On My Way to Caregiving

My mammogram and sonogram caused great concern yesterday. The last time I was checked was in 2008 and I had to have a biopsy then. Yesterday I saw with my own eyes while I was laying down my right breast on the sonogram. There is a huge mass there. That breast is misshapen now and I just assumed it was from the December 19th crash with the DUI driver. But maybe a lump was there before the crash as my new doctor suspects.

Yes, this breast was a concern in 2008 when it was checked. But I didn't go back to have another check. What have I been doing since 2008? DH helped me write a book--I read it to him. Also since 2008 I have had a growing concern about my husband's dementia, and didn't book yearly mammograms.

According to this link we women over 55 have a greater chance of getting breast cancer. I did not know this before looking it up for this post.

Sue who has been invited to write on this blog, has had breast cancer recently and it was very difficult for her as her husband's Alzheimer's caregiver to take care of him and go through her own procedures. I believe she is over 55. Love you, Sue, and miss seeing you. You had to quit work to take care of DH and now he has cancer also and I heard you haven't told him about his cancer. You don't even have time to get on the computer now and you always told me your faithfully read this blog! Must visit you and have a front porch chat.

Next week that breast with the massive growth, that I just thought was sore and swollen due to seat belt injuries in the crash, will receive a biopsy. Gotta take care of this caregiver ME!

Feb. 2. No biopsy! It was hematoma caused by ruptured blood vessels at the time of the crash! It will get better after time! Thank you LORD!

Seventh Book Report: Living With Alzheimer's--Part One



Living With Alzhiemer's by Joseph Potocny

His trademark signature is: God bless you and this great country of ours.  Since September 25, 2006 Joe has been blogging about his Early Onset Alzheimer's and Frontal Lobe Dementia. Over 43,000 people have visited his blog. He is like a reporter on the disease and this blog became a book at the end of 2010. There are humor and stories in his blog and book. There are dark thoughts there also.  He tenderly writes about his grandchild whom he goes to the park with, but who needs to help him walk back home so he can find his home. Wife Lynn writes on Joe's blog:

Thank you for giving our grandchildren memories and our children memories that will carry on. I'm glad today is a gentle day for you.

Joe writes insightfully:

• Alzheimer's does not care who or what you are. It just keeps eating away at your mind taking its share each day. I know it sounds like I am very coherent, but it takes a geat deal of concentration on each word.
• Delightfully Joe decides to not use spell check, but you can figure out what he is saying. For him to stop and worry about mechanics would mean he wouldn't get his words out. No spell check anymore the real me will be here from now on, he writes January 13, 2007. "I see confusiooon and pain in my falyms eyse and how they trey ther best to bollster me up." "This fricken disease really sucks. I waitn on My Lord to take my hand willing to go with him.I have tought serousisly oabout doing something, but wor=uld screw that up. Be paraliiized and not know it or who I was. Wahat a bitch. This is my life now. One day at a time, it leaves me further hehiind and I catn catch it. Keep those cards and letters coming in, I due answer them, the best I can. nornalllly the first time with spel ckr, after that you get me."
• I think of what [Lynn, Joe's wife] still has to go through with me and it bothers me greatly. My family will feel the strain as well as will my friends. I can only hope that they find the strenghth inside themselves to know that they are loved by me and I care about their concerns.
• We feel the slow loss inside of us. We are aware more than you think. All we ask is talk to us, offer your hand and understand when we need it.

Joe complains about all his medicine as my husband has. (I complain about the expense of it here.)  Early on Joe quotes the serenity prayer.  Joe records dialogues with others. Dirty Butter writes to him:

God Bless U, Joe!! I would imagine that was very hard to share. Such a scary thing to watch yourself disappear. But you can still love and be loved until God is ready to take you home, Joe. Cling to that!!!

Joe's wife Lynn writes:

Just so you remember at least for now that we do not consider you or anybody else a throw away. Your family is not like that. And there may come a day that we have a few problems with you and would like to put you out the door, but it is not going to happen. I wish there were a few more days with sunlight in them for you. Hold my hand when it gets dark.

As time goes on Joe has more difficulty. I am even in his book. Septenber 14,  2010 NewKidontheBlogg from PlantCityLadyandFriends wrote:

Thanks so much for explaining so well how it is for you. I am sorry that you are experiencing confusion and trouble walking. May the LORD sustain you each day and give you things to enjoy. --Carol

I was thinking about Joe and Lynn tonight as I read a quote on Facebook. John Piper quoted M'Cheyne:

To manage a life of pain,

as a believer in Jesus remember:

This is all the hell you will ever bear.

God bless you, Joe and Lynn,  and thanks for writing such an honest book.

Saga Eight

We both go to the chiropractor three times a week and I still have pains. DH is doing well and not hurting, but not released from the chiropractor yet following our crash over a month ago. The chiropractor told DH he needs to walk.

