Dementia

A visit to any local nursing home will quickly show you that dementia-related diseases represent most residents' reason for being there. Alzheimer's disease is but one of a number of dementia-related diseases that can set in as the person ages. Indeed, the only way to really tell the difference in these diseases is often an autopsy, and what would be the point in that? Consequently, these diseases are often called Alzheimer's, when, in fact, they may be something similar, but different. The real point is that the results are the same: a sad, debilitating loss of mental capacity over a long period of time finally leading to death.

What follows is practical information gleaned from having been caregivers for several such folks. We are not doctors, but we can share with you some of what we learned about dealing with it. We are not lawyers or accountants, but we can share with you some of what we learned. Our hope is that you will find this information helpful in your own situation. We will divide our discussion by the stage your loved one is in, as regards the need for 24-hour-a-day care, because we believe that what you will need to know will change as you move through time. Then, for good measure, we'll cover some other relevant topics you'll probably need to be prepared for. Our divisions will be:

• I. Not yet, but I see the early stages of what I fear to be dementia.
  
•    Planning for Assistance
  
•    Adult Day Care Facility
  
•    Durable Power of Attorney
  
• II. Imminent
  
• III. Moved In
  
•    Rehabilitation Facilities
  
• IV. Final Stages
  
•    Funeral Arrangements
  
• V. Past--your loved one has passed away.
  
  
• Dental Care
  
• Guardianship
  
• Living Will
  
• Get a Will
  
• Feeding Problems
  
• Your Taxes
  
• Resources
  

I. Not yet, but...

The first thing you have to understand and deal with is that some doctors are all too eager to get to their next customer, ah...patient. Because of this, they may write off something as serious as a TIA (often called a "tiny stroke") as merely Alzheimer's. Some doctors even look upon the elderly as not worth taking their time, so their entire attitude is, "It must be Alzheimer's. Pay the clerk at the desk on the way out. Next." The minute you see this not-worth-my-time attitude in any doctor, stop the session and leave to look for a doctor with more than his/her finances in mind, one who takes his Hippocratic Oath seriously.
Our suggestion is that you look for a doctor who specializes in geriatric-care and take your loved one to that doctor to discuss what's going on. The geriatric-care specialist will know that there are hormonal and other problems that could be what is affecting your loved one--if you're lucky, this will be the case and subsequent treatment with medications can control the problem without further ado.

Let's say you were not so lucky and the doctor tells you that what you're seeing is probably the first signs of senility brought on by age. As of this writing, there are a few drugs that the doctor may offer to try. Before you agree to this, ask the doctor to let you read the section on contraindications and the section on possible negative side effects. Discuss these carefully with the doctor and setup a plan to be sure that your loved one is monitored carefully as some of these drugs are new, almost experimental, and have the potential to cause very serious, even fatal, side effects if they are not monitored carefully. Be sure to let your loved one be part of the decision process. You may want to consider the number of people who were actually helped by the drug during FDA studies--you may find that the likelihood of severe troubles outweighs the chances of a good outcome and decide not to try the drug. In other words, do your homework!

You should understand that nursing home care, normal medications, and a few daily-living costs can easily amount to $50K/year or more. In some areas, it can be much more. And, the prices increase all the time. So, if there are financial resources to protect, here's a first thought for you. If there has not yet been a medical diagnosis of dementia, and your loved one is still acting pretty normal, is able to answer short-term memory questions and talk coherently, you should consider the immediate purchase of a Long-Term-Care Insurance policy. Let's take a quick example: if the LTC insurance is going to cost you $7,200/year, that is a lot of money. But, if you pay premiums for 7 years before you need it and then your loved one is forced into a nursing home, they will average staying there for about 4 years (and may well stay there for as long as 7 years.) You will have invested about one year's worth--at today's prices--to avoid paying four years worth--probably at higher prices than what they are today. Speaking of prices, check out your current average care facility's price at www.MatureMarketInstitute.com -- look for "Quick Facts"

If there are no financial resources needing protection, or you really can't afford to pay for the care your loved one will need, you'll need to look forward to Medicaid--a state/federal program designed to help those who are indigent pay for such expenses. The keyword here is "indigent." Medicaid will not kick in until your loved one has gone through what is appropriately called "spend-down," meaning that they have spent down to the point where they have no financial resources left. In order to get Medicaid money for your loved one, you will have to demonstrate that there are no financial resources left. If the person's spouse is still alive, they will usually be able to stay in their home, keep their automobile, and retain their Social Security income as living expense, but this is all subject to change--usually you can expect the government to make it more restrictive as time goes by--so you must hope for the best, but prepare for the worst.

