Tuesday, April 21, 2009

Some Things to Remember When Caring for a Loved-One with Dementia

1. Remember that they forget. No matter how many times your loved-one asks a question or mentions a subject, for them it is the first time. Often when we are driving somewhere, my mother will ask where we are going. I immediately tell her and an entire discussion about it will ensue. Finally, she will fall silent, and after approximately twenty seconds, she will start the cycle again with where are we going. If I try to get her to remember what we just said, she will struggle with it and make a guess. Sometimes she will come up with a wild guess, like we are going to the train station. Sometimes she will tell me that I never answered her when she asked before. The point here is that she honestly can’t access that information in her brain. Either it didn’t get stored or it can’t be accessed. Like a computer with no memory, there is only room for active files. Once the file is inactive (the silence) the file is dumped. So there is no point in getting irritated that you just told them something, for them it is the first time.

2. Familiarity breeds familiarity. When your loved one is in familiar surroundings, they have an easier time remembering certain things. Right around the time my mother started to show signs of dementia, she and my dad moved across country from where they lived for thirty years. Even though they brought all their furniture and belongings, it was an unfamiliar setting. Then when she started really losing all her short-term memory, they moved again, to a house near me, and I moved in with them. We have been here for six years, but Mom still finds the place strange. I point out her coffee table that she tiled by hand forty years ago and she wants to know how it got here to this unfamiliar place. I tell her that all her belongings are here and point them out to her and it helps her orient herself. I also find family photos and other familiar objects such as family heirlooms helpful. Sometime ago, my mom recorded stories about her life; things like growing up, meeting Dad for the first time, working in a factory during the war, getting married, and so on. We wrote all those stories down, along with other family history and put them in a loose-leaf binder. She reads these stories occasionally and can remember these things.

3. Have a routine. Get up at the same time, go to bed at the same time, keep clothing in the same place all the time, a favorite teacup used every day, slippers in the same spot. This kind of routine is comforting but it also becomes rote. I find that my mother has a limit to how much she can remember, so the more she has that is automatic, the less she has to try and store in her dwindling memory bank. And a routine is familiar and comfortable. There can be quite a lot of anxiety with dementia, so a familiar routine can feel safe.

4. Make the environment safe. A person with dementia may not be capable of making good decisions or may not be aware of potential dangers.

~ Get rid of the teakettle that sits on the stove. Use an electric one with an automatic shut-off. Your loved-one will be less likely to boil it dry, scald themselves or catch a sleeve or dish towel on fire.
~ Replace the locking doorknobs on the bedroom and bathroom doors with simple latching knobs, also called closet knobs. If your loved-one locks the door and then falls or has a medical emergency, it can have a bad outcome.
~ Put alarms on all exterior doors. A very inexpensive alarm can be purchased at most hardware or home centers. It emits a loud whistle if the door is opened. This will prevent your loved one from wandering off, undetected.
~ Consider getting a locator device (Granny Lo-Jack) or other such monitored safety devices.
~ Install a voice-activated baby monitor. If you are a sound sleeper like I am, you will want to be available if your loved-one falls or becomes ill in the middle of the night.
~ Install smoke detectors and carbon monoxide detectors and have fire extinguishers available. Plan an escape route in case of fire.
~ Make sure that all your electrical outlets in the kitchen and bathroom have ground-fault interrupt circuits. This will protect from accidental electrocution around water.
~ Keep all medications away from your loved-one and dispense them as needed. Before I moved in, my mom would make many mistakes with her meds, taking more than the proper dose or forgetting to take her pills at all.
~ Lock the exterior doors and windows at night.
~ Put plenty of handrails in areas where your loved-one may fall. Remove small rugs and other trip hazards, and make sure the floors are uncluttered. Get a shower seat and a handheld shower head.
~ Make sure that you answer the phone in case a telemarketer calls. My mom is a friendly person, even with dementia. When someone calls, she will tell them all kinds of things and is completely unaware that the person may be scamming her. We recently received a bill from an out-of-state attorney for a class action suit against a drug manufacturer. My mom had never even taken that particular medication but had agreed to hire the attorney when they called. I am still unclear how they got our number. The same rule applies to answering the door.
~ Don’t leave your loved-one unattended. Not even for a second. I once dropped off my mom at the door of the doctor’s office building and told her to wait for me in the lobby while I parked the car. She got on the elevator and it took me twenty minutes to find her in the four-story building.

