul) has widely circulated it--click here.

Joy is the term I will use here instead of happiness.  I use kind, rather than nice. Joy and kind are in the Bible. But I will look at 15 main headings from the above post and make my comments or insert Pinterest graphics after them.

1. Give up your need to always be right. Do not argue with an Alzheimer’s patient. My husband found a Renuzit Aroma room deodorant in his workshop and he took it out, saying it didn’t belong there. It’s okay with him if it is in the main part of the house, but not his workshop. Oh well! I can joyfully go in there remembering that I don’t have to argue with him. There is a reason I put Renuzit there that doesn't make sense to him in his thinking and it just isn't that important.

2. Give up your need to control. But not always with this disease. I wrote a seminary counseling paper on the authority of an Alzheimer’s husband and concluded that, at times, I need to control to be the best helpmeet I can be with God’s help.

3. Give up on blame. I do not blame anyone for this disease and certainly not God.

4. Give up your self-defeating self-talk. Philippians 4:8 tells us to think on whatever things are true, noble, just, pure, lovely, of good report. . . . to think on these things.  

5. Give up your limiting beliefs. Philippians 4:13 says I can do all things through Christ who strengthens me.

6. Give up complaining.

Philippians 2:14 from the Jewish New Testament says Do all things without kvetching [Yedish for complaining].

  7. Give up the luxury of criticism. With the stress of the elections coming and the stress of daily living it is easy to criticize. I want to be a lovegiver instead—to give warm fuzzies, not cold pricklies (a ‘70’s term from Claude Steiner).

8. Give up your need to impress others. Impressing is pure pride as Scripture says: For all that is in the world--the lust of the flesh, the lust of the eyes, and the pride of life--is not of the Father but is of the world (1 John 2:16).

9. Give up your resistance to change.

I realized some time ago, that this journey of my husband's Mixed Dementia would mean a lot of change. I can hide my head in the sand, react to stress by emotional eating, or whatever, or I can research how I can be a good lovegiver/caregiver and give glory to God. This means lots of change that is coming down the pike. Change is growth.

10. Give up labels. I think that dementia issues do put limits on people, but they do not have to have labels. My loved one is not a disease, but a person. There are certain limitations he has, but disable does not mean unable.

 11. Give up on your fears.  My LORD knows how this will all end.

12. Give up your excuses.  This one is a hard one for me. I have to be more responsible now. Someone has to. I cannot say I am happy about my challenges, and would like to have excuses. And it is hard to ask for help as well.

13. Give up the past. This is so true. I live for each day and am thankful for what comes my way. Yesterday my husband mowed one half of the backyard, prompted by our neighbor mowing the front yard perhaps and my suggesting to him for several days it needed to be done.

14. Give up attachment. I love the lyrics by Michael Card in his song “Things We Leave Behind”:

Every heart needs to be set free
From possessions that hold it so tight
The freedom’s not found in the things that we own
But the power to do what is right
With Jesus our only possession
And giving becomes our delight
And we can’t imagine the freedom we find
For the things we leave behind.

15. Give up living your life to other people’s expectations.



I want to live so that one day the LORD will say well done, thou good and faithful servant and He won't expect me to be superwoman, just a woman abiding in Him.

Lovegiving Rather Than Caregiving


We all lose items from time to time.  Now when you don't have short-term memory you can't remember where you last used that item. I have left items places where I have taught and can trace that item and recover it at that school.

The latest item my husband has lost is his keys. Wednesday hubby was mad and wanted the keys right away. I said that I would get it after I worked Thursday which we did.

However Thursday morning he seemed uncharacteristically down. "I am losing it," he said. Several times he asked what day it was and several times I told him. We went after I worked to get him new keys. It cost over $70. We probably will find his other keys, but his sense of being in control is related to his having his keys and his maintaining a good frame of mind.

I love him and want him to be in good spirits. I am not merely a caregiver of my husband's possessions--his cell phone and his keys. I started thinking about those words caregiver and caregiving. Mark Shriver in the last post here is right. You are a lovegiver involved in lovegiving. If you were a caregiver only, you would say, "You have lost your keys twice now and I have decided that you don't need them." Sounds like a parent caregiver.

