Saga Twenty-Seven

Again this month Sally and I went to the Alzheimer's Association support group the second Tuesday while the husbands hung out at our house. Sally turned her cell phone off, but mine was on and I got several calls from the husbands during the support group wanting to know when we would be home. DH knows this is an Alzheimer's support group, but Jake, who doesn't think he has a problem, thinks this is our monthly ladies Bible study. Then the four of us had a good dinner at Longhorns. Sally and I shared the salmon dinner and Jake and DH had steak. The four of us then enjoyed the romantic comedy "Hope Springs". Both husbands could follow it. Our friendship with Sally and Jake is so important for making life normal for our husbands and Sally and I gain so much mutual support from each other.



from Pinterest--we need to friend



Last week my doctor was happy with my weight loss, but I still need to do more walking than only three times a week for the HDL number to improve. With a flare-up of carpal tunnel from over 15 years ago (maybe too much Pinterest, folks) I should not do many weight bearing exercises now. I am trying to avoid heart problems. My doctor let me cut down on one medicine which would have put me in the donut hole. Hubby is already in the donut hole with his medicine. It is interesting that Herb's cholesterol numbers in July are great and support his use of coconut oil.

Last Tuesday the arm on hubby's glasses broke off. Because we have Preferred Care for our Medicare coverage, we have a vision plan and a hearing plan. We both went to get new glasses from Plant City's new Eye Express. The glasses didn't cost us other than our adding tints for $50 for DH and UV protection for $12 on mine. I had lost mine in Louisiana last fall and have been wearing over-the-counter ones and trying to remember those sunglasses because of my cataracts. Hubby keeps asking when those glasses will be ready and I keep telling him Tuesday, unless the hurricane means Eye Express will be closed.

Hubby can ask at night what we did during the day and I recount the events for him, usually when we pray at bedtime. We do have so much to thank the LORD for each day.

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.

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. 

Saga Four

Sally and I went to the ALZ care group while Jake helped DH plant plants in the circle in our front yard. They have a fence that needs painting. I wonder if I can send DH over there to help with that.

I participated in the Memory Walk for the Alzheimer's Association on Saturday. Thanks to Lisa, Jane, Sherry and Phyllis who contributed funds for my team.

We appreciated the other primary care doctor my husband had, but it turns out the PPO such as AARP is more expensive. We will save so much more with an HMO. Today, after researching programs to supplement Medicare,  I signed us up for an HMO with WellCare for 2011. This wll help tremendously with the cost of medicine I wrote about in July. This involves a change of doctors for my husband, but I can keep the same doctor. I talked with the business manager in my husband's new clinic and we chose a new primary care physician.

Our Normal Life So Far

DH passed the DriveABLE test as we learned last week. The written report which came yesterday said he

appeared cooperative and effortful during testing. . . . .The driving performance is compared against normal, healthy drivers who also drove a dual-brake car. . . . [Husband's] driving performance revealed no evidence that driving competence is outside the range of healthy, normal drivers. Driving cessation is NOT indicated. Reassessment is recommended if there are significant changes in medical status or function. The recommendation is based on criteria developed through the scientific comparison of medically impaired and normal, healthy drivers across a broad age range. Those criteria enable normal, healthy drivers of [my husband's] age to receive a passing score. The DriveABLE Road Evaluation has been demonstrated through research to be sensitive and fair for both urban and rural drivers.

Wednesday he had an appointment with his primary care physician and I also went to that appointment, booking myself unavailable to substitute that day. I gave her a copy of the report on DH's Mixed Dementia evaluation from the Byrd Institute. She was pleased with his Hematology and Chemistry report that she orders every three months. The doctor agreed to let him stop the Plavix, which we are out of after 90 days, in favor of regular aspirin as suggested by a helpful comment from an earlier post on July 14 of this year. (By the way a lot of people have visited that 7/14/10 post according to the site meter.)  I have him taking ECOTRIN 325 mg Safety Coated Enteric Aspirin now. This saves us a lot of money. She was also glad that we use bright lights now in the family room where DH is always watching a movie.

Wednesday we also ran into a couple and had lunch with them at Plant City's Fred's Market. This was delightful and really my husband was great at maintaining conversation. I gave them a copy of my book. We were so full from lunch that we skipped dinner and went to my Toastmasters meeting. After the meeting we went to a McDonalds for dinner to see if I could get closer to winning in their Monopoly game. No luck and DH doesn't really like McDonalds he said. I am over eating there also.

This morning my husband was interested in the calendar for his chores. Change air filter. Wash the car. Love that huge FlyLady calendar and he had me write those chores on them. He also took note that the lawn needs mowing with his riding lawn mower. He has been puttering away at weeding the past couple of weeks for which I am grateful. We have a lot of yard to maintain. Carpenter James built this pergola structure between the two back yards several years ago and we enjoy the climbing roses on it.

I need to learn the procedures to the lawn mower because one day I will be the one mowing it; hope to make a sheet in my FlyLady Control Journal for how to use that mower.

Twenty-Five!

Yesterday I went with my husband to his doctor. We discussed how expensive his medicine is and she made some changes which can save money.  Basically she said, "I don't want you to mortgage your house for his medicine." I will write more about this with a forthcoming post.

Before he took a that thirty question test, she repeated what I had heard her say before. "I don't understand how you worked so long."

"It was his long-term memory," I said and she seemed to agree.

In front of him she said, "His dementia will not be getting any better!"

"Should we see a neurologist to see what kind of dementia he has?"

"You can," was the reply but we didn't arrange for one yet.

After she left, her nurse came in to give my husband THE TEST. He scored 25 points! Now mind you in December of 2008 he scored 22 out of 30 and she told him point blank, "You have dementia." His points have been going up, with the last one being 24 out of 30 six months ago. I was prepared that we were going to go downhill especially after she said, "His dementia will not be getting any better!"

It has occurred to me that I am fretting too much. I have been reading books that fan my worry and tomorrow I start a three session caregiver's class. I have been a widow once, and I am just going to enjoy being his wife and ask our Lord to help with the worry. Look up these verses--some of my favorites.

Philippians 4:6,7,12,13 and I Peter 5:7

So tonight I told my hubby that I was going to a health class tomorrow. He wanted to know what kind. I said it is a class for me to be the best wife I can be for you to train me in caregiving for dementia. I didn't use the A word--Alzheimer's. He seemed to feel I am making a mountain out of a mole hill. Just trying to be the best wife I can under the circumstances, sweetheart!

Costs

Medicine. There is a huge expenditure for the two memory medicines for my husband--roughly $300 a month (or $3600 a year). Fortunately my doctor has given me phone numbers where seniors can get the medicine for less and I am calling tomorrow about this possibility.

Emotional Stress. I succumbed to emotional eating and put weight back on this fall due to the stress of my husband's dementia. Now I am dieting again.

Time. We go over and over how to use the DVD player and how to record programs. I just keep explaining this to my husband. We write it down and I put labels on remote controls and equipment. Again I am in training for dealing with making tasks simple for him.

Gratitude. I am thankful that I have a thoughtful husband who asks maybe four times how my day was. Then four times I have the privilege of telling him how it was. I am grateful that he appreciates me and often says so. I am thankful that he has a job to go to that is people-centered and he loves it. These are good days. Thank you, Lord. Help me to rejoice always.