If your spouse has been diagnosed with Alzheimer’s Disease, this is a very scary and overwhelming time. It is likely that you began to notice some mild cognitive impairment, such as frequent forgetfulness, and you sought out a professional opinion to get the official diagnosis. When you heard the news, your life was forever changed.
As in the stages of grief, you likely began in the denial phase, not believing this is happening to you and your loved one.
Being in shock at first is normal. You are now thrust into a caretaker role. You also are fearful about what will happen to your spouse. Both of your lives are going to be changing significantly.
Here are five tips to help you cope when your spouse is diagnosed with Alzheimer's:
- Educate Yourself
Knowing what to expect will help you prepare for the changes down the road. There is a wealth of information online that describes exactly what this disorder is and how to distinguish it from other disorders with the common dementia thread. If you haven’t already, you should learn what to expect in the early, middle and late stages. You also need a plan for how you are going to move forward with this disease impacting your life and your relationship with your spouse.
- Explore Resources Locally and Online
There are some excellent websites that offer substantial help to families dealing with Alzheimer's.
One such organization, The Alzheimer’s Foundation of America (www.ALZFDN.org) has a wealth information on assistance and support for those with this disease. Molly Fogel, a representative of the Alzheimer’s Foundation, reports that by calling their toll-free number, you will be put in touch with licensed social workers who can link you to free resources, local groups, educational workshops, and professionals whom can help you.
There is also a vibrant online community for those who may have less availability in their location.
- Get Professional Help
If you have the financial means and/or long-term care benefits to help you with caretaking, you are very lucky! But, for many of you, this may not be your circumstances. You may be surprised how much might be available to you in your local area. Check with religious organizations, social service agencies that work with the elderly, and what your medical insurance (such as Medicare) might offer.
Don’t forget about palliative care or hospice services. While hospice is for those near death, palliative care is for any point in the course of the illness. Both services help with symptom and pain relief. Many of these benefits and services are covered by insurance. You can easily get a free evaluation by your healthcare provider to determine if your loved one is eligible for these services.
Help may be in the form of your own personal individual psychotherapy. If you do not have too many emotional outlets, a therapist, especially one who specializes in neuro-cognitive disorders, could be extremely beneficial to you alone or with your family. You own therapy along with a caregiver support group could be of immense benefit.
- Don’t Feel Guilty!
There are many things you will do that you may feel guilty about. For example, meeting friends out for dinner while your spouse stays home with a paid caretaker, having to sleep in another room because your spouse keeps you up all hours of the night, taking away some of her favorite things that may cause her injury, and so on. Self-care and respite are critical. You must do things that make your life easier so that you can have the energy to stay the course. Burnout is a very real phenomenon in caregiving. If there are things you can do to prevent this then do it!
- Stay as Connected as Possible with Your Spouse
This may seem impossible, but it’s not! In her touching memoir about her mother whom was diagnosed initially with early stage Alzheimer's, author Stephanie Levenston reflects on how both she and other family stayed emotionally connected throughout their loved one’s illness.
In her book, Joining Joanie: Staying Connected to Your Loved One Through Dementia and Beyond, she discusses how crucial the self-care piece is to have the desire to connect in the first place.
Levenston also recommends, “using other means for communication and paying close attention to nonverbal communication.” For example, when your loved one is struggling with verbal communication, she suggests “looking at facial expressions, body language, gestures, the tone of voice, and using any other contextual cues available to help you pull together the message they are trying to convey so that you can make a connection.” She also encourages ongoing physical touch and affection as this too can facilitate emotional connection.
There are currently around 5.5 million Americans living with Alzheimer’s. You are not alone and many other spouses and families share your struggle. Don’t hesitate to seek out and accept assistance and support that is offered. You must lean on those who are in your life already. You also need to embrace available resources and make new connections with those who can support your journey.
Alzheimers Foundation of America www.alzfdn.org
Alzheimer's Association www.alz.org
Purchase from Amazon: Joining Joanie: Staying Connected to Your Loved One Through Dementia and Beyond by Stephanie Banks Levenston or The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by Nancy Mace and Peter Rabins