Book Review: The Best Friends--Part Three

See Parts One and Two Below

The authors of this book offer suggestions to the caregiver: 

• Maintain a sense of humor. This is why I put the last post on humor in.
• Seek out someone to confide in. I want to scream sometimes. I wanted to cry yesterday. A woman at church whose mother went through Alzheimer's is now my confidant. I will talk to her today if she is at church. The fact that she is covenanted to be there for me makes me feel my church is working for me now.
• Set realistic expectations. "How much money can I spend on caring for my loved one without jeopardizing my family's financial well-being?" (p. 198) Our finances are pretty precarious. I balance entertaining my husband which costs money but keeps a normal life going vs. paying off credit cards so I can stay home and take care of him when there is no other option. I know that day is approaching and may be here sooner than I think.
• Develop strategies for handling unhelpful advice. This hurts so much. People just mean well, but sometimes they just don't know my tears and fear. The authors suggest saying things like Thanks for your concern. I think of Christ's attitude: Father forgive them, and pour my heart out in prayer. In fact, I wish many people were praying for us. People are busy. I realize I need to pray for them and have started doing that. My little world is not all that breaks my Savior's heart.
• Keep up contact with the outside world. Caregivers "should try to make at least one call each week to a friend that they have been too busy to see or talk to. Also, many caregivers find new friends through support groups." (p. 198) This blog is contact with the outside world, and I do not know who reads it. I have family and friends who say they don't read blogs, yet do they realize that calling on the phone in the middle of the night just won't work? That so many of us caregivers just have to blog. Do they understand?
• Modify or change the living environment. Our home works for us, but the authors ask if it is hard to maintain. Yes it is. 
• Listen to one's body. I am dieting now and have been to the gym. So far my slow weight loss has resulted in more energy.  
• Be good to oneself. They say give yourself presents. I spent under $50 this month on clothes on sale, and it did lift my spirits.
• Plan ahead. I do not have a workable plan should I predecease my husband. However, Sally and I think we might be able to provide respite time for each other while both of us are alive.
• Forgive others and oneself. The authors write, "Alzheimer's disease finds people at their best and at their worst." Among the caregiving community I read about selfish relatives, and why doesn's so and so call or help, etc. Yesterday we went to Sally's birthday party. I admire her for living every day to its fullest. I admire that not only was her own son and family there, but also three stepchildren (children of her Alzheimer's husband by a previous wife) were at her party. I wish I had that kind of local family support. I try to not go there in my thoughts, because I can only control myself. This is why I rush to the LORD in prayer for others and their needs:   LORD forgive me for allowing self-pity at times and for expecting family and friends to behave so and so.  Thanks for the times they do come through for my husband and myself. Thanks for cousins Linda and Ron who from the other end of the country actually read my blog.
• Keep a diary or notes of caregiving experiences. So much happened yesterday. I did not slept well last night.DH was angry with me, and then forgot he was angry with me. Repeatedly his short-term memory crept in. I kept a lid on it all and wanted to scream and cry by the end of the day. One should award me an academy award for being so pleasant yesterday. I wrote more here, but somehow the posting of my difficult day got erased. I do indeed need to take heed to being "my own best friend" along with my husband's. And there is a FRIEND who sticks closer than a brother.

In the movie "War Horse" which we saw last night, a main character walks toward the injured horse on the battle field while quoting Psalm 23: Ye, though I walk through the valley of the shadow of death. . . . Today is the Sabbath. I so need a day of rest and worship.

Humor

This "Summary of Life" was passed on to me by e-mail by my my MN friend Barb.

GREAT TRUTHS THAT LITTLE CHILDREN HAVE LEARNED

1) No matter how hard you try, you can't baptize cats..
2) When your Mom is mad at your Dad, don't let her brush your hair.
3) If your sister hits you, don't hit her back. They always catch the second person.
4) Never ask your 3-year old brother to hold a tomato.
5) You can't trust dogs to watch your food..
6) Don't sneeze when someone is cutting your hair..
7) Never hold a Dust-Buster and a cat at the same time.
8) You can't hide a piece of broccoli in a glass of milk.
9) Don't wear polka-dot underwear under white shorts.
10) The best place to be when you're sad is Grandma's lap.

GREAT TRUTHS THAT ADULTS HAVE LEARNED

1) Raising teenagers is like nailing jelly to a tree.
2) Wrinkles don't hurt.
3) Families are like fudge...mostly sweet, with a few nuts.
4) Today's mighty oak is just yesterday's nut that held its ground.
5) Laughing is good exercise. It's like jogging on the inside.
6) Middle age is when you choose your cereal for the fiber, not the toy.

