Tuesday, June 24, 2014

Precious Last Days

Photo by Chris Noren in Hawaii
Last Thursday, June 19th, the Hospice nurse read to me from the booklet. She saw the signs that the end-of-life was approaching and of course the Hospice policy is to make death as comfortable and humane as possible. He was dying, so gaunt, but the morphine made it so he wasn't in pain. Please understand this.  

It was time for a relaxing medicine and for morphine--every four hours. My neighbor, Kenny, who has seen deaths in his extended family in the past month, helped, giving those first doses to my husband--even coming back every four hours through the night. Another hospice nurse came out and he gave me further instructions on the medicine such as how to fill the syringes. I practiced this. After that nurse gave me confidence to administer the meds, I did--a very, very hard task for me.

Friday morning, June 20, the Hospice Home Care Aide came as usual. She is very competent but I also helped her. It helped me cry. He was awake with the bed bath and changing of the sheets and so I told my husband I loved him, Jesus loves him and there is a place in heaven, a home that Jesus has prepared for him there. He mumbled/mouthed that me loved me. This made me cry again because I was happy he communicated. My husband has been made comfortable.

Monday morning, June 23, the every four-hour alarm on my iPhone went off at 5:30 am to give hubby his medicines. Only when I woke up there was no breath and no pulse. I gave the medicine anyway just in case.  But again a warm body but no breath and no pulse. Then I called the Aqua Team of Hospice and within the hour a Hospice chaplain and a nurse came out to the house.

The nurse preformed various tasks including calling the funeral director. The chaplain let me talk. He also read from John 14:1-6 where Jesus said we should not be troubled because he was preparing a home for us in heaven. Thomas questioned this, even as every loved one questions death of a spouse.

Thomas: How can we know the way? 

How can I go through his pain of widowhood again? How can I too go to my Father in heaven?

Jesus: I am the way, and the truth, and the life; no one comes to the Father, but by me.

This is the essential good news of the Gospel. I have always known that since a child who at seven years of age remembers asking Jesus to be my Savior—my way to God. But it occurred to me that Jesus is the way to navigate the choppy waters of widowhood. His truth is in Scripture. There is life that will continue and one day I will be reunited with all my departed loved ones in heaven.

Then out of the Companion to the Lutheran Book of Worship he read this prayer:
Into your hands, O merciful Savior, we comment your servant, [my husband’s name]. Acknowledge, we humbly beseech you, a sheep of your own fold, a lamb of your own flock, a sinner of your own redeeming. Receive him into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.

After some time the black-suited funeral directors pulled up and put my husband on a gurney and brought him out of the bedroom. I had been carrying dog Ziggy, and the men stopped by Ziggy and myself. Ziggy licked my husband’s face and I kissed his cold face. Then before us they covered his head with the rest of the red cloth and brought him outside to a black van while I sobbed healing sobs. At midday the regular Hospice nurse came; she hadn’t heard the news and we hugged and grieved together. The aide who had come most morning heard the news and she came also later in the day to be with me and we grieved together. Such a wonderful team—those Aqua people. They let my husband slip gently into the arms of Jesus. He was ready.  

So how am I able to cope thirty-six hours later? Prayers of you all and Scripture.  For example, four women and I have been sending each other Scripture each day.  Georgene who regularly comments on this blog started it last year and then Betty came along. Soon there were two more, Pokeberry Mary and Kim. Here is a sample of Scripture I have been treasuring that I am meditating on now.

   When I am overwhelmed, you alone know the way I should turn. Psalm 142:3 NLT

   Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world. 1 Peter 4:12-13 NLT

   You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. Psalm 139:16 NLT 

In the fourteen years of marriage with my now deceased husband, about half of them were about Alzheimer's. This blog grew along with my faith during those 7 years. I am grateful for those years. I am grateful that my husband is with the LORD now. As a Christian I have that assurance also according to 2 Corinthians 5:8 that to be absent from the body is to be present with the LORD.

Wanna Hang Out?
So now I am about to change my marital status on Facebook to “widow”, help prepare the memorial service program and bio, and begin to do grief work. I have been a widow once before and know Scripture that speaks to widowhood and those promises of our LORD to protect me.

Last night I hung out with a family from my church thoroughly enjoying the parents and the four children. I just asked them if I could come over. The youngest wore this T-shirt. 

Hanging with people and hanging with the LORD is how I will cope and heal. Scripture says he puts widows in families—even the family of the local church.

Tuesday, June 17, 2014

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.  .  .  . 

Thursday, June 12, 2014

Book Review: The Graduation of Jake Moon

Barbara Parks writes fiction for youth, and one of her novels helped my friend's granddaughter deal with her grandfather's Alzheimer's. Sally's granddaughter wrote:

Jake's grandfather used to be the man of the household. When the third day of the third grade comes, Jake gets unfortunate news about his grandfather being diagnosed with Alzheimer's Disease. 
Jake has called his grandfather Skelly since he was a little boy and he quickly realizes that things aren't going to be the same. Things just got worse and worse for them. Sometimes Skelly wasn't even aware of his surroundings and becomes more and more depressed. Jake started to disengage from his own social life. Jake describes Alzheimer's in three different stages: 1) sad; 2) sadder; and 3) the saddest thing you would ever see.  
Jake and his family had many ups and downs (mostly downs) when they found out about Skelly's disease. Then, however, they become more caring and loving than ever before. 

