Third Book Report--Could It Be Dementia?

So far this is the only Christian book on dementia I have found, and it is fairly new--copyright 2008. It was published in the UK where caregivers are called "carers". The authors, Louis Morse and Roger Hitchings, both work for Pilgrim Homes in England and are used to dealing with dementia patients. They write from a Christian perspective and answered questions for me.

• Maybe we do need "Parish Nurses" to show how Christian do love each other(John 13:35). I am in the process of finding a support group or maybe starting one. "Looking after someone with dementia is not just time consuming--it is all-consuming. It drains your emotions, your energies and your finances." (p. 170)
• Loneliness is painful for people with dementia. Okay! That's why my husband loves for me to sit by his side while he watches old movies that bore me. Conversation doesn't always make sense to him, but he loves to be with me, go on errands with me. (He used to not like to go shopping with me before the dementia set in.)  
• I need to keep my husband as involved as is possible the authors suggest. I came home yesterday and he was preparing to mop the bathroom floors. I will let him finish that instead of doing it myself.
• My husband swears now when he is frustrated and while this bothers me, I read "The swearing is not because of a suppressed sinful desire--it is the disease. . . .Part of the impact of that terrible illness is this aberrant behaviour, and he has no control over it. It is not that he doesn't want to control it--it is beyond him." (p. 142) Fortunately he doesn't swear at me, just other drivers, or situations that frustrate him.
• "There needs to be less focus on their 'deficits', and more on their needs as human beings." (p.149) My husband is not a disease, but a wonderful human being with personality, likes and dislikes. The authors stress having photos and memorabilia around so that he is reminded of his likes and memories. He has photos of memories on his Facebook page and I am still trying to get him to respond to grandchildren who post on Facebook. I need to make his scrapbook soon!
• "Caregiver syndrome can lead to high blood pressure, diabetes and a compromised immune system." (p. 123) I need to take care of myself so I can take care of my husband. I guess I need a support system perhaps more than this blog.
• He asks me repeatedly "How was your day?" and I repeatedly tell him. I am afraid to ask him how his day was because he won't remember. "People with dementia still need to know that they are loved. They want the same kind of reassurance you would give a child--or anyone for that matter--a hug and a reminder that God loves them too." We often tell each other that we love each other and show it in other ways.
• "And sometimes, an individual who is not normally able to speak coherently will say the most beautiful Grace. One home manager said, 'Even when everything looks to the contrary, I am convinced that the Lord keeps His connection with us, through to the very end.'" (p. 118) Where once my husband initiated devotions and theological discussion, now I need to initiate Bible reading. Yep! He still prays wonderful prayers, as if he doesn't have dementia.

Second Book Report--Early Onset Blog Books

Five years ago Linda Fisher's husband died from Early Onset Alzheimer's. While my husband doesn't have that form of dementia, I learned a lot reading Linda's books, really a compilation of her blog. There is also a link to her blog here. When her late husband developed Early Onset, Linda began doing two things: 1) she became an advocate for more funding for the Alzheimer's Association; and 2) she began writing for therapy. Why she even wrote a book on therapeutic writing called Rocks and Pebbles and edited a book of true stores called  Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's.

She described her caregiver process as watching her husband Jim die one ability at a time--unlearning. How I identify. First in 2008 my husband wanted to get rid of his extensive theological library--we gave books away and also sold some. He lost interest in the computer (maybe he has been on his computer five or six times in the past year). No longer does he want to work in his workshop and he has sold a lot of his shop machinery to friends. He gardens, vacuums, cleans the carpet and watches TV now and really enjoys this retirement. Probably many women would be happy if their husbands did all of that and they knew where they were at all times like I do!

Linda noted that the caregiver learns a new level of love, not expecting reciprocation. However, every day my husband says he loves me and he trusts me to make decisions. Because others don't live with the problem day to day, they are not aware of his diminishing capacities and there will come a time when I will need to ask for help from others.This week we will celebrate ten years of marriage. I have in the last three years taken on new responsibilities such as finances--scary since we have less income than when we both worked full-time. He trusts me and the responsibility is overwhelming at times. He used to handle repairs and now I have to do that. Call the plumber he says and I have to figure out on his Outlook whom we use.  Every day I am conscious of his disabilities and my inabilities for the challenges.                                                

Linda writes in her second book: Some of us are survivors and expect to continue moving forward with our lives. Others feel like victims and expect more catastrophes in their future. (pp. 16, 17) Money can't buy love or good health, but the lack of it can make life tougher. Either accept the challenge to make it through the tough times and still enjoy life, or decide you can't and sink into despair. (p. 26) What is your caregiving goal? I will venture a guess that it is to take the best care you can of your loved one. You don't care about being the world's best caregiver, or plan on being a professional. Let's face it, when you become a caregiver, you can't spend years practicing before you know what you are doing. You learn to be quick, think on your feet and be creative. (p. 68)

Linda writes also in this second volume that life should never be in a holding pattern waiting for a season to change. Living life in dread of the next season, and what it may bring, can steal our joy. I believe joy delayed is joy lost. The important thing is to embrace today and celebrate the festivals of the current season. (p. 132)

Linda, thanks for publishing these two books taken from your blog. I feel like we had biscuits, gravy and coffee together (her favorite meal) and I feel like I have a new friend with your well-written books.

