Q: DEAR Miss Regina, I myself have recently been diagnosed with Alzheimer’s. I am very confused and frightened of my future, for me and my children. You see, I am only 52 and my two children are 12 and 14. As you can tell I can still read and type. I can do a lot right now. My symptoms have affected my concentration and ability to complete things I start. My short memory is not good but keeping reminders for myself helps. My work is good to me but I can no longer keep up. I need to work as I am a single parent. I have other family here and they struggle with finding work like the rest of us. My question is… Is there anything I can do to prepare my children and rest of family? I do not know how long I have before I am not able to care for my children anymore. Is there something I can do to teach to my children? Thank you, Warmest Regards, 52
A: Hello 52. I am so sorry of your new diagnosis. I know this is scary. I will talk to you more in private but for the sake of the readers here, I will talk about important points you have brought about.
First, I want to commend you for reaching out. There are many reasons to stay connected. More people are becoming aware and reaching out. Angels of the West Indies in St. Lucia is working on a support group for those with Alzheimer’s and other dementias in their earlier stages as the needs are different. You also may be able to continue with any of your social events as you always have. My suggestion is to let your friends know your condition so they can be supportive. Encourage them to become educated. Hiding our diagnosis only makes things worse for us. Society and the world needs to adapt to the changes that are happening and recognize that a greater degree of patience is needed in communication with people whether they have dementia or another condition. Love is needed, not judgement in our everyday dealings with on the go life. You have the power to start showing and speaking up for those with similar conditions. The Alzheimer’s Association and Society actually learn about care through people like you who are brave to give us insight on what it feels like and how you feel when someone is caring for you as you are able to share with your care partners.
Second, you can prepare your young children with education about the disease @http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp or http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=108 .
Education and support is needed in the schools of St. Lucia. All forms of dementia affect the children in many ways with emotions of frustration and depression. I am willing to talk to your children’s teacher and class to help the school get started on helping to support your children and others with family and loved ones with Alzheimer’s. An important message you want to let your children know is that you love them and as the disease progresses you will have brain changes that will make you do odd things. You are not doing it on purpose; it is the changes in your brain. Children can actually have a better understanding of your needs when verbal communication is lacking. They can be such an enlightened part of care when they understand that it is not your fault. One of the goals is to enjoy this journey as much as possible, and spending time with loved ones is key.
Third, your family and friends can come together and talk about a plan of care with you to help you remain independent as long as possible. Being a part of your own careplan is essential. This is a time to let your family know what is happening and how they can support you. What will help, what will not. There is a lot of information from the links above that can help you get started. If you need help with the links notify me and I will help.
Angels of the West Indies is part of a Non-Profit Wellness STL Club and is having an open day on October 17, 2015 at the Creative Health Center 3 Reduit Rd, Rodney Bay from 10:00 a.m. to 5:00 p.m. You are invited to pop in this free event that will host other health services such as health checks and much more. Call 452-7308 for more info.Silly joke, Dementia patient asked the nurse “If breakfast is the most important meal of the day, why doesn’t it come with a cocktail and dessert?” Send questions to firstname.lastname@example.org or whatsapp 758-486-4509