As an aside, do not confuse Medicaid and Medicare. Medicare pays hospital and medical, meaning doctors, expenses. It will pay for 21 days of rehabilitation after certain medical events, e.g., a broken hip and its subsequent surgery. After that, Medicare stops. Period. Think for a minute, how many times have you noticed that someone is moved to "rehab" for about 3 weeks before having to go home or to a nursing home. Guess why. Did they really need 3 weeks of rehab? Did they need more than 3 weeks? Well, whatever the need, Medicare stops paying after 3 weeks, so you're outa there! Medicaid does pay for extended-stay care, but, again, you must be indigent.

These steps will be your starting point:

• Begin by identifying all real estate, stocks, bonds, CD's, savings accounts, checking accounts, and any other valuables your loved one has an interest in. For example, if their name is on the deed, they have an interest in the property. If their name is on the bank account, stock certificates, CD's, etc., they have an interest in it.

• Now, look at the situation you're facing. If you believe that your loved one can remain in a normal living situation for several years yet, immediately begin making arrangements to remove their "interest" from the resources you have identified. Keep careful records on when such arrangements were performed. The use of a lawyer who deals with Medicaid law is a necessity here, because if the government can show that you took steps to defraud the government, e.g., you had the person give property away just to avoid its inclusion in spend-down, you can go to jail as well as face heavy fines. Still there are any number of perfectly legal actions that will help protect some or all of certain financial resources. And should time be on your family's side, you may be able to protect most or even all of the financial resources at hand. Remember, you are in a race against the dementia's progress and you cannot be certain of what that speed will be--act now!

• If you feel that Medicaid involvement is likely or unavoidable, start now to collect and save every scrap of paper that exists concerning the financial resources your loved one has or has recently had any interest in. You will be asked, for example, to present checking account statements for the last several years. If you can't produce such documentation, you will face a real hassle to try to come up with it. It is far easier to throw it into a box that you can search through later, than to have to go to the bank and pay them to reproduce the records--even if they can actually do it, which may prove problematic in itself.

  At this point in time, you can may still have your loved one sign a "durable power of attorney." This is a document giving you (or someone else) the ability to speak for your loved one when they are incapacitated so that, legally, what you say is just as if he/she said it. It is impossible to stress how important such a document will be in the future as the disease progresses. Talk to a lawyer immediately and have a document drawn up that will give you (or someone else as appropriate) legal as well as medical durable power of attorney. Also discuss the need for a will and a living will because now is the time for all 3 documents.

  Most families find that they can assuage their loved one's angst over signing such documents by have two or three drawn up and signed at once. That removes the feeling of saying, "you're going to lose your mind soon, so let's get ready for it" and says, "This is something we all need to do so we're just taking care of it."

  Take your loved one to the lawyer's office and have witnesses that the person had the document(s) explained to them, showed understanding of the document(s)' significance, and signed the document(s) under no duress. These latter qualifications are more important if you have family members who will contest your moves for any reasons. Without such document(s), you will have difficulties in dealing not only with finances, but also with Medicaid, hospitals, and nursing homes as time goes by.

  Back to top of page

OK, we've said about all there is to say about that, so let's move to what we've chosen to call "Planning for Assistance." It is common for people to want to care for their loved one themselves, especially in the early stages when such care is relatively easy. This satisfies a deep-seated human need to protect those we love. It is the norm. And, in some cases, it is clearly the best thing for the person with dementia. However, in many cases it is not the best thing for them or it is not possible at all. In almost all cases, you will need help at one time or another...please read on before you say, "Not me--never!"

