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Controlling stains and odor Include cranberry juice in the diet to help

control urine odor. Protect the mattress with rubber or

plastic sheets. Consider a breathable,washable layer like sheepskin betweenthe sheet and the waterproof materials toavoid excess sweating or a sticky feeling.

Remove soiled bed linens and clothingquickly. If its impossible to wash themimmediately, rinse them in cold water.Soak stained items in dishwashingdetergent to loosen stains.

Clean bedpans, urinals, and commodeswith household cleaners.

Avoid odors on furniture or otherhousehold items by cleaning soiled areaswith a mild dilution of cold water andwhite vinegar.

Protect furniture with disposable or otherwaterproof pads.

Helping with ToiletingToileting is a very private matter. It is a veryvulnerable and defenseless time for anotherperson. A reassuring attitude from you canhelp lessen feelings of embarrassment anddiscomfort.

Give him privacy

Look the other way for a few moments. Leave the room (if it is safe to do so). Allow him extra time to do what he can. Be patient when a request for your time

comes when you are busy with otherthings.

Make sure the environment supportsgetting to the bathroom Make sure the hallway and bathroom are

well-lit. Keep the path to the bathroom clear and

free of clutter. Keep needed items such as a walker or

cane nearby. Place a night light in the bathroom or

leave a light on.

Toileting is a very privatematter. A reassuringattitude from you canhelp lessen feelings ofembarrassment anddiscomfort.

10 FA M I LY C A R E G I V E R H A N D B O O K

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Te following assistive devices can helpwith toileting. Commodes are available to buy or rent

if its too hard to get to the bathroom.

Commodes are especially helpful duringthe night.

Bedpans and urinals may be neededif he cant get out of bed. Tey can bepurchased at medical supply stores andlarger drugstores.

Raised toilet seats and toilet risers raisethe height of the toilet seat making iteasier to get on and off of the toilet.

Disposable pads, briefs, andundergarments to protect clothing andbedding.

ConstipationConstipation is a common concern for manypeople. Common causes of constipation aresome medications, not enough uid and/or ber in the diet, over use of laxatives,lack of physical activity or immobility,depression or grief, changes in routine,diseases such as diabetes, Parkinsonsdisease, multiple sclerosis, and spinal cordinjuries, hemorrhoids, or ignoring the urgeto have a bowel movement.It is important to nd out what is causingthe constipation. Call your doctor to helpevaluate and identify the right treatment.In many cases, diet and life-style changeshelp to relieve symptoms and preventconstipation.

FA M I LY C A R E G I V E R H A N D B O O K 11

A healthy diet can help preventconstipation and keep skin healthy.

Encourage him to: Get plenty of uids. Drink 6-8 cups of

uid per day, more when the weather ishot or when exercising.

Cut down on alcohol and beveragescontaining caffeine (tea, coffee, soda).

Make healthy food choices. Fiber isespecially important for good bowelfunction.

Stay active to the extent possible. Relax. Dont strain to empty the bladder

or bowel or sit on the toilet too long.

Skin CareSkin is the rst line of defense a person has

to heat, cold, and infection. It is importantto help keep her skin healthy. Help her: Keep as mobile as possible. Keep skin clean, dry, and moisturized. Eat a healthy, well-balanced diet, and

drink plenty of uids.

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Bed SoresImmobility is the number one cause of bedsores (also called pressure ulcers). Peoplewho stay in bed for long periods or are in awheelchair are at the greatest risk.Bed sores can also be caused when the skinis weakened by: Friction. Friction is caused when skin is

rubbed against or dragged over a surface.Even slight rubbing or friction on theskin may cause a bed sore - especially forpeople with weak skin.

Dryness and cracking.

Age. Irritation by urine or feces. Lack of good nutrition or drinking

enough uids. Certain chronic conditions or diseases -

especially those that limit circulation.

Bed sores are a serious problem and, inmost cases, can be prevented by followingthe steps listed below.

A bed bound person should changeposition every two hours.

A wheelchair bound person should shifther weight (or be helped to) in the chairevery fteen minutes for fteen secondsand change position every hour.

Use mild soap and warm (not hot) water.Rinse and dry well pat, dont rub.

