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Old 06-11-2007, 11:47 PM   #1
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Unhappy Dementia Romance

It is three months since my Dad died. It would have been his 90th birthday on Wednesday this week and it is Father's Day on Sunday. He is on my mind a great deal lately and I'm feeling sad. I would have thought that at my age and his, I would feel less sadness than I do about losing him.

My mother went to a nursing home two months ago. She also has dementia but whether it is Alzheimer is in question now. The nursing home describes her condition as 'mild cognizant disability'. She is doing better in the home than she did at home with my Dad as they were both living in a state of confusion and I believe fear as well. We (the children) encouraged them to remain independent far too long. Mom is in a wonderful veteran's funded home which provides a great deal of extra cirricular activity (weekly outings, live music and dancing at least twice a day, games, art classes, etc.). Though Mom is better than she was she still has a fair amount of memory loss, asks questions repeatedly and tells you the same thing over and over again during a visit or phone call. She has met a man in the home and has become quite involved with him. This is quite a shock to us. They both have dementia and we think his is Alzheimer - as he is very similar to my Dad in symptoms. They are like children and don't seem to understand appropriate behaviours. They spend all of their time together and he seems to spend a lot of time in my Mom's room! I have seen them openly display their affection and my Mom talks about him all the time. He has asked Mom to marry him - we are hoping it will pass! My Mom and Dad were married for 63 years! The nursing home staff are quite concerned and have talked to my sister and myself about the situation thinking maybe the man was being a nuisance to my Mom. On the contrary, she seems to encourage and enjoy it.

We have dealt with so much this past year and never in a million years would I have thought we would be dealing with this at all, never mind so soon after my Dad passed away. I am trying to make allowances for the dementia but I feel extra sad about my Dad as I know he loved my Mom so much to the very end and would be horrified to know that my Mom is enjoying the attractions of another man.

Just another day in the life of dementia!

Shirley

 
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Old 06-25-2007, 02:43 AM   #2
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Re: Dementia Romance

Hi my husband also has alzhiemers and shows affection to the caregivers and ignores me his wife of 54 years.He will say oh there is my sweetie give me a kiss . Strange as it seems they love the attention. and need to know they are wanted and loved and important. Your mother is replacing your father because it is easier then knowing he is gone If they are both single the flirting and holding hands is not hurting anything . she really does not know the difference any more as long as they are supervised at all times. when they still have a mate is the hard one to deal with. Does this man have a wife? I get so little back that I try all kind of new things to attract his attention. Take care If it was your dad he may of done the same thing who knows. They are trapped and lonely in there bodies looking for a little bit of love and kindness it beats being combative. Jean

 
Old 06-25-2007, 03:56 AM   #3
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Re: Dementia Romance

Quote:
They are trapped and lonely in there bodies looking for a little bit of love and kindness it beats being combative.
Hello, I am new here, sorry to hear about the loss of your dad, also that your mum has dementia. My mum is 83 and has alzheimers, she has been in a care home five weeks and so far I am happy with her care, I am pleased that you are happy with your mum's care home it makes things much easier knowing they are well looked after, sorry that this is so upsetting for you,and understandable, from your side of the fence, but, I do agree with Jean's reply.I have seen my own mum so distressed with this miserable disease.You know the home is keeping a close eye on the situation and probably the affections from this man has taken your mum to a place in her memories where she was safe and happy,remember, it's the dementia,not disloyalty to your dad. I hope you find some peace soon.HUGS. Kathryn.

 
Old 06-25-2007, 07:53 AM   #4
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Re: Dementia Romance

Shirley...my mom developed a relationship with another client soon after she entered an Alzheimer's facility also. This was a surprise to us, and the caretakers told us this often will happen to those in similiar stages. I'd see them walking hand-in-hand outside...and sit together on the couch in deep conversation...but when we were told they had been found a few times in each other's room, even the caretakers became concerned.

This behavior certainly needed extra monitoring, and I sure appreciated the effort of the caretakers. My opinion...if you are being told that the caretakers...(who view situations daily)...have concern, talk candidly with them and keep open communication.

In our situation, Mom and James convinced each other they had a previous relationship...and the one brother who was NOT red-headed was indeed HIS! Argueing is the worst thing one can do...so this was pretty challenging. When I saw other male/female relationships develop with other clients, I realized how common this happens.