5. Good health equals good brains. Obviously when your loved-one is older, there are necessarily some health problems. But all the things that make a body healthy also help make a mind healthy.

~ Give your loved-one good nutritious food, low sodium, low fat, low sugar, lots of fresh fruits and vegetables, low-fat proteins, whole grains. Nutrition has a direct effect on some types of dementia. Supplement their diet with a quality multi-vitamin.
~ Get lots of exercise. Obviously if your loved-one is wheel chair bound or bed-ridden, exercise is problematic. Ask you doctor or therapist for exercises that your love-one can do. Setting a good example and exercising along with them is healthy for you, too.
~ Let your loved-one get plenty of sleep, but not too much. Time naps for about an hour. Sometimes other health problems can interfere with sleep patterns, so allow for lost sleep at night with daytime naps. Maintain a routine bedtime and wakeup. And create a routine around sleeping, such as changing incontinence pads, putting on pajamas, taking bedtime pills. I find that if the evening is tranquil, my mom has fewer problems with confusion at night. If there is a violent or noisy program on TV before bedtime, she is more confused and has a difficult time getting to sleep. Talk to your doctor about some safe sleep aid options such as Benadryl, Melatonin, valerian, or chamomile.

6. Label things. I found that if I post reminders for my mom around the house to some of her commonly asked questions, she can refer to these in moments of confusion. On the lampshade near her favorite chair, I posted a note in large typeface so she can read it without her glasses. Because she doesn’t recognize this house, it says, “Mom, You and Dad bought this house and moved in with all your belongings six years ago. This is Largo Florida. I live here with you and take care of you. Love, Anne.” I wrote the names of the people in family photos on the back of the picture. I got her a TV remote with very simple, very large buttons. And I simplified the choices of channels on the TV. I deleted or blocked home shopping channels, Spanish language channels and sports channels. We have nearly one hundred channels to choose from and it was confusing for her, so we opted to narrow her choices.

7. Stimulate the mind. Alzheimer’s researchers have learned that the brain is a use it or lose it organ. The more a person uses their brain, the more brain they will continue to have available.

~ My mom still enjoys reading. She has a difficult time reading long and involved text because she can’t remember what she just read. But short stories, poems, magazine articles and other sorts of writing are easier for her to read. One of the best magazines out there for someone with dementia is Reader’s Digest. There is a good mix of subjects, lots of short and humorous items and if she loses her place, she can pick it up and proceed and still find something of value. While my mom does watch TV, I try to find other things for her to do if possible. Television watching is a passive activity and can actually have a deleterious effect on cognitive function. So keep TV to a minimum and opt for things that will stimulate thought, like news, comedy, music, nature programs and sports. My mom especially enjoys the funny video type programs. I think laughter is healthy for everyone.
~ More than reading, a dementia patient can benefit from other kinds of stimulation. One of the best ways to stimulate the brain is by learning and memorizing new information; the process of learning a new language, for instance. However, if the memory is faulty or damaged, this can be an exercise in frustration. Nevertheless, your loved one can learn other simple things, such as the words to a song or poem. Repetition can help the brain create new pathways and connections.
~ Problem solving is the next best brain exercise for dementia sufferers. Simple things like supervised cooking can preserve what memory is still functioning, and it can be a bonding moment that will stay in your memory, too.
~ Doing things with the hands such as crochet, embroidery, art activities, building models or repairing machines can keep the mind active. Also fishing, tossing a ball, or other activities that use motor skills. But of course, stay safe, only use power tools if your loved one is used to them. I find that ironing clothes or even folding clothes is an activity that is low stress but can stimulate the hand-eye coordination.
~ Puzzles, games, conversation with new people, museums, trips to unfamiliar and familiar places are all stimulating. My mom comes alive when we go out and have a simple cup of coffee at a restaurant, especially when there is a waitress, someone for her to interact with. Some people like to play cards or board games. Chose activities that don’t have a lot of rules. Some excellent games on Wii use the mind and body, even though the consol can be expensive, the return in increased activity and brain function may be offset.
~ Attendance at a place of worship is also important; there are aspects of the familiar setting and of a new event with a visit to church, synagogue, mosque, or whatever.
~ Consider the option of using medication to help your loved-one. Some have proved effective. Some do have side effects. Also be aware that these medications can be expensive, and probably won't reverse the course of the dementia but only slow its progression.

