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Sex, Intimacy and Alzheimer’s

Love in a wheel chair

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A short time ago while reviewing comments on one of the many Internet Alzheimer’s web sites, I noted a comment that suggested a need for a special written policy on sex. It was suggested that such a policy was needed relating to sex among Alzheimer’s and dementia patients in a nursing home environment. The opening page of the comments also used an illustration that pictured two residents in side by side wheel chairs holding hands. The illustration did not suggest sex to me but simply a caring form of intimacy. The suggested need for such a policy stunned me.

Most Alzheimer’s and other dementia residents are in the middle to late stages of this disease and sex is the last thing on their already damaged minds. Most live in daily fear. By late stages, most are in wheel chairs. The remainder are almost all with canes or walkers. Most are very elderly. Not a very sexually threatening group…While there are exceptions to everything, such exceptions would represent a very, very small minority. I would guess that most sexually suggested behavior is mostly a situation of misunderstanding by onlookers, family or others…

The only clearly sexual incident I recall in all my years of association with residents, family and staff of Alzheimer's facilities, was an incident related by a family member at one of the monthly family support meetings. A daughter of an Alzheimer's father, who appeared to be in early middle stages,  told of an incident involving her father. The father had asked his daughter for sex...The daughter was devastated by the request and asked if any other family members had ever had similar experiences...none had.

By the time the victim of Alzheimer's reaches the late stages of the disease, they lose control of their arms and legs and require total care for their survival...in the very late stages they become almost non-responsive...June hardly opened her eyes in the last year of her life.

I have spent many years in and around Alzheimer’s and other dementia residents in a number of nursing homes. My mother Ellen spent her final years in a nursing home before passing away from Alzheimer’s complications. My wife June spent her last years in a nursing home before she also passed away from the complications of Alzheimer’s...In addition I was also a frequent visitor to the nursing home of two friends who died, one from complications of Alzheimer’s and the other from Lewy Body disease. Since their passing I have visited my wife’s old Alzheimer’s nursing home facility every week now for five years. My daughter Julie has been a part of the nursing home scene for the last 36 years. Julie has served both as a nursing assistant and currently as an activities director…I can recall no situations that I thought created a need for a special Policy for staff members of such facilities that outlined procedures for problems of sex among the Alzheimer’s and other dementia residents.

There is a strong need for a warm and a caring intimacy among such residents…Intimacy is not sex, it is simply a caring loving closeness and a loving environment. Hand holding and other non sexual touching is vitally needed as well as loving assurances and reassurances...

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  June and Stan May 2002

June and Stan - Intimacy in Early mid stages of Alzheimer's - early year 6 

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I recently read an article entitled: “Marriage and Intimacy”. This article appeared in the October 10th 2013 issue of “The Catholic Spirit”. The author Mathew Kelly pointed out that all successful long term marriages contained “Intimacy”. He was careful to point out that while sex may contain intimacy, sex is not a part of his definition of what he called the kind of intimacy necessary for successful marriage and needed for happiness. This is the same kind of intimacy needed by all the victims of Alzheimer’s and other dementia diseases in order to grant them some small  measure of quality of life…all too soon, their lives will have no quality…but let me quote portions of Kelly’s very fine discussion of ‘Intimacy”.

“We cannot have a dynamic faith without intimacy with God; and we cannot have a dynamic marriage without intimacy with each other. But intimacy is one of the most misunderstood realities in modern times and, as a result disturbingly absent.

Sex is not intimacy. It can be a part of intimacy, no question. But sex doesn’t equal intimacy. It doesn’t come with a guarantee of intimacy. Sex isn’t absolutely necessary for intimacy. And, yet almost every reference to intimacy in modern poplar culture is a reference to sex.  If we are ever to truly experience intimacy, we must first move beyond the pubescent notion that sex and intimacy are synonymous.

Intimacy is the one thing that a person cannot live happily without. Think about it. Why are the happiest people you know, the people who are truly thriving? Do they just have sex, or do they have intimacy? They have intimacy, don’t they? They might have sex, too, but the foundation of their lives is an authentic experience of intimacy. They have people they can share their lives with…Human beings yearn above all else for intimacy. …without intimacy, all the riches of the world cannot satisfy our hungry hearts…Intimacy requires that we allow another person into our heart, mind, body and soul. It is a complete and unrestrained sharing of self.  Not all relationships are worthy of such complete intimacy, but our marriage is…

I would add …also worthy are the loved ones we care for that are struggling with the shadows and darkness and fears of “Alzheimer’s or other dementia diseases.

