Caregiving Questions

You already stated the root cause of the problem you face with your father: he doesn't want anything to change. It sounds as though your father has not fully come to terms with your mother's diagnosis, and is still in denial over her condition. This is a completely normal reaction to learning that a loved one has the disease. Hence the resistance you encounter in working with your father and his unwillingness to accept that your mother is no longer willing or able to do the things she once did. Your father may also be grieving for the loss of the person your mother once was. This grief can prompt frustration and anger, and you are an easy target to take out his frustrations upon.

Your attempts to accommodate your father's role as a caregiver, as well as being a good caregiver yourself, are quite commendable. However, it is also possible that your caregiving efforts are angering your father. Again, as you noted, your father doesn't want anyone to change their lives. This resistance to "outside" help is not an uncommon reaction for the patient, or in this case the patient's spouse, because it requires that the patient (or her spouse) admit that they need help and that their lives will forever be different. Therefore, unless your father is physically incapable of caring for your mother, then it may actually help to let him take a more active role in your mother's care. Your father may feel sidelined by your good intentions. Perhaps he feels that you have usurped his rightful role as primary caregiver. Encouraging him to participate more in your mother's day-to-day care could aide in making him more accepting of her condition. This might mean that you visit them less, or else busy yourself with "household" chores (laundry, cleaning, cooking, etc.) instead of directly caring for your mother while you are there. Allow him to make some mistakes on his own. He needs to learn. Yes, this may cause your mother to become more agitated at times, and you will have to use your best judgment as to when to step in to assist. But in the long run it might help to reduce the friction in your current relationship with your father.

Since your father is resistant to reading books, try encouraging him to join a caregiver support group in your area. Usually I would recommend that you attend with him, but in this instance he might be better served to go by himself. He may, for example, want to talk about his frustrations with his wife's disease, and there are things that he may not want his daughter to hear (in some instances, he may find it easier to talk to complete strangers than to his own family). Alternatively, perhaps your father would be more amenable to watching a video, instead of reading a book, on caregiving tips and/or about how Alzheimer's disease can affect peoples' lives. Videos such as these can be found on our website, on the internet, or at your local library.

And although it may seem counterintuitive, you might want to consider hiring a professional caregiver to assist with your mother's care. Even with all the help you provide it is possible that your father may still feel overwhelmed. It is conceivable that your father may respond better to a hired caregiver's advice than to your advice when it comes to dealing with your mother's care. Along these lines, you can also try talking to your mother's physician about the issue. Hearing the same suggestions that you have made, but instead coming from a medical professional such as a doctor or nurse, might be more helpful in getting information through to your father than anything else.

It is also possible that your father may be suffering from mild depression. Encourage him to schedule a check-up with his regular physician "just to make sure everything is okay. "After all," you can say, "you need to be in good health yourself if you want to be able to take good care of mom."

Finally, if all else fails it may be necessary to set up an intervention for your father with all of your family members. The point of the intervention would be to emphasize to your father that although his wife's disease is indeed real and debilitating, there is still a person in there and she needs his care and understanding more now than she ever has before. Your entire family may be better able than you alone to impress upon your father the importance of how his behavior needs to accommodate his wife's condition. Good luck and stay positive.

The only way your siblings will ever truly get a clear picture of what your father is going through is if they spend a whole weekend with him (or at the very least an entire day). Many Alzheimer's disease (AD) patients are quite adept, particularly in the early stages of the disease, of acting "normal" around friends and family such that no one realizes there is a problem. This is one of the reasons AD can go undiagnosed for long periods of time in some people. So it is not surprising that your siblings might not think anything is wrong with your father, because the limited interaction they have with him in phone conversations can make it seem as if your dad is completely fine. Your brothers are likely still experiencing denial over your father's diagnosis, which can lead to resistance to escalate his care management. If they had read the literature you had sent, they would likely recognize their folly. This is why your brothers really need to witness first-hand what is going on with your father in order to get a full appreciation of the disease, how it currently affects him, and how it will affect him in the future.

It sounds as if you are doing very well in managing your father's current care and planning for his future care. With Alzheimer's disease, it is never too soon to make decisions for events down the road. Plans can always be rethought and changed as situations change, and it is often easier to modify an existing plan than to come up with an entirely new plan each time something crops up. If your siblings cannot reconcile their differences about your father's care, you can always remind them that you all just want the same thing: the best possible care for your father. Remind them also, as you stated above, that everyone should have your father's well-being as his or her primary focus.