I mentioned before the new movie "Away from her" starring Julie Christie about Alzheimer's that is a must-see for each of us....follows this same pattern.

This too shall pass.......I see caretakers encouraging person-to-person relationships, female/female...male/male...but noticed they keep a careful eye on male/female. I'm glad they are being candid with you...and good for you paying attention! Such a horrific disease this is......Pam

 
Old 06-25-2007, 04:20 PM   #5
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Re: Dementia Romance

I tried a new thing yesterday my husband was sitting outside and I came and sat with him and I said Hi Bob Taylor I'm Jean Taylor how do you do ...And I started flirting with him and telling him that I liked him alot....I asked him would you like to go on a date with me? because I like you alot and we went on this way patting and flirting with each other I know he doesn't remember who I am most of the times so he fell in love with me 54 years ago and I am still that loving, caring , warm person I have always been so maybe we can have a new start. He played along with it and loved it and so did I. I see how he acts with the caregivers because they are doing everything for him most of the time and he wants to feel needed and wanted and attractive. One of my caretakers took his flirting to the next level and really thought he was in love with him well she was gone in a flash so in the home or not there are all kinds of people out there and you never know what there motives are so needless to say it has made me more concerned who is around him and this is one of my worries about putting him in a care facility for just this thing but if I was gone and he found some pleasure in flirting and holding some nice ladies hand I would not mind but not now . He is the Love of my life and I don't want to share one bit of his affection with another women .Alzhiemers or not he is my man. with that said supervision is the key because they can become sexual don't let the age fool you. Jean

 
Old 06-25-2007, 07:21 PM   #6
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Re: Dementia Romance

Jean, Pam, Kathryn

Thank you for your comments and advice. Every day brings a new challenge and I sometimes don't know what to do, or how to respond to my Mom. Her relationship with this man continues and they both seem to want to spend all of their time together. The man is not married fortunately. I live about 4 hours away and was over to see my Mom on the weekend. She has just been moved to a private room from a shared room. She has never been able to be alone and this move seems to have driven her even more to clinging to this man. We had advised the home against this move but they moved her anyway. When I arrived on Friday, Mom was very distressed and cried all day. My sister and I spent four hours with her and as soon as we left she phoned our brother who lives 8 hours away and asked him to come and get her. The next day she was better and by Sunday she announced that she and her boyfriend were getting married ... get this ... because they want to have sex! She is 87 and I know you are right Jean that their ages should not fool us. This is just such a problem for the NH to deal with and for us. What would be the correct response to that!? If we try to discourage them, she becomes more depressed. I don't really think she wants to have sex, I think she wants to replace my Dad, have someone tell her she is beautiful, cater to her and most of all have someone live with her 24/7 so she doesn't have to be in a room by herself. I think she rationalizes that marriage is the answer and by telling us she wants to have sex we might tell her she has to marry this man first.

We are trying to work closely with the NH staff as you have all suggested and let them know these conversations are going on so they might be prepared as well.

Jean, you make some very good points about the need for Alzheimer patients to feel needed, loved and cared for especially by the opposite sex. I'm glad your husband responded to you and you could both enjoy some closeness. Good luck to you - it must be so hard to see you husband decline with this disease. It is hard enough with a parent.

Thank you all for your support.

Shirley

Last edited by savv55; 06-25-2007 at 07:23 PM.

 
Old 06-26-2007, 08:23 AM   #7
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Re: Dementia Romance

Shirley...Please know our shoulders are being offered for you!

I'm really surprised your mother has been moved to a private room with the concerns staff has shared with you. Isn't this room more costly? Did they explain their reasoning? Surely the caretakers are aware of the worries of your family...it was their observations that caused this worry!

When you mentioned about the fella not being married, it reminded me of a beautiful lady who became a client where my mom is. I first met her in the dining room one evening...she was strolling around the room talking softly to each client while carefully straightening their collars and smoothing down their hair. She was dressed in expensive clothes...soft blonde hair pulled back into a short pony tail...diamond bracelets at her wrists. Surely this was a relative of a client! Over the next few months, her decline was so obvious it broke my heart. One day I saw her outside walking with an old fella...arm in arm and coyly looking up at him. They were so happy!

She was the wife of a prominent Toledo doctor...a former model, and only 56 years old. I thought a lot about her family's acceptance of this disease...and how her behavior must have impacted them. My own mother was a hard-working, stay-at-home mom, with many children! We lived out of a 2 acre organic garden, an old orchard out back, and had been raised with homemade bread and pies made daily.

