The Soul Beyond the Senses

Senses Are Changing

This is hard to write because I am grieving as I see these things happen and so are others in his family I'm sure.

Cognitive Decline. Hubby and I still talk--but mainly about daily things like does he want yogurt, Boost, ice cream or water. I point out how cute our dog is, but he doesn't respond. Last Saturday, the day before Father's Day, he didn't recognize his own adult son and daughter, his only children from his first marriage. I am sure this is hard for them. They did not allow the grandchildren to see him, favoring letting their memories of the grandfather be of happier times.

Touch. Hubby used to object to our dog licking his head and toes. However, now he doesn't object. He doesn't like the feel of my hair when I bend down to kiss him, so I try to control that hair. At times he favors the fetal position in bed, but this may be because both knees have osteoarthritis it seems and we put a pillow between them. Last several days,  however, he is on his back with his knees bent and he rubs those knees.

Sight and memory. He doesn't respond to how he looks (buck-teeth look) with upper false teeth not completely in his mouth when I show him in a mirror. At times over the past few months he hasn't recognized sights in our home. He forgot about the backyard. I have to remind him that THIS is our house. I do that often. I also tell him that someone will be with him at all times now. I can't leave without someone being here. Usually they sit on the couch in the family room and look down the hall to see him in the hospital bed. No longer am I amazed that volunteers have come forward to stay with him when I need to leave the house. This morning a fifteen year old and a 17 year old stayed with him. The younger one touched his hand and my husband smiled warmly--a definite bond. Care receivers often live in an earlier time and I wonder if he thought Esteban is his son at a younger age. 

Taste and Smell. Hubby can chew a pill but not a capsule pill so he is not getting capsule pills now. Except for sweets his taste buds are gone. At one point I was crushing all his pills and putting them in applesauce. But it would take a long time to feed him and he needs his pain medicine at special times. His nurse has him on fewer pills now. He used to take Metformin for Type Two diabetes, but doesn't need it now and I do check his glucose. Fewer pills means fewer side effects. The Namenda and Exellon Patch for Alzheimer's wasn't working any more anyway. The Hospice nurse knows the protocol for pills. I am grieving about fewer pills, but this simplified medicine seems to be working and it is the dementia that is causing his downhill spiral.  I haven't done much with smell to bring up memories, but that is a caregiver strategy to use. On the other hand he does not smell his own excrement--but I sure do!

Hearing. Still good I believe, although he isn't interested in TV as he used to be. He does respond to my voice and if something is to be done (turn him in bed), you have to tell him that or he will get upset by shaking his hands. Tell him what is to happen, repeat it and do it. Then he is not upset.

So how do I communicate with my husband? 

Smiles and simple words. Elaine Pereira, author of I Will Never Forget writes HERE: "As the brain of an Alzheimer's person deteriorates neurologically, language plummets as mumbling trumps intelligent words." He doesn't answer questions now. I am learning to interpret hubby's mumbling.  If he doesn't want some food I am hand-feeding him, he will just push it away. On occasion he will give me an angry look or push my arm to get it away. I then back off. Mainly I smile and tell myself that if the situation were reversed (I had dementia), he would do the same for me.

Feelings. My husband will start to cry and I pick up on that as I say: You feel sad. It will be okay. This calms him down. Or I pray. Before the dementia, I never saw him cry. He definitely has emotions and often he smiles. He likes when I say I am his loving wife, and once he said "thanks" when I said this. I show him my wedding rings and his which, I noticed, is now on his middle finger since he has lost weight not eating much. I appreciate that a Hospice aide must have put it on the other finger.

Music. Sunday morning I put on hymns and he seemed to enjoy this so much. We could worship together. I mentioned Revelation 5:9 to him that in Heaven we get to sing a new songs to the LORD and he nodded. If the senses and memory are changing, his soul isn't. This Christian believer is with me when I pray. He listens to heaven talk. My faith helps me not cry, but to look to heaven where there will be no more tears.

I appreciate his soul and that he 

will be in heaven one day.  

It's great that with the decline of 

the senses his soul will remain. 

I look around the house now and am grieving for all of the changes. He is confined to our bedroom and content at that. Equipment has come to a halt. No more walker, wheel chair, Geri chair, and bathroom grab rails. Just a hospital bed with my twin bed beside him. We don't eat meals together any more as I spoon feed him and give him liquids with a straw.


When the Hospice Health Care Aide came Sunday morning, this Christian lady told me our house has peace. What a compliment to our LORD to say that the house has peace! The LORD is in this place.

The LORD is my peace. Psalm 119:165 reads:

Great peace have those who love Your law,

 And nothing causes them to stumble. 

I think of the words in the old hymn, It Is Well With My Soul by Horatio G. Spafford: 

When peace like a river

attends my way,

When sorrows like sea billows roll;

Whatever my lot

You have taught me to say

It is well, it is well, with my soul.  .  .  . 

