The Caregiver's Health, Stress and Mortality
- Published on Tuesday, 11 November 2008 20:18
- Written by Stanton O. Berg
"Caregiving is an inadequate term...it's really LOVE‐giving. You essentially need to be willing to give unconditional love to the person that's suffering from Alzheimer's." - Mark Shriver
The American Medical Association reports (19 February 2008) in a report on “Caregiver Health” that “Care giving can be stressful and may contribute to:
1. Serious illness and depression....about half of the caregivers who care for someone with Alzheimer’s disease develop psychological - distress.
2. Financial: In addition, care giving can result in new financial burdens with:40 percent of the caregivers incurring new financial expense for care related products, services and activities.
It is estimated that 26 percent of caregivers spend up to 10 percent of their monthly income on care giving activities.”
The Family Caregiver Alliance
The Family Caregiver Alliance of the National Center on Caregiving has issued a fact sheet on “Caregiver Health.” (2006) The following is noted in that report:
1. Higher levels of clinical depression are attributed to people caring for individuals with dementia. Studies show that 30-40% of dementia caregivers suffer from depression and emotional stress.
2. Depression and anxiety disorders found in caregivers persist and can even worsen after the placement of the patient in a nursing home. Many caregivers who institutionalize their relative report depressive symptoms and anxiety to be as high as it was when care was in the home.
3. Caregivers have an increased risk of heart disease. Caregiver’s exhibit exaggerated cardiovascular responses to stressful condition which put them at greater risk than non caregivers for the development of cardiovascular syndromes such as high blood pressure or heart disease.
4. Caregivers pay the ultimate price for providing care – increased mortality. Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non caregivers of the same age. In 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.
Stan’s Eleven (11) Year's Experience with wife June and Six (6) years with mother Ellen.
The estimates of financial expenses by the American Medical Association appear to be very conservative. My own experience indicates that my out of pocket medical expenses for June exceeded 20% of my gross income. This is in spite of the fact that I did all the right things financially to prepare for such a day. (We had 1. Medicare and supplementary 2. Blue Cross - Blue Shield insurance and 3. Medicare Drug coverage’s. We also had 4. John Hancock long term care insurance.)
My wife June passed away from the complications of Alzheimer’s disease on 23 October 2008 after surviving for almost 11 years. (I took care of my wife June at home for over 7 years. The last 3.5 years June was in a nursing facility. ) Almost exactly one year before on October 27th, 2007, my mother Ellen F. Silbaugh also passed away from complications of Alzheimer’s disease in a nursing home in Barron, a small town in Wisconsin. Probably because of her age, and inappropriate drugs, her struggle with the disease was only 6 years. I am an only child so I did not have the normal siblings with which to share her responsibility. My mother Ellen was in early-middle stages when she passed away. Mother's Alzheimer's was superimposed on June's later stages. It was a very difficult time.
(Photo below right is June in February 1998, one month after her diagnosis with Alzheimer's.)
I am an overly sentimental and an overly emotional person. Such a temperament is not well suited for being a good caregiver. As a result, stress and grief have been my intermittent daily companions over the years that I have cared for June. Every day would present periods in which my mind would be engulfed in sadness and grief. I have had occasional priods of displayed anger at what I considered incompetence of others in relation to June's care while in the assisted living facility. Thankfully, this did not happen often. I am also thankful that I have never progessed to a state of depression. Every day would also have lighter moments that would have had a stabilizing effect. There is no way of determining the actual affect this stress period of caregiving had on my current resulting state of health. (High Blood Pessure and Hypertension, two heart attacks and insertion of a Stent, total Right Hip Replacement, Kidney Cancer of left Kidney with cryosurgery, and Prostate Cancer that is in treatment at current time.)
Editorial Note: My doctor at the time, apparently noting my emotional and grief problems, tried to talk me into going on an anti-depressant. (Lexapro) I remember thinking..."Thats all I need now with all the drugs I am already on". I am very happy I did not take his advice. My subsequent research revealed that his would have been a huge mistake!
