New Normal in Caregiving Is Hard

This link Seven Stages from The Alzheimer's Reading Room describes the "new normal" stage that my husband is slinking into--perhaps stage five of seven. Every care receiver is different. My husband is no exception. He is different from other sufferers, but like them is trying to feel normal even as he:

• Struggles to express himself with the correct words. I have to
  
  stop my busy pace and concentrate on what he may be trying to say. 
• Wants to say "no" instead of "yes". I am so glad for the good routines established that keep things as "normal" as they can be. Taking morning pills with Kenny is a routine that works. Taking evening pills with me at 8 pm is a routine that works. Waking hubby up at 4 am for a pain pill works, in that I put it in his mouth and he slightly raises his head to swallow water and then goes back to sleep. 
• Has diminished taste buds and interest in food. Consequently I try to find what food will work for him. Fortunately I can give him coconut oil with that dark chocolate. 
• Has less knowledge of time.
• Lights up when I come home.

In contrast I, the caregiver/lovegiver for my husband:

• Struggle to say the right words to my husband without appearing to nag, without giving too much information in what I say. It is quite a discipline to say one thought at a time. 
• Have to say "yes" to more responsibility and yet am simplifying and saying "no" to perfectionism and expectations.
• Have more knowledge of time, trying to multitask, and yet fearing caregiver burnout.
• Light up when I see him, yet do not feel "at home" at our home. Frankly, when I am teaching I feel more normal--I work for respite perhaps and also income. 

My new normal includes writing a dissertation in my "spare" time which often is while substitute teaching in good classes or early in the morning while hubby is sleeping. Currently I am writing the chapter on stress and depression and fighting both stress and depression personally. Time to book an appointment with the counselor. Time for prayer and meditating on God's Word. 

Graphics from Pinterest. 

Going Downhill: What Husband's Dementia Now Means

I wrote on June 5, 2013 HERE.  Before that, July 3, 2012 I reflected HERE. These posts and recent observations show clearly that hubby is going downhill.

Bird house was last project. 

The last thing I recall my husband building, was a bird feeding station that he carefully fixed on a pole that used to house a DirectWay TV dish that pointed south. We changed to cable and we did not need that stand cemented into the ground. Hubby came up with the birdhouse solution. This project was in the earlier stages of dementia and I did note how he seemed confused figuring out some of it. Somehow he has wanted to maintain his equipment in the workshop, and carpenters since then have remarked at how organized this workshop is. I laugh, because I have cluttered up that workshop with items we used to take camping and other junk to go in a yard sale. I long to make this workshop an exercise room and use it for my storage and even Pharis has offered to transform that room.  It's as if I do not want to let my husband's workshop go.  I want that workshop to continue as a carpenter's workshop even as I want my husband to continue to be the same.

But now hubby is going downhill.

How does this make me feel? It is very hard. Thursday night I reclined on our long couch in the den by my husband who was sitting in his spot watching TV. I was occupied by depressing thoughts and trying to pray.

Lord, I do not want things to change. I want arthritis to be the only thing wrong with hubby now. I want that new pill to fix the arthritis and I want him to walk even if it is with the walker. I want my mellow husband back. I feel guilty now going to the store without hubby who has wanted to accompany me everywhere.  The whole dynamics of our marriage is changing in that I have had "the better" and now have "the worse" of those marriage vows.  But, LORD, it is not all about me. I accept that you are using this situation for my sanctification and thank you for so many who have come along side of us. 

I wondered reclining on the couch if I needed an anti-depressant. Then Kenny and his brother-in-law came over. I got up from the couch to greet them. They were over borrowing tools from hubby's workshop. They needed tools to fix a car, but unfortunately hubby didn't have those tools as my husband's hobby had been carpentry, not auto-mechanics.

"What's wrong?" Kenny asked. "I usually see you upbeat."

"He's not getting up to walk and I am afraid of all that is coming." Kenny and Kevin promised to pray.

What do do about dinner Thursday night.  I started it, but hubby wanted to go out, forgetting his limitations. He hobbles to the bedroom to change from his jeans shorts and T-shirt into slacks and a nice shirt. This outing however would not be easy. I packed the 8 PM pain pill in my purse.