Both of these women had lived busy lives, but very different life styles! My siblings and I grew up in an environment where each of us tried to outdo the other in making our parents laugh..."crazy" antics were the norm...and even encouraged! What I mean is...it took us a while to realize our mother's bizzare actions were not just "her being "her".

I thought about how painful it must be to watch that beautiful lady...who had been so in control of her life...become a completely different person. I wondered how they must feel to see her become emotionaly involved with a stranger...and not remember them at all.

This disease consumes each of us in different ways...ALL of them very unpleasant............Pam

 
Old 06-30-2007, 03:35 AM   #8
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Re: Dementia Romance

Quote:

She has just been moved to a private room from a shared room. She has never been able to be alone and this move seems to have driven her even more to clinging to this man. We had advised the home against this move but they moved her anyway
Hi Shirley,I know from my own experiences that any sort of change really up sets the apple cart.What a shame that the home didn't consider your concerns and how upsetting for your mum, some decisions really make the mind boggle.

Quote:
This is just such a problem for the NH to deal with and for us. What would be the correct response to that!? If we try to discourage them, she becomes more depressed. I don't really think she wants to have sex, I think she wants to replace my Dad,
Shirley, what a miserable disease this is, one challenge after another.I think that the NH would have dealt with similiar before, but I can see how distressing this is to you and your family.Again from experience it is best to go along with your mum, now, depending on her ability to reason what is said to her I was wondering if you said things to fob her off, yet, at the same time, string her along so she thinks your happy for her and support her.Now the big ? what to say.... maybe things like...the man from the government has to file papers, which takes time, we have to wait for a letter...or...she may relate to courtship...have to be real sure mum, don't rush things etc...or...we will have to save up the money first...we'll keep buying lottery tickets, maybe we'll get lucky.I don't know how aware your mum is,so maybe none of this will work. I was trying to imagine been in the same situation and the best way to handle it, with my mum the above suggestions would probably fob her off.Never broach the topic yourself and when she is on about it, smile and be interested,then interupt her by saying, I forgot to tell you.... pick a family member or friend....make something up about them...this may move her along. Hopefully your able to appease her.Try not to stress to much,Take Care. Kathryn.

 
Old 06-30-2007, 04:08 AM   #9
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Re: Dementia Romance

OH Goodness, this is a contraversial subject at the best of times ... so from experience, (and not meaning to offend anybody) this is what I learned (both legally and ethically).

Everybody is entitled to choose to give their friendship and affection to another. It is nobody elses decision, but their's alone. Dementia or not, they still have feelings, emotions, wants and needs, and they still deserve to have them met.

That being said .. let me explain:

We had a man who was very sexually active. We often found him in other residents bed's trying to have sexual intercourse. This was stopped as soon as possible, and (we had more staff on at the time) it was quite successful, especially when we resorted to locking bedroom doors (residents can get out, but nobody can get in) .... now, a few years later, a lady who is VERY 'man needy' moved in. She needs a man. When she joined us, she 'latched' onto this man because he was in a similar in decline .. he thought she was his de-facto and went along with it (nothing sexual, although they tried !!!). However, I found out legally that we were actually going against the law stopping them, because they were CONSENTING ADULTS. Regardless that they have dementia, there was no forced favours, both parties wanted interaction with the other (unlike before, when he was forcing himself on other ladies). HIS family was horrified. What about their decased mother? (Well, she's deceased, isn't he entitled to another relationship or does that stop once you reach a certain age?) .. who's upset? The kids ... not Dad ... but where are Dad's rights? Oh that's right, he's not ALLOWED.

If you weren't allowed to have a relationship, how would YOU feel? Enhance that with Dementia (the magnifying glass thing I talk about) and for them it's worse.

Ok .. so this man was transferred to another facility way, way, way away from us. And guess what? Yup, he forced himself on other female residents until he found a willing one.

And the lady at my facility? Well, she latched onto the man who moved into the original blokes room. HE doesn't want a relationship with this woman, and often calls out "HELP!!!!!! She's back !!!!!!!" ..so he's NOT consenting and so we encourage diversional tactics to keep her away from him (and unfortunately, we're not very successful, she's damn FAST and Determined!!)

So really, it's not affecting the person who wants to hold hands, spoon and kiss and generally be comforted by another. It's the family who think that the other spouse is being betrayed .. deceased or alive!

