Fourth Book Report--No Act of Love Is Ever Wasted

Another Christian book has come out called No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia by Jane Marie Thibault and Richard L. Morgan. Dr. Thibault is a gerontologist and clinical professor and Dr. Morgan is a retired chaplain and counselor. Both have dealt with Alzheimer’s in their own families as well as professionally.

Thibault and Morgan are critical at how the church has handled ministry to persons with dementia and Alzheimer’s. Seminaries do not train for this ministry and few pastors spend time visiting persons with this disability. The authors reflect on the ageism in society and in the church.

Both clergy and their congregations tend to reflect the prevalent ageism of our society. We have not moved far from the ageism of Shakespeare when he wrote, “Youth is hot and bold, Age is weak and cold; . . .Age, I do abhor thee; Youth, I do adore thee.”

Ageism demeans and devalues older adults, and nowhere is this attitude more obvious than toward people with dementia. The church continues its relentless focus on youth ministry. Church leaders insist that we ensure the future of the church by reaching young people. It may be popular to say, “Our hope is in the next generation,” but we must not forget that our hope is also in the past generation. In many mainline churches, older adults pay the bills, thus providing funding for the youth ministries!

I am fortunate that in our small congregation people are very supportive. They read this blog and some comment. I feel they are learning along with me. I know that elsewhere others are along for my journey as well, bearing burdens.

I am not going to summarize this book, but point out what they say about Spiritual Needs of Caregivers. I found their list of “most pressing and frequently occurring spiritual needs” most helpful. Their list is in bold with my comments to follow. I also cite the Twelve Steps for Caregivers , which I am not necessarily in complete agreement with.

1. Caregivers need to know that no act of love is ever a waste of time for them or the one they are caring for. They need reassurance that caring is important spiritual work, even if it is demeaned by society. In contrast the aforementioned Twelve Steps say “I can control many aspects of how it affects my loved one and me.” However, the Christian experiences joy by losing one’s life for what we are called to do, giving that cup of cold water, washing feet, not controlling the situation.
2. Caregivers need to be reassured that their loved one’s soul and spirit has not disappeared to become diseased. Absolutely, one day those who are His elect will be resurrected with a new body united with our souls.
3. Caregivers need to know that their caregiving does not have to be (and could never be) perfect. The authors point out that just as we can never be perfect parents, we can never be perfect caregivers. The Twelve Steps say “I need to remind myself frequently that I am doing the best I can at this moment.” Doing our best is a humanitarian way of excusing our faults, whereas being a caregiver is part of our genuine sanctification. We will keep learning.
4. Caregivers need to know that they are forgiven when they cannot love. The authors point out that love is not just a feeling, but an act of the will. This is consistent with the Christian marriage commitment to death us do part. The Twelve Steps say, “Increasingly, I need to depend upon other relationships for love and support.” I have known several people with a disabled spouse but, to their discredit, have had a “significant other” on the side. Doing acts of love, however, does rekindle feelings of love. We love regardless of the reciprocation.
5. Caregivers need to know that even if their loved one does not remember them, their soul/spirit is delighted by a visit or by the time the caregiver spends with them. From the Twelve Steps: “I need to structure my day because a consistent schedule makes life easier for me and my loved one.” The Steps make visiting or being with the person with dementia as a chore—be efficient. The Christian book gives an example of a daughter who forgave her father and came to love and care for him in his last days “as if I was caring for Jesus.”
6. Caregivers need to know that they can be the presence of God to their loved one, and that their presence is as important as any task they actually do for the person. Whether we say a prayer audibly or not, we can pray and show we care.
7. Caregivers need to know that they may experience what is called “anticipatory grief”—grieving in advance of the person’s death. This is normal. The authors suggest sharing these uncomfortable feelings with a pastor or friend.
8. Caregivers need to know that they too are God’s beloved and that God wants them to rest and have joy, and care for themselves. The Twelve Steps put this idea in selfish terms: “I need to take care of myself so that I can continue doing the things that are most important.” Dr. Thibault relates how even as a teenager who lost both of her parents, she learned to draw apart. For her it was sitting in a car.

