Early-stage Alzheimer’s disease doesn’t just affect one person- it can impact a whole family. Suddenly, family members are launched into an unfamiliar role and have to cope with their new situation. Thankfully, in the early stages, there is still time to plan for the future with loved ones. Here are some tips from Alzheimer’s Family Center’s social worker team for when you’re coping with your new role as a caregiver.
They often refer to caring for someone with dementia as “the long, sad goodbye.” The reason being is that you are slowly losing pieces of your loved one as the disease progresses. It can be a very challenging experience and one that can take a lot out of you the caregivers. Here are a few tips to help you manage your grief while saying goodbye.
Hold onto the good days and keep them with you when it gets tough
Your loved one may not be able to knit or cook like he/she used to, but that doesn’t mean you need to forget the fond memories you made together. When the going gets tough, reminiscence about the good days before the disease made its way into your lives. However, the key to this is ensuring that these good moments aren’t tricking you into thinking your loved one is all better and denying their illness.
Process losses as they happen
Example: change of functioning in the person with dementia (i.e., no longer able to drive, read books, play cards). These changes involve you as a caregiver to now having to step to support or initiate these things. But, they also show a change in your loved one’s abilities and personality.
Have conversations sooner than later
If your loved one is in the early stages of dementia, it might be a good time to make legal and financial decisions. This way your loved one can be involved, and you do not have to shoulder the burden of trying to “know” what your loved one would want. Take this time to go to an elder law attorney and go over any relevant documents regarding inheritance and estate. It will potentially ease future legal tensions.
Claim Your Grieving Process
No two people experience grief the same way; some people may need more time to grieve while others may not show any outward emotions. Know that your grief experience is your own. Don’t expect family and friends to have the same reactions as their relationship with your loved one is individual as well.
Refer to the Stages of Grief
The stages of grief can be very helpful on your caregiving journey. Dementia will gradually take away the person you loved, and you may experience different phases of grieving: denial, anger, bargaining, depression, acceptance. These stages don’t necessarily happen in the same order, and you may experience the same stages more than once.
Here are some common experiences in each stage:
Believing that the diagnosis is temporary and that your loved one will get better.
Getting frustrated at the demands of caregiving.
Being very restrictive/controlling over loved one’s diet because you believe that it will make his/her cognition better.
Withdrawing from activities
Coming to terms with the diagnosis and the fact that your life will change.
Take time for yourself throughout your caregiving journey. Keep connected with your hobbies, friends, family as best as you can. Even if you have just a moment away or to yourself, do something to keep connected with the “old you.”
Just remember, saying goodbye is never easy. The beautiful part of this goodbye, however, is that you have the opportunity day in and day out to say it in your own way and on your own terms if you allow yourself to do so.
This post was written in collaboration with Corie Enos, Social Worker at Alzheimer’s Family Center.