dementia

Sex in long-term care dementia units

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Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike.  The attached article is well-worth the read, and I have a few comments of my own to add.

English:
(Photo credit: Wikipedia)

I acknowledge that sexual activities most likely occur in every long-term setting out there.  Consenting adults – even those with varying degrees of dementia – need touch and physical connection.  I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection.  In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip.  Or perhaps a hug and a kiss are involved.  All of these actions are perfectly innocent without harm as long as all touching is consensual.

Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.

What about those patients who are already married to someone else?

English: Gender symbols for homosexuality (les...
(Photo credit: Wikipedia)

It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one.  The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment.  (I think it’s important to not assume that adulterous motivations are in play here.)  Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.

I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet.  And you don’t have to agree with what I’ve stated above.  The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.

One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.”  The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs.  There are no completely right or completely wrong answers.  I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject.  I take comfort in that fact.

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Putting a face on Alzheimer’s

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One Son, Many Voices – An Elegant Video About Alzheimer’s & Dementia.

The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved.  The toll on the patient – measurable, as you will see in this Shapiro family video.

The toll on the family – especially those caring for a member with the disease – beyond measure.  Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self.  Can you imagine it?

Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.

If you can help monetarily, please do so: www.alz.org.

If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.

Whatever you do, please do something to make a difference.

Alzheimer’s disease is expensive

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My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.
My father and my sister-in-law, both of whom have died from Alzheimer’s disease in the past five years.

According to the World Alzheimer’s report:

If dementia were a country, it would be the world’s 21st largest economy, ranking between Poland and Saudi Arabia.  In the year 2010, the total world cost for caring for the dementia population was $604,000,000,000 (billion).

By 2050, in the United States alone, the costs for caring for the dementia population will be: $1,200,000,000,000 (trillion).  That’s more than 1,000 x $1 billion.

Are you thinking of making any charitable contributions to a worthwhile organization before the end of the year?

Consider: www.alz.org or www.alz.co.uk

Alzheimer’s disease is a murderer

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and I’m as mad as hell about the millions of crimes that it has gotten away with.

Alzheimer’s and other dementias are unfair to the one diagnosed and to all those involved in that person’s life.  The unfairness unfolds with the worst day of that person’s life – diagnosis of a disease for which there is no cure – therefore it is always fatal – and it is a disease where little progress has been made in treatment options.

Let me introduce you to two fabulous people who are no longer with us because this disease killed them.  Yes, Alzheimer’s murdered them.

My hero - my father: 1918 - 2007
My hero – my father: 1918 – 2007

My father, Don, was born in 1918 in Toronto, Canada.  He married my mother, Patricia, and they had three children.  They became U.S. citizens in the late 1940’s/early 1950’s.  My father was an extremely distinguished, courteous, humorous, and dedicated family man.  He received his Alzheimer’s diagnosis on June 3rd, 2005 and I was there by telephone conference, having attended his initial neurological evaluation a couple weeks earlier.  He died at approximately 12:10 a.m. on October 13th, 2007.

Nancy, an adoring daughter-in-law to my father, seated in front of her.
Nancy, an adoring daughter-in-law to my father, seated in front of her.

My sister-in-law, Nancy, was diagnosed with mixed dementia just a few months after my father died.  Nancy was born in 1942 in Quincy, Massachusetts.  She graduated from UCLA with a degree in flute performance and used those skills in many venues throughout her life.  Nancy had three children from her first marriage – children of which she was very proud.  Nancy was an extremely talented interior designer, opening her own design business in 1987 – the same year that she married my brother, Don.  Nancy died from mixed dementia, that also included Alzheimer’s, at approximately 11:05 a.m. on July 4th, 2012.  Just two and a half months later, my brother and sister-in-law would have celebrated their 25th wedding anniversary.

Saturday, September 21st, 2013 is World Alzheimer’s Day.  One in every three seniors dies with Alzheimer’s or other dementia.  If you do not die from Alzheimer’s, you die with it.   From Alzheimer’s Association 2013 Facts and Figures.

Won’t you consider making a monetary donation in the hopes of capturing this murderer?

U.S. website for the Alzheimer’s Association: www.alz.org

International website: www.alz.co.uk

Other countries have their own dedicated websites as well.  Please find those sites through any search engine you would normally use, and let’s slap the cuffs on this criminal disease.

Coffee is not hydration

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Dehydration and Dementia.  The attached article is a very thorough look at the importance of hydration in the elderly, and how to assure that a person with dementia – who may no longer feel the thirst response and/or does not know how to express his or her thirst – is properly taken care of.

in a hike
(Photo credit: Wikipedia)

My husband and I went for a hike last summer during which we encountered a gentleman who I would guess was in his early 80’s.  It was a warm, muggy day and my husband and I each had a 20 oz. bottle of water for our 3-mile hike.  The gentleman was reviewing his hiking map and we stopped to chat with him about the fork in the road and which path lead where.  “Sir, do you have a bottle of water that you can drink while on your hike today?”  “No – not needed; I have a thermos of coffee waiting for me back at my car.”  “I wonder, sir, with it being so hot and humid, if you might benefit from taking one of our bottles of water.  I would be happy to give you one we’ve not used yet so you’ll be comfortable.”  “That’s very kind of you, but I’ll be fine.”

So he went on his way but I told my husband I wasn’t comfortable with this fellow being on his own and could we please follow him at a distance to make sure he gets back to his vehicle.  And so we did – and he returned to his vehicle, and no doubt partook of his thermos of hot coffee.  Not very refreshing.

Coffee cup icon
(Photo credit: Wikipedia)

Although hot coffee and tea certainly contain water as part of their preparation, straight water – or even fruit juice – are a better option because of their lack of caffeine.  Years ago, when I would visit one of my aging family members, you could always count on him holding that quintessential cup of coffee in his hand throughout the day.  Regardless of the weather – no glass of water reached his lips – except perhaps when he took his daily vitamins or medications.  This message is directed to those who provide care for the elderly, those who have older family members, and perhaps this message is also directed towards you.  Drink good ol’ H2O.  It doesn’t have to be packaged in a fancy bottle, you don’t have to purchase it, it’s always available at the touch of the nearest faucet, and you can access 100% water faster than making a pot of coffee.

What are you waiting for?  Go get a glass of refreshing water!

Dementia: a shortened good-bye

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Dementia and Suicide.

The attached article, written by a blogger in the UK, is straight-forward and thought provoking – it should be.

I live in Washington state, and I am glad that Death with Dignity is a legal option assuming all the legal requirements are met.  This is a very personal subject matter, as is the choice that individuals will make to seize the opportunity, or to reject the opportunity.  There is definitely a separate element of this option when the law is utilized for those with dementia. When is someone still capable of making the decision?

A non-profit in my state, Compassion & Choices of Washington, is an excellent resource for materials and information. They have even developed an Alzheimer’s Disease and Dementia Mental Health Directive – a first-of-its-kind directive that allows people – while still competent – to document their wishes related to who will provide their care, where care will be provided, how it will be financed, how to deal with difficult behaviors that may arise, and many other matters that both caregiver and patient face.  Bless all of you who face this horrific disease that has no effective treatment, and certainly no cure.

Evil undercover: Alzheimer’s, Abuse, and the Elderly

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Alzheimer’s and the Elderly.

I’m attaching the above article from a fellow blogger.  He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being.  The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.

Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens.  Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities.  Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.

Worse?  Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse.  I know that you and I are quick to say, “Fantastic!  What a great relief that would be if the person no longer lived with his or her abusers!”  We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings.  These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.

These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me.  Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.

That makes me mad.