Recently my husband has seen me glummy. He realized that I was under pressure with a class I was taking and with our finances, but he doesn't realize that I am so concerned about him. DH tells me to calm down, relax, and take things in stride. That's what I will have to do. Then I also read where Paul wrote to the Philippians:

God who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns . . . . you have been given not only the privilege of trusting in Christ but also the privilege of suffering for him. We are in this struggle together. . . .Don't look out only for your own interest, but take an interest in others, too. . . . Do everything without complaining and arguing. . . .I have learned to be content with what I have. . . .I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everying through Christ, who gives me strength. . . . And this same God who takes care of me with supply all your needs from his glorious riches, which have been given to us in Christ Jesus. The Living Bible Translation

Beautiful Piece of Advice

This morning I am at wit's end hearing my husband keeping on asking about when two DVDs will come in the mail. It is hard for him to understand time differences between August 20 and August 23, for example, on the Amazon DVD. He thinks that Amazon and another outfit have been holding hostage our money instead of shipping the DVDs. "Check you statement," he orders. He doesn't understand that this is not on the debit card, but on a credit card and it doesn't show up right away on the last mailing. He has asked me about these two DVDs numerous times and doesn't understand I can't control when something comes in the mail! I blow up at him--something I rarely do--I keep so much in. He tells me to lighted up. I he watches me send an e-mail to Hotmovies or whatever and is satisfied. That e-mail bounces back. I guess I need to investigate it further because it was ordered on July 29th. But stay tuned. There is good news.

We get a call from the doctor's office. His biopsy was negative! Thank you, Lord! I tell him I have not been worrying about his darn DVDs because I have been worried he might have cancer. (I don't also say I am worried he might have Alzheimer's which we find out September 7th--the heavy burden I have been carrying for almost two years.)

He says, "What's gonna happen is gonna happen. It is in the Lord's hands. So I don't worry about it!" Isn't this great! I cherish this spiritual leadership from DH. I am going to remember this.

Then I get a wonderful e-mail from my Pastor's wife, including this flower.  It says:  An Angel says, 'Never borrow from the future. If you worry about what may happen tomorrow and it doesn't happen, you have worried in vain. Even if it does happen, you have to worry twice.'

1.  Pray.
2. Go to bed on time.
3. Get up on time so you can start the day unrushed.
4. Say No to projects that won't fit into your time schedule, or that will compromise your mental health.
5. Delegate tasks to capable others.
6. Simplify and unclutter your life.
7. Less is more (Although one is often not enough, two are often too many.)
8. Allow extra time to do things and to get to places.
9. Pace yourself. Spread out big changes and difficult projects over time; don't lump the hard things all together.
10. Take one day at a time.
11. Separate worries from concerns . If a situation is a concern, find out what God would have you do and let go of the anxiety . If you can't do anything about a situation, forget it.
12. Live within your budget; don't use credit cards for ordinary purchases.
13. Have backups; an extra car key in your wallet, an extra house key buried in the garden, extra stamps, etc.
14. K.M.S. (Keep Mouth Shut). This single piece of advice can prevent an enormous amount of trouble.
15. Do something for the Kid in You everyday.
16. Carry a Bible with you to read while waiting in line.
17. Get enough rest.
18. Eat right.
19. Get organized so everything has its place.
20. Listen to a tape while driving that can help improve your quality of life.
21. Write down thoughts and inspirations.
22. Every day, find time to be alone.
23. Having problems? Talk to God on the spot. Try to nip small problems in the bud. Don't wait until it's time to go to bed to try and pray.
24. Make friends with Godly people.
25. Keep a folder of favorite Scriptures on hand.
26. Remember that the shortest bridge between despair and hope is often a good 'Thank you Jesus .'
27. Laugh.
28. Laugh some more!
29. Take your work seriously, but not yourself at all.
30. Develop a forgiving attitude (most people are doing the best they can).

Thanks Mrs. T. for sending that e-mail. It's bearing one another's burdens that helps so much.

 I also appreciate others who send me their love and prayers.

Another Tampa Date

FlyLady talks about husbands as "DH". This morning DH had another MRI to compare with the MRI he had in Lakeland December 2008. I did not sleep well last night, but wonderfully there was no problem getting him to go to this appointment and he drove with the use of his GNS. His MRI was at the University Diagnostic Institute on USF's campus just south of the Johnny Byrd Alzheimer's Institute. We had a little time to kill until our next appointment and we went to a bookstore where DH got two DVDs and I got Phillip Gulley's Home Town Tales.