Gently clean off urine or fecesimmediately with mild soap and warm(not hot) water.

If incontinence is an issue, avoid usingblue pads or disposable waterproofunderpads that hold moisture on theskin. A waterproof cloth pad that canbe laundered and reused is a goodalternative.


Potential Pressure Points

Look at the care receivers skin at leastonce a day. Pay special attention topressure points.

Pressure points are indicated with circles inthe illustrations below.

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What to look forWhat a bed sore looks like depends on howsevere it is. Te rst signs of a bed soreinclude:

Redness on unbroken skin lasting 15-30minutes or more in people with lightskin tones. For people with darker skintones, the ulcer may appear red, blue, orpurple. If in doubt, compare the area tothe other side of the persons body.

Any open area - it may be as thin as adime and no wider than a Q-tip.

An abrasion/scrape, blister, or shallowcrater.

exture changes - the skin feels mushyrather than rm to the touch.

A gray or black scab. Beneath the scabmay be a bed sore. Do not remove thescab. If a bed sore is beneath it, thiscould cause damage or lead to infection.

Lifting or Moving a PersonTe care receiver may need physical help toget around the house. She may need help toget up from a chair or toilet, get out of bed,or into a wheelchair. As always, encourageher to do as much as she can herself!

How to ransfer a PersonTe following are steps to properly move aperson from one location to another. Tis isreferred to as transferring a person or justa transfer. In this case, the person is beingtransferred from a bed to a wheelchair. Help him to roll towards the side of bed. Supporting his back and hips, help him to

a sitting position with his feet at on theoor.

If you are using a transfer belt (see page15), stand in front of him and grasp thebelt.

If you are not using a transfer belt, standin front of him and place your arms aroundhis torso.

Brace his lower extremities with your kneesto prevent slipping.

ell him you will begin the transfer on thecount of 3.

On 3, help him to stand. ell him to pivot to the front of the

wheelchair with the back of his legs againstthe wheelchair.

Flex your knees and hips and lower himinto the wheelchair.

Have him hold the armrests for support.If you need more information orindividualized training on helping withtransfers, call the care receivers doctor. Teycan discuss with you a referral to a physicalor occupational therapist for assessmentand training related to transfers. Tisassessment and training is often covered byinsurance.


If you think she may bedeveloping or have a bed sore: Remove pressure from the area

immediately. Recheck the skin in 15 minutes. If the

redness is gone, no other action isneeded.

If the redness is not gone or an open

area develops, call your doctorimmediately . Do not massage the area or the skin

around it. Do not use a heat lamp, hair dryer, or

potions that could dry out the skinmore.

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Safety with transfers If the person cannot help with the

transfer at all, you need special trainingand/or adaptive equipment (e.g. a HoyerLift) to lift and move him.

Dont ever try to liftsomeone heavierthan yourselfunless youve hadproper training.

Te personshould neverput his armsaround yourneck during atransfer. It canpull you forward,make you lose yourbalance, or hurt yourback.

If you feel a strain in your lower back,stop the transfer and get help.

Proper Body Mechanics When LiftingIf you will be helping someone get up or into a chair, bed, or bath, be kind to your back!Remember... its the only one youve got!

Any time you lift or move a person, use proper body mechanics to prevent stress or injury toyour back. Think of yourself as an athlete. If youre on the injured list, youre out of the game.

Before lifting a person or moving anything, make sure you can lift or move it safely. Do not lifta person or a load alone if it seems too heavy.

Spread your feet about shoulder width apart with one foot slightly in front of the other toprovide a good base of support.

Bend at the knees instead of the waist. Keep your back as straight as possible. Bring the person/load as close to your body as you can. Lift with your legs, using your stronger set of buttock and leg muscles. Keep your back, feet, and trunk together and do not twist at the waist. If it is necessary to

change your direction when upright, shift your feet and take small steps. Keep your back andneck in a straight line.

When possible, pull, push, or slide objects instead of lifting them.

Helping her stand up Clarify with her where she wants to go

and make sure you think she can get therebefore helping her walk.

Before helping her stand, encourageher to:- Lean forward.- Use a rocking motion as momentum

(if able).- Move her legs off the bed or chair and

put her feet rmly on the oor. Place your arms around her waist. Dont

let her pull on your neck.