If you have never dealt with a person suffering from dementia, you have a steep learning curve before you. It stretches across months and turns into years and it changes as the disease progresses. One of the first measures used to ascertain where a person is, is to question whether they can complete certain Activities of Daily Living (ADL's). These include such things as preparing meals and feeding themselves, dressing themselves, bathing themselves, toileting themselves, etc. The list will vary, but it will be about the same, too. For certain things, an inability to perform 2 ADL's will qualify you for help at a given level, while other things will be 3 or 4 ADL's. One of the first and best things you will probably be able to look to for help is a local home-healthcare agency. Even in the early stages of dementia, you will want to discuss the possibility of using a home-healthcare agency with the doctor. In some cases, this care may be provided for free or nearly free once your loved one can no longer bathe and dress themselves. The help of an outsider who is used to dealing with this can be a Godsend.

Another thing to know about during the early stages is the adult-day-care facility. These facilities can be used to keep a loved one who is suffering from dementia in the home longer. Essentially, these are small facilities where you drop off the patient in the morning on your way to work and pick them up on your way home. Rates and rules vary, but they can be life savers, even if you are using a sitter in the home since they can usually provide you with "emergency" care. Also, they can provide you with what is comonly called respite care for a day when you just really need to take care of errands or other business.

Another level of care during the early stages involves moving your loved one into what is called "assisted living." This is NOT a nursing home environment. Assisted living facilities are normally extremely nice places where, in essence, you rent an unfurnished apartment complete with three meals a day and someone who can be sure the residents take their medications. Assisted living facilities vary widely in cost, quality, and services provided, but they do not accept people who need round-the-clock skilled nursing and who cannot at least pretty much take care of themselves--unless they have special dementia (or other special-care units.) If, as may be the case, it not possible to have your loved one live at home or with a child, the assisted living facility may be what you need, especially during the early stages. Be aware, too, that some of these facilities have "dementia" units and/or skilled-care (nursing home) units attached to them, but most do not.

So, at this point in time, and as time goes by, you must reevaluate the progress of the dementia and do your best to keep your loved one looked after. If you are fortunate enough to be in a position to do this on a continual basis, that is great. But you MUST be sure that it is done almost daily. We don't want to sound too grim about this, but some of the more common behavioral problems that can be really dangerous can force you to look for continuous coverage if/when they manifest themselves. Examples of this are such things a forgetting to take medications or forgetting that they have already taken them and retaking them--perhaps two or three or more times within just a few minutes. Turning the oven or stove top on high and forgetting all about it. Forgetting how to get home from the store just down the street and, possibly, turning up at the local police precinct. And, of course, going out in public with little or no clothing will get you a phone call in a hurry, as will violent behavior. Remember, you must prepare for the worst, even though you hope for the best. You cannot be sure how the person will act as the disease progresses because at some point they will no longer be themselves.

Another common problem you may begin to see, even early on, is called "day-timing." The person wants to go to bed "with the chickens"--say, 6:00 P.M.--even though the sun is still shining. Then, at about 2:00 A.M., having had a good 8 hours of sleep, they are up and ready to go. In some cases, they may just keep everyone else in the house awake. In other cases, they may forget to take a coat and go for a little walk in freezing weather: then they may forget how to get home.

Great! Right? But you say you're not seeing those kinds of behaviors yet? Good. Wonderful. But begin now talking to others who are looking after more advanced cases. Ask them if they have made use of any local home-health agencies and how they liked the service they got. Would they recommend a certain agency? Make it a point to visit a local assisted living facility or two that might be near enough to your home should you suddenly find that you need them. Have a plan just in case things suddenly get worse, because no matter how much we may hate to admit it, neither you nor your loved one can control when that might happen. If you don't need the plan, count your blessings.

