Book List

“Living With Dementia – A Caregiver’s Journey”

 https://www.createspace.com/4021320    $12.99

In this book I share my good and not so good experiences in ten years of caring for my wife.  Dr. Charles Driscoll of Lynchburg, who heads a support group, complimented this book by referring to most written from a clinical perspective while mine is from a personal point of view.

 

NEW!  “In My Father’s Service: (From Bastard To Bishop) CreateSpace eStore:  https://www.createspace.com/3948644 Autobiography  –  $13.95

The story of my life from conception to retirement; the churches I served, the work of Barnabas Ministries, Inc. and my service as Bishop in The Charismatic Episcopal Church.

 ”Understanding Revelation”:  $12.99

CreateSpace eStore: https://www.createspace.com/3830807

 A commentary on the last book of the Bible making this easy to  understand and interpret.

Non nobis Domine! – Story of Convergence Movement and CEC https://www.createspace.com/3728372   $10.00

The story of the Convergence Movement, important teaching related to this movement and its place in The International Communion Of The Charismatic Episcopal Church.  This is a book that will serve well in giving to inquirers, new members as well as those who have been with CEC from the beginning.

The Gift That Keeps On Giving   (Gifts and Ministry of the Holy Spirit) https://www.createspace.com/3766299   $12.99

Can you be used by the Holy Spirit in building up the Body of Christ?  This book deals with the gifts and ministries of the Holy Spirit and how they work in the lives of believers.  Personal examples are often reported in these gifts and ministries.

NEW — “The Sacraments” of the Christian Church https://www.createspace.com/3979745     $10.99

By clicking the URL or cut-and-paste the link in your browser, you will be taken to a secure web site from which purchases may be made with your credit card.

Friday, August 10 Hospice’s Decision

I had been warned several months ago that Hospice was considering “graduating” June and removing her from their program, however, some things changed in June’s condition and the Nurse Practitioner who evaluates for Medicare continued her.  She does this evaluation every two months.  Last Monday the regular nurse who comes weekly informed me the “TEAM” had decided the previous week to “graduate” June.  An hour later the NP arrived for her evaluation appointment totally unaware of the decision.

I have been in contact with the Social Worker in charge of our case and she is arranging a meeting Monday or Tuesday afternoon next week when I can meet with the Team and make my appeal.  I do not fault Hospice for their decision because they are following Medicare guidelines without any choice, even though their guidelines fail to take into consideration such things as mental conditions and some physical not part of their criteria.  It is like when I had to pay out-of-pocket for a lift chair even though our Family Physician ordered the chair due to June’s inability to get up on her own, but Medicare declined payment because they cover such purchases only if the patient is arthritic.  Dementia is not part of their consideration.  I do fault Hospice for discussing June’s case and making their decision without involving me as her caregiver and spouse.  I experience things with June that the nurse or NP do not.  They are with her for a half hour or so once a week; I am with her 24/7.  The guidelines fail to consider her sleepless nights, her terrifying screams some nights, the sudden shift from happiness to fearfulness, some of the physical and biological problems she has.  They measure her arm and determine if she has lost weight.  No, I feed her too good, and she is unable to exercise.  Medicare wants me to starve her.

I do not know the Lord’s will or time for her.  I received word this morning that one of the men on my support list lost his wife yesterday to Alzheimer Disease.  She had been diagnosed lesser years than June.  I am told that our good home care is a factor that has kept June alive.  I do have two excellent Care Providers.  Where Hospice has borne much of the expense of medicines, diapers, pads, lotions, now I will need to pay.  If I have an emergency I will need to call the Rescue Squad to transport her to the hospital which is an added cost.  But we do what we have to do.

I thank you for our prayers and concern.  I don’t have much hope that my meeting with the “Team” next week will change things but I will get off my chest my feelings and hopefully, in the future they will be more considerate by including caregivers and family members when they make these decisions.