During the last 3.5 years that June was in a nursing home, I spent four days a week (32+ hours) with June. (Monday, Wednesday, Friday and Sunday) I would arrive at the nursing home (Benedictine) at around 8:45 AM in the morning and leave in the late afternoon around 4:45 PM. I would assist with her care including feeding her meals and snacks and do what I could for her comfort. Because she could not walk or talk and would sit mostly with eyes closed, I would most often simply sit by her side and hold her hand. I would talk to her occasionally, tell her how I loved her and would always care for her. I would sing June's favorite hymns to her as she was waking up from her afternoon nap period.
June was non responsive as is typical of Alzheimer's in late stages. Her life appeared to be without any real quality. I tried to simply provide a comfort zone around her. I would take her in her Geri chair to the small Chapel in the nursing home at noon on each of the four days that I was there. This would provide time for prayers and quiet times. I am sure that this time was helpful to both of us. The other three days were partially covered by my three children who lived in the local area. I had them on a schedule to provide the most complete coverage for June. I am fortunate in that my youngest daughter Julie has many years of experience working in a nursing home - over 30 years and in the last years of June's life she took a position in the activity department of June’s nursing home. Although her area of responsibility was in another area of the nursing home, it was comforting to know that she was on the premises five days a week.
(Photo Below Right is my Mother Ellen F. Silbaug)
My Mother Ellen at the same time was a resident in the Barron Nursing Home, a nursing facility 100 miles away in the small town of Barron where she had lived her entire life. Because my Mother Ellen was in early and later in middle stages while June was in late stages, and I had no siblings to assist with my mother, I had to decide where I was most needed. June seemed to need me more at that time. My mother's short term memory with confusion was first noted in 2001-2002. When my mother later died in October 2007, it appeared that she had traveled into the middle stages of this disease by the time of her death.
While June was still in the early stages, June would travel with me to visit my mother until such a time that June's condition required her further care in an Alzheimer's Assisted Living facility in March of 2005. At this point I started using Saturdays to visit my mother and would try to call her daily. I had taken over mother's checking account in the year 2002 during the period of my mother's initial confusion. I was doing all of her bill paying during her early stages as she was repeatedly overdrawing the account by paying out funds to anyone that asked for a charitable or political handout. One month she was overdrawn 17 times. I continued handling her checking account until her death. In early 2003, my mother's condition required she be in an assisted living facility for her future safety. During the preceding week of making arrangements for Mother's to move to Monroe Manor the Assisted living facility, June and I had to travel to Barron three times in the one week. My mother did not remember we had been there that week nor did she remember my daily phone calls. Later in the year while at the assisted living facility, Mother fell and fractured her hip. Following the hospitalization for the hip fracture, Mother was transferred to the hospital’s attached nursing home facility for the remainder of her life. Living 100 miles away was one of the reasons I was not on top of Mother's medications as I should have been! I unknowingly, permitted the nursing home to give her medications (antipsychotic) that in my later opinion, eventually caused her death. I had spent the day with her on a Saturday before she died and had no inclination that she was close to death. The nursing home staff also was not aware of her impending death. I had inquiries in to the doctor concerning the medication for the entire preceeding month before she died as I had noted a gross change in her condition. My mother appeared to be in a drugged stupor. I remember inquiring again on my last day’s visit and being told that the doctor had not yet called back on my medications inquiries! My later complaint to the State of Wisconsin resulted in an investigation and two citations were issued against the nursing home...but that did not bring my mother back!
At the Benedictine Health Care Center Nursing Home I had a standing set of written instructions with the duty nurse that I was to be called regardless of day or time of day, if any care problems with June should arise when I was not already at the nursing home. I lived a mile away and could be there in 4 minutes. There was a time that they called me in the evening (8 or 9 PM) after June had been given some liquid medication that resulted in some of the liquid medication inadvertently getting into her lungs. She was in much distress with coughing and discomfort. I spent the evening until 2 AM in the morning with her, trying assist the staff in relieving her coughing and otherwise make her more comfortable. During that time she was intermittently on oxygen and a non invasive type ventilator was used. I would pat her shoulders and hold her hand. It was after 2 AM that the coughing subsided and June was able to go to sleep. It was a terrible evening for both of us. The medication was immediately changed from a liquid form of medication to a non-liquid form of medication so as to avoid such future problems.