- Use her glasses and/or hearing aids.Its much easier to stand up from a high,rm chair with arms than from a sofa oroverstuffed chair.


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Te following assistive devices can helpwith transfers. A transfer belt is a belt made of sturdy

webbing or twill with a buckle or clasp on

it. Te transfer belt is placed around thecare receivers waist and is used to helphim transfer or walk. A transfer belt isa good tool to have for any person whoneeds help to transfer. If you do not havea store purchased transfer belt, you canuse a regular wide belt with a clasp.

ransfer boards provide a secure and safesurface for a person to slide from oneplace to another. ransfer boards work

well for people that can use their arms toscoot from one side to the other.

Lift cushions help a person withdecreased upper and lower body strengthto gently lower themselves into a chairor sofa and give them a boost whenstanding. Tese portable devices areplaced onto the seat of a chair and arepowered by a number of methods such aselectric power or air compressors.

Lift chairs are powered recliners that liftand tilt forward, helping the person tostand more easily and lower themselvesinto a seated position.

Managing MedicationsCareful medication management helpsprevent medication problems and makessure that medications do the job theyresupposed to do. Tis sections will help youmanage medications safely.

Working With TheDoctor And PharmacistMany care receivers take severalmedications and often see more than onedoctor. Keep a record (see next page) of allthe drugs she is using including prescription

drugs, O C medications, vitamins, foodsupplements, and herbal remedies.Give her doctor and pharmacist this list. Itis also a good idea to list any drugs she isallergic to or has had problems taking in thepast.

Hoyer lifts can be used with a carereceiver who cant bear weight or isextremely heavy and cant be safelytransferred by their caregiver.


Transfer boards work well for peoplewho can use their arms to move.

P a t t e r s o n

M e d

i c a l -

S a m m o n s

P r e s t o n

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Keep a Record

Keep a record of all medications she is taking. Always bring it with you to doctor appointments.

Keep the list current and take it with youto all doctor appointments. Tis helps avoidthe care receiver being given a new drugthat does the same thing as an existingmedication and helps prevent potentialdrug interactions.Drug interactions can: Make people sick. Cause symptoms that are mistaken for a

new illness. Increase or decrease the e ectiveness of medicines being taken.

Te likelihood of drug interactionshappening increases with the number of

medications being taken. Ask the doctor to review prescriptiondosages at least once a year. Over time, herneed for a medication can change. A chronicillness can improve or get worse. Olderpeople often need a smaller dose of a drugbecause drugs stay in their system longer.People who are small-sized or who loseweight may also need smaller doses.

Medication Dosage Prescribing Date Color What its for Special physician prescribed size & shape instructions

1.

2. etc.

What to Ask When a NewMedication is Prescribed

When the care receiver is prescribed a newmedication, you will want to ask the doctors

the following questions.q What can we expect as the normal

progression of the disease?q What is the medicine for?q Are there any risks or side effects to taking

this medication?q What does she do if side effects occur?q Will this new medicine work safely with

prescription and OTC medicines she is

already taking?q What are possible drug interaction signs to

look for?q Will the medicine affect her sleep or

activity level?q How often should she take it?q How much should she take?q How long should she take it?q How do I know if the medicine is working?

q Should she take it with food or on anempty stomach?q Are there other special instructions?

Should she avoid alcohol, sunlight, orcertain foods?

q What should we do if she misses a dose?q Is there a generic (not a brand name) form

available?


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Tips For Managing MedicationsSafely Never increase or decrease a medications

dosage without checking with her doctor. Only give her a medication that was

prescribed for her. Give the entire prescription even if

symptoms are gone unless your doctortells you otherwise.

Give medications with a full glass of waterunless instructions say to do otherwise.

Dont crush pills or capsules unlessyou check with your pharmacist. Many

medications have a coating to protectthe throat or stomach lining. A crushedpill could release all the medicine at onceinstead of the way its intended. For thissame reason, dont allow someone to chewpills or capsules unless youve checkedwith the pharmacist that this is okay.

