You've heard the statistics. You've watched the news reports. You may have even seen Alzheimer's disease in person-from a safe distance. But until the Big A hits your mother or your husband or someone else in your immediate family, you really have no idea what to expect.
To join the ranks of those who care for a person with dementia is to make an overwhelming life change. Trying to explain it is like describing the ocean to someone who has never seen it as "a big body of water." You won't understand until you live it. And make no mistake: You are going to freak out.
It's okay. Go ahead and freak. Just realize—and I can say this because I've been there—that your life isn't over. It's different, sure. Tougher. Sadder. More frustrating. But it's also likely to be sprinkled with moments of joy and humor and love that you'll perceive in a deeper way precisely because of your new frame of reference. (Basically, you're putting on a new pair of glasses.)
After the tears dry up (the first bout, anyway) and you start to pull yourself together, there are certain things you'll need to do right away. These things will make your life and the life of the person you're caring for better:
First, take some deep breaths. Right now, your past, present, and future are all whirling around you. This is normal. Until you calm down (and you will, it just may take some time), let your emotions flow; then take a few deep breaths and know that with the right guidance you can get through this. Deep breathing will help you remain calm and give you the control that you will need. Realize that you are here, now and present. What you're aiming for is a mental shift that will give you the presence of mind to do all that needs to be done.
Get a second opinion. Doctors are not infallible and sometimes they get it wrong. Who gave the diagnosis? Was it her primary physician, cardiologist, or internist? Even if it was a neurologist, get that second opinion. Who read the radiologist's report? Know that many doctors will put down an RX for stroke and that's what the radiologist will scan for. What is the age of the MRI machine? Know that Medicare pays for the scan whether it's in an older machine or a newer one.
Read up on the diagnosis. Dementia affects everyone differently. What's more, there are over 86 different types of dementia, and most people have more than one type. Life spans, memory, medication, and behaviors will vary depending on the diagnosis. Not knowing which variety of dementia you're dealing with is a recipe for disaster. So do your research.
Realize that a diagnosis of Alzheimer's is not a death sentence. It is a mortality check. Our time on Earth is short, and any diagnosis will bring home to us the reality of the fragility of life. A person with memory loss can live anywhere from 1-25 years depending on the diagnosis. In fact, having dementia does not mean the person you love will not succumb to some other life-threatening illness such as cancer or a heart attack or an accident. Getting this perspective will help you cope with the diagnosis now, and later it will help you stay in the moment and make the most of the time you spend with your loved one.
Call a family meeting. Once you've had a chance to digest what's happened, it's time for the "family talk." This is the time to explain to other family members the diagnosis, discuss what needs to be done, and decide who's on board to help and who is going to jump ship. It may sound harsh, but being upfront will make life simpler for all in the long run. Be realistic and prepared. It's better to know upfront that you are going to be going it alone than deal with ongoing anger and frustration when other family members let you down.
Face financial realities head on. (Surprises suck!) Many caregivers just assume the family homestead is free and clear from mortgages. Don't. You might find that your parents refinanced-several times-without telling you, and the home is upside down and actually in debt. Older homes need more work and neighborhoods change-this all needs to be factored in for living arrangements and future care costs.
Take immediate action to get your loved one's financial house in order. While she is still able to tell you, get bank account information, PIN numbers, and so forth. If she is computer savvy, get passwords and login info. Make a list of all insurances, employees' benefits, pension plans, etc. and check the beneficiaries. Also note safety deposit boxes (some people have more than one), brokerage houses, IRAs, stocks, mutual funds, and annuities.
Get health insurance in order, too. Policies change and so will your loved one's needs. Today's plan might be great for a "well" person but not one with dementia. Check her current coverage, including her prescription drug plan. Read the plan carefully for what it will cover when your loved one needs to be hospitalized and then requires a rehab facility. You should also check out the facilities before she needs to use them.
Pull all necessary legal documents together. Now is the time to get the "big three" in place: living will, durable power of attorney, and healthcare surrogate. People change, relationships change, laws change. The person who may have been chosen as caregiver years ago may no longer be around or may not be appropriate at this time. Legal documents should be reviewed every three years. If Mom is still capable of making good decisions, now is the time to talk about and make these changes. Nobody knows what tomorrow will bring, and a sudden illness or fall can cause a huge decline in mental functioning, so don't delay.
Get a handle on your own needs regarding your loved one. I will write more about this in future blogs, but for now, realize that as your loved one changes, so will the dynamics between the two of you. For example, a woman who has always looked to her husband to be the "leader" will now need to take on that role. This is a huge psychological shift to make and it is deeply distressing. The truth is, we don't like it when people change because it forces us out of our previous comfortable existence.
Often, people refuse to face the truth about Alzheimer's because it is just too painful. As comfortable as denial may be, the sooner you "rip off the band-aid" and take an unflinching look at the future, the sooner you'll be able to create the best possible life for your loved one and yourself-a life that's still worth living.
Please check back here for my next post on tips to help you actually make the right plan for you, your loved one, and your entire family.