7. Be aware of sundown syndrome. This is a particular phenomenon with dementia patients, referring to how they often become more confused at night, and will seem to lose whatever gains they may have made during the day. I also noticed that some of the things that were happening just before bed would stay in my mom’s mind. If she was reading about her trip across country in a train when she was in her twenties, she will think the house is a train station, and wants to know if I will wake her up when her train arrives. She also loses track of who my dad is at night, and often won’t recognize him. I have caught her on her way out the door with her clothes on and her purse tucked under her arm, on the way to catch a bus. All kinds of things happen in her mind after 6pm.

8. Keep explanations short and simple. When Mom thinks she has to catch a bus or that she is sleeping in a train station, it is usually easier to reach her logic than convince her she is wrong. So usually, I will show her the clock and say, “Well it is nearly eleven at night, stop right now, it is time to sleep. We will worry about all that stuff in the morning.” Or if she is debating with me whether she needs a doctor’s visit, I don’t go into literal specifics of why she needs to see the doctor, I just tell her that this is a follow up visit and that he is keeping her healthy. Since much of a person’s ability to think logically is based on storing facts, some simple and general facts may be easier to grasp than specifics. And since a long explanation might be harder to remember, I keep it short and to the point. When Mom forgets that we live here, my dad wants to tell her a narrative detailing the significant events of the last six years, but this just confuses her more. Just stating the fact, you bought the house six years ago, and have lived here ever since, is enough.

10. Take time for yourself. If you are cranky, tired, or ill, it can be much harder to cope with the challenges of caring for your loved-one. You must take care of your-self, too.

~ Find someone to give you respite care, and find something that stimulates and refreshes you. Whether it is engaging in a hobby or just going for a walk, take a moment to get away from the stewpot that is your life and breathe.
~ Maintain your physical and mental health. If you are tired and run-down, you will have a harder time coping with all the stress and anxiety. And exercise is a good way to relieve stress.
~ Find a support group, whether it is with family-members, or a moderated formal group, find someone to share with and talk to.
~ Don’t try to do everything. Sometimes, with all the needs and demands of a loved-one with dementia, it is easy to start feeling like a hired hand, or a drudge. But this is your family. Let the dishes go, vacuum less, dust only under duress, and spend time with your loved-one. Or even better, get them involved in the housework and do things together.
~ Give yourself a break. Don’t expect that you will never make a mistake. You are a hero for being there for your loved-one. It might be easier to just put them in a home and visit on Sundays. But you would be missing out on some very rewarding moments. You chose to be there for them and help them. So when you lose your mother in the doctor’s office building or snap at her for asking that same question for the hundredth time, remember that you are human and are doing the best you can. The beauty of dementia is that all the hurt feelings and resentment are washed away. It is impossible for them to hold a grudge. They can't remember what they were mad at you about. So the only one holding on to that shame is you. Let it go.


Lily said...

I SOOOOOO wish I'd found your blog sooner! I could have saved a lot of misunderstanding! Thanks for the good advice x

Mike said...

What a great post. Thanks

Knitting Cyclist said...

This is such an informative post.

I came across your blogs while doing research for a project I'm doing at school.

I am a student at Ryerson University and I'm trying and determine if there is a need for technological (either web or mobile) solution that could improve quality of life for the caregiver by organizing some of their responsibilities. Currently the focus is on three main pain points: coordinating tasks among a network of caregivers, managing medications and tracking symptoms.

Based on your experience as a caregivers I was wondering if you'd be open to having a discussion about this initiative through email or telephone. Please let me know.

Thanks for your time.

Meagan Blais