Discombobulated With Caregiver Stress

Maybe I was a scatterbrain before becoming a caregiver. An Alzheimer's counselor even told me   blogging helps my stress. Here is my confession about my weaknesses and my often befuddled state. LORD HELP ME!

When you are a caregiver, you have stress. Could that explain why I cut my finger with Chef's Magic, went through the garage ceiling and accidentally swallowed my husband's pills and ended up in the hospital--all reported for the world to see on this blog!! Then there was the lost wallet on Good Friday in April--never found it to this day.

And clutter? Apparently you have to keep at this clutter problem. The thing is we have a great den with a pool table. Things get put on that pool table.  Put your supplies where your work is, according to organizational experts such as Mindy whose book I reviewed here. So cloth scrap material is by the sewing machine in that den. Now I am trying to sew a gift to be thoughtful and to save money and I need that pool table with its paper clutter cleaned off so I can cut out the gift. Shame on me! Too much clutter! Well I can't substitute teach this summer, so the opportunity to clean it off is here.  

Stress Indicators Recently?         

My digital camera went missing.  I didn't panic because I can take pictures with the iPhone. What is important is my husband. My digital camera was found in a box in the car.

My iPod went missing. I like my old iPod because I can get a phone call on my iPhone and turn it off and take the phone call or have them both on at the same time. I didn't panic about the iPod loss because I can listen to my podcasts, especially my Daily Audio Bible, on the iTunes on the computer. What is important is my husband and my being there for him. Sure enough that iPod showed up. It was right by the den's copy machine--camouflaged dark on the dark surface.

My keys to the DUI office went missing last Saturday. After several calls during the DUI break to get someone to the rescue, they were in the bottom of my purse! Does everyone just think I am flakey or what! Could it be that--

You work on organization all your life?! 

Today I have my husband at home and that is what is important. I am very pleased about what IS important. I am there for my husband who trusts me--a relationship we have built over our 14 years of marriage. The heart of her husband safely trust her it says Proverbs 31. Rather than my asking him,  he tells me if he is wet and I can change his adult diaper now in the bed--I am a skilled albeit stressed and befuddled caregiver. 

Chalk my scatterbrain up to caregiver stress or a character flaw, perhaps.  One day I want to get organized, but that day is yet to come.

Carol

Quotes to Sustain the Family Caregiver

Home or Nursing Home?

John Hopkins researchers Lyketsos and Althouse conclude:  “We’ve shown that the benefits of having a close caregiver, especially a spouse, may be substantial. The difference in cognitive and functional decline over time between close and not-as-close pairs can mean the difference between staying at home or going to a nursing facility.” See reference HERE. 

I consider these days precious as I am here for my husband at our home, aided by Hospice.  In an insightful book written to Christians, When People Are Big and God is Small, Edward Welch writes,  Our goal is to love people more than need them. (p.179) To love my husband is to be the best helpmeet for him despite the fact that I know where this dementia is  going. Yes it is hard, but the LORD is right here.  I am learning to leave other distractions behind--to let them go. 

One godly woman, N. H. L., shared this on Facebook: 

"Father, if You are willing, 

please take this cup of suffering away from Me. Yet I want Your will to be done, not Mine!" Luke 22:42 

True love to God . . .produces sweet submission to His will, does not rebel at His difficult dispensations, does not resist the appointments of His wise and holy providence, will not permit us to call into question any part of His government,will not indulge a doubt respecting the rectitude of His proceedings. 

True love to God says, "This trial, this affliction, this bereavement, this piercing cross--has been arranged by my Father in Heaven! He is infinitely wise, and infinitely good--He does all things well--I submit." 

Like Job, it says, "Naked I came from my mother's womb, and naked I will depart. The LORD gave--and the LORD has taken away; may the name of the LORD be praised." Job 1:21  

(William Nicholson, "Love to God, and the Divine Approbation" 1862)

Find the Humor

www.keepcalm-o-matic.co.uk

Lots of stress this past week including health concerns for Kenny's mother who is scheduled for surgery tomorrow--stay tuned. With Kenny at the hospital for the past few days and for three weeks after the surgery when he goes out of town to help another relative of his, it is my turn to shave and shower my husband. HUBBY THINKS OF ME AS THE NAG IN THESE CIRCUMSTANCES.

I actually cried in front of my husband tonight about what kind of underwear he is supposed to wear now and whether or not he takes a shower. I have to keep reminding him to use the walker--doctor said so, I tell him. I asked him to pray for me which he did because I was so upset; somehow he found enough words to make a thoughtful prayer. He soften and promised to take that shower in the morning.

We had a plumber out on Wednesday, but for two nights water spilled out in the backyard. They came back, with an explanation,  but it is still not ideal. I don't do plumbing and car repair, nor can I explain them. I miss the days when my hubby could handle these issues.

