Caregiving Questions

Taking care of a loved one with Alzheimer's disease can definitely try your patience at times. As you have said, you need to keep in mind that your husband cannot always control his behavior and remind yourself that what he does is not purposely meant to annoy you. Most likely, he follows you because he is confused and feels very insecure—he may feel anxious and vulnerable when he cannot see you. Patients with Alzheimer's disease often live in the now. They sometimes cannot remember what happened only moments earlier (such as where they were or what they were doing), and this is can be a source of great confusion and anxiety. Therefore, your husband’s behavior may simply be an attempt to provide a bit of continuity in his life, a sort of visual anchor. He knows you, he trusts you, and you make him feel safe. So if you start feeling annoyed again, try to remember that by letting him follow you around, you may very well be providing him with a source of comfort.

It sounds like your brother is a very patient and trustworthy son (please praise his efforts every chance you get). Since your brother has Power of Attorney over your mother’s affairs and control over her financial accounts, there may not be anything too detrimental that the boyfriend can do as far as finances are concerned. That being said, however, it may be a good time to review all of your mother’s financial holdings and make sure there is no way that her boyfriend can obtain access to her possessions.

You may also want to assess her current living situation. Is this boyfriend acting as her caregiver? Does he actually take good care of her (such as helping her with daily activities, helping with household chores, grocery shopping, running errands, preparing meals, etc.)? If he is in denial about her condition, then I would suspect that he does not support taking her to a doctor to receive proper medical treatment for her dementia.

What is best for your mother is that she is in an environment in which she is safe from harm (physical, psychological and financial) and is provided with good care. The further her disease progresses, the more difficult it will be to convince her that she may need more help than what her boyfriend can provide. The confusion caused by dementia can make patients misunderstand people’s intentions, and therefore they may believe that someone is trying to hurt or steal from them when in fact that person is trying to help them. The boyfriend may be playing into your mother’s fears and paranoia—fanning the flames in a way. In this respect, his presence may be hurting more so than helping your mother’s well-being.

Therefore, if your mother is a candidate for assisted living, then this may be a good option for her at the moment. The facility can keep a closer watch on her and, depending on the specific facility, may not allow her boyfriend to live with her (particularly if you express a strong opinion as to why you do not believe it is beneficial to her health). It will not be easy to convince her about the move. In fact, you may never fully convince her and it may end up being quite an ordeal. This being the case, you might try one last attempt to reason with her boyfriend and convince him that sending your mother to an assisted living facility is really for her own good. If he truly cares about her, then he should recognize this as being in her best interests.

In the meantime, if you suspect or have evidence that your mother’s boyfriend may be trying to take advantage of her financially, then you may want to at least alert the police in her area to let them know what is going on. Perhaps her boyfriend has a history of elder abuse, perhaps not, but at least the law will be put on alert if any future incidence does happen.

Because Alzheimer's disease progression can vary widely from person to person, it is difficult to say if your husband’s case is outside the realm of “normal.” How fast the disease progresses depends on a number of factors, such as the age at diagnosis, the severity of the disease at the time of diagnosis, and (as you alluded to) whether or not the patient has any other medical conditions. It is possible, for example, that your husband may have had several mini-strokes since his Alzheimer's disease diagnosis which went unnoticed, and the cumulative effect of these strokes may have served to hasten Alzheimer's disease progression. Poor circulation due to diabetes, cardiovascular disease or obesity may complicate the issue too. Infections of the brain, such as meningitis or encephalitis, or tumors in certain brain regions can also cause dementia-like symptoms to worsen. Additionally, if your husband suffered any recent head injuries, this may have served to accelerate disease progression as well.

Contact your husband’s doctor and tell her your concerns. Try to relay as much specific information as possible, such as approximate dates that you noticed a significant change in his behavior and anything else that you might suspect is medically relevant (a high fever or chills, a drooping of one side of the face, slurred speech, muscle tremors or sudden muscle weakness, etc.) It is certainly possible that an unrecognized underlying medical condition may have contributed (or may still be contributing) to your husband’s quick decent. The doctor should be able to test for any obvious culprits and determine if there is any treatment that can help.

If you ever want to move your parents, now would be the best time to do it while your father is still in the early stages of the disease. While it is possible to move them later, it may also be more difficult and your father may have a longer period of adjustment. Even if they object to the idea at first, taking your parents into your care in your home will be hugely beneficial for them in the long run. They will have a dedicated, loving care provider living with them full time. In their present home, it sounds as if finding such help would be very difficult if not impossible. Their only other alternative would be to live in an assisted living facility. Living with you is definitely the most attractive (and most practical) of the options.

Talk to your parents about them moving in with you and really try to “sell” them on the idea that it will be much easier and more enjoyable for them. For example, meals will be prepared for them each day and they will no longer have to clean the house, do laundry or work in the yard. Start the talking process now, as you may have to have several conversations about this with your parents. Try to get your siblings to back you up on this and voice their support for the move. You will probably also need your siblings’ help when it comes to packing up your parents possessions, deciding what to do with their excess furniture and belongings, and potentially selling their home.