First Book Report--The Coconut Oil Miracle

Coconut oil has all kinds of benefits including helping fight dementia. With the right eating it can help weight loss as it promotes overall health.

Bruce Fife, author of The Coconut Oil Miracle, writes:

As I learned more about diet, health, and coconut oil, I realized I was eating the wrong kinds of oil. Instead of going on another diet, I replaced the processed vegetable oils I was eating with coconut oil. I used butter instead of margarine, I ate fewer sweets and more fiber. I didn't reduce the amount of food I was eating, and I probably ate more calories than I had before because I began eating more fat in the form of coconut oil.

A strange thing happened. I didn't expect it to happen, and I didn't even notice it until months later. My pants were becoming looser. . . .I was shocked because I wasn't dieting. I wasn't trying to lose weight, I was just trying to eat healthier.

I ran out of hair conditioner and tried coconut oil. However, it is like an oil treatment and then I washed it out with shampoo. Hubby doesn't have too much hair, so we don't worry about hair conditioner or oil treatments for him.

What It's Like to Have a Husband With Dementia

• He says, "Am I 92?" He is 72.
• He says, "Is it 2008?"
• He confuses the credit card and the debit card at the pump. No, sweetheart, we don't have a pin number for the gas credit card. Wish we could have used the debit card as we usually do but money is tight. Will pay off that gas card when the bill comes in, however, next month.
• Thinks the clicker to open his car will also open and close the garage door.
• Forgets what he had for dinner last night so I can serve the same thing several nights in a row.
• Forgets to eat lunch I have made him when I am gone. Once I came home and he had forgotten both breakfast and lunch--a concern because he is diabetic and also missed his two servings of coconut oil. Now I call him to see if he has had lunch/breakfast.
• Knows coconut oil helps him. Jokes that when he slips into bed he slides across the bed.
• Has no interest in books and little interest in his computer anymore. We have gotten rid of books and much of his shop equipment.
• Watches TV much of the time. Don't know how many times he has watched "Godfather" movies--all of them. I record the evening news on my iPod and watch it the next day or go in the bedroom to watch TV.
• He loves that I can write on a little notebook computer by his side while he watches TV movies that bore me.
• Long term habits are great. Does yard work and makes the bed. Will vacuum and clean the carpet, although sometimes the process is confusing to him.
• If I ask him to do something he will forget. What husband doesn't! I try to put things in writing or I will be a horrible nag. Even if it is in writing, I have to be patient.
• I put new procedures in writing. He uses the calendar and has a wrist watch with the days of the week and the date on it. Several days he has forgotten lunch which I had prepared for him on a plate in the refrigerator.  
• Loves Ms. Garmin, the car's navigational device. Have put in writing how to use it. Able to run errands when I am not home with that device.
• Still very loving and considerate. Loves accompanying me when I am out and about. He trusts me.

The future? There are many kinds of dementia, the worst being Alzheimer's. Being married to a husband with dementia, not diagnosed as Alzheimer's at this point,  is just a challenge on worst days and on many days livable. Will offspring get dementia? Will I get dementia? Will we be able to stay in our home? Will the new health care bill cover  medical bills in the future or bankrupt us in the near future?

We all just live day to day and place our future in God's hands. He has guided us in the past. To God be the glory in all things.

"Be Your Wife's Best Friend" Hubby Said

At my church the pastor went around the room and asked each husband what is the duty to a wife. Not knowing if my husband could come up with an answer, I wrote down a couple of ideas to show him. He didn't need my help. He said,

The husband's duty is to be his wife's best friend.

I could not have come up with a better idea,

 and he does love just being with me.

Short, Short Story

“The Old Grandfather and His Little Grandson” by Leo Tolstoy

     The grandfather had become very old. His legs would not carry him, his eyes could not see, his ears could not hear, and he was toothless. When he ate, bits of food sometimes dropped out of his mouth. His son and his son’s wife no longer allowed him to eat with them at the table. He had to eat his meals in the corner near the stove.

     One day they gave him his food in a bowl. He tried to move the bowl closer; it fell to the floor and broke. His daughter-in-law scolded him. She told him that he spoiled everything in the house and broke their dishes, and she said that from now on he would get his food in a wooden dish. The old man sighed and said nothing.

     A few days later, the old man’s son and his wife were sitting in their hut, resting and watching their little boy playing on the floor. They saw him putting together something out of small pieces of wood. His father asked him “What are you making, Misha?”
     The little grandson said, “I’m making a wooden bucket. When you and Mamma get old, I’ll feed you out of this wooden dish.”
     The young peasant and his wife looked at each other, and tears filled their eyes. They were ashamed because they had treated the old grandfather so meanly, and from that day they again let the old man eat with them at the table and took better care of him.

Do Not Go Gently

Famous lines from Dylan Thomas poem

Do not go gently into that good night. . . Rage, rage against the dying light.

