While I don’t think that there is any way to prepare yourself for dealing with Alzheimer’s Disease on a daily basis, I do think there are ways to get ahead of the game…even if just a little. Alzheimer’s is the only disease that you can’t prevent, you can’t slow down, and you cannot cure.
It’s not simply forgetting where you left your keys or forgetting a lunch date with an old friend. The process is slow and sometimes hard to decipher. As a caregiver, things like anger and guilt will be your silent partners. Confusion and sadness will be your constant companions, but grieving too soon will only hurt both you and your loved one.
As our parents get older, we start noticing the changes and we think, “what should we do?” The worst thing you can do is nothing at all. Although there is never an easy time to have this conversation you should have it as soon as you start noticing the signs of Alzheimer’s.
10 Signs of Alzheimer’s and Dementia
- Forgetting things like planned events; like a lunch date with friends or a doctor's appointment.
- Having trouble following directions; like a recipe or balancing a checkbook.
- Difficulty completing tasks; like turning on the microwave or maybe operating the remote control.
- Forgetting the time or date or even the seasons.
- Problems with finding the right words in a conversation.
- Losing things; misplacing a necklace or a hairbrush etc.
- Bad judgment; this can mean sending large amounts of money to charities or maybe not bathing often enough.
- Withdrawing from things they used to love to do; maybe they don't remember how to work the sewing machine or how to knit. They may not want to be around other people anymore.
- Mood swings; they may get emotional as they start to realize that they are having problems. They may become irritable when there are changes in their routines.
- Trouble understanding visual images or spatial relationships; some have a hard time seeing, judging distances and determining colors. This can be a hazard especially when it comes to driving.
There are so many things you will need to know, things you will have to do, so any information you can gain now will be a huge help to both of you later. Find books like The 36-Hour Day, websites like SeniorAdvice.com and The Diary of an Alzheimer’s Caregiver, and support groups like the Alzheimer’s Association. First and foremost, this isn’t something that can be taken care of after one conversation. It will be an ongoing conversation for awhile, but just like with most things getting started is the hardest part.
You need to know:
- What kind of plans your parents or loved ones may have already made.
- Do they have a plan in place for these changes and if so what is it?
- Have they decided who will be their care manager?
- Do they have a living will?
- Did they purchase long-term care insurance?
- What decisions have they made in regard to their care when they can no longer do it themselves.
If your loved one hasn’t made a plan then you need to come up with one together:
- Who will be their primary caregiver?
- Will it be a family member or a professional?
- Will they live with you or go into an assisted living facility or a place specializing in memory care?
So many questions and so very little time. While the disease may last for years their mental capacity and ability to make important decisions won’t. You don’t want to live in denial if the facts are right there in front of you.
Most caregivers only become caregivers after some emergency has forced them to take over. It is usually very sudden with no time to prepare. This is hard not only for the caregiver but also the patient. With proper planning, you can transition yourself into taking over with minimal disruptions. I wasted a lot of time confused and grieving for all of the things we hadn’t even lost yet instead of enjoying each day for the gift that it was. Your loved one is still here and it’s very important to include them on any decisions while it’s still possible.
When you’re entering this phase it can seem so isolating but please remember that you are not alone and a great plan will save your sanity later. Along with a plan you will need a strong support system to be successful. You cannot do it alone. It takes a village.
Two-Thirds of All Caregivers are Female
As our parents age, we know that as women we are most likely going to be responsible for their care. It will affect your mental & physical health like nothing you’ve ever known before, but remember that self-care is just as important as patient care. Coming out the other side of caregiving whole and healthy is the goal.
Alzheimer’s is an absolute death sentence. It’s a difficult disease to live with as both the patient and the caregiver. The totality of it can be exhausting and Alzheimer’s will last for years. You are preparing for a marathon not a sprint and just like running you need to know where you’re going. Research! Research! Research!
Protecting Your Loved Ones is the Job
Don’t wait until your loved one has wandered away or gotten lost. Until they forget to take important medication and end up hospitalized. Until they have given all of their money away to a fake charity. All of these situations can be avoided with some proper planning. Keeping them safe, secure and happy is our job. Getting the information you need as soon as possible is a huge step in getting prepared.
Alzheimer’s doesn’t just affect the person who has been diagnosed with it. It affects the whole family, and responsibility should be shared within the whole family. Create a Facebook group to get news out to multiple members quickly, play to each other’s strengths, and remember to enjoy every day that you have with your loved one. Make new memories, share old memories, and don’t forget to live your own life.