(Photo below right is Stan pushing June in her Geri Chair - 2007 - Photo Jim Gehrz)
My other three days were used to do the necessary things about the house, laundry, shopping; errands and other chores. Such time was also used to work on my many projects involving Alzheimer’s awareness and funding advocacy and Alzheimer’s care practice advocacy. I also had and have many projects to honor June and to preserve her memory including the maintenance of her web site.(www.junebergalzheimers.com) I feel my varied activities have had a considerable balancing effect on my daily periods of sadness and grief. Now that June has passed away, I have entered a new era of stress and grief management.
I have had two heart attacks in the past years during the late stages of June's Alzheimer's. Again I do not know what effect June’s sickness has been - either in the cause or aggravation of this heart condition. I always felt that with my very low overall cholesterol, that I was not a candidate for a heart attack. My cholesterol was overall very low for years. A reading of 100 was recorded just shortly before my most recent heart attack on October 16th, 2008. My previous heart attack was approximately one year earlier in 2007. My first heart attack was a little before my mother passed away from Alzheimer's in the Barron, WI nursing home.
I do know that a caregiver will unconsciously color or modify their judgment in favor of the loved one that they are caring for. I see this dramatically demonstrated in my own heart attacks. I suffered a heart attack on 16 October 2008. During the treatment of that heart attack, evidence was found of the old previous heart attack in 2007.
(Photo below right is Stan with June outside Holy Spirit Chapel - 2007 - Photo Jim Gehrz)
I remembered clearly the events of the old attack (a year previous) but did not realize I had suffered a heart attack. On the day in question I was preparing to leave for the nursing home to care for June at around 8:30 AM. I recalled not feeling well, having some strange vision problems and having a pulse rate double my normal rate. I had my own blood pressure monitor at the house. My blood pressure was fine but my pulse rate was elevated. I was more concerned about a stroke because I recalled the warnings about excruciating chest pain and a feeling like an elephant was sitting on one’s chest as an indication of a heart attack. Also symptoms were said to be pain down the back of the arms and on the jaw lines. I had none of these symptoms. I looked up stroke symptoms and my symptoms did not match those either. While I thought of going to the local hospital emergency room, I decided against it as I knew there were no competent people on duty that day at the nursing home that I felt would be able to properly feed June (She was very difficult to feed.). When I reached the nursing home I asked the duty Nurse Kim to check my blood pressure and pulse rate thinking that maybe my monitor was inaccurate. She verified that my pulse rate was highly elevated. She urged me to go to the nearest emergency room. Since I was not in any real pain, I decided to postpone judgment on that option in favor or staying with June and feeding her. I did call my regular doctor and left a message for him. I was half way through the feeding process with June when he called me back. He also urged me to go to the emergency room. I again decided against it until after I had completed caring for June. When this was accomplished by noon time, I felt much better and did not want to risk being held overnight for observation. I made an appointment to see the doctor at a better time for June in about two days. By the time I got in to see the doctor, I was feeling fine and my pulse rate was normal so the incident was filed under “interesting but puzzling” circumstances.
During the next several months I did note small discomforts when doing strenuous activities. (Slight discomfort on the inside of my right elbow and on my jaw lines.) It was only when I had a repeat of the first troubling symptoms a year later (Not feeling well, vision differences, elevated pulse rate) that I sought out medical aid on the same day. This time it was during one of the days I was running errands at the house and on a day that June was being well taken care of by competent staff. I felt comfortable in spending the time to have the symptoms checked out. The net result was that an EKG and blood tests verified I was having a heart attack.
I was quickly settled into the Cardiac wing of the hospital (Unity) for the night. The next day an angiogram revealed a 90 percent blockage of an artery. This was repaired with a stent and I returned to my house on the third day. The same angiogram revealed an old previous blockage (100 percent) that was already starting to by pass itself. This was evidence that the previous set of similar symptoms was in fact an earlier heart attack. I was very fortunate in that my error in judgment did not result in my leaving June permanently. There was never any attempt or intention to be a big hero by staying by June’s side during the time I was having my first heart attack. (Just days before my mother died in 2007.) I simply did not understand how serious it was. My unwise decision was colored and swayed by my concern for June and I made a wrong call. My second heart attack was only a matter of days (16 October 2008) before June passed away 23 October of 2008. My subconcious mind seemed to be more alert then my conscious mind!