We've already mentioned violent behavior and what the police may see as "exhibitionist" behavior. (It's because the person probably just forgot to dress or even that going out without clothing is not acceptable behavior.) If your loved one turns violent or goes out without clothing, and they may, you may find yourself talking to the local police. You may even see them take your loved one away from you. This can happen "out of the clear blue sky." Talk to the police and ask them, ever so nicely, to take the "patient" (use the word to help imply a need for medical help rather than incarceration as a criminal) to a psych-ward rather than to jail--preferably a psych ward with geriatric and/or dementia care. As bad as this alternative is--and it will be bad-- 1) it beats jail and 2) the doctors there may actually be able to help your loved one so this won't be a repeated deal that winds them up in such a place for good and for all. The latter is a distinct possibility and you must be aware of that. Be prepared for an experience you will want to forget as soon as possible.

No such discussion would be appropriate without mentioning driving. Of course, someone who cannot remember how to get home from the local supermarket should not be driving. Worse, they may suddenly fail to remember what a red light or a stop sign means or even how to stop the car. There are documented cases where this has happened. Many times, you will be surprised to see the person quit driving on their own. They will tell you that they realize they don't need to be driving anymore and that they have quit. This is the ideal, but it will be more likely to stick if you or someone else is able to get them out and take them places, a lot. At this point, it might be a good idea to "fix" the car so that it can't be started, anyway.One the other hand, you may not be so lucky. "I'll quit driving when they pry the keys from my cold, dead, hands." is an attitude you may encounter. Should this be the case, you may actually have to enlist the aid of your local police department to get those keys away from him/her and it will not be a pleasant thing, but it is vital that the car be completely out of reach when the smoke settles. If you have a family lawyer, you may want to involve him/her in this kind of thing before talking to the police.

Finally, if you or your loved one has a level-headed, educated pastor, talk to them about what's going on, about your feelings and your fears. Draw upon their training and position for help in dealing with the unexpected situations that come up, as well as for spiritual help and guidance as you go through these trying times. Don't expect the pastor to be a mind reader...talk to them. Ask for help from them and from friends at your church. You may be happily surprised and both of you need a support group of friends.

At this stage, your loved one is exhibiting one or more behaviors that have you really worried about their safety and well being. Additionally, they are unable to perform certain key Activities of Daily Living (ADL's); perhaps they cannot dress themselves, or they cannot bathe themselves. You are fast reaching the point where you know that round-the-clock care is absolutely necessary and hard decisions can no longer be put off. Read Section I above: except for protecting financial resources--probably too late for that now--it still applies.

Now, depending upon your individual situation, you will realize that you have a limited number of options:

• the family can look after him/her
• you can hire sitters
• the family, using hired sitters, can look after him/her
• you can move him/her into an assisted living

If the family is to look after him/her, it will usually wind up falling on the shoulders of one or two people to do this. Marriages have failed under these pressures more than once. Children have run away to escape the pressures. If you agree to be the person to look after him/her, be sure you commit to try it and then evaluate how it is with all concerned. Moving mother or father in with your family may seem like a good idea, but in practice it may not work. Realize this and be prepared to give ground if you have to.

A really good sitter can be a life saver. She (usually) will become a member of the family, someone who will always have a place in our heart and family. A really bad sitter will also always be remembered, though not so fondly. And you must accept that no matter how well-intentioned or how good your sitter is, they won't be able to be there, on time, every day. (Check out the paragraph above about adult day care facilities). Expect an occasional sick day, or personal day when they just have to do something else. Murphy's law will be in play, so on the morning when you just have to be at work on time, that's exactly the morning when she will call in and say her child is sick and she has to stay home with him/her. If you were in their position, you would be the same way, but how many of these you will accept before you look for someone else will, of course, be measured based upon supply and demand, work performance, etc. As a rule, you will be looking on a regular basis, so be prepared for that and if you do better, wonderful. When you use a sitter,

• always be sure the sitter has your phone number and all relevant emergency numbers readily on hand so they know who to call in an emergency if they can't get you
• remove temptation--valuables--from the premises
• pick random times and walk in unannounced--just to see what's going on
• talk to your accountant about IRS rules so you don't get into taxing troubles (pun intended)
• have clear, written rules about what duties the sitter will and will not perform each day, i.e., bath, dressing, cooking, feeding, washing clothes, handling of trips to the doctor, etc. (Try to avoid the "but I thought you said" argument situation.)
• have clear, written rules about what happens if the sitter can't get there--who they notify, pay policy (usually no work, no pay), etc.
• have clear, written rules about what happens if you have to ask the sitter to stay a few minutes past their normal time, including pay policy (usually you should pay them extra for this--1.5 times their normal pay is reasonable).
• have clear, written rules about holidays--what days are holidays, will the sitter work any holidays, what will the pay arrangements be if they do, etc.

