Share Share this page

Heart Wrenching Decisions for Loving Caregivers and Family

© - 2013 Stanton O. Berg

 June 1998

(June - San Francisco - February 1998)

Following the initial crushing decision to admit a loved one into an Alzheimer’s nursing facility are the later decisions that a caregiver or family member must make... These are the decisions that will all impact the end of life of their loved one with Alzheimer’s or other terminal dementia disease.

This discussion covers the three most common such decisions that must later follow the admission decision…Decisions for

(1.) “End of Life” Hospice or Palliative care. 

(2.) CPR - Cardiopulmonary Resuscitation.

(3.) Artificial Hydration and Feeding - Intubation. (Force Feeding)

June entered an Alzheimer’s care facility on 16 March 2005 (9th year) and died in such a facility on 23 October 2008. This was a 12 year journey for June through the darkness of Alzheimer’s that had it’s origin with her first symptoms in 1997. During this 12 year journey June and I faced all of the heart wrenching decisions that accompany this disease…this discussion cover’s decisions on Hospice and Palliative Care, CPR and Intubation decisions.

 Hospice and Palliative Care

When the end of life draws near for Alzheimer’s victims, assistance and care can be secured from the federally administered and funded “Hospice” programs. They provide end of life and “Palliative” care. This end of life care option is available both in the private home as well as in a nursing facility. Hospice is a part of the Federal Medicare program.

To be eligible to elect the hospice benefit under Medicare, the beneficiary  must be entitled to Part A of the Medicare benefit and be certified by a physician  as terminally ill. A beneficiary is considered to be terminally ill if the  medical prognosis for life expectancy is six months or less if the illness  runs its normal course

There are a great many approved Hospice providers and listings in your local area and can readily be obtained by online searches or simply by consulting the local yellow pages or similar directories…the attending doctor would be able to make recommendations for a suitable provider. I live in the Minneapolis-St. Paul metropolitan area and the local yellow pages lists more than a dozen hospice service agencies.

The attending doctor is also the key to qualifying for Hospice care…The core requirement is that the attending doctor certifies that in his opinion the person with the terminal illness has six (6) months or less to live.

Such decisions are sometimes difficult in the cases of Alzheimer’s and other long term dementia type terminal illnesses. It is not unusual for someone with Alzheimer’s to be certified for Hospice care and live much beyond the qualifying 6 months period of time…if the end time still appears imminent, the doctor can re-certify for another 3 months period. Sometimes because of the slow changes found in Alzheimer’s, the patient may be removed from the program if it appears to the doctor that their symptoms have plateaued for a time…when and if that happens they are said to have "graduated" from the Hospice program…they can later be readmitted to the program when the end time again becomes imminent.

June Wellstead 11/2005Discussion: I think the Federal Hospice program is a very good and caring program from the standpoint that it provides much personal care and family assistance directed towards the comfort of the patient…It not only assists with the personal care of the Alzheimer's patient such as feeding and and bathing and personal comfort, but it also has a music and a spiritual component with staff Chaplains. June was on Hospice with Twin Cities Hospice. We were pleased with the individual performance of the members of this group. It is however not a well designed program for Alzheimer’s and other similar long term and dementia type illnesses. (It is a great program for cancer.)

The problem revolves around the requirement for the prediction of the remaining life of the Alzheimer’s patient. One of their rules of thumb is the 10 percent weight loss rule...this rule is said to predict the coming end times for the patient. June had lost 10 percent of her weight at the first Alzheimer's facility she had entered. (The Wellstead of Rogers.) I tried to tell them that June's weight loss was not a prediction of her end time but rather the incompetence of the Wellstead staff in feeding June. It turned out I was right and the Wellstead was wrong. June lived another 2.5 years after moving her to the Benedictine Health Care Center in New Brighton.

