Deny, Deny, Deny

…and the problem won’t go away, or in this case, the illness.

When we are young our parents are the people that we look up to, both literally and figuratively. We hold their hand when we cross the street; we consult with them regarding problems at school, with friends, and rely on their advice-it is solid, and we can trust this.

As we grow, we rely less on our parents; we begin to handle things on our own, and distance ourselves both emotionally and physically-this is a natural process. One thing that does not change, however, is the knowledge that our parents are still available to us for advice and support. They remain the solid rock for us and we never expect that to change. This is the way life is supposed to be parents sought out by children.

And then the rock begins to crumble a bit. This crumbling is caused by age and its never ending challenges. Parents begin to seek out the assistance of their children-at first because of physical limitations-getting on the ladder to clean the gutters, cutting the lawn, shoveling snow, etc. This too, can be an expectation in life and the parent/child relationship.

When dementia or neurological diagnoses come into play, the crumbling of the rock is less anticipated. It is often a gradual process and therefore less identifiable, especially to those who are a constant part of an elder’s life. It is often accepted as just getting old, and sometimes, we hope that it will change for the better, we enable our parents so that we can believe that it is better than it is. We cannot admit that our rock is really crumbling and no longer as solid as we once knew it to be. The physical rock has not changed in appearance, but its ability to provide advice and support is no longer part of this rock’s constitution.

I say that the rock is crumbling, but it may be more appropriate, especially with persons who have a diagnosis of dementia, to say that the rock is softening. The rock is not as stable, but the emotional aspects of love and being loved; caring and being cared for are still very much a part of this person who we, as children considered so strong and unfaultering. The most difficult challenge for children living through this transition is how to provide this love and support.

Many families come into a crisis mode at this point. One sibling says ‘yes, mom is not able to make the decisions she used to, and we need to put things in order so that we are all prepared for this as it progresses’. Another sibling may say, ‘but she is our mom, we cannot take away the car keys and not allow her to cook-that is who she is, our chauffeur and cook’ yet another family member may say ‘maybe we need to just put her in a nursing home now, so that she is taken care of as she gets worse, she won’t know the difference in time.’ These are totally different perceptions from persons raised by the same parent-how can they possibly be so far removed from each other.

I have heard it said, and I believe that it is wise to accept this premise-‘the actions of a person with dementia are really the actions of the disease, not the person, the person is still the same’ – Your mother/father is still your mother/father. They are just not able to ‘demonstrate’ their love and support in the same way that you are used to them doing.

So, the question is, where do you go from here?

The first step, I believe is learning-about the illness that is causing the changes in your parents’ life and how it will have a rippling effect into your life. Be aware at an early stage that this might be happening to your loved one. Do not ignore the subtle signs, a pot left burning on the stove, overspending, or inappropriate spending, missing appointments or forgetting dates, repetition, poor hygiene. These are all indications that your loved one may have ‘something going on.’ You know them better than any health care professional. Now, it is up to you to alert your family doctor of the changes that you are observing. Do not let any physician dismiss you with regard to what you know is not right. If any physician says this is normal aging, make another appointment, with another physician, one who specializes in gerontology. You may also consult with a neuro-psychiatrist to receive a very comprehensive exam. Approach dementia just like any other illness. Allow your loved one to be diagnosed and treated, if possible. Be aware of the road your are going down, plan for it, and be a part of your loved one’s journey. Now it is your turn to be the rock of support and love.

After a diagnosis has been confirmed, it is time to plan the financial and day to day changes that will be taking place. While the dementia is still early, talk to your parent about their expectations. Do they want to be in their home forever? If so, the financial reality of in home caregivers must be considered. If this is not realistic, begin discussing assisted living and dementia care programs. There are many options that are very helpful and very accessible-if planned.

So you choose to believe that your parent will be ok, and it’s just a little forgetfulness-they will be fine, it won’t get worse. Then, you receive the call from the local police department that your mom/dad was found at the grocery store, lost and not able to find their car. When they found their car, they were not able to determine how to get home. This is the reality of denial. Is this fair to your parent to have to go through this? No.

Could this have been prevented-absolutely.

I never said that this intervention would be easy. You can do this as a united family, or you can enlist the assistance of a professional geriatric care manager. This is up to you. The need for an outside professional depends on your ability to be objective and available. If you want to remain the child and provide love and support, then seek a professional to be the decision maker in your parents’ eyes. This will enable you and your parent to remain in tact. Parents will see the care manager as the professional and may learn to resent them instead of you, their child.

Dealing with dementia in a proactive manner is your best option. Know that every person’s dementia is as unique as they are. Being open to the changes in personality and routine is essential. It is not going to get better or go away. Some research has shown that early intervention with medication can slow down the progression of certain forms of dementia. There is no cure. The most helpful approach is to know ahead of time what your loved one would like as their dementia progresses. Do not be afraid to discuss this. Your loved one is just as afraid of this as you are; and what better place to open up feelings than in your own home with those that love and care about you the most.

Oh, and don’t forget to laugh once and awhile. People with dementia often maintain their sense of humor. If they see you able to find humor with them, they will be put at ease. They will know that you have not been consumed by the illness, but that you are still consumed with the loving and supportive relationship that you have always had.