Assisted living is expensive, but it may prove to be the best alternative if you cannot locate a good, reliable sitter and the family cannot be there around-the-clock every day.

Selecting a good facility is your first challenge. Begin by looking at facilities that are near your home and/or place of employment: assuming you will be the primary person to look after your loved one, the ideal would be a point in the middle of your afternoon commute. Hopefully, you have been talking to some other folks about the facilities near your home and you can use what they've been telling you to narrow your search. Otherwise, check out several facilities, even if they are not ideally located. Before you sign, be sure to visit the facility at both lunch and dinner times and on a weekend. A few excellent indications of how the facility will be for your loved one:

• whether the facility is maintained properly--if you smell urine or worse once, OK, "accidents" happen in these places. If you smell it every time you're there, keep looking, because something is wrong here.
• whether the staff speaks to the residents as if they are human beings deserving of respect or not. Just sit in the lunch room and listen as they get residents into the area for a meal. After you visit a couple of them, you will see differences and these will give you clues about how your loved one will be treated when you aren't around.
• whether the quality and quantity of food given to residents is consistent, especially on weekends at dinnertime. Will he/she be happy with this kind and quantity of food, or will they hate it? Weight loss is a huge problem with dementia patients, and if they hate the food, this will exacerbate that problem, plus it will make them even more unhappy with being at the facility.
• whether the staff is cut to an absolute minimum on the weekends--the more help your loved one needs, the worse the impact of insufficient staffing will be on him/her.
• whether the residents are left in their room all the time or are encouraged to come out into common areas and socialize. Consider that socialization may help your loved one keep from sliding into oblivion, even if they don't seem to like it. In many cases, however, you can easily see that being with people lifts their spirit, i.e., they like it. Weigh this with what you see at the facilities you are considering.

Be sure that you wind up with a written understanding of what services will and will not be provided. For example:

• If you want to be certain that the nursing staff at the facility will dispense medications, even if you're out of town, that should be down in writing. There may or may not be a charge for this, but you will almost always have to pay for especially-packaged medications.
• Be careful about laundry. There is usually an additional charge if the assisted living facility does the laundry, but if you decline this service, it means someone must keep up with it whether you are out of town or not.
• Be sure you know what happens if you have to pull your loved one out of the facility for a few days, for example, for a brief hospital stay. They will not be there to eat, nor to take the staff's time, so you may get some kind of break for a given number of days. On the other hand, some facilities don't want the room standing empty and after some number of days, you may find that you have to give it up. In some areas where there is a shortage of rooms, this can be a real problem.

As you move your loved one's "stuff" into their new quarters, consider these things:

• remember that anything of value probably will disappear. Rings and other expensive jewelry should not go to the facility.
• You want to make the room feel like home to him/her, so be sure to include a few family pictures, favorite chair(s), etc. Try to find something that will hang over the room for and identify the room as theirs--remember they probably can't remember which room is theirs without help. (Some facilities have a framed box by each door for this purpose.)
• If your loved one has eyeglasses, try to label them with a fine-tipped Sharpie or similar permanent marker, and be certain they are on the inventory you give the facility...they probably will get lost.
• If your loved one has expensive hearing aids, all we can say is good luck...they probably will get lost one way or another and the odds of finding them are not good.
• Label all the clothing and shoes so that the person's name shows. You will, from time to time, be surprised at what disappears and is never seen again. From tennis shoes to sweaters, it seems its all fair game. With some of it, the problem is that they forget where they left it. With some of it, it probably gets thrown away by mistake. With some of it, who knows who took it or why. But if the name is showing, your odds of keeping it increase. (The best thing we've found or seen for clothing is fabric paint, found with the sewing stuff at Wal-Mart. Sharpies are indispensable for shoes, etc.)