I have called the program a “train wreck” in this regard as applied to Alzheimer's and other dementia diseases…June was placed on the program when a doctor predicted she had less then 6 months to live…This decision was in a large part because of June's 10 percent weight loss and the difficulty in getting June to take food. As indicated above, June did not die in six months and in fact she lived for another 2.5 years…(She later added back her initial weight loss when competent personnel were involved in the feeding process.) June received one three month extension and then was removed or graduated from the program…we were told that she could again be readmitted to the program when a doctor again decided that June’s end was imminent…unfortunately, as often is the case with Alzheimer’s, June’s last days came rapidly and she died before the necessary readmission procedures could be applied or completed. June died from Aspiration pneumonia, a common cause of death in Alzheimer’s…I have seen other victims of Alzheimer’s that were also admitted to the program only to be removed when they did not die as required and to then eventually pass on while not on the program. While the care and comfort provided by the program is great, it can be a frustrating program when a loved one that obviously is terminal and dying is removed from the program because it is poorly designed for Alzheimer's. There is also some waste in funding the program...For example, when June was on the program, Hospice was paid for some feeding and bathing operations that were already included in the overall charges of the Benedictine...this resulted in duplicate payments for the same services.

When a patient is removed from the Hospice program it also means the removal of the special equipment they were provided…such as special adjustable beds and special chairs…This is silly beyond belief…certainly if such comfort equipment was needed at the start of the Hospice period of care and comfort, it is still or more so needed when they are removed from the program…their health and well being has not improved and such comfort items are very much needed…June had a special adjustable bed…the nursing home involved simply replaced the removed bed with an equally comfortable adjustable bed that was a part of their on hand equipment…June also had a Geri Chair that was removed…these chairs are great items of equipment…they are much like a relax-a-lounger on wheels…I went to the nursing home administrator and offered to pay for the purchase of a new Geri-Chair for June and then donate it to the nursing home when June passed on and no longer needed it. The administrator did order such a replacement chair for June’s use for the remainder of her life at the nursing home…she did not require reimbursement from me…so in the situation of the removed two pieces of equipment, they were replaced with equally good equipment…”All's well that ends well.”

In addition, Hospice program pays for any additional drugs used in the care and comfort of the patient. However, when a person is removed from the program, Hospice will no longer pay for such additional drugs that were added for the care and comfort of the patient...added as a part of the Hospice program. Another one of those things that makes no sense at all. The Alzheimer's patient never improves and is always one step closer to death but Hospsice is blind to this fact if the patient does not continue to meet the Hospice continued care qualifications.

The Federal Hospice program needs to be analyzed and redesigned for the special needs of the Alzheimer’s victims and families. The medical establishment needs to understand that Alzheimer’s is a terminal disease from which no one has ever recovered and that while the victim may appear to have plateaued, the brain (neurons) is/are still dying and the victim continues to relentlessly suffer a continuous decline until his or her last day.

---

The AARP Bulletin for November 2015 sums up the goals of the program..."Pain management in hospice is to enable you to live well and not to sedate you...the desired result is to have one live longer during the last remaining days of one's life and to enrich and some times salvage the last stage of life..."

---

 CPR and Artificial Hydration or FeedingJune and Stan in Holy Spirit Chapel

The family and caregivers are often asked to make other heart wrenching decisions concerning the care of their Alzheimer’s terminally ill loved one…

These are the decisions that relate to CPR and or Artificial Hydration and Feeding.

These are decisions that can only be made individually by each family in consultation with the attending doctors. I do not attempt to make any specific case or care  recommendations!

I can only tell you how I made my treatment decisions for June and the reasons that I made the decisions that I did.

Generally Hospice recommends that the emphasis be focused on the comfort care of the patient and not on life prolonging measures for a terminally ill patient thought to be in the last 6 months of their life.  I agree. Extending life when there is no quality in that life and only misery makes no sense to me.