So we took the dog to the track to walk. Sally and Jake were out of town and we couldn't walk with them.  DH decided that he wanted to drive the two miles to the track--first time since the December 19th crash. Oh no, I thought! But maybe he will walk! It was not to be. Our dog and I walked the track and DH sat in the car and watched. So much for exercise. So much for DH NOT driving.


For the past two years my husband has been in denial about his dementias. Sometimes he covers himself with statements such as everyone is getting older. I think the kind thing is that I encourage him to acknowledge his handicap. Every morning he takes notes on what is happening for the day. Today I remind him to call a family member, and that we have church and a social event in the afternoon.

Recently we took out dog to the vet and chatted with him about the past six months. In front of my husband I mentioned to the vet that DH has been disgnoised with two kinds of Alzheimer's, but is doing well. My husband didn't flinch when I said this.

My husband commented on all the pills he takes compared to me. I said, "You have had a heart attach and you have dementias and that is why you have so many pills." He didn't say anything.

The seat belt over my right breast made huge bruises at the time of the crash and hard spots have appeared on that breast. My new doctor said that lumps were probably there before the crash and she is moving quickly on tests for breast cancer. Hence I am scheduled in the next two weeks to have a mammogram, sonogram and biopsy. My chiropractor is also glad this is being checked out. I mentioned to DH that I would need him to drive me home from the biopsy--maybe five miles. I should not have told this to my husband because we are reversing his decision at the time of the crash to not drive.

Prayer requests. I talked with Dolores last night and she is having a hard time with her ALZ husband. Pray for them. Pray for my medical tests. Pray about my husband accepting his limitations and accepting not driving. (I want to change the insurance to one car and one driver to save money next quarter.)

Blessed

Psalm 17:6,7 I am praying to you because I know you will answer O God. Bend down and listen as I pray. Show me your unfailing love in wonderful ways.  

Proverbs 3:33 The LORD curses the house of the wicked, but he blesses the home of the upright. The Living Translation 

Her.meneutics on Alzheimer's

The above link describes the care of this Christian home, called The Beatitudes, in Phoenix, Arizona. The patients are given their way on many things.

As a result of these and other caregiving strategies, patients at The Beatitudes demonstrate virtually none of the “agitated, delusional behavior common with Alzheimer’s.” The staff recognizes patients as individuals with bodies, minds, and spirits who need affirmation, emotional support, and relationships.

It does make a difference when Alzheimer's patients are treated with respect and Christian charity! The caregivers also learn to practice the fruit of the spirit found in Galatians 5 including PATIENCE.

The New York Times even highlighted this Arizona facility.

I am learning to spoil my husband on his preferences unless they are harmful to him or we can't afford something. Then I have to be so careful to explain. Usually we have peace in the home. So far.

Last night he said to me, "What would you like to do?" I was thrilled.

"Go to the Mall," I said. We did and had dinner at Ruby Tuesdays and I even spend a little bit of money on sale items--haven't done that in ages.

At the Mall he saw a gentleman he used to work with. He woke up this morning and mentioned him! Maybe that RNA tablet is working! He didn't have short-term memory!

Thank you, Lord!

For the Good

Here is a cherished Bible verse from Romans 8 in The Living Translation:

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. For God knew his people in advance . . . .

How can Alzheimer's, tight finances and a crash with a DUI driver work together for the good? I am thinking of a few examples.

• Even though DH was approved to drive by an Alzheimer's Institute in October as I wrote earlier, he decided at the time of the crash that he would not drive again. He appreciated my trying to avoid the crash and we are both grateful to God for sparing our lives. With only one car now, he will not be able to forget and drive again.
• We have $380 more a month because State Farm paid off the car loan. (We are also saving money on Medicare supplemental insurance by going with Preferred Care as I previously wrote, but this is not a result of the crash. With savings we can now knock down our credit cards.)
• We learned how to get into bed and out of bed when DH was hospitalized overnight after the crash. Sit with your knees against the bed and put one hand out to lower yourself on your side. Then you can roll over. When you get out of bed, get back on your side and use your elbow and hand to help you get up so that you don't strain your back.
• Our excellent chiropractor is helping both of us recover from the crash and we are learning about new supplements from the chiropractor. DH is now taking Ribonucleic Acid (RNA) to help with memory. I am starting to see that RNA is helping his short-term memory. The suggestion of CoQ-10 will also be implemented after I notice more results of RNA. Why doesn't the ALZ community also know about brain circulation help from a chiropractor? Because the research money is not there. (Coconut oil does have research behind it and DH is getting that.)
• Added 1/13. My husband avoided the seatbelt injuries that I received. Even so, his bracing himself and moving forward did cause back problems. The chiropractor said that men are stronger also.  I know this is true.
• Added 1/15. I taught a class for first time DUI offenders last week, my first one since the crash of December 19th. I think I was effective because of the first-hand experience I had. I showed the picture of our Saturn below, but didn't mention the anonymous couple involved. We had a good discussion about what might have happened to that couple. I also had new questions to ask: What do you estimate your BAC was when you were stopped, not the reported BAC at the jail. Was DUI your only charge when you were stopped?
• Added 1/17. I went to my new primary care physician today and she said that the mass in my right breast might not be from the accident alone. Hence I am going to have that breast checked out for cancer. My chiropractor says that with the extreme trauma to that breast, a blood vessel might have broken. They continue laser treatments in the chiropractor's office. If I have breast cancer, this 12/19 crash has caught it. Should know in February.