GREAT TRUTHS ABOUT GROWING OLD

1) Growing old is mandatory; growing up is optional...
2) Forget the health food. I need all the preservatives I can get.
3) When you fall down, you wonder what else you can do while you're down there.
4) You're getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
5) It's frustrating when you know all the answers but nobody bothers to ask you the questions...
6) Time may be a great healer, but it's a lousy beautician
7) Wisdom comes with age, but sometimes age comes alone.

THE FOUR STAGES OF LIFE

1) You believe in Santa Claus.

2) You don't believe in Santa Claus.
3) You are Santa Claus..
4) You look like Santa Claus.

SUCCESS

At age 4 success is . . . . Not piddling in your pants.
At age 12 success is . . . Having friends.
At age 17 success is . .   Having a driver's license.
At age 35 success is . . . Having money.
At age 50 success is . . . Having money.
At age 70 success is . . . Having a drivers license.
At age 75 success is . . . Having friends.
At age 80 success is . . . Not piddling in your pants.

Finally, Joe put this video song on his blog. http://www.tomrush.com./video_remember.html Joe who has mixed dementia thought it was hysterical--it is. The song doesn't end because Tom Rush couldn't remember how it ends.

Our humor. My husband forgot his false teeth when we took our car in for repairs yesterday morning. We had breakfast at a nearby place--he had yogurt and gummed a muffin. He said, "Carol, don't put this [fact] on Facebook." Oh my! He has no idea about this blog.

Book Review: The Best Friends--Part Two "The Knack"

Bob DeMarco from the Alzheimer's Reading Room writes:  "Television is a good baby sitting tool, 

it is not a good Alzheimer's caregiving tool.  In fact, too much TV will bring on the "dull"  faster than a speeding  bullet."  

I just never know how to involve my husband in "meaningful" activities.  "Wouldn't it be just great if he could do puzzles!" people suggest.  "Can you keep him busy?" you ask.  He watches old movies most of the time. This is what he wants to do. I am concerned, but yet trying to work to pay off bills for when I have to stay home to take care of him. He loves being retired and with our dog.

All I do know is that he is contented and I realize as a caregiver I must be doing somethings correctly--that I have a "knack". He loves it when I call him while I am away, but doesn not seem depressed at all.

It's like adopting a special needs child but not letting them know they are deficient but showering them with love. Perhaps there is no need to educate my husband on what is coming down the pike for him, that he should be doing puzzles. Ten years ago I knew very little about dementia and so did he. When he was diagnosed with dementia in December of 2008, he just said he felt fine. We do compensate for his short-term memory with a daily clipboard and regularly talking about what is happening for that day. He has changed, but is not able to do any more than what he is doing. Next week we are trying to incorporate exercise at the gym, however.

The Knack, according to the authors, is a whole set of caregiving behaviors.

Caregivers who successfully learn the Best Friends model of care will develop knack, or the ability to do something easily, and will learn many tricks along the way. Knack for families is all about resilience, about surviving the disease, about providing good care, and about enjoying moments with the person. It is about the quality of life, for the person and his or her loved ones. It is about working through the pain. One door is closing and another is opening. pp. 101-102

They say elements of knack include: being well-informed, having empathy, respecting the basic rights of the person, maintaining caregiving integrity, employing finesse, knowing it is easier to get forgiveness than to get permission, using common sense, communicating skillfully, maintaining optimism, setting realistic expectations, using humor, employing spontaneity, maintaining patience, developing flexibility, staying focused, being nonjudgmental, valuing the moment, maintaining self-confidence, using cueing tied to the life story, taking care of oneself, and planning ahead.

Take the area of communicating skillfully. This means one idea at a time. No pronouns to referred to something or someone in the previous sentence.

                                                               

Take valuing the moment. I have been working all week and have things to do today, Saturday. He doesn't want to come today, and is content to stay home. So we went to dinner last night. He loved it. At dinner he told me he loves me, loves the restaurant and loves his dinner which he slowly ate. I told him that I loved being with him. I didn't have a smart phone to play with, I don't text, I was there for him. I praised the LORD in my heart for this great date knowing what may come down the road with Alzheimer's. I valued the moment.

I think it comes down to having "the knack" as we are in Scripture and growing in the fruit of the spirit mentioned in Galatians 5:

love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control

Self-control is really needed in Alzheimer's care. We can't always control the anger or moods of our loved one, but with God's help we can grow in self-control. Speaking of self-control, I am soon off to my 7 am Weight Watcher's meeting and then on to a Toastmaster training event.

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.