Wednesday, March 28, 2012

Making Life Easier

A blog is sort of an obligation to an on-line community. It has surpised me how I have "met" people through this blog. I now pray for some of them on Fridays. They make my life easier because they contribute here. Maybe I make their life easier.

One of my raps says,
With blogs I can rail
Dialogue will soon fail.

When I started blogging, I thought that people would respond back--there would be dialogue. Sometimes there is dialogue and for that I am grateful. My last post seemed to be monologue--no dialogue came from it. Oh well!

So gingerly I am writing on what makes life easier for me, the caregiver. Simple solutions can make a big difference.
  • Daily checklists. Hubby depends on this list. What a challenge it is to get someone with Alzheimer's to put their false teeth in. I go though this many mornings with my husband:
"Please put your teeth in so you can have breakfast."
"I don't want breakfast."
"You have to eat breakfast with your morning pills."
"Because you vomit if you don't have food with your pills and you have to have your pills."
"I don't want you to have a heart attack while I am gone because you forgot your pills."

I have actually come home on occasion where no pills was swallowed, no breakfast eaten and no lunch consumed! Then there are the days when I come home and some of the pills have been swallowed, but not all of them. All in all, Alzheimer's is a hard pill to swallow, but solutionis do come.

Enter "Breakfast to Go" and the chipboard sheet on what is happening that day.
  • Simple breakfasts. I realize that my husband is still in stage one, but a big issue is breakfast for me. How do I get him to eat breakfast? When I first came upon coconut oil in the summer of 2009, coconut oil was put in oatmeal. No longer will my husband eat oatmeal and I had to figure out ways to put coconut oil in food. Now he gets a Breakfast to Go along with coconut oil fudge described in Dr. Newport's book.
  • Learning to pray always,  rejoice always and find the humor. Last night my husband humorously prayed that the LORD would help my memory 'cause he doesn't remember things as I do.
  • Discipline of MY time. Getting important things done. I will never be  June Cleaver from the old sitcom, but I can pray for wisdom to order my days.
  • Asking for help. I will need to do more of this and it hurts to ask for help.
What makes a big difference for you? Maybe you purchased something from the Alzheimer's Association catalogue. What has been an aha moment in your journey reading this blog or as a caregiver?

Saturday, March 24, 2012

Activities for Alzheimer's Patients

Kay Paggi at this article writes:

“I believe activities are crucial to well-being. In the past ten years, research has shown that activities play a large part in preventing the progression of dementia. We also know that socializing prevents loneliness, despair and suicidal thoughts.”
My husband can enjoy a lot of sedimentary activities. He does need a pillow to sit on however. We even have one in the car. He is happy as long as his butt doesn't hurt, but he complains a lot if his butt hurts. Walking up steps strains him and he walks slowly. About a month ago he sat in a department store while I shopped. We should have taken that car pillow in because he was verrrry angry at how long it took me to buy something that was on sale. I did think a lot about the purchase, because our funds are limited.

So here is a rundown of last week's activities, while four and a half days I worked.

Sundays are full of church activities. We have a worship service and then most of us eat the noon meal we bring at our small church. Once a month it is a shared meal where we all contribute, but the rest of the time we bring out own meals. Sunday afternoon we have a counseling class that I have to attend since I am working on a seminary counseling degree. DH sits in a comfortable chair during that class.

Monday we went to a church seniors group where we ate the lunch we brought and watched the movie, "Courageous". We have this event once a month and I don't substitute teach that day so we can attend that event. Sally and Jake also went, but Jake had trouble with the movie. He said to Sally later, "Why would they show a movie at our church where a daughter died?" They did not see the whole movie.

Tuesday morning my husband had a doctor's appointment. I will brought up our need to have a neurologist, as Dr. Raj is no longer in our insurance group. The doctor said a neurologist is not needed at this time. Also, my husband's numbers were very good, dispelling thoughts that coconut oil is not good for a heart patient. No need for a cardiologist for a stress test he also said.

Tuesday afternoon  through Friday I substituted in public schools. When I retired from teaching, I did not realize my husband would have two kinds of dementia.

Wednesday night we went to Toastmasters where he is often asked to give the invocation at the beginning of the evening. He kept alert the whole meeting and loves to accompany me wherever I think I need to go for my safety. He knows and likes the people in the group.

Friday night we ate out with Jake and Sally at Applebees. They have 2 for $20 meals and Sally and I shared the spinach dip and chips and my hubby and Jake shared the cheese appetizers before our entrĂ©es. Jake and DH had the small ice cream cups for dessert. Then we were invited over to their home for decaf and to see the progress they had made organizing their home.  I called Sally and complimented her today on all they had done. She usually works only one day a week, and Jake is more dependent upon her. Jake is more ambitious than my husband, however, and they can work on home projects together.

