You’ve just heard the diagnosis. Now what? Expert Caregiver Carol Bradley Bursack explains what you need to know and do immediately after diagnosis.
You first suspected something was wrong when your mother took too long to run some errands. You thought she just wanted some time to herself, but she was gone more than an hour longer than planned, and when she did return, she snapped at you for asking if everything went okay. Something seems different about her, but you shove the thought away. Then your dad takes you aside and tells you he’s worried. Your mom left the water running in the sink the other day and just walked away. When he commented on it and turned it off, she yelled at him. She said she had to leave it running so it wouldn’t freeze. It was 80 degrees outside.
You and your dad know she needs to be examined by a doctor. It takes some persuasion to get her to go, and during her appointment, she denies having the problems you have described. Finally, she breaks down and admits she is afraid - the truth is too blatant to ignore. She goes through tests and is diagnosed with Alzheimer’s disease.
What do you do now?
- Take time to accept the truth of the diagnosis.
Sure, we can hear it; we can see it. But most of us will live in denial for as long as we can. It’s human nature to not want to accept the unacceptable. It takes time to absorb the truth. When my dad went into brain surgery to correct a problem from a WWII head injury, we were very confident. It was a surgery that is nearly always successful. But, because of scar tissue or for some other reason, the surgery was a disaster. He went into surgery one man and came out another - a very damaged, demented man. With Alzheimer’s disease, the process is generally more gradual, but you will still see some shocking changes occur, seemingly overnight. Each case is different. There will be plateaus, but, after you adjust to those, you will see more changes and have more adjusting to do. Time is necessary to make each adjustment. You will need to digest each truth. Time to seek the help you need to get through the ordeal.
- Seek all the information you can find.
Go to the Alzheimer’s Foundation of America site at www.alzfdn.org. Along with links to many organizations, they offer help by phone. AFA’s toll-free hotline, 1-866-232-8484, provides information, counseling by licensed social workers and referrals to community resources across the nation.
Go to the Alzheimer’s Association. They have chapters all over the country. Look in your phone book, or go to alz.org to find the chapter nearest you. While you are on the computer, follow the links. See what can help you now, and what you can look into as issues develop. Make a list for future reference. You can’t do everything today - you are still absorbing the shock.
Make the recommended call to your local agency (they have a “finder” to help you). Their national toll-free number for help day or night is 1- 800-272-3900. The agency’s site will help you learn how to prepare for doctor visits and be a true partner with your doctor for the best possible treatment.
Look to these organizations and others for caregiving support. Caregiving can affect the health of the caregiver tremendously. Depression and other mental health issues, sleep loss, skipped physicals and auto-immune disease are just a few of the consequences of caregiver neglect. While researching for Alzheimer’s care options, also watch for caregiver health tips. Both of the above sites offer extensive support. Use it.
Respite care for the caregiver figures heavily into this. You need to check with your local Alzheimer’s chapters and Social Service agencies for suggestions about local relief for caregivers. You will need it and your mom would want you to have it - no matter what she says in her demented times.
- Find out about all of the treatment options available.
First and foremost, establish a strong bond with the physician(s) caring for your mom. Communication is vital. A person with Alzheimer’s disease is not going to be able to accurately tell the physician what is happening to them. This is where the caregiver must be proactive. Let the physician(s) know that you want to partner with them in your mom’s care.
- Ask about available medications.
Some drugs focus on slowing the progression of the disease.
One class prevents the breakdown of acetylcholine which is a chemical messenger in the brain that is important to memory and thinking. The other class appears to work by regulating the activity of glutamate, one of the brain’s specialized messenger chemicals involved in information processing, storage and retrieval. Glutamate plays an essential role in learning and memory. These drugs help some people more than others, which is why it is essential to keep an open dialog with the physician.
Other medications help manage the agitation that is a difficult part of Alzheimer’s. For agitation, there are two approaches - non-drug and prescription medications.
Prescription drugs that help agitation include antidepressants for mood and irritability, anxiolytics for anxiety, restlessness, verbally disruptive behavior and resistance and antipsychotic medications for hallucinations, delusions, aggression, hostility and uncooperativeness. Learn about them so you can ask the right questions.
Be sure to let the physician know if you are interested in clinical trials that come up. The internet, too, is a great source for tracking clinical trials. Researching them can be empowering. The need we have to do something is strong. Being proactive helps satisfy that need, and salves the nagging feeling of helplessness that plagues all of us as we trudge this long road.
