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. 

Saga Fourteen

Without our friends, Sally and Jake, we went camping over the weekend. I forgot my digital camera, but a week later have added pictures to this post. When my husband was frustrated setting up and taking down the popup camper, my husband got angry. On the way home he apologized with his way of saying he is sorry, not remembering what he had said or done, but knowing he upset me. Actually if he didn't have a handicap, I would have been in tears; but I take the anger towards the loved one as part of the deal of being married to a husband who develops Alzheimer's.

Four of Sally and Jake's couple friends were at Highlands Hammock. We apparently need to come one more time before the group decides if they will admit us. The president said there were too few people there to vote on our membership. Things were to go downhill.

Friday night we ate out and then returned to chat at one of the camp sites. However, when we heard thunder and lightning we all headed for our own shelters. I patched a hole in the canvas with vinyl material and quilting safety pins on the outside of the popup. This worked well. Still bugs came in and bit me and I went to urgent care when we returned home.
What didn't work well was the socialization. DH told a story about an alligator crossing our back yard; this story didn't register with me and later I asked him about it and he said he must have confused it with something that happened before we were married. I have not known him to lie, but have read that false stories can develop from hallucinations of the dementia patient. He certainly wouldn't be a good juror.

DH didn’t remember much about Saturday, but just had the emotion that the group was not receptive to us.I noticed this coolness towards us from one of the four couples.  We sat across from Lucy and Paul (not their real names) when we all went out to Dairy Queen Saturday night. We were trying to connect with this couple and that is why I choose to sit near them.

Me: Lucy, do you have any hobbies?

Lucy: I don’t have any hobbies.

Then Lucy and Paul looked away to listen to the conversations at the other end of the table. My husband is very good at conversation with others and he just sat back at that point. When we got back to the campground from the Dairy Queen, he asked me to go get our chairs from the circle where we had chatted earlier in the day. We would not join their Saturday night chat. Someone said "see you tomorrow", but as it turned out we didn't see them Sunday morning--same as the other trip when we only saw Sally and Jake Sunday morning.

At our camp site that Saturday night, however, DH and I did have a good conversation about not being accepted by others.  On another matter I asked him if he remembered what he lost that morning. He couldn’t remember he had misplaced his keys. Then I asked him if he remembered the tour that we took in the afternoon. He couldn’t remember the hour and a half tram ride we took at Highlands Hammock--fabulous tour of wild life, alligators, and vegetation.  Hope the pictures of the tram ride come out and they will be posted here and preserved elsewhere to help hubby's memory. 

But, not remembering his lost keys or the tour we had just taken, DH did remember his feelings about the group.  My usually social hubby felt snubbed. Their next camping trip will be in November. I don't know what his Alzheimer's condition will be like in six months. He certainly has declined in the last six months.

It wasn't the greatest weekend, but I was glad we were able to figure out the popup without Jake and had that interesting hammock tour. Our dog enjoyed his third camping trip, however.

Monday morning, May 23,  I read about Jesus washing the feet of the disciples. We have to wash feet also and He will bless us.

John 13: 14-16  And since I, your Lord and Teacher, have washed your feet, you ought to wash each other’s feet. I have given you an example to follow. Do as I have done to you. I tell you the truth, slaves are not greater than their master. Nor is the messenger more important than the one who sends the message. Now that you know these things, God will bless you for doing them.

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"

What the Alzheimer's Loved One Wants

I am a guest author on Joseph Potocny's blog at http://living-with-alzhiemers.blogspot.com/  Joe has Alzheimer's and Frontal Lobe Dementia and writes frequently about his situation. He is quite an advocate! I also reviewed his book in January and February posts on our Plant City blog and he put those reviews on his blog.  

Recently on Joe's blog I developed nine guidelines to present to Potocny and he wrote six more.  So here are the fifteen guidelines that loved ones may be wanting from us.

