I sensed changes in his personality. I began to notice several troubling changes. He became dependent and seemed to need to know that I was around. This was something totally alien to me. Negativity was creeping in where it had never been before. The little things were slowly becoming bigger issues. My once confident husband was losing his self-confidence. He began to second-guess himself.
Our children were very aware of the problem from speaking with him every weekend and when they visited. The same story would be repeated over and over again. The same question asked over and over again. This was creating a great deal anxiety for me. I was working and trying to balance the situation at home. It became increasingly difficult. I really needed answers.
It was “early onset Alzheimer’s” (now often referred to as “younger onset Alzheimer’s). On most days, I understand and accept the diagnosis. Some days, however, I wonder if there’s been a mistake. For a brief, shining moment our world seems normal. Then in the blink of an eye, we’re back in the reality of the situation.
But while Alzheimer’s complicates our lives, it doesn’t end them. We try to live more in the present and to educate ourselves as much as possible about the disease. Knowledge helps us cope. We attend a support group for people with early-stage Alzheimer’s and their care partners, and we volunteer for the Alzheimer’s Association whenever possible. They give so much to so many that we like to give back whenever we are able.
[excerpts taken from “Val’s Story,” Alz.org/Blog, June 1, 2012]
Nowadays, families have moved so far apart that often times the only “face-to-face” time we have is over the holidays. We make a quick trip home for Thanksgiving, and a bit longer over Christmas. This is often when it becomes evident that Mom or Dad (sometimes both) are really struggling to make it on their own. Or, you realize that it won’t be long until you are at that point.
In the early stages of Alzheimer’s, a person may still function independently. He or she may still drive, work and be part of social activities. A person in the early stages may experience mild changes in their ability to think and learn. But to others, the person may not appear to have dementia at all. The early stages of Alzheimer’s can last for years.
Constant repetition of the same story or conversation piece, wild mood swings and increased irritability, even blurred vision or balance issues can be signs of dementia or Alzheimer’s disease. Many families delay confronting the issue until it’s too late, e.g., there is a car accident or some other strange occurrence like a call from the police.
So here’s my holiday advice: have a talk with your parents about the plan for their long-term care as they age BEFORE you face a crisis. It may not be the easiest conversation you have ever had – but it will be one of the most caring. It will be much easier and effective to have the conversation face-to-face than over the phone.
Ask them what they want. Where do they want to live if they can’t drive anymore? Can they afford to pay for home care? Do they have a will, power of attorney, and/or living trust? (And find out where it is kept!) Ask them what their expectations are from you and other family members.
Now, just because someone forgets to bring the pie to the holiday dinner (for the second year in a row!), it doesn’t mean the person has dementia. However, if that same person starts showing logic problems, like having trouble recognizing familiar places (or people), then these are signs that a person may need a more thorough examination by a doctor.
If Mom and Dad insist they are fine and don’t need to go to a doctor, there are many standardized tests designed to measure a person’s cognitive loss. Two of the most common are called the three-word recall test and the clock test. Both of these can be done at home even by an untrained person and give you some idea if further testing is warranted.
Three-Word Recall Test — Give a series of everyday words to a person and ask them to use the word in a sentence. At the end of this activity, you talk about something else for a minute or two and then ask them what those words were. Folks with normal cognition should be able to remember all three words. This is short-term memory recall.
Clock Test — Draw a simple clock face with the hands showing an hour or quarter hour (i.e. like 3:00 p.m. or 3:45 p.m.) on a piece of paper. Ask the person to recreate that clock on a separate piece of paper after having looked at your version. This is both short-term memory recall as well as simple puzzle-solving or logic. The person must both remember the time AND translate that to a spatial drawing on a separate piece of paper. Normal cognition should be able to show clearly short and long hands pointing at the same area of the clock as the original picture. Deviation could indicate further testing is needed.
If your parent fails one or both of the above tests, or you notice any of these other changes discussed above, you may want to take them to the doctor. Mention your concerns or any observations you have made; these can often help the doctor determine if further testing is warranted.
Lastly, you might want to have your parent take advantage of Medicare’s free annual exam. Under the Affordable Care Act from 2011 onward, every person on Medicare is entitled to an annual exam that will include a cognitive screen as a normal part of the exam. These early measures become baselines to compare against as/when cognition starts to decline.
On the other hand, if you say there’s no need for further testing, i.e., Mom and Dad have already been diagnosed with dementia or Alzheimer’s, your holiday celebrations can still be happy, memorable occasions. The holidays are full of emotions, so it can help to let guests know what to expect before they arrive. The Alzheimer’s Association (www.Alz.Org) makes the following suggestions:
If the person is in the early stages of Alzheimer’s, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat himself or herself. Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.
If the person is in the middle or late stages of Alzheimer’s, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited. These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.
Telling others about a diagnosis of Alzheimer’s or dementia is one of the most difficult steps for people diagnosed in the early stages. There may be anxiety surrounding who to tell and worry about social stigma. Be open with friends and family about the changes that are taking place. Educate them on the disease and tell them how they can be supportive.
Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.