The Christian is not guaranteed an easy life and thank God we are looking forward to heaven when there will be no more tears. The LORD will be with me all the way as he chooses caregiver for my life now.

Recent Research

Going to try to implement walking with husband. Sally and Jake, DH and I will try it on Saturdays Walking and Alzheimer's This way Jake and DH can walk at their own pace and Sally and I can talk and walk more briskly. We know the socialization is good for our husbands and wonder when they will figure out that each other has Alzheimer's. So far they accept each other's stories being repeated, because they don't remember those stories.

New York Times says to give Alzheimer's patients their way:

Techniques include using food, scheduling, art, music and exercise to generate positive emotions; engaging patients in activities that salvage fragments of their skills; and helping caregivers be more accepting and competent.

I agree to give DH his way on most things. I put my foot down if he refuses to go to the doctor. He has long-term excellent habits. For example, he folds his own laundry and makes our bed since I usually am up first.

Rockerfeller University  say that Vascular Dementia and Alzheimer's are more related than we previously thought according to the UTube Video. My husband has both--wonder how many others have both.

NAPA has been signed by Obama. We will see how effective this new law is, but it certainly is timely.

Our chiropractor has suggestions on supplements for memory to aid to the coconut oil. Will try one at a time. Not sure there is a cure for Alzheimer's, but brain circulation is improved certainly with these visits and we are getting slowly better after our crash of December 19th. DH will talk about his back hurting and I remind him of that event, because the crash is foggy to him.

New Years Day Winners

Plant City Lady and Friends is my most prolific blog. I write on it the most and have the most followers. A few people from this blog have written on another blog I write on about once a month, but this blog, about hubby's dementia, captures the most comment.

I intended to sleep in, but woke up at 6:30 am this morning. I put names for November and December for those who have posted on slips of paper. I took out drive by posters and people whom I know have already read my book. I wanted to send all those who were left, but I said "three".  Three winners were picked.

• Dolores, who blogs about her own husband's Alzheimer's and who is an official author on this one.
• Georgene who posts as "Living On Less" with her own inspiring stories.
• Karen, who cares sweetly, almost unnoticed, for her mother with advanced Alzheimer's.

DH and I spent a wonderful evening at the home of our friends, Sally and Jake, last night. About 10:30 PM my husband was wrestless to leave and so we did. We both slept well.

I have had two appointments with a chiropractor and yesterday morning my husband had his first appointment. It went well and we will continue this needed therapy following that December 19th crash.

Drawing for Free Book

In honor of the two year anniversary of this blog (and two other ones), I am giving away to three people a copy of my book Getting Off the Niceness Treadmill. You have to have commented in November or December on any post to enter the contest. The drawing will be 1/1/11.

Saga Seven

We had an automobile accident Sunday coming home from church. It was a crash waiting to happen. It is no "accident" when someone decides to drive after drinking. The picture shows the investigation by the Sheriff's Department. Call it that driver's crash and our "accident", where we were protected by divine hands. (Nothing in our lives is an accident knowing that the almighty God is there for us.)

I am driving our Saturn and see an Explorer not stopping at a stop sign and barreling though the railroad tracks perpendicular to our car. There is going to be a crash! I swerve into the oncoming traffic lane where there were no cars to try to avoid being hit, but it was not to be. LORD, thanks for our lives. Thanks that I am not a widow again. The driver gets out briefly and then tries to leave the scene. However the good old boys of Plant City are not going to let him flee the scene. The Explorer trying to flee loses control and ends up driving on the railroad tracks before being stopped by perfect strangers who are waiting for authorities to come.

• 5:01 pm the Sheriff  receives call from 911 dispatcher.
• 5:08 pm they arrive at scene.

