Who Suffers With Dementia?
Who Suffers with Dementia?
You may be wondering why I would ask such a question. Think of all the diseases out there. There are very few that affect others more than the patient. Two years ago, my wife ruptured her Achilles tendon. Sure, I had to do more duties around the house for a few weeks, but I would not really consider that suffering. She was the one hobbling around in a boot or “foot jail” as she called it. Instead, think about what it would be like if she was showing signs of Alzheimer’s.
These situations occur every day. From my perspective as the physician, the patient is always the patient. This is true even if I have known the patient for years. Imagine though how difficult it is when you have been married to the same person for thirty years and they begin changing. It is easy to get used to some mild memory loss. This memory loss is beyond forgetting conversations you may have had which, by the way, is more of a listening trouble than a true memory trouble. The forgetfulness may lead to arguments and blame. Worse memory trouble can lead into paranoia, such as believing that you stole their reading glasses. More extreme examples can be the belief that you are cheating on them. Interestingly, it may be the normal spouse who is convinced that the patient is cheating on them because they can’t believe it would take hours for them to drive to the store and back home.
But some dementias do not start with memory troubles. Poor judgment may be the first sign. Your spouse may decide to change the will to reward their favorite child. Or worse, may call a gathering to tell the entire family who their favorite child is. These patients are also at risk of coercion by telemarketers or email scams. There are also individuals, who I consider elder predators, whom will befriend the patient with hopes of financial gain. The cruelest part of this whole situation is that the patient is completely unaware that they have any trouble. Even physicians may not recognize the trouble as the patient may have excellent short term memory and language skills. The future will help explain the past in this situation because eventually the patient will worsen and the diagnosis will be made.
The transition into recognizing your loved one has a disease is a mixed blessing. On one hand, you now have an explanation for their behaviors over the last few years. But on the other hand, you become aware that this is a progressively worsening issue and a difficult road lies ahead. The normal spouse will slowly take on more and more responsibilities. They will hopefully recognize the need to be in charge of finances and driving. One day they will not feel comfortable leaving their spouse alone. Ever. This may be due to serious mistakes like leaving a burner on or, more commonly, the patient becomes very anxious when alone. Even with a pleasantly demented spouse, constant companionship will eventually cause severe stress. There are adult day care programs that are excellent at helping with this situation.
As the disease worsens, then financial burdens worsen. Eventually, you need more help at home. This becomes twenty four hour care at home. Keeping this level of care may be sustainable assuming there are not significant behavior issues. Behavior issues lead to removing the patient from their home, such as an admission to an assisted living memory unit or a board and care home. These facilities cost thousands of dollars a month. Unless you have long term care insurance, you will be financially responsible for payment as Medicare does not cover this care until you reach a skilled nursing facility.
Now that you have a flavor of these situations, keep in mind that the patient with moderate to severe dementia is completely unaware of their situation. At this point, all of your motivation comes from trying to do the best for your loved one. I wrote this article from a spouse’s perspective, but am well aware that this applies to daughters, sons, sisters, brothers, grandchildren, distant relatives, and friends. Your suffering is not unnoticed. For further information regarding caregiver support in dementia, please contact your local chapter of the Alzheimer’s Association. Michael Nelson MD is the co-founder and CEO of Memento Care Homes and can be found at www.michaelnelsonmd.com.