Last night of all things I misplaced my wallet. I noticed it last night and retraced my steps today. I went to the bank this morning to see about a new debit card. I got cash out so I could buy gas. I need to replace a lot of items including the driver's license and credit cards.

But, what the heck, let me laugh a little at the two Alzheimer's husbands and at myself. .

Thursday night. Hubby is so slow at eating now that it doesn't pay to eat out if we are on a time crunch. But for our 14th anniversary two nights ago (when I had my wallet and when we did have time), we did eat out at Carrabbas in Plant City. I used my iPhone to post our picture on Facebook and my goodness we got so many likes and comments! Hubby was still working on his dinner of course when I was finished eating.

I have to laugh at myself. I didn't want to have an anniversary where we didn't talk, but I just got bored. He often doesn't understand what I say.  So out came Words With Friends games on my iPhone. Our waiter helped me with a game. Then it came up that I have a YouTube channel and often people in Plant City recognize me as MC AC The Rap Lady. In this nice restaurant our waiter got  other staff together to hear several of my raps. Hubby just enjoyed me rapping for these folks. Really we both had a great time.

Good Friday. Since we met Sally and Jake over three years ago, we have been going to Good Friday services at their church. Friday night was no exception. Sally told me 7 pm and we were late because of those bathroom issues of hubby. When we got to their church, the sign said 6:30 PM for Good Friday services so WE WERE REALLY LATE.  We snuck in and sat in back of Jake. Sally was in the choir. I watched Jake try to navigate the bulletin in this liturgical church and helped him at times. He started singing the choir's song. After the service Sally asked me if we could take Jake to Denny's while she and their granddaughter had a choir practice for Easter. The three of us headed to Denny's and I tried to find the funny with the conversation of our two Alzheimer's husbands, DH and  Jake.

Not to make fun of the husbands, but to document the stage they are in I was keeping track of the conversation. About ten times Jake wanted to talk about whether his wife would be joining us.

Jake: Where's my wife now?

Me:  She is at choir practice for Easter. She and your granddaughter will be joining us.

Finally (so I wouldn't be tempted to play Words With Friends on my iPhone as I did on our anniversary the previous night), I switched the subject and said that yesterday was our 14th anniversary. Jake then found a new topic--how long he and Sally had been married. He got his wallet out and started looking. The conversation went on and on--same comments.

DH: Your wife will know how many years it is, Jake.

Jake (repeatedly): But I should know. I am embarrassed that I do not know.

I finally told Jake that one doesn't keep the wedding certificate in his wallet. Now I happened to know that Sally and Jake had their 40th anniversary last summer. He continued to be so upset that he didn't know this. I wrote on a slip of paper for Jake: I was married in 1973 which means I have been married for 40 years. He put it in his wallet to take the place of that marriage license that he thought should be there.

Sally and their granddaughter came. He asked her about how long they had been married and said he was upset he didn't know.

Sally: Sometimes you forget things.

Both husbands needed their wives to them them how old they are. Sally whispered in Jake's ear.

Jake: I'm 76.

Me: Do you know how old you are, Sweetheart?

I also whispered in my husband's ear.

DH: I'm 76.

The granddaughter laughed.

Sally offered to pay for my coffee and my husband's milkshake. So I didn't realize that wallet was missing last night. I have indeed been humbled losing something.

I had been keeping hubby's debit card in that missing wallet along with mine. Today, Saturday morning, we went to the bank to get new debit cards. Hubby told the bank officer earlier today that I was always losing things.

Me: Name another time.

DH: There have been thousands of them.

Then we went to visit the hospital where Kenny and his mother were awaiting her surgery.

From Deal Dash posted on Facebook

Movies With Memory Loss Issues

This is a repost of one I took off.  I have added one recent movie. 

"God's Not Dead". I was glad we could have a date that we both enjoyed so much recently. My husband was moved by the movie and didn't seem to flinch with the mother who has memory problems--in fact he didn't remember that part of the movie later. It is certainly more biblical than the current "Noah" which doesn't even mention God (we didn't see that one and do not plan to). The next day my husband didn't remember this movie at all.  

"The Notebook" is a beautify movie and book by Nicholas Sparks. We have seen that movie on TV. I may read the book, both well reviewed. Sparks writes in chapter one The romantics would call this a love story, the cynics would call it a tragedy. In my mind it's a little bit of both. Yep.

ADDED on APRIL 22, 2014.  SEE REVIEW IN COMMENT BELOW. 

"50 First Dates" my husband has seen several times I know and he remembers that movie but has said he doesn't remember how it ends. Four years ago he watched it on Easter with his son who was visiting Plant City. I wonder if they discussed it--I was at Books-a-Million with other family members at the time getting a book so the teenage granddaughter had something to read on her trip home to Virginia. We also own this movie and have enjoyed seeing it several times. There is  scene in the art class when the character played my Drew works; several men have 10 second memory and this is comedy in the film. However, the movie is very sweet.

