Dementia Sucks

I don’t know the person living in my loved one’s body, but it is not her. I get a glimpse of her every now and again, but only for a moment. For the most part, this version is very pleasant and I don’t miss the less than pleasant moments. I do miss the real moments though, even if they were quite frustrating most of the time. Dementia not only robs the one with the disease, but the whole family as well. We have to worry about safety and know that it is not possible to have a relationship with the person we have always known. Dementia gives you the unique opportunity to grieve your loved one over and over again, as if once is not unpleasant enough. Their needs keep shifting and their personalities change, too. You never know what to expect. What works on one day may not work the next. They may get significantly better for a while and then get a lot worse. One day they may seem mostly fine, if you aren’t paying close attention. Other days, it’s like talking to a stranger. Albeit, she is a pleasant stranger for the most part. Dementia is one of the most cruel diseases for the family. In many cases the person maintains their physical health and abilities much longer than they are able to maintain their memory and decision making abilities, which leads to falls, wandering and injuries. It also makes them easy prey for less than scrupulous people that may exploit them financially or selfishly expect this person to continue to provide for their needs in any way. Overly dependent children finally have to grow up and spouses may suddenly find themselves in a reversed caregiving role. Having those uncomfortable talks with your loved one about giving up their freedom to travel alone or have full control over their financial decisions is even more difficult when they are cognitively impaired as well.

At first it is hard to tell your loved ones are slipping, beyond what would be expected for their age and condition. If an elder suffers from a severe hearing and/or sight deficit, it is easier to assume that is the reason why they are participating less in activities and things they used to enjoy. Sometimes the baseline behavior of the person is such that they have isolated themselves from family prior to their decline because they have been unpleasant or controlling. With all of my family members that have suffered with dementia it has taken a serious event, such as a stroke, in order to get the attention they needed and have the testing done that discovered the damage. With my grandmother, we had little warning. She started having more falls, and with that, came fractures. She had always been obsessed with her weight and a little hard to get along with, so her decrease in weight and irritability did not stand out. She began to drop things more frequently as well, and she would say that she got lost in her own house looking for the bathroom in the middle of the night. We all get disoriented occasionally upon waking. Her vision was more impaired, and she had in fact been taken to the eye doctor a few times for testing even after cataract surgery. There was no physical issue with her eye, but her brain was not functioning properly. The symptoms are hard to define even if you are living with the individual at times, especially when others are over-functioning for them. Many times spouses or others will step in and help them, which is kind, but it also makes it easier for the person to hide the severity of their symptoms. Even if a person is surrounded by medical professionals, the initial symptoms are easy to pass off as something else less relevant. Below are five ways that people with dementia can effectively hide their early symptoms. Unfortunately, doing so deprives them of a chance for early treatment. You just can’t get back what is already lost, but you can slow the progression.

1. Refusing to participate in an activity they once loved.

Refusal to do a chore, play a game that was once simple, or try something new can signify a problem. Mom or Dad may be having trouble remembering how to do activities that were once second-nature, which makes learning new information even more difficult.

2. Covering-up problems.

Whether it’s having trouble driving or interacting with family and friends; spouses often cover for their loved ones. They’ll step in and complete tasks, finish sentences or make excuses for their spouse.

3. Being in denial of their own cognitive impairment.

Insisting they’re fine when there’s an obvious problem often signifies denial. Excuses such as, “This is normal forgetfulness for my age,” or “I’m fine, just tired” are some signs of denial. Making excuses protects the elder in their eyes by convincing himself or herself that everything is fine so they don’t need to worry, when, in reality, they may not be fine and might need either some form of treatment or an alternative living arrangement.

4. Keeping it a secret for fear of being put into a home.

No one wants to give up their freedom. Seniors will go to great lengths to cover up they are going downhill so that they can remain “independent.” Some studies have indicated that people who have a high intellect and more education can cover up the signs of dementia for a longer period of time. They can even deny it to themselves longer. These people simply start at such a high level of knowledge that others don’t notice a slight slip. This isn’t, of course, always true. Many who have not had higher education are very clever and can cover up memory slips with ease. No two people are the same, so adult children should be on the lookout for signs of deterioration in their parents.

5. Having anosognosia.

More than denial, anosognosia is a lack of awareness of impairment — most people do not even know that they are ill — and it affects up to 81% of those with Alzheimer’s. Anosognosia is still difficult to define, but researchers know it results from anatomical changes or damage to the part of the brain that affects perception of one’s own illness.

Dealing with aging relatives and those with chronic diseases is very difficult no matter who you are, and no matter what the relationship was before the illness set in. The only words of advice I can give with any confidence at all after going through this many times, is to make sure that you are going to be okay with your behavior and actions toward your family members if you were to never see them again. At this point, it is no longer about the relationship you used to have. We don’t have to accept dysfunction or abuse, and even the most docile person may sometimes lash out at others for no reason with dementia. If the person had always been difficult they may become docile, or they may swing wildly emotionally. You never know what you are going to get, if the next time you see your loved one they will recognize you, or maybe they will no longer be there. Don’t be a right fighter to the detriment of your long term peace.


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