Follow Up To Yesterday’s Bad Day

Thanks to all who have left comments or sent personal emails to my posting last evening regarding Hospice “graduating” June.  “Graduation” means they will no longer give her home care.

I do not fault Hospice for this decision.  They have been our only help.   It is regulated by Medicare which is government run and Washington bureaucrats determine what constitutes care.  It is such things as physical measurements of her arms, weight loss, level of consciousness by which they determine if they will continue to pay for her care.  They do not take into consideration the impact upon family caregivers, bodily functions, screams in the middle of the night, sleep disorders, affect of the dementia on her mind, inability to function, and long term affect from seizures.  All of these are part of the history and current situation with June.  My one fault with Hospice is that some “committee” makes decisions regarding their service without consulting the family, or in our case, without even informing the Nurse Practitioner who examines June and determines if she qualifies to continue in their service.  Discharging June is the second such decision this “committee” has made regarding her care.  The NP arrived yesterday for her evaluation and had not been informed they had already determined to discontinue the service.  She was on the phone with some people interceding for us but to no avail.

I can appeal to Medicare.  Anyone wishing to join me in this futile pursuit?  I still have my two very capable Care Providers (Ms Farmer and Ms Rush) from 8 a.m. to 8:30 p.m. daily.  As the NP said I am being punished by Medicare for giving June good personal care.  They expected her to die before now.  Perhaps this is a preview of future government health care for seniors.

My problem for the future is there will be no one whom I can rely on were there be an emergency such as we have had in the past: – June seizure or stroke last year; the 3 inch deep cut she had on her arm one night.  In both instances Hospice came within 15 minutes after I called them.  It takes a half hour or more for the volunteer Rescue Squad to arrive at our house after I call 911.  All they can do is transport her to the ER at Lynchburg General Hospital which has happened twice before Hospice started.  We live in Bedford County.   The city of Lynchburg has paid Emergency Service people at the fire department three miles from our house but because we are in the county they are not sent.  Hospice nurses can do what the ER does unless x-rays or blood analysis be needed.  Hospice provided (through Medicare) June’s diapers, lotions, and medicines, which now I will need to purchase out-of-pocket.

Last night June slept.  Were she still constipated this morning, a Hospice nurse would come to give her another enema.  She had two yesterday, but the nurse will not need to come; nature took its course during the night.  I was awake at 2:45 a.m. and finally  went back to sleep about 5:30 a.m. for a brief time.  She was smiling this morning and trying to tell us things as Ms Farmer and I walked her from the bed to the Den.  I know God is in control of our lives but I doubt any attention is given to Him by Washington politicians who set the guidelines for government healthcare.

One Of My Worse Days

The day began good.  June had been restless through the night and I removed her pillow for fear she was going to get it over her head.  Later her adjustment in the bed made it possible to give her back the pillow for her head.  She slept through the night but this morning after breakfast she was quiet and slept more.  For almost a week she has had constipation problems which my care providers and the Hospice nurse along with laxatives we have tried to resolve.  This no doubt has contributed to her discomfort.

But these things we take in stride and handle as the need occurs the best we can.  Later in the day I was called by the Nurse Practitioner who every two months does a Medicare evaluation.  She was coming at 3 p.m.  Soon after lunch the regular nurse called and asked about coming to which I was glad because I hoped she would be able to take care of June in a special way to relieve her of her discomfort.  When she arrived I was informed that the Hospice Committee (whoever they are) has decided to “graduate” June next week.  This means Hospice will no longer attend to June or be available to assist me in her care.  Of course if she gets worse they can be called in to do another assessment and decide if they will restore her to Hospice Care.