We walked up that same winding path as we did on Tuesday. At 11:30 we met with 30 others for a tour* of the Johnny Byrd Alzheimer's Institute. Built two years ago this six story building is the largest Alzheimer's research facility in the world.

The 32 of us divided into two groups. We first toured the diagnostic part on the first floor where a team of psychiatrists, neurologists, gerontologists and neuropsychologist have their offices.

The tour groups traded floors and we saw the research part on the third and fourth floors. An open floor plan allows for a cross-pollination of ideas. The basement houses 5000 mice for the research, but we were not allowed to see that--we might infect the mice! The fifth and sixth floors are for further expansion.

Back to the ground floor we were treated to lunch and an LCD slide presentation and talk by Dr. David Morgan, Byrd's CEO. Here are part of my notes:

• Early Onset Alzheimer's is inherited, but not the later stages. So DH's adult children do not have to worry they will inherit this disease.
• 10% of the population over age 65 has dementia. 40% of the population over 85 has dementia.
• West Virginia has the highest per cent of dementia in the states because the young people have left that state for jobs elsewhere.
• In Florida there is $12 billion in health care costs for dementia per year.
• The Amyloid Hypothesis was developed around 1990. Mice are being give anti-amyloid vaccines and with success.
• The Tau Filaments Tangle Hypothesis came around 2000.
• RN1219 reduces plaque and improved cognitive function.
• While most of dementia is Alzheimer's, by a process of elimination Byrd is able to find out if DH has a reversible dementia or a problem of another nature. This is what we will find out on September 7th.
• Bryd also does research studies with caregivers.
• PET neuroimaging can detect who has amyloid prior to the onset of symptoms. Would people want to know?

• Dr. Morgan said we are on the verge of preventing dementia by discovering who is at risk.
• Aluminum is not a significant cause of Alzheimer's.
• Axona is a prescription that one can get and this can help. I will look into this.
• Dementia happens at a later stage of Parkinson's disease.
• I asked about coconut oil and MCT and research is being done on these--but he wouldn't say much. He has met Dr. Mary Newport.

Do not hesitate to take this tour (see dates below). It was incredible to me that DH and I did this tour together. He has asked me tonight about what we did today and I said we were at an exciting research institute that will be diagnosing his dementia. Furthermore he may be able to get in a research study.

Thank you, Lord, that I felt so free at last!  Today DH and I actually communicated about his dementia! Maybe I can get some rest tonight! 

*The next tours are Sept. 21, Oct. 26, Nov. 18 and Dec. 14th. Contact Holly Lisle at hlisle@health.usf.edu.

Also, November 16th you can sign up for a free 30 minute memory evaluation by calling 813-974-1294.

Tampa Date

By this time I am an old hat at getting my husband to go to the doctors. Prepare him the day before, and the day before that, and the day of the appointment remind him in the morning, making sure he has time to get ready. This time it is a memory assessment--I didn't use that Alzheimer's word. He drove us to his 10 am appointment with Assistant Director Nancy. We walked up the winding path to the building and he did not see USF Johnny Byrd Alzheimer's Institute on the face of the six-story building on East Fletcher Avenue. He signed some forms. See his back--doesn't it remind you of my birthday card below (6/26)!

The entire appointment was actually fun. My husband felt that us two ladies were ganging up on him. I told Nancy stories of things he had lost and forgotten and the problem he has with thinking I don't wash clothes but brought them back to our bedroom unlaundered. Nancy heard the Full Moon story below (7/26) and the three of us laughed about it.

"Nancy, he thinks the clicker to his car door also opens the garage door."

"Does he help around the house?  Does he still drive?"  "Yes" to both I answered.

"Who makes sure he gets his medicine? Who cooks? Who takes care of the finances?" "I do" I told her.

She asked him lots of questions and he was comfortable answering or not answering them. Then I left the room and she gave him a more thorough test than the 30 question test he had been given in his doctor's office.

When his private interview was completed, I returned and she gave a preliminary assessment that his word fluency and word finding were somewhat lacking. He has difficulty with time and date (even though he has a watch which tells him the answers), and new learning is more difficult. All of what she said I could vouch for.

Next she said she would get his B12 reading if his primary care physician recently took that. If not, she gave me a script for it.  She would order his MRI from December 2008. The B12 reading is because B12 deficiency is the one easy-to-cure kind of dementia. Thursday morning he will have another MRI at USF's University Diagnostic Institute to compare with the December 2008 MRI. The final dementia diagnosis will be September 7th. At that time they will see if he fits into a research study. Then we will know if it is probably Alzheimer's or not.

