Dealing with early Alzheimer’s disease is, my family is learning, in many ways, worse than where we are now, in late Stage 5. The worst part is when you don’t know what’s going on, making excuses for the behavioral changes, and financial disaster. My father always lost things. I managed his small office for years, constantly going behind him, keeping track of fuel reports, gas card receipts, tax records, bank statements, and anything he would need to keep a business going. He was constantly losing a wallet, keys, or misplacing something. Consequently, we just fobbed things off as just same old same old.
After getting to know other families who are dealing with the same mess, I’ve begun to realize there is almost an ‘Alzheimer’s Personality’. It does not run in the family. On my mother’s side of the family, there is a history of TIA strokes that begin in the 70s, and lead to dementia. If you know what to look for, and how to get those quickly treated, you save the brain, something that did not happen with my grandfather Froehlich. When you eliminate the TIAs and start going back into a person’s past, you come up with a few interesting coincidences, that many Alzheimer’s sufferers have.
- Someone who always lost things
- Never bothered learning new skills
- Content to just sit, read and vegitate
- Never did puzzles, word games, or computers
- Someone who wanted a nap instead of a hobby
- Control junkie
- Type A business personality
- Always had to be in charge
- Almost lackadaisical with financial records
Then add the following:
- Brain injury
- Military or traumatic PTSD
- Lyme Disease
We battled with my father for years, over these things, way before even the early stages of Alzheimer’s began to develop. He never wanted to learn a new skill. Just getting him on a cell phone was a battle, then it became attached to his ear, almost. He never did puzzles. He never had a hobby. He began working in 1932 when he was 7 years old. His father had lost everything in the Crash. My father sold paper roses for a neighbor who made them – 2 for a nickle. He made enough money to buy a quarter’s worth of kerosine so his mother could cook dinner. He worked every day for the rest of his life, until we talked him into retiring about 12 years ago. He never played. He took his finances very seriously, to the point where he was in absolute control, absolutely.
Cracks in that absolute control began about ten years ago. Long story short, we did not catch the Alzheimer’s in time to ward off absolute disaster. One of the reasons we did not is because we did not know the early signs of the disease. And – no – they are not mental, they are very specific physical problems. The other day, I learned that it was caused by changes in the Glutamate Receptor in the brain. It is directly related to the central nervous system and the regulation of muscle tone. That’s a very big deal.
There is a change is spacial skills. There is also a subtle change in two distinct physical activities.
- It becomes strangely difficult to get up from a table. My father has been dealing with this for nearly 8 years. He cannot stand without holding down on a table top. It may be the first physical process to be lost to the disease.
- A person with Alzheimer’s has difficulty going down a flight of stairs. It isn’t the climbing, but the way the foot is put on the stair, with the heel almost catching on the back of the stair. It’s very weird the way he does it. It’s like his mind can’t get around putting the foot down on the stair.
You add this to a growing hostility to anyone who wants to help with finances and there’s a problem. It reminds me of my oldest niece, Rachel, when she was a little kid. She’d be on the phone, not wanting to give it back to her mother. We would keep asking questions until she said ‘no’ so many times, her mother would realize the conversation had come to an end. It’s a little like that. The out of sorts individual with Alzheimer’s is so irrational about money, so mean and nasty, that you know you need to do something about it.
The first step is to get at least additional two people as primaries on all accounts. It is a matter of taking control, while you can. You MUST get a POA (Power of Attorney) while the person with Alzheimer’s is lucid enough to know what is going on, with a physician and attorney signing off on it. NEVER let that original POA out of your control. Copies are to be rarely given. When they are, each page needs to be notarized. Those are what you grudgingly distribute.
NEVER trust a banking institution with a POA.
Once this is established, you need an end of life directive, or when to pull the plug. It sounds cold and cruel, but you do this now, while your loved one knows what is going on. Once again, this must be attested too that they are lucid. The parents did theirs the same time they signed the trust, and the POA. Everything matches. I also have copies of the physician’s directive that my father was lucid when this occurred.
The last thing you want to do is to be forced to go to court and have the person declared incompetent. It costs a small fortune. It ruins families. Alzheimer’s is ruinous enough, without an unneeded financial battle.
When we hit the process with my father and the disease, he was far enough into it that my mother decided not to tell him what was going on. She did, one time. He told her he wanted to go out and do things until he started to drool. He loves going out and visiting with people. He enjoys going out to eat. The more active he is, the better, with limitations. He will be 90 in June. He’s old and he’s tired.
The disease strains family relationships. My sister and I are fortunate that neither one of us is going to scam the other. She is very good at dealing with dealing with financial things and people. I have no patience for it, and just end up telling someone to go to hell. Because she’s a trained nurse, she handles anything medical. I do just about everything else with our mother as primary care giver.
Our mother willingly wanted someone signed on to the primary accounts, POA, and end of life directive. The very process of doing that tells us that she is ‘with it’. When the parents took their tests for lucidity, my father, who was in maybe Stage 3 at the time, passed with flying colors. My mother, who has no problems, flunked it! They are now saying that specific test is almost worthless.
The fact that the person with Alzheimer’s is finally being recognized as a walking financial disaster is finally being addressed. I was reading that many clinicians don’t understand the financial problems we’re facing. According to a recent study, they need to understand their role in helping families deal with the financial impairment that is ruinous.
As we go, I am finding that various and sundry organizations established to help families deal with Alzheimer’s are basically a crock. If you have a good GP, you’re in luck. You also need a good pharm who can explain the medications, if you need them or not. You will find, as we have, that knowing someone who has gone through what you are experiencing is the very best kind of help there is.
You also need to be aware that a POA is only as good as the paper on which it is written. All that needs to be done is to rip the thing in half, and it’s over. There are so many unscrupulous people out there, just waiting to score off the elderly. That includes family members who can swoop in, have their loved one declared incompetent, take over their life and dump them in a nursing home to die. To do this you need a sleazy lawyer. I’ve seen this happen, unfortunately.
One of the real problems is the fact that the family is usually the last to know about things. We don’t want to face what is going on, because of that dread “Alzheimer” word. There are predators out there who know what to look for, and take advantage of it. This happened to my father. We will be paying the price the rest of his life. That’s why I said, never trust bankers and brokers. They are out to make a buck, and it is off your loved one.