Experiencing something personally, in real time, is very different than reading about it, talking about it or observing it.

I use as an example my father, who died in August.

He was an extremely intelligent man with a master’s degree in engineering and an M.B.A. from the Kellogg business school at Northwestern University. His engineer training made his preparations for just about everything very thorough.

When the early signs of his dementia arose, he was quick to get the usual recommended documents updated.

I have read about the progression of dementia. I have talked about it and I have observed it in other families. My purpose here is to emphasize that living through it is a whole other ball game.

Our plan worked, and from the outside it worked very well. Dad was active for the first couple of years. During the last few months, he had a couple of minor slips but never had an injury of real substance and he never injured anyone else. Other than his last five days, he stayed at home.

Financially, the elderly, particularly those with cognitive issues, are very vulnerable. They can make poor decisions and they are targets of fraudsters and scam artists. Dad spent money on things he didn’t need and there were plenty of attempts to scam him, but the financial damage he endured was minimal.

These good outcomes were the result of good planning, good execution of the plan and some safeguards we used. At the core of this success were the estate planning documents, particularly the power of attorney and a trust. My parents are not well-to-do and have no tax issues to worry about. Their story illustrates how estate planning is about much more than taxes.

As Dad’s faculties declined, my mother used the power of attorney to get the bank to tighten things up. My father was responding to offers of new credit card accounts, personal loans and home equity loans. She got the bank to stop that.

As the disease worsened, his sleeping pattern got out of whack. He’d be up all night watching infomercials and surfing the net. Things my parents didn’t need would arrive at the house. Sometimes my father would argue that he did need some of these items, but in time he wouldn’t have any recollection of ordering them at all.

Mom first lowered the credit limit on his cards, so if he bought something unneeded, the amount to deal with would be less. Eventually, she had to shut down his credit cards completely.

In time, Mom also removed him as a co-trustee for their living trust. The document simply required a letter from two doctors to remove him. It kept him from being able to access the brokerage accounts, write checks or do any online banking. No court hearings, legal fuss or costs were necessary.

The non-financial documents worked well too. When my sister arrived at my father’s hospice, she had an instantaneous and negative reaction to the news he was not being fed. Mind you, she knew he was not expected to live more than a few days and that there was no hope of recovery. But she thought the lack of nourishment was cruel.

His living will was a huge help to her and the rest of us in this matter. The document read, “if I have a terminal condition; or I have an end-stage condition; or I am in a persistent vegetative state; and if my attending physician and another consulting physician have determined that there is no reasonable medical probability of my recovery from such condition, I direct that life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong artificially the process of dying, and that I be permitted to die naturally with only the administration of medication or the performance of any medical procedure deemed necessary to provide me with comfort care or alleviate pain.”

The definitions of terms in the document were equally clear. So was this sentence: “It is my intention that this declaration be honored by my family and physician as the final expression of my legal right to refuse medical or surgical treatment and to accept the consequences for such refusal.”

The document quickly turned my sister’s thinking from what was being “done to Dad” to “What did Dad want?” The statement of his intent and request for his family to honor his wishes transformed the whole matter into one that brought peace to my sister and the rest of us.

This scene might seem familiar to readers. But the reality of how it all went down isn’t nearly as tidy as these words describe it.

Those banking changes happened over time, and at each stage Mom had the same argument with the bank. My parents had been bank customers for 30 years. The personnel at the branch knew them and knew early on of Dad’s diagnosis. They were very nice, but they also did not have the authority to accept the power of attorney. Each attempted use of the document was met with an approval process that took far too long.

I understand that institutions should not blindly accept the validity of such documents, but the red tape was too much. The bank rightly was looking after Dad’s rights but it was also leaving my mother vulnerable as it covered its own behind. Other institutions were easier to deal with. The power of attorney is an important document, but its usability will vary from place to place, and clients need to be prepared for this.

I was not happy with some of the doctors we dealt with. They were all fine practitioners, but they were also hesitant to put in writing that Dad should not drive or manage his finances. In Florida, you can tell the DMV about an incompetent driver and the department will look into it. One doctor said he would write the letter for the department. After two weeks, we learned from the umpteenth follow-up call that the office manager had given up asking the doctor to sign it.

When we finally got ahold of the doctor, he said upon reflection he couldn’t write the letter because he had not observed Dad driving. Fair enough, but if that’s the case, he should have told us up front so we didn’t have to keep asking for a letter that was not coming.

Mom finally reported Dad to the DMV herself. When he fell asleep during the interview with the department, the state rescinded his license. He still tried to drive. He even snuck out of the house when Mom went to take a shower. We eventually persuaded Dad to “loan” the car to my nephew for the summer, and the car never came back.

When it came time for the two letters to remove him as trustee, the first letter that arrived wasn’t from the physician. It was signed by a social worker. It stated that Dad was under the doctor’s care and that Dad shouldn’t manage his own finances, but it was not an attestation from the doctor. Heck, the social worker didn’t even say that the doctor found my father to be incompetent. It read as though that were her opinion. Cleaning that up took extra time.

With respect to his physical care, Dad wanted to stay at home as long as possible, and Mom wanted him home too. The care plan was that as he declined we would increase the level of care accordingly. We had our sights on where he would go when it was too much for Mom. We knew what to do, but assessing when to do it was difficult at times, even excruciating.

There was a period during which Dad was not so bad off that he needed to go into assisted living, but he was bad enough that part-time home health care wasn’t cutting it either. The home care got him bathed, groomed, fed and medicated and it gave Mom some respite and help around the house, but he would be up all night. She would awaken every morning to some kind of mess. She worried constantly and didn’t sleep well.

Three things got us through our experience. We had the documents we needed, my sisters and I were willing and able to help out, and Mom had others that could physically help or provide emotional support.

My recommendation to any financial planner who has clients with a dementia/Alzheimer’s diagnosis is to talk with the caregivers in the household about these issues and help them connect with support services in their area. They are going to need them no matter how good the financial and estate planning may be.          

 

Dan Moisand, CFP, has been featured as one of America’s top independent financial advisors by Financial Planning, Financial Advisor, Investment Advisor, Investment News, Journal of Financial Planning, Accounting Today, Research, Wealth Manager, and Worth magazines. He practices in Melbourne, Fla. You can reach him at www.moisandfitzgerald.com.