Once you're moved in, always make it a practice to drop in at odd times both day and night so that you can know what's going on. Your loved one will often be treated better if the staff knows there's someone always around and things are being looked after. Even if you can't or don't want to sit with him/her for a few minutes, just run in, check the room, be seen by the staff and leave. The impact is still there--you're on top of things and if they're not doing right, you'll know and complain about them.

Try to make friends with some other residents' families. Make a deal with them that if they see anything you need to know about, they have your phone number and can feel confident that you want to know about it. You, in turn, will watch out for their loved one and let them know if you see anything they need to check on. This is usually easy to do and could, literally, be a life saver.

III. Moved In

If you're here, your loved one is probably already moved into some kind of facility because they require round-the-clock care at some level.

Let's begin by assuming you are at the Assisted Living point. If your loved one is in an assisted living facility, it means you need to be planning ahead for that time when you need one of three things:

• a move (possibly unplanned and unwanted) to a different assisted living facility
• an unplanned 3-week stay in a rehabilitation facility (see Section I about Medicare coverage)
• a move, probably unplanned and unwanted, to a skilled-nursing (nursing home) facility

The first thing you want to do is read section II just above here. It is not at all uncommon for a resident to move from one Assisted Living facility to another. Lots of things bring this on and not all of them are pleasant, planned, or wanted. A few common examples of this are:

• The facility you're in declines or raises prices out of reason with relation to others in the area.
• New facilities open and are much closer, much more convenient, much nicer, etc.
• Two or three good friends may be moved into a different facility nearby and you feel that will help make life better for them all.
• The facility you're in announces it is closing.
• The state closes the facility.
• Your loved one falls and breaks a hip.
• Your loved one is evaluated as having declined to a point where the facility cannot deal with them.
• Your loved one is accused of violence. (Please, take a moment now and read the paragraph on violent behavior in Section I, above.)

Furthermore, looking for a skilled-nursing facility (see below) is very much like looking for an assisted living facility. The main point here is that even though you're moved in and about as content with the situation as you can be, you cannot depend upon things staying constant for any length of time because they probably will not. Murphy's Law will come into play, too, so you can depend upon things changing unexpectedly at the worst possible moment. Since this is true, you need to have three moving plans and you need to keep them updated at least annually.

Since Section II above discusses finding an assisted living facility, we will assume that at this point your existing medical-doctor setup includes a good hospital and we'll go straight to the prospects of finding a suitable rehabilitation facility. Where would you tell them to take your loved one for rehab? You can begin your search by asking the doctor's office which ones are in the area and which ones they usually recommend. (Hopefully, you have more than one to choose from. If not, you're stuck.)

Rehab facilities are at once exactly the same and yet very different than assisted living or skilled-nursing facilities. They plan their patients' days so that they get the necessary rehabilitation sessions. Consequently, they usually don't accommodate visitors as well as either of the above. However, in all cases, rehab facilities are, in fact, skilled-nursing facilities where your loved one will spend 24 hours per day. Since you will only be looking at a 21 day stay, you may be willing to sacrifice some patient care quality to get a better, or more convenient, rehab facility--but think hard about that decision before you make it. Three weeks is not too long a time to drive a few extra miles, but this is probably a time when your loved one just got out of the hospital and needs the highest quality of round-the-clock care they have ever needed or, perhaps, ever will need. This means you should know ahead of time whether the 24-hour care, including the rehabilitation, will be of that highest quality and try to get the best that is available. Once you have had recommendations about the best available rehab facilities, go and look at the facilities exactly as if it were a nursing home and select based upon that criterion rather than convenience of location.

So, let's talk about looking for a skilled-nursing facility. Remember Medicaid? Well, here's a first problem if you're "on Medicaid:" not all skilled-nursing facilities have "Medicaid beds." Here's a second problem: not all skilled-nursing facilities will accept dementia patients. Why don't they all have Medicaid beds? Rest assured it comes down to money: there just is not as much money in Medicaid Beds and facilities that have them will (usually) not actually be as nice, based on staffing, food quality, and lots of little things, as those that do not. Facilities for dementia patients require special facilities and special licensing and not all skilled-nursing (or assisted living) facilities can accommodate these, even if they wanted to. If you are "on Medicaid" begin by calling the nursing homes in your target area and asking if they have any available Medicaid beds and/or a dementia unit. If you are not "on Medicaid" begin by calling the nursing homes and asking about availability and pricing.