In making my decisions, I studied a Hospice manual that outlined and detailed what is involved in such decisions and the impact on the terminally ill patient. I also did independent research. In addition I consulted with my daughter Julie who has been a caregiver in a nursing home for 35 years…she has the experience and has personally observed attempts to prolong life by these procedures…

 CPR

CPR stands for Cardiopulmonary Resuscitation. CPR is the procedure used when a person’s heart stops and breathing stops…emergency rescue people are trained in the procedures that may restart the heart and restore breathing. The rescuer attempts to restart the heart by application of strong force and downward pressure of the hands on the chest, which has the affect of compressing the heart. They may also breath into the victim’s mouth to fill the lungs with air. Electric shock to the heart may also be utilized. This procedure is standard in Hospitals and nursing homes unless there is a written order to the contrary. (Order of the patient, his or her doctor or someone with medical power of attorney for the patient.)

Such an order or instructions to the contrary may be called DNR (do not resuscitate) or “No Code”. Without such an order or instructions, CPR is the standard order of procedure.

Studies over a period of 30+ years was reported in Medicine, 74: 163-175, 1995 and indicates that the survival rates for CPR on over 26,000 patients is at an overall average of 15.2 percent. Most survivors were otherwise generally healthy people with the cardiac or respiratory arrest their only medical problem.

However, the statistics for those who had a terminal disease and those who were not living independently but were dependent on others for care such as in a nursing home, had a survival rate of less then 2 percent.

There are also special risks involved with the use of CPR and in particular when used on the elderly…the frail elderly person may sustain fractures to their ribs and the spleen or lung punctured as a result of the force involved on the ribs by the procedure. My daughter Julie verified that this procedure can easily result in rib fractures to the elderly.

The idea of June suffering injury and rib fractures, horrified me…the advanced stage Alzheimer’s patients do not understand what is happening to them…they live with fear as a part of their daily lives.

It has been said the CPR also dramatically reduces the likelihood of a peaceful death for the terminally ill Alzheimer’s victim.

Hospice does not recommend CPR but is guided by the decision of the family or patients own medical directive.

I had no problem with having June’s medical file marked with DNR for “do not resuscitate”. My daughter Julie also agreed and totally understood my decision. I did not want to see her suffering and fear prolonged.

 Artificial Hydration or FeedingJune and Stan Benedictine

When the Alzheimer’s victim either can no longer take food or fluid by the mouth or refuses such food or fluid, a feeding tube may be an alternative way of providing such food or fluids.

Such a feeding procedue is called "Intubation."  This is a form of "Force Feeding". Two common methods are:

A “Nasogastric” (NG) can be inserted in the nose and down the esophagus and into the stomach. An alternative method is “Gastrostomy” in which a tube is inserted through the stomach wall by surgery. Liquid foods, nutrients, water and medications can be poured into the stomach via the tubes.

Feeding tubes are not without risk…displaced feeding tubes may be the cause of pneumonia…regurgitated fluid may enter the lungs...feeding tubes may also cause ulcers and infections…

The Alzheimer’s victim may have decided to terminate his or her own life by simply shutting down and accepting no food or drink…the feeding tubes override any such choice by the patient or victim.

Feeding tubes are not considered necessary for pain control. The Alzheimer’s patient can always be given pain medication, oxygen or any other procedures necessary to provide comfort in the end times. (Injections or suppositories can also be used.) Any symptoms of dry mouth and or a sense of thirst can both be alleviated with good mouth care, ice chips or sips of water and are not necessarily relieved by artificial hydration.

It is said that there is a “natural release of pain relieving chemicals as the body dehydrates"…it has been described as “mild euphoria”. This is a state that comes with no food intake that also suppresses appetite and causes a sense of well being.”

Numerous studies of over 30 years on Alzheimer’s and dementia type patients has concluded that “tube feeding of advanced dementia patients offered no benefit and even caused some harm”.  (JAMA  282 (14): 1365-1370, 13 October 1999)

Hospice does not recommend Intubation but is guided by the wishes of the family or by the patients own medical directive.

The UN Human Rights Commission said it regards force-feeding of prisoners as a form of torture and the World Medical Association specifically prohibited force-feeding in its Declaration of The Tokyo Accord for similar situations. The Nasogastric method was the common method of doing this. Why would we then consider this a proper procedure for elderly dementia disease terminal patients.

