In terms of caregiving experience, how would you describe yourself?
New caregiver. The new caregiver has just taken on caregiving responsibilities. Even if you are a few months into caregiving, you will experience the pressures of needing to find out a lot of information fast. You will want to find out more about your care receiver’s condition and make plans to handle his needs. Find help early! there are many services available for both caregivers and the people they take care of. Check with the eldercare locator at www.eldercare.gov to see what’s available in your care receiver’s community. Search the internet for organizations dedicated to your care receiver’s specific disease. Consider joining a support group, either locally or on-line. Taking care of a person with dementia can be extremely stressful. Joining a group of others who are in the trenches with you, taking care of their relatives, can be a great way to get tips and talk to others who understand. You and your family have many adjustments to make. Get all the information and support that you can to help you through this phase.
On-going caregiver. At this stage of caregiving, you’ve been at it for a while. You are already quite familiar with your care receiver’s condition. In the beginning stages, you might have been very concerned about him and worried that you might do something “wrong.” In this stage, however, you have a lot more confidence. On the other hand, you may be starting to burn out. The adrenaline of the beginning stage may now be turning into fatigue. It is important to know your limits and to find help and support through other family members, community services, and support groups. You may think that you have to do everything or feel that you are the only one who can provide adequate care for your care receiver. There is no doubt that you do an excellent job, but you have to take breaks. Dementia is a disease that goes on for years. You have to pace yourself. If you want to be there in the long run for your care receiver, the best way to care for him is to be sure you find ways to care for yourself. The advice of flight attendants is relevant to your situation, too: “if you are travelling with someone who needs assistance, put the oxygen mask on yourself first, then help your companion.” You need to take care of yourself! there is light at the end of the tunnel. It is possible to establish a routine and find pleasure in your caregiving. Without breaks and help, though, it will be much harder to move on to this more pleasant stage of caregiving.
Veteran caregiver. Usually after several years of caregiving, you will have found the balance between your needs, your care receiver’s needs, the needs of your work, and the needs of other family members. This doesn’t mean that caregiving isn’t hard, or that you don’t feel sad or overwhelmed from time to time. It does mean that you have hit your stride, at least until there is a big change. If you have “survived” to this stage, you probably spend less time questioning whether you can handle it all and focus more on finding ways to improve the situation little by little. You have probably found things to laugh about and probably have also found ways to enjoy your care receiver for the things he can do and the moments that reflect the person he still is, despite his disease. Very likely, you have been able to mourn the loss of your old relationship with your care receiver and accept the changes. Having “caught your breath” a little, you can now start thinking about the future for your care receiver and for yourself. Is it practical for you to continue taking care of him until the very end? do you really have the strength for the kinds of care (lifting, bathing, etc.) that could be required as his condition progresses? what if he loses control of his bowels or bladder? this is often when families realize that they may not be able to do everything themselves.
Caregiver in transition. There are times in caregiving when a family determines that the best care for everyone involved is a change to another location. Your own health may be at risk. Or your care receiver’s condition may have changed such that you are no longer able to safely and optimally meet his needs. This change in location could involve a move to a different family member’s house or to a long-term care facility. The move to a facility, whether it is assisted living or a nursing home, is not a failure in caregiving. Nor is a change the end of caregiving. When others take on the primary role, you will likely have more time and energy to give emotionally to your care receiver. This can be a liberating experience and a time when you actually get to enjoy your care receiver more than when you had primary responsibility for the physical tasks. Your new role will probably also focus on being a person who supports the other caregivers (whether they are other family members or professionals at a facility). You may coordinate services, handle finances, work with government programs, etc. You may feel guilty about the change or may even feel fed up and tired out. You may feel very sad about the conditions that have caused this change and the decline that it may represent. You may need time to grieve over these losses and the change in role. Give yourself time and permission to feel all of these feelings. They are all perfectly normal.
