If your loved one has withdrawn from social occasions, should you force them to interact with friends? [ 06/22/12 ]
Social contact and connection are valuable aspects of the support process that can be offered to people with Alzheimer's disease, but don't push so hard that the loved one's experience is made painful or your efforts will backfire. Also remember that for you, too, it's important to maintain social connections. Caregivers are at risk for isolation and depression!
My mother was 35 years old when I was born, and now I am 57. My mother's mom, my mom, and her brother have all had Alzheimer’s disease. Now my oldest sister, who is 74, has the disease as well. Is it still just a wait and see disease or are there tests to determine if someone is in the very early stages? Maybe I could be studied so that my kids do not have to experience the very sad demise that my family members have experienced. Thank you for your input. [ 06/21/12 ]
A recent statement from the Alzheimer's Association and the National Institute on Aging suggested that we should think of Alzheimer's disease as having an early stage in which the brain is increasingly affected but no cognitive changes are yet noticeable. It is likely that neuroimaging and other biomarker tests will soon help us identify people in this stage, but that very early detection is not yet a part of standard assessment.
Alzheimer's disease is a complex disorder, for which there is currently no known prevention or cure. Some research has generated hope that one day it might be possible to slow the progression of Alzheimer's disease, delay its symptoms, or even prevent it from occurring at all. Although there is preliminary data to support the benefit of some interventions, such as physical activity and cardiovascular risk reduction, nothing at this time has definitively been shown to prevent Alzheimer's disease or other dementias. You and your treating clinicians may want to keep an eye out for clinical trials recruiting families such as yours for early screening and intervention.
My mom has been diagnosed with Alzheimer's since 1999 and is now in a late stage of the disease. Due to a life of sun exposure, mom has numerous skin cancers. We recently learned she has two squamous cell cancers and two basal cell cancers. At this point her life she does not comprehend what is happening to her. The doctor wants to remove the skin cancers and do additional biopsies on some other suspicious areas. How much should we put mom through with regard to the skin cancer diagnoses? [ 05/16/12 ]
Many Alzheimer's patients have additional diseases that are found among older adults. The diagnoses of osteoporosis, arthritis, coronary artery disease, hyperlipidemia, hypertension, cancers, and other disorders often raise the question of how aggressively to investigate and treat. Taking into account the stage of your mother's dementia and the severity of her skin cancers, you may be able to decide the best way to proceed based on two important considerations:
- What choices do you think she would make if she did comprehend the situation?
- How does the discomfort of treatment compare to the discomfort that might be caused during your mother's remaining years by untreated skin cancers?
For some, the decision to withhold treatment of slowly-progressive and minimally painful conditions is appropriate given the progressive nature of Alzheimer's disease.
Is autism related to Alzheimer's disease? [ 05/16/12 ]
Although some observers have noted shared behavioral characteristics between Alzheimer's disease and autism and postulated that there might be a connection, the evidence for this does not appear to have been forthcoming.
My brother has Alzheimer's disease. He has fallen asleep and they have been unable to wake him up. Is this a common occurrence with Alzheimer's patients? Since I have two brothers who suffer from this disease, am I at greater risk of getting this brain disorder? [ 05/16/12 ]
Alzheimer's disease (AD) does indeed affect sleep patterns, but your brother may have separate or additional problems with his sleep that could be addressed. Medications, too, can sometimes account for excessive difficulty awakening. Please consider seeking the advice of a sleep specialist. And, unfortunately, the presence in your family of two brothers could double or triple your risk of developing AD, though your risk is increased less if the onset of their illness came later in life.
I provide care for my uncle. He will swear he hasn't eaten even if he just ate less than two hours ago. How should I handle this situation? [ 05/02/12 ]
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.
My mom has Alzheimer's. I'm the only family member who assists my dad with my mom's needs. I spend four days a week and every other weekend at their home. I'll do whatever I can to be there for them. The problem is that my dad fights me on every suggestion I offer. He doesn't want anything to change their lives. I observe what triggers my mom's behavioral problems and what makes her agitated. Some of the solutions are often simple ones, but my dad isn't open to my suggestions. This situation makes things more difficult and more frustrating than it has to be. His time with my mom is very difficult and very wearing on him. I tried giving him books about the disease but he doesn't read them. I was hoping that he may learn by example and watch to see what I do for mom to keep her calm, but that doesn't seem to work either. He wants to continue doing the things they once used to do together. My mom has no interest in these things anymore. Do you have any recommendations? [ 05/02/12 ]
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.
Two of my male siblings seem not to accept our dad's Alzheimer's diagnosis and resist my suggestions for getting more support for him. He lives alone and is in decent physical health. He sounds like his "old self" on the phone, so it is easy for them to pretend nothing's wrong. I've sent books and online articles to help them understand dad's diminishing ability to function independently, and to help them understand the bigger picture of attending to his practical, emotional, and social needs. They say we need "consensus" on decisions such as getting more in-home care. I have dad's power of attorney and will make the best decisions I can, with or without their consent, which I doubt can ever be reached. We've already been through a few incidents that were "red flags." Do you have any advice for helping my brothers to understand their emotional resistance, to learn about our dad's diminishing cognitive function, and to focus on his practical needs? [ 05/02/12 ]
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.