Here's an awareness piece I've been working on. I thought I'd share it here. In the course of your life you are very likely to find yourself needing assistance, or acting as a caregiver; maybe both. This piece is intended make the reader think about their own life and what would happen if the reader needed help, or if they needed to help someone else. Whatever else you do, try to stay healthy!

A Word of Caution for the Elderly


Working with friends and family members who fall in the low income or poverty level, I see first hand how the policies and procedures of governmental and private institutions screw them over. This is especially true for older people with dementia or neurological problems. I don't think this situation is intentional, but I also don't think our institutions do anything to relieve the problems.

Even if you enjoy a middle income revenue and have some savings, you really should think about how you will manage your life if you need assistance one day. I'm sure most or all of you have a will and trust and your estate planning documents no doubt include a Power of Attorney and a statement of your healthcare wishes. That's all great, but that really isn't what this is about. This is about the realities of living with dementia.

Do you really need to worry about dementia? If you plan to live longer than 65 years, the answer is yes, and becomes a more emphatic yes with each additional year of life after that. One study performed by Columbia University found that dementia or cognitive impairment effects 30-35% of the population between 65 and 90 years of age. A report authored by the Alzheimer’s Association shows 10% of adults over 65 will develop Alzheimer’s disease and that number rises to about 33% at age 80. The Parkinson’s Fondation claims that 1 million Americans have been diagnosed with Parkinson’s disease and that 90,000 more are diagnosed each year.

People suffering from dementia tend to go through stages of acceptance much like the stages of grief. First there is denial where people dismiss their inability to concentrate, remember, or perform tasks requiring several steps. As the problem gets worse, people often get angry with themselves and others. By the time they seek medical help, the disease is usually much more advanced than when the sufferer first took notice of the problems. Seeking help from the medical community means that there will be a one to three month wait before a specialist has an available appointment. It isn’t unusual for the first doctor you see to refer you to a second or a third, all taking months before they can see you. Treatment may not even start until three to six months after the person makes the first call to a doctor. While treatment can offer improvement for some sufferers, for many it simply slows the speed of progression. What will you be able to do and not do for yourself, and how quickly will your needs for assistance increase?

I find that many people don't even think about what level of care they are going to need until after they already need it. Can you get by with some occasional help from a loved one? What kind of help will you need? Will you require visits from professionals several times a week? Several times a day? Will you need assisted living in a facility or even a nursing home? People should be aware that assisted living costs in Massachusetts, for example, range from $4,000 to $11,000 per month depending on the level of care needed. Nursing homes average $14,000/month. By then it is often too late for the person to utilize their own money in a way that protects the assets you are allowed to keep, and to use your assets efficiently to secure the services you need. People are usually too busy struggling to meet their living necessities, societal requirements and making ends meet to plan for an assisted life. But you should think about this and take some important steps before you need help.

Here is a list of things I think you should do while you still have your wits about you. I’m sure there are actual experts that have a different list, so think about talking to one of them as well.

1. Find out if there is a family member or two who will agree to assist you with the management of your affairs when you are no longer able to do so. Try to pick someone with a good record of fiscal responsibility and a strong sense of right and wrong. Don't assume that someone you think you can count on will just step up when you need them. Ask them, discuss what they might be asked to do and make sure they are willing to do it. If you can’t find anyone (and that isn’t unusual) you’ll need to consider a professional guardian. That isn’t cheap. See if your state has a state provided guardian program and what is involved.

2. Once you have identified a trustworthy person who will agree to help you in the future, be sure to talk with a Medicaid expert to organize your assets is advance of the time you may actually need Medicaid. It can take many months to qualify for Medicaid and start receiving benefits. You don’t just make a call and get a check.

3. Beware of fraud. It's heartbreaking, but I've seen older people robbed blind by people they thought they could trust. Again, now is the time to do your due diligence and line up the right people to help you in the future.

4. Closely related to 3. Above, beware of physical abuse. Most studies and statistics show that 60% of elder abuse occurs in the home, often by family members. Sometimes this is is intentional, premeditated abuse. Sometimes it is born of the frustration that comes from dealing with someone who is cognitively limited. Not everyone is cut out to help the elderly.

5. Don't give people your bank cards, account numbers or passwords unless they are people that you literally trust with your life. Trusting people with that kind of information is exactly that.

6. How close do you live to the people who will help you when you need them? If you live hundreds or thousands of miles away, you can’t expect them to get things done quickly or efficiently. Your helper can’t just call your bank and get your financial information over the phone unless you have added them to your accounts. They can’t pick a place for you to live, find you a care giver, or navigate your state’s agencies without going through a steep and long learning curve and making more than a few mistakes along the way. I liken helping a long distance relative to building a ship in a bottle.