Usually hubby would interact with the waitress, but not Thursday night. The walker we took to the restaurant was stored elsewhere and I went to get it when we went to leave. "I don't need that!" But yes he did and does. He has memory of walking, but is in denial about his current limitations.

"Use it or lose it," you hear about walking and artritis. I took the urinal away from him on Friday thinking that going to the bathroom would encourage walking. However, Friday night he wanted that urinal rather than walk to the bathroom and I came to observe that he had peed in his jeans during the day. Slowly he changed out of them as he got ready for bed. I have been helping him and notice all I have to do now that he did over a month ago.

1. I retire his false teeth to be soaked over night. In the morning I get his full uppers and partial lower false teeth for him along with new Seabond that keeps the uppers in place. 
2. Taking meds is a battle of the will. Kenny said that Friday morning after I had left the house to substitute teach, it was an effort to get hubby to take pills. He was stubborn for me last night as well. 
3. Shaving and showering is done with Kenny's help.
4. Dog Ziggy "needs" a ride in the wheel chair--translation hubby doesn't want to use the walker. 
5. He has a worried look on his face, reminiscent of my father and uncle as they aged.  These two relatives did not have dementia, but did have that worried look.  Kenny thinks that my husband's eyes look different.
6. Hubby doesn't answer phones now in the last several days. Friday morning when I got to school and called, Kenny answered the phone and gave the receiver to my husband. 

Yes coconut oil, and Alzheimer's meds have delayed the inevitable. Yes I have been a Pollyanna. It is here, folks, what I interviewed Dolores, LaTane and Laurie about. What I have read in Linda 

Born's book and Linda Fisher's book and other books. What I have heard in the Alzheimer's Association Support Meetings.  Ready or not, here IT comes--the very difficult days of being an Alzheimer's caregiver. 

Friday I finished reading a novel, Crazy Lady by Jane Leslie Conly, to the special education students I have been substituting for this past month. In that novel middle school student character Vernon has to let go to a special needs young neighbor, Ronald, whom he had been mentoring. Vernon experienced anger at Maxine, Ronald's alcoholic mother, and grief when Ronald was carted off to live with relatives in another state. Vernon had done so much for Ronald--sponsored him in The Special Olympics and told others about Ronald saying his first word. Vernon ran alongside the car that carted Ronald off with Ronald looking back in the window. Finally the car sped off and Vernon falls, rolls and hits concrete:

I tried to speak, but nothing came out. I hurt all over. A hand moved up my legs and back, feeling for broken bones. It moved around my neck and rested on my face. It smelled familiar. "Vernon," Daddy said. "I'm here." (p. 180)

My students and I had quite a discussion on all the emotions of Vernon went through in the book. I know that my Father in heaven is there for me now, but I hurt all over emotionally. I must blog whether anyone reads this or not.

This Saturday morning hubby asks me what street we live on. Every time I cough he asks me if I am okay. He is sad he says today. He says he misses Jake and Sally who have been out of town. I miss them also. His son calls from Virginia and I talk with him about the deterioration which is evident to the son after he talks with his dad. Hubby takes forever to do anything. I edit his pills--no vitamins and fish oil--but other essentials have not been taken. He waits in his wheel chair watching TV for over an hour, not sure when he will sit in his padded spot. After some time the spot calls to him and he makes it there when I am in the den blogging.

As I am writing this post Kenny comes over for the ritual shaving and shower. Hubby is resistant to the shower, but we manage. Thank you LORD, for Kenny and the prayers of you all who read this.

Added Sunday, Sept. 29: It's official. I am only allowed one day at the PITY PARTY according to Jean Milsap, 20 year caregiver whom I interviewed in July here. So be it! The lady has spoken! 

It Takes a Village, Part Three

Plant City Barber

During the hospitalization of my husband and his recovery from the UTI, I got many wonderful suggestions from near and far. Basically, however, no one is in my shoes, living with my husband day after day, realizing his limitations, my time limitations and our finances. I am the decision-maker, the health care surrogate. No one realizes how stubbornness comes out in an Alzheimer's patient, who cannot be rushed to do anything--take pills, shave, take a shower, or get ready to leave the house. I actually have to combine patience with cunning.

However, last night nothing worked and I left the house and went to Sally and Jake's house. I felt like I was being bullied and ready for step two in the previous post. Let me explain.