From Pinterest

If you are a lovegiver, you 

• listen
• speak one sentence at a time so what you are saying does not confuse the loved one with Alzheimer's
• spend money such as getting new keys. I also got my husband four new ties several days ago that have the zipper on them so they are easier for him to put on.
• answer without arguing. I read to never argue with an Alzheimer's loved one. He is right in his mind and his mind is often in a precarious position.
• share
• enjoy without complaint. DH has a great sense of humor and I do enjoy that about him.
• trust without wavering. It is important that he trusts me also.
• forgive without punishing. To punish would be to penny pinch and say no to a new set of keys.
• promise without forgetting. Someone in the house has to remember.  I have changed the terms at the top of this blog from caring and caregiver to loving and lovegiver.

Your lovegiving is for others as well. Without feeling sorry for yourself thinking I have enough on my plate because my loved one has Alzheimer's, you find opportunities to give to others and God gets the glory when you do this.

So instead of new responsibilities as a caregiver, I really give love. I have those new responsibilities as my husband's helpmeet, and I love him and can show it. This is a huge paradign shift if you think about it. Dolores and Karen also picked up on this notion with their comments on Shriver's book review below. Maybe we are on to something here, gals.

Book Review: The Best Friends--Part Two "The Knack"

Bob DeMarco from the Alzheimer's Reading Room writes:  "Television is a good baby sitting tool, 

it is not a good Alzheimer's caregiving tool.  In fact, too much TV will bring on the "dull"  faster than a speeding  bullet."  

I just never know how to involve my husband in "meaningful" activities.  "Wouldn't it be just great if he could do puzzles!" people suggest.  "Can you keep him busy?" you ask.  He watches old movies most of the time. This is what he wants to do. I am concerned, but yet trying to work to pay off bills for when I have to stay home to take care of him. He loves being retired and with our dog.

All I do know is that he is contented and I realize as a caregiver I must be doing somethings correctly--that I have a "knack". He loves it when I call him while I am away, but doesn not seem depressed at all.

It's like adopting a special needs child but not letting them know they are deficient but showering them with love. Perhaps there is no need to educate my husband on what is coming down the pike for him, that he should be doing puzzles. Ten years ago I knew very little about dementia and so did he. When he was diagnosed with dementia in December of 2008, he just said he felt fine. We do compensate for his short-term memory with a daily clipboard and regularly talking about what is happening for that day. He has changed, but is not able to do any more than what he is doing. Next week we are trying to incorporate exercise at the gym, however.

The Knack, according to the authors, is a whole set of caregiving behaviors.

Caregivers who successfully learn the Best Friends model of care will develop knack, or the ability to do something easily, and will learn many tricks along the way. Knack for families is all about resilience, about surviving the disease, about providing good care, and about enjoying moments with the person. It is about the quality of life, for the person and his or her loved ones. It is about working through the pain. One door is closing and another is opening. pp. 101-102

They say elements of knack include: being well-informed, having empathy, respecting the basic rights of the person, maintaining caregiving integrity, employing finesse, knowing it is easier to get forgiveness than to get permission, using common sense, communicating skillfully, maintaining optimism, setting realistic expectations, using humor, employing spontaneity, maintaining patience, developing flexibility, staying focused, being nonjudgmental, valuing the moment, maintaining self-confidence, using cueing tied to the life story, taking care of oneself, and planning ahead.

Take the area of communicating skillfully. This means one idea at a time. No pronouns to referred to something or someone in the previous sentence.

                                                               

Take valuing the moment. I have been working all week and have things to do today, Saturday. He doesn't want to come today, and is content to stay home. So we went to dinner last night. He loved it. At dinner he told me he loves me, loves the restaurant and loves his dinner which he slowly ate. I told him that I loved being with him. I didn't have a smart phone to play with, I don't text, I was there for him. I praised the LORD in my heart for this great date knowing what may come down the road with Alzheimer's. I valued the moment.

I think it comes down to having "the knack" as we are in Scripture and growing in the fruit of the spirit mentioned in Galatians 5:

love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control

Self-control is really needed in Alzheimer's care. We can't always control the anger or moods of our loved one, but with God's help we can grow in self-control. Speaking of self-control, I am soon off to my 7 am Weight Watcher's meeting and then on to a Toastmaster training event.

Book Review: The Best Friends Approach to Alzheimer's Care--Part One

“What a grand thing, to be loved! What a grander thing still, to love!” ― Victor Hugo

Here is a book with so much wisdom for the caregiver that it needs three posts in my opinion. Sally put me on to The Best Friends Approach to Alzheimer's Care by Virginia Bewll and David Troxel. Sally has started using these principles with Jake. Today's post will deal with emotions that AD patients have. I will apply it to DH for the most part. Two more posts will follow from this book.