• Paramedics check us out. Huge bump on DH's leg gets treated with an ice pack. I suspect that the glove compartment flew open and caused this. Note in the pictures how close my husband in the passenger seat was to being hit straight on.
• A lovely lady whose husband is the Youth Minister at nearby church comes and prays with us. We also pray for the gentleman who hits us. By that time we have heard that he smells of alcohol. She also uses my digital camera to shoot pictures.
• Daughter of DH comes and we transfer items to her car where we wait until they are able to let us leave. (I had called her on my cell and police let her car through the barricade.) 
• Tow truck carts off our Saturn.
• Railroad worker inspects the train track.
• 7:00 Report is finished and we are allowed to leave. We see Explorer driver given sobriety tests as we leave.
• 9:00 Arrest for DUI with Property Damage and no valid driver's license. He did not face other charges according to the Sheriff's on-line report such:  open container (reportedly he had taken them out of car); fleeing the scene; running a stop sign; and no valid insurance.  
• 10:37 PM Gentleman  is checked into jail and bond is set at $2,750. DUI with property damage is $500, $250 no driver's license, $2000 for previous warrant for no driver's license. BAC (Blood Alcohol Concentration) given as .172/.180. This makes his BAC well over .25 ( three times the presumptive legal limit in Florida) at the time of his crash and the estimate is that he could have had ten beers or whatever alcoholic drink he chose to imbibe in a short period of time. (You lose .015 BAC per hour after you stop drinking. According to Sheriff's web site he has been in jail two nights now--no one bonded him out.)
• Meanwhile at home DH goes to bed with yogurt and his medicine including Ibuprofen which DH's daughter thoughtfully goes out to get for us. I take a pain med and Ibuprofen and start to get food before I pass out. I recall holding strangely to the kitchen counter and thinking what am I doing this for?  I was passing out. I raise up and fall down and vomit. I call DH and he comes and then leaves and vomits. Our problem was we didn't eat enough with the meds.
• Middle of the night my husband complains of back pains. I finally get to sleep at 4:30 AM.
• Monday at 9 AM call State Farm Insurance and receive calls from them all day. Both of us are sore.
• 4 PM husband has doctor's appointment, gets anti-inflammatory and muscle relaxant, shot, and prescription for x-rays for his back. My doctor will get back to me about an appointment on Wednesday.
• 7 PM we have dinner with Sally and Jake at ABC Pizza and tell them all about it. We make tentative plans to spend New Year's Eve at their home.

We both thank God for our lives.

Economical Update for 2011

Two Alzheimer's medicines have almost bankrupted us. Not taking them is not an option. See Research.

"The combination of the current symptomatic treatments for Alzheimer's disease improved the patients' quality of life, since those who used concomitantly cholinesterase inhibitors -- donepezil, galantamine, or rivastigmine -- and memantine had a diminished risk of institutionalization compared to those who used no medication or used cholinesterase inhibitors alone." -- Dr. O. L. Lopez, University of Pittsburgh School of Medicine

I once e-mailed Dr. Newport (lady who introduced me to coconut oil) and she said to not discontinue either medicine as we continue with the coconut oil. I was not consistent on the Exelon Patch and that is when we went to Exelon pills. DH has to eat when he takes his twice-a-day Exelon pills or he will vomit.

Does Prescription Solutions from the AARP plan really help save in the new year? Absolutely not! For several years we have been going beyond the donut hole and into catastrophic coverage for my husband with them. One recent year when we maxed out our credit cards due to prescriptions from AARP, we used the line of credit on our house to pay off the credit cards. We are about to do that again and I do not want this. We have until December 31st to decide.

We went with WellCare at 1-888-888-9355. Gene was great in helping us. Got our new cards. They are excellent. However it meant a change in doctors, but much more savings.

Wait folks. News just in! In the dash for the best plan for 2011 by December 31st, an insurance representative Ned called. I research and listen to all possibilities and it is not yet December 31st. Possibly we could keep the same doctor. He took time to see us last Saturday. We didn't go with his plan that would keep my husband's current doctor, however, because Ned had a different idea--a plan with a higher amount until we would go into the donut hole ($3500  compared to $2840 with WellCare). Preferred Care Partners, Gold Plan, at 1-866-231-7201. They also offer dental coverage and eye coverage. I visited the local doctor's office and chose another doctor for us, unfortunately not keeping our same doctors, but bringing those other fabulous benefits.

All we save a month that we used to spend on the AARP plans (over $400) a month, we can use to pay down our credit cards and not go into our line of credit on the house. Thank you Lord, for answering prayers from the women at church who were praying about this and for the rest of you in blogland who pray for us.

Oh God, I beg two favors from you;

let me have them before I die.

First, help me never to tell a lie.

Second, give me neither poverty nor riches!

Give me just enough to satisfy my needs.

For if I grow rich, I may deny you and say,

"Who is the LORD?"

And if I am too poor, I may steal and thus

insult God's holy name.

Proverbs 30:7-9, TLT-- What I heard today on The Daily Audio Bible,

my third year going through the Bible with this podcast.