Caregiver in mourning. Dementia is a chronic, long-term illness, but it is also generally considered a terminal condition. Your care receiver may not die specifically from the illness causing his dementia, but he will die with the disease. You have probably considered the possibility of his passing and in some ways have probably felt that some part of your care receiver has already died. This is not disloyal. There is an element of truth in it. Your “mourning” could well have happened long before your care receiver actually passes on. Still, the final good-bye does cause grief. This can be a confusing time because of conflicting emotions. You may feel grief, then relief, and finally, guilt. You may be angry with your care receiver due to unresolved issues between you, or towards family members, because you didn’t find them to be very helpful. The best way to help yourself during this stage is to allow your feelings to surface and know that they are completely normal. You may want to seek help in resolving these issues. You may also find that you want to lend your wisdom and experience to help other caregivers. As a result of your caregiving, you have probably grown as a person. Now that your responsibilities are over, it might be helpful to reflect on what you have learned and the good times you spent with your care receiver.
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Thinking about the progression of your care receiver’s illness, where would you say you are now on this continuum?
Before the diagnosis. This is a time when you may be noticing that something seems “not quite right” with your care receiver. She may or may not be noticing the difference herself, but it is starting to affect her life and her day to day interactions. It can be awkward because you may be very aware that something is wrong, but she and perhaps other members of the family don’t want to see it. Sometimes, everyone recognizes there is a problem, but they all hope it will go away. No one wants to acknowledge that your care receiver actually has memory problems. There is often a lot of anxiety and perhaps frustration at this stage. Frequently, family members have differing opinions about what’s wrong and what should be done about it. Typically, though, a problem will eventually be undeniable, and family members will have to make a decision about what to do. Sometimes this happens when the symptoms have appeared fairly recently, but it may also occur after the problems have been apparent for a long time. The best thing to do is to schedule a check up for your care receiver. While you and your care receiver may be scared of the results of going to the doctor, the decision can also bring a sense of relief. A diagnosis can at least end the uncertainty. It can pinpoint the problem and eliminate other possible explanations. And, depending on the problem, the doctor may be able to prescribe medication to slow the progression of the disease.
Time of diagnosis.The process of checking for dementia involves a lot of tests and specialists. It can be a scary time. Families frequently come together during crisis times like these. While the reaffirming of family ties can feel good, getting everyone together can also bring up old tensions and emotions. If the diagnosis is dementia, there are many ways that your care receiver and other family members might respond. Some will likely feel relieved to at least have an explanation for the strange behaviors. Others won’t want to accept it and will come up with all kinds of reasons why the doctor could be wrong. Shock, anger, denial, and grief are all common responses.
Before the family drifts back to “normal life,” it is wise to talk about the diagnosis and what it means in terms of the future. It is important to determine now how your care receiver would like things to be handled and how you as a family are going to share the tasks of caregiving. Caring for a person with dementia is hard work, and it lasts for years! frequently, families avoid talking about these issues. As a result, one person ends up shouldering most, if not all, of the caregiving and eventually burns out. You can prevent this by having a family meeting and dividing up various tasks. Make sure that the person taking primary caregiving responsibility gets to take breaks now and then.
After the diagnosis (sometimes called the “chronic stage”). After the initial shock of the diagnosis has worn off, families tend to want to “return to normal.” Usually this means that one person shoulders most of the caregiving responsibility. While this might be the most convenient way to share the load, it often results in burnout and resentment on the part of the primary caregiver.
If you are the primary caregiver, it is important that you maintain friendships and interests outside of caregiving. This chronic stage of the disease can last for years. It requires establishing a pace that assures the family can keep caring for the “long haul.” During this time, you should get help in as many ways as you can so you can take breaks. Talk to friends, family, and church members. Look into local support programs for caregivers. The eldercare locator at www.eldercare.gov can direct you to helpful organizations in your community.
In hindsight, experienced caregivers often say they wished they had made “time off” and getting help a higher priority. While it may seem difficult to take breaks from caregiving, it is essential if you wish to maintain a high level of caring.
Terminal stage (a few months before death). A person with dementia will most likely die from complications of another condition, such as cancer or heart disease. Still, the dementia will play a significant role in late-in-life care, especially if your care receiver is in the moderate or advanced phases of dementia. The dementia may make it difficult for your care receiver to tell you about pain or other symptoms. As a result, it is important to take your care receiver to her doctor for regular check-ups.