Hubby's beard grew with his hospitalization. Last Thursday I stopped by his barber in Plant City and asked if the barber could not only give my husband a hair cut, but also a shave since the razor wasn't working so well with more growth of facial and chin hair. My husband didn't like the electric razor I got him for Christmas. We hadn't decided that he would become Santa, so we needed a solution.

"Get him a trimmer," the barber said on Thursday. "You can buy it at Sally's Beauty Supply." He wrote down three kinds I could get. He showed me how he maintains these trimmers with a tooth brush and oil. He explained that the trimmer can be used on the few hairs at the top of his head that just stick up. He can just go bald there. The trimmer will give him a "day old" beard look popular with movie stars. Why we even have a Sally's in our small town. They had one of the ones he recommended--an Andis Styleliner II. I bought it and last night was to be the trial run with a three-day beard my hubby had let grow since Saturday.

 Southern



Now I have also been studying my meat and potato hubby. I also know he likes barbecue sandwiches, and the chicken salad or meat and cheese sandwiches I have been making him lately just aren't cutting it. I stopped by First Choice BBQ and got him some meat fit for a Southerner's sandwiches--pulled pork. It works like a charm. Kenny heats it while I am gone.

To also thank this wonderful community, I have to say that with not a lot of time on my hands a shower chair was acquired at an estate sale last Saturday--just what I had been looking for and we have the large shower for it. We are on our way to solutions. Only my hubby wanted nothing to do with old people's stuff. No shower chair for him when he showered Sunday morning. But I am prepared.

Sunday hubby waited until the last minute to take that shower and wasn't ready for church which now meets at 2 PM. I left for church, and really was sad that hubby wasn't by my side at church. However, Kenny was home from his church and was able to check on my husband and heat up some BBQ for him while I was away.



Back to my leaving the house last night. Hubby was angry I tried to use this trimmer that the barber had successfully used on him three days ago. Do I have to go to the barber ever time for his shave? He doesn't remember the barber.

Last night hubby also wouldn't shave with his razor. I was at wit's end when I got to Sally and Jake's house. I held back tears, but I am sure I sounded frustrated and angry. "He doesn't want me to use the trimmer on him, and he won't shave so I left the house," I explained to our friends on their back porch.

I texted Kenny I was leaving and he texted me, "Are you okay?" Then Kenny called me and said I did the right thing by leaving.

Last night I was bearing my soul, confessing my anger at the situation to Sally in person and to Kenny on the phone. Sally prayed with me. Jake got on the phone, called hubby and worked out a deal. Hubby would shave with his razor and the four of us would go out to dinner. Then Jake started shaving himself with his electric razor--that is after Sally told him where it was.

Was hubby ready? A deal had been brokered. I drove Sally and Jake to our house and parked in the circular driveway and Jake went to the door. Hubby had shaved and put on a clean shirt--well actually a clean shirt over the T-shirt he had worn all day. The four of us would go to dinner.

As usual we wives order for our husbands as they can't decide these days. BBQ for hubby and a grilled chicken salad for me. However hubby does ask for a certain adult beverage. Grandpa Johnsons's Restaurant didn't have a Scotch and Water so hubby settled for his iced tea.

At dinner I let a few sinful barbs fly about shaving--just wanted hubby to feel my pain, although today he will have forgotten all about shaving. No solutions yet, other than the nagging wife showing her pain and sin. There are no solutions for dementia eventually. Why am I hitting my head against a brick wall?

I do still like living in Plant City, my village of people. Waiting still to use my new skill the barber showed me. I am open for business, folks!

Joy and Stress in Caregiving




http://bitsotruth.blogspot.ca/2012/08/02500.html

Ginger is a mom of many (natural and adolpted) that I interviewed several years ago for the class I taught on counseling children. I had emailed her asking for the link to "Are You a Good Person?" that she has on her blog, Clark Chatter here. From Ginger's busy life she thoughtfully wrote back today:

I'm praying that you will continue to find joy not only in loving your husband, but in serving the Lord through your service to the man you love.

Thanks, Ginger! I count on those prayers.  I didn't get the fancy widget, and I tried, but I did put it in the links below.

This reminded me of my husband's prayer here that the LORD would give me a shot of joy.

It also reminded me of the post I put together on 15 things a caregiver can do to be joyful here. That post has had nearly 500 views to date. People need joy.