1. Don't do everything for me.
2. Listen carefully and figure out the feelings behind what I am saying.
3. Don't nag me. Create a checklist for me to help me remember. The rest of the world has to use check lists also.
4. Enjoy my personality—I am not the disease of Alzheimer's.
5. Plan outings with me and don’t be embarrassed by whatever I do or say in public.
6. Give me visual clues for memory including a calendar.
7. Sing and joke with me.
8. Bring me into your world.
9. Say one thought at a time.
10. Do not hover over me.
11. No sudden changes.
12. Do not ask how I am doing constantly.
13. Watch your being needy.
14. Do not patronize me.
15. GIVE ME MY SPACE AND QUIET TIME.

Thank you, Joe, for letting me pick your excellent brain!

Living Healthy Class

Reminder that the Living Healthy class begins 9:30 a.m. on Wednesday, June 1, 2011 at USFP Applied Neuroscience & Cognitive Electrophysiology Lab, 199 Avenue B  NW, Suite 205, Winter Haven, Florida 33881.   This six week program runs every Wednesday, 9:30 a.m. - 12:00 p.m. through July 6, 2011.   

The class helps develop confidence, skills, and knowledge so that you may more effectively manage your own, or your loved one’s chronic condition. This program is offered at no cost and focuses on:

§  Working with your healthcare team

§  Using medication effectively

§  Handling difficult emotions

§  Exercising and healthy eating

§  Communicating effectively

§  Managing symptoms

§  Relaxation strategies

§  Managing pain and fatigue

The class size is limited.  If you have questions, concerns or wish to RSVP, please call Stefanie Thompson at (863) 292-9210 or email her at thompsons@alzflgulf.org. 

Saga Thirteen



Two Signs from Cracker Barrell
Cherish Each Day
Family Is Everything

My husband's family couldn't come for Easter at our home as they had some other years, and so we headed to my family in Huntsville, Alabama. For this trip which was over 700 miles DH drove about 2/3 of the way there.

When we returned home, we did it in stages. Monday after Easter we traveled to the Birmingham area where we were guests at an author's home that I have been corresponding with. With DH there we talked openly about Alzheimer's. DH was most charming in the conversation.

Tuesday we left for Plant City. Hubby drove from Birmingham to Montgomery, a difficult trip because of wind, construction and traffic. I thought he managed the driving well. When we got to Montgomery, he said he didn't want to drive anymore and I finished driving that day as we returned home. That next day the tornado would devastate Alabama. Everyone I know in Alabama is safe, although my brother and family do not have electricity. CHERISH EACH DAY especially when your husband has Alzheimer's. You never know what a day will bring.

Also that next day (last Wednesday after our Easter trip) my husband had surgery on his scalp for basal cell carcinoma--about 12 stitches. Pray that it heals and that the dermatologist got all of the cancer. After this surgery he asked why his head hurt and I had to remind him that he had surgery. When all is said and done a going-bald husband will not be able to hide this scar.

Jake and Sally came over Friday night for pizza and a game of Mexican Dominoes. We just played up to number six and Jake won, much to his surprise.

Recently Sally had the Byrd Alzheimer's Institute have a meeting with Jake's adult children. My pastor has also been in touch with DH's adult son. Meanwhile Sally and I get so much support from one another. Jake had quite an episode on Friday and she was able to unload to me when they came over Friday night.

My friend B.W. who doesn't officially follow this blog but read the last post, remarked in an e-mail  to me that she would like the kind of marriage that DH and I have. I e-mailed back to her:

It’s a commitment—for better, for worse, in sickness and in health. At first when I realized the Alzheimer’s I sort of withdrew from [DH] emotionally, realizing I would be a widow AGAIN. But he would be lonely if I did that and he daily tells me he loves me. Many caregivers don’t give the support to their family members that they need and then the patient becomes angry. I keep learning a lot about this.

I am about to go watch the Larry King special on CNN shortly. Hubby has gone to bed. He usually monopolizes the TV, but I get to watch this Alzheimer's special myself. Just in case I fall asleep, though, I am taping it. See Larry King Special .

Saga Twelve

“An unhurried sense of time is in itself a form of wealth.” ~~ Bonnie Friedman

Our second camping trip with Sally and Jake. DH is obsessing all week about what is bothering him. So is Jake. When we get to Lake Manatee State Park, however, all obsession seems to be forgotten. We have been invited to a group of campers that Sally and Jake have been camping with for years and if we camp two times with this group, they will either vote us in or not. I wonder if they want another Alzheimer's husband in the group.

