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

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

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

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

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

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

Thanksgiving Week

Read Sunday morning from Psalm 118:19-21, 29 NLT

Open for me the gates where the righteous enter,

and I will go in and thank the LORD.

These gates lead to the presence of the LORD,

and the godly enter there.

I thank you for answering my prayer

and giving me victory. . . .

Give thanks to the LORD,

for he is good! His faithful love endures forever.

• Love going to church today in a few hours. So does DH. We bring our lunch and eat together after the worship service. Then we have a counseling class. DH listens while I take notes. I will be finishing up a counseling degree in the next several years. My current paper will be on "Dying Well".
• We are not going to be camping with that group. A call was made to say we weren't accepted. Both DH and I are at peace with this (although DH might be hurt). We still can camp with Sally and Jake. Sally and Jake are still in the group, but Sally speculates that it is because this group didn't want another person with Alzheimer's.
• By book is now an eBook on Barnes and Noble. Go to bn.com and purchase at $7.69 for your iPad, computer or Nook. Just type in "Getting Off the Niceness Treadmill", the name of the book.
• I went to a Christian Writer's Conference all day in Orlando Saturday, November 19th. Thanks to Sally and Jake for taking DH to lunch while I was gone. DH is able to stay home by himself, but that sure was wonderful that they thought of this. Sally and I are thinking about introducing our husbands to senior day care, which might work if they go together. These men always have so much fun together. Sally increasingly has to be with Jake and this may help if our husbands can both hang out at a senior day care; they love telling each other the same things over and over.
• Obsessing. DH now obsesses about that camping group. Jake obsesses about not being able to drive and DH made the mistake of driving when the four of us were together recently. Sally told me later, that it really didn't matter. Jake obsesses about how unfair it is that as a man he can no longer drive. DH often comments on Jake and genuinely cares for him.
• DH genuinely cares for me. I love him also.
• I have a week off--no subsituting the week of Thanksgiving. We will be with some of DH's extended family on Thanksgiving. I have a week off to de-clutter, clean. and decorate for Christmas.
• Most of my Christmas shopping is done. My creative gift this year for birthdays/Christmas is not a quilt like the last two years. This year it is Scripture highlights I have been working on each day. These highlights are printed in a binder for selected people. One family member didn't want it because he said it is "too preachy"--so he is getting an iTunes gift card. Other family members are excited about a binder of Scripture highlights. This is not necessarily a cheap gift for our budget, as I have had to buy additional printing cartridges, binders and mail the binders. The binder shows my excitement for God's word and how it sustains me each day.

Saga Sixteen

It's been three weeks since I have posted here. Note, if you just want to read our sagas, go to the right and click sagas. It really tells our story.

Speaking of our story, my husband and I now freely talk about his Alzheimer's and Vascular Dementia. In fact, we have been to two support groups (July 28 and August 8) where both the person with Alzheimer's and their spouse/caregiver are part of the discussion. Both of these have been at the Alzheimer's Association in Eloise, near Winter Haven, Florida. At the second one some of those with Alzheimer's painted; you see, folks, the economical Alzheimer's Association rents rooms with an art association. Sally and Jake were not at these sessions. August 8th they were babysitting a grandchild, and July 28th they were on a trip to the mountains.

Their trip, you think, would have satisfied Jake's yen for the South Carolina mountains and the cabin he built there and later sold. Sally and Jake rented a nearby cabin and went to the church they were used to going to when they stayed up there, but the road to the cabin that Jake build had a chain link on it and Jake was not able to see that cabin and how the new owners were doing. Somewhere in the recesses of Jake's stage-two mind he thinks that he and my husband can get up there and live without us wives. My husband knows better. At one point on their vacation he wanted to walk "home", but Sally was able to get him back to their rented cabin. They came home last Thursday. When we went to dinner the next night, Jake had trouble recalling his recent trip, the horseback riding, etc.

This afternoon Sally and I are going to our monthly Alzheimer's Association meeting in Plant City. Jake will hang out at the house with DH. This morning DH and I discussed orienting Jake in pool playing. Jake actually won a game with me once--not hard to do. I cleaned off the pool table from all my projects (currently I am teaching a counseling class) so they can play pool. Hope they do play pool while Sally and I are gone. DH, after all, gets very bored with Jake's obsessions about getting his driver's license back, and stealing away to the mountains. This is not to say that DH has no obsessions now, but I have learned to manage his obsessions.

My husband is happy and not bothered by his disability. When we go out to eat we blow the straw paper covering at each other before putting it in our cold drink. We play blue grass music and when the four of us are out, both Jake and DH sitting in the back seat of the car move to the music. DH and I sing  the song "Side By Side" in the car (I have it on my iPod).

Oh, we ain't got a barrel of money

Maybe we're ragged and funny

But we'll travel along

Singing our song

Side by Side

Don't know what's coming tomorrow. . .

Ironic. In fact, I don't know what's coming tomorrow, but live one day at a time, ever grateful that my husband and I have such good times and communication.

Ten Top Caregiving Mistakes

1. Thinking you can do this on your own. You need a support group or system for YOU, the caregiver.
2. Thinking your loved one fits a pattern of another person with Alzheimer's. Everyone is different and diagnosis is tentative. My husband has Mixed Dementia, for example, and I am so fortunate at how pleasant he is.
3. Thinking you can argue with a person who has Alzheimer's. It won't work. He will obsess about an issue that is on his mind. She will want to do things from her long-term memory that maybe she can't any more--just let her try.
4. Not establishing a schedule or routine for your loved one. This morning my husband wanted me to print out that schedule, even though we are essentially staying home.
5. Not being proactive and not thinking down the road. Simplify life, have your will completed. How can you make the house safe? How can you keep items where they belong so that your loved one knows where to find it?
6. Withdrawing from your loved one emotionally. They have changed, but that doesn't mean they don't have emotions. They lose memory, but not fondness for your love. And you need their love also!
7. Stop living your life! No! Go to Disney if they can handle it at their stage. Take them along on errands as long as they can do this with you.
8. Being embarrassed by your loved one. Wink at someone when you know they are hearing a story for a second or third time.
9. Doing too much for them. There is a lot they still can do to help. My husband folds laundry I put on the pool table. He also fills up bottles of diet Lipton green tea and water. (We reuse our bottles.) He mows the lawn on a riding lawn mower and sometimes weeds.
10. Throwing your hands up in despair.  Life doesn't owe you no problems. God is there for you.

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.