TIPS TO HELP CHILDREN DEAL WITH A GRANDPARENT WHO HAS ALZHEIMER’S (DEMENTIA)
When a grandparent or a senior, develops Alzheimer’s disease or another form of dementia, it truly has a devastating impact on the whole family — even the children. But, what happens when that grandparent receives their diagnosis when they are only 50 years young, just as the grandkids are starting to grow up? It’s called “Early-onset Alzheimer’s” and it is cruel, heartbreaking, unforgiving and challenging. Sadly, this is exactly what happened to my wife, me, and my family, and this is the absolute hell we’ve been living through for the last eleven years.
Currently, there are millions of people in the U.S. struggling with Alzheimer’s, and 200,000 poor souls with “early-onset.” These numbers are projected to triple by the year 2030, and quadruple by the year 2060. This can, and will, cause an economic crisis like no other. Despite researchers best efforts, a cure is still decades away. This disease sucks, plain and simple, and it’s even worse when it happens to someone so young. My wife was highly educated, worked in education, and was very athletic. The disease does not run in her family, so what the F happened for her to get this life-sucking, nightmare? Let’s get one thing straight. “Alzheimer’s does not discriminate!”
Children may be anxious, nervous, confused, frightened or even angry by an Alzheimer patient’s symptoms and awkward, unusual, behaviors. For example, a grandchild may struggle to understand why their grandparent doesn’t remember their name, accuses them of bizarre things they didn’t do, cries or laughs uncontrollably or disrobes in front of them. Once, my wife walked out of the bathroom with no pants or underwear on, just wearing her shirt, and my seven year old grandson Finn looked at me and said; “now that’s something I’ll never be able to unsee!” But conversely, my ten year old granddaughter Winnie, who is mature beyond her years, got up, went to my wife, took her by the hand, and said; “ Nana, it’s really cold outside, you’ll freeze your butt off if you don’t have pants on,” and then proceeded to help her get dressed. Winnie and my wife are BFF’s, and the love they share is immeasurable. Every child will handle it differently.
families seriously need to talk openly about this disease and the impact it has on their loved ones instead of shielding children from this harsh, brutal, reality.
- BE HONEST, USE AGE-APPROPRIATE LANGUAGE WHEN TALKING ABOUT ALZHEIMER’S OR DEMENTIA
There is still so much that we do not know or understand about “Alzheimer’s” from a medical standpoint, so navigating a way to explain this condition to a child can be challenging. I have found the best place to start is by providing a very simple, straight-forward, definition of Alzheimer’s disease that focuses on a few key points: a) It is a disease that affects the way a person’s brain works and it is NOT contagious. b) There is no cure for Alzheimer’s, but there are some treatments that might, but are not guaranteed, to help improve certain symptoms. c) The symptoms like not remembering their names, forgetting how to eat, memory loss, disorientation, extreme difficulty communicating, and severe changes in mood and behavior will get worse over time.
Parents can choose to provide more or less details, depending on how old the child is and their degree of comprehending stuff. With younger children, explain to them that grandma or grandpa’s brain is sick. (that’s how I explained it to my grandchildren) They may look the same on the outside, but inside their brain is changing.
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2. R-E-S-P-E-C-T . . . TEACH THEM HOW IMPORTANT THIS IS!
I cannot stress this enough, respect is very important in caregiving. Unfortunately, that is not always the case or even mutual between caregivers and loved ones/care recipients, especially when “Alzheimer’s” has twisted a person’s judgement, mannerisms, thought process and moods. It is vitally important for children to understand that any form of disrespect will not be tolerated. Yes, even if their grandparent is the one acting out because of their condition.
If grandma or grandpa starts having an episode, gently explain (or try, there’s no guarantee they’ll even understand you), that you’ll visit with them later when they’re calmed down and then take the child and remove him/her from the situation. This was a tough one for me because not only did I take care of my wife full time for eleven years, I also watched (still do)my grandkids five days a week while their parents are working. They had a front row seat as they watched their nana (who they love dearly) deteriorate over the years. Emphasize to them that everything bad, silly, or awkward, their grandparent’s do or say should not be taken personally because of their special circumstances, but also that they do not need to put up with abusive or inappropriate behavior. Tell the child to walk away and find an adult if they ever feel uncomfortable, threatened or disrespected.
Keep this in mind, even if a person with “Alzheimer’s” is reprimanded and their caregiver sets firm boundaries, there’s a good chance that they may not even remember acting out and being a jerk. Hell, they aren’t even capable of controlling their behavior. Alzheimer’s patients and loved ones who get easily agitated, abusive or inappropriate, should have very limited contact with young children unless it is fully supervised.
3. TEACH THEM TECHNIQUES TO DEAL WITH CARING AND COPING
My wife experienced terrible “sundowning” episodes, but luckily didn’t have hallucinations. Sundowning is a group of symptoms that occur in someone with memory loss that can start around dinnertime and continue into the night. No one knows for sure why it happens. I found the best way to deal with this was to re-direct her attention towards something else. Often times I would use music as a deterrent. I taught these tricks to my grandkids and for the most part they worked. When my granddaughter was nine and my wife would start exhibiting signs of an episode coming on, she would take my wife by the hand and say; “nana, come sit on the couch with me and I’ll read you a story.” And she would read her nana a story from one of her books or from one of the many different science books she ordered online. Her level of maturity, empathy, and pure love, is well beyond her years. Our understanding of Alzheimer’s disease and how to interact and make a connection with dementia patients has changed a great deal through the years. Instead of “reorienting” patients, validation and re-direction are the best techniques for handling difficult behaviors.
If one of your grandparents thinks they are at a train station waiting to board the train to go to Tokyo, correcting them or arguing with them only causes more confusion, fear and can really piss them off. You have to step out of your reality and enter theirs. If they claim to see farting, purple, monkey’s in the room, then you see them too.
Again, keep driving home the fact that grandma’s brain doesn’t work properly and it’s causing her to see and truly believe things that aren’t there or true. This (validation) is a great way for kids to use their imaginations and see the world through grandma’s eyes.
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4. DON’T GO IT ALONE, SEEK OUT SUPPORT!
You are without a doubt going to have days that you wish you could get in your car and just keep driving to wherever your car takes you till it runs out of gas. At times, you may feel like your going to both physically and emotionally snap and have a nervous breakdown. These feelings are completely normal and are called “caregiver stress.” So, whether you reach out to your friends, family members, a mental health professional, or an online or in-person, caregiver support group, it is important to remember that there are plenty of supportive resources available to you —use them! If you still feel like you need some help talking about Alzheimer’s with your child/children, look for age appropriate books on the subject. The Alzheimer’s Association has compiled a list of children’s books on Alzheimer’s along with other educational materials that can help guide your conversations.
Sadly, I had to place my wife in a nursing home in April of 2021, after taking care of her for 11 years. In Feb 2021, I found her walking outside at three in the morning, no shoes or jacket on, and she was going to catch the school bus. I knew the time had come for me to face reality and understand that I had reached the part where I needed the professionals to take over now as I was not professionally equipped to handle that level of care. It was “The Most Difficult Decision I Have Ever Had To Make!” I cried and sobbed for days. It’s been 11 months and I am still struggling with her not being here with me, even though I know she’s very happy and safe where she is. It’s just not fair, not that young. We should be planning our retirement trips and trips with the grandchildren, but now the only thing I plan is what day I’ll get up to see her.
Let the children vent to you, you can’t let it sit and fester in their heads. They are just as sad, just as angry, and just as frustrated as we are.
Peace, Light and Love to all,
Namaste, Jim
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