Yet it is no small thing to have joy in caregiving. After all it is indeed stressful especially when it is your loved one. You become like a parent raising a very difficult child, with one difference: this adult child will never grow up, but will deteriorate and the demands will increase. Hence stress.

 

My cousin Nanci Alcorn and her husband prolific author Randy Alcorn have just released the 2013 edition of Women Under Stress and they send me a copy. You can order it here  from Randy Alcorn's blog. I read their 1986 edition at a time in my life that indeed had been very stressful. I know Nanci has been a caregiver for her parents, my dear aunt and uncle, as well as for her mother-in-law early in her marriage to Randy. Nanci's own daughter went through a huge medical crisis last year. The Alcorns do indeed know about dealing with stress.

I began to read the new edition yesterday while I was substitute teaching. I had been trying to up my production here going through The House That Cleans Itself and often feeling inadequate and wondering if you all in the blogosphere are wondering when I will get the next area finished. Then in Women Under Stress I took the test. Folks, I am not Type A person, but am between Type A and Type B. This is encouraging to me. I do not have to be that driven woman and maybe am not slated for that heart attack any time soon. The Alcorns write:

Type B's are mellower, low-key, less driven, unhurried, more patient with others, and generally have less to prove than type A's. Not only can they take a vacation, they can have a great time on it. Type B's enjoy life more, and have more time for people. B's tend to be people-oriented, while A's focus on the products. (p. 28)

Today I stayed home and gardened and made pizza. My hubby smiled when I told him my joy with being his wife the homemaker gardening and making pizza.

I reflect that at first when my husband was diagnosed with dementia, I was depressed and didn't talk with him about it. We tended to not have the best connection then and probably the world didn't make sense to him. I remember when six months after the diagnosis he was very confused about retiring from his work and I was beside myself trying to wonder how the finances would work out. I guess you might say I was angry with God. But that has changed now as this stress is being transformed by my faith.

Time does not heal all wounds. Time alone will only allow the cancer of bitterness to grow. When we refuse to cater to our emotions and refuse to indulge our fatal tendency toward bitterness, only then will time bring healing. . . . There is no sin Christ didn't die for, no sin He cannot forgive, and therefore no sin that we, in His strength, cannot forgive. (p. 80)

Yes, as Randy points out, depression can come, but our LORD can transform it. Hope and heaven are around the corner. Joy is every day.

Stress, you do not own me. Joy does.  

Today

I want to talk about the plants I repotted

and the pizza I made

and JOY.

Senior Citizen Complains About Technological Change

They already know my name, why do they need my email password?

Invalid username and/or password. Please enter your email password, not your LinkedIn account password.

So I get a notice that I didn't respond to _______'s request on LinkedIn six days ago. It looks like in the above picture there are 26 other things I missed. So LinkedIn will let me respond to her if I give them my email password. Are you kidding! Then they can spam all my email friends!  Let's see where this LinkedIn complaint goes. The most popular post on Plant City Lady and Friends with 2515 this morning is my complaint about an ad for "Brain Health and Memory Kit " here, LinkedIn--are you listening?  

It is so complicated these days. You almost need a chart for:

• Friends who only do Facebook
• Friends who only do Facebook games
• Friends who do Facebook chat and messaging only
• Friends who tweet on Twitter (I certainly do not)
• Friends who only text
• Friends who only do email
• Friends who say they do not read blogs after you spend time on a post and wonder if you should just do the extra step of copying it for them and putting it in an e-mail
• Friends who say just call but their message line is full because they don't return calls
• Friends who have several phone numbers and you forget which one to use
• Friends with a combination of the above
• Friends who don't understand how difficult it is to talk on the phone with the Alzheimer's hubby present and why blogging and texting is cool for me

I can hear the music in my head.  "Who ya gonna call?" and the answer in the old film is "Ghostbusters". But now it is how do I contact someone? Can't you just come over and chat on the front porch?

I do need prayer today with specific requests and for

the really difficult journey of caregivng for an Alzheimer’s husband.

And there are specific things you can do for us. 

   

Carol

For Dolores, Special Plant City Friend from Texas

My blogging friend from Texas who has written on Plant City Lady and Friends, is going through rough times now with her David in a nursing home and not recognizing her. She is lonely.

