As CEO of Home Helpers® Home Care, it’s my privilege to work with the best and most dedicated group of home care professionals in the industry. This extends to both our staff at the National Support Center as well as the owners who operate offices that serve more than 1,000 communities across the United States.
Like many of our owners, Beth Dow got into the home care business because of a personal experience and a desire to help others. Beth started her Home Helpers office in 2006 because she experienced the toll Caregiving can have on families. During this journey, Beth learned more and more about how Alzheimer’s and other forms of dementia can be particularly cruel in their impact. She has graciously offered to share this excerpt from her book, My Loved One Has Dementia! Now What? It’s available on Amazon.
Here is an excerpt from Beth’s book on what to do first when Alzheimer’s strikes your family:
First Steps
No matter where you are on this journey of learning how to live while caring for someone with dementia, I want you to stop right now. Take a deep breath and make sure that you follow these next 8 steps. It is never too late nor too early to take them. The earlier the better, so don’t put them off. These are the most important next steps you can take.
First, if you are the primary Caregiver, you need to pull up every bit of courage and patience you can gather. Tell yourself YOU CAN DO THIS! You may have doubts. You may not know how. I’m telling you if you are realistic about your abilities, and more importantly, your limitations, you will survive this journey. It will be a journey of rewards, laughs, personal growth, and yes, sadness, but you can do this! Go ahead, say it out loud. “I can do this!” When you doubt it, feel overwhelmed, or feel like you can’t do this another day, yell it at your loudest.
If you are not the primary Caregiver, I need you to understand this: The primary Caregiver cannot do this on their own. No matter what they say. They will need help. Do not require more of them than you are willing to do yourself. While your help is needed in caring for the one with dementia, your first job is to care for the primary Caregiver . . . Are they getting the sleep, medical attention, personal interaction, and support they need? Don’t ever forget that all too often the primary Caregiver dies before the person they are caring for—like my granddaddy, they just plain wear themselves out.
Second, learn everything you can about the diagnosis of your loved one. Every member of the family, extended family and even close friends who will play a significant role in the Caregiver’s and/or loved one’s life should do the same. Read, Google and go to workshops.
Third, call a mandatory family conference. This can be in person, by phone, or on FaceTime. It can be blood family and friends that are like family. The purpose of the meeting is to get everyone on the same page. Everyone needs to understand that you need their help. This is not a time for excuses about why someone cannot help. It is not the time for all the decisions about the future to be made. This is a time for, as Joe Friday would say, “Just the facts.” Here’s a quick outline to follow for this meeting:
- Begin by explaining the dementia diagnosis.
- Be firm on the point that you cannot do this alone. To survive you will need help.
- This conversation will call for brutal honesty on your part.
- Know that finances are often the most difficult subject
As to that last point, good or bad, you must be honest here. I cannot tell you how many conversations I have been a part of where the adult children thought that their parents were financially sound, only to find that their parents’ home had two mortgages and there weren’t any savings. Caring for someone with dementia is not cheap . . . strong family friends or clergy can help lead this conversation. Geriatric care managers can also help. You can contact your local Area Agency on Aging or the Alzheimer’s Association for help in your area.
Fourth, run – do not walk – to your nearest elder law attorney, financial advisor, banker, and/or veterans’ care specialist. You need to know what financial resources are available to help with care. What name changes on property, bonds, etc., need to happen. Make sure all the legal paperwork, wills, trusts, and power of attorney papers are in order. If your loved one is a veteran or the spouse of a veteran, you need to know what assistance is available to help them. All too often, this step is put on the back burner. Many times, when you put something on the back burner, you forget about it. Do not delay this step.
Fifth, commit to not doing this alone. I hear folks say, “I’ll do this as long as I can.” That’s like saying, “I’m going to start cutting my arm, and when there isn’t any more to cut, I’ll ask someone else to take the knife.” By then you have cut your arm off or at the very least done irreversible damage. If you do not remember anything else, remember this: caring for someone does not mean that you provide 100 percent of the care. The best care you can give your loved one may not be the care you provide.
Sixth, do not isolate. When you begin to care for someone, you may tend to stay home more. You are exhausted. It may be difficult to get your loved one out of the house by yourself. So, you stay home. Isolation is one of the most damaging effects caregiving has on the Caregiver. It is self-sustaining, not selfish, to go to church, go out with friends, and find a support group. There are even support groups on Facebook. Find a group of people that you can help support and who can help support you.
Seventh, consider that your loved one may not be the only one that needs to be medicated. I may have just stepped on some toes there. Caregiving is stressful. One doctor said that 97 percent of all illnesses can be traced back to stress. You must survive this, for yourself and for your loved one. Go to your doctor. Get a checkup. Consider something to help you with anxiety, stress, and depression. If you needed insulin for your body to perform at its best, you would take it. So, why wouldn’t you get help for the chemicals in your brain that are going haywire from the stress and exhaustion you are experiencing? Medication is not a sign of weakness. It is a show of strength that you are committed to getting through this. That you plan on being the best you can be for you and your loved one.
Last, but not least: laugh, dance, and sing! It has been proven all three of these improve your mood and help the chemicals in your brain maintain balance. Caregiving is hard, but at times you can find laughter. Journaling may help. When you go back and read over the events of days past, you may find humor where you had missed it before. When there is no laughter, there is always song. Watch funny movies, sing in the shower, dance in the kitchen. Find a reason to smile.