Chapter one insightfully lists common emotions and feelings of persons with AD.

1. Loss. It took some time for my husband to decide to give up driving. I was glad that he decided, even though he had passed the Alzheimer's driving test for two years in a role. When the driving privilege was abuptly taken from Jake, he experienced a huge loss. Our husbands want meaningful roles. I still look to my husband as a protector of the family. He checks the doors are locked at home and likes to accompany me whenever he can. The other night the dog barked at the smoke detectors making noises. My husband took great pride in handling this noise, taking down the batteries and planning to replace them.
2. Isolation and loneliness. It means so much to our husbands to be together. Sally and I both substituted one day in the public schools and Jake came to our house and spent the day with my husband. Next week DH will go to Jake's house while Sally and I are out and about. Jake helped DH with the yard and my hubby will help Jake with painting a fence next week and Sally at Jake's home. I am also concentrating on being WITH my husband as I wrote earlier on this blog on 9/29/11.
3. Sadness. Both DH and Jake are not knowledgeable about Alzheimer's, so their sadness is not amplified by what is coming in the future. However, Sally and I are often sad about the situation.
4. Confusion. I get asked every morning at least four times where I am going. Sometimes I say, Check the clipboard, where I have printed the schedule for the day. My husband has started to get confused about what word to use, a further deterioration.
5. Worry, Axiety and Frustration. We have one large TV in the family room where DH watches movies for most of the day. He has a large collection of cassettes and DVDs and also finds interesting material on cable. This large TV has the only box (of our three TV sets) where we can arrange to tape programs in the future. Last night I wanted to see the program where Dr. Mary Newport was interviewed; DH was very frustrated when I didn't seem to get him back to the right channel. In fact, in his anger and frustration he decided to go to bed angry. He wouldn't take his pills. He wouldn't pray. He was livid that I messed up his TV viewing. This was not intentional on my part because I saw that he was on the news and returned to the news; by this time he thought I had lost some other program he dearly wanted to see. 
6. Fear and Paranoia. People with Alzheimer's disease often look for an explanation about what is happening to them. (p. 16) One time DH asked me if I were having an affair and of course I assured him that I wasn't and would not have one. He was lonely and this was before I started being WITH him intentionally. (Early on in the disease I started withdrawing emotionally from him, thinking that I would again become a widow as I had in the past.)
7. Embarrassment. The person with Alzheimer's disease is in a giant classroom every day, one in which he or she never has the exact answer. (p. 17) It is best to not ask them any questions. Asking their opinion might help at times, but they can't even decide what to eat on the menu in a restaurant.

The approach written about in this book lets us caregivers know that these feelings are normal. Our loving understanding can minimize these normal feelings of a person with dementia/AD. The best way I can love husband now is letting his steady personality change and understanding that these feelings are normal and being WITH him through better and worse.

WITH

I think it is so important to be WITH our Alzheimer's loved ones. They have a lonely journey if we are not there for them.  My husband wants to go WITH me on any and all errands.

I think of Sue who has stayed home WITH her hubby. He is now in the VA hospital and she can work part-time again. I saw her Wednesday and was able to hug her. We both know what we are going through when we hugged yesterday. That's the sort of hug that I give Sally when I see her. That's the sort of hug I want to give the other ladies who write/comment on this blog. I think I got the idea of HUG from Dolores.

For Pink Lady Dana who commented on the last post, I have a thought. SHADOWING. I don't know your situation there in California from here in Florida, but I would say go to the grocery store with Steve. I have read somewhere that Alzheimer's patients like to shadow their caregivers, like a puppy. Socialization helps them. We can either accept this, or we can get annoyed.  It doesn't matter if our husbands follow or if we go slowly and hold their hands. They are WITH us. Our lives have to slow down. We don't get the plan we think we need, but we get the fulfillment of being where the LORD wants us to be at this time. The Christian marriage is compared to Christ's love for His church, His bride. Christ desires to be WITH us, only we better be the puppy dog following Him, not the leader who demands He follow us.