I am devastated by this decision being made without even consulting me.  They seem to do this readily, failing to take into consideration what the family care provider experiences 24/7.  Hospice has been my ONLY help.  Now if June takes a turn for the worse, or something happens in the night, I must call the Rescue Squad to take her to the hospital.  It takes a half hour for the ambulance to reach our house.  That’s free but the ER cost after Medicare and Insurance costs several hundred dollars, depending on what they do.  If something happens after my Care Provider leaves at 8:30 p.m. I am totally alone with no help.  This means also I start again paying for her medicines, diapers, and other things needed in home care.

The Nurse Practitioner explained that Medicare in effect is punishing me for taking such good care of her.  They don’t expect her to live as long as she has.  How comforting!

Saturday, August 4

This week is now almost history.  It started last Sunday with me in hospital because of a stomach virus.  Until yesterday I lived on chicken noodle soup.  It has been hot and dry until a marvelous rain storm last evening.  Thanks to Ms Farmer and Ms Rush, our Care Providers, June has had a good week with exception of one night when she slept only a few hours and spent the rest of the hours singing and talking with occasional blood curdling screams.  Definitely there are increasing signs that the Lewy Body Dementia (or Alzheimer Disease) has affected her mind.  There are occasional times when she looks at me with a blank stare and glazed eyes, and other times when her smile can turn the coldest heart to glow.  This photo was taken Monday evening as we sat on the sofa and I get that inquisitive look from her.  Usually I am up several times during the night to cover her or check on her.  The LBD causes uncontrollable jerks of her body, and I will stand at her bedside watching to see if a jerk shows me she is still alive.

I seem to be over my virus.  I have no idea what it was or how I contracted it, but it was indeed a pain in the belly.  My revision, editing, and additional data has been updated in my biography under a new title: “In My Father’s Service (From Bastard To Bishop) and is available for $13.95 by clicking this link and ordering from Create Space https://www.createspace.com/3948644.  Other books that are available:

“A Long Dark Night —  A Caregiver’s Journey With Dementia”  My story of the good and bad experiences in dealing with June’s illness, and recommended for anyone needing or wanting to know about Alzheimer Disease or Lewy Body Dementia.  https://www.createspace.com/3699557   $12.99

“Understanding Revelation”:  https://www.createspace.com/3830807  $12.99
“The Gift That Keeps On Giving”   (Gifts and Ministry of the Holy Spirit) https://www.createspace.com/3766299   $12.99

“Non nobis Domine! – Story of Convergence Movement and The Charismatic Episcopal Church”  https://www.createspace.com/3728372   $10.00  (This 201 pages book is priced low so churches can purchase in quantity to give to new members and others wanting information about our Communion. It is also recommended for use in Confirmation instructions.)

I encourage ordering via these links because the royalty is larger than when orders are placed through Amazon.com.  Your purchases assist me in my home caring for June. I pray you have a good weekend and next week will bring multitudes of blessings.

Sunday, July 22

 I was blessed to be able to attend the Convocation of my Charismatic Episcopal Church held July 10-12 in Madrid.  It was a spiritual shot in the arm, and full of surprises and unexpected events.  Among which was the Patriarch’s Honor bestowed on 14 people from the worldwide Communion.  Some of you have already read about this due to an earlier email.   The Convocation published a souvenir magazine in which he wrote, “… continue to live in Him  (Colossians 2: 6 NIV).

            “It has been said that longevity is one of the keys to greatness – continuing, finishing the work the Lord has given you to do.  We admire people who continue in the Lord and are not caught up in the fads that come and go.  Bishop Weeks is such a man.

             “Many things can be stated about his ministry, the churches he has pastured, his mission trips to Africa and the Philippines, and the books he has written.  He has been willing to go where others merely read about, impacting lives around the world.

            “However, life has a way of testing one’s ministry.  His greatest ministry has come out of suffering.  His wife June has required Bp. Weeks’ daily support due to prolonged illness.  Nevertheless, he has continued to stand by her side ministering to her and through all these, ministering to others on his blog and writing a book about the season of their lives.  He has become a symbol of the sacredness of all of life!