I could not tolerate the idea of a feeding tube being inserted into June either through the nose or through the stomach wall…the Alzheimer’s patient at this point is in advanced stages and lives in daily fear…they recognize no one…every time they open their eyes it is to an alien world in which no one is recognizable...they do not know if they will be harmed by the persons they see…These procedures certainly inflict pain and discomfort…to have June’s normal Alzheimer’s fear increased and her comfort levels reduced by these procedures would be more then I could psychologically tolerate or handle.

When I gave the order for “NO INTUBATION’ (Force Feeding) of June, my daughter Julie said she was happy with my decision.

 ---

Note: There may be Religious and ethical implications to some of these considerations that may require the caregiver or family consult with their own church leader or pastor.

In this regard I have asked the opinion of Dr. David Glesne, the senior pastor of our Redeemer Lutheran Church here in Fridley, Minnesota. This is the church that June was a member of for over 50 years...Pastor Glesne was June's Senior Pastor at the time of her death.

Pastor Dave Glesne"Stan, You have done good research and have thought through this matter of CPR and Intubation procedures.  From a Christian perspective, I do not think that we need to unnecessarily prolong death.  There comes a point in attending to a terminal person  when we move from nurturing and sustaining life and prolonging death.  I do not think we need to prolong death.  That point or line between the two may be difficult to determine, but it is something the family and physician (not an ethics panel) need to determine. 

Intubation is a harder one for me.   I think it is problematic to actively and intentionally withhold  nutrients and food and water from a person but if a person willfully refuses nutrients and if diligent efforts are made to provide nutrients that are only prolonging death, I think a case can be made for not providing nutrients (by intubation) in those cases. 

I admire the work and thought in this area – an obviously - are influencing the lives of many who are reading your website.  Blessings,   Pastor Dave."

 ---

For those readers that are interested in the decision made by our family to place June in an Alzheimer's care facility in March of 2005, please click on the below link to access the story on this website...a very sad time in our family and the start of one of the worst periods of time in my life:

 "The Alzheimer's Nursing Home Decision for a Love One"

 

---

 AARP Bulletin for November 2015

AARP Bulletin outlines some guidelines to consider in Choosing Hospice Care…

1.. Is the Hospice Accredited…”Hospices aren’t required to be certified or accredited but those that do are making a special commitment to quality care.

2.  Has the hospice been surveyed/inspected by a state of federal oversight organization…if it was when and what were the results…

3.  Is the Medical Director board certified…while this is not required, it is an additional assurance of training, experience and quality…

4.  How many patients does the Hospice program care for…Those who are swerving at least 100 or more have more resources.

5.  What is the normal case load…a hospice nurse ideally should have no more then 12 patients to visit each day...

It was also noted that Hospice services continues after death…optional follow up grief support is available and included  for 12 months…bereavement counselors are available with support groups…

 ---

June and Stan 2007 

Photo Notes: - Top photo is June in San Francisco in February 1998 just one month after her official diagnosis as the result of short term memory problems that she has noticed in 1997. When she later asked her doctor of Geriatrics at her annual physical examination in December of 1997, he referred her to the University of Minnesota for a series of tests that resulted in the diagnosis of early stage Alzheimer's.  June was age 70 at that time. It was not until 2004 that the Alzheimer's started taking control of June...up to that point we had lived a relatively normal life with accommodations for June's short term memory problems...we enjoyed out 50th wedding anniversary on August 16th, 2002. The second photo above right was taken at the Wellstead of Rogers in November 2005 on June's 78th birthday celebration. It would be only three months later that the Wellstead medical staff would say that June should be on Hospice as she would be dead in 6 months...using the 10% weight loss as a guide.. I contended no, it was the Wellstead staff incompetence at feeding. June lived another 2.5 years after leaving the Wellstead and transferring to the Benedictine.The third photo top right was taken at the Benedictine Nursing home in late October 2007. June and I were in the Holy Spirit Chapel where we both had dosed off...June was in her 11th year of Alzheimer's and deep in the late stages of the disease. This was a very sad time. June was non responsive and sat with eyes closed most of the time. (Photo is by Jim Gehrz of Minneapolis Star-Tribune) The Fourth photo above right was also taken at the Benedictine Nursing Home in late October 2007. I am pushing June in her Geri-Chair on our way to the Holy Spirit Chapel. The Geri-Chair was a special chair provided when June was on Hospice...That chair was taken away when June was taken off of Hospice...this chair is the replacement chair purchased by the Benedictine Nursing Home. This photo also by Jim Gehrz. The bottom center photo is of June and my hands. This photo also taken late October 2007 by Jim Gehrz. This was almost our only way of communications. June did not speak so I held her hand much of the time...I would of course tell her many times that I loved her but she was non-responsive.

