Joy A. Glenner
Page 9
Goals
• to make it possible for the person to dress him- or herself for as long as possible
• to help the person maintain dignity and self-esteem
• to allow for the person’s personal preferences as much as possible
• to reinforce the person’s sense of comfort and safety
Problems Meeting Goals
The person may:
• not recognize body parts
• not recognize what an item of clothing is or how to put on a specific type of garment
• forget that he or she has already put on a specific type of clothing and put another one on also (this type of “layering” is very common)
• dress inappropriately for the weather (watch for dressing too warmly due to layering in hot weather)
• not like someone else handling his or her belongings or, if undressing, may think you are taking his or her clothes
• not accept help because he or she is uncomfortable dressing and undressing in front of you or is embarrassed about needing help
• refuse to dress because it looks complicated and overwhelming
• dress in clothing that doesn’t match
• want to wear the same thing every day
Approaches to Try
• Allow plenty of time. Confusion, frustration, and irritability become more of a problem when you are rushing the person. Put yourself in his or her place. Dressing can be frustrating and irritating for anyone who is rushed. If the person is irritable, he or she may resist or even strike out at you.
• Be flexible. If no one else is around or it is “just family,” it is okay if the person’s clothes don’t match. What is important is that the person dressed him- or herself.
• Let the person choose how to dress. You will have to reduce the number of choices eventually. If the person cannot choose, try saying, “Here, this will look great on you,” rather than simply, “Put this on.” Stay positive and try not to make instructions sound like orders.
• When helping, cue the person in short, simple steps.
• Simplify garments. Choose slacks and socks instead of a skirt and pantyhose for a woman, for example. Avoid pantyhose and knee highs that are too tight and can cut off circulation.
• Lay out clothes in the correct order for dressing: underclothes on top, then outer clothing, then socks, then shoes on the bottom. With these extra cues the person may be able to dress on his or her own. If this doesn’t work, hand the person one item at a time.
• If your partner refuses to dress or undress, wait, use the short-term memory loss to your advantage, and then approach the person later.
• Remove off-season clothing from the closet.
• If your partner rummages or puts clothing in strange places, put only one or two choices in the closet or drawers at a time. Store the rest elsewhere.
• If the person has trouble hanging clothes on hangers, lower the rods or try adding one or two rods. Your partner can then fold clothes over the rods.
• Choose shoes that are easy to put on. Avoid shoes with laces but make sure shoes are secure. No clogs or open-backed shoes!
• If the person insists on wearing the same clothes daily, wash these clothes at night or have several identical outfits.
• Does the person want to wear daytime clothing to bed? As long as the clothes are not binding and harming circulation, allow it. It is okay for the person to change clothes at odd times, when he or she is in the mood, not just by a traditional schedule. Be flexible.
A few patients, women in particular, remain very conscious of dressing well. The person usually accepts assistance easily if it is needed because he or she is concerned with looking good in public more than with dressing by him- or herself.
Whatever pleases your partner and aids his or her self-esteem is of primary importance in this case—whether it be choosing clothes, dressing independently, or looking great.
Remember: Redefine your idea of success and pick your battles. If you have helped your partner to be fairly clean, dressed, toileted, and fed and the person is doing as much as possible on his or her own, you are doing an incredible job!
6 Keeping Busy and Enjoying Time Together
Goal: This chapter will provide you with ideas for keeping your partner functioning well. It will help you keep your partner content and busy with normal tasks of everyday life and will cover some activities the two of you can share and enjoy. An additional goal is to make life easier for both you and your partner.
Busy Is Better, for Your Partner and for You
Any task we do as part of daily life is an activity. Even sleeping is an activity. A therapeutic activity is one that benefits the person doing it.
Most AD patients can not stay physically and mentally active on their own. You, as the caregiver, must make sure that they stay active. Chapter 5 addressed how to keep your partner involved in his or her own personal care. The basic personal care tasks of daily life, called Activities of Daily Living (ADLs), are all activities (see chaps. 1 and 5).
Staying involved in his or her own care and in other therapeutic activities may help your partner in several ways. The person may:
• keep functioning at a higher level for a longer time if he or she is keeping mind and body active and using remaining skills daily (it is “use it or lose it” for patients with dementia)
• maintain greater self-esteem and interest in daily life because he or she is doing important, adult activities
• have fewer behavior problems simply because he or she has something to do
Even if it is an effort at first to plan activities and get them started, activities can provide you with the breaks you need. Without breaks you will feel stressed, and your health may suffer. You can get other things done when your partner is occupied.
Doing things together that you both enjoy will increase your quality of life. It may help you remain close. It will provide good memories, even though these years may be difficult. You will both benefit physically and mentally from sharing positive experiences.
