DEAR DR. GOTT: Your recent columns regarding dementia patients and caretakers have been of great interest to me — particularly the one stating the physician needs to remember there are two patients, the dementia patient and the caretaker. I am in that position right now with my husband. Not only is he in the early to mid-stages of Alzheimer’s, but he also has a pacemaker, some heart trouble, and suffers from a low BP, pulse and iron level at times. It is indeed a harrowing experience for the patient and caretaker. As his wife, I suffer from the trauma of watching someone I have loved and been married to for 47 years “go away” and say and do things that are out of the ordinary for him. He is still in an early enough stage to know what is happening and is terribly angry and despondent over it. He had to retire, stop driving and doing things around the house all at the same time. The caretaker also suffers from this depression and anger.
With the future in mind, I am looking into daycare facilities and long term options for the day I know is coming. Our children do not live close to us, have families and jobs and I try not to burden them by “borrowing” their time; however, they are there if I need them and even when I don’t.
As to the doctors’ visits, I take him each and every time — sometimes the children join us. He has wonderful doctors and I have no complaints regarding the care he receives. They consult each other to ensure that prescription changes etc., do not interfere with the ultimate focus on the Alzheimer’s. However, I do wish they would take the time to speak with me (as his wife and caretaker) personally. They talk directly to the patient but ask questions of the caretaker with the patient listening. We should be questioned privately about how the patient is acting and what he is doing. It would also allow the caretakers to ask the questions they need to know the answers to ensure the caretaker’s physical and mental health is not being affected.
My husband remembers a lot of things he shouldn’t and doesn’t remember the things he should. I feel hesitant to speak freely for fear he will think I am “against” or “tattling on” him. Several months ago he signed a power of attorney giving me the authority for his health care decisions and, ultimately, the right to die with dignity. Perhaps physicians who deal with Alzheimer’s will give some thought to splitting office time to talk with the primary caregiver privately. The patient could be kept busy with tests, checking vital signs, etc.
DEAR READER: Your perceptions are so accurate that I am publishing your letter in its entirety. The privacy issue is certainly one that needs to be addressed. You have the dual role of wife and caretaker. This gives you a better standing with your husband’s doctors and allows you to make decisions about what is best for him from both perspectives.
Unfortunately, non-family caretakers are often (incorrectly) viewed as second-class citizens by both doctors and families. I plead that they be included in medical issues, are treated considerately about their commitment to the patient and his/her family, and be allowed some “free time” away from the 24 hour stress of patient care.
Regardless of family status (or lack thereof), both patient and caretaker need to be heard. Because your husband is still in the early stages, it is appropriate he be assessed by the doctor, one on one, so to speak. However, as you stated, problems can arise if the patient feels threatened or offended if the caretaker must answer questions regarding behavior, etc. Your suggestion is more than appropriate; dividing appointment time between the two is an excellent option. It allows for free conversation between caretaker and doctor. Most doctors today have nurses who do vitals, etc. before the actual visit and this “patient busy time” provides an appropriate opportunity.
As a wife, you WANT to know what is happening and what will happen to be able to prepare yourself emotionally. As a caretaker, you NEED to know these things and how to deal with them as they arise to benefit both you and the patient. I only hope some physicians will read this and perhaps make this a part of all Alzheimer’s patients’ appointments.
Finally, I recommend that you speak to your husband’s doctors about your concerns. Perhaps a telephone call is the best choice. This will allow you to provide your husband with something to do yet still be in your care and allow you some privacy to talk. Thanks for writing.
To give you related information, I am sending you a copy of my Health Report “Alzheimer’s Disease”. Other readers who would like a copy should send a self-addressed, number 10 stamped envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.