My mom is in her 16th year with dementia and is now declining rapidly at age 74. I was a 24/7 caregiver and have been through placing Mom in a nursing home at her request. I am also an administrator for Memory People, a support group for families dealing with dementia. Along the way I have learned a lot and would like to share with you. Please feel free to share these insights with others as well; it's all about awareness.
Dementia can affect anyone
Dementia does not care about race, color, religion, gender or age. My Mother was 58 when we knew something was wrong, but due to her age, dementia was not on our radar or the doctors’. She was not diagnosed until age 63. I don't know how many years mom struggled before we realized she was sick
Dementia is much more than memory loss
Some of the early signs that we missed were mom having difficulty completing her job tasks. She was working until midnight, struggling to do simple tasks that were previously not a problem. She was getting lost driving in her own hometown and could not remember where she parked her car.
Behavior and personality changes were obvious, long before memory loss
My mother was always a very gentle and kind person, then we started noticing that she was always angry at one person or another, usually a family member and a male. Mom suddenly got very vocal about her "hatred" for no apparent reason, even of people she had loved for many years.
Making poor decisions putting yourself in danger
Mom picked up a stranger trying to find her way home. Mom loved to shop. However, even though she was once very good at managing her finances, she soon found herself in a mountain of debt. She became an obsessive compulsive QVC shopper.
Shoplifting with a smile
I used to go shopping with my mother at least once a month. Mom was big on morals, values and doing the right thing. On several occasions mom would walk out of stores with rings on her fingers, or slip an extra outfit in her bag that she did not pay for. This was not her character and she thought it was funny. I didn't know what to think.
Obsessing about the past
Mom's first love was in the military when she was a teenager. He was from Kentucky and told her he had to go home but would come back. In those days women did not chase men, and mom never heard from him again. My grandmother saw how much her daughter was suffering so she reached out to the man’s church community only to find out that he was expecting a child with another woman. Almost 40 years later my mother became obsessed with this man, and she and her girlfriend took a road trip to track him down with his wife and family. To her surprise he was no longer the handsome young military man that she expected to see. Like everyone else he had aged. This was a total shock and disappointment, and the trip was totally out of my mother's character.
Change in appearance
Mom used to be a fashionista. She had a beautiful wardrobe and was always dressed to the nines. Her nighttime pajamas were as beautiful as her daytime outfits. When mom came to live with me I gave her my usual pajamas, sweatpants and a T-shirt. I thought this would be temporary but she had lost her interest in her nighttime apparel. I thought this was strange but didn't really give it much though at the time.
Dementia patients are not stupid
Mom was the first to know she was not well. She asked if she could come live with me because she was struggling long before we noticed anything was seriously wrong. Dementia patients should be told of their diagnosis. They already know they are sick and should be given the opportunity to express their wishes about their care from beginning to end while they still can. Mom insisted on placement once diagnosed as she did not want to "burden" her family; she made it very clear what her end-of-life wishes were. Some patients remain in denial but many do not and they have the right to know, just like people who are diagnosed with any other disease.
Denial among family members is common
If you are a very close relative or friend of someone with dementia, you may try to make excuses to protect your loved one. I certainly did. My husband and daughter both expressed their concerns about my mother's behaviors. My husband was the first to notice mom was having difficulty bathing. I didn't believe him. My young daughter was complaining that her nanny was being mean to her. I didn't see it but it was true. Mom would play with my daughter and that usually ended up in a fight. This was certainly the disease not my mother.
Dementia is terminal, but the journey can last years or decades
We had many, many good years with mom, once she was diagnosed. The right support system enabled mom to lead a very good and productive life for many years after her diagnosis. If you did not know my mother, you would never have known she was sick. The progression is inevitable but it does not happen overnight.
No two dementia patients are alike
There are no medications to slow, stop or cure dementia. There are medications to help with the symptoms but each patient will have a different reaction to these drugs. What works for one may not work for another. It is about trial and error and finding the right balance for your loved one. As the disease progresses it becomes more about quality than quantity. If a doctor is not helping or giving you the time and information you need, then find a new one. What's most important is keeping your loved one safe, pain-free and content. Don't sweat the small stuff. Make the best of every day.
Dementia is a roller coaster ride
During the journey there will be many ups and downs. Knowledge is power. Learn as much as you can. Get your loved one’s affairs in order while they are still able to make decisions. See an elder attorney as soon as possible. Just when you think you have this under control, dementia will show you who the boss really is. Be sure to take care of yourself as well as your loved one. Surround yourself with supportive people, join a support group in person and/or online. Finding Memory People on Facebook helped me deal and understand what mom was going through. No, there is no cure, but knowing you're not alone and having a safe place to share and learn makes all the difference. You will be emotionally and physically drained. Ask for help from anyone and everyone. You will need it.
Guilt has no business with this disease
There is no rhyme or reason when it comes to dementia. The best you can do is make the right decisions for your loved ones with the information you have at the time. Mistakes will be made along the way, but these decisions are made from a foundation of love, and you can't go wrong when it comes from the heart. Learn to forgive yourself and never give up.
You are your loved one’s voice
There will come a time when your loved one will no longer be able to communicate properly or advocate for themselves. You are your loved one's voice; don't be afraid to use it.
Dementia is a family disease
Everyone in the family will be affected, and may react differently. You cannot make anyone do what they do not want to do, but you are in control of what you do. Dementia can either bring your family closer or tear you apart.
Routine is important but you need to be flexible
As their dementia progresses your loved one will enter their own, ever-changing world and you must go there with them because they cannot live in your world. It is okay to tell little white lies or "fiblets." This will save you both a lot of unnecessary pain and stress. If and when they say hurtful things, remember that, as painful as it is, it is the disease that is saying those things, not your loved one.
There is no cure, but you can help your loved one
You will need a village—family members, friends, the medical community, social workers, support groups and medications—to help you and your loved one manage symptoms such as anxiety, stress and depression. Spending quality time with your loved one is the greatest gift you can give them. They may forget your name, they may forget how you are related, but they will never forget your love. Love is not a memory, it's a feeling in the heart and soul, never to be forgotten. Love is the best medicine we have.