Ok Here goes
intimacy what does it mean to you?
is this a subject that you all ignore?or sidestep.
Is there not a need for it!!!!!
One of the problems I have found with the diagnosis of Vas Dem,is that the idea of being intiment is considered wired /perverted?
Does the desire for sex have to stop with the diagnosis.
I'll stop here but much more to ask.

Dear Sven,

Being intimate shouldn't been shunned by people with AD/Related dementias. Sometimes, people do loose sexual desires with certain illnesses. I'm not sure if this is one of them.

Perhaps you should discuss these feelings with your wife and doctor??? Or do you see a therapist?

Sven, great question, brave of you to ask. In my case, I have an overall neurological disorder that's further developed than my probable Alzheimer's. To give you an idea of what my disorder does, I've almost stopped sweating, my digestion is problematic, heart beat out of whack, blood pressure wacky, lots of pain and numbness, even my breathing has slowed down, and lots more. To dot that i, everything about my nervous system is below normal. No physical intimacy, and my personality changes get in the way of any other kind of closeness.

Dementia doesn't always come with a pervasive neurological disorder, I don't know how I ended up in line twice.

The idea of being intimate is not necessarily perverted, it rather depends upon with whom or what one wishes to be intimate, and how one wishes to express it. I'm not aware of sexual dysfunction being an early AD problem.

There are things that happen to the brain that increase sex drive, e.g. some varieties of bipolar disorder during mania, and I've heard of small strokes releasing inhibitions.

"More to ask"? Fire away!

Thanks alan and Lisa
Bravery hasn't anthing to do with it perhaps desperation is a better word.
As far as conversation goes been there done that both with wife and neurowith no positive result mostly just sidestepping.
I think my wife thinks the Vas Dem means that I am looking for some bizzare type of relationship.
not true just normal husband wife intimacy.
The mini strokes and inhibition loss are two things I can identify that I have experienced.
i shall pursue that line for informatio for now.
I was begining to think no one wanted to talk about this ,you have renewed my faith in people.
Puritainism while still very much in evidence,notin total control.

I don't like being intimate anymore,might be due to my breathing problems but I could care less........

I my opinion, intimacy is something that is very important and necessary to sustain normalcy. Intimacy can probably be defined differently depending upon the couple. However, I think it is important for both parties. Sometimes health issues to interfer with what may have been the norm. However, if possible, to whatever degree possible, I feel the intimacy should be sustained.

I was not going to respond to this thread because my previous suggestion (not on the boards) had been for Sven to consult with a marriage counselor. On reflection, given what I know about the ignorance that professionals have regarding dealing with people with early dementia, I thought I had better come up with better advice.

I think our demographic is so new, mid-life people living with early dementia, that we have to discover our own treatments, guidelines, help and support. Certainly there are many mid-life couples struggling with the subject of intimacy.

Here is my own story of how cognitive issues interfered with my marriage. I was married for only five years. Before we married, I told my husband that I had a lot of trouble with my memory. After a short time our marriage ran into trouble. The ultimate issue became a loss of trust which eventually affected all areas of our lives, including intimacy.

Why was trust impaired? Communication was damaged. My husband came to believe I was not sincere because of my communication. Because of my memory lapses, my conversation was not reliable. To put it bluntly, he believed I lied to him. Since I was unaware of the full extent of my cognitive problem, I was unable to correct his belief. Eventually we divorced.

What I have learned, primarily from reading the Caregiver boards and from my own life, is that many if not most family members react to early dementia with anger and hostility, because they interpret the mis-communication and odd behavior as being willful and deliberate. They see the person with dementia as being stubborn, unreasonable, and irrational. It is only after the disease has advanced and they come to understand the true nature of dementia, that the anger and hostility is released.

The traditional reason for lack of intimacy in marriage is due to anger and resentment, which many times stem from adultery issues. I think the challenge will be to look past adultery issues and to examine anger and resentment in married or coupled relationships as they relate to the effects of early dementia. I think the intimacy problems in marriage will be found to be due more to relationship issues than performance or desire issues.

I would like to know what people think of my theory. Sven, is this of any help to you?

Iris L.

No anger or resentment in my home..........

Iris & Sven,

I agree with some of your theories, Iris.

My intimacy went out with my EX!! I would love to be intimate with the right person but right now I don't feel right and have gained weight!

I guess the intimacy thing will have to wait a while longer.

Sven, sounds like you need to discuss this with your wife again!

