Visiting the Friend or Loved One with Late Stage Alzheimer's
- Published on Thursday, 12 June 2008 14:53
- Written by Stanton O. Berg
Over 50% of the residents of nursing homes have no visitors. The remaining years for many residents are spent in lonliness and isolation. (U.S. Govt. nursing home survey.)
Many find it difficult to visit friends or relatives that have late stage Alzheimer’s. They feel unable to cope with the communication barrier that exists in the late and final stages of this terrible disease. They feel uncomfortable and inadequate. We need to find ways to communicate outside the traditional manner. We must look at communication in a very broad sense.
I would like to paint a picture of what life is like for a late and final stage Alzheimer’s victim. To do this I am borrowing a detailed paragraph from a tribute that I published to my wife June for her last birthday in November 2007.*
* Note: June passed away from the complications of Alzheimer's on 23 October 2008. The last spark in the light of my life went out!
"June today is your birthday. Your ten year battle with Alzheimer’s has left you lying wounded, vanquished and exhausted. Like a snuffed out candle, only the slightest spark remains of what was once a warm, bright, vibrant and glowing lady. Your mind only in the “now”, wanders through unfamiliar surroundings. Some people look friendly, some look familiar, and some do not. Some surroundings are void or dark. Some areas are so sad that you cry. All are confusing. The simple act of coughing or sneezing frightens you. You sit with your eyes closed drawing a curtain on a world that is always bewildering and sometimes fearsome. Well meaning friends and relatives try to jog a no longer existing memory with references that are also long gone. When you awaken from a sleep or simply open your eyes it is into another strange and different world. There is an occasional flicker of familiarity but that is quickly lost. Your injured mind has abandoned you to a mental feeling of isolation and solitude. Your signature smile that would always light up your face is forever gone with only an occasional trace. The sound of your voice has been stilled. Even the touch of your hand cupped over mine is just a memory. You cannot walk, eat or bath without help. There are occasional uncontrolled tremors. Your life has been reduced to little more then a mere existence. While you are like a stranger who no longer knows me, you remain and always will be, the love and light of my life."
This is a disease in which the brain (neurons) is slowly dying and as it does so it begins to shut down various body functions. Doctors theorize that as the brain loses communication with the facial muscles that create smiles, the person can no longer smile. For June her signature was her smile. She had a smile that would light up her entire face. It seemed to be ever present. Now she no longer smiles. Perhaps at times inwardly she is smiling but it is no longer reflected in her face. One of the greatest barriers to communication is the loss of the power of speech. This loss is always prevalent in the late stages. It is this loss of a simple means of friendly communication that make visitations with the Alzheimer’s victim so difficult, heart breaking and frustrating.
Harley, one of our Pastors at the Redeemer Lutheran Church feels that we can still communicate by “Spirit to Spirit” No one who has ever traveled into the shadows of Alzheimer’s has ever returned. We will never really know what is happening in the mind and spirit of the late stage Alzheimer’s victim. For a view into the Alzheimer's victim's relationnship with God, Please click on this link:
The goal in visiting the friend and relative with late stage Alzheimer’s is therefore a rather simple one. One needs to create a relaxed and friendly atmosphere so that the Alzheimer’s person feels comfortable and has no feelings of stress, apprehension or concern. One needs to provide a friendly non-threatening and comfortable presence. Our demeanor will have much to do with creating such a comfortable feeling for our friend, relative or loved one.
Some do’s and or don’ts would be:
1. Do have a smiling countenance and speak with a friendly and quiet tone of voice.
2. If you are comfortable with touching - Do hold or take the person’s hand or arm.
3. Don’t ask the person “Do you remember..... They will not remember. They have lost their
“Short Term Memory“ in the early stages. They have lost their “Long Term Memory”
in the middle stages.” This approach will only cause confusion and stress.
4. Do tell stories of your memories of past enjoyable mutual times and events without any
suggestions or requirements that they remember such times and events.
