You’ve lost your phone……AGAIN! You shout to your husband, “Have you seen my phone? I swear this is the third time this week I’ve lost it. I think I must have Alzheimer’s.” Thankfully, you find it (it was in your purse!). All is well!
Until my life was touched by families that are dealing with dementia a statement like this never even phased me. NOW? It makes a difference.
Stay with me folks for just a few statistics. Today over 5 Million Americans are living with dementia, and in 2050, it could be as many as 16 Million. In 2012, 15.4 Million family and friends provided over 17 Billion hours of unpaid care to those with Alzheimer’s and other dementia – care valued at more than $216 Billion.
Recently I was at a meeting and met a young woman who was more than a statistic. She was dealing with the heartbreak of how Alzheimer’s disease was effecting her own family. Her Father had Alzheimer’s disease and her Mom had been caring for him for a few years. Recently his symptoms and behaviors had gotten more complex. Mom was no longer able to leave him home alone, he had also become more aggressive. Mom was caring for him primarily alone and had little support. They both had become more and more housebound because of his illness and now HER health had also started to suffer. Friends had been much less available of late and church family had also not stepped up.
This daughter was visibly distraught. “I don’t know what we are going to do. I am so worried about my Mom. I help as much as I can but Dad is becoming more and more difficult. We think it’s Alzheimer’s, at least that’s what we were told but we’re not completely sure. Do you have any advice? We really need some help.” I could hear the frustration, and fear in her voice and my heart went out to her and her family.
Unfortunately this scenario is all too common. Families are often reticent to share their situation with others either because of embarrassment or not wanting to burden anyone. This is a mistake. Dementia is something that needs to be diagnosed and treated early. So what is a family to do?
Here we are at a crossroads where we once again have to “Read the Signs”. There are some Proactive Steps that you can take:
SEEK PROFESSIONAL MEDICAL HELP – There needs to be a proper diagnosis from a medical professional (preferable someone who deals in dementia care). First see your family Doctor for a complete physical and rule out any other possible causes for confusion. Next seek out a Neurologist (you can ask your primary Doctor for a referral)– this person will be up to date on research, medical therapies and other things you can do to assist your family member. You want to make sure that you know exactly what you are dealing with. There are many different types of dementia and you want to have the appropriate diagnosis and treatment.
*At the Neurologist visit bring a complete medical history regarding your family member including medications they are taking. If possible compile a diary of your family member’s behaviors (eating habits, waking and sleep habits, times of day when they seem to be more active or agitated, possible triggers to specific behaviors). All of these things will help your Doctor get a more precise picture of what you are dealing with. Most important- be honest and forthcoming with what is happening – this is not the time to keep things under wraps.
FIND SUPPORT – Caring for a loved one with dementia is emotionally and physically draining. No one can do this alone – and a primary care giver will need support. Have a family meeting. Be open and honest about the need to share responsibilities, the need for caregiver respite and the possible need for financial assistance. Don’t be afraid to ask for help from family and/or friends. Contact and attend a local support group. Sometimes just talking with someone who has experienced these same things can be a comfort and an inspiration. You can find a local support group in your area by contacting the Alzheimer’s Association at www.alz.org.
PAPERWORK –Many families wait much too late to get their legal house in order. Don’t let that be you. If you or your family member are in the early stages of dementia you will want to make sure that the proper legal forms are in order to assist in executing your wishes. Here are the documents you will need to have:
a. Living Will
b. Healthcare Power of Attorney
c. Financial Power of Attorney
d. Last Will and Testament
e. DNR ( do not resuscitate document if desired)
To find out more about legal documentation go to:
HOMEWORK and RESEARCH– We don’t know what the future holds- but Alzheimer’s disease is a progressive disease and you will need to have plans in place for potential care. We all would love to stay home of course but we do need to consider that we may need in home care or possibly a care community. Alzheimer’s disease effects not only memory but also functionality of the body. We need to be prepared. Knowledge is power. Knowing what type of care is available, the costs, and possible assistance that could be available to you can be life changing. Do not wait until the need is at critical mass. NOTE* -Medicare does NOT pay for long term care for patients with dementia.
Nothing can prepare us for dealing with dementia or having a family member who is facing these challenges. What we CAN do is be proactive. Taking an active role in the decision making can help us deal with the fear and frustration that we will face. Asking for help is a sign of strength. “Reading the Signs” can be the a first right step.
Best to you,
P.S. As always I welcome your comments and stories as we help each other.