           ‘When things get tough many do not keep commitments or vows.  They do not continue.  Today we honor a man who has CONTINUED to stand faithfully in ministry to his wife and the church.  This speaks louder than all else we can say about him.  We are inspired to go forth and do likewise.

           “Thank you Bishop Weeks for continuing in a half-hearted age, you have determined to continue and live in Him.”

 Some months ago I published my autobiography under the title “The Miter”.  Perhaps the title was insufficient to explain what it was about and sales were not good.  I wanted to add some things to it, including the Patriarch’s Honor, so with the help of Len Rogers proof reading the original manuscript, and adding some additional things I am ready to republish under a different title.  Once it is available for purchase I will let you know.
Barnabas Ministries, Inc. will close the end of September, marking 32 years of mission support to the Body of Christ.  I praise God for all the wonderful things our supporters made possible through BMI.  With the closure of the ministry, our main email address will also change.  You may make the change now in your directory to bishopweeks@gmail.com and start using it any time.  By the end of 2012 it will no longer be active.
June continues under Hospice care.  There have been some changes in her sleep pattern.  I believe at times she is in the “spirit world” which is not accessible to us.  Recently one word we understood in her speech was the name of her sister with whom she lived when we met and who died six years ago.  She sits and talks in a language we do not understand, and at times reaches out as if to be touching someone.  She seems to be in no pain and at peace.  She delights in visitors even though she may not know them,  I guess it is joyful to her to see some people other than I and our care providers all the time.  Have a blessed week.

I’m Home

Finally, after three Delta commuter flight cancellations I made it home at 1:50 a.m. Saturday, and oh did my bed feel good.  Daughter Gail and sister Charlotte met me in Roanoke at the airport after hours of delay.  Saturday morning I helped fix June her breakfast (getting back in the routine) and soon after she ate I returned to the bed for a couple of hours of sleep.

The Convocation in Madrid SPAIN was fantastic.  The teachings and sermons were inspirational, and the worship beyond words.  I told several of the Filipinos that only they really know how to worship God.  The music, liturgical dance, incense, Holy Communion; everything was great.  With my iPAD I was able to video some of the evening services.  Here is a photo of the Bishops who came from all over the world:: Europe, USA, Philippines, Brazil, Africa.  It was great to see some with whom I had worked over the years, and to meet new men consecrated since my retirement.

Daughter Gail took vacation to stay with June making it possible for me to attend.  Twice a day I used Skype and called home on my iPAD.  It did not compare to this morning when June saw me face-to-face, attempting to say things but not understood.  I was surprised by a special Honor from the Patriarch.  I was one of fourteen recognized for our work worldwide  in the Charismatic Episcopal Church.

Next week I will catch up the mail, and possibly another blog with some photos from the Convocation.  For now, I am home, recovering from jet lag and flight delays, and holding hands with June and playing with Boots (our dog) who incidentally was joyous in my arrival this morning and slept close to me during the few remaining hours of the night.

Storm Update July 3

Some of you already know this.  Last Friday night about 9:25 p.m. a violent storm passed through West Virginia and Virginia knocking down trees, and putting millions out of electricity.  Our power was restored Monday at 2:15 p.m.  We did not have as much as a fan to cool us.  I used a newspaper waving it over June to make her a little more comfortable.  Fortunately the Den and downstairs bedroom are cooler than upstairs.  My yard looked like a disaster zone with tree limbs all over the place.  Today my Yard Man has almost finished removing the stuff.  We lost all our food in the refrigerator and freezer.  This morning I replenished a lot of the food at the tune of $178.00 at Krogers.  There still are other things I need to buy later this week.