5. Do read short and easily understood literary selections. (Humorous, light hearted or
b. “Reader’s Digest.”
e. Bible selections from the Book of Psalms or the friend, relative or loved one’s
favorite Bible passages.
f. Readings from the friend or loved ones favorite author.
6. Do play soft soothing music. (Classical music, music of the forties and fifties and Gospel
7. Do not play loud raucous music.
8. Do not speak in a loud tone of voice. If more than one visitor, do not resort to loud
9. Do not talk among yourselves where more than one visitor is involved.
Talking among yourselves will leave the loved one feeling left out, ignored and alone.
Do not talk around the loved one but rather talk with them and if you feel comfortable doing so, hold their hand while talking...this will give them the sense of being included.
I can recall clearly and very painfully during June’s middle stages when the children were all together for Christmas and were busy talking among themselves. Because of the handicapping effects of Alzheimer’s, June would be unable to take part in their conversations. She could not talk about World or local events. She would feel ignored or left out. She would look at me in dismay and would then get up and leave the room.
The visitor should not assume that the friend, relative or loved one is asleep simply because their eyes are closed. They may simply be drawing a curtain on a world that they do not know or understand and is common in late stages.
(Photo below right - June and Stan - candid photo taken by Jim Gehrz at the Benedictine on October 2007.)
There may be some very special times during a visit that one can serve as a source of comfort and reassurance. June would become afraid when she had to cough. She no longer understood this common reflex action of the lungs when irritated. She frequently made crying sounds preceding a cough. At those times, I could (as others could also) serve to comfort and reassure her. I usually took her hand in mine and toldl her that “It’s okay” and that “everything would be all right.”
Simply sitting with the friend or loved one and holding their hand or their arm may be all that is necessary or appropriate under the existing circumstances. Many hours of my time with June were spent simply sitting with her and holding her hand with occasional short quiet assurances of my love for her.
Do not expect a response from your friend, relative or loved one. Do not feel hurt of offended. They no longer possess the ability to respond in a normal manner by voice or touch or expression. This is all a part of the makeup of this terrible disease. I am sure however that within their hearts they are happy that you came and made their day a little brighter. You will not receive and do not expect affirmation in the normal manner. I am sure that the Holy Spirit within you is nodding in approval and somewhere an angel is smiling.
My caregiver friend Don gave me a little booklet as a gift. The title is "Reflections for Caregivers" - Comfort and be Comforted" by Pat Samples. (2001) ACTA Publications.
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 reflections on June.This little book high lights the importance of just being there.
“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.”
* Used with permission of ACTA Publications – www.actapublications.com
"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
A recent study by the University of Iowa highlights the importance of frequent visits by friends and family of Alzheimer's residents. It reinforces the importance of attending to the emotional needs of people with Alzheimer's.
A news release of 15 April 2010 reads: "Memory Loss Patients Reap Emotional Benefits of Visits by Loved Ones Even Though They Will Forget." Here is clear evidence showing that the reasons for treating Alzheimer's patients with respect and dignity go beyond simple human morals.
The University of Iowa study offers some good news for caregivers and loved ones of individuals with Alzheimer's disease. "Patients might forget a joke or a meaningful conversation - but even so, the warm feelings associated with the experience can stick around and boost their mood"..."A simple visit or phone call from family members might have a lingering positive influence on patients happiness even though the patient may quickly forget the visit or phone call...On the other hand, routine neglect from staff at nursing homes may leave the patient feeling sad, frustrated and lonely even though the patient can't remember why."
The study is published in the Proceedings of the National Academy of Sciences. Justin Feinstein, the lead study author conducted the study with UI neuroscience faculty members Daniel Tranel, PhD., UI professor of neurology and psychology and Melissa Duff, Ph D., UI assistant professor of communication sciences and disorders.
Editorial Notes: Loud noises, loud voices, loud music or loud laughter is considered negative noise stimulation and may cause agitation in the Alzheimer’s victim. See the essay (click on link):
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:
Article Updated/revised: 18 June 2012.