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The Ribbon - Care for Caregivers
Issue 22
November 13, 1998

I know that no one is superstitious out there right? It's Friday the 13th. That's a good thing. It should make you think positively so that good things happen. I found a couple of articles pertaining to our question in the last newsletter. I will print your answers following the articles.


Dementia Information For Children and Teens

What is dementia?

Dementia is a name given to a group of symptoms. There are several diseases which cause dementia. People with dementia have memory loss and difficulties with speaking and understanding others. They will have problems with thinking, recognising people (even family members) and will forget what simple objects are used for (like a knife or fork).

For a long time the person may look healthy on the outside, but on the inside their brain is not working properly.

What's the difference between Alzheimer's disease and dementia?

There are several diseases which cause dementia. We hear more about Alzheimer's disease because it is the most common cause of dementia.

Is dementia a mental illness?

No. It is a disease of the brain. Our brain is our control center and everything we do and say and think is controlled by our brain. When the brain is sick, we have problems with all our actions (remembering, speaking, understanding, learning new skills, walking, etc).

Is dementia something all older people get?

No. We all forget things from time to time, especially if we are stressed, and maybe a little more if we are older. An example of something an older person without dementia might forget is where he or she put their car keys. A person with dementia might forget what the keys are even used for.

Only about 2 or 3 people out of 100 people who are between 60 and 65 years old have dementia. However, as people get older, their chances of getting dementia are higher. For people 85 and over, 20 out of 100 have dementia.

Can younger people get dementia too?

In rare cases, people in their 30s, 40s and 50s can get dementia.

What problems do people with dementia have?

Not all people with dementia will have all these problems. But here are a few things that can happen:

  • Increased forgetfulness
  • Not able to learn new information or follow directions
  • Repeating the same story over and over and asking the same questions many times
  • Difficulty finding the right words or completing a sentence
  • jumbling words or phrases (not making sense)
  • losing things, hiding them or blaming others for stealing
  • confusion about the time of day, where they are or who others are
  • fear, nervousness, sadness, anger and depression
  • crying a lot or becoming silly
  • forgetting how to do every day tasks such as cook a meal, feed themself, drive a car or take a bath.

Can you die from dementia?

Yes. Unfortunately there is no cure for Alzheimer's disease and other dementias. Over time, the disease only gets worse. It is the fourth biggest cause of death in older people.

How long does it last?

Some people can live up to 20 years after they show signs of Alzheimer's disease. But the average number of years they live for is eight.

How do doctors know someone has dementia?

There is no one test. Several medical tests must be done as well as information given by the person's wife, husband, daughter, son or someone who has known them for a very long time. There are some illnesses which might seem like dementia but are treatable. If these are ruled out, the doctor may then be able to say that the person has a particular type of dementia, such as Alzheimer's disease.

What causes Alzheimer's disease?

There is much research happening throughout the world,but still we do not know the cause of Alzheimer's disease. However, we do know that many small strokes cause the second most common form of dementia, which is vascular dementia.

How does dementia affect children and grandchildren?

If someone in your family has dementia, the disease affects you and other family members, even if you don't live in the same house as the person with dementia. It can be very upsetting and stressful. You may experience some confusing feelings and not want to believe that this is happening. This is very normal.

You may feel upset that your grandparent or parent whom you love very much has become like a stranger to you.

If the family member with dementia lives in your house, it may mean you miss out on some care and attention, or that you are asked to take on other jobs and responsibilites. You may no longer feel like a "normal" family. You may feel angry or resentful that your parents are too busy and no longer have as much time for you.

Caring for a relative with dementia can make your parent or grandparent feel stressed, tired and worried. Sometimes this may make them cranky or short-tempered with you. Try to be understanding of what they are feeling too.

You may not want to have your friends over to your house any more because you are embarrassed by the person with dementia's behaviour. If you are able to learn more about the disease, you can then explain it to your friends. Then, it might still be upsetting in many ways, but might not be so frightening.