I have been a widow and grieve with her as she begins the process of grieving while her husband is still alive. She likes large letters so here is what I wrote in a comment on her blog and am reposting here:

Dolores,

Your blog is such good therapy for you and for all of us grieving with you. "Bear one another's burdens," the Scripture says.

I reflect on my grief with my late husband's death twenty some years ago. It was so hard and a counselor helped me through. "Why are you so anxious to replace your husband?" he once asked me when I started dating another widower only four months after my late husband's death. I did heal and learn. It took eight years to remarry a godly, attentive husband, who is still godly and attentive despite his Alhzeimer's.


One session those many years ago, after working through much grief, the counselor said to me, "Get up each morning and pretend you are happy." Pretend? I'm thinking, but I didn't feel happy. Crying out to God and emersing myself in Scripture I did get through that stage and the years to follow. I repainted rooms in the house and forged a new life without a husband. I learned to live singlely.

Years later when the Alzheimer's diagnosis came to my current husband, I thought about the hard times of facing widowhood again.

Enter one lovely DOLORES who taught me to treasure every day with my husband with your comments on my blog. I do treasure every day now, as I pray earnestly for you to be given a "spot of joy" (husband's recent term) each day.

I am so grately for you and your blog, dear Internet blogging friend. I am one of the WHYS for what you are going through.

Hugs and prayers,


Carol

Our Separate Vacations

Even before the Alzheimer's invaded our marriage we never had separate vacations. Of course there were times when hubby was in the hospital, but one can hardly call that separation a vacation. Enter respite time, breaks for caregivers. See article  here  which points out that in a survey 80% of caregivers say respite time is the number one need of caregivers. Because of the generosity of family, I had the opportunity to have respite time apart from my Alzheimer's husband.

June 22. My husband flew by himself to another area to be met by his son for a visit through July 1^st. DH’s cell phone is off and I call that home. I realize that he had already thought I was on the cruise, but it would be one and a half days until I depart. He calls back, we talk, and I take a shower. I get three calls on my cell during that shower asking "How do you open this suitcase?" I could not get through to him after that shower. I presume that he walks up two flights of steps to get his son to help him with the code to open the suitcase.

.
June 23, the next morning, I am awakened by my husband's call at 5 AM. He misses me! Did he get any sleep at all? My sister-in-law comes to Plant City and we go to Ikea in Tampa. I get a $20 on sale backpack to use as my purse when we leave the ship. Backpacks are so handy for travel and this one is a favorite color--bright pink.

June 24 hubby and I talk in the morning. My sister-in-law and I leave for Port Canaveral for a week Caribbean cruise on the Freedom of the Sea, luxury ship owned by Royal Caribbean Cruise lines. Hubby and I later talk before the ship embarks.

THERE WILL BE NO MORE CONTACT UNTIL JULY 1ST. Will he remember to wear his ties to church both Sundays? Will he forget and wear the same clothes repeatedly. Will he remember to use the plastic bag I packed for his laundry and will that laundry bag return home in his suitcase? ABOVE ALL AND MOST IMPORTANTLY WILL HE TAKE HIS PILLS TWICE A DAY? I have to leave all those cares behind. I am not paying for Internet/cell phone access on the trip. He cannot contact me about things like his suitcase.

We set sail and travel all night and the next day. I celebrate my 68th birthday with my sister-in-law Monday night, a dress formal night. We meet our lovely 5:30 PM group in the dining room; these wonderful people we will see every night if they can make it. 

From Wikipedia

     • Tuesday we were in fabulous Labadee, Haiti
     • Wednesday we were in Jamaica and got stranded when the motor to our glass bottom boat breaks.   Shortly we were rescued by another ship. "No problem", just a situation, is the Jamaican attitude.
     • Thursday we visit Grand Cayman island.
     • Friday we debark at Cozumel, Mexico.
     • Saturday is another day at sea with so much fun before we arrive back one on July 1st.

I met people in countries and on the ship to pray for. With some of them I prayed right there on the spot. God is not limited by distance. My husband was in the LORD's hands that week; his son had legal and medical documents and authority. There are other concerns in our world than a husband who has Alzheimer's and Vascular Dementia and I was able to see poverty first hand, especially in Jamaica. I know that in Mexico and Haiti there are areas beyond the tourist sections we saw. I left a pile of clothes including my fancy dinner outfit ($15 at the Goodwill) for my cabin steward that she will bring back to Jamaica and prayed with her about her daughter. You know, though, many in these poor countries may be more spiritually atuned than we in the states are.