In the meantime, try to get recommendations for geriatric specialists in your area who would be willing to take your parents on as patients. This way, your parents will have doctors already lined up as soon as they arrive.

The symptoms you list, such as confusion, mood swings, and memory deficits, are all symptoms of Alzheimer's disease. But before you jump to the conclusion that your mother has Alzheimer's disease, please be aware that there are other medical conditions that could explain her recent behaviors. For example, early dementia symptoms such as confusion and memory problems can also sometimes also be caused by hypothyroidism (failure to produce sufficient thyroid hormones) or a vitamin B12 deficiency—both of which are common in the elderly and both of which are treatable. Confusion, mood swings and memory impairments can also be caused by stress, depression, brain injury, stroke, interactions between medications (or side effects from a new drug), and viral infections. A thorough physical and psychological examination can help to determine what may be causing the behaviors in your mother.

Your mother may be in denial, which may be why she gets angry when you talk about memory problems. It is very important that you get her to a doctor for a thorough examination. She will probably resist this idea, so make an appointment for her with her primary care physician and do what is necessary to make sure that she meets with the doctor. The sooner she has a medical evaluation, the sooner it may be possible to get therapy for her. If she does have Alzheimer’s disease, many of the Alzheimer's disease medications, when taken early on, may help to slow the progression of cognitive impairment.

Routines are definitely important to an Alzheimer’s patient, and a move to a new facility can be a disruption to this routine in and of itself. During this time, the patient may become stressed or agitated, and a familiar presence (such as yourself) in their new environment may help to ease the transition. You will have to take your cues from the patient and the staff. If possible, try visiting everyday before the move and then again for a few days after the move. In addition to your own observations, ask the staff about the patient’s behavior before and after your visits: does it seem to improve their mood or is there no noticeable change in attitude or behavior? Once the patient seems adjusted to the new facility, then you can gradually transition back to your regular visiting schedule.

Alzheimer's disease is dementia, one of the most common forms of dementia in fact. However, only after thorough physical and psychological examinations will a doctor will be able to tell whether their dementias are of the Alzheimer's type. Knowing whether or not the dementia is caused by Alzheimer's can be valuable in two ways. First, as part of the examination, the doctor will test for common causes of dementia in the elderly, such as hormone imbalances, vitamin deficiencies, viral infections, strokes, etc. Some of these causes of dementia are actually treatable.

However, the doctor may find that none of these conditions are the cause and that the dementia really is due to Alzheimer's disease. If this is the case, then an Alzheimer's diagnosis may be of value because it will allow your parents to be treated with the appropriate medical therapy. Many of the Alzheimer's disease medications, when taken early on, may help to slow the progression of cognitive impairment.

And depending on where your parents live, with an Alzheimer’s diagnosis, your parents would be eligible to participate in clinical research trials for new therapies, if they are so interested. If nothing else, sometimes just knowing the name of the disorder you are dealing with can be helpful, if only because you now can call it by something concrete.

And as your father’s destructive habit, you can try hanging signs on the trees reminding him to not snap the limbs off. You could also try wrapping the tree’s lower limbs with garden netting so that that the limbs are not as easily accessible. These approaches may help to deter your father, but will probably not stop the behavior. Unfortunately, the only way to prevent him from breaking limbs off the trees is to constantly watch him and, if you see him going for the trees, distract him with a new activity that will keep his hands busy. He may find the feel or the sound of the wood snapping soothing in some way, so try to think of different activities that incorporate these elements. Shelling peas or peanuts, sorting metal gadgets into bins, breaking up dead branches for kindling or compost, shredding paper, woodworking (if he is capable), or even drumming to music are some suggestions—be creative based upon your knowledge of his likes and dislikes.

Unfortunately, this is just the nature of Alzheimer's disease—patients must be constantly reminded of certain facts or events because their short-term memory is impaired. One thing you might try is to make a “shrine” to your mother somewhere highly visible in your father’s house. The shrine can include a picture of your mother with the words “In Remembrance” and the dates of her birth and death printed on the picture frame. A picture of her gravesite, funeral urn, or memorial plaque may also help, as might a clipped copy of her obituary or program from the funeral. A display such as this should help to provide a visual reminder to your father of his wife’s passing. You can also start a new routine by having your father help you select and place fresh flowers in a vase near the display for your mother and replacing them every few days or so.

Beyond anything else, be sensitive to your father’s emotions. Perhaps a daily reminder that his wife is gone will be too much for him to tolerate. If he seems at all upset or agitated by a “shrine” or other visual reminders, then respect his feelings and remove the items. It is not worth it if it causes him to become greatly distressed. Alzheimer's patients often confuse the past and present, particularly when it comes to comprehending who is or is not still alive. Albeit disturbing to patient’s family, this is perfectly “normal” behavior for the patient. So if a visual reminder only serves to trouble your father, then all you can do is to gently remind him that your mother is gone and then change the subject so as not to cause him undue stress.