How to Plan and Pay for Your Long-Term Care

This week's blog is by guest writer, Hazel Bridges of AgingWellness.com, a website that "aims to provide health and wellness resources for aging seniors." Do check her website out. It is well worth a review. As usual, I've added a few comments in italics.

No one wants to think about a time in their life when they could lose their independence. However, when you or a loved one has dementia, anticipating and planning for long-term care needs will help you save money and stress in the future. As with many things in life, it's better to be safe than sorry. Plus, having a plan in place will give you immediate peace of mind that you or your loved one will always be well cared for. Here are some practical tips to get you started.

Assessing Your Risk of Requiring Long-Term Care

Is There Illness in Your Family?  Knowing your family history of disease can reveal which illnesses you should be prepared for and what preventative measures you can take now. If you have close relatives with diabetes, heart disease, high blood pressure, osteoporosis, or cancer, your chances of winding up with these issues may be higher than normal. Everyday Health recommends obtaining your family medical history by talking to family members, looking at family documents, and reviewing death certificates. If these diseases run in the family, they can cooccur with cognitive decline, making independent living even more of a challenge.

What Does Your Lifestyle Look Like? The lifestyle choices you make right now will affect your health as you age. One study even found that lifestyle has a greater effect on life expectancy than genetics. For example, people who don’t smoke, keep their cholesterol low, and maintain their fitness in their 50s are more likely to see their 90th birthday. When you move into an assisted living facility, your dementia care experts can help you maintain positive habits that will increase quality of life.

Your Options for Funding Long-Term Care

Long-Term Care Insurance. Traditional long-term care insurance can give you the customizability to choose your amount of coverage and how long it lasts. However, you will never see this money if you don’t end up needing care. On the other hand, many insurance companies offer hybrid life insurance and long-term care policies. This type of policy will help you pay for your long-term care if you need it and will pay out a death benefit to your beneficiary if you don’t. (LTC insurance is something you need to get years before you need it. I did, but now the cost of it has increased so much that I had to decrease its benefits to be able to keep it. Do check out the company's options for things like rate increases.)

Medicare. Medicare helps pay for medical costs for people 65 and over, but it does not cover the majority of custodial long-term care expenses. Many people choose to supplement this coverage with a Medicare Advantage plan. Plans vary state to state, but MA plans generally cover extra expenses like vision, dental, and prescriptions. (While coverage of these extra expenses is very helpful, MA plans usually still do not cover custodial long-term care.)

Your Home’s Equity. A reverse mortgage can help seniors pay for long-term care expenses by using their home’s equity. You can either receive a lump sum of cash immediately or receive monthly payments throughout retirement. Importantly, you still have the right to remain in your house even if you exhaust all of the equity in your home. Most often, the lender recoups their money by selling the property after the last spouse passes away or moves. Keep in mind, a reverse mortgage means that your estate will decrease over time, so you’ll want to think carefully before jumping into this decision. (Also be sure to check out all the ramification and use a reputable company for your reverse mortgage. (While this can be a welcome answer to a difficult problem, there have been issues when an uninformed home owner was encouraged to obtain a less than attractive reverse mortgage. Consider getting a second opinion before making the final decision. You need to know exactly what you are getting into.) 

Another way to pay for long-term care is to sell your home outright and downsize into a smaller space. This can be a viable option, but if you’re considering it, it’s a good idea to get an estimate on your home’s value.

Health Savings Account. A Health Savings Account (HSA) is a good option for people who are covered by a high-deductible health plan. You can make tax-free withdrawals at any time when you use the money to cover medical expenses. You can also use the money for non-medical expenses but you will have to pay income tax on it.

Talking about your plans for long-term care may be an uncomfortable conversation to have with your loved ones, but it's an extremely important one. As many as 52 percent of people will need long-term care at some point in their future. Instead of worrying about what the future holds, be well-prepared so you can you can focus on your health right now! (Hazel is so right! Uncomfortable or not, talking about long-term care and planning for it is super important. Also if you and your loved one talk about this early on, while they can feel as though they have a role in the planning, it will go easier when the time comes to put it into effect--even if they don't remember the conversation.)

References:

history of disease 

family medical history

One study

long-term care insurance

think carefully

get an estimate

Health Savings Account

52 percent of people

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Medicaid Requirements for Long Term Care

(Italicized words are defined in the mini-glossary below.)