We went to lunch at Panera Bread not far from the USF campus. My hubby always has me order his food these days. I ordered 1/2 beef sandwich and a salad for him (he had been so deserving of beef that I did not try to sneak a Mediterranean meal in on him). We drove by Busch Gardens and he remarked that we need to save money so we can go there or go to an Orlando attraction. Noted--embrace the moment while we can.

We went on other errands including visiting my father-in-law's grave in Tampa. I reflected today that my husband likes to watch WW II movies because his dad was in that war as you see on his grave marker.

Sunday at church my friend Sherry who works with an attorney bought us our wills which were witnessed after the worship service, notarized and signed. Another couple did theirs at the same time. Usually we don't do "work" on the Sabbath, but this was a wonderful gesture that saved us $500. I now have Non-Springing Durable Power of Attorney for my husband; later on if I had to get guardianship it would be at least $6000 with a yearly fee of maybe $1500 from then on.  All of this is unnecessary since now I have Durable Power of Attorney. I am also his Health Care Surrogate with my husband's son as the alternate and other alternates in the various other documents. We are making copies of our Living Wills for our automobiles in case of an accident. Other documents with their blue backs are going in the safe.

I got the silver alert phone number today on a refrigerator magnet. It is 877-404-SILVER or 877-404-7458. The silver alert is used when a car/person is missing. The family can call in the car description.

Hubby doesn't worry. He didn't think about wills and graves today. I plan to enjoy him and keep him as healthy as possible for as long as possible.
.

Dr. Appointments

No man in his everylasting right mind would voluntarily want to have that prostate biopsy, would he! And on Friday, the thirteenth! Well he had it at 9 am. He humorously said it was like they stick something up your A___ to your tonsils! He didn't know the date and I didn't point it out.

So when hubby woke up 8/13 and I told him that he needed to shower and be ready to leave for the appointment, of course he was a grouch!

"I am not going!" he pronounced. Well I had that earlier on July 26 when he pronounced "take me home. I am not going to the doctor." Gentle reader, you can see that day below where, against my better judgment, I obeyed him.

So knowing what I was up against, I yelled "You are too going! I don't want you to get cancer because you didn't go today and this is highly treatable and common for a gentleman your age! I am setting the timer for 15 minutes and then you shower!" It worked. He obeyed me this time.

Now I am not the one to yell at a husband. Once my late husband heard me yell at students and he was soooo shocked because he had never heard me yell!

We will find out the results of the prostate biopsy in about a week. Meanwhile it may be a struggle to get my husband to the appointment next Tuesday--we drive up to a building in Tampa that has "Alzheimer's Institute" on the building! He is in denial about his short term memory. But that appointment may help us discover if he officially has Alzheimer's or some other form of dementia. Will he tell me to go home when he sees that? I will prepare him so he knows where we are going, however. Don't like to manipulate him. Want to keep that trust of me operative.

You see, folks, so far he trusts me and I aim to keep it that way. It's just hard to boss my husband around (doesn't seem biblical to me), but I take heart that I am his biblical helpmate.

Quotes and Comments One

• The aging process is a part of most of our lives, and it remains one we try to ignore until it seems to pounce upon us. ~~ M.F.K Fisher

My husband and I keep talking about slowing down, not being able to do as much. This hasn't pounced on me yet. I still think I need to do a lot because he does less. However, I enjoy sitting by his side on my little notebook computer while he watches TV movies and I half listen. Being with him is so important. I realize from the training I am getting that it calms him down, helps him be less anxious.

This week I went to my third monthly caregiver's group. I learned that being a caregiver to an Alzheimer's loved-one is the hardest disease to be a caregiver for. I learned also that families react very differently when the loved-one has Alzheimer's: some are doers and some are talkers and some just don't know what to do or say. Also there are other family dynamics that will play out.

• The stresses of a former marriage continue to have impact on the new marriage as well. . . . When there has been a divorce and a remarriage, the counselor first must be sure that any wrongs committed in the transaction are righted before God and all parties involved.~~ Jay E. Adams

When an ex-wife of my husband told me over lunch that she was the better parent, I contacted his adult children and let them know that if they have issues with my husband, they need to discuss it with him while he has memory. Hopefully confession and forgiveness can take place as Dr. Adams suggests. Ira Byock in Four Things That Matter Most says people while they can need to communicate: 1) I love you; 2) thank you; 3) please forgive me; 4) I forgive you. I trust that process is happening.

