Alzheimer's in Your Friend's Family And What You Can Do to Help

If you have a friend whose family member has been diagnosed with Alzheimer's disease, here are some things you can do to help. My best friend's grandmother was eventually diagnosed, and I have other friends whose mothers have come down with it. It is often women who have to deal with Alzheimer's because women live longer than men, women are often the care-givers of older relatives, and women, for whatever reason, may be more attuned to other people's needs and problems, but these issues can apply to anyone.

Often the adult children of people with Alzheimer's love their parents and feel terribly disappointed in themselves when they can't manage the necessary care by themselves. I have tried to help my friends by getting them help, by encouraging them to ask for help, and by reminding them as gently as possible that they are only human and cannot fix what cannot be fixed.

Tell your friend to be Unrealistic. First, don't assume it's Alzheimer's without checking to be certain. There are a number of illnesses that mimic or can be mistaken for Alzheimer's (notably, simple depression), and some of them can easily be treated. If the person has already seen a doctor, get a second opinion. Sometimes doctors are not familiar with the variety of neurological difficulties that can present themselves, and sometimes they just don't care. Even if the person does have Alzheimer's, there are some drugs that can slow down the progression.

Also the person's health, both mental and physical should not be neglected just because they are "old" and "failing" but also beware of unnecessary procedures or untried "remedies." My friend's mother was given a mastectomy when she was bedridden and didn't know who anyone was. Six months later she died and I wondered if this was really necessary. My friend wondered too. People deserve medical care but I wouldn't want anyone in my family to be used for medical experiments or painful and unnecessary procedures, just because they weren't able to say no. They should be polite to the doctors but be skeptical.

Offer your friend an outside view of the situation. In my friend's family, no one noticed how much difficulty her grandmother was having even though she had six adult children who visited her often. My friend noticed it when she stopped by to visit on her way home from college. She said that she found her grandmother was lighting the furnace by dropping lighted pieces of newspaper into it. The furnace had an electric thermostat and did not need to be lit by hand and this was extremely dangerous. There were other problems too, but they had developed so gradually that other family members who visited more often did not notice them. Other relatives lived right next door and probably saw her every single day, but they failed to perceive these difficulties. I have heard about several caring responsible adults who were unable to recognize that their parents were failing until there was some crisis. I think that the reason for this is that it is just so difficult to perceive when one's own parents are failing. One's parents represent the pinnacle of competence to their own children and many adult children simply cannot wrap their minds around the idea that their parents can no longer take care of themselves. My friend had a long discussion with her mother about what was going on, and then a family conference was called and a new plan was made to take care of the grandparents.

Get your friend into an Alzheimer's Support Group. This will help them take better care of their family member in two ways. One is that they will learn things that they didn't even know to ask about, just from listening to what other people say. In some cases, they will be warned in advance of problems to avoid. Because Alzheimer's develops in older adults, most of us have no experience with it, so we don't know what to ask or what to expect. And also your friend will receive some comfort and kind words from other people in the support group whose opinions she values. This diagnosis is devastating and people feel so sad when it is a parent, so any kind words will help, especially from people in the same situation.

People with Alzheimer's are often meticulous to hide their problems. They are embarrassed if they perceive it at all, and they often react with hostility to criticism of their judgment, which may be impaired. In some stages of Alzheimer's, there are personality changes and the person can become paranoid or hostile. Another friend's mother got lost one day and when they found her, she explained that it wasn't her fault she had gotten lost; someone had switched all the street signs around. As my friend remarked, "they get cagey." They sometimes get mad if someone tries to take the car keys away from them or asks them if they have paid their insurance bills on time. It is very painful emotionally for children who love their parents and feel terrible if their parents get mad at them.

This turns the parent's medical problem into an emotional problem for their children. One woman I know visited her mother regularly at a nursing home and was very distressed when her mother told her that the janitor at the nursing home kept changing the time on the clock in her room. My friend was very concerned about her mother's safety but she didn't have the distance on the subject to realize how absurd this was because she was so concerned about her mother. I'm sure janitors in nursing homes have better things to do than annoy the residents by changing the clocks in their rooms. Some communication between my friend and the nursing home management team would have cleared up the confusion. My friend would have felt better as soon as she realized that no one was tampering with things in her mother's room. She could then be sympathetic without encouraging her mother's paranoia. Another point is that even in the nursing home, no one had noticed this psychological problem in a resident. Don't assume the nursing home staff is paying attention. If you know someone in this situation, it can help to keep an eye on things and to offer some calm judgment on a subject where the people who are most strongly affected have trouble seeing clearly.