Saturday I taught the first half of a class for DUI offenders in Florida. I have been teaching these classes part-time for maybe eight years. Now hubby got dressed up a little so we could go to a movie and dinner. We end up seeing "1000 Words" when "Hunger Games" was sold outl He didn't like the "1000 Words" movie.

Unlike Jake, hubby is self-sufficient while I am gone, because of his check list. He is getting better at putting in his false teeth in the morning so that I can leave knowing he has had breakfast and had food with his pills. As I get into our car, he picks up the dog and the three of us critters say goodbye. The routine is expected by our dog and I often kiss both hubby and dog before I leave. When they hear the garage door open in the afternoon they both greet me at the door.

One of the problems of finding activities for my husband is that I have a lot to do myself. I have had to do gardening this week--someone has to do it. My husband doesn't seem to be motivated to do things. Sometimes my husband will do things with me, and yet many times he is content to just let me do things. Sally and I have discussed how we married men who used to do a lot more, and now it is on our shoulders. I need to learn to use the riding mower, but so far my husband (or thoughtful neighbors) mows our 3/4 of an acre.

Increasingly my husband likes less noise and a simple pace of life. Sure I would like  him to go to senior center or do crossword puzzles. Sally and I think that if both of our husbands go to a senior center together it would work, but we haven't tested this hypothesis yet. Hubby is happy and has many options for watching TV--videos, DVDs and cable TV. He also socializes very easily with people.

We always take turns praying at night before we go to sleep. Hubby prays when the date is odd, and I pray when it is even. As I have noted before, I always love his prayers and the fact the LORD is watching our Alzheimer's journey.

Friday, March 16, 2012

Safety and Guns

An Alzheimer's patient is like a child. We need to protect them--protect them from wandering, protect them from weapons. This morning I read this poem and got permission to post it.

It's Time to Heed the Headlines
A plea to gun-toting parents
by Greg Asimakoupoulos
March 16, 2012

If you love your daughters and your sons,
you can't be careless with your guns.
A weapon left in easy reach
can be the death of them.
The tragic news we've read about
should undermine whatever doubt
may yet remain concerning what's
the loving thing to do.

A grownup gun is not a toy.
And little girls and little boys
can't differentiate what's what
except when it's too late.

So please lock up the guns you own
before you hear your child moan
while bleeding out before your eyes
that can't hold back the tears.

Originally published at .  Used by permission.

Tuesday, March 13, 2012

Staying Afloat Book Quotes

Sally and I share books to read. She loaned me this easy to read book which contains so many helpful tips.

Gary Leblanc in Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving, Expanded Edition, 2011
It is diffucult to recap the whole book, but here ten of my favorite quotes or strategies, often echoed by other authors on caregiving. Tried and true methods.
  1. " I've always believed Alzheimer's patients feed off their caregiver's emotions. The smoother the household runs, the easier it will be to keep up a positive, calm demeanor. Even so, there'll always be moments when everything feels like it's falling apart." (p. 158) Usually that is sundown time as I wrote in the previous post.
  2. "It's easier for patients to refuse than to allow themselves to look foolish. Get into the habit of redirecting your patient's thoughts, preferably to more blithesome ones." (p. 161) Often 30 minutes later there is a different answer.         
  3. "One positive aspect of having no short-term memory is that a couple of minutes down the road, they won't even remember being upset." (p. 161) Yep! Corollary to the above.
  4. "There will be times when it doesn't matter what you say or do. Never force an issue to the point of argument, just let the dust die down and try again later." (p. 168) Go with an obsession when it is safe to do even if it is inconvenient. They say never argue with an Alzheimer's patient. At times you can divert their attention and give them ice cream or anything that works.
  5. "One treatment that I've discovered that takes the edge off the anxiety of Alzheimer's patients is a loveable pet." (p. 256) We have an adoreable Maltese that we both enjoy.
  6. "If they're speaking and not making any sense, just go with the flow. Gradually, try changing the subject if it's too bothersome for you. You're doing the right thing by being there. People are nurtured through human contact, even if they don't always show it. Every minute you're there is worshiped. Recently, someone shared a story with me of a man who goes to his wife's nursing home and has breafast with her every day. She hasn't recognized him in the past five years, but what's important to him is that he knows who she is. Tough love isn't about surviving the storm, it's about learning to dance in the rain." (p. 272) Dolores has this last quote on her blog. Her hubby no longer recognizes her.
  7. "I believe that one of the most important elements in longevity is the quality of care loved ones receive while suffering from this disease. Once again, this is where a routine lifestyle becomes so essential." (p. 282) Still working on the routine of putting in false teeth the first thing in the morning. Other routines are established, including a clipboard of what's happening.
  8. Their best time is from 10 AM to 3 PM. Oh yes. When I am gone I call to just tell my husband hi and sometimes to remind him about lunch.
  9. When sleep patterns change, then wandering can happen according to LeBlanc. Have started to give DH 3 mg of Melaton because one night he got up to watch TV. Lately he is sleeping well with those 3 mg. Will go to 6 mg if needed.
  10. The best tip is the characteristics of a successful Alzheimer's caregiver from pages 11-14. With prayer and meditation on Scripture I aspire to these five characteristics.
a. Commitment is defined as "faithful dedication to the cause of the patient until his or her final breath."
b. Compassion LeBlanc defines as "concern toward the suffering and understanding the feelings of the patient and the family members".  
c. Endurance he says is "withstanding painful long years of misery in defense of the victim and caregiver of this dreadful disease."
d. Unselfishness means "generosity of putting your life on hold, including social isolation and financial burdens."
e. Honesty is "loyalty toward and the protection of the afflicted one's assets and best interest." 