Other things besides the husband's obsessions are forgotten also. We are at our campsite and Sally and I disperse our husbands to go and get Jake and Sally's chairs. Guess what! Neither of them remember and they take a walk around the circle until we see them. No camp chairs! How many other wives whose husbands do not have dementia disperse their husbands to get something and they do not come home with the item?!

The group has

been together

camping once a month

for years

except during Florida's

hot summer months. Fine folk from several different churches in the Tampa area. Next month they will vote on our membership when we also join them. I think Sally and I have a great time camping with our husbands and we might as well do it while we can.

Friday night includes eating at a restaurant. I drive the four of us so Jake doesn't feel bad about his not driving now. At Cracker Barrel DH and I buy each other anniversary gifts that we each select for ourselves. I get some costume jewelry--necklace and earrings. DH buys a cap because he forgot his at home. (He also forgot his cell phone or else lost it again.) He thinks his cap is funny--it says "My IQ Test Came Back Negative". Now if he were seriously worried about his Alzheimer's, I don't think he would buy such a cap. But he isn't worried.  

Saturday includes a potluck lunch at noon. In the evening at 5:30 there is dessert and leftovers from noon. The group all sit around and chat after both meals and other times. Saturday morning Sally and several other ladies go to a neighborhood yard sale. DH and I are sitting at our site when Jake comes driving by on his bike. He doesn't know where his site is and where Lana is. I tell him all is well that Lana is with the ladies at a yard sale. Saturday afternoon the guys chat and Lana and I join a group for "Mexican Dominoes". My back can't take playing many games and so DH and I take off to get a smoothie at O'Brien's down the road from the park. Meanwhile the men return to their sites and Jake cannot find Sally again; he takes off on his bike to find her and people at the dock help him return to his site. Sally feels bad that she had her cell phone off when he was calling her. Sally came in second in the Mexican Dominoes game, however!

O'Brien Family Farms.  My husband, dog Ziggy and I enjoy this excursion. The farm lets you pick standing up and includes field trips from school age children. We take our pictures in the stand and enjoy our smoothies before returning to camp.

Since we hadn't gotten cards for our anniversary today, we wrote them. I wrote:

On this anniversary I want to say how much I do
love you. I cherish our camping this weekend
and appreciate the LORD's help in all the
adjustments we keep making in our senior years.
Thanks for letting me be me. I promise to be the
best wife I can be to you as we take care of each
other. Love praying with you each night also.

DH  wrote:

No other place I'd like to be than here.
No other person I'd rather be with than you.
Ziggy and I love you. You are in our dreams always.

I am enjoying my husband's love and hate the thought that one day he may not recognize me as other Alzheimer's spouses experience.

When you have a used popup (we bought it from Sally and Jake for $50), things may not go smoothly. It has been repaired in two shops. This morning I used the microwave for the first time to warm up coffee for DH. I blew a fuse! But when Jake and Sally came by later for fresh coffee we had then made outside the camper, Jake checked out our fuses and fixed it with our spare fuses and now I know how to do that. I thanked Jake profusely.

DH just does not do problem solving with fixing things anymore, and he has less energy. He even forgot that the electricity had gone out as we talked later. I just have to use that microwave outside with a separate extension chord in our gorgeous Florida weather, and I have to keep learning how to take care of things my hubby used to do. Sally is even learning to drive a bigger RV now and back it in. I am learning all I can about this popup camper.

Thank you, LORD, for our anniversary and for this weekend.

Turmeric Coconut Oil Toasted Cheese Sandwiches

There has got to be compensation for short-term memory. See Brain Cell Compensation . I do think my husband uses other parts of the brain to help him even if there are less neurons and neurotransmitters in his hyippocampus. When something is significant, he seems to compensate. Yesterday he had an appointment with a demotologist and today he was talking about his possible skin cancer. He also takes a lot of notes. While I worked today outside the home he got some energy up and cleaned our bathroom floors and mowed the lawn. I am so proud of him.

I am standing by coconut oil. It has so many benefits. I have written about it here since the summer of 2009. But I now am adding the spice of turmeric.