Stimulation and Activities
Like the rest of us, your partner needs different types of stimulation each day to remain as healthy and alert as possible. Stimulation in this context means the benefit your partner gains from a specific type of activity. If the person does not have appropriate stimulation, he or she may develop excess disability. The person may decline in health and ability to function more rapidly than necessary.
Essential types of stimulation for your partner are easy to provide in a normal day. Don’t feel as if you have to plan ahead for all of them. It is hard to plan a day for a patient with dementia. The person can be alert and cooperative one minute but not the next.
Study the situation: Each evening for a few days review what your partner did that day. (The assessment diary mentioned in chap. 1 can help.) Ask yourself questions such as:
• Did my partner just sit or just pace most of the day?
• Did my partner sit alone with no one to talk to most of the day?
• Did my partner do nothing to occupy the time all day?
You may see a good mix of activities or an activity pattern that needs changing.
The important thing is variety in the types of stimulation your partner receives each day. Basic daily requirements are:
• maximum involvement in one’s own ADLs
• large-motor activities: things to really stretch the muscles, such as walking around, raking leaves, or exercising with you to an exercise video or to music
• fine motor activities: holding and moving things around with the hands and arms, such as looking at old greeting cards, folding laundry, or doing a jigsaw puzzle
• social/emotional activities: visiting with others, hugging a grandchild, stroking a pet (even an unaware, nonverbal person needs conversation and hugs)
• rest and “down time”—unfortunately, this is usually the easiest type of activity to do; if yo
ur partner rests too much during the day, however, he or she may not sleep at night
Strictly alternating types of activities is not as important as providing different types of activities throughout the course of the day. Try to vary or alternate as follows:
• active (moving around) and passive (without much movement) activities: for example, watching “I Love Lucy” (passive) followed by a walk outside (active); or doing a jigsaw puzzle (generally passive) then getting up to feed the dog (active)
• hard (cognitively demanding) and easy (relaxing, not demanding): for example, helping to make a cake (hard) followed by getting up to watch children play outside (easy, relaxing); or listening to music (easy, relaxing) followed by drying dishes (hard)
Remember that what is hard and easy for your partner will change with time. As the disease becomes more severe, what was once easy may become difficult. As problems with organization of movement (basic PALMER symptoms; see chap. 1) become more severe, staying active may be more difficult. Don’t eliminate types of stimulation, just modify them. For example, if the person begins having more difficulty organizing his or her movements, suggest a walk on the patio, not around the block.
Keeping an AD patient busy is hard work. You are doing a good job just keeping the person healthy and safe.
If you are frail or ill or unable to cope with your partner for some other reason, consider other options. Adult day care, friends or relatives, and a home companion or home health aide are alternatives to consider for help with your partner’s activity needs and care. No one expects you to endanger your own health while providing appropriate care to your partner.
Adapt Normal Activities of Daily Life for Your Partner
In addition to the ADLs there are other tasks we all do each day. These are more varied in the way we do them and more complex. They are called Instrumental Activities of Daily Living (IADLs). They include:
• housekeeping; work in the shop, garage, and outdoor areas (if applicable)
• doing laundry
• food preparation
• shopping
• using the telephone
• managing money
• using transportation: car, taxis, public transportation, and other types
• taking medication
Some IADLs work better than others as activities for a person with dementia. Housekeeping, doing laundry, and preparing food almost always work when adapted as activities. Activities that work for many patients, but cause anxiety or an obsession with the task in others, are shopping, using the telephone, and riding in the car. Taking medication cannot, of course, be adapted as an activity.
These activities work well because they are adult. Your partner will remember them from the past and know they are important household tasks. Even severely impaired patients often seem to remember doing IADLs and their importance. There are clear benefits for your partner to doing them:
• The person feels pride of accomplishment when finished.
• You have the supplies on hand.
• They are often things you must do anyway.
Be sure to allow plenty of time and simplify the task. Many of these tasks can be adapted and simplified to one or two steps. Because they are simple and familiar, often a patient needs only a little help.
Keep in mind that the goal of these activities is to give your partner adult, meaningful tasks and a sense of accomplishment. They are great for you because, once “engaged,” your partner may do them without constant supervision from you.
Be prepared. Examine the work area and make sure it and any supplies are safe. If your partner is “helping” you, remember that it may actually slow down your work. If it is a household task, realize that you may have to do it over discretely once the person is “finished.”
If the person enjoys an activity, let him or her do it repeatedly, even if it isn’t needed. For example:
• If your partner likes to dry dishes, rinse unbreakable dishes deliberately so he or she can dry them.
• In the fall dump leaves back in the yard several different times. This is often successful with men, because it is adult, helpful, and “manly,” and they are proud of their work when it is done.
