A
female
age
41-50,
anonymous
writes:My 13-year-old son was diagnosed with dementia in February, and me and my husband are struggling to cope, especially as there's stay-at-home orders in our state.It's a struggle to cope with looking after him and a 15-year old daughter who feels lonely and is not enjoying virtual schooling and not able to see people or do volunteering.It's stressful all-round and my husband's job as a delivery driver (with an SUV) is our only income; he is not furloughed on that and it's considered essential in our town. He doesn't work for Amazon or any bigname brand, just a regional one.I don't know of any other parents with teenagers who have dementia, and no support network to turn to, and my friends don't know much about this. I never expected my son to get dementia at 13.I'm struggling to know where to turn, need some help since I don't know what to do about caring for a teenager with a dementia; ironically, my parents who are at risk of dementia due to their advanced age, are very active (Dad still does hiking a lot!), and they live in Colorado; we're all the way over in Maryland.I feel so lost and floundering over this; not sure what to do for the best, how to be a good mom to my children. Reply to this Question
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female
reader, anonymous, writes (19 August 2020): In all the years I have been in Healthcare I must admit I have never heard of a child with Dementia. This, I would have thought, would have been taken up by a specialist consultant with it been so rare (in my own knowledge that is). I agree with the other posts, this warrants a second opinion or certainly an honest approach of what you need to expect. My mother has Alzheimer's slash dementia and there is medication to help slow down some of the damage caused by these types of neurological conditions. I can not believe that you have not got follow up care and support or even information. As an interim help, I could suggest that certain types of Dance as therapy, can be beneficial in many ways, definitely worth doing some research in this area if you think he would enjoy it. The music will be of some benefit as well and is often helpful to dementia patients. Here in the UK, Dance is now on a prescription for neurological conditions. England's National Dementia Strategy a 'more compassionate and person-centered approach to care'. I do hope you get the support you need and maybe it is worth setting up or joining some social network to learn or highlight your son's condition. I suggest research in the areas of dance movement therapy or Music therapy (the ancient arts really do meet science). Maybe your church is a venue where you could set up a support group and include the elderly people with dimencia. You need support and sadly should not feel isolated, I am sure you are a wonderful loving mother that has the spirit to move mountains for your son and make his life full of love. I am sending you a rainbow hug.
A
female
reader, anonymous, writes (19 August 2020): Before you label your son you should get at least two more different doctors opions.I always think that doctors are human just like you and me and sometimes yes even they can be mistaken.Sometimes it takes years for someone to get a correct diagnosis.Once you do get the correct one of can be life changeing.So hang in there mom and start making appointments with that second and third opion.Make sure you also use completely different doctors offices for those options though so you know the options will be unbiased.Be strong you will get though all of this.
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A
reader, anonymous, writes (19 August 2020): If ever a diagnosis is made of a long-term degenerative disorder or disease; ALWAYS seek a second professional-opinion from another qualified-specialist. Don't assume there to be a misdiagnosis, simply because you are unable to accept a diagnosis; but do account for human-error.
Childhood dementia is a neurological disorder that I understand affects brain metabolism. As CindyCares explained, it is very rare; and there are over a 100 types of dementia. Childhood dementia can occur in young children as young as nine years old. The typical symptoms include epileptic seizures, retinal degeneration, visual loss, cognitive degeneration, deafness, and impaired motor functions. If it goes by another name at the present; I will not pretend to know any better. If it gives you peace of mind to have it identified by another medical-term, so be it; but expect the diagnosis to be the same medical disorder, regardless of what medical-terminology is used more recently. Although it may not be curable, I understand that it is treatable.
Doctors often use simpler terminology they believe the patient can identify with and/or remember; rather than use tongue-tying more elaborate clinical-terminology. The name may change, but it will be the same diagnosis. It's shocking to get bad-news of a medical sort for a child. The disorder is rare for children; and you may have to search far and wide to find a support-group for a specific disease or disorder, but parents with children who have special needs or chronic disease of any kind can give you comfort and support. This pandemic will not last forever; so you have plenty of down-time to search and do research, to find yourself a support-group. You will cope, once you're able to digest all this. Don't just throw your hands up! In a lifetime you will deal with many challenges and setbacks. Your family depends on your strength.
If you belong to any form of faith and worship; contact your religious-leadership and fellowship for prayer and counseling. Don't be quick to scoff at the suggestion; even if you're a nonbeliever. Many people find solace and comfort in their faith and worship during times like these; and upon receiving disheartening news. If you are a believer, God is the best source of comfort I know. He is what keeps me going, how I cope with the pandemic, and how and why I offer comfort to others. I pray for believers and nonbelievers alike. I will pray for you and your family. God blesses and lets it rain on the believer and nonbeliever. He is kind and merciful. Even when it seems that isn't the case; when looking at it from human-understanding. It certainly won't hurt.
May God bless, and keep you and your family safe.
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A
female
reader, Honeypie + ♥, writes (18 August 2020):
 I'm with Cindy here, I would get a second opinion here.
While it can happen that someone that young develop Dementia it is super rare. Maybe there are other things going on?
I would also look into what kind of care can be available (in home) for your son (regardless of what he is diagnosed with), but again, like Cindy said, with the help of family and doctors find out what you can do and what is available.
As for your older teen. (and also for the younger one) I'd say make sure they get out of the house daily. We ( my 3 daughters and I) get up early and go for an hour long walk. We walk at 7 am because it's cool enough at that time of day and very little traffic. Yesterday we walked to a park about 30 min away and my two youngest got their rollerblades out and zoomed around for a good 45 min while the oldest and I just hung out.
Your parent like to hike, because they know it keeps them "young". and because it's good for them, it would be good for you and your kids too.
Figure out what your daughter is into. Maybe BAKE with your kids, even teens like to eat. So learning/teaching them to bake could be fun.
It's not easy to find out there is something going on with your child that you can't fix, I absolutely get that, I would encourage you to look for forums who can perhaps put you in touch with other parents.
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A
female
reader, CindyCares  +, writes (18 August 2020):
 Ok, this is probably a stupid question, but... are you sure your child has been diagnosed with " dementia ", do you exclude that there has been a miscommunication... and in this case WHO diagnosed him, based on what, and would you consider asking a second opinion?.... Because dementia is not a disease, it is a term that covers a wide range of medical conditions. "Dementia " is not a diagnosis, is a general term for troubles with memory, problem solving and thinking abilities .
For people your son's age ( a bit older, actually, in their late teens ) there used to be, long time ago, a definition of " dementia precox " ( early onset dementia )that °originally ° ( in the 19th century ) used to indicate a chronic psychotic disorder, but then it has become disused since 1925 or thereabout .
I am not being pedantic just to show off ; my point is that the old diagnosis of " dementia " implied necessarily a behavioural deterioration leading to psychosocial incompetence. The same set of symptoms now would probably be called schizophrenia , or schizotypal disorder or ? whathavya, - all serious conditions but , if not curable, definitely treatable and manageable, and not necessarily leading to psychosocial incompetence.
In short, - change psychiatrist ! , find one who uses this century's clinical terminology and mental categories for evaluating his patients. Once you have a real diagnosis, and you know exactly what you are going to deal with, and what you'll have to expect, THEN you can , with the help of your doctors and family, draw a game plan for handling the situation at the best of your abilities.
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