On the Alzheimer's Reading Room Vit. D3 and Tumeric:

UCLA researchers have identified a new biomarker that could help them track how effectively the immune system is able to clear the brain of amyloid beta, which forms the plaques considered one of the hallmarks of Alzheimer's disease. Scientists ID possible biomarker to gauge Alzheimer's prognosis, effect of therapies

The pilot study, currently published online in the Journal of Alzheimer's Disease, demonstrates how the immune gene MGAT3, which is essential in clearing amyloid beta, is expressed differently in different Alzheimer's patients. The finding may be useful in providing more highly individualized disease prognoses in the future.

It may also help researchers understand which patients will respond to therapy with vitamin D3 and curcumin, a chemical found in turmeric spice, both of which were shown in previous studies by this UCLA research team to help stimulate specific immune system cells to clear amyloid beta in a laboratory test.

From India, curmunin from Tumeric "demonstrates neuroprotective action in Alzheimer's disease" and other illnesses.

Now I can't get my husband to like fish or fish oil. More from the Alzheimer's Reading Room on Fish Oil He does take flax seed oil tablets which also contain omerga-3. I asked his primary care physician about D3, but we didn't persue this strategy at this time.

One can get turmeric as a spice. I put it in dishes now. Here is my simple recipe for toasted cheese sandwiches:

Put coconut oil on the outside of bread sandwiches and place them in a sandwich maker. I have had my Snakmaster for maybe twenty years. On the inside sprinkle turmeric as shown at the right.


Then place two slices of cheese on each sandwich. Close the lid for about four minues. My husband loves these sandwiches and he gets both coconut oil and tumeric!

I serve these sandwiches  with  a "parfait" I make from  Activia, blue berries and Kashi cereal for the crumbles.

Saga Eleven

The days go by so quickly.  I know Sally has a lot on her plate with Jake not driving and complaining that he can't drive. DH asks when will we get together with Jake and Sally again. We do go out to dinner with them and the conversation revolves around how mad Jake is about not driving; however he does say that Sally is a good driver (he wasn't so sure before). I know Sue has a lot on her plate also; she even had to Baker Act her husband due to his Alzheimer's. Pray for my friends in a similar situation. 

I am up to my ears with things to do. Probably every one is. I am working on a counseling degree, have taxes, and have never really finishing organizing the house, desite FlyLady and Barb's Cleaning Up the Clutter. Last week I worked  out of the house six days. I have yet to put DH's monthly Facebook photo album up to remind him of what we did in March and it is already April 5th! The home is not in the condition that I wanted at this time. We go twice a week to the chiropractor now. I was hurt more than DH in the crash last December, and so my moving boxes, decluttering in the house or working in the yard sets my back "back" until the next chiropractor visit.  I have sewing to do, etc., and was reminded that I am behind in blogging here. How can I get 70 followers who pray for us and for whom I can pray if I don't blog! I have so much more to write here.

However,  DH is doing just great! I think the brain health supplements (Ribonucleic Acid from Whole Food Supplements and the CoQ10) recommended by our chiropractor for DH and the Turmeric spice I add to foods are helping him. He has such a great attitude and strives to keep on top of what is going on. He is not on any anti-depressants as some dementia patients are.

We are making some financial headway because we don't have any car payments now (due to the crash) and  have Preferred Care instead of AARP. When I get a chance I want to find a coupon buddy here in Plant City and start saving money on our food costs. But everything takes time.

What do I accomplish?  I every day read Scripture, again going through the Bible in one year with The Daily Audio Podcast. I don't only listen--some days I only read the OT, NT, Psalm and Proverbs selections without listening. So this was in my dailly Bible reading this week from Luke 10:40-42:

Martha was distracted by the big dinner she was preparing. She came to Jesus and said, “LORD, doesn’t it seem unfair to you that my sister just sits here while I do all the work? Tell her to come and help me.” But the LORD said to her, “My dear Martha, you are worried and upset over all these details; There is only one thing worth being concerned about. Mary has discovered it, and it will not be taken away from her.”

