From the moment a diagnosis of Alzheimer’s or dementia is received, lives are irrevocably changed. It may seem that nothing will be as it once was, including the future you had planned.
But it can get better with time and determination. A thought worth holding on to, especially in the beginning.
The fear and discouragement that follows this diagnosis is overwhelming for most people. Acceptance may seem impossible. It will occur but most likely not before traveling through the typical stages of grief – denial, anger, bargaining and depression. But eventually the final stage of acceptance will come.
If this disease has occurred in your family, it may help to understand that what you’re feeling now is normal. It can actually be a relief to realize you’re not alone facing this challenge.
There are several on-line resources available for you to learn more. And we hope you’ll contact us at Ingleside’s Memory Support Assisted Living if you’d like to discuss your situation and how we may be able to help. The Alzheimer’s Association is another site that offers a rich library of information.
We’re including their list here of the typical emotions experienced after receiving a dementia diagnosis. Don’t be surprised if you feel many of these, often at the same time, before finally being able to accept your new normal.
Anger: your life has changed course from what you had planned and you can’t control this disease.
Relief: you’ve noticed the changes and were concerned but at least now there is a name.
Denial: the diagnosis is almost impossible to believe and you feel overwhelmed by what may happen to your life.
Depression: you may feel sad or hopeless about the present and the future.
Resentment: you may ask yourself what you did to deserve this.
Fear: feeling fearful of the future, you don’t know what will happen to your family.
Isolation: you may feel that no one understands what you’re going through or you lose interest in maintaining relationships with others.
Sense of loss: it can be so difficult to accept these changes and you mourn what you’ve lost.
Not everyone will face all of these emotions with the same level of intensity and each of us travel at our own pace. But only by reaching acceptance are we able to begin moving forward. It’s not easy, but here are a few ways that can help.
Of your expectations and what you thought your future would be. It’s not easy to put your plans or dreams away and realize your life will no longer be what you thought. It’s human nature to think we’re in control – until we’re not. It will take time but it’s necessary to leave behind what can’t be changed. But that doesn’t mean there aren’t things you can adjust, such as your attitude and your ability to reframe the situation. Remember, go easy on yourself and take the time you need to feel sad, mourn and grieve.
The more you learn about Alzheimer’s or dementia, the better prepared you’ll be. It will actually make you feel a little empowered to know the course of the disease, what to expect and what resources may be available. The Alzheimer’s Association offers free e-learning courses and information about the different stages of the disease and tips for caregiving at each level. They also provide home safety checklists and suggestions for how to help your loved one and yourself to live as well as possible.
It’s common for both those diagnosed and providing support to feel that they’ve somehow lost their identity to the disease. One recommendation to fight this is to find ways to bring new meaning to your lives:
Connecting with others living with dementia can be a great comfort. It’s important to realize that you will need support. Taking control of what you can will restore some order in your life. Make your legal and financial decisions early on and consider reaching out to family members or friends for help.
You’ll need to be flexible knowing that continued changes are inevitable and you may have to take over responsibilities that your loved one handled. They may no longer be able to do the things they once did so you’ll need to learn new skills or ask for help.
Identify those who have offered or will help. It’s best to tell people specifically what you need, such as driving to a medical appointment or having someone to talk with. This is a progressive disease but that doesn’t mean your life can never get better. It will if you’re able to develop better coping strategies and build a strong support system you can rely on.
Many caregivers join support groups, both on-line and in person. Being able to talk openly with others who have or are experiencing similar circumstances can take away some of the isolation you may be feeling.
You may be hesitant to tell others because you fear their reaction but when you share what you and your loved one are going through it can actually help to integrate the disease into your life.
Think about what you want to say first and the best time to share the news. Consider how you think the person will react and how you will respond. And remember to go slowly. You don’t need to talk about everything at one time, especially if you see the person is having a reaction that is difficult for you.
Along the road to acceptance there are many twists and turns. But one thing that has helped others is to keep this mantra in mind – it is no one’s fault.
No one deserves to have their lives disrupted with dementia. But once you accept the diagnosis, you can begin to plan how best your family can move forward.
At Ingleside’s Memory Support Assisted Living we can help as you go through the tumultuous road to acceptance. Through education, support and assistance, we want to remind you that you are not alone.
We’re here for your loved one and your family.