Skye Jethani wrote a new book--With: Reimaging the Way You Relate to God.  I am thinking about his prepostions, OVER, UNDER, FROM, FOR and WITH:

• Life OVER God. People can live without regard to God, maybe angry that God has brought Alzheimer's or some other situation into their life. They may take matters into their own hands like taking a substitute love as Barry Petersen did in Jan's Story that I wrote about here in a July book review several months ago.
• Life UNDER God. This would be a life of duty WITHOUT the emphasis of fellowship. Legalism. These people bargain that their adherence to rules will mean that blessing must follow.
• Life FROM God. Christians in this category go after His blessings and consumerism taints their relationship with our Father.
• Life FOR God. People run around doing God's work and being nice. I wrote about that problem in Getting Off the Niceness Treadmill. But it isn't about what we can do for God that gives our life meaning, that pleases Him. Everything, even the mundane, is for His glory.
• Life WITH God. Fellowship with God. In Acts 4 the members of the council saw that Peter and John, ordinary men, had been WITH Jesus.  Jethani calls believers  to be WITH Jesus.

Back to the subject of this post. How are we WITH our Alzheimer's loved ones? I am WITH my husband when we pray together and how exciting it is that the soul in an Alzheimer's patient will be there beyond when the mind goes. When I go off to teach, I insist my hubby and dog Ziggy wave goodbye and blow kisses at the window--our tradition that says we love each other. I call him when I get somewhere to say I have safely arrived. I just sat with him at the end of  a romantic movie, even though I had seen it before. I am in this journey WITH him. I just made myself unavailable to substitute one day a week so I can be WITH my husband. One day I will not be able to leave him alone at all.

Lord, give me the fruit of the spirit in Galatians 5:22, 23

--especially gentleness and self-control--

so I can be WITH my Alzhezimer's loved one,

in sickness and in health until death do us part.

Caregivers

From John 19:25-27 in the New Living Translation:

Standing near the cross were Jesus’ mother and his mother’s sister, Mary (the wife of Clopas), and Mary Magdalene. When Jesus saw his mother standing there beside the disciple he loved, he said to her. “Dear woman, here is your son.” And he said to this disciple, “Here is your mother.” And from then on this disciple took her into his home.

This morning I read this from John. Jesus, on the cross, assigned the care of his mother to a beloved disciple. There you have it--caregiving in Scripture.  In my yearly journey through Scripture I may find more examples of caregiving.

Who has been assigned to us? My husband is assigned to me. One day I want to hear, "Carol, well-done, thou good and faithful servant." This means that without complaining, with thoughtful care and study, I have a charge from the LORD. It doesn't matter that there are kids and grandchildren. It doesn't matter that one day he may have to be put in the "home" if things are too hard for me at home. I am his caregiver for better for worse, until death us do part.

There is a dear lady in my acquaintance who took in a non-relative to care for her because she had no one else to be there for her and she faithfully was a caregiver until that woman passed away. Some years have gone by. Now that lady has beginning dementia. A family is there for her and I pray for her and her family.  She set the pace in this Christian family, didn't she!

Dear LORD,

Help us be the best caregivers we can be

for your glory.

Amen. 

Anger of the Alzheimer's Loved One

“Whatever I neglect now I shall have to pay for later.”
― Nelly Ptaschkina

 Bob DeMarco on the Alzheimer's Reading Room (see above link) wrote this today:

The proactive Alzheimer's caregivers decide to do. This changes the way their brain is wired. This change leads them away from the "lamenting of their own sad fate", away from "venting" and puts them on the path to the positive. The path of doing.

De Marco says that he has been interviewed and he is asked to talk about how horrible being a caregiver is, but he doesn't respond to how horrible being a caregiver is. When you read his interaction with his mother, Dotty, you see how he cares for her proactively.

We can do much proactively ourselves with the LORD's help to not have an angry loved one. Yet anger is inevitable for our Alzheimer's loved one. The brain's hippocampus, which controls social behavior, is losing neurons.  One man in my support group whose father had Alzheimer's reported that the family had to hide all the knives in the house. The 36-Hour Day, 4th Edition, says: "Try not to interpret anger in the same way as you would if it came from a well person." (p. 153) Jennifer Ghent-Fuller says that person with AD have both "an altered view of reality" and "behavior that can change depending on how we interact with them." See Ghent-Fuller's Internet Article. Excellent help in this article.

We need to do whatever it takes to make them feel emotionally secure so they don't become angry. We need to change--they can't. Show them respect. Let them in on their medical situations perhaps by saying I need to provide clues for you because you have short-term memory. Then do not harp on this fact. My husband came up with several solutions himself. He asked for a daily checklist for when I am gone. DONE. (Some days he doesn't remember to use it, however.) He asked for a small calendar like the one he used for 2009-2010. DONE. I went to Staples today and got the earlier one for all of 2011-2012 essentially for free because it was discounted to $5.99 and  I had $6.00 in reward points. (More on couponing later.) Then I wrote events in that calendar.