THEY CAN'T HELP IT !! It's not THEM .. they are not doing this on purpose. They are following a basic instinct that even Dementia can't stop!!!! It's the disease process that has taken them away from you in the first place, but even Dementia can't take away our basic instincts, and one of those is sex !!!

I even went to a seminar on "Dementia and Sex in the Older Person" and got the following:

(...........continued part II)

 
Old 06-30-2007, 04:10 AM   #10
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Re: Dementia Romance

The heart has no wrinkles : [VHS & DVD] / Health Media. Health Media, 1988.

It’s not focussed on Dementia, but on ageing however it is an eye opener to our nursing skills, and dignity & respect of clients. I have seen this movie before, and I do believe it has helped me respect the privacy of others even more.

Jocelyn discussed how “Dementia progress needs changes, existing relationships change, new relationships form. They have the right to be sexually active. Sexuality is a basic need which people with dementia and their carers should be able to express without fear of reprisal.

However, the ethics of dementia and sexuality are poorly defined, however, sexuality isn’t always a matter of it being about intercourse, but cuddles, touch and hugs are still a part of our sexuality and should be encouraged.

The Ethical Issues

Sexual behaviour in dementia raises several ethical issues. Eg: should 2 dementia persons or one and one not be allowed to participate in a sexual relationship? Spousal rights? Other resident rights? The approach to this is poorly defined.

If these people can express enjoyment in the relationship and there is no evidence of coercion by one or the other, many believe the relationship is ethically acceptable.

Education is the key. We must also take into consideration that the facility is their home. As long as they are doing no harm to others, and that it enhances their quality of life, then there is nothing ethically wrong happening. To prevent them is a violation of basic human rights. This is a fine line that needs to be trod on with utmost caution.

We must also ask ourselves WHY are they seeking this attention. Are we reading them incorrectly? Are they undressing inappropriate? Are they masturbating inappropriately? How is their sexual approach? Are they using explicit language? To look further, we must first look at any triggers. Are they hot? Clothes tight? Clothes itchy? Do they need toileting? Are they frustrated? Do they think another resident is a former loved one (mistaken identity). Do they just simply need a hug? Are we misinterpreting their actions? Are they misinterpreting others actions?

Not all aspects of a person disappear with dementia. They have lived with their sexuality a lot longer than they have lived with their dementia.

When sexual events happen, the suggestion is to remain calm. Focus on why. Distract if need be. Head them off in other directions. Avoid restraint! Speak to family and friends and remind them that this is not their loved one, this is the dementia happening. Learn from previous circumstances. Ask around at other facilities about their approach. Seek advice from previous carers, social workers and healthcare professionals.

Society is reluctant to acknowledge elderly sexuality. All adults, regardless of age have the right to make choices about their relationships and to have a private life. If those close to the person with dementia are OK that the dementia is not physically in mentally vulnerable, and that nobody is being harmed, then it should be ok.

Of course, with approval, we need to look at supplying protection. Condoms, lubricants, blood tests, Erotic magazines/movies.

When it comes to two dementia people wanting a sexual relationship, we must also ask ourselves:

Are both parties happy with the relationship?
Are they able to avoid exploitation?
Is their behaviour consistent with the prior beliefs?
Are they capable of saying No?

An argument in point is that a dementia person is unable to qualify a yes or no answer. In this case, we look at their body language. If all signs point to a positive want, then that is taken into consideration. If all signs point to a negative, then that too is taken as factual. Consensual sex – Dementia consent can’t be reliable! However, check their body language! And ask: Is anybody going to be harmed?

If a relationship is to go ahead (remembering, not to violate basic human rights) then we have to respect their privacy and confidentiality which means not blabbing the relationship details around the facility. We need to provide education for a previous partner ... counselling for grief for their loss. If there is a Durable Power of Attorney then they need to be approached and included in the decision making. That being said, the final result cannot be based on our judgements. We do need to make policies and we do need to enforce them. We cannot assume anything until we have policies and procedures put into place.

We also cannot treat a relationship in a facility as a ‘dirty’ behaviour. It is basic human instinct to seek out another for comfort. Dementia doesn’t change that. We need to remember that it is illegal to discriminate. Just because they have dementia doesn’t give us the right to take away their pleasures, and again, it’s all in our approach. These people are individuals and we must remember that! To possibility being a policy and procedure, we need to ask family members when admitting a new resident how they would feel about their loved one forming a new relationship. Ask BEFORE it becomes a crisis situation.