Residential care is expensive…more expensive than many of us can afford, but there is help in the form of Medicaid. Each state has different names for this and different standards, although some things are basic government requirements. If you have assets that you want to pass on to your children, you need to start planning early. Any assets you give to your family beyond minimal amounts in the five years prior to your “snapshot date” will still be considered yours when eligibility for financial assistance is determined. This includes trusts. Always consult an elder attorney before making these plans, but here is a simplified outline of what is offered.

The following Medicaid requirements take into consideration the Federal Spousal Impoverishment rules:

• Countable assets of both spouses are totaled as of the date the institutionalized spouse enters a hospital or long-term care facility and stays for at least 30 days.

• The community spouse can keep ½ of this total, up to a specified amount (from $23,844 to $119,220 in 2016 depending on the state). State rules differ. Some states allow the community spouse to keep up to the specified amount of the combined total instead of being limited to half.

• Income of the institutionalized spouse is counted for eligibility, but in most states, that of the community spouse is not.

• The institutionalized spouse can keep about $2000 (differs with state).

• The rest of the institutionalized spouse’s assets must be ‘spent down’ before they will be eligible for Medicaid. This can be spent only in certain ways. For example, it cannot be gifted, except in very small amounts. Don’t wait to give your children anything you want them to have. If you wait too long, it may fall within the five years prior to your snapshot date and will be counted as still belonging to you as far as eligibility goes. Consult an elder attorney about the ways to give gifts, and the limitations involved.

Post eligibility requirements:

• Community spouses with higher incomes may be required to help pay for cost of the institutionalized spouse’s care. (Varies with states)

• If the community spouse’s income is less than the state’s minimum monthly maintenance needs allowance (MMMNA), then they can keep some or all of the institutionalized spouse's income. (up to $2002.50 a month in 2016)

• The home equity of the institutionalized spouse must be less than the state standard ($552,000.00 to $828,000.00 in 2016). 

• The institutionalized spouse is allowed to keep a personal allowance of $60 a month.

• The institutionalized spouse’s medical costs are also considered.

• The institutionalized spouse is required to pay the institution what is left of their income after deducting the amount the amount that can be kept by the community spouse, their personal allowance and the allowed amount for medical costs.

It is always a good idea to consult an elder attorney when planning for retirement, long term care, and upon a diagnosis of any eventually incapacitating disease such as Parkinson’s or any dementia. At that time, ask about Medicaid requirements for long term care and how they apply to your specific situation.

Be aware that these requirements can change as the lawmakers in Washington DC hammer out new rules for the Affordable Care Act.

Mini-glossary:

Assets: Anything of monetary value: real property, art work, savings, pension plans, stocks and bonds, cash, etc.

Community spouse: the spouse who is NOT living in a hospital or residential facility.

Elder attorney: A lawyer who specializes in laws concerning the elderly.

Federal Spousal Impoverishment Rules: Medicaid rules which provide special protections for the spouses of Medicaid applicants to make sure that they have the minimum support needed to continue to live in the community while their husband or wife is receiving long-term care benefits.

Home equity: The  fair market value of a home, less debts, divided by the number of owners. Thus the institutionalized spouse’s share of a $900,000 mutually owned home where $100,000 is still owed, would be $400,000.

Institutionalized spouse: the spouse who is living in a hospital or residential facility.

Medicaid: Called by different names in different states. There are basic federal requirements and payments but states can add to these.

Minimum monthly maintenance needs allowance (MMMNA): a minimum monthly income standard for the community spouse, set at one-and-one-half times the Federal Poverty Level for a single person living alone. ($1,991.25 to $2,980.50 in 2016)

Residential care: Care in a hospital or an assisted living, memory care, rehabilitation or nursing home facility for at least 30 days.

Snapshot date: the date a person enters a hospital or residential care facility for a stay of at least 30 days.

For information about Medicaid requirements for long term care specific to your state, go to Find an Attorney, click on your state, and then "Key Medicaid Information" for that state.

For more information about Spousal improvishment standareds:
2016 SSI and Spousal Impoverishment Standards

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors or lawyers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's or lawyer's advice.