Now it is time to visit the hot prospects. Your main difference between looking for an assisted living facility (see Section II above) and a nursing home revolves around the fact that your loved one now needs more staff--skilled nursing and much more round-the-clock care. Make a visit around lunch time on a weekday to get a baseline view of how many staff are actually needed at the facility. Make the same visit at about 6:00 P.M. on a weekday and then at about 6:00 P.M. on a Saturday. Check out the staffing. Check out the food--quantity and quality. Watch for call-lights that are being ignored. Soon you will probably identify a facility that stands out as compared to the others--either as better or worse.

If you're making a plan, you're pretty much set for the worst. If you're actually looking to move in to a skilled-nursing facility, you'll need to cover all the same things as those discussed in Section II above for assisted living facilities. You probably will not want to move in nearly as much stuff as you used at the assisted living facility.

You may also find that you've moved to a new situation where it may not be easy to take your loved one out to the doctor easily. Most nursing homes have arrangements for a doctor to visit the facility on a regular basis. Caution is in order here and a basic suggestion is to meet the doctor and do a little due diligence before you make a decision about using him/her. Be sure to ask questions about what procedures are in place should your loved one need to go to the hospital. Make it known to the facility's people which hospital you will want used should the need arise--you may be called after they have already shipped your loved out via ambulance.

Please, do not neglect to involve your loved one's minister and/or your own minister in what's going on. Talk about it to your friends at church. There will be times when you will need the support that these people can provide, so keep them involved and don't be afraid to say, "I need your help." When you have no where else to turn and you feel completely overwhelmed, prayer and the presence of these people in your life will be a source of help and strength that you will be extremely thankful for. And may we suggest Psalm 23 for those times, too.

IV. Final Stages

If you're reading here, chances are good that the medical staff and doctors are telling you that the end is growing near. They are probably, but not necessarily, correct. If they believe death will occur within the next few months, they will probably recommend that hospice be brought in. This is, in general, a good thing, but ask questions about what services the hospice group will provide and what will happen should the situation continue for more than six months--in some areas, this can cause problems, though most groups will work to overcome them, they may not be able to do so.

Talk to the hospice and/or the nursing home folks. If there is a living will, make sure they know that. Make the family's wishes about extraordinary measures known to them and be certain the doctor(s) involved all know and accept the family's wishes. If a Do-Not-Resuscitate order is supposed to be in effect, be sure the hospice and/or nursing home folks have it plainly posted on their records and are familiar with it.

Please, read on before you bail on this. It may seem morbid to some, but if you have not already done so, this is the time to make funeral arrangements. In fact, if you haven't already done so, you should go to the local funeral home and pre-pay for the funeral now. Why? Because you may save literally hundreds of dollars by doing so. We saved eight hundred dollars on a pre-arranged funeral as compared to one just a few months earlier that was purchased after the person's death...much to the consternation of certain people at the funeral home. Unbelievable you think? You see, the idea of a pre-paid funeral is that they will be able to invest, and draw interest on, the money for a long period of time. Hence, as an inducement to convince you to pre-pay, they discount the amount you pay considerably. Furthermore, you are not as grief-stricken and upset as you would be if you waited until death had occurred before dealing with the problem. Since you are reasonably certain that death is near--say within the next year, pre-paying gets you the discount without allowing time for interest to accumulate...you win, they lose. You are also more likely to act in a rational manner and more closely evaluate the proposed extra-cost "services" they will offer you, thus avoiding waste that might otherwise enter into the equation. It may be distasteful, but you cannot avoid doing it and now is the time.