Dont cut pills in half unless they have aline across the middle to show they canbe broken and you have checked rst with

the pharmacist. Ask the pharmacist ifthe pills come in smaller doses or ask thepharmacist to break them for you.

Trow away all medications that are pastthe expiration date.

Store all drugs in a cool, dry area. Dontstore medications in the bathroom. Tewarm and damp conditions can causemedications to deteriorate.

Te following assistive devices can helpwith managing medications. A pill container can be used to organize

pills to match your chart.

Multi-alarm pill boxes store medicationand provide reminder alerts to takemedications at prescribed times. Mostalerts come in the form of an audibletone at specic times of the day orpredetermined hourly intervals. Tese pillboxes also offer compartments to helporganize medications by day of the weekand time of day.

alking medication bottles have arecording mechanisms that lets you ora pharmacist record a message that canbe played back anytime. Te recordedmessage identies bottle contents andprovides reminders concerning when themedication should be taken.

Medication applicators help her applylotions and ointments on hard to reachareas such as the back and feet.

Pill crushers and splitters split or crushpills and tablets into a smaller size or apowder.

Additional ResourcesCaregivers Guide to Medicationsand Aging from the Family Caregiv-ers Alliance. Visitwww.caregiver.org

and click on Fact Sheets and Publica-tions or call 1-800-445-8106.

Medicines and You: A Guide forOlder Adults from the Food andDrug Administration. Visit www.fda.gov/cder/ .

http://www.fda.gov/cder/http://www.fda.gov/cder/http://www.fda.gov/cder/http://www.fda.gov/cder/

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Finding Less Expensive MedicationsTe high cost of prescription drugscontinues to be a concern for many people.Below are some valuable internet resourcesfor saving money on prescription drugs inWashington State. Visit www.rx.wa.gov and click on

Prescription Assistance Programs tond out if you qualify for government orprivate savings programs, to compare theprices of the most commonly prescribeddrugs, and nd links to Canadianpharmacies.

Benets Checkup (BCU) is acomprehensive online service to screenfor federal, state, and some local publicand private benets for adults ages 55and over. BCU connects you to programsthat help pay for prescription drugs,health care, utilities, and other needs.BCU provides a detailed description ofthe programs, contacts for additionalinformation, and materials to helpsuccessfully apply for each. Visit theirwebsite at www.benetscheckup.org .

Visit www.aarp.org/health/drugs-supplements (click on Drug Saving Toolunder Health ools) and nd an on-lineconsumer guide from AARP where youcan learn more about a variety of differentdrugs, their effectiveness, and compareprices.

Dealing with ChallengingPersonalities and Behaviors

While Providing Care

Te stress of an illness or disability canlead to a care receivers behavior becomingdifficult. His personality and behaviormay change because of the emotionaland physical changes he is experiencing. A person who has always had a difficultpersonality may become even more difficult.First, make an appointment with the carereceivers doctor to rule out any medicalreason for difficult behaviors. Tis is

especially important if an unusual behaviorcomes on suddenly for the care receiver.Medication side effects, a urinary tractinfection, depression, and dehydration aresome common culprits of physical problemsleading to difficult behavior.

Tips and Suggestions on Dealing with Difcult Behaviors Although you cant always control the other

persons behavior, you can control yourresponse to it. An important goal whendealing with any type of difficult behavior isto remain calm and balanced. Be patient with yourself. Youre doing

the best that you can do in a difficultsituation; blaming yourself wont helpsolve the problem.

Focus on the behaviors that are difficult,not the person.

Remember you have options, such asasking for politeness or leaving the room/area.

Practice a gentle assertiveness on yourown behalf. Standing up for yourselfavoids a buildup of resentment, hurt, orangry feelings.

http://www.aarp.org/health/drugs-supplementshttp://www.aarp.org/health/drugs-supplementshttp://www.aarp.org/health/drugs-supplementshttp://www.aarp.org/health/drugs-supplementshttp://www.aarp.org/health/drugs-supplements

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Te following are some common difficultbehaviors caregiver face and some tips andsuggestions for handling a rough patch orbad day.It is important to note that at some pointdifficult behavior can cross the line toemotional, verbal, or physical abuse bythe care receiver. Tere is no reason or justication for putting up with abuse.If you feel you are being abused, get helpimmediately.Mental health agencies, hospitals, oryour doctors office can give you names ofcounselors and mental health professionals. You can also look in the yellow pages of thetelephone directory. You dont have to waituntil things get intolerable to benet fromsome knowledgeable advice and supporthandling difficult behaviors.