I brought too much with me, but left some on the ship.

July 1st we carted our luggage early to customs and maybe two hours later at about 9:30 we arrived at my Plant City home. My sister-in-law left for another vacation with her family and she got home about 9:15--actually 8:15 in her time zone Sunday night. I was in time for my church--maybe ten minutes late, and I enjoyed sweet worship. I was a little sad that my husband didn't sit by my side in his usual seat at church, but his plane was scheduled to land in Tampa Sunday night.

Back home from church, my digital camera has over 130 gorgeous photos to download. E-mail at home was way over 500, including Facebook's notice that I had family and friends postings to check up on. In our house there was no water and no home phone. "No problem", just a situation. The mail will be delivered Monday.

I left to pick up my husband at the airport, receiving a message from his son that he was indeed on the plane. Excitedly, I waited to see him. When he arrived as one of the last passengers to walk up a ramp, we hug and kiss. Hubby doesn't have his shaving kit and suit jacket. A flight attendant from US Airways brings his shaving kit out to us after I ask. No jacket she says--oh well--that was a $10 Salvation Army find that does show up later wrinkled in his luggage. We go to the Olive Garden for dinner. At dinner he kept asking how long it would take to get home. Half hour, Sweetheart. Plumber to come Monday. We will also pick up our dog from the kennel on Monday. I keep repeating this information, one thought at a time, and hubby is reassured there is no problem. We are both so happy to see each other. He loved being with his family, but couldn't remember all the details. A grandson thoughtfully posted pictures of his vacation on Facebook.

Today the plumber came and cleared a box of spider webs by the main well and so water was restored. How weird is that! Thursday the phone company will be here for our land line. Just two situations.

Reflections. I have a tan and didn't gain weight. I have been waiting on hubby almost hand and foot, but the ship waiter pulled out my chair and put my napkin in my lap. Waiters with various accents robustly sang "Happy Birthday" to me on my birthday. I got to go to a workshop on nutrition where the speaker said she takes one tablespoon of coconut oil each day. I went to two workshops on napkin folding. About three mornings I walked for 30 minutes. Every night I went to entertainment including ice skating. I am still reflecting on the cruise--wonderful for me. Things don't seem so burdensome at home now because I had been pampered all week. I just relaxed about no water on Sunday.

Special thanks to my husband's family and my family for making this trip possible.

My Heart Is Heavy With Prayer Concerns

• Please pray for Dolores and her husband. He may be entering hospice.
• Pray for Sue and LaTane who are a widows now due to Alzheimer's taking their husbands.
• Please pray for Dana and her husband.
• Please pray for Sally and her husband.
• Pray for Laurie and her husband.
• Pray for Kathy Lowrey and her husband.
• Pray for Joe and Lynn.
• Pray for Living on Less and her family.
• Pray for Ruby and her family.
• Pray for Ann and her husband who is developing Alzheimer's-like symptoms.
• Of course pray for my husband also and his current obsession, my coping skills and my casting my burdens over to the LORD. He has promised to sustain all of us.

Middle of the night, folks. We are all called to bear one another's burdens and so fulfill the law of Christ.

Marriage and Alzheimer's

So today we celebrate our twelfth anniversary--quietly. DH's sister sent us a lovely card and we both gave each other cards. In the last week we have seen two movies--3-D Titanic, a movie we watched early in our marriage on a video. We also saw "Mirror, Mirror" which wasn't my husband's favorite, but I thought it was cute. We went to dinner at one of our favorite restaurants--not the best choice for my diet--but I did bring home leftovers. Then my husband forgot it was our anniversary several times in the last week including today.

A successful marriage involves for better, for worse, in sickness and in health. I hate the effects on Alzheimer's as we are going into what some call THE NEW NORMAL.

From wife to husband in "War Horses" movie:

I might hate you more. I'll never love you less.

I hate this disease, but I love my husband for his honesty in going through this disease. We are fighting it together.