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June and Stan Christmas 2003

June and Stan - Intimacy late middle stages Alzheimer's - end of year 7

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Mayo Clinic’s new encyclopedic volume on Alzheimer’s “Mayo Clinic on Alzheimer’s Disease”, 383 pages, 2013, Medical Editor, Dr. Ronald C. Petersen (35 contributing editors) -  has only a very brief discussion on the subject of sexual activity by Alzheimer’s victims or patients suggesting that this is not a significant problem area.

Only two small paragraphs of discussion are devoted to this topic under a heading of “Inappropriate Sexual Activity”…Their very brief references to this subject are:

Mayo Clinic new book on Alzheimer's"Sexual needs and feelings are a natural part of adult life. Although the sexual needs of someone with dementia may change, a need for human contact and touch will likely stay consistent.  Some behavior exhibited by your loved one may be sexual in nature, but often the cause is misinterpreted.”

In the second paragraph, Mayo briefly discusses areas of possible misinterpretation…

“Problem behavior can include accusation of infidelity, sexual advances, …vulgar or obscene language. Lack of inhibition may cause your loved one to touch his or her genitals or undress in public – perhaps because he or she feels uncomfortable or needs to use the bathroom. Although these actions may not be sexual in nature, they can be considered as such by onlookers.”

It is clear to me that Mayo does not consider sexual activity to be a problem area among the Alzheimer’s or dementia victims and family any more than I do!

Symbolically the front cover of Mayo's new Alzheimer's book shows a caregiver holding the hands of an Alzheimer's victim and extending the comfort of touching and  holding hands...as I did so often on a daily basis with June! Below is photo of June and I in late 2007, just a year before she passed on from complications of the disease. June was almost non responsive and hardly opened her eyes.

Mayo has some interesting and compassionate comments on the "Final Stages of the Disease". 

"You may wonder if your loved one is aware of what is going on around him or her in this last stage of the illness. Although the body and mind are in the process of shutting down, your loved one still may be aware of your care and affection. Hold hands. Stroke  his or her forehead. Say what you need to say to bring closure to your relationship."  

* Emphasis added.

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Federal Laws and Regulations

Federal regulations provide that married couples in nursing facilities may share a room when both spouses consent to the arrangement. (42 C.F.R.: 483.12 (m),

Centers for Medicare and Medicaid Services (CMS) issued a directive stating that residents have a right to visitors on a 24 hour basis, including same sex spouses and domestic partners….28 June 2013.

These regulations  require facilities to accommodate residents “individual needs and preferences” so long a other residents are not endangered. (42 C.F.R.: 483.15 (e)

If two residents, legally married or not, want to be together, they have that right. Whatever those residents choose to do, as long as both have capacity to consent and there is no risk of harm to either resident or a violation of a regulations, it is their right to be together and to have privacy.

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Minnesota State Laws

Minnesota State Statutes (2013) in regard to nursing homes read:

"Subd. 28.Married residents.

"Residents, if married, shall be assured privacy for visits by their spouses and, if both spouses are residents of the facility, they shall be permitted to share a room, unless medically contraindicated and documented by their physicians in the medical records."

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 A case in Point and a case of “Over Reaction”.

Problems may occur when residents having diminished decision making capacity (DMC) or cognitive impairment are sexually active…the May 2014 issue of “Long Term Living” reported such a case that resulted in an over reaction by the facility administration…2 residents with a form of cognitive impairment were observed having sexual intercourse…the administrator was charged with professional incompetence, negligence and violating a regulation or law regarding the practice of nursing home administrators...the director of nursing and the administrator were terminated…the facility was cited by surveyors with “immediate jeopardy” and fined...the family of one of the residents sued the nursing facility. ..At a hearing involving the former administrator, an experienced geriatrician testified that both residents were capable of consenting to sexual activities. The State’s Board of Nursing Home Administrators concluded that the sexual exchanges were consensual.

Comments: This case would represent the very unusual...A recent survey in the New England Journal of Medicine found that the elderly were sexually active...Ages 65-74: 53 percent, Ages 75-85: 26 percent...there is no suggestion that this survey included any elderly person suffering from Alzheimer's or one of the dementia diseases...over 95% of all Alzheimer's strikes at the advanced ages beyond age 65...the nursing home residents would normally be in the middle late to late stages of the diseases and not likely subjects for sexual intercourse...this is the point in the disease where most cannot walk and are losing control of their body as the diseases closes in on them...while they crave intimate and loving contact this would not be of a sexual nature. 