Long Term Care Placement Earlier Rather Than Later

Issues around long term care (LTC) are always a major topic at caregiver support groups. Marla, a surviving spouse said:

“I would have only considered residential placement for Bill after he was so far gone that it wouldn’t matter where he was. It didn’t come to that and I’m glad. Bill had a bad heart and he died when his pacemaker quit working. Now I’m learning that perhaps entry into a long term care facility is better sooner than later. That if a person has enough social skills left to interact with others in their new home, they will be happier in the long run. I would never have considered that. I always thought that if residential placement had to happen, the later the better. That it was better to keep him at home as long as I possibly could."

This very common view does not take into account the fact that emotions last much longer than thinking and memory. It takes a certain amount of social skill to adapt to a new home and feel emotionally connected with it. Wait too long, and it just won’t happen. With LBD, there will always be periods of better awareness and functioning. During those times, a person who entered long term care with few remaining social skills is likely to feel very lost, scared and lonely during those times of awareness.

When you first place your loved one into LTC, your job is to help him adapt. Left alone, he’ll likely stay in his room. Even if his social skills are still present, they are seldom up to taking the initiative. That’s your job. As you go out and visit, join in the activities and such, he will follow. As he begins to feel more comfortable, he will be able to participate more.

You may want to stay with him most of the time but you need to have time away during the day. He needs this too. It will be difficult at first, but these hour or two absences are the way he learns that you aren’t deserting him—that you will return. LBD erodes the ability to learn; if you wait too long, he will continue to feel deserted every time you leave. It takes most people about six repetitions to learn a new phone number—or a new task. Expect your loved one to take twice that long—or more.

Your loved one picks up on your emotions and so the better you can feel about the move, the easier it will be for him to adapt. Choose the best LTC you can, but a less attractive one close to home is better than an excellent one too far away. You need to be able to easily divide your time between home and the LTC. Also, this will be closer to your other activities, such as church. You will be able to slip away for a quick nap at home, or errands or lunch with friends and return, revived.

You are your loved one’s advocate and the expert on what he likes and doesn’t like. It is a proven fact that people who have family in regular attendance get better care than those who don’t. Working with staff to make sure your loved one’s needs are met is a skill in itself. While the staff may be generally caring and concerned about their patients, your loved one is one of many for them. Your job is to make sure he doesn’t get lost in the cracks of bureaucracy without alienating the staff.

You continue to be your loved one’s emotional support. One of the reasons caregivers wait to move their loved one to LTC is that they feel they will lose some of the closeness they have at home. In our just published book, Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, Nancy, a surviving LBD spouse, explains how it worked just the opposite for her:

I wish I’d placed Del in LTC sooner. I was still with him every day, but I went home in the evening and actually slept well at night and so I was more rested—and patient. With the staff doing all the heavy lifting and hard work, my role became one of wife and companion again. We both loved the change.

If Nancy had waited much longer, Del’s social skills might have declined so that he would not have been able to adjust and enjoy the change.

Read A Caregiver's Guide to Lewy Body Dementia, available at LBDtools.com, for more suggestions about caregiving.

Surviving in Long Term Care

You’ve done your homework. You searched out the very best long term care facility you could find for you loved one. And now he’s there and you aren’t happy. You still think it was the best one you could find. The staff is for the most part caring and thoughtful, if overworked. They know their job. But still, it’s not the same. They do things on their schedule and in their way, not yours. Even in a great facility, there will be problems. It’s never going to be like it was at home. Here are some ways to adapt and make this time more enjoyable.