Housekeeping
Housekeeping tasks are familiar to everyone. Try:
• Dusting. Do not use toxic chemicals. Avoid spray or aerosol bottles.
• Vacuuming, mopping, sweeping, using a duster.
• Rearranging books or unbreakable and safe office and kitchen items. (Don’t care about where they actually wind up!)
• Washing windows—not on ladders. Use nontoxic vinegar and water on a rag.
Yardwork
Being outdoors can improve one’s mood and lift the spirits. Outdoor tasks that work well include:
• Sweeping sidewalks and the patio.
• Weeding the yard and garden. Accommodate balance problems.
• Watering.
• Picking fruit and vegetables—not on a ladder.
• Picking and arranging flowers. Boxes of artificial flowers and unbreakable vases work well for making arrangements over and over again.
Shop and Garage Work
These activities may be especially enjoyable for male partners, who may enjoy:
• Rearranging items such as nuts and bolts, screws, and other shop items. Make sure your partner will not swallow small items. Lock up any dangerous tools or chemicals.
• Sanding wooden blocks or other simple shapes such as cutting boards. Mildly impaired patients may be able to do more complex woodwork.
• Sweeping the shop and garage.
Doing Laundry
Handling clean clothes that are warm and smell good can be a very soothing activity. Try:
• Sorting clothes. Be prepared for errors.
• Folding laundry.
• Putting clean laundry away, “arranging” it. Be prepared to do it again later when your partner is not around.
Food Preparation
Food preparation works well because it is familiar to everyone. Your partner may be able to help with even complex food preparation, one step at a time. Do not let the person use the oven or stove or sharp items. With your help, try having your partner:
• Prepare a set part of a meal each day. Perhaps he or she can always make the dinner salad.
• Prepare salsa or other dishes for which the person can chop to his or her heart’s content. Use rounded table knives with serrated edges—you can find ones that do work for this!
• Shell peas or clean and ready other garden vegetables and fruit for meals.
• Set the table, one item at a time. For example, all the plates first (or maybe only the plates), then all the spoons, with you pointing to where they go, and so on.
• Wash, rinse, or dry safe and unbreakable dishes, pots, pans, and utensils. The person probably cannot do all three, just one task—washing, rinsing, or drying, while you do the rest. (Soapy water is often very soothing to anxious patients.)
• Arrange flowers, items on serving plates (such as small sandwiches or cookies), and other items for a special small party for a few family members or for just the two of you.
Shopping
Shopping is one of the more difficult IADLs. It may overwhelm some patients, and some may obsess about the cost involved. Simplify purchases and shorten trips. Your partner may enjoy:
• Helping to plan a shopping list.
• Cutting out coupons. A great activity—outline cutting marks in dark ink, so the person knows where to cut (it is okay if your partner cuts out more than you need!).
• Taking items off store shelves and putting them in the cart.
• Helping you put items in the car and unloading them at home.
• Unwrapping purchases at home and putting away groceries.
• Shopping for a specific item, such as a birthday or Christmas gift. Choose a general type of gift together ahead of time, then write it on the shopping list for yo
ur partner’s reference.
Using the Telephone
The phone becomes an obsession with some patients. If this is the case, you may need to hide the phone or even disconnect it at times. Your partner may enjoy:
• A prearranged call to friends or relatives. Write down things the person wants to say ahead of time. Stay by your partner, preferably participating on a second phone, to offer prompts as needed.
• Having family and friends call the person. You should arrange it, know the topic for conversation ahead of time, and have people call at a specific time so you can help with the conversation.
Handling Money
Money can be an obsession for some patients. They may think someone is taking it or worry that they do not have enough. Nevertheless, your partner may enjoy:
• Having a small amount in a wallet, pocket, or purse, “just in case.” (Make sure to remove credit cards!)
• Paying the cashier or sales person with the exact amount. (No making change!)
• Sorting and stacking coins or putting them in the coin wrappers used by banks.
Outings by Car / Travel
If your partner loved to drive and cannot anymore, he or she may be upset when you are driving (see chap. 3), yet riding in a car is a great activity for most patients. Point out interesting things to your partner because he or she may not notice them on his or her own.
Basic car safety precautions include:
• Locking the passenger doors and windows using control options on the driver’s door panel.
• Deciding whether your partner will be safer in the back or front seat.
• Always having duplicate keys in your wallet or purse and somewhere outside of the car (such as in a magnetic case).
Your partner may enjoy:
• going to a specific place to picnic and walk, perhaps a park or by the ocean.
• combining a drive with errands—you can take a new or longer way if the person loves to ride.
If you cannot get your partner in and out of the car easily, try inviting friends or other family members along to help. Or just drive. Drive through new neighborhoods or parks or by the ocean. Have a picnic in the car at a pretty spot. Go to a drive-through restaurant window and then picnic in the car.