 My friend Sally wrote:

The book was especially appropriate for middle school aged children. The book didn't explain the medical details of A.D. (the book is fiction), but my granddaughter, aged 12, often would identify with Jake's feelings of embarrassment of Grandpa. She would say this sounds like something grandpa would do.

I would highly recommend this book. It kept my granddaughter's interest, was a fast read and written for the age group of 11-14. Often I had given my granddaughter books and articles about A. D. so she could understand the disease and its effect on her grandpa who is in the middle stage. What I had given her didn't keep her interest like this book. 

Google it or ask your public librarian to get it for a summer read or listen.  Special thanks to the Media Specialist at a Plant City middle school who pointed out this book, and of course to "Sally" and her granddaughter who share this journey of caregiving for grandfather "Jake"* with us.

*"Sally and Jake" are not my friends' real names. The grandson in the book is also named "Jake".

Wednesday, June 11, 2014

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.


Sunday, June 8, 2014

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)

Thursday, June 5, 2014

Bedridden Apparently

Hubby drinking Boost and Dog Chilling
The Hospice home health aide was here first thing this morning. I told her about the hard evening where Kenny and I tried to get hubby into bed last night.  Kenny has a bad back and his back was certainly hurting when he went home last night. The aide and I decided to keep him in bed until the nurse came instead of putting him in the Geri chair.

Before the aide left, the Hospice nurse came for her weekly visit and the two conferred about my husband. I told the nurse about the extra pain pill I gave my husband this morning (four hours after the 4:00 am one). It turns out I wasn't supposed to do that. However, she will now let him take Tramadol four times a day (every six hours) instead of three times. She ordered Liquid Tylenol three times a day.

She looked at that arthritic right knee and wondered if the ligament was worse. She is sending someone to X-ray it.  I told the nurse about the problems we have been having getting him to bed and about the night recently that his right knee leaned over the bed and he was in pain. That night I had to put a chair beside the bed with a pillow and an ice pack and he went back to sleep.

Had he fallen since Hospice? she asked.

Yes he has, I said as recorded last month HERE,  and he is increasingly less ambulatory. 

You see, folks, my good-natured husband had started recently to protest getting out of the GERI chair into the wheel chair and into bed.

"NO! NO! NO! NO!" 

May 27th it took one and a half hours to get him to bed. One night at 10:30 pm I went to get two strong men (Kenny's kin) to help get him to bed. I just thought he was stubborn and that this was the Alzheimer's NO sounding loud and clear. Hubby certainly is less able to explain himself. He didn't say that he did not want  to take a few steps between the Geri chair and the wheel chair because it hurt. I assumed the Alzheimer's stubbornness was kicking in. Now the nurse told him to stay in bed and I will begin that regiment of turning him every few hours to prevent bedsores.

Also the Hospice social worker made her weekly visit this morning. She was scheduled to come Friday, but the nurse alerted her to come today. She asked about my stress level and about my getting out of the house (respite). Yesterday was a hugely stressful day, I told her. However, I was happy to report to her about friends staying with hubby so I can go to church for our 2 pm Sunday service, and about Sally and Jim staying at our home for two Saturdays when I am contracted to work for a DUI assignment. The social worker is arranging some options where I can pay Hospice for respite. She was happy to hear that an application is in to the West Central Florida Area Agency on Aging which will take longer to happen. Hospice and this agency can work together. Kevin who represents this agency is in my Toastmasters club and he called Tuesday to get this in the works. Maybe respite will happen by the fall so someone can be with my husband while I substitute teach. Kenny is less able to help these days and you may recall that he has his mother to attend to and his own doctor appointments.

Verses I Am Meditating On

I canceled 20 days of substitute teaching in May and June and need wisdom for our finances that our resources cover the summer. Proverbs 16:18 reads Better is a little with righteousness, than vast revenues without justice. 
LORD, help me to be righteous with my little. Help me to be careful with our moneyHelp respite to come through so I can work for our bills. Thank you for provision in the past. Amen. 
Proverbs 16:9 reads A man's heart plans his way, but the LORD directs his steps. When this widow (me) married my godly husband in 2000, I had no understanding of how things would go. My heart had a plan for our senior years. I had a plan to fit into a new family and retire without having to work, but the LORD has taken me in the direction that He has chosen for me. In His direction I have seen His mercies every morning. It is not all gloom and doom (although there is anticipatory grief for sure). I know that my husband when he dies will be with our LORD in heaven and then reunited with his body when Christ comes back to earth. This is my hope as well. We senior Christians get to have this happen sooner than most believers.