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No One Wants Dad

April 10, 2017
“When Dad’s Alzheimer’s got worse, Mom would call frantically and sometimes I could hear him screaming in the background. His irritability soon became aggression, so the first time Mom called sobbing that he had hit her, I knew that this was going from bad to worse, a lot worse. My brother and I talked on the phone and explored all the options – senior home care, assisted living or a nursing home. After we researched the benefits and costs of all of our options, we talked to an assisted living facility admissions administrator who told us that Dad’s ‘history of aggression and violence’ made their facility a non- option. Dad wasn’t a good fit for a nursing home either. Nobody wanted dad.” “The senior home care agency was a blessing and our wonderful caregiver was excellent with dad - until he kicked her. It’s been downhill from there and when Mom died I knew he would have to come to live with me, or me with him. My brother would provide some financial and long distance emotional support, but in the end I was the only choice. And so, my life interrupted, humiliated and frustrated by Dad’s behavior, I live with my dad and terrific and patient caregiver sent by a Home Care Agency. I’m 58 years old and my life, as I knew it, is over.” That is a true story told to me by the loving daughter of an Alzheimer’s dad. While most people think Alzheimer’s is a “Memory Disease”, there are many neurological and psychiatric symptoms. Alzheimer's patients often develop delusions and are convinced their family is stealing things from them when they can’t find something or a family member uses the checkbook to help with the finances. Active aggressive behavior towards their spouse and family makes it difficult to remember that Alzheimer's aggression really has nothing to do with others and everything to do with their own shame, pain and frustration. Anger and aggression is common among Alzheimer's patients. There's swearing, screaming, hitting, kicking, grabbing, pushing, throwing things, scratching, biting and making strange noises. More than 5 million Americans are diagnosed with Alzheimer's disease every year and up to half can show some of these behaviors. Physically aggressive behavior is an issue with many dementia patients and those most in danger are the people with dementia themselves and their caregivers. Violent behavior presents a particularly distressing problem for families. They know their loved ones with dementia generally don’t intend to cause harm yet when confused, fearful, angry or in pain, they may kick, hit, bite, throw or shove. (If you have had experience with these behaviors, please give us your comments). The most common emotionally hurtful aggression is verbal, when they might swear at you, make threats, call you names or accuse you of doing things that you haven't done. Whatever type of aggression, it's frightening and upsetting. The first time it happens you may not know how to cope and will feel helpless and scared that it might happen again. People with dementia may become aggressive if they feel frightened, embarrassed or frustrated because they cannot understand others or make themselves understood. Sometimes it happens suddenly when you don't expect it. This is called an ‘over-reaction’ or a ‘catastrophic reaction’, when the person shouts or screams or becomes very agitated for no good reason. People with dementia usually use this behavior to communicate how they are feeling or to express themselves. Aggression may be one of the ways in which they are trying to communicate. It is important to know that the person is not being purposefully aggressive, as people with dementia are not in control of their behavior, thoughts or actions. It's up to you to control your anger, responses and expectations. Dad isn’t taking his anger or frustration out on you personally - it could have been anyone who happened to be there at the time and he will probably forget about it quite quickly.  
How to react when a Dad or Mom becomes aggressive: Stay calm and try not to show fear. Walk away, as losing your temper or arguing will make things worse. Do something to take your mind off what just happened. Fixing a snack or something for both of you to drink could also help things return to normal. If you start to lose your temper, stop. Relax, take a breather and don’t feel guilty. Give Dad or Mom space by standing a few feet away. If he or she feels that you are getting too close, they could lash out physically. Being punched, slapped, kicked or bitten will not make this better. If he or she does become violent, get out of the way as quickly as possible, leaving the room if necessary, and return once they have calmed down. Arguing with a person who has dementia will only frustrate both of you as she or he is not able to reason or understand why you are upset. Don’t try to reason with someone in this state. Concentrate on speaking in a calm, reassuring voice distracting them from whatever triggered the episode.
  • Do not laugh or tease as it will make things worse.
  • Do not punish them.
People with dementia often have severe reactions to feelings of failure. When you show or tell the person what to do, explain what to do step by step, with plenty of time in-between for the person to carry it out. Do not give too many choices, as this will be confusing. Don’t criticize mistakes or inadequacies. Give praise for efforts and achievements. Encourage independence by letting him do as much as he can for himself. Explain to visitors that your Dad might not recognize them and they must not put pressure on him to try to remember them. This can be a severe source of feelings of embarrassment and humiliation. You also have your needs and there will be times when you feel that you cannot face one more day with the weight of this upon you. Take a walk on your own or sit in a quiet corner and try to relax. Attend a support group if there is one in your area, as the people who attend will understand your problems. Should the aggression just get worse no matter what you try, discuss the problem with the doctor as Alzheimer’s is a progressive disease and a full re-assessment or other form of intervention such as medication might need to be considered. A home caregiver with Alzheimer’s training might be considered. I know that you once thought this just couldn’t get worse, and then it did. Forgetful became agitated, became dependent, became aggressive. Dementia effects the entire family. You’re not alone. You are not cruel or unloving for having these thoughts. Your life has been impacted, damaged and disrupted by this horrible disease. Dad or Mom were not always agitated, aggressive and violent. You are here with them because they weren’t always this way. They did love you and care for you, and those are the memories you need to count on to get through this.