Please, be patient for just a few more words on this subject. Most areas now require the use of a concrete "vault," but not all do. While the family will decide upon a casket based on their own preferences, you need to understand the purpose of the vault--basically it is a concrete liner that will surround the casket and prevent a cave-in of the grave in years to come. The vault is usually a fairly minor expense in the grand scheme of things and we would recommend that you spring for it. If you don't it can be quite traumatic for certain family members when, just a few years or even months down the road, the grave does cave in and you have to have the person's remains dug up and re-buried--expensive and not a pretty thing. 'Nuff said about that.

OK, this may sound silly, but tell the nursing home which funeral home your arrangements are with so that you don't mess up when the time comes. We've seen it happen when grief and the confusion it brings are in play.

If you've followed our recommendations (above), you have at least one minister available to perform the funeral. If you do not, now is the time to line one up. Call the minister, tell him/her the situation, and ask to make an appointment to discuss the ceremony at a mutually-convenient time. Try to involve any and all family members. Let the minister direct the meeting and just try to get things pre-set while things are as calm as they will be until it's all over. In general, the minister will want a few personal comments about the loved one from you all. A favorite scripture or two will be helpful and a favorite hymn or two will help. If this seems morbid, remember that all of this will solidify far more easily given a couple of weeks to think and talk about than it would in the 48 hours prior to burial. And it really won't change if it isn't used for several months, but what a relief it will be to have it all set when it is needed.

Again, and we just cannot stress this enough, involve your church friends in your situation...talk to them, lean on them. Take time to pray.

V. Past

This is a time of grief and of healing. Assuming you had hospice, their chaplain will be around seeking to be of help if needed. Your own minister should be making some visits to check on you and your friends at church, if they are aware of what's going on, will make themselves available to you. Grief is, unfortunately, an individual thing that can vary depending on circumstances. There is no way to predict the magnitude or duration of its most extreme effects on you. Whatever they may be, prayer, family, and friends will be vital in helping you.

If you have been held close to home and close to the nursing home for some length of time, we would suggest a little vacation trip--even just a weekender to a nearby city where you just take some time off and try to relax can be a great help.

As soon as you or someone in your family feels up to it, call any life insurance companies that you are going to have to deal with and ask them to send you a claim-submission form. If necessary, contact the bank and have any automatic payments, i.e., Medicare-Plus insurance payments, stopped. Make a listing of who these payments went to--each of them will need a call or letter to tell them that the person has passed away and that they should cancel the accounts in question rather than continue to expect payments.

After a couple of weeks pass you will need to be sure you receive a copy of the death certificate from your county health department. These will be vital and you may well have to purchase extra copies to meet your needs. Social Security must be notified that the person has passed away and will probably ask for a copy of the death certificate. If veterans' benefits were being paid to the person, they must be notified and they will also probably ask for a copy. Any life insurance policies will require a copy of the death certificate. Any safety deposit boxes will need to be emptied, but this should only be done in the presence of all who might inherit the contents. If there is any chance of disputes over this, a disinterested party should make an inventory listing of the contents of the box so there can be no question about what was actually in the box. The same advice applies to any other situation(s) where you could not otherwise prove what material possessions were actually involved.

If you believe the estate will be large enough to be hit by inheritance taxes, if it will require probate, if someone in the family will cause problems, or if there is no will but a fair amount of resources involved, immediately find a lawyer to help you get through the ordeal--sooner is better than later.

Dental Care

If your loved one still has their teeth, old age and dementia can bring a new problem. Often the person comes to a point where they will not open their mouth and cooperate with the dentist so that cleaning and/or restorative care can be provided. At this point, you will face the most popular offer the dentists seem all too anxious to make..."we can just pull them all out." Fortunately, in the Birmingham, Alabama, area, we are blessed with the UAB School of Dentistry. There, and so far as we know at this time, this is the only facility in the area so equipped, you can find a setup where a dental "operating room" equipped so that both an anesthesiologist and a dentist can come together and work to meet your loved one's needs.

Let's explore their first offering. Remember that weight-loss because of a lack of appetite is one major problem that almost all elderly folks face, and that swallowing problems are also frequent in these circumstances. If your loved one has all their teeth removed, they will be faced with eating something akin to mush (think ba