"The Vow".  I wrote on Facebook: We saw "The Vow" today and it touched my husband. I told him if he forgot me I would court him as Kim courted Krickett. He said he wouldn't forget that he is married to me. He also compaired it to the movie "50 First Dates". I understand that the book is also a best seller now, and tells more of the Christian faith of Kim and Krickitt Carpenter. The world needs to understand that a wedding vow is a wedding vow. I am going to see if I can get this book for my Nook. The movie leaves so much out and makes it so Hollywood. However, that movie did bump up sales for the book.

"A 1000 Words" stars Eddie Murphy as Jack McCall and we saw this recently when we couldn't get into "Hunger Games" which of course was sold out that first weekend. Later we saw Hunger Games and I loved it. My husband liked neither movie.  "A 1000 Words" has gotten poor reviews and what disturbs me the most is how Jack McCall's mother who has dementia is portrayed. I have no sense that she is being properly cared for and her confusion that her son Jack is her husband is meant for comedy. Memory issues are not funny, folks.

"Away from Her" is about Grant and Fiona Anderson. Fiona is admitten to a facility and Grant cannot visit her for 30 days. When he does see Fiona after those 30 days, she has forgotten him. I haven't seen this movie yet, but learned about it at an Alzheimer's workshop several years ago. I ordered it, but have not seen it yet. 

"Forget Me Never" my husband and I saw on TV, enjoyed it, and I blogged about it earlier on Plant City Lady and Friends. We saw this movie, however, before he ever acknowledged his memory problems.

Tom Rush has a video song that makes fun of memory. Loss of memory, however, is not funny at all when you have it or your family member has that memory loss. My husband often relies on me for memory. I tell him I am happy to be his memory, but that memory is so painfully less now than two years ago when I first posted this list of movies.

More Baths and Less Talk

Disclaimer: This is not a book review about a very funny book where UK author Nick Hornby rattles on and on about the books he buys each month, but then reviews the books he actually reads each month.  

However, the title of the book has everything to do with the topic of this post.

At the end of August our lives were thrown upside down when my husband couldn't walk. You add a disability to Alzheimer's and life indeed is complicated and my stress and ability to cope with life is hammered. When I showed neighbor/caregiver Kenny the title of this book, we both laughed. Kenny has been helping me with my husband's showers and today's shave and shower was the most successful to date. Hubby needs more baths and I need less talk. It's all about the wife nag factor. I know he needs more baths and cranberry juice to avoid another UTI, but I need to shut my mouth about this fact. 

This morning Kenny skillfully suggested that hubby sit on the toilet while he gave him a razor shave. The idea was that hubby is already in the room where he showers. 

Now I was outside enjoying Pharis and his daughter Dezarae landscaping in Area 8 of my project, The House That Cleans Itself. When I left you HERE last May, one of the plants in the front yard was dying. Those were removed and new croton plants have come to our front door, mainly purchased from a country neighbor about two miles away. Stephanie sells wonderful plants cheaply and gives more help than Home Depot. 

Huge Landscaping Improvements Being Undertaken

Pharis has many plans to save this the yard and improve the house, including the roof. How blessed are we!

Meanwhile I popped back inside and Kenny had gotten hubby in the shower without me! 

I said something when I saw this and my husband snapped back. I should have left them alone--not said anything like the book title suggests:

MORE BATHS AND LESS TALKING

In the midst of many hard days, today is so encouraging. Thank you, LORD, for people coming alongside this journey. 

Pride Goes Before Destruction



MRI discovers torn cartilage



Light pink curb I thought was part of walkway

Pride goes before destruction, we read in Proverbs 16:18. Well I had a lot of pride and I fell over a long raised curb that separated our car from a brick walkway. At dusk it appeared to me that the curb was part of the walkway.

I commented in the last post about hubby being sad Saturday night as I left the hospital. He asked if it was his permanent home and of course I explained that he was in the hospital because of his knee. 

All Sunday I was back to the hospital with him. A person with Alzheimer’s doesn’t understand the hospital. He asked where our dog is. I should have put more lights on in the hospital room to avoid sundowners, but I forgot. I was tired and tried to sleep in the nice fold-down chair provided for guests. I tell you, that the staff there was wonderful—Cindy, Roy, Lou Ann, Lorrie and Tracey and I should have told have told them about sundowners as I did about his coconut oil that they kept in a refrigerator.

We left the dimly-lit hospital room as hubby’s bed was wheeled a brightly-lit room where the MRI specialist Carletta gave clear instructions to my husband as he entered her MRI machine that was to discover what was wrong with that right knee that had been giving him problems. Carletta’s sparkling personality was so much fun. She put music on my husband’s head set to mask the noise of the machine and he behaved himself all during the test that was maybe half an hour. 

