Caring For Someone Who Has Alzheimer's Disease
1 AnswerAt the early stage of the disease, problems in toileting and hygiene tend to be relatively mild. Here the word “prompting” will become very important to you. You may need to prompt your loved one to change clothes, to take a bath and so on. At this stage the person generally still has full control of bodily functions such as getting to the bathroom on time. But this will become an area of much greater concern in the middle and late stages of the disease.
1 AnswerYou will find that joining an Alzheimer’s caregiver support group will be a real life-saver for you. You will first of all see that you are not alone in struggling with some of these problems. Second, you will have an opportunity to learn from other caregivers what they have found that worked with their loved ones. You will also enjoy the camaraderie of being with people who are in the same boat as you are. How do you find a caregiver group? The doctor or clinic to whom you are taking your loved one is likely to know of such a group. If not, you can call your local Area Agency on Aging, or your local chapter of the Alzheimer’s Association or your local hospital to find out when and where such groups are conducted. A caregiver group usually consists of a group facilitator who may be a memory specialist, social worker, nurse or doctor, or even a lay leader, plus a dozen or more people who are dealing with various stages of caregiving for their loved one. Generally there is absolutely no cost to attend. Sometimes a support group even has an activity program in which your loved one can participate while you attend the group session. Or you can learn about caregiver groups by going on the internet, typing in “Alzheimer’s support group”, followed by the name of your community, and you’re likely to find a listing there. Later on, when you yourself have become an experienced caregiver, and have discovered some things that work really well with your patient, you will be able to pass on these “secrets” to other caregivers in the group. You will find that they will be very grateful to you for your advice.
1 AnswerIt turns out that having a similar routine of activities each day works best for persons in the early, and even in the later stages of this disease. What that routine will consist of depends on what routines the person has followed before they developed the disease. You might think that routines would become boring, but they can actually be quite comfortable.
Routines around meal times are probably the simplest and most reliable schedule to establish. After that, try to ask your loved one to do a task that he or she can still easily perform, and then thank them for doing that task. Simple? Right.
1 AnswerIt may be useful to think of caregiving as a kind of job. You have to take it seriously, you have to plan and you have to have a schedule.
To start with, you need to be a keen observer. Look for what is changed, and then decide if there is something you need to do about it. Not all changes you may see will require a specific response.
Changes are likely to happen in four areas:
- Changes in memory: During this phase of the disease you are likely to discover that memory for recent events, recent conversations and updating of events or times, will be the most prominent changes. You may find yourself having to repeat conversations you have had, or you may need to answer the same question more than once. Keeping track of the day of the week and the date, since these require constant updating, may slip fairly easily. You may want to keep the day of the week and the date displayed somewhere prominently in your home to help with orientation. If your loved one does make mistakes, it is important that you respond to them with equanimity, rather than with annoyance.
- Changes in communications: You may observe that your loved one will not finish a sentence, or may get stuck on trying to find a word that simply won’t come out. If you understand enough of the sentence, you don’t need to do anything. If you can guess what word your loved one is trying to say, go ahead and supply the word, so that the conversation can continue. For example: if your loved is saying: “We have to go to the ... (can’t come up with the name),” go ahead and say “the Williams’s” so that your loved one can complete the sentence. This will be less frustrating than if you are waiting for the right name to emerge.
- Everyday activities: Let us say your spouse starts to mow the lawn or to wash the dishes, but doesn’t finish the job. There is no need to make a big deal out of it. Ask your spouse to please start again on the same or finish the job yourself.
- Changes in mood or behavior: if you notice your loved one becoming blue or irritable, try to initiate a new activity with him or her. Suggest something that you know they usually really like to do, like: “let’s go for a walk, it is such a beautiful day today,” or “let’s have a picnic out in the back yard today.” Or offer a compliment that you can sincerely make, such as “you’re wearing such a nice outfit today,” or “I sure appreciate your helping me put away the dishes today.”
1 AnswerDuring these early stages of the disease, the demands made on the caregiver are relatively modest. Patients are still able to communicate effectively with the caregiver; they are able to perform all the basic as well as the more complex activities of daily living (eating, dressing, grooming, making purchases, using transportation, including driving their own automobile, using the telephone and so on). However, when it comes to short-term memory their performance falls short. They may forget appointments, they may not be able to deliver a message they took over the phone and they may forget to take their prescribed medication. So what is needed on the part of the caregiver is a kind of a hovering presence that allows the patient to do what they can still do, but is ready to step in and provide assistance when it is needed. Put another way, the number of hours you will actually be doing specific things for your loved one will be relatively few. However, your role as a hovering “guardian angel” will be in operation 24/7. Yes, caregiving really is the original or the quintessential 24/7, or 24/7/365 job. Take a deep breath.