Be aware that as your care receiver approaches the end of her life, her needs may be more than you and other family members are able to handle. Many caregivers have their own health problems and frequently neglect them while caring for their care receiver. Family members may want to look at new ways to support the primary caregiver. You and your family might consider arranging for hospice care, hiring in-home help, or moving your care receiver to an assisted living facility or nursing home.
It can be depressing to recognize that a family member is nearing the end of her life. If she has dementia and has not “been herself” for a long time, it’s not uncommon to also feel relief–for her and for yourself–and then to feel guilty. Know that you aren’t the first one with these feelings. They are very natural emotions. Take advantage of the time that is left to spend pleasant moments talking with your care receiver about your memories. This may be your last chance for positive closure to your relationship.
A week or two before death. As with the period around the diagnosis, this stage of the illness tends to be a time of family “crisis.” People may come in from different parts of the country. It can be very sweet and tender. It can also be intense and very emotional. Family dynamics may be stressful. In some ways, there is not much that you can do to change this. Be understanding of others who are emotionally troubled and extend that gentle understanding to yourself if strong feelings rise within you.
On the physical level, caregivers often worry that they don’t know what to do to help their care receiver in the last weeks or days. The most important consideration is to be sure that your care receiver is not in pain. Your doctor can advise you on the best pain medications and their side effects. As the end nears, your care receiver may go in and out of a coma-like state. Typically, her breathing will change at some point. It will slow down and may even get noisy towards the end. This is natural. Eventually, her breathing will stop, as will her heart. At the actual moment of her passing, there may or may not be a slight shudder as her bodily systems shut down.
Time of mourning. Even though it may seem that parts of your care receiver “died” long ago, it is still sad when your care receiver passes on. You may find yourself feeling very empty. You may also feel relieved, and then guilty that you feel relieved! be gentle with yourself. This is a tender time, and you are likely to experience many feelings. For the next few weeks or months, you and other family members may have a hard time concentrating. This could impact your work. Most employees find their supervisors are understanding once they know there has been a death in the family.
Some family members may find it difficult to accept your care receiver’s passing. They may struggle with resentment, anger, or guilt. Conflicts over a will and the dispersal of property can become even more enflamed if people are having trouble letting go. Family dynamics can be very stressful. This, like the days just before death, is a time to be forgiving of yourself and others.
There is no “right way” to grieve. We all do it in our own fashion and on our own timetable. Some people recover soon from their sense of loss, while others take years. If you feel that your grieving is getting in the way of living your life, you might want to talk to your clergy or a counselor. Or you might consider joining an in-person or online grief support group.
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How advanced is your care receiver’s dementia?
Early dementia. The beginning phase of dementia is not much different from the normal forgetfulness of aging. Your care receiver may or may not notice the changes in her memory (sometimes, those with dementia forget they are even having problems!). She may become more irritable or even depressed. She may not want to admit she is having problems. If she has a partner, her spouse may consciously or unconsciously try to cover up her lapses in memory. The prospect of having dementia can be very scary. This can be an emotional, frightening time.
If your care receiver is willing, a visit to a doctor can help. There are many reasons for memory loss that can be treated. There are also medications that can slow down the progression of many of the memory diseases. However, your care receiver does have the right not to go to a doctor. It can be frustrating to watch from the sidelines, but you need to allow her to make decisions, unless she is jeopardizing her safety or the safety of others. Your job will be to watch for changes that threaten her welfare. For instance, she may not take her medications, she may leave the stove on, she may not drive safely, or she may forget to pay her bills. Sometimes it helps to talk to a professional in the field of aging to get a sense of what to look out for and when you may need to take action. It’s also a good idea for your care receiver to talk to a lawyer, as well as the rest of the family (if she’s comfortable with it), so she can put her financial and legal affairs in order while she is still thinking relatively clearly.