Back in the dimly-lit room hubby had a sundowner’s episode, but I listened carefully and oh was I starting to be humbled. DH was uncharacteristically hurling all kinds of innuendos at me, threatening our marriage. I did start to listen, however, because I am being trained as a counselor. What is the feeling behind what he is saying even if the reality is skewed by an Alzheimer’s sundown episode?

Pride lesson number one. Hubby doesn’t feel connected to me. What he said was like a knife in my heart. I go around the house taking care of more than my share of work in household tasks, dare I say 99% of what needs to be done. But, my primary task and joy is to be WITH him. I have even blogged about this privilege of being with him as his wife. He told me point blank that I was becoming too bossy and that we needed to decide things together. I agreed with him. Everything I think is important to get done has become my altar above being a wife. I could understand how he was feeling and did not dismiss this, nor his anger.

So before going home for the night I gave him his cell phone so he could feel in charge. Meanwhile he called out Pastor who asked him where he was. He could not say where he was and Pastor had him give the phone to someone nearby. I was told that a nurse did talk with our Pastor.  Meanwhile when I got home, hubby called and ordered me back to the hospital, with strong statements that seemed to reflect on the security of our marriage. I was taken aback, but decided to take my weary bones back to the hospital. I even stopped and bought him ice cream.

It was as I got out of our car in the parking lot at dusk Sunday night that I fell. Pride goes before destruction, and a haughty spirit before a fall.  Down on my left side. I had learned to not brace myself in a fall and didn’t hit my head. But I was mad and in pain. Again with my pride I thought this fall was so unfair. Why had my husband insisted I return to the hospital after hours--so unreasonable, I thought!

I tried to hold back the tears from the pain as I made it to Third North with his ice cream. He was so glad to see me and had none of the anger of the previous hours. The husband in him rose to the occasion. Here he was needed to comfort me. Of course he expected that I was going to get his clothes and drive us home but I said I needed to go to ER about my injuries as Nurse Cindy started to fill out an accident report. I was sent to that same Emergency Room where hubby had been the day before. My pain had subsided by the time I got to ER and I decided to not pursue being examined in ER—possibly a prideful decision. Fortunately (better GOD’s grace than MY wisdom) I was just bruised as far as I can tell. My knee and elbow have abrasions and at this point the shoulder pain is gone. My pharmacist at Super Discount Pharmacy said to keep the abrasions’ uncovered and use Neosporin Ointment.

About 5:30 Monday night hubby came home and was wheeled in the front door by neighbor Kenny. Hubby headed for his spot in the family room by his DVD collection. We wheeled that collection out of the way so that the walker could be used. Soon Tom from Westcoast Brace and Limb was at our door to fit hubby with the brace he has been wearing on his injured knee. New items in our life: a wheel chair, walker (we have two now) and a knee brace.

Tuesday Jake came over and Sally and I attended a wonderful session with Dr. Aryn Harrison at our monthly Alzheimer’s Association meeting while Kenny stayed with the Alzheimer’s husbands.

So much help. Tuesday my main computer had a MAJOR virus and Dave from church is now working on it. I am so blessed to have all of this help. Sally and Jake’s son installed the moveable shower head for hubby to use as he sits in the shower.  The Interim Health Care have been at the house to rehabilitate my husband—three people today. Nurse Tammy, Occupational Therapist Sam and Physical Therapist Tarissa. Saturday Wayne again will mow our lawn. Thursday they are sending a social worker.  He has many adjustments so he can remain in our home and strengthen his leg, but he is on his way.

I have been remembering the lesson. BE WITH HUBBY. Fortunately there will be other people to help him exercise and take a shower sitting down. I won’t have to appear like the boss to him and we can just be buddies for however long the LORD wills.

--Carol from her Notebook computer by her husband’s side

(Corrected after first posted with pictures added when home computer was restored.)

Another Year Older

Ernie Ford used to sing a song called "16 Tons""

Another year older but deeper in debt. . .

Saint Peter don't you call me. . .

Yesterday was my  birthday. I am another year older.

Another year older but not deeper in debt. Last year we changed our mortgage to every two weeks and shortened the length of the loan. At this time next year I hope we will be less in debt.

My birthday gift from hubby is a walking treadmill. His personal shopper got it for less money at Play It Again Sports.

Not everyone does this on her birthday. Get Botox? No. Yesterday morning I had my consultation on my eyebrows and next Monday the deed (tattooing my eyebrows) will happen. For three weeks after that I will not be allowed to sweat while the forehead heals. So after Monday I cannot sweat on that treadmill and work in the yard. How can I not sweat when I have a middle-of-July yard sale coming!!! There are sweat headbands, however, and I do have those and know where they are.

