My friend’s mom has Alzheimers. She was asked by a reporter to give tips for others and this was her story. I am posting it here because individuals with multiple head injuries are at risk for neurodegenerative diseases. Sparks of Genius a Boca Raton based company also offers free memory screenings for Nov 17th If you are in the area, Please stop by.
This is her Alzhiemer Survival Story
If your best friend came to you and told you that his/her mother had just
been diagnosed with Alzheimer’s, what would you tell them are the top three
things they should do?
My mother has Alzheimer’s. She lives in an assisted living facility about 15 minutes from my home. I am a licensed clinical social worker who works in geriatrics. Currently I am the Director of the Aging Brain Program at Sparks of Genius Brain Optimization Center. (www.sparksofgenius.com). Here are the three things I would tell my friend:
Alzheimer’s is a progressive degenerative disease. That means it’s going to get worse and you need to prepare for it. There’s a lot that needs to be done. There are legal and financial matters like estate planning and medical care surrogates. If there are multiple children, who will take care of what? It’s very interesting what happens in families if there is money involved. Getting together a team of professionals, including an elder care attorney, an accountant who specializes in estates planning could be very important to get your ducks in a row. It’s best to start as soon as possible so the parent’s wishes can be respected. Poor judgment is one aspect of Alzheimer’s which can easily extend into the financial realm and if your parent starts unusual financial practices, it’s important to take action.
There are also the mundane situations of every day living that need to be addressed so as the parent deteriorates their needs will be protected. Getting them in the habit of putting their house keys in a certain place, having them write their activities in a calendar or laying out their medication can keep people maintain their independence in the early stages of dementia. Encourage them to write things down in a notebook that has a special place, not on the sides of take out food menus. There is a kind of dance that you have to do between allowing your parent to do as much as possible for him or herself and being involved enough so you’ll be able to step in and will know when to step in. For example, monitor the refrigerator. Are there nutritious foods in there or is it a science project. Is Mom forgetting her medication or taking it twice. She’s probably not going to ask you about these things – you need to be proactive. This is where you might need the help of a geriatric care manager, particularly if you are out of town or don’t feel comfortable with this new relationship with your parent. Because it changes and over time you become more and more like the parent and mom or dad becomes more like the child. Now when I offer my mother a hard candy, she gives me the wrapper. I guess it’s my roi for massaging her arms with junket rennet custard.
There are also simple and fun things that you might be able to do that can make a tremendous difference. Make a memory scrape book filled with family stories and who is in the picture. Do it while your parent can still remember them. Later on this can help orient them when their memory has faded.
- Remember to take care of yourself and get help when you need it. Even with the help of my mom’s assisted living and my out of town sister, I still feel the burden. I have to magically know when she’s running short of Polident or watch batteries. I go to medical appointments. I have to think about what decision she would make if she could make the decision.
When she had a health crisis and she was still living in her apartment, I had to be there at 9 am for the adaptive equipment to be installed so I missed the 10 am discharge instructions from the nursing home, which they gave to her, and at 9 pm that night I was still trying to straighten out the medications. Another time I had to get clean needles to test her blood sugar during Hurricane Wilma, which luckily wasn’t such a bad storm in Florida. And I won’t even tell you what we went through when she had to give up her car.
Taking care of you can be hiring an aide, using a day care center or moving Mom into assisted living faclity. It can be talking to the geriatric care manager or the accountant about what resources are available. Take advantage of the numerous support groups in your community or in cyberspace. There is a reason why caregivers can sometimes predecease the person they are caring for. Take care of yourself.
Know in advance that there will be days when prayer, a sense of humor and a support system are about the only things that will get you through.
Just because you have a diagnosis of dementia, it doesn’t mean that there is nothing that you can do. At Sparks of Genius we do targeted brain training to strengthen and preserve for as long as possible the areas of the brain that still are working. Even when there is dementia the brain can create new neural pathways. There are medications that can slow down the progression of symptoms. Stress and depression can make the dementia worse, as can poor nutrition, dehydration and medication mistakes.
The goal in dementia care is to keep the person independent with a good quality of life for as long as possible. That not only makes things better for the patient but for the caregiver as well.
You didn’t ask me for a fourth thing, but here it is anyway. There are some gifts that come with dementia. I can see how much my mother loves me, now that her defenses are disabled. She always smiles when I come. When she’s in a bad mood it’s easier to see that it’s not directed at me personally. She sometimes thanks me when I do something for her. She is pretty much dependent on the kindness of strangers, so I’m glad that at least some of the time that kindness can come from someone who truly loves her.