I think sexuality is a subject that needs to be brought to the fore front. Its what bonds a marriage. If a couple has that desire and ability, I say go for it.

Intimacy, yeh, I remember that feeling now! I haven't even thought about that for two years and I'm only 60! I don't know if it is the AD, the drugs or what but my wife and I are happy! Anyway, poop! Not easy for either of us.

May I butt my nose in?

This is an issue for older AD patients, too, not just you young 'uns.

Sex and intimacy are very complicated issues for dementia patients and their spouses. They have not been studied anywhere nearly as widely as other physical/behavioral issues. Certain things are reasonably well-established, but most lie in a very gray area.

Dementia can cause a loss of libido, as SnowyLynne notes. Or, it can cause disinhibition, as Alan notes. Either of these can happen at pretty much any stage of dementia, depending on the type and location of the damage being done to the brain. Either can be caused, or exacerbated, by the meds that are prescribed. In some cases -- which are quite rare -- the "disinhibition" becomes extreme, i.e., the dementia causes hypersexuality.

Most dementia patients are somewhere in the middle -- still sexual beings, and still craving affection and the physical expression of that affection, often well into the later stages of the disease.

The biggest barriers to achieving intimacy and sexual satisfaction often come from the effect that the dementia has on the caregiver, and on the relationship between caregiver and AD spouse.

I doubt there are very many neuros who are able to effectively discuss these issues. The "interventions" for them are typically more in the purview of a psychiatrist or psychologist, than a neurologist. (Hypersexuality may be treatable with various drugs. However, this is a very sticky issue from an ethical standpoint, and most doctors are reluctant to prescribe meds to reduce sexual urges, even in cases of severe hypersexuality, let alone milder cases of disinhibition.)

Sven, Iris' suggestion of the two of you consulting a marriage counselor or therapist may be the best idea for the two of you ... provided you can find one who has experience working with couples in which one partner has some sort of brain damage -- stroke, Parkinson's, head injury, etc, as well as dementias. They all face many of the same issues.

You and your wife need to be able to talk about what is bothering her, as well as what is bothering you. She may not know how to talk to you about how she is feeling. Very few caregivers like saying things that may hurt their loved ones. She may not even understand her own reactions.

It's hard to find decent papers/articles that discuss such issues, but there are a few at:

http://alzheimers.boomja.com/A...Behavior-114106.html

There's also some good stuff at:

http://alzheimers.boomja.com/R...regivers-114092.html
Rush Manual 2. Communication

Perhaps you could ask your wife to read some of these, allowing her to do so in privacy and giving her plenty of time to think things over before asking her to discuss them with you ... or at least, to discuss finding a counselor or therapist who could help both of you.

I don't know if this fits with this thread but I remember when I read this for the first time and wanted to cry. My husband has EOAD and I've wondered about the intimacy issues we will face a lot.

This was posted by younghope1 awhile back.

As a person with dementia I can share another issue with you as caregivers and that is intimacy. Intimacy is a very difficult one at least for me. I think sometimes that our spouses think that because we cannot carry on a conversation about politics or even about the local news we are too far gone to still share in intimate mements. I can see it in my husband's face as he tries to carry on a conversation with me and sees that I am getting lost in the words a feeling of hopelessness. This person before him that use to be the doer of all things can still carry on very small conversation, can still sweep the floors and make simple things in the microwave but her intellect is so much smaller and everything has to be simplified for the hopes of understanding. There are even times he just throws up his hands because he cannot seem to find the right simple words to make me understand and then if by chance he does get me to understand by the time we have reached that marker I have forgotten what the issue at hand was. There are times that he will kiss me intimately and I feel like a small child treading water because I have forgotten how. The whole time I am thinking to myself, how do I do this? how did I use to do this? does he notice I have forgotten? I feel embarassed because of the feeling of loss of something that we shared that was so special is hidden somewhere in my files but I cannot retrieve it. This doesnt mean that we are too far gone, it just means again that we have to adapt to more hugging, holding hands, holding each other and most of all not letting go.

Tracy Mobley
417-933-2030
Diagnosed age 38, now 44
tiger@centurytel.net
Young Hope The Broken Road www.amazon.com
Camp Building Bridges
http://www.freewebs.com/campbuildingbridges08

It was very brave of her to write such raw feelings.

