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The Ribbon - Care for Caregivers
Volume 2, Issue 11
June 11, 1999

It seems a heat wave has settled upon us so I'd like to take a moment to remind those who are new to Alzheimer's Disease or other Dementias to watch their loved ones. People with Dementia tend to dress inappropriately for the weather. They may tend to layer clothing or wear winter clothing in summer and the opposite in winter. This can lead to heat exhaustion or heat stroke if they stay outside too long. Make sure they drink plenty of liquids to stay hydrated also. It doesn't take much for someone to become dehydrated in such heat.

In the Better Health Chat on AOL a few weeks back, someone asked about AD and sexuality. This is a topic I haven't seen mentioned before and I'm sure it's something that those who care for their spouse with AD may be interested in. Maybe it may open a door for conversation between those who are dealing with the same issues.


Sexuality

It can seem insensitive to think about your own sexuality when there are so many pressing worries--a chronic illness, financial concerns, and so forth. However, people have a lifelong need to be loved and touched, and sexuality is a part of our adulthood. It deserves to be considered. Sometimes sex becomes a problem in a dementing illness, but sometimes it remains one of the good things a couple still enjoys. This section is for those couples for whom it has become a problem. Do not read this expecting a problem to develop.


If Your Spouse Is Impaired

Despite the so-called sexual revolution, most people, including many physicians, are uncomfortable talking about sex, especially when it involves older people or handicapped people. This embarrassment, combined with misconceptions about human sexuality, can leave the spouse or companion of a person with a dementing illness alone in silence. Many articles on sex are no help; the subject often cannot be discussed with one's friends; and, if one gets up the courage to ask the doctor, he may quickly change the subject.

At the same time, sexual problems, like many other problems, are often easier to face when they can be acknowledged and talked over with an understanding person.

The spouse of a brain-impaired person may find it impossible to enjoy a sexual relationship when so many other aspects of the relationship have changed so drastically. For many people their sexual relationship can only be good when the whole relationship is good. You may be unable to make love with a person with whom you can no longer enjoy sharing conversation, for example. It may not seem "right" to enjoy sex with a person who has changed so much.

When you are feeling overwhelmed by the tasks of caring for a sick person, when you are tired and depressed, you may be totally uninterested in sex. Sometimes the person with the dementing illness is depressed or moody and loses interest in sex. If this happens early, before the correct diagnosis has been made, it can be misinterpreted as trouble in the relationship.

Sometimes the sexual behavior of a person with a brain disorder may change in ways that are hard for her partner to accept or manage. When the impaired person cannot remember things for more than a few minutes, she may still be able to make love, and want to make love, but will almost immediately forget when it is over, leaving her spouse or partner heartbroken and alone. A few such experiences can make you want to end this aspect of life forever.

Sometimes the person you have cared for all day may say "Who are you? What are you doing in my bed?" Such things can be heartbreaking.

Memory loss can sometimes cause a formerly gentle and considerate person to forget the happy preliminaries to sex. This, too, can be discouraging for the partner.

Occasionally a brain injury or brain disease will cause a person to become sexually demanding. It can be devastating to a spouse when a person who needs so much care in other ways makes frequent demands for sex. This problem is rare, but it is difficult to treat when it does occur. Medication is seldom helpful except to sedate the ill person. If the problem persists, you should think about placement out of the home. When the sexual behavior of a person with a demanding illness changes, this very likely relates to the brain injury or brain damage and is something the person cannot help; it is not a purposeful affront to your relationship.

Often what people miss most is not the act of sexual intercourse but the touching, holding, and affection that exist between two people. Sometimes, for practical reasons, the well spouse chooses to sleep in a separate room. Sometimes a formerly affectionate person will no longer accept affection when she becomes ill.

Mr. Bishop says, "We always used to touch each other in our sleep. Now if I put an arm across her she jerks away."

What can you do about problems of sexuality? Like many of the other problems, there are no easy answers.

It is important that you understand from your spouse's physician the nature of her brain damage and how it affects this and all other aspects of behavior. If you seek help with this problem, be sure the counselor is qualified. Since sexuality is such a sensitive issue, some counselors are not comfortable discussing it or they give inappropriate advice. The counselor should have experience addressing the sexual concerns of handicapped people and should clearly understand the nature of a dementing illness. he should be aware of his own feelings about sexual activity in elderly or handicapped people. There are excellent counselors who have talked about sexuality with many families and who will not be shocked or surprised at what you say. There are also some insensitive people posing as sex counselors whom you will want to avoid.


