When I found out my mom had vascular dementia/Alzheimer’s disease (UPDATE, she has frontotemporal dementia, but the same rules apply here), I immediately felt incredibly, outrageously overwhelmed. Super. Dementia. Alzheimer’s disease. Now what?
After visiting a lovely place called DENIAL, my good friend David suggested I come up with a “TO DO” list. This was actually one of the best tips I ever got because there’s a lot that has to be done as the disease progresses. Over the course of this blog, I hope to add more “TO DOs” from other young adult caregivers………………. The goal — to help you take care of business and hopefully avoid some stress along the way.
Here are my thoughts (more to come):
- Walk, run, drive, bike to your local Alzheimer’s Association chapter and talk to someone. These people can help guide you along the way, give you names of doctors, nursing facilities, day care programs, home care services, etc.
- Talk to an elder care lawyer or a pal who just graduated from law school about the legal stuff like health care proxies, power of attorney, trusts, etc. There may come a point when you’re going to have to talk to your mother or father’s doctor or make decisions on their behalf — without the right paperwork, your hands may be tied.
- Find a therapist. You have your family and friends, yes. But this is a long journey and it really helps to talk to someone who is not part of your inner circle.
- Get organized. Make lists. Find out where your parent banks, where they shop, who their friends are, what medications they’re on…….. you’re going to want to start getting things in order because eventually, your parent won’t remember those little details, like where that one credit card is or what pills they’re taking.
- Medicare. If you’re parent is on Medicare, have them call up and authorize you to speak on their behalf. This is huge because you will likely have to call them to discuss billing issues, etc, and Medicare will NOT talk to you unless your name appears on their screen as an authorized speaker.
- Join a support group. You may feel terribly alone at times. A support group is a great way to meet other individuals who are also going through this ordeal, and you may get incredibly helpful information about coping, lawyers, dealing with family/friends, etc.
- Circle the wagons. In my opinion, dementia is a disease that affects the entire community. That means, the community should play a supportive role. In my case, that meant going to my mom’s church and getting the support of the priest and other “high-rollers” at the church. This disease is also a family disease…. try to get family members involved if you can — you will need the support.
- If the wagon is broken, keep going. Sometimes, family can’t or won’t help. Try not to let this bother you, it’s really not worth it. Just know that by choosing to wash their hands of this disease, they are no longer part of your equation when it comes to decision-making. If you’re doing the heavy-lifting, you do not need their OK for the choices you have to make on your parent’s behalf.
- Behaviors. If you’re dealing with a parent with behaviors, contact Banner Alzheimer’s Institute in Phoenix, AZ and/or the Association for Frontotemporal Degeneration.
- Count to 10. It’s easy to get angry. Thing is, you may actually need the person who is pissing you off. Stay calm if you’re dealing with someone who can actually make your situation better in the long run. You know, flies, honey……… you get the picture.
- Walk in their shoes. I know it sounds counterintuitive, however, I’ve found that when I enter my mom’s world and speak her language, I get better results. Also, because my mother can’t really communicate, speaking her language helps calm her down………… imagine the comfort you feel when someone FINALLY gets you. You can’t change your parent, so (as long as it’s safe) follow along.