Mild dementia. Your care receiver is probably starting to forget things more often and to be having more obvious problems with her memory. Although she may deny it, her confusion is playing a larger role in her life. It is extremely common for people in this phase of dementia to withdraw and become depressed. They are having trouble doing things they used to do with ease. Conversations are awkward, they can’t remember people, and they get easily lost or disoriented. Your care receiver may also be more emotional and may “over-react” to even the simplest problems. This is a normal and common response to the confusion caused by losing one’s memory.
As with the early phase of dementia, your care receiver will very likely benefit from a visit to a doctor. There are medications that can slow the advancement of the disease. Her doctor can also remedy other conditions, such as depression or hearing loss, that can be making her life even harder. Encourage her to go to the doctor, but remember that you cannot force her to make this decision. You will want to be watching for signs that she may need to make some larger life changes. Problems with driving, leaving the stove on, forgetting her medications, or not paying her bills are all signs that she may be a danger to herself or others.
Because many forms of dementia become worse over time, it is very important at this phase that your care receiver get her legal and financial affairs in order. Although it is uncomfortable to bring up issues like seeing a lawyer, now is the time, while she is still thinking clearly enough to express her wishes. If you wait too long, you will not know how she wanted to handle things. This can make difficult family decisions even more complicated.
Moderate dementia. This is the phase of dementia that most people hear about: an elder who gets lost or someone who does not remember her own children. It is a difficult phase because one’s reasoning abilities are gone, as is one’s good judgement. Physically though, your care receiver may be very mobile and, in fact, quite restless. Your care receiver may need lots of supervision, much like the supervision a toddler requires. However, it would be a mistake to treat her as such. She is an adult, and she has lived enough years as an independent person that she will not take well to being ordered about like a child. She needs to be watched over carefully yet treated with respect.
In addition to the extra supervision required, your relationship with your care receiver will change intellectually. She will be more emotional, and she will no longer be able to engage in abstract conversations. Much of the time, she may confuse the past with the present, but arguing with her about it will only make things worse. She’s not doing this on purpose; it’s the unfortunate course of the disease. Her perception of “reality” is very real to her.. she will probably get angry if you try to talk her out of it.
Caring for someone in this phase can be emotionally and physically exhausting. You need to take breaks. Dementia is a long-term condition; thus, you need to pace yourself for the long haul. By taking breaks and maintaining interests and friendships outside of your caregiving role, you are taking important steps to prevent burnout and assure your ability to remain a good caregiver over time.
Advanced dementia. At this point, your care receiver probably is very limited physically, as well as mentally. She very likely has trouble moving, and she is unable to care for herself. She may need help with eating, bathing, dressing, and even going to the bathroom. She may also have trouble understanding what you say or communicating her needs.
A caregiver’s main concern for a person with advanced dementia is to be sure that she is not in pain. Your care receiver no longer has the verbal skills to tell you when something is hurting her, so you have to pay attention to physical cues and her emotional state. If she seems unusually restless, aggressive, or irritable, it may be that she is in pain. If your care receiver suddenly displays any of these characteristics, and you can’t find anything wrong, you might want to take her to the doctor to be sure there is nothing medically causing a problem. It is not uncommon for people in this phase of dementia to have infections–especially bladder infections–or other physical ailments that go undetected.
Care receivers who are in the advanced phase of dementia, like those in the moderate phase, are unable to remember much besides the distant past or the immediate present. Your care receiver may confuse the two often or even hallucinate, seeing things that aren’t there at all. As long as she is not upset by this, it is best to go along with her perception of reality. Challenging what seems very real to her will only make her angry. If she becomes upset, you may be able to distract her with some other activity or by moving to another room or location.
With all the help your care receiver requires, you need to be very honest about your ability to do it all. This phase is very physically demanding. You may want to handle all her care, but that is a tall order. Be aware that you are uniquely qualified to give emotional support. You may want to conserve your strength for this and get help with some of the other tasks that wear you out. Many counties have programs that provide in-home help so low-income seniors can remain in their own homes. There are adult day centers that can offer daytime respite, and nursing homes that can take in your care receiver, even just for a weekend, to give yourself a break. Or, it may be that the best care involves a long-term move to an assisted living facility or a nursing home. These are difficult but important decisions. You do not have to give care all by yourself.
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