If Your Impaired Parent Lives with You

So far we have discussed the problems of the spouse of a person with a dementing illness. However, if your ill parent has come to live with you, the sexual aspect of your marriage can be badly disrupted, and this can affect other areas of your relationship. You may be too tired to make love, or you may have stopped going out together in the evening and thus lost the romance that precedes love making. Your confused parent may wander around the house at night, banging things, knocking on your door, or shouting. The least little noise may rouse the parent you tried so hard to get to sleep. Love making can turn into hurried sex when you are too tired to care, or it can cease altogether.

Relationships are enriched by all of the parts of a relationship: talking together, working together, facing trouble together, making love together. A strong relationship can survive having things put aside for a while but not for a long time. it is important that you find the time and energy to sustain a good relationship. Make yourself find ways to create the romance and privacy you need at times when neither of you is exhausted.

Mace, Nancy and Peter Rabins. The 36-Hour Day. Baltimore: The Johns Hopkins University Press, 1981


The Dementia Victim's Perspective

taken from THE CAREGIVER, Newsletter of the Duke Family Support Program


At a meeting earlier this summer (1994), several patients discussed their frustrations and sorrow at the reactions of friends, family and community to their diagnosis. They decided to make a list of things they would like others to know about having Alzheimer's disease. They are very pleased and excited with the opportunity to share their thoughts with you.


"What I want others to know......"

I have Alzheimer's! Because I can not remember does not mean I am dumb.
I am not less of a person because I have Alzheimer's. I am somebody.....
I am a normal person, so to speak.
I need to claim myself and my abilities.
No excuses, I am what I am.
Once I admitted I had Alzheimer's, I found myself becoming brave...
I am what I am and that's all that I am. I think of myself as normal.
I am not trying to embarrass you. I do not want to embarrass you.
This is who I am. Accept me the way I am.
I still want to be part of my family.
"Consideration!" Be considerate of me and my feelings. I still have feelings.
I am angry. Why me!!
I am not ashamed.
I need to have a sense of humor about myself.
I am not contagious. You can touch me.
I have something to offer others with Alzheimer's disease..... My knowledge of Alzheimer's disease.


"How you can help me......."

Let me do what I can do. Give me a try.
Please don't ignore me as though I don't exist.
I am a human being. I am not invisible.
Be tolerant of me, but don't tolerate me.
I do not want to be alone, but do not give me a babysitter.
Talk with me. Listen to me. Be sincere.
Educate people.
Don't laugh and make fun of me.
Don't feel sorry for me.
Let me help others.
I have to help myself, but please help me through the rest of my life......


In Passing: Those We Must Remember

From Beciemh

I am very sorry that I am closing this email address with this screen name because I really enjoyed getting the Ribbon very much. My father passed away on January 20, 1999 from Alzheimer's related disease. He just turned 88 years old on Christmas Eve. I have made a dedication for him in the garden which is a wonderful place to visit, I hope it will remain in the archives there. But, for now I need to take leave from the Ribbon under sorrowful regret. Thank you for the wonderful issues with great information thus far and God bless you all.


AS TIME GOES BY

People say that we're alike
In oh so many ways.
That was true before you left,
Back in the "Good Ole Days."
:*` `*:
But now that times are different
And you cannot recall,
I see that look upon your face,
As tears begin to fall.
:*` `*:
We've laughed and cried and shared our lives,
As months and years passed by.
But now you don't remember,
As you sit and wonder why.
:*` `*:
I've Prayed that God restore you,
Or we travel back in time,
So you can pick the memories
Like flowers on the vine.
:*` `*:
Time has robbed your memory
Of such important things.
Soon you'll hear that gentle call,
And fly on Angel Wings.
:*` `*:
But till that time, we'll hold on tight
To good things that we share.
And when the time has come to leave,
You'll feel God's Loving Care.
:*` `*:
No matter what the future holds,
I never will forget,
When people said "We're So Alike"
I'll have Not One Regret.
:*` `*:
And I will still be like you,
And you will be with me.
You will be within my heart,
And your mind will be set free...

Dedicated to my "Little Mama"
I Love You Mom !