Are there activities kids can do with people who have dementia?

Yes. Safe, simple and quiet activities that involve repetition are best, such as folding the washing, brushing the person's hair, rolling a ball of wool, walking, gardening or looking after a pet. Often people with dementia can remember things from long ago, but not things from just a few minutes ago. You might look at a family photo album with them, or play old songs and music they might remember.

The person may only be able to concentrate for 20 or 30 minutes, or even less. Stop or change the activity if they become anxious or distracted. Even though they may not recognise you, your love and understanding can be a great comfort. Give them a cuddle, a kiss, stroke their arm. The best help you can give is reassurance and to let them know that you care about them.

What can kids do to make life easier for the person with dementia?

Learn all you can about the disease. Be calm and patient. Be loving. Be involved. Be understanding. Help around the house. Take care of yourself. Explain the situation to your friends so they know what to expect.

What if the person gets angry?

Don't argue with them because they don't understand when they are wrong. Their anger is the result of the disease and not something you did. The best thing may be to leave the room and return later when their mood has changed.

Handling your own feelings

You must understand that all the feelings you have are normal. It is a great loss to watch a grandparent, parent or other relative with whom you used to be very close, forget who you are and become helpless. You must remember that even if the person becomes angry, cries a lot, does strange things like putting a jumper in the oven, they have a brain disease and cannot help what they are doing. These things are beyond their control. You must not blame yourself for having upset them.


Helping Children Cope With Dementia

Although the vast majority of people with dementia are elderly, in many cases there are young children and adolescents in the household or close by who are strongly affected by the illness of someone they love. It could be their grandparent who is affected by the disease or, in early-onset cases, their own parent. At a time when they are trying to cope with their own growing up, they find they also have to cope with a family member who is ill.

Communicating Feelings

The most important thing you can do to help your children or grandchildren cope with dementia is to be willing to listen and communicate. They need the opportunity to ask questions and express their feelings without fear of repercussion or rejection. A non-judgmental atmosphere will help them to become more comfortable with discussions of the painful changes taking place in their lives.

Remember, young children may not be able to take in too much information at one time - keep it simple and try to respond to their questions at their own level.

Adolescents are often good at expressing themselves and their feelings, but don't be surprised if they do not initiate discussion. Watch for clues in their behaviour that something is on their mind and then try to talk openly. Some young people may have problems talking with parents because they don't want to worry them or are afraid of making them sad or being a burden. They may prefer to talk to their peers or to counsellors.

Young people will react differently depending upon their age and stage of development and on how important the person with dementia is in their lives and how often they interact with that person.

Questions Children May Ask:

  • What's happening to Grandpa or Grandma (or even to a parent)?
  • Why is it happening?
  • Why can't medicine make them better?
  • Did I do something to make them sick?
  • Will I or my parents get it, too?
  • Will they die?
  • Who will take care of me?
  • What can I do to make them better?
  • Why is everyone always so sad and angry?
  • Why can't things be the way they were?

Emotions Young People May Feel

  • sadness
  • overwhelming sense of responsibility
  • resentment
  • unwillingness to take responsibility
  • helplessness
  • despair and hopelessness
  • jealousy/ tension / stress
  • denial
  • frustration
  • anger
  • guilt
  • fear
  • embarrassment

Behaviors Children May Exhibit

  • Withdrawal - staying away from the house as much as possible, refusing to visit the person with dementia
  • Acting out - radical changes of behaviour such as staying out late or using drugs
  • Displaying suicidal tendencies or talking about how he or she might as well be dead
  • Pretending everything is great - putting on a happy face
  • Having psychosomatic illnesses - such as repeated headaches or stomach aches
  • Sleep disturbances - insomnia, nightmares, sleeping during the day
  • Eating disorders - overeating or refusing to eat
  • Performing poorly at school
  • Running away - the home situation may become too much
  • Wanting the person with dementia to disappear - talking about how life would be better if they were no longer around

