11

Facilities

At some point, there will probably come a time when you are no longer able to act as caregiver. This might be because you can no longer physically, psychologically, or emotionally handle the duties, or because your care recipient has deteriorated to a point where only institutional care will do, or a combination of factors. This is a painful decision, which I’ve already gone over, but once it has been made, you have to move on and figure out how best to integrate yourself with the facility.

You might assume that you will be going to this facility as often as possible. But in cases where your loved one has forgotten about you, your visits may only cause him or her a lot of agitation. In some instances, it is a good idea for the caregiver to take a break from visiting their loved one, just so that he or she can get settled in. What is harder to deal with is when your loved one lets you know that he or she doesn’t want to be there and makes a scene when you prepare to leave. If you’re an experienced caregiver, you know that while you’re together you just have to be as warm and comforting as possible, and then when it’s time to go, don’t make a fuss that will cause more agitation, but just leave quickly, hoping that, given your loved one’s lack of short-term memory, your disappearance won’t have a lasting effect.

One thing you must be careful about during your visits is referential conversations. Your loved one may not appear to understand what you are saying, but when dealing with people with Alzheimer’s, the word “understand” may have different meanings. Even if it doesn’t seem that he or she can grasp words, grasping the significance of what you are saying might still be possible. So, if you need to talk to a nurse or doctor about your loved one, have that conversation outside of their hearing.

Some of these communications with the staff are not going to be pleasant. It is doubtful that any facility can provide all of the personal care that you gave, but, nevertheless, there is going to be a minimum level of care that you want your loved one to receive, and if you feel that he or she isn’t getting that, you may become upset. You have to recognize that part of your reaction is going to be fueled by any guilt you may feel for having sent your loved one out of your care. If you’ve done your homework and placed your loved one in a facility with a good reputation, then to some extent you have to back off. On the other hand, if you see something that is clearly a problem, say, your loved one has developed a bedsore, then you definitely need to speak up. (Examining your loved one for bedsores should definitely be part of your routine, if not at every visit, at least with some regularity.) But since you are not there most of the time, and since your loved one probably can’t communicate very well, if at all, you also don’t want to create a situation where staff members might take out their negative feelings toward you on your loved one.

This is a situation where it might be good to find an ally so that you can play good cop/bad cop. Let’s say you are the one who goes to the facility regularly. You’ve tried to nicely point out to the staff that something needs to be corrected, but it’s not being done. Rather than making a fuss yourself, you could ask another relative or friend to pay your loved one a visit, maybe even at a time when you’re not there at all, and let that person take a more adamant stand. Hopefully, they can initiate action, and you won’t have spoiled your relations with the staff.

Those relations are important since you can’t be there most of the time. You need to have good communication, because if there is some sort of problem, you want to be contacted right away. You want the people there to bend over backward to help your loved one. That means you want to be on friendly terms with the staff. Bringing gifts, and perhaps tips, might help. (You might not be permitted to give individual cash gifts to any one staff member, but many institutions have a fund, for the holiday party, for example, and so you can contribute to that.) But at the very least, you want to be courteous and keep all communication civil. Losing your temper is probably only going to have negative consequences.

If you have any doubts about the quality of care your loved one is getting, I suggest that you do some research on what other options are available. That doesn’t mean that you will definitely make a change, but at least you’ll be armed with the information you need in case that step is needed. If you discover that there really is no better place—and that decision might be based on a number of factors, including proximity, cost, and the quality of care—then you’ll just have to put in more effort and perhaps more money to see what you can do to raise the level of care for your loved one. For example, you might be able to employ some private-duty care for a loved one. I know of a 92-year-old man without a family, whose mind is fine, but who is lonely and loves it when a private-duty massage therapist comes in and puts cream on his skin, which is very dry.

I’m all for fighting battles, but only if you are sure that either you can win the battle or bear the cost of losing it. Even if your loved one is not in your actual care, you still bear the primary responsibility for him or her, so you have to pick and choose your battles.

In a facility that houses people with Alzheimer’s, you have to watch out not only for the staff but for other patients too. Given that so many people with Alzheimer’s can show signs of rage or violence, you have to make certain that your loved one is getting adequate protection from the other patients. The level of violence in these facilities is rising as they fill up with more and more people with Alzheimer’s. Because someone who seems docile may suddenly turn angry, it’s very hard for the staff to anticipate one patient striking another, but certainly when you are there, be vigilant, and if you sense that your loved one might be in danger, speak up.