If the care receiver has dementia, see page23 for more resources.

Remember these ve Rswhen handling difcult

behavior:R emain calmR espond to the persons feelingsR eassure the personR emove yourselfR eturn when you are calm

When a person who needs help refusesto accept itMost people dont like to admit they needhelp. In the care receivers mind, admittinghe needs help can signal he is losing hisindependence and abilities. Remember,change is di cult for everyone. If theperson resists your help, be patient andkeep the following suggestions in mind. Involve him as much as possible in

establishing his own care plan. Doeverything you can to understand howand when he wants things done.

Assure him he has the nal say indecisions about his care. He may be morewilling to accept help if it is offered in away that allows him to make decisions.

Reinforce that your aim is to worktogether to keep him at home as long aspossible.

If at rst you dont succeed, try again.Often if you wait 15 minutes and tryagain, your help will be accepted.

Remind him that giving up a bit of controlin one area of life can often lead to moreindependence in the long run.

Be patient. You may think you knowwhat has to be done and when. But, yourtimetable may not be the right pace for him.

Call your local FamilyCaregiver SupportProgram for supportor referrals. Seepage 43 for contactinformation.


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Excessive complaints and angry behaviorIllness and disability a ect everyonedifferently. Some people become easilyirritated. Tey may seem petty anddemanding at times. Te person may yinto a rage because you put too much creamin his coffee. When he is losing controlover parts of his life, he may be desperatelylooking for something he can still control. Dont downplay his feelings. Dont take the anger personally. Saying Its no big deal wont help, it

may even make him more angry. Instead,try something like, You seem reallyfrustrated. What can we do next time tomake it better?

Let him talk about his anger. Whatsmaking you feel so bad? You seem upset,can I help?

Helping a Person Accepta Home Care Aide

Introduce the idea slowly. Give her time to accept the idea. Offer a trial period. She may be willing to try an aide for

a limited time, especially if she knows she can change hermind later.

Sometimes people are more willing to accept in-home helpif it is presented as being for the caregivers benet. Forinstance, someone to help you keep the house clean or dothe heavy work.

Encourage family and friends to let her know they think anaide is a good solution.

Often people will listen to their doctor. Ask her doctor tosuggest a plan that includes an aide.

Often, the person may be concerned about the cost ofservices. If you can address this issue, perhaps she will bemore willing.

Make an effort to respect demands thatmay seem petty to you but are veryimportant to him. Remember, if he could

he would change the volume on the radiohimself or shave himself exactly how andwhen he wanted.

Find something to agree about. Yes, themail carrier hasnt been coming as earlyas he used to. Youre right, these sheetsare all wrinkled up.

Choose your battles. If either of you loses control of the

situation, walk away. ake several deepbreaths, count to 10, or give a silentscream while both of you cool off.

Look for patterns to the angry behavior.Maybe the outbursts always come in thelate afternoon or on days when yourein a hurry or stressed. ry to break thepattern. If you can avoid the triggers thatlead up to an angry outburst, you canreduce frustration for both of you.


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Anxious behaviorChronic illness or disability may makethe person more anxious than usual.She may worry about small details of hermedications, her blood pressure, or herblood sugar levels. She may make constantor unreasonable demands or refuse to allowanyone but you to do something. Anxiety may make her feel restless or dizzy,she may be hot or have chills, or she mayfeel like her heart is pounding. Anxiety canalso cause irritability, depression, insomniaand poor concentration. Identify if there is anything contributing

to anxiety such as too much caffeine,smoking, watching crime shows ontelevision, alcohol, and decrease thosethings.

Look for the feelings behind anxiousdemands. A person with breathingproblems may demand that windows areopen on a cold day because she feels shecant get enough air.

Use gentle touch to calm her. Reassuringher that things are under control whilestroking her hand or the back of her neckmay help ease the anxious feelings.