Be a support for your friend too, because they will need it. Even before they need 24 hour help, the children of people with Alzheimer's will need to take a break sometimes. If possible, volunteer to look after your friend's parent for a few hours so that they can go shopping or just get out of the house for a while. Encourage them to sign their parent up for adult day care, which can often be done on an "as needed" basis, that is, it can be scheduled one day a week or just occasionally. You might volunteer to make the phone calls to see what is available in the area. If possible, take your friend out for lunch or do something fun, because eventually they can become a prisoner in their own home. They need to be taken care of, too.

Eventually it will be necessary to hire full time help. My friend's grandmother, on one of her "good" days, when she thought she was six years old again, ran out of the house and tried to go to the church that she had attended as a child. She ran down to the road before anyone could stop her and got a lift from a truck driver passing by. The truck driver took her to the church and dropped her off, and she was found there within in an hour. The church is only one and a half blocks away from the house where she lived, and she was just fine. But when people with Alzheimer's go back to their "second childhood" as it is sometimes called, they are as fast as they were when they were children the first time and a child can outrun an adult. When the truck driver who had given her a lift was found, he was asked why he did it. "Because she asked me to," was his reply. He was a perfectly kind and gentle man, who didn't realize she had a problem but you can see how this might have turned out differently. After that, everyone had to keep the doors locked all the time, which means that the person with Alzheimer's cannot be left alone even for a moment.

Even if the children/caregivers can manage at the beginning, it will become more and more difficult, and eventually impossible to take care of their family member at home. At some point most Alzheimer's patients need care 24 hours a day. This isn't anyone's fault, but the children of parents with Alzheimer's often feel as if they are letting their parents down if they ask for outside help. Remind your friend that even professional nurses work for 8 hours a day and then they get the other 16 hours off (we hope). All humans, no matter how much they love their mothers will need to go to sleep eventually.

Get your friend a book or two on the Management of Alzheimer's. There are two kinds of books. Medical ones written by doctors give a better idea of the prognosis than anyone may want to know and but they also clarify the relationship between the patient and the medical establishment. The person's doctor should give one of the first kind of these books to the caregivers, but if they don't, I found a source of information like this on the net on the American Family Physician website . The information about Alzheimer's started on page 2263. This isn't warm and friendly but it does give the medical type of information very clearly and concisely.

The other type of book is more personal and gives advice from the point of view of ordinary people, especially the relatives of people who have Alzheimer's and some books give information from people who actually have Alzheimer's. The more personal kind of book should be in the self-help section of a bookstore, and they should have them at the local public library. I would recommend something but I honestly didn't like any of the books I looked at. The ones I looked through were condescending and kept suggesting that people not punch the poor sick person in the head. I think we all have that concept. Nevertheless, a book is good because some things are easier to read about than to hear directly from another person.

Be Realistic. Sad to say, Alzheimer's only gets worse. There will be good days and bad days, but the bad days will get worse and the good days will become more and more rare. Eventually, your friend will not be able to manage their mother on their own, and help can be expensive. It can require making changes in everyone's lifestyles in ways that they don't like and can't imagine. Even if you can't help, at least try to keep in touch with them.

Remind your friend to treasure the moments. Even as people fail and their personalities change, there are times when they show a special insight or ability which can be like a warm, sunny day in winter. My friend told me that she went to visit her grandmother one day when she could no longer remember who anyone was, but she could still play the piano as well as ever. They spent the afternoon at the piano, singing hymns together. Actually, it was the same hymn over and over, which was fine because my friend didn't know that hymn and so she learned it from her grandmother that day. She said that was the happiest she had ever seen her grandmother and it was her last clear memory of her.

Alzheimer's is terrible, and there is no way to make it good. But if you have a friend with a diagnosis in the family, be kind to them, visit them often and be a listener for them. Sometimes a clear head or just a soft word can help them find their way out of the dark hole that they may feel they have fallen into.