Nataly Rubinstein, M.S.W., L.C.S.W., C-A.S.W.C.M.

Nataly Rubinstein L.C.S.W.

Life Interrupted

When Someone You Love Is Diagnosed With Alzheimer's

Should you be the primary caregiver for your loved one with Alzheimer's?

Posted Dec 07, 2011

Hopefully by now some of your tears have dried and you've done some research. You've read that AD is an irreversible progressive brain disorder and there is no cure. It doesn't help to hear that you will now be joining the ranks of the over 11 million dementia caregivers. Your life is now interrupted. 

Before you rally or jump right in and become a caregiver, there are things that you will need to know and should consider-and then reconsider. 

Know that your identity and routine will abruptly change. 

It's natural to have conflicted feelings about becoming a caregiver. You have read so many accounts from well-meaning caregivers and may have experienced caring for someone close to you in the past.

Before you sign on to becoming a caregiver, you need to know that it will affect every aspect of your life: socialization, intimacy, roles, relationships, jobs, sleep, finances, and mental and physical health. There will be periods of time that you will be burning the candle at both ends. Keep in mind that prolonged stress has negative consequences.

Now imagine the above was a job description. Honestly, would you apply for it?

Stop-wait-there is no rush. Many jump into caregiving as a knee-jerk reaction or a call to arms. It happens with a phone call or maybe a visit to the doctor. Your parent has been diagnosed with a form of dementia such as Alzheimer's. A diagnosis will change their life and yours too. Just hearing the word "Alzheimer's" can cause an extreme emotional panic and an "Oh, my God, what am I going to do?" feeling.

Not everyone is equipped to be a caregiver, and they later find themselves in a severe depression, jobless, isolated, and in financial straits. It doesn't have to be like this. With a little understanding of the disorder and proper planning, your caregiving job can be made easier. For starters, you need to know that caregiving is a choice. Before you jump in and choose to become a caregiver-and yes, you do have a choice-there are several things that you need to consider, and it all starts with you.

Know Thy Self

Before you sign up to be the caregiver, think long and hard about yourself, your current situation, and the person you will be caring for. Do you have the time and energy to add an additional responsibility to your plate? Whether you have a family of your own or are single, realize that caring for a person with dementia will change all aspects of your life. Will your job allow time off so you can take your loved one to doctors' appointments or perform last minute fill-ins for an aide who doesn't show up? How are your current relationships with friends, family, and siblings? Do you have the temperament or time to care for another person?

 Whom Will You Be Caring For?

No matter whom you are going to be caring for-whether it's your spouse, partner, sibling, other family member, friend, or neighbor-you will need to ask yourself, How is my current and past relationship with this person? Everyone plays a role in their family, and suddenly reversing or switching roles may be difficult if not impossible. As a child, suddenly being thrown into the role of parenting a parent is something that nobody is prepared to do. As a spouse, taking over and controlling your "partner's domain" is going to feel unnatural and confusing.

Why Are You Choosing to Be a Caregiver?

Be honest with yourself. Are you choosing this out of love or because you feel a sense of obligation? Is it because you live closer to the person than other family members, or do you have a better relationship with the person you are going to care for? Are you getting back at the person for past mistreatment or trying to fulfill a dream of the perfect relationship? Some people use their caregiver position for financial gain, while some may see it as an opportunity to escape from their current adult responsibilities and have an excuse to withdraw from living their own life.

 What Are You Dealing With?

Has the person you will now be caring for had a proper diagnosis? As the caregiver, you will need not only to understand this disease but to continually seek out additional resources such as support groups, educational programs, community resources, and respite services. To be a successful caregiver, you will need to know the type and stage of dementia the person has now and to be prepared for what will happen in the future as the disorder progresses.

 When Will You Need to Provide Care?

Care will vary depending on the individual, their circumstances, and their diagnosis.

In the early stage of dementia, the care needed is usually easy to give. A kind word, a simple suggestion, a phone call, or a visit is all that both of you may now need. Over time, as this disorder progresses, you will need to provide more intensive care-from supervision to actual hands-on care.

 Where Will You Provide Care?

Will you relocate yourself into their home or will you be bringing them to live with you or closer to you? Can your current home accommodate them or can you add on?  If you live in another city or out of state, consider hiring a geriatric care manager to help you make a good decision as to what resources will be needed that will allow the person to remain where they are for now or to recommend a facility that will be appropriate and will provide for better care.

 How Will You Make This Work?

I wish that there was one simple answer, but there isn't. There is no "one size fits all" when it comes to caregiving. What works for one person may not work for you. You are unique, your situation and relationship are unique, and the person you are caring for is unique. Over time, as a caregiver, you too will change, and your life and needs as well as the person you are caring for will change. You will need to keep an open mind and be patient.

Being a caregiver is not for everyone. If you feel anger or animosity, despite your good intentions, you might not be the best person for this job. Be honest about how you feel about the person, and know why you choose to care for them. In the long run, you may need to do what is best for you and for them.

In my next post, I will address the reality that despite people's best intentions, not everyone is cut out to be a caregiver for a person who has dementia.

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