Loraine....


Medical News

From LIZA 513

I got the following article from this link:
AGS MEETING: ProMem Improves Symptoms Of Alzheimer's

PHILADELPHIA, PA -- May 25, 1999 -- An analysis of pooled data from a series of trials of Bayer Corp.'s' ProMem(TM) (metrifonate), a long-lasting acetylcholinesterase inhibitor for the treatment of Alzheimer's disease, indicates that ProMem-treated patients experience improvements in cognition, psychiatric and behavioral symptoms and activities of daily living.

These findings were released at the American Geriatric Society annual meeting.

The results of the study, which was based on an analysis of pooled data from double-blind, placebo-controlled clinical trials with 1,201 patients in the United States, Britain and France was to determine how many patients responded to ProMem treatment in any of the three key clinical domains: cognition, behaviour and activities of daily living. An overwhelming majority of ProMem patients in both dose groups (91 percent for the 60/80mg per day, and 89 percent of the 50mg or equivalent per day) responded in at least one clinical domain when compared to baseline over the course of 26 weeks of treatment.

"The beneficial effects of ProMem may translate into clinical benefits across a wide range of symptoms for this population of mild-to-moderate Alzheimer's disease patients," said lead author Martin Farlow, professor of neurology and vice chairman for research, department of neurology, Indiana University School of Medicine in Indianapolis.

ProMem is currently under review by the U.S. Food and Drug Administration for the treatment of mild-to-moderate dementia of the Alzheimer's type. ProMem increases levels of the neurotransmitter acetylcholine in the brain by blocking acetylcholinesterase, an enzyme that breaks down acetylcholine.

Here are some more links to articles LIZA 513 has contributed:
Neotrofin Effective In Alzheimer's Disease Treatment

APA MEETING: Seroquel Improves Psychotic Symptoms Of Alzheimer's, Parkinson's Diseases


Links

From Watrhead

AFTER THE CAREGIVING!


From Psears 123

Dementia & Alzheimer's - A Guide For The Caregiver


From AChamb8829

Thought this might be of interest:
Alzheimer's and depression - Another dimension


Daytime Chat

Daytime chat on web

Can't make the night time chats? Come visit in the NM Alzheimer's Chat room.

Monday, Wednesday, and Friday
12:30pm -2:00pm EST
11:30am- 1:00pm CST
10:30am- 12 noon MST
9:30am- 11:00 PST

Chat Room http://www.nm-alzheimers.org
Editor's note: This is not a Better Health Chat. It is run by the NM Chapter of the Alzheimer's Association. We include it occasionally in The Ribbon since we understand that sometimes it's hard to make the evening chats.


E-Mail Box

From Currby4

I wasn't prepared for the depression and loss that I am feeling. I guess I will get over it. Thanks again for all the care and help you give. Bobbi191

hi all,
just read the recent issue of the ribbon. i really need this newsletter!!!! taking care of my mom is becoming a strain on my family. i am miserable most of the time and when i decided to move mom's bed to the living room my family was like "grandma is gonna sleep in the living room????" i told them it was either that or her and i were gonna take a tumble down the stairs together.
she seems to be stiff all the time and it is hard to get her to walk. but yet if i leave the room she is up and walking around. every day is a challenge and i find myself asking "why me" when i should be saying "why her".
to the lady above, and all others that have gone thru this....how do you just take them to the nursing home?? i want to in the worst way as i feel i am the one dying slowly, but I remember something she said to me when i was young:
"don't ever put me in one of those places" yikes!!!!!
i think the hardest thing is that how your mom was as growing up is far far from how she is now. my mom is gone and some stranger moved into her body.
again I really appreciate this form of information.
sincerely, Laura


From JDunn56760

The Ribbon is made up of so many lovely letters. Hits close to home in many ways. Today's visit to my hubby at his new home he had approbate words. Once in a while they have a lucid moment.

I said "I'm sorry" and he answered "I'm sorry this happened" So it was a sad moment but felt good to hear him once more. Yes, I'm flowing with tears as this is a horrible robbing of our lives. The moment was just that a second or two in my lonely new life. thanks again,Jan


Since our next issue will not be out until after Father's Day, we hope you have a good one. For those who have already lost your father, please take a moment out of your grief to remember some of your good times together. Make it a joyful day and you will feel blessed.

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