Lord, thank You for your daily mercies. 
Help me to be the best caregiver I can be. In Jesus' name, Amen.   

Sunday, March 11, 2012

Sundowning and Obsessions

I have been noticing that about Sundown time we run into snags here. When life isn't comfortable or is confusing, DH gets agitated. Jake does also.

Friday night we went out to dinner with Sally and Jake. The four of us were at a round table and Jake was concerned we weren't sitting correctly at the table. Sally was sitting closer to me so we could chat. Jake was obsessed with how we sat. Jake wouldn't let his obsession go until we had squared off the whole table. Jake went up to pay their bill and I went up to pay our bill. Sally meanwhile at the round table asked my husband if he was upset about not driving anymore like Jake. He told her that he knew it was best he didn't drive anymore. Jake and DH have different obsessions.

One sundowning episode when DH didn't like the restaurant, he said to me, If you take me here again, I will divorce you and If you take me here again I will shoot you. I know it is the disease and sundowntime that I have written about earlier on this blog. I bought this up days later and DH says he was just teasing or that maybe I was making things up. They are in a different world at sundown--an Alzheimer's world.

I worked six days last week. When I got home on Saturday, it was my husband's time to obsess--late afternoon. I told him that while I taught, I had the car's oil changed. I reported to him that the mechanic had actually found the source of the oil leak, thinking that he would be glad to know this news. Not so.

"So why didn't you get it fixed?" he wanted to know.

"Because I only found out about the location of the leak when the mechanic picked me up," was my reply. It soon became clear to me that hubby wasn't processing this information and he decided late afternoon of a Saturday that we needed to go out to get the car fixed. Even though I was tired and wanted to stay home, we left on an adventure. With obsessions, you just have to see where the Alzheimer's spouse is taking you. An obsessed person doesn't think about making a phone call to get the appointment. DH apparently needed to get out of the house.

The garage door closer that is kept in our car needed a battery and DH has been closing it with a switch in the garage when I left all week. Confusing to DH now. On our trip to find a late Saturday car repair I said to hubby: "I will drive the car out of the garage and pick you up at the front door." This didn't make sense to him as he kept forgetting that he couldn't get in the car with me and that I couldn't use the garage door closer in the car to close the door. He was mad. It was confusing.

Now our Plant City Firestone has shut down and we drove to nearby Sefner for their Firestone--our new mechanics to keep our Expedition running. On the way there, DH forgot, of course,  where we were going. When we got to our new mechanics, I arranged for an appointment for next week. Then we went on to Wal-Mart to get several items including the small battery for the garage door opener and to have DH's watch set ahead an hour.

I reflect that this stage of Alzheimer's is much like Autism. Individuals with both diseases have short-term memory problems and tend to obsess about issues. In both situations distraction and reminders help. So by the time we got to Firestone, the obsessive purpose for the trip was no longer an issue. Hubby was distracted by the enjoyable ride in the country past strawberry fields and farm houses, remarking that he doesn't get out much and doesn't remember the road we were traveling on. He also remarked that it is good that he doesn't drive anymore.

Rather than get upset, I, the caregiver, just go with the flow. I just need to enjoy my days with hubby and find the humor. The other night when DH was praying, he told the LORD that whatever that thought was that he had, the LORD knew. The LORD does know all about our Alzheimer's journey, the obsessions and all. Thank you, LORD!