Encourage her to:- Breathe deeply.- Spend 20-30 minutes doing some

kind of deep relaxation per day suchas meditation, prayer, deep breathingexercises, or visualization.

- Choose some positive statements shecan repeat again and again that will helpcalm her down when she is anxious.

- Get regular exercise.- Stay well hydrated. Dehydration

contributes to anxiety.

You can also try to distract her so herattention becomes focused on somethingelse. Sometimes disrupting the thoughtpattern is enough to stop the repetitive

thoughts that are causing anxiety.Disrespectful behavior Calm yourself. Te natural response to

being treated disrespectfully is anger.ake several deep, relaxing breaths. Wait

to respond until you can do so morecalmly.

Give clear feedback. Let the person knowwhat he has done that was disrespectful

and how it makes you feel. Be speci c, use I statements, and keepyour comments brief and factual. Whenyou use that tone of voice with me, itupsets me and I feel unappreciated.

Set clear boundaries and communicatepolitely how you wish to be treated.

Respond in a positive rather than anegative way.

Listen to what the person might actuallybe saying behind the disrespectful words.

Ask the person Whats wrong? Did I dosomething to o end you? If I did, Imsorry. Tis can set the stage to resolverather than fuel the situation.


Additional Resource

Counting on Kindness:The Dilemmas of Dependency. (1991).Wendy Lustbader. The Free Press, New York.Visitwww.lustbader.com .

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Challenging Behaviors andDementiaDoes the care receiver have Alzheimers

or another type of dementia? Its notuncommon for a person with dementiato become anxious or agitated, to repeatquestions over and over, to pace or wander,to be suspicious, or to have hallucinationsor delusions. Such behaviors are upsettingto the person with the dementia andfrustrating for the caregiver. Now is thetime to get more information and support.Reach out to organizations that specializein working with people with dementia formore specic and detailed informationabout understanding and responding tochallenging behaviors. Tese organizationsoffer information over the phone, writtenmaterials, and connect you to localeducation and support groups that can helpand support you as time goes on.

Organizations Alzheimers Association, Western andCentral Washington Chapter. Call 1-800-848-7097, 206-363-5500, or on-line atwww.alz.org/alzwa . Alzheimers Association, Inland NorthwestChapter. Call in Spokane 509-473-3390,Southeastern Washington 509-713-3390 oron-line at www.alz.org/inlandnorthwest/ .Te national Alzheimers Association has a24-hour hotline at 1-800-272-3900. Alzheimer Society of Washington. Callthem toll free at 1-800-493-3959 or on-line

at www.alzsociety.org . Additional ResourcesHelping Memory-Impaired Elders: A Guide forCaregivers, by V.I. Schmall and M. Cleland.Discusses dementia in later life and waysto cope more effectively with the resultingchanges. Call 1-800-561-6719 to order orread on the internet at http://extension.oregonstate.edu/catalog (click on family

and home). Alzheimers Disease Education and Referral(ADEAR) Center. PO Box 8250, SilverSpring, MD 20907-8250 has a multitude ofbooks, pamphlets, videotapes on caregivingand dementia on their website at www.nia.nih.gov .Te 36-Hour Day: A Family Guide to Caringfor Persons with Alzheimer Disease, RelatedDementing Illnesses, and Memory Loss in LaterLife. Nancy L. Mace, and Peter V. Rabins.Mass Market Paperback (2001) (book).Caregivers Guide to Understanding Dementia Behaviors from the Family Caregiver Alliance. Read on-line at www.caregiver.org (click on Factsheets and Publications).

Alzheimers organizations are agreat resource for information andemotional support when dealingwith challenging behaviors.

http://extension.oregonstate.edu/cataloghttp://extension.oregonstate.edu/cataloghttp://www.nia.nih.gov/http://www.nia.nih.gov/http://www.caregiver.org/http://www.caregiver.org/http://www.caregiver.org/http://www.caregiver.org/http://www.nia.nih.gov/http://www.nia.nih.gov/http://extension.oregonstate.edu/cataloghttp://extension.oregonstate.edu/catalog

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Controlling the Spread of InfectionCaregivers must be constantly alert to theneed for cleanliness. It is vitally importantto prevent infections, both for you andthe care receiver. A care receiver can be atgreater risk of infection because his immunesystem can be weakened by his disease orcondition.

