I went through the very devastating experience of watching my husband’s personality change over the course of his battle with Huntington’s disease. As the symptoms of HD progressed, the most difficult to deal with was the behavioral problems that developed and how do I as his wife still honor my husband, “the man of the house,” but provide the care I know he needs? I also saw the signs of impending violence towards me and others and knew that I had a responsibility to make sure he did not hurt himself, me or a stranger that crossed his path the wrong way. Since founding Assisted Living Advantage six years ago, I have had this same question posed to me by many, many clients. These are some of the most common questions I receive and my insight or suggestions:
1. Why won’t my husband listen to me when I’m trying to help him? He argues about everything with me and doesn’t believe I know what’s best.
People suffering from dementia, whether it’s Alzheimer’s disease or some other form of dementia, often experience confusion and disorientation. Their sense of reality can be quite distorted. As their judgment and ability to reason is impaired, they may no longer understand right from wrong; why they feel the way they do; or, they may not believe that their caregiver is trying to help them. It can be helpful to build a network of people through their doctors, clergy, friends or anyone else that they have trusted in the past to help support your caregiving decisions. In many situations, I suggest to the caregiver that they allow someone else to be the “bad guy” in relating information or care that the recipient is resistant to, such as taking the keys away from someone who should not be driving but insists they are quite capable of it. Let the doctor insist they take a driving class knowing full well they may not pass it an then the caregiver is not the recipient of the anger that may follow.
2. My mother has early stages of dementia, but last week her dementia progressed rapidly and she has been acting out towards me and the staff?
The first thing I suggest is that my clients insist on a physician or a nurse taking a urine sample to make sure that the patient does not have a urinary tract infection or some other condition such as dehydration that could be causing the accelerated dementia. Dementia does not come on rapidly unless there is an underlying medical condition. I have seen it over and over again where a client will follow this advice and it is discovered that there is a UTI or something else going on and once it’s treated, their loved one may revert back to the stage they were in prior to this.
3. My wife becomes very agitated and then curses and throws things at me. How do I calm her down?
The last thing you want to do is to react in a similar fashion. In the heat of the moment, it can be easy to forget that your loved one may be incapable of reasonable thought and that they are expressing themselves in the only manner they might be capable of. In fact, they may not be capable of understanding why they are angry or uncomfortable. It’s important that the caregiver remain calm and gentle. Acknowledge that they are upset. If you are able to see that they may have a physical discomfort going on such as they have slid down in their chair and are uncomfortable or they struggling to eat or drink, address that and their anger may subside quickly. However, if you can’t identify what is wrong and they aren’t clear as to why they are angry, distraction is a wonderful tool. Find something positive to say and guide them into a discussion or activity that you know they usually enjoy.
4. My spouse has become physically violent towards me. Help!
No one should ever have to exist in an environment where they don’t feel safe. This includes the caregiver. If you feel that your loved one is a threat to their own safety or that of others, intervention must be taken. There are often signs before a big incident that trouble may be coming. If you have these warning signs, put together a plan of action by talking with their doctor about what you are seeing. Perhaps, there are medications that can control the behavior. Review your legal documents such as power of attorneys and find out if you are mental power of attorney and have the authority to commit them to a hospital or move them to a more qualified care community. If not, find out what you will need to do to get them the help they need in the near future such as obtaining guardianship. Don’t wait until there is danger to learn what your options are. The last thing you want to do is make decisions as a result of a crisis. If you are already being physically abused, you may have to resort to calling the police to have them committed for evaluation. It may also be necessary to immediately remove yourself from the situation and have another person who does not illicit this behavior from your loved one step in while you decide what needs to happen next.
It is not unusual for a caregiver to feel that they are in a situation that is hopeless and this does not have to be true. By reaching out to others and letting them know what you are dealing with, you open the door to options and solutions that could change everything. The first step is discussing it with someone you trust and being open to the tools that are available. Remember, that if you do not take care of yourself as well, you will not be able to take care of your loved one! ~ Becky