7. Take the time to add trusted relatives to your various accounts while you have your wits about you and you can handle the process yourself. Talk to your bank about the options they have for a second person on your account and try to find something that makes you comfortable. Learn about trusts, guardianships and Powers of Attorney and what they can and cannot do.

8. Even if you hate the internet, try to establish on-line access to all of your accounts. Make a list of the account names and passwords. If you don’t know about password security you can do something as simple as making a passworded document of all your passwords. Establish an electronic Social Security account. It allows you to check on your benefits and deductions and change where your monthly payment is deposited all online without having to call the SSA. This will make things much easier for your caregiver. Social Security doesn’t really recognize POAs, so it is necessary to make sure your payments are sent to a bank electronically where your POA can then use them for your benefit.

9. Make sure you have an understanding of what Medicare covers and what Medicaid will pay for in your state. Each state has control over their Medicaid program. But whatever state you live in, I think you’ll find Medicaid moves pretty slowly. They are not going to jump in the moment you need them. You can expect to need two to four months of assisted living rent in reserve, assuming your state Medicaid program pays for assisted living. Find out now what the eligibility limits are for Medicaid. You will find the maximum income levels are very low, the value of assets you may retain is also very low and it is easy to find you do not qualify for Medicaid, even though you need the money and services.

10. Call in-home service providers and visit residential facilities for yourself to try to decide which provider you would like to use when you need it. Not all facilities accept Medicaid clients, so find out what's available. It’s great if you have a list of professional agencies all ready for your care giver to call when you need the help.

11. Consider moving. I’m not kidding. If your family lives in another state, hundreds or thousands of miles away it might be time to move.

Every one of these considerations will give rise to questions and choices you or your care-giver will need to answer or make along the way. I recommend you get started. I know I have.

 

Hello LB…Excellent post. Having been the responsible party for several relatives, I know the importance of being prepared. It does help to be organized and get help when needed. Fortunately, my relatives had the financial means to afford good care in the last years. But it is a lot of work to be that responsible party. There is no getting around it. I hope everyone heeds your advice for their own future if they have not already.

 

Good information presented here. Never too soon to start planning, as time slips away quickly.

 

Hey Bill, Happy New Year.

Re: #4. Our granddaughter is now a nurse in the ICU of a trauma hospital in RI. She had lunch with us yesterday. Sadly one of her elderly patients with dementia is a victim of abuse by her daughter/caregiver. It happens more often that one might think.

 

Hi LB! Glad to see you post, presumptuous acknowledgement if you've dealt with something recently that made you care enough to write it.

Early conversations are key. By the time you need to do things, it can often be too late. Besides the time you mentioned to get things initiated, from a pure financial point, there's often look backs for years to find assets.

My mother started her planning after my father passed away 20 years ago. She was 65 at the time. I'm 30 mins away, one sister is an hour away, other is in Pittsburgh. Cindy and I are starting - the will, POA, and other docs are on our list to get done this year. My aunt did very little preparation, had surgery and ended up losing a leg. She lives in an nursing home now and her only son is 2 hours away with a wife who "doesn't like to drive him out there". He doesn't drive. It's a horrible situation and we try to help where we can (she's 5 minutes from my Mom), but it isn't our responsibility. Why they didn't find her a home near them is utterly mind-boggling. (Although we can all read between the lines here). I see my Mom weekly, so we try to visit my aunt every other as part of the day.

We have another cousin who did move from Brooklyn to NJ (near my Mom as well). He's in assisted living. Having family nearby lets us visit. He has no kids and is the only one left on that branch of the family tree. A cousin flew in from Ohio this week, so we're all meeting for lunch today. He is starting to face some mental issues, whether its normal aging (86) or something more isn't determined yet.

We have tried to get Cindy's Mom to move. While only an hour away, she would do better being closer. But, and I suspect like many older people, she's 75, lived in the same house for 50 years, has her 3 good friends, is too stubborn or set to even talk about it. Her house has very steep steps to the basement - even I don't like walking them - and her laundry is down there. Cindy and her brother (in Florida) both try endlessly and she won't even entertain the conversation. She's set financially and bought LTHC when it was first offered and is some super plan (on paper).

 

Thanks, Bill. It's great to hear from you, and the thoughtful and thought provoking post is a bonus. I hope the occasion finds you in reasonably good physical health. Unless that post came from ChatGTP, you seem to be as sharp a ever mentally.

 

Thank’s Bill,and Happy New Year.

 

Bill, great to hear from you. Nice you came off your boat to get in touch. Good advice.

 

I haven't read the entire post of Bill's yet but I agree with you, Dave. I'm happy to know that Bill is still alive.

 

Frankly I'm disappointed. This is a great article but it reminds me of how much we all miss Legal Bill and his valuable contributions to this forum.