Simple infection control practices can helpyou control the spread of germs. Mostinfections are spread through direct contactfrom one person to another or coming intocontact with something an infected personhas used or touched.Basic infection control focuses on killingor blocking direct or indirect contact withgerms so they cant cause harm.

Hand WashingIt is impossible for the human eye to seegerms. Just looking at your hands will nottell you whether they are contaminated withgerms. You will want to wash your handsfrequently throughout the day. For example,wash your hands after caring for the carereceivers body or going to the bathroom.

Wearing Disposable Gloves

Wearing disposable gloves is another way tocontrol the spread of germs. You will want touse disposable gloves made of latex or vinyl.Dont use gloves if they are peeling, cracked,discolored, or if they have holes or tearsin them. Trow them away after each use.Change gloves between tasks if they becomecontaminated with germs.

Safety in the Home

1.

2.

3.

4.


How to Remove Soiled Gloves

Change gloves between tasks if theybecome contaminated.

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Cleaning and disinfectingTere are two steps to clean and disinfectany surface. Clean and scrub the surfacewith soap and water. Ten, disinfect thearea with a bleach solution or a commercial,household cleaning solution.One teaspoon bleach to one gallon ofwater makes a good disinfectant bleachsolution. Use the solution within 24hours. Wear gloves if your hands will havefrequent contact with the bleach solution. Also check the bleach label for directionsand warning statements.

Areas you will want to clean and disinfectinclude laundry contaminated with bodyuids, kitchen surfaces, bedpans, orcommodes.

ImmunizationsImmunizations are another way to protectyourself and the care receiver againstdiseases. Make sure you and the carereceiver get all of your recommended

immunizations.alk with your health care provider or check

out the additional resources listed below toknow what immunizations you may need.

e Center for Disease Control (CDC)recommends the following vaccines foradults. Tetanus-Diphtheria Vaccine (all adults,

every 10 years). In uenza (Flu) Vaccine (adults 50 and

older). Pneumococcal Vaccine (adults 65 and

older). Hepatitis B Vaccine (adults at risk). Measles-Mumps-Rubella (MMR) Vaccine

(susceptible adults). Varicella (chickenpox) Vaccine

(susceptible adults).

Home Safety Illness and disability increase the riskof accidents in the home. Unfortunately,people often wait until an accident happensbefore they make changes. Act now toprovide a safer home.

Preventing FallsFalls are a major health problem for olderadults and can be of concern for people withcertain developmental disabilities or chronicconditions.Many things can lead to falls, including: Vision and hearing problems. Impaired balance or awareness. Certain medications. Reduced strength. Alcohol or drug abuse. Hazards in the home such as clutter or throw rugs.

Many adults develop a fear of falling(especially if they have fallen before) or losecondence in their ability to move aroundsafely. Unfortunately, this fear can limit dailyactivities and mobility and increase feelingsof dependence, isolation, and depression.


One teaspoon bleachto one gallon ofwater makes a good

disinfectant bleachsolution. Use the solutionwithin 24 hours.

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Footwear All adults should have sturdy walkingshoes that support the foot. Shoes thattie or supportive sneakers with thin, non-slip soles and velcro fasteners to adjust forswelling are best. Slippers, high heels, and jogging shoes with thick soles should beavoided.

Reducing fall hazards in the home Remove clutter from halls and stairs. Remove throw rugs that arent securely

held down. Keep oors dry and in good repair. Use night lights in bedrooms, bathrooms,

and hallways. All rooms should have good lighting,

especially hallways and stairs. Stairs should have a strong hand rail. Vary the colors at oor level so you can

see where steps and edges are.

Keep things used most often on lowerkitchen cabinet shelves.

Use hand rails in tubs and next to toilets. Use safety toilet seats to make standing

and sitting easier. Use mats in showers and tubs.

What to do if a person is falling Dont try to stop the fall. You could both

be injured. ry to

support hishead andgradually easehim onto theoor.

If you are behindhim, let himgently slide downyour body.

