The Good Doctor
When caring for a loved one with cognitive decline, one meets a lot of doctors! I could easily have called this chapter “The good, the bad and the ugly…” but whichever title I select at the end of the day, you will know that I have plagiarized them all, from either a film or television series, just to get your attention. Forgive me this one weakness. A good doctor really is a treasure. Just how much of a precious gem they can be, has become evident as I have expanded my horizons to give advice online. What others share is quite shocking and I do not shock easily.
There is a substantial portion of the general public which apparently look at memory loss and strange behavior as something one can simply expect in the older generation. Many take on the care of an individual, but never actually develop a relationship with a doctor who will come to understand the patient and his/her needs. In the case of dementia, an attentive doctor is essential not only to be there to improve the quality of life for the patient, but for those around him/her as well.
The most upsetting scenario which I have encountered is as follows:
“We have not had our loved one assessed by a medical professional because he/she is unwilling to go to the doctor for testing. He/she says there is nothing wrong. He/she refuses to take any medications, so why bother?”
As one might surmise, this is a bit of the tail wagging the dog. The person who has diminished mental acumen, cannot determine what is best for their own health, nor can they begin to comprehend the benefits which medical assistance might provide. This individual has decided to do nothing… and the family members accept this? They live with this absurd situation, and they suffer along with the patient. The family then must accommodate the following behaviors:
1) Almost unavoidable anger issues, which result from absolutely nothing rational.
2) Accusations of theft (money, clothing, possessions, documents) when none has occurred.
3) Hallucinations abounding out of control.
4) Accusations that someone is trying to kill them, quite often the very person who has committed to caring for their every need.
5) Their loved one with cognitive decline is almost inevitably, in severe depression.
6) Intransigence on the smallest issues which can develop into fury, and on occasion, physical violence.
7) The resulting extra stresses of caring for such an individual 24/7.
Forgive me for not being more understanding of those who accept these behaviors as unavoidable. These crises certainly can be ameliorated, and sometimes eliminated completely.
When the family members give in to this whim of a dementia patient, there is nothing to be done. Prayers might be helpful, but I doubt it somehow. There are creative (albeit devious) ways to get a loved one into a doctor’s office without their understanding that they are actually the patient. You could ask them to accompany you because YOU need the appointment. Whatever it takes, it must be arranged. Generally explaining to such a person that it is for their own good, is a total waste of time and energy. They can neither process your reasoning nor retain it on the way to the appointment. It would be much better to tell them you will be taking them out for lunch, with a short stop on the way.
Reports of doctors (this can happen anywhere in the world) refusing to acknowledge that a patient has dementia, are also very distressing. No one knows better than those who live with an individual, how much their cognition has declined. There are times when the standardized tests are given, and the patient does well on them. Two hours later they may not know where they are or where they have been that day. A doctor is only as good as his/her instincts. A good doctor will listen to family members who ask for his/her assessment in order to help someone that they care about. A good doctor will not simply tell the family that what they are experiencing is normal with age. He/she will investigate further. The alternative is entirely unacceptable.
It is most helpful if one prepares before taking a family member to a geriatrician to discuss behaviors which have changed recently. It is best to write the issues, legibly, on paper – computer generated or typed is best as they require the least effort on the part of the physician – and hand the concerns (numbered and simply explained), to the doctor at the beginning of the meeting. It is not our goal to either upset or insult our loved one, nor do they need to know exactly what we are worried about. Generally, the doctor will use these written concerns, as a place to begin the investigation into possible mental decline. It is upsetting for anyone to be looked at through the looking glass of dementia, and it is our responsibility not to avoid the appointment, but to make sure that it is pleasant for the patient. So much is in our hands.
If one should find themselves with a doctor who is not sensitive to either the patient or to the family, unequivocally, I must recommend that the doctor be deleted from your contacts list. Ask friends for recommendations of doctors upon whom they depend, and select one. There is no reason to accept mediocrity, a lack of concern, or impatience from a medical professional. They chose this profession, and we need them to be outstanding. Often families do not stand up for the kind of attention they require, and deserve.
Whenever possible, do not limit your patient’s contact to only the family doctor. Request a referral to a geriatrician. They specialize in the elderly and dementia is part of their training. In the case of individuals with early-onset dementia, a neurologist most certainly would be a next port-of-call. Many general practitioners have limited experience with the medications which are constantly changing in the area of dementia. Some will look up medications in a text or online to fill in their lack of experience. That is not sufficient. A doctor who has firsthand experience with patients’ reactions to specific medications is essential to proper care of your loved one.
On a personal level, I must admit that I prefer a geriatrician to a neurologist for most of the issues which arise with cognitive decline. They are more likely to look at the whole patient and that is the care truly needed.
It is important to understand that as of this moment, while my fingers are typing on this keyboard to write this article, there is no known cure for dementia. It is caused by one of over twenty-five different diseases or conditions which cause damage to the brain. It is extremely complicated and patients differ considerably. There are a multitude of prescriptions which can help. They may help to activate the brain, reduce stress, reduce anger, reduce vomiting, increase hunger, decrease water retention… the list goes on. These medications are very specific and the good doctor is not one who instantaneously knows which pills will do the trick, but the person who will help you to discover which are helpful for your specific patient – regardless of how much of his/her time and your energy are involved. You want a doctor who will not give up on your loved one. You did not, nor should they.
Please take a look at other chapters which I have written about doctors, medications and hospitalization as they relate to a patient with cognitive decline. You will find them listed in the index of thedementiadiary.com. I highly recommend these three titles: “To E.R. or Not to E.R.?”, “Beware of Ologists,” and “A Little Dot Can Kill You!”
Caregiving for individuals with cognitive decline can be a very long road. Issues arise slowly and a relationship with a good doctor will be the gift that keeps on giving. It is up to you to find this professional. Show your appreciation when they support your needs. Good doctors are not rare, but indeed, they are a treasure. Do not give up until you find one!