(Photo below right is Stan with June in the Holy Spirit Chapel - 2007 - Photo- Jim Gehrz)
There is the rather amusing saying that “God takes care of drunks and old fools.” Apparently he took care of an old fool at that time.
I am sure that there are many other care givers that also make judgment calls that are not in their best interest but are the result of love for the person being cared for.
I feel fortunate that I have never experienced the psychological handicap often attributed to caregivers. Caregivers sometimes report having periods of anger and resentment against their loved one for putting them through periods of much stress. I have never had such feeling in regard to June. Perhaps it is because June and I have had a most extraordinary relationship. She had given me fifty great years of marriage filled with unconditional love before Alzheimer’s finally took control of our lives. While I have given her reasons to forgive me, she had no faults and has never given me any reasons to forgive her. She is truly a remarkable lady. I have only feelings of gratitude and love.
Everyone admonishes the care givers to “take care of yourself.” I would offer the same advice but I know that such trite statements are really not helpful. When one looks at my track record, I am hardly the person to be giving advice on caregiver’s health.
There is however a lesson in all of this:
"When your body tries to tell you something is wrong - It is time to listen!"
Each individual is different and no simple practical advice is universally applicable. How does one take care of oneself under such emotional conditions? There really are no easy answers. I have found help through my friend Don who was faced with similar problems. Don also had a wife Gloria of the same age as June, who is also in a nursing home with Alzheimer’s. Don and I would meet for coffee and conversation at regular times to share similar problems. As a result we became good friends. Such friendly interactions tend to ease the burdens of caregiving
Don gave me a little booklet as a gift. The title is: “Reflections for Caregivers – Comfort and be Comforted” .by Pat Samples.
The book focuses on Caregiving as God’s Holy work. One page in particular in this little booklet has inspired me more than anything I have ever read. The title on that page is “Holy Watchers.” It is the best explanation I have ever seen of what caregiving is really all about. It summed up perfectly my relationship with June in her end times. I have difficulty reading the page without emotions, tears and sad reflections on June.
“Much of our loved one’s suffering is invisible, at least to the outside world.
Sometimes we’re the only one who knows the pain is there,
where it comes from and how severe it is. We try to explain it to others,
but they aren’t around to witness it, day in and day out, the way we are.
We stand alone along side our loved ones as the vessel holding in all the fear and sorrow
and hurt. We are the “holy watchers,” the keeper of the flame of love.
Some day, just being there as caring witnesses is the most important gift we give.
Be with me dear God, as I say to my dear one, "Here I am."
Update - 18 September 2012: At last Sunday’s church service our pastor David Glesne continued a series of lectures on Love and the Bible commandments relating to love. As a part of that sermon he discussed the four Greek words that define various kinds of love…we have one word in English but the Greeks have four words and each has a different kind of love in mind…what was the point of the Greek lesson?…much of the original old Bible came to us in the Greek language and it in turn was then translated and interpreted…yes, it is taking me a while to get to the point!
The four Greek words and their meanings are”
Eros – meaning sexual or romantic love.
Storge – meaning parent and child love.
Phileo – meaning brotherly love.
Agape – meaning sacrificial love.
I could not help but think of how “Agape” describes the love of many of our Alzheimer’s caregivers on a daily basis…so to all of you caregivers, take a bow, you are what defines the zone of love and comfort around the Alzheimer’s and other dementia victims that helps to ease their late stage tremendous burdens of daily fear!...and yes it is truly sacrificial love…all the studies show that the Alzheimer’s caregivers suffer a hit to their health because of the length of the time journeying through this always terminal disease…it is not unusual for this drain on their health to bring their own life to an end before the primary victim’s final bell tolls…
Note: June's funeral notice as printed in the Minneapolis Star Tribune following her death in October 2008 can be found on the top blue navigation strip under the label "In Memoriam" and on the drop down menu as item: