Helping Children Cope With Alzheimer's; Early-Onset Alzheimer's Disease

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I know Alzheimer’s is a terrible disease. And just when I think I understand how terrible it can be, it flashes another hideous facet for me to see.

Maybe because of the business I’m in (providing non-medical in home care for adults), or maybe it’s a typical thought of everyone who stops to think about Alzheimer’s, but when I think about Alzheimer’s, I think of someone getting old and forgetful. The key words there are “old” and “forgetful”. We don’t think it so odd that those two words go together. Age is, in fact, a contributing factor for Alzheimer’s.

Today, I received an email about an article on Alzheimer’s. The title of this article is, Talking to Children About Alzheimer’s. For me, the title conjures up images of parents trying to explain why Grandma or Great-Grandma is acting the way they are. Or why Grandpa can’t remember who the child is, but explaining that no matter what Grandpa says or does, he still loves the child.

I had never thought of Alzheimer’s from the perspective of trying to explain it to children. And I imagine that it would be hard for the child to understand, but most of the time it would be something that the child would have to deal with on an infrequent basis because they probably would not live with the person who has Alzheimer’s.

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Early-Onset Alzheimer's

But then, there’s early-onset Alzheimer’s. I have worked with support groups where people are dealing with early-onset Alzheimer’s, but I never thought about it the way I was forced to when reading this article. And it was not pretty!

Before we go any further, let’s look at early-onset Alzheimer’s for a second. When Alzheimer’s strikes (punches might be a better word) someone below the age of 65, it is called early-onset Alzheimer’s. This form of Alzheimer’s is rare and only makes up about 5% of all Alzheimer’s cases. It can strike people who are in their 30’s and 40’s, but is more likely to occur when people are in their fifties.

Imagine someone in their 30’s, 40’s, or 50’s. People in this age range can have young children at home. So, where I spoke earlier about people talking to their kids about Alzheimer’s, we are no longer talking about grandchildren. We are talking about young children who are losing their parents to this illness. That is sad – especially when you consider that memories are lost in reverse, so young children will be the first ones forgotten by the parents with Alzheimer’s. These same children will find it harder to understand what is going on when mom or dad no longer knows who they are.

The article I read began with a statement made by someone diagnosed with early-onset Alzheimer’s disease. She said, “The worst thing is the kids. I don’t know how long it’s going to take before I won’t know them.” What a horrible reality for a parent to have to come to terms with.

Her early-onset Alzheimer’s was diagnosed in 2000. At that time, she was 46, and her children were 13 (son) and 9 (daughter). She passed away in 2008.

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Telling the Children

Early in the disease process they (she and her husband) had spoken to their children about the memory issues that their mother would be experiencing, but they had not shared with the children that the illness was terminal.

The mother describes that discussion to come, two years later, as the “hardest discussion we had to have.”

Two years after her diagnosis she and her husband spoke to the children about this issue. They first spoke to their son who was then 15. They described the meeting as being very tough. After he was told the full ramifications of the disease, their son hugged her and was emotional.

Then they shared the news with their 11 year old daughter. Her response was very different from her brother’s. Outwardly, she was reserved and matter-of-fact. Later she started a blog about her experience and became involved with Alzheimer’s Association activities. After her mother died, she pointed out that her mother had been memory-impaired for half of her 18 years, and that her brother had had four more years of childhood with his mother unaffected by the disease. That’s tough for anyone to take, much less someone so young.

From these two examples it’s obvious that children will respond, communicate and cope differently when faced with a situation as serious as this. Most children dealing with Alzheimer’s will experience the effects of the disease more distantly – grandparent to grandchild. But if a parent has Alzheimer’s, a young child is much more affected by the ramifications of the disease.

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Tips to Help the Child

Let’s look at some tips to help children faced with this situation.

  • A child needs to be assured that there will always be someone to take care of them. It is difficult for them to see someone they have relied upon for care who is no longer able to even care for themselves. This is applicable for grandchildren as well as children, just not as much or as often. When their world is being shaken at the very core, they need someone available to them who is able to provide a steady foundation that they know they can rely on.
  • When sharing information about Alzheimer’s with a child, the message should be tailored to their age and ability to be able to understand and cope with the information being shared.
  • When explaining the disease to a child, provide tangible examples that the child can understand. Since Alzheimer’s is not something as obvious as a broken leg or the measles, it’s best to find ways to help them understand. Explain that the disease is in the brain where it can’t be seen, but it is what is causing “specific behaviors”. Try to help the child process the fact that Grandma would not act the way she does if the disease were not causing her to do so. Explain that Grandma still loves them, but the disease is causing her forgetfulness or causing her to get angry at very small things.
  • The discussions about the illness should be age appropriate to the child. If discussing the issue with a younger child, if you can find someone who is of the same functional level as the person with Alzheimer’s (Grandma), and explain how they are the same, it might be easier for the child to understand.

Keep On Sharing

Alzheimer’s disease is rarely fast. It is a slow deterioration. Therefore, conversations with the children can happen in small bits and pieces as the changes occur. It will need to be an ongoing conversation rather than a one-time occurrence.

  • Alzheimer’s strikes fear in adults, so imagine what a child will be feeling. When the caregiver of a spouse with Alzheimer’s disease is also the parent of a younger child, and that caregiver becomes upset, the child will also. Address those fears by saying something like, “I don’t blame you for feeling upset, because I am too.” Let them know that the feelings are normal and okay. To help them process these feelings, instead of asking the child what is the matter, consider asking, “What is worrying you?”, or, “I think something about Mom is scaring you; what is it?” The goal is to help them acknowledge their feelings so that they can conquer their fears.
  • It is very important to help the child find ways to cope with the situation. When an adult that the child has depended upon, if for nothing else but to be an adult, starts acting like a child or baby, it can be difficult for the child to process and/or deal with. One coping mechanism that can be used is to allow the child to help. I really can’t state it any better than the article stated it, “Children cope better when they feel like they are contributing in some way … No matter what the chosen activity or routine, when children believe they are needed, perform tasks that people depend on and have a place to belong, they can overcome any challenge.”

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Possible Numbers Affected

Earlier in this article, I stated that the incidence of early-onset Alzheimer’s is rare, only making up 5% of the Alzheimer’s cases. What does that mean? I am going to look at the numbers for Americans only because those are the numbers I have; but I would think the numbers are pretty similar worldwide. It is believed that 4 million Americans have Alzheimer’s. This means that 200,000 have early onset. If only 10% have 2 young children still at home, then 40,000 children are being affected by this disease. That really is not a small number when you consider the devastation it can bring.

Because of the nature of genetics, this number is likely to increase. If a parent has early-onset Alzheimer’s, a child is more likely to inherit the genetic code, and the trend has been to develop the illness at a younger age.


I wish that I could end this story with …. And they all lived happily ever after … but the sad truth is Alzheimer’s takes hostages, and accepts no ransom.



© 2011 Cindy Murdoch

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Comments: "Helping Children Cope With Alzheimer's; Early-Onset Alzheimer's Disease" 28 comments

Victoria Lynn profile image

Victoria Lynn 5 years ago from Arkansas, USA

You are so right, homestead. Alzheimer's "takes hostages and accepts no ransom." I'm the administrator over a skilled nursing facility, with a licensed Alzheimer's unit. I've worked around Alzheimer's and dementia for over ten years. It is so hard on the families who have to learn to deal with the illness. And early onset--while we don't have that in our facility, it is very real, and I can't imagine how hard it is on young children. Great hub to raise awareness that it's real! I keep thinking I'll write on dementia and Alzheimer's (I actually co-authored a short book with a co-worker and am trying to find a publisher), but it's hard. I'm surrounded by it all the time, and on HubPages, I just want to escape to something besides my day job. Know what I mean? But maybe it would help others to share what I know about the topic. Maybe one day I will.

This is a great article. Voted up and all the way across--except funny, of course.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

Victoria Lynn - I am working on a book myself about Alzheimer's. It is such a sad illness. I write these articles to help promote our business. Thanks for stopping by!


southernwriter profile image

southernwriter 5 years ago from writer4hire22@yahoo.com is my email address

Very well written and detailed hub. Thanks for the wonderful and helpful information.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

southernwriter - thank you. i'm happy that you found it useful. I didn't like the way the article ended, but there just is no happy ending.

Thanks for stopping by!


ubanichijioke profile image

ubanichijioke 5 years ago from Lagos

A useful, informative and interesting hub. Absolutely helpful. Thanks for sharing. Be blessed


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

ubanichijioke - thanks for stopping by and reading. This is definitely not as inspiring a subject as one of your poems, but a subject that grabbed me and I knew that it needed to be shared. Thanks for stopping by and sharing your comments.


MsDora profile image

MsDora 5 years ago from The Caribbean

Involving the children is a sad but necessary part of the process. Thanks for sharing such relevant . Your ending is very powerful. Voted UP and USEFUL.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

MsDora - The ending was hard for me. I wanted to give hope to those having to deal with this issue, but aside from a miracle, there is very little hope when dealing with this issue. Thanks for stopping by.


RedElf profile image

RedElf 5 years ago from Canada

I think of Alzheimer's as a family disease. I have several friends with family members that are suffering from early onset dementia, which can have similar effect on the family. It is very sad for the adult children, let alone how hard it can be on the younger ones.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

RedElf - that is exactly what I was referring to when I said that it takes hostages and accepts no ransom. It holds so many in its terrible grip. Thanks for stopping by.


Kerry Luksic 5 years ago

Great article. Alzheimer's is a family disease--affecting everyone-spouses, children, grandchildren. I'm an Alzheimer's advocate, writer, and debut author. Just published a memoir in tribute to my mom, an amazing woman who raised 13 kids, a grandmother to 32 and living with Alzheimer's for last seven years. I've had to talk to my 3 kids about this illness--it's not easy, but they love their grandma no matter what! More awareness and more funding must be granted for this devastating disease.

Kerry Luksic

www.kerryluksic.com

Life Lessons from a Baker's Dozen: 1 Mother, 13 Children, and their Journey to Peace with Alzheimer's


thelyricwriter profile image

thelyricwriter 5 years ago from West Virginia

up and useful Homesteadbound. This is such a terrible disease and it is important for the kids to know what is going on. I went through both my grandma and grandpa having the disease as a young teen. It is hard seeing them like that. Your tips are very important and you have did a wonderful job on this article. Thank you for that.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

Kerry Luksic - Thank you for stopping by. Yes, Alzheimer's is a terrible disease. A cure is definitely needed. Thanks!


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

thelyricwriter - that must have been tough on you as a teen. I am glad that someone who has also lived through it agrees with what I have written. I hope it does help others. Thanks for stopping by!


DonnaCosmato profile image

DonnaCosmato 5 years ago from USA

Thanks for this informative hub as I had no idea that this debilitating disease could strike someone so young. These are solid tips and would be helpful to anyone struggling with this situation. Great hub; voted up.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

DonnaCosmato - Unfortunately, it can strike people that young. Fortunately not as often as Alzheimer's in general. I do hope they can help someone. Thank you!


Pollyannalana profile image

Pollyannalana 5 years ago from US

My mom died with Alzheimer's although what killed her was the nursing home being cheap and not giving her recommended medicines and being sent to the ER several times a male nurse told me this (she finally had two heart attacks in one day and I like to always warn everyone to keep an eye on these places) but I would say in most cases no one questions people taking care of these pitiful ones who can't tell. In our family Mom was long having this come on and the small children all were accepting and loving toward her. She was meek and kind to everyone so most loved her although you can see that it does cause fear in some of the young ones and yes we discussed it with them to help them not be afraid and to always treat her kindly and hug her, which she loved. There can never be enough said about this and thank you for coming from another viewpoint. I can't even guess how much I have written on it but after Mom passed away I took it all down but the poems I wrote for her, and I put those at my site. As traumatic as it is on adults children certainly do need help handling it. Great hub.

Polly


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

Losing someone to Alzheimer's is hard. You have my sympathy, Polly. I lost my grandmother to it, and since she raised me, it was the same as losing a mother.