“A successful marriage requires falling in love many times, always with the same person.” ― Minton McLaughlin

Prayer

Prayer has been described  as  "going home to God" and as "climbing up near to thee".


When my husband and I go to bed each night we pray, taking turns praying. He prays on odd days such as April 3, 5, 7 and I pray on even days  such as April 2, 4, 6.

I was so tired last night after a busy day. I had gotten up early to go to Weight Watchers by 6:45 (lost 1.4 pounds) and then to teach a Saturday class  to teenagers from 9 to 1. I stopped for groceries before returning home. When I got home, all I wanted to do was rest, but that $45 hair appointment half of an hour away awaited me and I would be charged if I didn't get there. Hubby went with me as he does whenever he can; he wants to protect me, and it also may be the Alzheimer's shadowing. The elegant salon served him a glass of wine while my hair was being cut and styled.


Wanting to make a date of it after the hair appointment we headed to the movie theatre. "Titanic" would be $30 for both of us and we decided to see this on our 12th Anniversary later in the month rather than last night when I told him I might just fall asleep. (This movie hubby owned when we were first married and it is part of his long-term memory and he will enjoy it in 3-D unlike the other new movies that don't impress him.) We headed instead to Macaroni Grill where I totally blew my careful diet. It is so easy to make dieting mistakes when you are tired.


I was tired and disgusted with myself for blowing the diet when we went to bed, but  I loved going home to God and climbing up to God with my husband's delightful prayer last night. Without the specifics because of his short term memory, my husband thanked God for the wonderful life, wonderful day, wonderful family and friends we have and asked Him to give us a good night sleep. I wish I could have recorded this prayer.


Refreshed this Easter morning, I reflect that Christ has gone home and is by the Father's right hand making intercession for us weak caregivers and Alzheimer's patients who want to climb up and be by Him in prayer.

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!

Respite Time and Prayer

My lovely sister-in-law called and asked me to take a break with her in several months. She is planning to take me on a cruise while my brother is on a golfing holiday. I am so overwhelmed by her generosity.


Our LORD Jesus took breaks. He, the second person of the trinity, needed breaks when He was human. He prayed for God's will before He went to the cross on our behalf.


I mentioned to DH about the cruise, last night, and he was not happy with the idea. Today he has forgotten about it. My prayer partner this morning said to make plans to go and figure out who will take care of DH and don't mention it again. DH probably doesn't realize he needs care--reminders to eat, take his pill, etc. Friends, please pray that someone or several people will come forward to offer respite time for me.


I am writing a paper on prayer for my current counseling class and really concentrating on being WITH our LORD and also praying for others. I ask friends, How can I pray for you? You now know one thing you can pray about for me now--respite arrangements. This is my leap year request.

DH is out in the backyard
mowing the lawn now.

So glad he can still do this
on his riding lawn mower.
The dog and I watched
from the porch
and then I clapped.

The Fear of a Caregiver

Those of us who are caregivers may have a whole lot to fear: our loved one may wander; hallucinations that result in violence; difficulties communicating; how it will all end; will our money run out; will our loved one continue to trust us or will they become suspicious; will they tell us if they have a pain; will they leave the stove on; will they leave the house naked; will I be asleep when something happens; end-of-life decisions when they can no longer swallow; will the loved one accept outside help so we can get a break; what if I can't take care of the loved one and how can I afford nursing home care; how can I maintain our home when it used to take two to do that. The worries are endless.

So the Obama administration has a new health care initiative for Alzheimer's that promises:

"In addition, the Fiscal Year 2013 budget to be released next week will include $80 million dollars in new research funding," US Department of Health and Human Services Secretary Kathleen Sebelius said today during a media briefing at the National Press Club. "Altogether, the Fiscal Years 2012 and 2013 investments total $130 million in new Alzheimer's research funding over 2 years, more than a 25% increase over the current annual Alzheimer's research investment," she said. The initiative also includes an additional $26 million in caregiver support, provider education, public awareness, and improvements in data infrastructure." See link.

How does the Alzheimer's and caregiver support get funneled down? How comforting is this?

What is comforting is the words that I read in my Bible yesterday from Psalm 31:1-7, NIV.

LORD, I have gone to you for safety;

Don't let me ever be put to shame.

Save me, because you do what is right.

Pay attention to me.

Come quickly to help me.

Be the rock I go to for safety.