Some General Guidelines:

  • Let your child or grandchild know that you care and that you understand and know this is tough on them as well.
  • Give them permission to say what they really feel - don't be afraid of their feelings or your own.
  • Help them confront and deal with their worst fears - sometimes these fears may be unrealistic but they are certainly very real to the child.
  • Try to maintain as much family structure as possible - continue to do some of the things you used to do as a family as this will give your children a feeling of security and self-confidence.
  • Try to spend some time with your child each day - it is important that they continue to have separate time when they are the focus of your attention.
  • Make family plans and carry them out - persist, even though you may not get overwhelming enthusiasm for your suggestions.
  • If you are the primary carer of your spouse or parent with dementia, access respite care services to give yourself a break, as well as your children.
  • Encourage teenagers to get on with their own lives and make their own plans.
  • Deal with conflicts and problems - don't brush them under the rug.
  • Set aside special times when the family can discuss responsibilities and problems, but try not to make "helping" the overriding concern.
  • Notify your child's teacher or school counsellor that there is a serious illness affecting a family member - check with the school from time to time to see if the child has experienced problems you may not have heard about.

Take care of yourself so that your child does not think that you might get sick, too.


Your Answers

From cecjb@swbell.net

Telling my children about Mother having Alzheimer's was not easy. We had speculated for more than a year that this was what was going on with her, but when the doctor used the "A" word, it was not easy. My son was in the 6th grade and my daughter was in the 5th grade. They both listened carefully, asked question such as "Will Granny forget who I am?"; "What will we have to do to take of Granny?" My daughter was especially concerned. My son was very quiet. I asked him if he had any questions. His question was "Mom, do you have any interest in getting married?" (I am single.) "No." I replied, "Why?" He reasoned, "I think you should find someone and get married because I just don't think I could take care of you when you get Alzheimer's, and right now, I am too young to have to take care of you." God, bless the children for their honesty.


From Katygal@aol.com

It was very easy to explain to my children and my grandchildren about "Grandma". Since we are a close knit family, they were around her in the early stages of dementia. Everyone could see her rapidly going down hill. They all knew that her moving to the nursing home was really an act of love and concern. Now is has around the clock care and if she falls or hurts herself, she has someone. (This is not to say that I don't feel very guilty, that I couldn't afford to quit my job and take care of her.)


A Note of Appreciation

We'd like to take up this space to do something that isn't always done. We want to say Thank You to the hosts of all our chats. You all help us so much with your support and advice. We tend to forget sometimes that you are going through the same things we are. Thanks to BHostSTS, BHostAC, BHostRidl, AlzJane198, and last but not least BHostMad.


In Passing: Those We Must Remember

From JayaeP@aol.com

thank you for again sending me the ribbon. this months article was especially helpful for me, as my fathers dementia is caused by Parkinsons diseasse...
its good to know there are other caring people out there.

thank you
Jinny

It was shortly after I wrote that note, that my dad died..It was Oct. 6, at 10:20 pm..

We were given little warning, he had eaten his dinner, and when the aide and mom were helping him into bed, he'd gotten pale, almost gray. We made him comfortable, his breathing easied, and I told my daughter to call his brothers. My daughter and I were looking at him thru the eyes of nurses, so we knew he was near his end. We had to dicuss with mom if she wanted him to go into a hospital, which would maintain him on life support, which could be for a very long time. This had never been discussed, because they came to live with me after a fall that caused dad's mind to cloud.. Thru all this, the responsibility for all the decisions was placed squarely on me, since mom has been depressed for years, and unable to make even the simpliest decisions. I knew I could take care of them both at my house, but how could I manage with her here and him somewhere else, plus my job and my kids??? We called a priest, my uncle was there, as were my 2 daughters, and then he started to look like he was going to be OK. When the priest left, he told us to call and he would come back whenever we needed him... It was less than 20 minutes later that dad closed his eyes for the last time...He was holding my mom's and my daughters hand, and I was holding him.....He died a peaceful, quiet death with dignity, surrounded by his loved ones. His death has eased his suffering, because he had always been a strong, independent, stubborn man, and he had become completely dependent, unable to do much more than feel himself...We were spared having to watch him suffer, and for that I will be forever greatful...