Those with Alzheimer's really do love the children. I was an activity director in a Memory Care facility for a while, and the children always brightened their day.

Thank you for sharing.


qsera profile image

qsera 5 years ago

Alzheimer's at such a small age is shocking news for me. I always thought that this dreadful disease only happens to older people. Thank you for sharing such an important aspect.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

qsera - I have met and worked with several who have gotten it at an earlier age. It is very tragic. And unfortunately, a very inheritable disease.

Thanks for stopping by!


jacqui2011 profile image

jacqui2011 5 years ago from Leicester, United Kingdom

Most people never think of Alzheimer's effect on children. Well written and will raise awareness. My late Gran had early onset Alzheimer's and was in her mid 50's when she was diagnosed. It is a cruel disease and heartbreaking for everyone concerned. I am glad that more and more people are aware of it, thanks to you and many like you who take the time to write about this important issue. Voted up and useful.


homesteadbound profile image

homesteadbound 5 years ago from Texas Author

Alzheimer's is so devastating to the people having to deal with the direct care, that it pretty well consumes them, and they just don't have time to think about such things. I am sorry to hear that this devastating disease came to rest on you and your family. It is such a ... horrible ... disease. Thanks for stopping by and for commmenting.


AdamCollings profile image

AdamCollings 4 years ago from Tasmania, Australia

Thank you for this article. I found this page while researching for a novel I plan to write. In it, one character has a mother with early-onset Alzheimers.

My grandfather had alzheimers before he passed away. Fortunately he still remembered my grandmother and seemed to know who I was. He was in his early nineties.

Your article has opened my eyes to the tragedy of families that are struck with early-onset alzheimers. Thank you for speaking for these people - especially the children.


homesteadbound profile image

homesteadbound 4 years ago from Texas Author

Adam Collings - I am glad that I was able to enlighten you a little bit on the complexities revolving around early-on-set Alzheimer's. Although, Alzheimer's is sad for anyone to get, it is especially hard when early on-set. Wishing you will on your book


MsDora profile image

MsDora 4 years ago from The Caribbean

I had never thought of this aspect (the children) with reference to Alzheimer's. thanks for bringing it so forcefully to our attention. Not only does this disease take hostages without ransom, nobody is free to remain uninvolved.


homesteadbound profile image

homesteadbound 4 years ago from Texas Author

MsDora - Early Onset Alzheimer's does affect younger children than does the "normal"Alzheimer's illness. It really is unfortunate, especially as people are waiting later to start their families after having established a career. I feel for everyone who has to deal with Alzheimer's. Thanks so much for stopping by!


Jason 4 years ago

Horrible doesn't come close to describing it my mom is 9 years in and is well into the end stage. Hospice comes tomorrow we managed to keep her at home my father and i since fractured my back was diagnosed wwity narcolepsy with cataplexy amd lost my job at 30 i moved home my mom was manageable still for the most part i also have serious depression and schizophrenia with past suicide attempts. Im on a truckload of meds and through all the tragedies i went theough my mom was alwYs there for me at this point im completely lost i will not be hear for hospice when they show up as i can't handle it as of late i help where i can and when others arent around to see the tears rolling down my face everyday. I wish my mom was still there but she is bedridden and cries and yells gibberish early onset al heimers is the worst disease the most demented i feel like my mom goes through the mental torment i go through with the things she says or thinks she sees and hears and meds don't help her where for me my psych say ive responded semi fairly and jumps me for not having counseling as i can't afford it my father pays for me to see him and doesn't think talk therapy helps in my situation it would maybe if social security ever approaves me for all my problems i can find a way to cope with what my mom is going through and improve so i don't need disability. Sorry for the length i haven't spoke in days and i just wanted to really emphasize that early onset alzheimers is cruel and debilitating to the person and emotionally on the family even more so in my situation


homesteadbound profile image

homesteadbound 4 years ago from Texas Author

Jason, so sorry to hear about your mother. I hope that you are able to find some comfort somewhere, because you do seem to have a whole lot on your plate. Good luck and blessings and peace to you as you try to deal with the circumstances you find yourself in.

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