Sven,
Intimacy is important to us as humans. My mother wants to be hugged. So I crawl in bed and hug her. She relaxes.
I am a widow of many years and I so miss that touch that is so important. I remarried for short time and was having hip replacement. He said that he had not approached me as I was in a lot of pain or because he did not want to interrupt my sleep.
Those were not acceptable excuses for me as that was the reason I married. If I could not have at least that much of his affection then I did not need any of it...too much pain.

Maybe you wife thinks of you as ill and is unsure of how to react. Are you able to talk to her about the need for this very desired and needed human touch of marital intimacy? At a time when we are hurting the most is when there is release in this act and yes I think sex cures most ills..or at least we can face the next hurdle when we can hold onto that hand that loves us.

You are much in my thoughts as I felt your pain the other night on chat.

Please come and just hang in there...we want to help you as you bear this awful burden.
Here is a virtual hug. accept in manner meant.
((((HUGS SVEN)))
Sheryl

To those of you who responded that your marriages are fine after a diagnosis of dementia, do you have any advice for the rest of us? There are others who are suffering in their relationships. Sven is not the only one who is crying out for help.

It's too late for me, but now I can finally understand why my marriage didn't survive. I went to marriage counseling. Marriage counselors are used to dealing with infidelity, addictions and abuse. They're not familiar with early dementia, especially if it is yet undiagnosed. My memory problems were never even discussed at counseling. Perhaps if they were, I might still be married. At least I would have had a better chance.

For those who are in difficulty, perhaps you can use the articles that JAB linked to help your dialogue with your partners and with your counselors if you are in counseling.

Iris L.

Marriages have been studied & studied some more, and I used to read most of the studies. Here's my condensation of all of them: It comes down to commitment. If each partner really means his/her wedding vows, the marriage will survive.

There are a lot of therapeutic techniques for getting marital problems out & working through them. But, nothing can save a marriage if one or both of the partners are holding important secrets out of the fray. I've had couples show up, where one of them was still having an affair . . .

Alan et al,

Hidden secrets and not telling the truth about how one truly feels is what ends a marriage or relationship of any kind.

Be truthful, honest and don't hide your feelings! Do you truly love this person AND are you in love with this person? If the answer is yes, you'll be fine!

Hang onto each other. Intimacy is vital!

Thanks all for your help
Jab I tried to read the refs you gave with some success .
The thing that stood out in bold print was,the fact the with Vas Dem caused by BP High Cholesterol,smoking very possibly be arested in place by the treatment of those causes.
That one statement,renforced a thought I had entertained once during this whole nightmare
,but dismissed.....The changes I have experienced since diagnosis maybe have just been the existing damage showing up.
I have had one TIA since that time and am now on a steady regimen of asprin,that was in april been free of them since .
if......big if that is the case then while not being home free.
It says the future just might not be as bleak as I thought.....
We wait and we see.
Perhaps if this stigma of dementia can be ,if not lifted then at least reduced and perhaps the intimacy problem might also be resolved????????????

quote:

Perhaps if this stigma of dementia can be ,if not lifted then at least reduced and perhaps the intimacy problem might also be resolved????????????

Waylon is right, and he reminds me of a line from a Jimmy Buffet song: "If we weren't all crazy, we would go insane."

Sven, here's one way to look at our challenge: We'll never be what we were before we got dementia. But, we can get better at handling what we have left. And we can even get better at not kicking our own butt too hard when we mess up.

Heck, today I got lost for a while in an indoor shopping mall, Cherry Creek, that I've been going to since 1995. When I realized I was lost, I couldn't begin to figure out a plan until I quit being mad and embarrassed at myself.

So then, in the light of all that's happening, can we have a good life in between the hard times? You bet. There'll come a time when that choice will be more difficult, but we're not there today.

Sven, another thing you might suggest to your wife is that she go to

http://www.thealzheimerspouse.com

They have a discussion forum specifically for caregivers of AD spouses. There are a number of threads on the subject of sex and intimacy from the healthy spouse's perspective. Your wife could do a little reading, and even post any comments or questions she may have if she's not too shy.

If the two of you love each other, and are willing to be patient and understanding with each other and to really communicate with each other, then yes, working together, you can resolve the intimacy problem.

Dear Sven, Alan, JAB et al,

I think trying to understand new roles in life whether it be patient or caregiver is vital. Also, understanding that life is constantly changing as are our roles in them.

Love, affection,intimacy have always been vital to human existence. Also, patience and understanding. Without them we simply can't be human.