---

© - 2013 Stanton O. Berg

---

 For the story of June's last day and final hours, click on the below link:

June's Last Day and Final Hours

---

Reader's Comments

Terry Shepherd  - Warsaw, Indiana - (21 July 2013): "Thank you . I have had to make some of those heart wrenching decisions already and I didn't care for it." 

Mary Anne Lattin-Merrell  - Minneapolis, Minnesota - (21 July 2013): "Extremely helpful information....I refer people to this site regularly. These are tough decisions, but as I always say, "Just because you CAN do something, doesn't mean you should".

Minerva Ramos  - Wells, Maine - (21 July 2013): "Mr. O. Berg, thank you for always sharing the journey shared with your wife regarding Alzheimer's. I appreciate the selflessness exhibited in sharing your experiences."

Nancy Senechal  - Michigan - (21 July 2013):Oh my goodness, this article brought back so many awful dad memories for me.....I have tears in my eyes right now and I'm texting this...your children are fortunate to still have you...my dad followed my mom weeks after she passed, he was truly heartbroken...and I still am...this was too sad reading this, but I'm glad you shared your experience...you're a very compassionate loving person who has a beautiful bride...but in heaven now...God bless you Stan for all your caring and compassion...awful sad."

Amy Stiel Almas  -  Waterford, Michigan - (21 July 2013): "Such a great posting, Stan!  The decisions are difficult~ especially when there are more than one person involved.. There are 8 brothers and sisters in my family and my 84 year old Mother has informed me that I will be in charge of making the decisions since I have a medical background. I know from experience that this will cause rifts as we will not all agree and I would never want to see my decisions  tear the family apart as I have witnessed too many times...one thinks this and one thinks that and before you know it the family isn't speaking. Also, if you were a DNR at a skilled facility they would honor it only at that facility. The problem is that should a resident fall and be injured and taken to the ER that DNR is void until someone comes to the hospital to sign another DNR for that particular facility. Many disappointments of patients being intubated, getting feeding tubes, unnecessary tests and even physical therapy!... Hospice...They were an absolute blessing!!...My Mom kept my Dad at home~ as she had so much help with all of her children..at least one or two of us would stay at night for the last few years. He was only on hospice for the last 2 weeks. I doubt she would have even known about it if it weren't for the Alzheimer's care giver support group that she attended. I felt bad because I didn't know Hospice was even an option..." 

Marsha McKneely Ault  - Nacogdoches, Texas - (21 July 2013): "Forever love."

Donald Hiatt  - Clovis, California - (22 July 2013): "Thank you for sharing your journey.  I have a friend helping his mom with Alzheimer's, and you have greatly helped me to understand what they're facing, so I can be of support to them."

Dianne Cogar  - Springfield, Ohio - (22 July 2013): "Stan, This momentous path you lay out for caregivers to follow, in teaching us how to be helpful in situations as such, is so beautifully paved with understanding, compassion, support and more love than any I have ever seen. Ever since I have known you I have been steering others to Junes web site to learn from,  not only about the dark side of  Alzheimer, but also the bright side of Loves position of authority when caring for someone so utterly important in our lives. In my opinion, your words of intelligence on the matter are eminent beyond compare. Your research, your voice in it all, your devotion and your love... all this deserves the "wow" factor! Thank you so much...!