It is not uncommon for Alzheimer's disease (AD) patients to completely forget that they have eaten (or forget to eat entirely). Patients sometimes can no longer interpret signals from their stomachs, and therefore do not know whether they are hungry or full. A visual reminder such as a large schedule posted next to a clock might be helpful. On it you can list the entire day's agenda: meals, activities, bathing or toileting times, rest times, appointments, bed time, etc. A regular schedule clearly visible to the patient can help to decrease anxiety and frustration, because the patient knows exactly what to expect at any given time throughout the day. And when your uncle says he hasn't eaten, you can then refer to the schedule and remind him that he has already had his meal. Finally, because a patient's overall appetite might be altered as a result of the disease, it is also sometimes helpful to serve several smaller meals and/or snacks throughout the day rather than the standard three meals.

A steady routine and the encouraging and accepting support of familiar people helps individuals with dementia respond optimally to everyday stresses. For this reason, it's often optimal to keep a person in a familiar environment. But keep in mind that the familiar environment may not be adequately prepared to protect a patient who falls, is aggressive, or engages in risky behavior. Further, the familiar environment may lack supports and optimal stimulation. In situations where an alternative environment supplies these important protections and supports, there can be advantages to moving from a more familiar setting.

The only proven way to slow the cognitive decline of another person with Alzheimer's is by giving the patient a cholinesterase inhibitor drug and/or memantine. These medications are FDA-approved drugs for the treatment of Alzheimer's disease and can be effective in some patients by slowing the progression of cognitive impairment. Read more about Alzheimer's disease risk reduction and prevention, and the currently approved medications.

This is a tricky question actually, and one that is often encountered in the medical research community: does a person with dementia have the capacity to provide informed consent? The simple answer is that it depends on the situation. Patients with early- to mid-stage Alzheimer's disease might still have enough of their faculties to advocate for their own care, however, this ability diminishes as the disease progresses. Therefore, it is wise while the patient is still in the early stages of the disease to draft a health care proxy appointing another individual (often a spouse or child) with the authority to make medical decisions on the part of the patient.

In general, most assisted living facilities would probably be amenable to discussing the basic care of their residents with the resident's family or an ombudsman. Depending on the situation, it may or may not be ethical (or legal) for the facility to discuss the specific care of a particular patient. This would be determined on a case by case basis.

One last thing to keep in mind is that because of the nature of Alzheimer's disease, you cannot always trust that information provided by a patient will be entirely accurate. In this case, the person with Alzheimer's disease who stated that he had not eaten may have been mistaken. Patients with Alzheimer's disease can forget that they have eaten a meal, even if the meal was just served and consumed. Patients sometimes can no longer interpret signals from their stomachs, and therefore do not know whether they are hungry or full.

As Alzheimer's disease progresses, it is not uncommon to observe patients taking more naps or sleeping for longer periods. Alzheimer's disease can affect a person's circadian rhythm (sleep/wake cycle), so a person may sleep more during the day instead of (or in addition to) at night.

Regardless of your good intentions, most people would generally not like to be accused of having dementia. First, it really depends on who the person is and your relationship with this person. If it is your spouse, close family member, or close friend, then you should be able to talk candidly with them, and to let them know that you concerned for their health. You can say that you would feel much better if they would go in for a medical check-up just to make sure everything was okay. You probably should not mention “dementia” at this point, because you do not want to unnecessarily scare or anger the person.

If the person is a co-worker or causal friend, then unless their cognitive impairment poses an immediate and real threat to their own safety or the safety of others (in which case it may be prudent to mention something to the person's supervisor, spouse, or other relative), it might best to just ask how the person is doing. You can tell the person that you noticed an odd behavior and say that you are concerned because this is not characteristic of them. It would also be helpful if you can provide a specific example of their unusual behavior. Give the person a chance to explain themselves. Sometimes stress, sleep disorders, depression, drug interactions, or other medical ailments can mimic the symptoms of dementia. Without the benefit of a physician's thorough medical and psychological evaluation, it is difficult to make a medical diagnosis of Alzheimer's disease or other dementia. Finally, if the person is not a close acquaintance, the best you might be able to do is to casually remind them to get regular medical check-ups.