1 AnswerIf your loved one is unwilling or unable to admit that change is coming, i.e., if he or she is in denial, the job becomes a lot harder. I have seen quite a few people, particularly people who have been powerful and prominent in their community, reject any admission that something is wrong, and then of course both of you are in real trouble. Your loved one won’t avail himself or herself of the treatment that is needed, and preparation for the future will not take place. Consult with the doctor about how this might best be overcome, or, if you are already attending a caregiver support group, (which we will discuss shortly) ask your peers in the group how they may have overcome a similar problem.
1 AnswerDuring the early stages of Alzheimer's, before problems become more serious, you need to plan while you and your loved one can plan jointly, to prepare for the weeks, months and years ahead. I recommend that you do this with the help of an elder law attorney who is familiar with all the important documents that need to be drawn up before your loved one becomes so disabled that he or she can no longer participate in this process.
Have your loved one give you power of attorney. This will allow your loved one to make decisions for themselves for as long as they are able; that authority will then pass on to you when they are no longer able to do so. You will also want to establish yourself or another trusted member of the family to be appointed as healthcare surrogate, to make needed medical decisions related to Alzheimer’s or other illnesses throughout the remainder of your loved one’s life. This is also an excellent time and probably the last time, to review your loved one’s will, and to amend it, if necessary.
1 AnswerIn the earliest stages of Alzheimer’s, when both you and your loved one are still just trying to figure out what is happening, we cannot even speak of you as “the caregiver.” Assuming the role of caregiver requires a delicate negotiation to establish that someone is in need of care, and that isn’t at all clear early on. You have to be so gentle. Many an individual in the early stages of the disease has blurted out, sometimes with some degree of anger, “I don’t need a caregiver.” And for the most part they are right. At this stage the affected individual can still pretty much do everything they need or want to do: drive a car, make a telephone call, socialize, cook a meal, and dress and groom themselves. In fact, you are only a “caregiver in waiting,” waiting to step in if you are needed, and not otherwise. You haven’t been “commissioned” yet. As it becomes clearer to both of you where help is needed, you can offer that help and then again step back, when it is clear that nothing further is required. This kind of back-and-forth is likely to go on for weeks and months, as the diagnosis is pursued, established and possible treatment is initiated.
1 AnswerAlzheimer’s disease is an extremely variable disease. It can last anywhere from two to twenty-five years. So for how long are you going to have to be a caregiver? While no one can give you a precise answer to that question, it is possible to give you a very good estimate concerning the person you are caring for specifically. This is not done by magic but by good and careful observation on the part of you and your loved one’s doctor. For instance, if the person has only reached the mild or early stages of the disease, then one can judge that the person is pursuing a slow course, and that the entire illness may last anywhere from 15 to 20 years. If on the other hand the person has already reached the severe stages in two to three years from the start of the first symptoms, then he or she may be expected to run the entire course of the illness in as little as four to five years. Most commonly, however, the entire course of the disease can take from seven to ten years, from first symptoms to final outcome. So, with that knowledge you can more adequately prepare yourself mentally and practically for the length of time that you are going to be in the caregiver role.
1 AnswerWhen your loved one has had a complete diagnostic evaluation what are the elements of the diagnosis that you as a caregiver need to know? Here are the questions to which you should receive relatively clear answers:
- Are you definitely dealing with Alzheimer’s disease, yes or no?
- Or are you dealing with Alzheimer’s disease plus something else, such as a mixture of Alzheimer’s and vascular dementia?
- Or are you dealing with something other than Alzheimer’s disease, such as vascular dementia, Lewy-Body dementia or post traumatic or post encephalitic dementia?
- Assuming that you are definitely dealing with Alzheimer’s disease, what will be the rate of progression—slow, intermediate or rapid?
- In addition to memory and intellectual impairment, are you also dealing with behavioral problems? These can be more troublesome than memory problems, and may require separate interventions. You will need to know the answer to all of these questions so that you can make appropriate plans, both for your loved one and for yourself.