Jon Nichols  - Springfield, Virginia - (22 July 2013): "We were so fortunate that our father had the wisdom and foresight to prepare himself and us for what turned out to be a 10 year battle with Alzheimer's.  He was explicit in his direction and we followed it to the letter.  It was a tremendous gift in light of dire circumstances..."

Kat Schrack  - Bonita Springs, Florida - (22 July 2013): "Heart wrenching" are certainly the right words to describe those decisions.  My uncle was under hospice care and had described his wishes in his Living Will. Through it all, I continued to believe that my uncle was nearing heaven's gates and we were with him, loving him, comforting him, and fulfilling his wishes until he passed over to the "other" side.  Although terribly difficult, I know that it was an honor and privilege to be so close to heaven with him.  I miss him everyday, but I know that he is free.  Thanks for sharing, Mr. Berg, this good information to help others."

Buddy Bear  - Dublin, Ireland - (22 July 2013): "Stanton this is Heartbreaking for me to read, my mother has now stopped taking liquids and food, for the past few days they have inserted a tube in her stomach so she is getting fluids. I am HEART BROKEN."

Veronica Perrusio  - Morris Plains, New York - (22 July 2013): "Thank you for posting this Stanton, 3 years ago my dad was at home with Hospice. I was clueless as to what to do. He did improve and just turned 90. Although your story is sad, it brought me relief and gave me more of an understanding. Thanks again."

Ann Zdunczyk  - Winston-Salem, North Carolina - (22 July 2013): "Mother was a nurse in WWII and also for most of her life. She made a living will and made me the medical power of attorney. She was serious that she not have extraordinary measures made and not to be placed in a nursing home. Mother lived with me from 1989 until she passed 2011. Mother passed away here at home as she wished. I was her 24/7 caregiver and my sister would come when she could. She was here when Mother passed away. Only people like you guys understand what it takes to be a caregiver. I am so glad I found this site when I did, it let me know that I was not alone. Love you guys!!"

Heather Pearson  - Southampton, United Kingdom - (24 July 2013): "TOP STORY!  Extra - Extra -Friends' News ."

Erma Yates (Pastor) - Prior Lake, Minnesota - (23 July 2013): "This is the most significant page you have released thus far.....  Thank you. God is blessing..."

Jocelyn Delaney   - Raumati Beach, New Zealand - (24 July 2013): "Excellent article.  They are heart wrenching decisions.  I made the decision that that there would do no intervention to extend Paul's life, but it was very hard to stick to that decision when the time actually came.  The fact that I knew my children agreed with me helped immensely...The Home that Paul was in told me right from the start that once he could no longer swallow that he would not be tube fed.  We were lucky that it did not actually get to that.  He had been eating - with difficulty - up until 2 days before he died.   I think in the end he had just had enough."

Michelle Marrs Clark - Manchester, United Kingdom- (8 August 2015):"Thanks Stanton that was very informative , especially about the intubation which I knew a little about and was asked yesterday but wasn't sure of . I knew it could cause more pain and suffering but you explained it well . Its good to have all the facts when making these very important decisions."

Angela Brown - Burnley, Lancashire, United Kingdom - (17 May 2016):"And if you can say that Stanton (DNR) when I know how much you loved June just says it all...I agree with everything you say about the bed Stan. Mum needed a hospital bed and had one at home for eighteen months. When she went in a residential home, she wasn't allowed one."

Anne Gaskarth - London, United Kingdom - (17 May 2016): "Stan you should write a book. Seriously. Publish your thoughts- they bring us much comfort."

 

 ---

June's Passing

  June 1990

After battling Alzheimer's for almost 12 years, an exhausted June was finally called home by God on October 23rd, 2008. Her funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website under the "In Memoriam" label -or just Click on:

 

 "June K. (Rolstad) Berg - In Memoriam".