It is always difficult for a family to accept changes in a parent or spouse or other loved one that creates the need for support of Activities of Daily Living (ADLs and Instrumental ADLs). Those changes can result from physical frailty or a chronic or acute medical condition. Sometimes, however, the loved one may be physically robust, but suffering from dementia (of which, of course, there are over 1,000 forms).
In some ways, having a loved one with dementia is the most difficult situation for many family members to manage. The first reason is that we are not necessarily well educated about dementia.
We know Alzheimer’s exists and maybe a few other varieties, such as vascular dementia. However, while the situation is changing, our awareness of the true nature of dementia is often quite limited.
Too often, families and friends see just a bit of memory loss, and associate it with (natural) aging. True memory loss is not, however, a function of natural aging. When such a condition is observed, it needs to be explored with one’s primary physician and, hopefully, a neurologist. Dementia is a disease, not a result of normal aging.
Nor is it ever as simple as just memory loss. What most family members and loved ones of a dementia sufferer do not realize — or do not want to — is that cognitive impairment means issues of judgment and decision making and sometimes personality changes, as well as the (often progressive) loss of memories.
When Mom or Dad or a spouse begins to exhibit signs of dementia, loved ones often try to “protect” the person with dementia, keeping things as “normal” as possible. At Support For Home, we have had many, many conversations with family members who say things such as,
- “Dad can still drive. He just drives around the neighborhood, maybe up to the grocery store, a mile away.”
- “No, we have not taken away the [check book / credit cards / cash in the house / …].
- Mom would not have let us do that, [or]
- Mom deserves to manages her own finances, [or]
- “Uncle Bill just needs someone to clean the house once a week. He’ll be fine on everything else.”
- “We do not have Power of Attorney, but we will get it when we need it.”
There are many, many variations on this theme, unfortunately. They are all delivered with love and respect, but not necessarily with an understanding of what the consequences are for the loved one or the family.
If Dad starts writing three or four checks for the same bill, it will take a while to straighten out, and it will not be fun.
If that short drive to the grocery store ends up with Mom being hurt in a crash — or maybe a child — that may never be straightened out.
The bottom line is that dementia is a debilitating and usually progressive disease. Families who think their loved one will stay on their current plateau — or even get better, be “normal” again — are deceiving themselves.
The first thing that they need to do is make sure their loved one gets a full diagnosis. If it is dementia, what type of dementia is present. The course of the disease will vary, as will the treatments. According to WebMD,
Although many diseases that cause dementia are not curable, some forms of dementia may improve greatly when the underlying cause is treated. For instance, if dementia is caused by vitamin or hormone deficiencies, the symptoms may resolve once the problem has been corrected. Therefore, dementia symptoms require comprehensive evaluation, so as not to miss potentially reversible conditions. The frequency of “treatable” causes of dementia is believed to be about 20%.
So, do not despair if dementia is present, but do not pretend that everything will be OK, either. Investigate, educate, ameliorate.
Best wishes. Bert