Except for waking up about 3 a.m. and singing, June has been doing well.  She has some cough but I think it is allergy, and possibly the heat.  My back continues to hurt, and lifting ice bags yesterday didn’t help it any.  Thomas Road Baptist Church gave away 20 pound bags of ice, a case of Gatoraid, and a case of bottled water; the only church in Lynchburg to assist at this time of need.  They opened their church as a cooling station and medical relief area staffed by medical personnel from Centra Health relieving some pressure on the ER at the hospital.  They were able to sleep 600 people.  Thousands of people were without air condition just as we, but June’s condition does not allow us to take her from the house to other locations.  We had to do the best we could right here at home.  This morning I had to go to Virginia Baptist Hospital Pharmacy to get June’s medicines and that area of the city is worse than my yard.  One elderly couple had their house split in half by a fallen oak tree.  And still many people are without power.

Ms Farmer and Ms Rush continue to provide excellent care to June.  Hospice has re-instated her, and another evaluation will be made in early August.  Daughter Gail will come Saturday to stay with June while I attend our church’s Convocation next week.  I feel more peaceful with her (an RN) being with June at night.

Have a blessed FOURTH OF JULY.

Monday, June 25

We have had a good weekend.  Sunday a week ago we talked about taking June to church but circumstances intervened and we did not.  It was a “Lord’s move” I believe, because totally unexpected and not normal, the Hospice nurse came to the house at 10:30 that Sunday morning to do an evaluation on June.  Had she been with us at Church it may have affected their decision in retaining her for their service.  If she is transportable for Church, she would be transportable to the doctor or ER.  Two days later the Nurse Practitioner did her evaluation and all seems favorable that June will stay in the program.  A change in her sleep pattern, allergic symptoms and increased incontinence figured into their decision.

The photo was taken last Friday night by Hugh Kaiser who is visiting us.  Saturday and yesterday we were able to get June to the kitchen table for dinner.  Little things like that seem to mean much to her.  How much she understands or how much she is aware is uncertain.  But almost each morning she awakens with a smile on her face, and she talks in her strange language a lot.  Hugh carried on a conversation with her with his “speaking in tongues” and she responded in her “tongues” as if understanding everything being spoken.  I think June is at times in a “spirit world” different from our abode.  I have often said that I believe the “spirit world” is one inch beyond our finger tip and what seems to be happening with June confirms that.  Several days ago one of our Care Providers said June spoke the name “Georgie” as she was talking.  That was the name of her elder sister with whom June lived when we met, and who died in 2006.

Hugh will leave for DC Wednesday afternoon.  We have enjoyed his visit, recalling some of the experiences over the years he and I worked together in the Philippines.  He is now doing mission work in Indonesia.  I pray you have a blessed week, and thank you for your thoughts and prayers concerning us.

Monday, June 18

The past several weeks have been hectic.  First June slept for over 48 hours.  We could not awaken her.  She would open her mouth when her lips were touched with food but not her eyes.  I called Hospice and the nurse came and could not get her to wake up.  A few nights later she stayed awake until 3 a.m.  Radical change in her sleep pattern. She has been coughing, sneezing and spitting up which may be a cold or it could be allergies.  Her regular nurse came yesterday to do her evaluation and next month the nurse who must re-certify her for Medicare will do another evaluation.  Hopefully she will be retained for Hospice care.  It will be very difficult and costly without Hospice, having to use the Rescue Squad for transport and the ER for medical assistance if needed.

I went to St Mark’s Episcopal Church in Clifford VA (near Amherst) yesterday.  Len and Barbara Rogers joined me.  This church has been very supportive of June with the parish nurse regularly sending her a greeting card, and twice the church has helped financially with my care provider costs.

Hugh Kaiser, my long time associate in Barnabas Ministries, will arrive Thursday for a week long visit.  I look forward to his coming and anticipate a lot of fun things to do together.  The Orthopedic office phoned last week and wanted to refer me to a spine doctor rather than a third epidural.  I told them I would think about it.  I have no desire to go to a spine doctor who most likely will want to put me under the knife.  I will take my pain pills as needed.

I pray you have a blessed week and I thank God for the approaching summer season.

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