Alzheimer’s Secret #3: They are lying to you.
When you are caring for a parent or spouse with Alzheimer’s I expect you are looking for guidance from professionals like me. Unfortunately, I can tell you unequivocally, whoever is giving you advice is coming from a very self-serving place. Be warned, they have an agenda, and if it matches yours, well that’s just a happy coincidence. Because they will do their best to twist the particulars of your circumstances to convince you of what they want you to believe.
Whatever your goals are for you and your loved one; keeping your parents in their own home, or finding a community to move them into. When you go out into the marketplace to help you make your decision, you will often be met with thinly disguised sales people. They may call themselves placement counselors, or family liaisons, but their sincere advice is rarely motivated by what’s best for you, and more likely what’s best for them. I have sat in the training classes that teach us how create anxiety in such a way that the best solution is the one we want you take. Often, they consciously steer you away from alternatives that serve your goals, and emphasize the parts that support their goals.
I am sure this has happened to you already. You may have suspected it, but you may not have wanted to give people the impression that you were a paranoid jerk. So maybe you nodded, and heard them out, and you walked away feeling like something important was left out of the conversation. It was.
Let me explain it this way: Where do you go when you are trying to decide on how best to care for your parents? A marketing director of an assisted living or board and care? A placement counselor for a home health agency? Maybe your parent is in the hospital and the discharge planner is helping you figure out what to do with mom or dad when they are discharged? Each one of those people, whether they even realize themselves, is going to try to convince you that what they are selling/suggesting is what is best for you. And in a lot of cases the size of their paycheck depends on their success.
“Surely my doctor is honest”? Most doctors try to be non-committal in non-medical matters, but if they do express an opinion, it is to send you to one of the people I just mentioned above.
Look these folk may be genuinely sincere, and even believe what they are telling you. But their bias is built into how they think. For example, when I was a marketing director of an assisted living, I believed that the best course that any family could take, was to let us provide the care for their parent, so they could enjoy their parents and not have to worry about them. Keeping a frail adult, was a risky proposition, and hiring help around the clock was cost prohibitive. Conversely, when my friend talked about aging in place, she sincerely believed that you should keep your parent at home as long as possible, and hiring aides and companions is the best for all concerned, and in keeping with their wishes.
You could put both of us on a lie detector and it would say we were both telling the truth – even though we were saying the opposite things. The same is true for every professional out there (except one, and I will fill you in on that in a moment)
Of course that’s the best case scenario. I can also tell you that I know of many nursing home discharge planners and hospital discharge planners that get a kick-back whenever they can convince you to move your parent into a board and care home that they are recommending.
So who are you going to believe? You have to decide that for yourself. When you are caring for a parent you must plan ahead. One thing that I tell adult children all the time is…what is the one thing that you absolutely do not want to do? Change your mother when she is bowel incontinent? Give your father a shower when in his mind he sees you as his young wife, rather his older daughter? Or is it simply when you have to physically transfer them from the bed to a wheelchair? If you have a line in the sand that you can draw, good for you. The point is only you know what is best for you and your parent.
Here’s a big head start on figuring out where you want to draw the line: go to this site and get my preplanning assessment for free at www.easycaregiving.com/DementiaAssessment and download the .pdf document. you are going to need it anyway, and there is a good chance that filling it out will bring up important questions for you to consider.
Which brings me to that one professional that will listen to your story and advise you based on you and your parent’s wishes not according their job description. A geriatric care manager. (with one stipulation: make sure they don’t work for a company that also provides home health workers because then you have that personal agenda thing again). An independent Care Manager will offer advice based on your needs and wishes, nothing else. You can take what they tell you to the bank because they serve no other master but YOU their client
You can find a geriatric care manager in the phone book or with a Google search. Just put in your city or town and the words ‘care manager’. You can get recommendations from places like the Alzheimer’s Association and other non-profits. If you are in a more rural setting, you may have to work with someone via email or the telephone. But please do find someone.
You can find