LORD, enhance the Mary in me. I better not turn into a Martha concerned about what I don't accomplish or who should be helping. I will just prioritize and not be weary in well doing (Galatians 6:9). D. Martyn Lloyd-Jones writes in Spiritual Depression: Its Causes and Cure (one of my course books):

You are tired and weary and you feel at times it is too much for you? Go back and look at your life and put it into the context of eternity. Stop and ask yourself what it all means. It is nothing but a preparatory school. This life is but the ante-chamber of eternity and all we do in this world is but anticipatory of that. Our greatest joys are but the first fruits and the foretaste of the eternal joy that is coming. . . . We are too immersed in our problems. We need to look ahead, to anticipate, to look forward to the eternal glories gleaming afar. The Christian life is a tasting of the first-fruits of that great harvest which is to come. (pp. 200-201)

LORD, thanks for my "to do" list. Help me not be weary, to prioritize and realize this world is not all. Amen.

How to Manage Worry

Perhaps some people do not want to read this blog because it might cause them to worry.  What if this happens to my loved one? What if I get Alzheimer's and how will my spouse manage? I must confess that last year about this time my worry blossomed big time.

Then I started instead to learn all I could about the disease and make the best possible situation for DH (dear husband). I began going to an Alzheimer's Association support group once a month. Slowly I have begun to live for the moment--we camp now and we even went dancing with Jake and Sally! Bob on the Alzheimer's Reading Room advises to live your life as you always have. I became concerned for the concerns of others. Today DH and I  visited Sue whose husband has both Alzheimer's and cancer. The life of a caregiver is not all about worry. Some call changes the new normal.

I am determined to not be a worry wart. I have been immersing myself in Scripture. How does Scripture help me? It  helps me, for one thing,  accept my imperfections, my sin, and do something about it. Scripture helps me not to be proud about anything I can do, be, or become and gives me guidelines to help me live out my faith, to be obedient and content with my calling as a caregiver. Scripture helps me cope. I post Scripture highlights on my Facebook notes every day now since the beginning of January.

Last Monday morning I was going to substitute teach at two schools (one in the AM and one in the PM) and had too much to do to get out of the house. I started feeling sorry for myself (sinning), barking orders at DH--get my watch, plant flowers today so they won't die, don't forget to take your pills, eat your breakfast and please make your lunch--I don't have time! He can't handle all those verbal orders and inside of me I knew that I needed to be calm with him. I was as angry at all I was having to do just as I read earlier that morning about Balaam in the Old Testament book of Numbers.  Balaam beat his donkey for not obeying him. But with the Scripture reading I saw that Balaam had to learn to do ONLY what God wanted him to do. To get through to Balaam God even had to have his donkey talk to him! I had to see that I can only do so much and it's okay--what does God want me to do or not do?  I called DH and apologized for my short-tempered barking out of orders to him.  Everything worked out fine on Monday and even when I came home my husband, who is often unmotivated, had put flowers in the planter boxes! Christ uses Scripture to work out sancification (His best) in my life and helps me calm down with input such as the story o Balaam.

Isn't worry justifiable, understandable, for the caregiver?  I am taking a class on anger, worry and depression. One of the books for the course is called Down, But Not Out: How to Get Up When Life Knocks You Down, by Wayne A. Mack. Mack has the nerve to call worry a sin but says we can overcome it! We learn first that the foundation for overcoming anxiety is a personal, vital relationship with Jesus Christ, he writes. Putting struggles in perspective he continues:

As believers, we have trusted God for our salvation, for forgiveness of sins, and for a guarantee of eternity in heaven. Why then are we not willing to trust Him for our food and clothes and health and all these other things [a husband with Alzheimer's] that are of infinitely less important than our salvation? (p. 72) . . . When we experience anxiety, we need to make sure that we surround ourselves with godly people who can encourage and admonish us. In other words, people who can lift our spirits but who can rightly point out our sin in a loving manner. (p. 77)

So many people who comment here do lift my caregiver's spirits. Above all,  God can be trusted with the road ahead and my worry will not add to the outcome. The Lord has led in the past. There is nothing He and I cannot handle together.

Wonderful Scripture supports this peace the believer can have.  Mack himself expounds on Philippians 4:6, 7:

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. New Living Translation

Worry can be managed, folks. What Scripture or techniques help you?