Yesterday we also went to dinner with Sally and Jake at Grillsmith in Brandon. Eliza, the manager, took a picture of hubby  that I am posting on the Plant City Lady and Friends LIKE page on Facebook. We loved our service and the food there. Sally and I both had a delicious salmon salad and my husband had "Pork Chop Marsala", recommended by our waiter. I embarrassed my husband when I did two raps for Eliza. He put his red napkin over his face.

We caregiver wives stick together. Earlier this month Sally had pointed out the card section at Family Christian Bookstore and hubby bought me a DaySpring card I received yesterday with Proverbs 11:10. Now this card was in a small bag that I didn't peak at, but I knew where it was. I put the bag out yesterday morning. Hubby signed it. It said,

For My Wife

Your birthday is a time to reflect

on the amazing woman God

made you to be.

Your caring heart, ready smile,

and love for those around you

make sharing life with you

a blessing.

With each year, I discover

a little more of who you are

and who you're becoming,

and that's a lifelong adventure

I'm thankful for.

I love you,

Sweetheart,

and thank the Lord for the

precious gift you are in my life.

Sigh! Life is such a precious gift. I love my husband even more than when I married him in 2000. We didn't know what these senior years would bring (his dementia, our car crash, my biopsy next month), but each and every day I see the LORD's sustaining hand.

Book Review: Caresharing

Marty Richards dedicates this book to her Aunt Toni, who died at 102 1/2 as I [Richards] was writing this book. She indeed has been, and continues to be, my teacher and "the wind beneath my wings." This book came highly recommended to me by a social media friend who is in the field of caring for seniors.

Richards encourages us to share the caregiving journey with others and considers it a spiritual journey where whatever your faith you ponder questions about life's meaning and purpose (p. xiii).

As in another book I reviewed on this blog she uses the term "carer", but she adds "care receiver" and "care partner" to the mix. She says this journey is a dance where there are three moves:

1. Offer help
2. Ask for help
3. Receive help

She explores many emotions and growth areas that I ponder in my Christian faith: sadness, anger, guilt, fear,  failure of others, failure of self, forgiveness (a whole chapter on this one), coping, grief, and hope. She explores family expectations and roles and writes: all generations are affected when someone in the family needs care (p. 69).  She is reaching across different faiths, and so does not use Scripture as I would have done (and will do on my seminary counseling dissertation). It's as if all the issues I have addressed on this blog or may need to address are in her book.

Richards helps me want to know my husband more and not just the disease that has him. I woke up this morning and interacted with him before we even got out of bed; finally he said to turn over--he wanted a few more winks of sleep! I want all the interaction I can have with him at this stage and it is important. I am not working outside the home today and I am a lovegiver today, not just a home economist. I want to validate his feelings and learn his stories. Relating to him is just as important as all my other "to dos", some of which others can do for us. And, recently I have seen what others can do with our neighbor Kenny and Wayne who stepped up to the plate to mow our large lawns; also I now enjoy texting support from others in my church--they pray for us and I pray for them. They are caresharing.

Build on what your care partner can still do, advises Richards. Affirm their value. Ask yourself what is going on with difficult behaviors. Connect soul to soul. Even though I feel so busy much of the time, I read Scripture with my husband most mornings now, as a result of this book. I have had a habit in recent years of going through the whole Bible every year, but didn't think hubby would be able to comprehend this discipline. Instead we read from the Psalms and Proverbs and he often prays. Kenny prayed yesterday before I left to substitute teach.

On page 207 she has a hope inventory for areas of your life--the world around us, our work life, our home life, our relationships, our physical health and our sense of self-expression. She asks us to check off if we feel hopeful or hopeless in each category. WHERE DO WE NEED A NEW PERSPECTIVE on HOPE? Write an ethical will in the Orthodox Jewish tradition is one suggestion. Write a spiritual autobiography (I did that with Getting Off the Niceness Treadmill). She offers other strategies for our senior years as well.

You can get Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability, new or used, on Amazon HERE. It is well worth reading and very economic when purchased used. My used book was withdrawn from the New York Public Library and I wonder why this hardly used book was withdrawn, but am grateful for this book and its insights. I will read this book again in my journey with my husband's dementia, and practice the dance she encourages.

My Amazon review was just published HERE.

Our Thirteenth Anniversary Today

Menu Cover

Our anniversary didn't go the way I expected it to go today. Not at all. It wasn't that we don't love each other very much; it's just the effect of the disease.

A year ago I wrote about our twelfth anniversary here. Two years ago we were camping here and hubby and I wrote each other cards. I saw on that blog post that he wrote on mine:

Do other place I'd like to be than here.
No other person I'd rather be with than you.

I have to find those cards. Think they are part of stuff to still go through in the guest bedroom. What if that is the last romantic thing he writes to me before Alzheimer's takes him further down the road?

This morning started with my giving hubby three main pills: Metforman for Diabetes, Antibiotic for UTI and Imodium for Antibiotic. Later I would give him the rest, skipping pills such as the fish oil tablet which really makes him complain.

"Pill pusher," he said.