Tuesday, March 6, 2012

Still Stage One--What It's Like

Every person with dementia adapts to memory problems in different ways. Not sure what the stages of dementia are precisely (there are many descriptions of stages and many kinds of dementia), but I thought about our communication prompted by the Alzheimer's Reading Room (link at right).

We use a clipboard where I have typed the daily schedule. My husband has to check off things on it (take the dog out, have breakfast WITH pills, ask Carol if she had her pills, has she fed the dog) and it lists where I am substitute teaching or teaching a class for DUI offenders, when I will be home and what we are doing in the evening. This strategy has helped both of us--me because DH doesn't repeat questions often. Originally this clipboard list was his idea. He even likes this typed schedule when I am home all day.

Some TV news shows keep running the same news. He doesn't get it the first time and the news is repeated. I just can't keep watching the same thing over and over--but he can. I am around the corner in the den usually. He will say to me, "Carol, are you still kicking and breathing?"
I also call him when I get someplace to say I have safely arrived. Increasingly he is "shadowing" me. He wants to know where I am at all times because of that short-term memory and because this gives him security in a world that is becoming confusing to him.
Do our means of communication always work? No. I call him and remind him to have lunch, even though this is on this clipboard. It is the same lunch he is used to: a plate in the refrigerator with a bagged sandwich, yogurt and coconut oil fudge. Yesterday I called him twice during the day to remind him of his lunch. When I got home, he had not eaten his lunch and was hungry for dinner. He says teasingly, “I have been a bad boy. Am I going to get a whipping?”
I just smile at him and proceed making dinner.  In the evening DH will often say, "I think I asked you this before, but how was your day?” Calmly three or four times I tell him the answer to that question. My communication includes one thought at a time or he will tell me point blank I am not making sense.
Often he will not remember what he has decided (let’s go home and not eat at church, for example) and then later when he is comfortable he will say something different that shows he is enjoying his time at church with people he has known for over twenty years. Sunday afternoon he sweetly told of his love for me to others. Sigh!
Living with a husband with dementia, I have been forced to learn patience and other communication skills and prepare for future changes in our ability to communicate with each other. Yes that routine pays off usually, but we have left the house without his false teeth, or with his forgetting to shave. I have been forced to check-up on those routines.
What we do communicate is that we love each other. Like all couples in a happy marriage we have those rituals that show we love each other. What a privilege it is to be his wife/caregiver!

Saturday, March 3, 2012

Adrenal Fatigue, Google and the Doctor

Ah, doctor. Google begs to differ!

We are hoping that future generations will not have to deal with Alzheimer's as more information comes to light. The Alzheimer's Reading Room and other sites hold promise for unlocking the mysteries of Alzhreimers.  You can google these discoveries. Tell your doctor about them. I told my husband's doctor about the coconut oil and so far he is not concerned about the extra fat in coconut oil.

When I went to my doctor this week, she was so pleased with my weight loss. P.B. was 122/80 for this 67 year old. Just exercise more, Carol. Today's exercise is gardening--which needs to be done. Hubby didn't want me to go to the gym when we were out this morning.

7 AM today I went to my weekly Weight Watchers meeting where I made a benchmark goal and got to walk the red carpet. I learned what a "Jolie" is as the leader encouraged me to do that on my red carpet walk. When I substituted this week, a student at a middle school where I sub often asked if I had lost weight and I said yes. The class clapped for me.
A few evenings ago,  DH, Sally and Jake and I attended a health workshop at their church. The presenter shared this quote.

75% of the disease prevalent in western society
today are . . . related to the stress mechanisms
of the body. The Standard, Vol., 3, No. 1
I asked questions at the end of the presentation. The doctor agreed that over-dependence on meds and preservatives in our foods can trigger a whole lot of other problems down the road. It is so easy for doctors to just prescribe pills. So I did some Google research on the topic of Adrenal Fatigue.  In turns out that you can have saliva tests to determine your cortisol/DHEA levels during the morning, afternoon, evening and at night.  It is possible to test your cortisol levels and then use a compounding pharmacy to have just the right mimimum prescription for your needs. This way you don't overmedicate.

Without adequate cortisol levels the sleep/rest and recovery cycle is not restored.  We sleep well and restore our CORTISOL levels in the first  hours of the night, and then need four more hours to restore the rest of our functions. Here are two of my Google finds:

Adrenal Fatique in Women
Another DHEA

"One of the main goals of every caregiver should be finding a way to have enough rest. Everything depends on it," writes Gary Leblanc in Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving, Expanded Edition (p. 110)

Here's to a good night sleep, you all!