• Visit about the same time each day. Within this structure, occasionally come an hour early or stay an hour late, or even pop in for a little while at an odd time. Your loved one will do better with a set routine but staff does better when they don’t know when you may show up.
• Develop new routines, with activities that both of you enjoy. Your job has changed but it hasn’t gotten any less important. The LTC has become responsible for meeting your loved one physical needs. Your job now is to help your loved one meet emotional, social and intellectual needs. You will find you have more time and energy to do this now too. You can take the time to work a puzzle or read or look at photos or reminisce instead of feeling overwhelmed by the physical chores.
• Develop rapport with staff. Be more generous with your complements than you are with your complaints. (Remember the 3 positives for every negative rule—it applies to staff too!) Bring gifts. Bribes are often as effective with staff as they are with your loved one!
• Look for the positives. Why did you choose this facility in the first place? Was it close to home? Did you like the staff? Does it feel comfortable? Do these things still apply? What else can you identify that you like about it? Don’t forget to include things like you are getting more rest, more “me time,” and that your back isn’t hurting from all the lifting.
• Identify the negatives. Yes, they will be there. Routines that you’ve developed won’t work in LTC. And the LTC will have their own routines that may feel uncomfortable and foreign to you and your loved one. Be willing to speak up and make suggestions or requests when necessary. 
• Adapt. The negatives most likely aren’t going to go away. And so, how can you adapt? This doesn’t mean giving in. It means finding a way so that both your needs and the LTC’s needs are met. For instance, staff turnover is a big complaint. Even when the staff in the facility stays the same, they usually rotate a lot. “I just get someone trained about what Dad likes and they are gone and I have to start all over.” Try writing up a list of things that need to be done and how your loved one wants them done. Then share it with the charge nurse and make sure each new staff is told about it. Most rooms have a dry erase board and you can leave a note about your list on it. Or even write the most important things right there.
• Let go. Part of adapting is accepting that you aren’t in charge of everything anymore. One of the few perks of caregiving is being in control. It is seldom something you wanted, but when you have to give it up, it can be awfully difficult to do. Take time to consciously evaluate when you want step in and make changes in your loved one’s care. If it is something that really needs changing, go ahead. If it is just because “that’s not the way we do it,” reconsider. Relax and give this new way a chance. While familiarity is important to your loved one, he also needs peace. When you are upset, so is he.

Read A Caregiver's Guide to Lewy Body Dementia, available at LBDtools.com, for more suggestions about caregiving.

Kinds of Long Term Care

About a year ago this blog discussed way to make your home Lewy friendly (4-5 and 12, 2013). However, even with an accessible home, you will eventually need help. Caregiving, and especially dementia caregiving, is NOT a job that can be done safely alone. More recent blogs have discussed the red flags that warn of the need for help of some kind (4-25-14). If this is an subject you avoid, you aren’t alone. The 4-14-14 blog discussed common resistances that keep caregivers from asking for help.

For most caregivers, the time will eventually come when they will have to consider placement in a long term care facility. The 9-15-12 blog lays out the main reasons for this, adds some warnings and makes some suggestions about choices. Read this blog sooner than later. This week, the blog is about types of long term facilities available and how to choose the right one.

Residential facilities come in several levels of care:

Independent living. This is like having your own apartment, except that it is within a facility that can quickly provide assistance if needed. These apartments are usually in a multi-level of care facility. People often chose this option so that they can migrate to higher levels of care without leaving the friends they’ve made in the facility. Unless you choose to move here as a couple, your loved one would seldom qualify for independent living.

Assisted living. This is the level of care that many LB loved ones would fit into. The units are usually a small suite, with a mini-kitchen, a private bathroom and a bed-livingroom. Although assistance is readily available as needed, a person must be safe to leave alone and able to cope without fulltime help. Wheelchair-bound people will probably qualify, but only if they are still fairly functional. Some facilities encourage spouses to in with the loved one—often at little extra cost. Then, the couple must be able to cope without full-time help.

Memory care. The level of care may be similar to assisted living, but this is usually a locked unit, due to the wandering that many people with dementia tend to do. Loved ones with LBD may not need to be in a locked unit because wandering is not a common LBD symptom. (However, LBD and AD are often mixed and then, all bets are off.) Memory care units may also be equipped to care for people with more advanced dementia, where heavier nursing care is needed.

Skilled nursing care. The level of care is high, essentially round the clock nursing. A loved one who has become bed-ridden would qualify for this level of nursing, as would one who had become so helpless that they could not assist in transferring.

Adult Family Homes. These are usually smaller facilities and each is different. They are often family run with few staff changes, and much less activity than occurs in a larger facility. They may or may not have patients requiring several levels of treatment. These are all things you would need to explore when researching such homes. However, LB loved ones tend to do well in these smaller facilities that have fewer changes and less stimuli—if the home is well run and the staff are caring.

Future blogs will discuss more about when to place and how to make it work once a person has been placed.

For more information, read A Caregiver's Guide to Lewy Body Dementia, available on LBDtools.com