"No I am a lovegiver," I said. "I love you and always want the best for you."

Lovegiver is a word I started using almost a year ago when I read and reviewed Mark Shriver's book on his famous father. He used it and I think it is the best way to describe caregiving of your loved one. I must admit that I have been frustrated with the UTI and the disease of Alzheimer's in the last week. I canceled sub jobs to try to get a handle on helping hubby. Our "normal" is again changing.

"So you want to take your shower first or shall I?"

"You go ahead first," he said and he went back to bed. This grand gesture to let me shower first isn't necessarily the gentleman in hubby, but might be the disease. I have read about the lack of motivation with these patients. I was determined to not punish or be the sergeant today. It is our anniversary after all.

Georgene my blogging friend at Living on Less Money put a quote from Joni and Ken: An Untold Love Story on Facebook on Sunday.

We all dream dreams and know very well that they don’t always work out. Life is particularly hard on high expectations. Things hardly ever fall together the way we would have scripted them. The fact is, if we put our hope in a certain set of circumstances working out in a certain way at certain times, we’re bound to be disappointed because nothing in this life is certain.

So what’s the solution? To give up on dreams?

No, it is to realize that if we belong to God, there are even bigger dreams for our lives than our own. But in order to walk in those bigger dreams, we may face greater obstacles than we ever imagined and find ourselves compelled to rely on a much more powerful and magnificent God than we ever knew before.

I want my script to be that hubby will stay in one stage of the disease. We may be back to fairly normal after the UTI. This is my script for our 13th Anniversary.

Denny's waitress put
this in my carry out.

We were scripted to go to local restaurant Buddy Freddie's with our friends I blog often about--Sally and Jake. This script didn't work. We didn't go out. We brought in. Instead Sally and Jake came by because hubby was slow moving. Jake stayed with hubby and Sally suggested we go to Denny's and get breakfast for the four of us and bring it back to our home. Our wonderful waitress Chasity heard that she was providing an anniversary meal for one couple to share with another couple and she told me a wonderful story of a man who would come into a restaurant where she used to work with his wife who had Alzheimer's; they would clear the ladies room and he would go in with her so she wouldn't get confused. My husband is in no way that bad off as that wife--take note. He is very sharp. He compensates very well. But we know that dementia is different for everyone.

We brought the Denny's breakfast for the four of us back to our home and we ate at our dining room table about 11:00--all but hubby who refused his bacon waffle breakfast but enjoyed the company.

Below are anniversary cards on the mantel of the fireplace.


Cards with hubby's horse collection






 Hubby's Blue Mountain card at the right said:
Anniversaries are sweet, joyful confirmations. They are milestones in life, looking back on a memory-filled past. They are touchstones for the future, linking together plans and dreams. When two people share so much, their days, their hopes, and their journey, there is little that compares with the smiles that can shine in the hearts of a husband and a wife. Anniversaries are blessings the passing years bring. And they are beautiful reminders that nothing is better than being with the one you love all the days of your life.

My Hallmark card at the left said on the cover:
When I found you my heart knew it was home. Inside it read: There is a safe and quiet place in this noisy, busy, crazy world, and we have found it together.

And Sally and Jim's card had two dogs on the cover who were quoted: It's always fun to buddy up with you. On the inside Sally had written Your friendship means so much to both of us.

Next on the agenda was a 1 pm doctor appointment with husband's doctor. Before that appointment a suggestion came from a family member that hubby needed to be in rehab at a certain excellent center until he got stronger. We went by that facility on the way to the doctor's office. They did have a spot.

At the doctor's office hubby needed help and a wheel chair to get inside. He was that weak. I rushed into the office and invaded the back office, apologize and said I needed help to get my hubby inside for his appointment. Two nurses went out with a wheel chair.

My husband's doctor listened to the situation and said to me before my husband:

Yes he can go there and he may not return home!

That doctyor had also said to me in the hospital last week, Your know, Carol, he is not going to get any better. As we left I told Dr. Chevy that this is our thirteenth anniversary. The plan was that we would go home and that facility would come and interview us today or tomorrow and the doctor was already faxing the form to them. Not your usual happy anniversary to be split up.

Was this in God's providence for our anniversary? On the way home I kept telling hubby how much I love him and that I have his best interest in mind. Was this God's best? I did not know and still do not know. I drove to the front door on our circular drive and hubby got out with the help of a neighbor.

Then I get a call from the facility that they don't take Preferred Care. Hubby will not be going there and we have more time to decide and more time at home. So glad.

Lord, even as my hubby is sleeping now,

bring me sleep and help me to trust that

You are the one who is scripting our days. Amen. 

Time and Caregiving

Time has such a different feel with Alzheimer’s. Our loved ones live in the moment and visuals of what is happening recently or in the past begin to have less recognition.

