A patient may develop difficult behaviors and moods.
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For example, a prim and proper grandmother may begin to curse like a sailor. Or a formally trusting gentleman may come to believe that his family is plotting against him, or experience other hallucinations and delusions. In the latest stages of most types of dementia, patients become unable to attend to activities of daily living such as dressing and toileting independently. They may become non-communicative, unable to recognize loved ones and even unable to move about.
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Be realistic about what constitutes success during the progression of the disease. Success is helping to assure that the person you are caring for is safe, and as comfortable and happy as possible. Most experienced dementia caregivers will tell you that the person they care for has good days and bad days. Also, be realistic about the course of the disease. Dementia will tend to get worse over time, and there is no known cure.
A prominent exception is dementia induced by medications, which can be reversed when medications are withdrawn. Care starts with empathy and compassion. This holds true in all human relationships, but may be especially salient for dementia caregivers. For example, people with dementia are prone to becoming confused about their whereabouts, or even the time period in which they are living.
For instance, imagine how you felt and would want to be treated if you suddenly found yourself disoriented in an unfamiliar place, not even sure of the year or even your own identity. Whether you are caregiving for someone in your family, or whether you provide care professionally, never be afraid to ask for help.
Many family caregivers find support groups immensely helpful. Support groups allow caregivers to vent in a group setting with people who understand what one another are going through.
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Caregiving for someone with dementia is not easy and there will certainly be moments when professional caregivers need a hand or someone to talk to. The only inevitable is change when you are caring for someone with dementia. Never get too used to the status quo. That means that family caregivers should prepare for a time when their loved one may need professional memory care in a residential setting. And by the end of the day, you are often too tired to pursue something of interest to you. Getting a break from caregiving and having some time for yourself will not only increase your patience and resilience but will give you a chance to do something that is meaningful to you, whether it is socializing, going for a walk, or reading a good book.
When tired and stressed, it is harder to stay in control of the things we say and feel. Feelings can go up and down very rapidly. We can lash out at the littlest thing because we have no reserve.
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If you find yourself feeling cranky and irritable, you probably need a break. You also may need to get some rest, as we are in less control when tired. As a caregiver, you are at risk for depression. And sometimes it makes you want to cry. Depression is treatable and should be taken seriously.
Professional help is available. Talk to your physician if you think you might be depressed, join a caregiver support group, find a counselor who understands caregiving, and ask for help from friends and family. Moving your body is a proven way to relieve some of the symptoms of depression. Having to help toilet someone can be too intimate an experience for many caregivers.
If the care receiver is incontinent of stool as well as urine, then changing an adult diaper can be nauseating and repulsive. Having to clean the private body parts of someone, like a parent, can be unnerving and uncomfortable. Watching someone eat sloppily or not care for personal appearance, or having to clean up vomit can also cause feelings of disgust.
The hardest thing about accepting our revulsion to these things is that the care receiver is not in control of these behaviors. But sometimes we think they are doing it on purpose just to get to us. Or we feel guilty because we think we should be accepting but we are not. Hire an attendant to do routine care or have someone from the family do these things who might cope better. Also, learn tricks to make tasks easier e.
An occupational therapist can help you find this tool and other tools to make meal time easier and more enjoyable for both of you. Incontinence is one of the main reasons given for placing someone in a facility. Both of these resources are in the Caregiver Education section on our website. Does your care receiver make impolite comments when you are out in public? Does he or she need to use the restroom right away and make a scene as you try to find one? Does he or she refuse to bathe and now have body odor? It is easy for us to feel responsible for the behavior of someone else and feel like it is our fault when these things happen.
Others have friends, family members, or an attendant accompany them when they go out to offer assistance, when needed. What if something happens?
Emotional Side of Caregiving
Will I be able to cope? Will I feel guilty? Am I responsible for things that go wrong? It is important to have contingency plans. So, it might make sense to have a back up caregiver in mind in case something should happen to you, or to think about how you would handle predictable medical emergencies based on what disabilities your care receiver has. When you get scared, it is often helpful to talk to someone who knows your situation and can give you perspective and calm your fears.
Frustration is part of many other feelings, such as ambivalence, anger, and impatience.
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And if you are tired, you are more likely to get frustrated. Frustration may lead to stress eating, substance abuse, and a higher likelihood of losing your temper. Acknowledge how frustrating caregiving can be. Join a support group to learn the tricks other caregivers have learned to make coping easier. Get breaks from caregiving so you have time for YOU and a chance to refresh your energy. Watching the care receiver decline, not being able to do things that used to be easy and natural is sad.
We also grieve for the care receiver, the person who used to be and our relationship with that person. We often need to grieve the loss we are experiencing on a daily basis or it will come out as something else. Sometimes creating a ritual can be helpful.
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One caregiver would write on a piece of paper the things her husband could no longer do, then go to the ocean and throw the pieces in the water as a way of letting go. We tend to want to avoid the sadness that comes with grief, but allowing ourselves to feel it promotes healing. Guilt is the feeling we have when we do something wrong. Guilt in caring for care receivers comes in many forms. There is guilt over not having done enough to have prevented them from getting sick in the first place.
There is guilt over feeling like you want this to end. Or guilt over having been impatient with your care receiver too much. There is guilt over not loving or even liking the care receiver at times. There is guilt over not doing enough for the care receiver or not doing a good enough job as a caregiver. And if the care receiver falls or something else happens, there is guilt about it being your fault that it happened. And sometimes caregivers feel guilty about thinking of their own needs and see themselves as selfish, especially if they should do something like go to a movie or out to lunch with a friend.
You need permission to forgive yourself. How difficult is it to get your care receiver up in the morning? And you have other things to accomplish that day. All this and the care receiver is acting unhelpful and moving slowly. It is understandable that you would get impatient at times. Leave a lot of time to accomplish tasks. Leave a LOT of time. Create a list of the things you are in control of and are not. Understand what you can and cannot control. Do you sometimes feel jealous of your friends who are able to go out and do things that you can no longer do, because of your caregiving responsibilities?
Are you jealous of your siblings who are not doing their share to help? Do you feel jealous of a friend whose parent died quickly and easily while you take care of a parent who has had dementia for many years? Are we jealous of someone who got a big inheritance since we are struggling to pay bills and to be a good caregiver? Most of us do not want to be dependent on someone else.