This letter has been hard to write, and forgive me for rambling. While I couldn't make it into the chat's as much as I'd have liked, knowing you were there was a great comfort...Now I am left caring for a parent with a different mental problem, depression..I may still come to you all for advice again soon...

Thank you for listening. My prayers to all of you, and especially you Joan, I share your pain.

Jinny


From SewingBabe@aol.com

This prayer was shared with me by the lady whose husband died recently. Ann1830 used to be in the group more when Bill was here. She and I used to write back and forth on occassion. Her husband's name was Walt. Someone who gets the newletter requested this prayer and when I got it I thought the rest of you would like to have it as well. Karyn

An Alzheimer's Prayer
Dear Lord, we pray
For those who have died of Alzheimer's Disease Peace
For those who are now victims of Alzheimer's Dignity And Comfort
For the Alzheimer's care givers Compassion And Patience
For the Alzheimer's disease families and friends Strength and Courage
For those who seek the causes, cures, prevention, (delay) and treatment of Alzheiemer's Disease ...
Your Guidance and Protection
For the hope you have given us... our Thanks.
Amen
-attributed to Al Garfield


Medical News

From Alzjane198@aol.com

Galantamine not a cure is to help with cognic cells, Just like (Aricept) but seems to do better. Janeson Research out of Titusville N.J. Call for more info and to see where they r testing 1-800-57STUDY our sheets did say maybe couple months. If I were u I sure would call.

Note: This new drug has been discussed several times in chats.


Happenings

There have been some problems with The Ribbon website. Xoom has had a few problems. Kevin, Weather91, has been on top of the problem and is communicating with Xoom. Keep trying to access because sometimes it works. If the problem continues, Kevin is considering moving the site. We will keep you updated.

Welcome to The Ribbon (http://www.theribbon.com)


From SewingBabe@aol.com

Hey everyone,

I wanted to share some good news with you all. Today one of the big papers in town called about doing a story on my intergenerational program. It is a part of a neighborhood focus piece and they want to focus on our center because of our volunteer program that has moms and their little ones coming to our day center to visit. I am so excited I jump into the air every now and again.

YIPPPPPPPEEEEEEEE!!!!!!!!!!!!!!!!!
Karyn


E-Mail Box

From Slats2@aol.com

I remember giving my father's eulogy and saying to family and friends, "Seven years ago we didn't know the word Alzheimer's, and today we are here to say good bye to my father who passed away from it."...How far things have come since losing my father to this debilitating disease....In 1986, when my father was being examined and tested at the Veterans Hospital in California, the doctors weren't sure that he had Alzheimer's. And only by examing the body after death would they know for sure. Insurance companies did not cover this disease, and they labeled it as Dementia.

Talking with Karen Menges, I have found out just how far we have come working with Alzheimer's patients, and due to your support group, and "The Ribbon". We didn't have anything like this when my family was taking care of and dealing with my father. It was a very lonely road we traveled, asking and begging for every little bit of information that we needed.....You are doing a GREAT job, taking care of each other, and getting vital information out quickly. From someone who had done this the hard, I give you all lots of credit. Please know my love and prayers go out to each and every one of you. Due to your efforts this will become controlled, and maybe stopped. Your doing a wonderful job for each other, and the families they are caring for. Micki Slattery-slats2@aol.com


That's all we have room for this issue. Our Thanksgiving Issue will have the responses to our Special Issue along with some nice poems we've received. We leave you with this Good Thought.


People will forget what you said.
People will forget what you did.
But people will never forget how
you made them feel.
~~author unknown~~


Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)

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