I find my husband actively combating his dementia. He has a small notebook where we write down procedures such has how to use the three remote controls for TV, DVD and VCR, how to use the GNP unit, how to use the cell phone. He writes on the four switch light switch plate--garage, dining room, family room and kitchen. Signs have appeared on the recyclable bins. This minimizes his frustration.

Frustration does come, however. Yesterday he couldn't find his keys. We couldn't leave the house until he found them, even though we could have used my keys.

We did find them in time to leave. We had such an enjoyable day in Orlando. We had one event in the morning and then went to an outlet mall and Downtown Disney. The last of the big spenders since we are on a tight budget we enjoyed just shopping and seeing the crowds. We had lunch, bought a gift for a grandchild and then had hot cocoa. Unhurried the day. We stopped on the way home at Home Depot for bird feed and Publix for a few groceries.

Earlier in the week we did errands before my dental appointment. He enjoys being retired and I enjoy having my husband to pal around with! Whereas last summer trips of any sort of trip were stressful for him and he couldn't wait to get home, since coconut oil I find him "not going gently into the night."

Higher Memory Score Again

One thing I will never forget about 2009 is living with my husband's dementia, deciding to become the best wife/caregiver I can be under the circumstances,  and learning all I could about dementia. I chronicled this effort on this blog. Here is a summary of his memory tests which are the usual indicator of problems.

• In December of 2007 my husband scored 29/30. I suspected a problem, but the doctor didn’t.

• In December of 2008 he scored 22/30 and his doctor told him point blank he has dementia. Namenda and the Exelon patch were prescribed.  We don't know what kind of dementia he has, but he definitely has short-term memory and life is frustrating to him often.

• In June of 2009, by a comment someone made to me, I started researching coconut oil and how it can help people with dementia. Immediately I incorporated it into his diet.

• In September of 2009 he scored 23/30, going up a point!

• Yesterday, January 8, 2010 he scored 24/30, going up yet another point!

Coconut Oil New Year's Recipes

There is a Southern tradition to have greens and black-eyed peas on New Year's Day. During the war between the northern and southern states well over a hundred years ago, the Union officers would raid homes and take the food they wanted, so the story goes, and leave "worthless" food such black-eyed peas and collard greens. Since then a New Year's meal with black-eyed peas represents coins and the greens represent dollars--prosperity wished for the new year, and remembrance of that war.

So to all who read this blog, happy 2010 and here are my adapted recipes for January 1, 2011. I put coconut oil in the recipes.

Hoppin' Black-Eyes Peas

2 tablespoons coconut oil
1 cup chopped smoked ham
1 medium onion, chopped
24 oz. (2 containers) of Marjon Quick Cook Blackeye Peas
one 14 oz. can diced tomatoes with green chiles, undrained
one 15 oz. can whole corn kernels, undrained
one tablespoon of sugar

Saute ham and onion in coconut oil. Add other ingredients and cover, reducing heat. Cook at least 15 minutes, stirring occastionally. Serve over Garlic Baked Grits.

Garlic Baked Grits, adapted from JM

1 cup uncooked grits

2 eggs, slightly beaten

1/4 cup butter

1/4 cup coconut oil

6 oz. pasturized process cheese food with garlic, cubed

1 tablespoon Emeril's'Original Essence or dash of garlic salt
Cook grits in water according to package diections. Stir small amount of hot grits into eggs; add egg mixture to remainder of grits. Stir in butter, coconut oil, cheese and seasonng. Spoon mixture into a greased 2 quart casserole. Bake at 350 degrees for one hour.

Hot Wilted Greens adapted from www.seasonalchef.com/greens.htm

3 pieces of bacon

1 tablespoon coconut oil

1 tablespoon Emeril's Original Essence or one large clove garlic, minced

1 medium sweet red onion, chopped

3 tablespoons chicken broth or stock

2 tablespoons balsamic winegar

16 oz. washed mustard greens*

1/4 cup toasted almonds or pecans

Cook bacon until crispy. Remove and drain on paper towels. Crumble and reserve. Add coconut oil, seasoning and onions to bacon drippings and heat until onions are softened. Stir in chicken stock and vinegar. Add greens and mix, stir-frying until the leaves are coated. Cover and cook until the leaves are wilted. Top with crumbled bacon and chopped nuts.

*Note: you can use collards, arugula or endive instead of mustard greens. My husband doesn't like collards and I'm not quite used to them.

Fading Memories

• Names of family my husband will see this Christmas are hard for him to recall.
• A young lady in our church delivered her first born several weeks ago. That infant was being held nearby. My husband asked when the baby was due.
• He keeps accusing me of moving the laundry basket from the laundry room back to the bedroom before I have laundered the clothes. The real truth is that laundry basket fills up again.
• The first Christmas party we hosted when it came time for him to pray he mentioned "Thanksgiving". I wondered what the guests thought.
• He does try to compensate. For our neighborhood Christmas party I made him an index card with names of neighbors. He likes those index cards that keep him informed.
• Can he find the car when he goes on an errand by himself? When I asked him this, he said that he forgets to think about it when he parks the car and sometimes has to look around. Fortunately his SUV sticks out. About six months before he retired he had trouble finding his car after work and I was summoned by cell phone to help him.