- Educate yourself about non-drug interventions which include identifying the behavior and understanding its cause and then adapting the caregiving environment to change the situation.
An unfamiliar environment can lead to agitation in many Alzheimer’s patients. This leads to many hard choices when families have to decide how to handle holidays and other occasions. How do you include the Alzheimer’s patient without adding to his or her agitation? Each person is different and each occasion is different. Talk with doctors and social workers - the network you will establish - when you are in a quandary (which will be quite often). Support helps. Listen to other caregivers and ask how they handle Christmas celebrations or a grandchild’s graduation. Learn about message boards for reminders. Learn about stress reduction for your parents and yourself. Use the list of resources you are making now. Refer to it often and dig deeper into the Web sites and literature as you absorb the diagnosis. Other caregivers will be some of your best resources.
- Make a long-term plan of action for treatment and care.
If your parents haven’t already done the legal and health care planning which we all should do, such as having a Will, a Durable Power of Attorney and one for health care drawn up, be sure to get this handled as soon as possible. This is vital, since your mom is already starting to lose the ability to make decisions for herself. While you are on the subject, make sure your dad has done this, as well.
If your mom and dad can handle it, take them with you as you look at facilities. It is likely your mom will eventually need to go to one. Look for one with a memory unit, specifically designed for dementia patients. Memory units are becoming very common in good nursing facilities.
In-home help should be looked at, for the short-term. Your dad can’t be awake 24-hours-a-day. Your mom is already showing signs of wandering. For your mom’s safety, the time will soon come, if your mom remains at home, where you will need to hire someone to come in to help. For all types of care, ask for references and check them.
- As the truth settles in, you will want to bring others on board.
As the truth of the diagnosis settles in, you all need to talk - your mom, your dad, siblings - everyone in the family. You will all be affected. Your parents may want to keep it a secret - to not “worry” others. That is unfair, even though they don’t mean it to be. Your siblings need time to adjust and time to mend fences or help out or whatever it is that your family health requires. Close friends will want to help and have a right to be offered the chance. No one can fix this, but the love and help of good friends can make a huge difference to your parents and to you.
- Remember that the whole family is going through grief and loss.
The grief begins when you hear the dreaded diagnosis. It will never truly end. Your relationship with you mom, your dad - even your spouse and kids - will change during this time. Treat yourself and your family as grieving people throughout the whole process. Because you are. Grief doesn’t start at death. It begins with loss. And Alzheimer’s disease thrusts upon a family one of the biggest losses in human experience.
Be sure to explain to children and teenagers that Grandma loves them just as much as she always did, and that her new behavior is beyond her control. Her body has betrayed her. Help them keep their good memories alive throughout this period, so that they don’t only have memories of a demented grandma. And tell them how much their visits still mean to her, even if she can’t show it, or gets to a stage where she doesn’t seem to recognize them.
This is hard work, when you are struggling yourself and barely holding it together. But, when your mom is gone, all that is left is the memories. You don’t want her whole life wiped out because no one can remember who she was before the months or years of dementia took over.
Look at photographs of happy times with Grandma. Put some out where the kids can see them. Talk about shared holidays. And when Grandma is short with them, remind them, when you are alone, that she would not act this way if she could control it, and nothing has changed in her love for them. This can be a terrifying time for kids. They see a beloved grandparent change before their eyes. The helplessness you feel is multiplied for them, by a lack of world experience.
- Respect is vital.
Respecting your mom is vital; respecting yourself is vital. And there will be times that it will seem impossible to do both. That is why you need outside help. Alzheimer’s disease claims as its victims, the whole family. Look to your spiritual community for help. Look to Alzheimer’s organizations for help. Look to support groups for help. Those who have been through it understand, and their strength will be there for you to draw on as you travel this journey with your mom.
- After the diagnosis, life goes on. But life will be very different.
You’ll need help navigating the long road ahead. Reach out. There are loving, experienced people who want to help. Let them. Organizations are continually updating information. Feed your hunger to learn more by checking the Alzheimer’s sites often. Read the information and the blogs on ouralzheimers.com. You’ll be drawing strength from veterans.
This experience with your mother is part of your life journey. It will change you forever. One day you will be able to give back to others who are struggling with the devastation of Alzheimer’s disease. You will become part of the solution.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.