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June in 2007

 June and Stan' hands - Intimacy in Late stages of Alzheimer's - year 11

 

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As an item of possible interest, I am posting a comment I made two years ago concerning a husbands love and the putting aside of sex and the thoughts of sex when engaged in caregiving for a terminally ill wife deep in the shadows of Alzheimer's...it was my response to the local WCCO TV News discussion of sex frequency...

"On a lighter note… it was just a few days ago (10 November 2011) that WCCO-TV News aired one of their “good questions” feature series on how many times/frequently did normal couples have sexual relations…I rather facetiously but honestly made the following comment on the facebook page of Amelia Santaniello the WCCO-TV Anchor lady involved in the question.

“I was amused by last night's "good question" on frequency of sex in the marriage relationship...for me it has been so long I hardly remember what the term means...for June and me, sex ended very early in her 12 year journey into the shadows of Alzheimer's...that did not affect our marriage relationship...in fact the deeper she traveled into the darkness of Alzheimer's the more intense my love for her became and the more I wanted to care for and protect her...now that she has been in Heaven for over 3 years (October 23rd, 2008) …I still consider her my wife...while death can change our relationship, it has not severed it...she will always be my little lamb...”

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See the related page on this website - about a another Husbands' Love for His Alzheimer's Wife:

 

"Alzheimer's and A Husbands's Love for His Wife"

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Reader's Comments

Amy Stiel Almas  - Waterford, Michigan - (19 November 2013): "We all need human touch. Beautiful essay, Stan!"

Marsha McKneely Ault - Nacogdoches, Texas - (19 November 2013): "Beautifully written Stanton ... Human touch is needed by all God's children. Forever love. . ."

Mary Hammarlund Lundeen  - Coon Rapids, Minnesota - (19 November 2013): "A policy was probably wanted not for the resident, but for the residents spouse who would like some intimacy time with their spouse. The retirement home where I work had to deal with that. Not sure how they handled it."  (Editorial comment: The concern and the discussion referenced above, clearly related only to sex among and between the residents...as a husband caregiver for a number of years and with many other such husbands, the idea of having sex with one's terminally ill wife would have been insulting to most.)

Jennifer Dabney  - Pomona, California - (19 November 2013):"What is the brown wooden item in June's hand next to you hand in the article you shared tonight? Was that something that helped her hand to not close up or did it bring her comfort? Thank you." (Editorial Note: This was a handmade Walnut wooden cross to both prevent hand clenching and to provide comfort to June a lady of strong Christian faith.)

Bridie Breen  - Manchester, United Kingdom - (20 November 2013): "Stan, your essay is one that enriches our human story. Intimacy of human touch is so basic and essential to wellbeing. Wonderful how your care and protection walked hand in hand with June to lighten her darkest days. Thank you for sharing."

Connie Lowers O'Brien  - Birchwood, Tennessee - (23 June 2014): "This is a very good article."

Caroline J. Benham  - Wellingborough, Northampshire, United Kingdom - (25 June 2014): "Stanton, thank you for writing again about this. I believe the main problem in the care home situation is that so much of the dementia care training dished out is irrelevant to the people they are caring for. The training packages cover the subject as if dementia were a disease and that people with this 'disease' suddenly have a loss of emotional sense. This leads to people losing their identity or 'personhood' through the way they are treated. The Carers respond to / treat them as if they are a piece of machinery gone wrong I.e. If x happens you press this button, if y happens move the flex a bit, if z happens put it in the cupboard and I deal fix it when I get back.When issues relating to intimacy or sex arise it is often the families that react against it and blame the staff who 'panic' and then try all of the above.The real problem is changing the attitudes of the general public so that the Carers have to be better trained in order to know more than the families.Thankfully that is beginning to happen now, all we need next is the money to be available to pay those who have the skills to train the staff."

 

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June's Passing

June 1994

After an almost 12 year journey into the shadows of Alzheimer's, early one morning in late October 2008, an exhausted June felt God's gentle touch on her shoulder and heard the words: "Come Home June!" As June lay like a wounded soldier on a battlefield, it was God's Angels that ushered June into a Heavenly Kingdom and into Jesus presence to the sound of a chorus of Angels...and June's new home, a "Mansion on the Hilltop", where there is no pain, nor illness nor tears...June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website in the drop down menu under the "In Memoriam" label - just Click on:

 

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