• Worry is the sin of distrusting the promise and providence of God, and yet it is a sin that Christians commit perhaps more frequently than any other.~~ John MacArthur

I must confess that I worry. I thank God that yesterday when I started to worry, a friend chatted with me on Facebook and that calmed me down. How can I trust God? Faith comes by hearing and hearing by the Word of God.  Here are some of my favorite verses I have been meditating on lately for direction and peace:

Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Philippians 4:4-7) Love suffers long and is kind . . . does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things endures all things. Love never fails. (I Corinthians 13) The heart of her husband safely trusts her. (Proverbs 31:11)

Prayer and supplication have been the subjects of sermons at our church recently and with turning over my requests to God I have the best chance at His peace. I have been asking our Lord to guide me as I have on more responsibilities, to let my husband continue to trust me and to help my love for him be constant in these senior years. Lord, I bring before You my prayers and supplications for events this month.

Challenges in August

I heard at a support group that sundowners is a symptom of Alheimer's. Our loved one gets angry/agitated in the afternoons at sundown. My husband recently has shown what may be sundowners. He is angry. He tells me to fire the plumber and get a new one. He wants to go out and buy something we don't need. I countered him on both suggestions. Later he doesn't remember the incidents. To act as a good helpmate as a wife is to act in the best interest.

This month he goes to the urologist to see if he might have prostate cancer--glad we are checking this. My father had prostate cancer and caught early surgery cured it. Friday, August 13, he will have a biopsy.

A week later he is being evaluated by a neurologist at an Alzheimer's institute to see what kind of dementia he has. He may qualify for a research study then.

The other challenge this summer is that we have less income until I can substitute teach in the fall. When I have to stay home with my sweetheart all the time finances indeed will be even tighter. But I am not borrowing challenges down the road. August is enough.

Joni Eareckson Tada said: “I want to stay in the habit of 'glancing' at my problems and 'gazing' at my Lord.” Let me gaze daily on You, Lord.

Alzheimer's Reading Room Quotes Post One

Bob DeMarco writes the Alzheimer's Reading Room. See link at right.  Bob is taking care of his 94 year old mother.  Here are some of his quotes and that of others from his Reading Room.

• I am saddened when I hear these words --this is not the person I knew -- because those words objectify the person suffering from Alzheimer's. When you objectify a person you also dehumanize them. Once dehumanized the person becomes a villain.
• My mother is still the same person I have known all my life.  She suffers from Alzheimer's disease.  Her brain sends her the wrong signal quite often. Its up to me to let her use my brain.When necessary.....
• Dotty and I would start living our lives as we always had. It took me at least two years of Alzheimer's caregiving to figure out that we needed to start living our life the way we always had. I knew we had to do something or the end was going to come sooner rather then later. Either Dotty was going to drop off the edge of a cliff, or I was going to jump off the edge of a cliff.
• Carol Blackwell quotes someone else in a Reading Room article. “If you face a difficult situation, you have two choices. You can change the situation or, if you can’t do that, you must change yourself to meet the situation.”
• Tom and Karen Brenner are quoted: Pay attention; look at the faces of the people you love, listen to the music of your life, feel the wind on your face, taste the ice cream. These moments are like jewels, strung on the necklace of time. If we lose these small jewels of life, we lose ourselves.
• Barbara Pursley writes about taking care of her mom who has Alzheimer's:  The essence of my being is constantly changing from happy to sad, from mental order to disorder, from freedom to chaos, from physical energy to fatigue, from hope to hopelessness, from my life to her life to our life. I know people mean well when they say, “Don’t forget you have to have a life of your own, aside from your mom, but maybe what I’d prefer to hear is “I know how difficult it must be caring for your mom and meeting your own needs too, so if there is anything I can do to lessen your burden, please let me know.”

Dear Lord, We are letting You know. Please be with and bless these people who write on the Alzheimer's Reading Room and help them with their challenges.  Thank you that I am learning to bless my husband and enjoy the simple life we have together. Help me to not whine, but to trust You for the challenges ahead this month. Thank you that the expert plumbers are here. Amen.