QUALITY OF CARE

Every caregiver whose loved one is now in a nursing home is concerned about the quality of care that they receive. But so is the facility. The rules and regulations they must follow are strict and ever-changing. The detail that goes into the rules about bedsores, for example, is mind-boggling. Care for bedsores is not paid for by government funding, because hospitals are not permitted to let them develop in the first place. This same set of rules may soon apply to nursing homes. When the rules become more stringent, the cost of care goes up. Thus, everyone is caught in a Catch-22 of sorts, because as the elderly population grows, government funds have to be stretched more and more, and, at some point, we’re going to reach a breaking point. But families are also financially stretched to the limit by a disease that requires so much care for such a long time.

Studies have shown that nursing homes tend to use drugs to keep their charges calm in ways that may be dangerous. A government study showed that half of these drugs are being administered when they are not appropriate. You have to be vigilant about which drugs your loved one is receiving and when, then checking with your doctor to make sure that the correct drugs are being used. While you might think that this inappropriate use of drugs is being done just to keep the patients calm so that it’s easier on the staff, it’s been found that some of this misuse is because of financial incentives that pharmaceutical companies are giving to the facilities, in part because Medicare is paying for these drugs. If the administration of a nursing home accepts kickbacks, who knows what else they are doing to increase their profits at the expense of those for whom they are caring.

Thus, you are faced with a conundrum. On the one hand, you understand that the high costs of care mean that nursing homes are going to be very careful when it comes to providing services, but, at the same time, you know that some are willing to make cuts that are dangerous to their residents just to make a profit. All this makes finding the proper attitude to take very difficult. You have to be vigilant, but, at the same time, you can’t have the expectation that a nursing home is going to provide the same level of care that you could when you were taking care of someone you love on a one-on-one basis. The difference in the level of care may not be a negative reflection on the home, but it could be. There is not a limitless pool of funds for taking care of people with Alzheimer’s, and so you have to expect compromises, but to what extent?

Over the years, there have been many nursing home scandals, and there will continue to be owners of nursing homes who are only looking to turn a quick profit. The way in which many for-profit nursing homes are structured can be so complex that it is nearly impossible to discover who actually owns them. Congress has even addressed this issue with the Nursing Home Transparency Act. So, yes, there are some aspects of this industry that are shady.

However, your job isn’t to try to change a system that is far from perfect, but rather to do the best you can to see that your loved one is getting the finest possible care. You may become angry or feel guilty at times, but don’t dwell on such emotions. They won’t really help matters, and they’ll only drain you of much-needed strength. Yes, you must watch over your loved one even when he or she is not under your roof, but when you see things that need to be changed in his or her care, you must use diplomacy to get what is needed, not a sledgehammer. And, if it seems to be impossible to get the right care, rather than wear yourself out, find another facility.

ASSISTED LIVING FACILITY

Assisted Living Facilities (ALF) do not provide the medical supervision of a nursing home. However, Alzheimer’s is not necessarily the type of disease that requires that level of medical care, and having a husband and wife move together into an ALF may provide the assistance one spouse needs to take care of the other.

Some ALFs have a locked ward for those with Alzheimer’s or dementia, but whether that part of the facility is the best option is something to carefully examine. The ALF may be doing this in order to make it seem like their facility is adequate for those with Alzheimer’s in order to keep its residents, and thus maintain the monthly payments they are making, but the care may not be adequate.

The biggest problem with using an ALF when it comes to Alzheimer’s is that the disease will continue to worsen, and there may come a time when the ALF is definitely not appropriate. That would mean making new arrangements, so it might be wise to skip all the technicalities and expenses involved in making such an intermediate step. That’s not to say the ALFs aren’t good for many people, just that they may not be appropriate when Alzheimer’s is in the picture.

There are some facilities, the Hebrew Home in Riverdale, for example, that offer a wide variety of living arrangements. A couple could start off in an ALF, and if one partner needs more attention, he or she could be moved to another part of the facility while the other remains close by, in the ALF. Hopefully, as the population ages, more facilities with multiple options will open up. Those that currently operate tend to cost more than most basic ALFs, and so for most people, the financial side of the equation will probably be a deciding factor. In our next and final chapter, we’ll go into what you need to do in terms of financial and legal planning.