If you watched “Still Alice,” you will have a better idea of what a person with Alzheimer’s goes through. Especially if you have a parent with this disease, you will know how it feels like to be in their shoes.
“The poet Elizabeth Bishop once wrote: 'the Art of Losing isn't hard to master: so many things seem filled with the intent to be lost that their loss is no disaster.' I'm not a poet, I am a person living with Early Onset Alzheimer's, and as that person I find myself learning the art of losing every day. Losing my bearings, losing objects, losing sleep, but mostly losing memories...”
Alice Rowland, Still Alice
Alzheimer’s disease (AD) is an irreversible, progressive and fatal disorder of the brain. It is unpredictable in a way that some patients with this disease can be sick for a long period of up to 20 years or die within just a few years. Unfortunately, as in the case of Alice Rowland, the earlier you have AD, the faster the disease will progress. In the US, there are approximately 5.3 million Americans with Alzheimer’s and every 71 seconds, someone develops this disease with two thirds of them being women.
If you are caring for someone with AD, you, too, will need help. Just like being a parent for a newborn is a 24-hour, often tiring and draining job, caring for someone in your family with AD is very similar. More so if you have your own family, your spouse and your children, to care for. There are, though, steps you can take, so that the task will not take its toll on you both physically and mentally. You can start by understanding Alzheimer’s, what the symptoms are, and identifying what you can do for your parent with AD to make the task of caring for them more manageable.
Their Symptom: First, a person with AD will have gradual memory loss. They might place their cellphone in the fridge or step out of the house and forget how to get back. This is why a person with AD needs 24/7 help. From day to day, the disease progresses and they lose a part of themselves every single day. What they remembered yesterday, may be totally unknown to them today.
Your Need: As someone caring for a parent with AD, you too will need time for yourself and of course, for your own family. If you cannot afford to hire someone full time, get someone to help you for a few hours a day. That should cut the cost of a full time caregiver. Another option is to alternate caring for your parent with a sibling or another relative.
What you can do: To help you cope with this symptom, you can start by “AD-proofing” your home. Have signs all over your home that will “speak” to your parent with AD, such as a note beside their bed that says, “ring this bell if you need my help” or “this way to the kitchen.” You will still need to check on them frequently, but these signs will give you some extra time to prepare or to do other things. There are also therapies and medications that can help with this symptom, so bringing your parent to the doctor will not only help them, but you, as well, as the caregiver.
Their Symptom: Your loved one will be confused most of the time. There may be a point when they no longer know how to wear their shoes or their shirt. They will forget your name or even that you are their child.
Your Need: You need to be recognized for the care that you are giving and the sacrifices you are doing for your parent. This is normal and you do not need to feel ashamed that you will feel this way. Unfortunately, you will not be able to get it from your parent due to their memory loss.
What you can do: Caring for a loved one who does not remember you can be depressing. Your solace is in your family. Explain the symptoms to them and how they can help. It is hard enough for you to be feeling unrecognized. It will be harder still for you to have to answer questions from family who do not understand the disease. When possible, have another member of your family with you when you and your loved one with AD goes to the doctor, so they can get information and explanation first hand. Make sure, also, that another member of your family can get access to medical records or information record of how fast the disease is progressing, etc. for emergency cases and you cannot be around. Spend time with your family when you can and find comfort that they recognize your sacrifices and your hard work.
Their Symptom: Your parent will suffer from poor judgement, which can be dangerous for them and everyone around them. They may attempt to cook, but will no longer know how to use an oven or a stove. If this is the case, your parent is at risk of causing fire. They may also attempt to drive, but will not know how to operate the vehicle and as a result harm themselves or others.
Your Need: The poor judgement of your loved one can be detrimental to you, too. You need to feel safe when you are caring for your loved one.
What you can do: Again, you cannot do the job alone. Discuss the symptom with your family and solicit their help and support. Your safety, as much as the safety of everyone in your household is also important. The more your family understands the disease, the more they can help you. For example, make sure that everyone knows to lock the door when they leave. This reduces that chances of your parent leaving the house unassisted. All sharp objects should be kept in drawers or places far from the reach of your parent with AD. At night, when everyone is asleep, your parent might decide to get up and cook or go to the garage for some woodwork. You can consider placing a pressure alarm on the bed so that when your parent gets up, an alarm will alert you that they are leaving their bed and possibly their room. If you cannot find this type of alarm, you may also use a baby monitor. You can also give your parent the freedom to walk around the house, but make sure that you always know where they are and can be there to assist them when needed.
Finally, taking care of your with AD will allow you to express your love and affection. On the other hand, it can also be overwhelming and when it comes to the point when it is too much for you to handle, both physically and emotionally, have a plan in place for you to get more help.
There is a poem about AD that goes like this:
Don’t ask me to remember
Don’t ask me to understand
I am confused beyond your concept
I am sad, sick and lost
Just remember that I need you
That the best of me is gone
Please don’t fail to stand beside me
Love me ‘till my life is done
AD is a cruel disease, but it is a human disease and the love for your parent is what will get you through it. It is also by keeping your loved ones such as family, other relatives and friends close that you, yourself will get through caring your for parent with AD.
Marie Miguel is an avid internet researcher. She is fuelled by her determination to answer the many questions she hasn't been able to find the answer to anywhere else. When she finds these answers she likes to spread the knowledge to others seeking help. She is always looking for outlets to share her information, therefore she occasionally has her content published on different websites and blogs. Even though she doesn't run one for herself she loves contributing to others. Maria's grandmother suffered from Alzheimer's Disease.