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 .