Joe is a blogger friend with dementia and I regularly read his blog posts for insight into my husband’s thinking. Joe put it exactly when he wrote on Friday: time is no longer a part of my thinking or doing.

Perhaps time is one the most difficult concepts that a caregiver has to wrestle with in the beginning stages of Alzheimer’s. I observe my husband’s use of time as he tries to keep up and to keep acting normal. His Timex watch tells him not only the time, but all so the day of the week and the date. He insists on having a typed schedule for the day, but then doesn’t refer to it.

Nornal hunger signals do not get to him, but he does check his watch to see if it is time to eat. I have to tell him it is time to shower, time to shave, time to eat breakfast, time to take his pills, time to leave the house. He can then rebel when I tell him it is time to do something. For example he will say I am not taking my pills tonight and then several minutes later you might tell him it is time to take his pills and he will take them!

The caregiver is told to never argue with the loved one. You will just go round and round  Yes, they should, but no they won’t. Yes, he said he would do something, but no he is not going to. Your patience is often tested to the limit. Others do not realize the struggles you go through and you do not want to expose others to the difficulties because, I suppose, you appear like a nagging wife or are asking for help yourself. You want to preserve the good name of your loved one.You try to be wise, establish those routines and plan as best as you can. 

Since our loved ones do not have a sense of time and responsibility, you often can capitalize on the attributes that they do have. They can be occupied with what they love to do. Our Alzheimer’s friend Jake loves yard work and being occupied productively. He will not remember all he has done even when you show him visually what he accomplished, but he is very happy with the doing.

My husband will want to do what the group is doing and what his friends are doing. He absolutely loves being a dog owner. Does this sound like childish behavior? Yes. Can I treat him like a child? No. That will not go over well.

My days as a caregiver are spent “going with the flow” and "flowing" with whatever. My responsibilities have increased and bitterness can set in. However, my husband did not ask for this disease, and I am often doing the best I can under the circumstances. I cannot afford to be bitter. I just need to get better--better at managing time myself and finding opportunities to grow in my faith.

I have referred to The Daily Audio Bible on this blog and for years have been going through the Bible this way, listening and often reading along. Yesterday morning one passage was in Mark 6:30-56.  Jesus had just fed the 5000 from five loaves of bread and two fishes. Mark is interesting because of the word immediately in many verses including vs. 45.  Then immediately another emergency came up for Jesus and the disciples--it was windy on the sea. Jesus calms the sea and says in verse 50, It is I; do not be afraid. Verses 51 and 52 follow:

Then He went up into the boat to them, and the wind ceased. And they were greatly amazed in themselves beyond measure, and marveled. For they had not understood about the loaves, because their heart was hardened.

LORD, do not harden my heart. Help me understand immediately when my patience is tried that you are there to calm the seas. My husband may not do something immediately, but you are immediately there for me. Help me remember about those loaves. Do not harden my heart.

Senior Health: Part Eight

I was approved for hearing aids!

I will not have to learn sign language

unless I have nothing else to do! 

Yesterday I got them! 


Sure, I hear,

but not well,

and under the line

of acceptable hearing.

Why did I decide to get tested?

• To see if I can be a better listener to people in my life.
• I am in Toastmasters and cannot evaluate speeches that aren't clear to me. I remember years ago when I was in my 40s a senior citizen in Toastmasters taught me to speak up. Now I want people to speak up and even told a lawyer in Toastmasters he should enunciate, but really it was my hearing that has been the problem.
• My sister-in-law, Sally and my husband all notice my poor hearing.
• I do not hear children well and stopped substitute teaching in elementary school for that reason. When I teach youth and adults I often have to tell them to speak up and classroom talk is often garbled to me.
• Others laugh at things and I have to ask what was funny. Imagine missing out!
• It was time. Hubby says something in another room and I cannot hear him. I go to see what it is.

"You should have heard me the first time," he says and we laugh because we both know due to his Alzheimer's he cannot remember what he said.

You can hardly tell
I have them on.

My audiologist Shanin told me about a program with the Department of Vocational Rehabilitation. This took some time, but I was approved and my hearing aids were funded so I can teach and live without hearing impairment.

You can hardly tell I have them on with these behind-the-ear Siemens instruments. The manual says "life sounds brilliant". Shanin first crumpled paper when I had them on. What a difference! These aids have a thin tube with an open tome for natural sound and a part that goes into the ear that enhances highs where my loss is, I use a battery and monitor how long it lasts by marking the calendar. If there is a small whistling when I put my hand behind my ear, then the battery is still good. I take them out at night and will open the battery door to save that battery. I also take them out when I shower, swim, have my hair done. They have two programs; I can switch from all sounds to only hearing sounds in front of me.

What a difference! I think I like them! Yesterday morning I got my new hearing aids and last night I taught a three hour session of my current class for DUI offenders. When I taught last night I could hear the students. Now when I substitute teach students will not sound like they are mumbling.

Carol