I can't give you the websites, but I can recommend video's:

Freedom of sexual expression : dementia and resident rights in long-term care facilities -- Bendigo, Vic: Training, Health & Educational Media Pty, Ltd.

The heart has no wrinkles : [VHS & DVD] / Health Media. Health Media, 1988.
Love, intimacy and sexuality : challenge the misconceptions that surround the aging process -- [Queensland] 1996
Questions of intimacy / Taylor, Wendy; Pavlou, Maria; Sargent, Delys. -- Hawthorn, Vic.Alzheimer's Association Victoria, 1995.
Search for intimacy / Dr Alex Comfort.
Sexuality and dementia : carers' perspective -- Stirling, Scotland: Dementia Services Development Centre.

If you type into a search engine: “Sexuality & Ageing" you can research this more fully.

Hope I have helped and not offended:

Cheers

 
Old 06-30-2007, 05:35 AM   #11
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Re: Dementia Romance

Like mostly everything else in dementia, our reactions are 90% emotional and only 10% rational. That's why we go into denial, can't admit our parent is losing it, etc. The same for nudity or sexuality - we remember Mom as the authority, the morally righteous person who told US what to do - or NOT - and set an example of age long faithfulness with her one partner. Now - it is impossible for her 'child' of any age to grasp that she now loses all her inhibitions, runs around naked, and more.

My Mom holds hands with another lady patient, they feel close, they enjoy the contact. Mom thinks it is her old friend from childhood. Actually it's another patient recently admitted. We see it as a positive development. If it were a male patient, the same would be true.

No sexuality has been exhibited ... (Mom is really too far gone for that! ) but I can sympathize with children whose parents want to or do have sexual relationships.

This disease really does turn their world upside down.

Thanks for the legal aspect ... of course, they are consenting adults. But can they really consent? Children under 18 are not considered legally capable of consenting, so how could a Dementia patient be legally capable of consenting??

This is a confusing and difficult issue. When you see the numbers as to how many men use Viagra and the many other copies, how can these old geezers still function so well without help? (inhibitions gone?)

Love,


Martha

 
Old 06-30-2007, 10:40 AM   #12
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Re: Dementia Romance

Oh, Wow AngelBear!!....great post and needed info!

We were told the legalities of "couple situations" when mom first started exhibiting surprising behaviors...but your post absolutely covers each aspect.

My own mother is now under Hospice care and this is far behind us, but your information will be very helpful to many........Pam

 
Old 07-03-2007, 07:27 PM   #13
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Re: Dementia Romance

Dear Angel Bear
Thank you for taking the time to provide such a comprehensive overview on this subject. I had not realized you worked in the field until just recently; your insight is so valuable to so many who may face this issue with a loved one. We were not sure how the NH felt or whether they were being fair to our Mom in their approach to "managing the issue". Since I originally posted I have done research on the internet and found a great deal of helpful information on this issue. The best was from a couple of Alzheimer Association sites; they pointed out many of the same rights that you so succinctly described in your post. I have found that information and your detailed post most helpful, even in helping sort out what I'm feeling and how best to respond to my Mom. I'm not sure that the NH my Mom is in subscribes to the same philosophy but in my next meeting with them we will discuss it in more detail and I have some very clear questions now that I will be able to ask them.

My Mom is still seeing this man most days and they do seem to enjoy each others company and comfort. My Mom has been spending a little more time away from him in the last week probably because she is quite depressed and anxious. We think this is a combination of several factors, the move to the private room (not liking to be alone), taking her off Ativan which she has been on for several decades (taken every night to help sleep), and we've learned she has a bladder infection. (I may start another thread regarding the withdrawal from Ativan). We are not trying to stop her from seeing this man as it makes her a little happier and he is quite polite and treats her well. I'm not sure if they will act upon their wish to have sex or they will settle for holding hands, kissing and cuddling, which they like to do (when we are not around or they think we are not).

I hate seeing my Mom be unhappy so I'm grateful for whatever comfort she finds in her new "friend".

Thank you Angel Bear for taking the time to respond, and to all the others who have offered support on this challenging issue. I am still new here and have found you all to be such a wonderful, caring group. It helps so much to have somewhere to go when you just don't know where to turn or what to do.

Shirley.

 
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