Scripture says, "A gentle answer deflects anger, but harsh words make tempers flare." Later in that same Proverbs 15 chapter we are admonished to think carefully before speaking. We have to give important information simply.  Keeping a journal of problem behavior and that journal can lead us to solutions. What led up to the anger? How did I respond--gently? If not, how did I make the anger escalate. The Alzheimer's Reading Room always has great clues for speaking gently and we can put our ideas out there for solutions and Bob and his readers generally reply.

We can affirm the emotions the Alzheimer's loved one  feels. You greatly miss driving. . . .  I see what you are saying. . . .  It may be okay if we give it time.  However, we have to say only one idea at a time. See if we can figure out their point of view.  Sometimes we can distract them with something they like such as ice cream. There may come a time when the neurologist or primary care physicial needs to prescribe anti-psychotics or anti-depressants for either the AD loved on or the caregiver herself!

Back to the quote at the top of this post. We can be proactive. Judy Berry on The ALZHEIMERS READING ROOM writes

 The ONLY Way to Deal with Challenging Behavior

 in Persons with Dementia IS

"To PREVENT IT in the First Place"

Blessed

Psalm 17:6,7 I am praying to you because I know you will answer O God. Bend down and listen as I pray. Show me your unfailing love in wonderful ways.  

Proverbs 3:33 The LORD curses the house of the wicked, but he blesses the home of the upright. The Living Translation 

Her.meneutics on Alzheimer's

The above link describes the care of this Christian home, called The Beatitudes, in Phoenix, Arizona. The patients are given their way on many things.

As a result of these and other caregiving strategies, patients at The Beatitudes demonstrate virtually none of the “agitated, delusional behavior common with Alzheimer’s.” The staff recognizes patients as individuals with bodies, minds, and spirits who need affirmation, emotional support, and relationships.

It does make a difference when Alzheimer's patients are treated with respect and Christian charity! The caregivers also learn to practice the fruit of the spirit found in Galatians 5 including PATIENCE.

The New York Times even highlighted this Arizona facility.

I am learning to spoil my husband on his preferences unless they are harmful to him or we can't afford something. Then I have to be so careful to explain. Usually we have peace in the home. So far.

Last night he said to me, "What would you like to do?" I was thrilled.

"Go to the Mall," I said. We did and had dinner at Ruby Tuesdays and I even spend a little bit of money on sale items--haven't done that in ages.

At the Mall he saw a gentleman he used to work with. He woke up this morning and mentioned him! Maybe that RNA tablet is working! He didn't have short-term memory!

Thank you, Lord!

Adustments

I am self-conscious in my own home now. I realize that when I don't follow these procedures, Sweetheart gets confused or frustrated. Then I get tense. As I wrote earlier on this blog, I am in training as a caregiver.

From experience with my Sweetheart's demenia I have learned to write things down. Pictured is the visor on his car. It is a small white board. I can write on this. He also is very dependent on the calendar and crosses out the days.

A nurse who works with Alzheimer's patients also told me:

• Give him one idea at a time.



• Use short sentences.



• Continue routines.



• Learn habits now such as GPS for the car. Maybe I should buy this birthday gift for him early so he can practice using it to get home.

The nurse said that patients light up when the loved one who sees them often comes to visit.

Simplicity and Complexity

• Today my husband is finishing up a week's prescription of Famciclovir 500 MG for his Shingles. Even with supplemental prescription insurance the cost for 21 pills was about $183.
  
• Vitamin B complex I heard helps Shingles and so I give him extra of that. He also takes Extra Strength Tylenol for his pain.


• In this short time Shingles have taken a lot out of his energy and spirit. He has had a heart attack, heart surgery, carotid artery surgery, and survived second degree burns on his lower legs--all with a good attitude and good humor. But, I must say that Shingles have thrown him for a loop. He is grumpy. I have heard that Shingles can last anywhere from a month to six months.


• His cold in January and Shingles in February may be due to stress. I have come to see that dementia is stressful for him. (I had thought that it just was me his caregiver that had stress.) The stress causes him to simplify his life and want me with him. When I am later coming home than he expected, he gets anxious. Yesterday I was talking with someone and came home a half an hour later and this bothered him, even though I called him to say why I was delayed.


• The simplicity of his life is in contrast to the complexity of my life with part-time jobs and many hobbies and projects. Does my life cause him more stress than joy? It is confusing for me to talk about my life to him--he doesn't follow all of what I am saying. I miss being able to tell him everything.