Be the strong fort that saves me;

You are my rock and my fort.

Lead me and guide me for the honor of your name.

Free me from the trap that is set for me.

You are my place of safety.

Into your hands I commit my very life.

LORD, set me free. You are my faithful God.

I hate those who worship worthless statues of gods.

I trust in the LORD.

I will be glad and full of joy because you love me.

You saw that I was hurting.

You took note of my great pain.

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.

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.

Jan's Story by Journalist Barry Petersen

Recently a caregiver gave me Jan's Story by CBS foreign correspondent Barry Petersen. Sally read the book first and clued me in that it ended differently than she expected. I wondered why she said the ending was different.

In reading Jan's Story I discovered it is really BARRY'S STORY of how he copes with his wife Jan's Early Onset Alzheimer's. Jan becomes angry, confused and has friends who aren't there. She hardly recognizes Barry at the end of the story while Barry becomes lonely and overburdened with her care.

What did I as a caregiver learn from this caregiver/correspondent? Barry chronicles the stages of Alzheimer's as Jan goes through them. He writes to family and friends in the summer of 2007:

I am taken aback at how fast Jan's short term memory seemed to evaporate . . . it robs us of sharing daily experiences, and robs her of savoring the good things that are a part of all of our daily lives . . . I am losing more than a friend . . . also slipping away is the one person who was my confidante, with whom I could and did share everything. I feel like I'm trapped in a movie, watching it unfold and already know the ending . . . but with no way to rewind back to the good parts. (pp. 53, 54)

I can identify. I noticed that when my husband prayed before we went to sleep last night that he did not pray in specifics, but he did thank the Lord for the good day we had yesterday and the good day we would have tomorrow. But the Lord is the third party in our marriage and He takes us through each day. My husband's daily humor and my daily Scripture reading such as Psalm 23 takes me through the day.

Even when I walk

through the darkest valley,

I will not be afraid,

for you are close beside me . . .

Surely your goodness and unfailing love will pursue me

all the days of my life,

and I will live in the house of the Lord forever.

So much is familiar in Jan and Barry's story--having to order for my husband in restaurants, his misplacing things, his compensating for memory loss, sundowner's problems. Barry talked about Jan's coping experiences--ANGER, PRETENDING, SILENCE.  But my husband hasn't deteriorated as much as Jan has by the end of the book. 



While I respect Mr. Petersen and his riveting journey as a caregiver, his values do not represent my Christian values.  I did not see Mr. Petersen looking to the Lord for strength and guidance in his caregiver's story. He brings a third party (not the Lord), a new woman into the story for his loneliness. Barry seemed to find people to support his new woman while his wife is in assisted living. Even Jan's mother suggested Barry needed a side romance!

I am a caregiver who takes a different path. I have a different view of fidelity and an awesome God who is with me in this journey. Life doesn't owe me a husband. I married for the first time when I was 40 and when that husband died I was a widow for eight years. I love being married to my husband and we have so much joy in our marriage. Life doesn't guarantee a husband not get Alzheimer's. But I do have this chance to be faithful to my husband and be the best wife I can be while the Lord takes me through this.

One of my colleagues in Toastmasters cared for his wife for twenty years--so inspiring. He was the gentleman who recommended the book that I reviewed here, No Act of Love Is Ever Wasted. Mr. Petersen and I run in different circles, and I sure wish he had waited and found the strength of the Lord Jesus Christ.

When I got to the end of the book, I realized a blogger I follow had actually reviewed this book and had seen Petersen interviewed one Sunday morning. Barry's new lady is mentioned in this blog. See Early On-Set Blog Spot in January of this year which I did read. Here is how I responded:

I married for better, for worse, in sickness and in health, until death us do part.

Then the blogger herself responded with:

In his heart your husband knows he is lucky in love.

I found a Huffington Post article by Barry Petersen where he talks about guilt as he does in the book. See
Can a Marriage Die When the Wife is Alive. Here Peterson writes:

I have no answers for others, offering only what I have done and learned and chosen, knowing that it was right -- for me. I wish them luck. Like me, they will need it.

There is more than luck, Mr. Petersen. And there is God's help, grace and forgiveness for you.



 The name of the LORD is a strong fortress; the godly run to him and are safe.  Proverbs 18:10   

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.