There are a great number of simple and practical

things you can do to reduce the risk and fear offalling. Encourage her to: Have routine eye exams and wear her glasses. Have routine hearing exams and wear her

hearing aides. Do strengthening or balance exercises*. Use a walker or other needed assistive devices. Exercise*. Get up slowly after sitting or laying down. Reduce fall hazards in the home.

Have medications reviewed by her doctor.

* She may need to talk with her doctor before beginningan exercise program.

Strengthening and balancingexercises help reduce the risk of falls.


Preventing Falls

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If the person falls and is on the oor Ask him if he is okay. Check for bleeding. If he appears injured, is in pain, or

cant move any part of his body, call911 immediately . Many people areembarrassed and may want to get up ortell you everything is ne even if hurt.Observe him carefully.

If he isnt injured, ask him if he thinks hecan get up safely.

o help him stand up from the oor, bringa chair close to him. Ask him to roll ontohis side, get onto his knees, then supporthimself with the chair seat while hestands up.

If he needs more than a minimal amountof help to get up, do not attempt to lifthim by yourself . No one can safely liftan average-sized person from the oorwithout help.

Te following assistive devices are helpfulfor fall prevention. Socks and slippers with anti-slip material

on the bottom. Anti-slip matting for tubs and bathroom

oors. Grab bars to provide stability and support

in bathrooms and other areas. Wheelchair anti-rollback devices to stop

a wheelchair from rolling away when hestands or lower himself into a chair.

Chair, bed, and toilet alarms to signal

when he leaves a bed, chair, wheelchair, ortoilet unattended. Hip protectors to protect his hip from

injury in the event of a fall. Bedside cushions to help reduce the

impact of a fall if he rolls out of bed.

General Home Safety Tips Keep emergency phone numbers and your

home address and phone number postedby the phone. People often forget thisinformation in an emergency.

Know where any advance directives (seepage 51) are located and have them readilyavailable in case of emergency.

Consider enrolling in a CPR class. Call the American Heart Associations toll-free

number 1-800-242-8721 or visit theirwebsite at www.heart.org/heartorg/ andclick on CPR & ECC for a list of localclasses. Your local re department or RedCross chapter may also offer classes.

If the person lives alone You can purchase an electronic devicethat enables someone to call for help inan emergency. Te system is connected

to the phone or the person may wear aportable help button. When the systemis activated, staff at a response center willrespond.Tere are many different products on themarket such as Lifeline (1-800-380-3111)or Safe Alert (1-800-655-6872) or other,more local services. You can also call yourlocal Family Caregiver Support Program forinformation about cost and availability.


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Home Safety Tips For People WithDementiaIf the care receiver has poor judgment,memory problems, or has a dementiasuch as Alzheimers disease, special safetyprecautions will help you reduce the risk ofaccidents.Contact any of the organizations listed onpage 23 specializing in dementia for moreinformation.

Additional ResourceHome Safety for People with Alzheimers Disease from the Alzheimers DiseaseEducation and Referral (ADEAR). Call 1-800-438-4380 or read on-line at www.nia.nih.gov/Alzheimers/Publications/homesafety.htm .Tere are many assistive devices on themarket today that can help with home safety. Symbols or warning signs on doors,

cabinets and dangerous appliances canremind a person with dementia of unsafe

areas around the house. Wandering detection systems that alert

you if the care receiver leaves the roomor home. All usually require that thecare receiver wear a small ankle or wristtransmitter.

Lights that come on automatically whena person gets out of their bed or chair oropens a door during the night.

A No-Start Car Disconnect Switch disables the car so it will not start.

Te Alzheimers Association Safe Returnis a nationwide identication, support andenrollment program that provides assistancewhen a person with dementia wanders andbecomes lost.

Assistance is available 24 hours a day, 365days a year. If an enrollee is missing, onecall immediately activates a communitysupport network to help reunite the lostperson with his or her caregiver. Call1-888-572-8566 for more information.Comfort Zone is another system using the

latest home safety technology and allowsyou to change devices as a persons diseaseprogresses and safety needs change. Callyour local Alzheimers Association chapter(contact information on page 23). Another program called Project LifeSaveris available in several communitiesthroughout the state. Project LifeSaverrelies on proven radio technology and aspecially trained search and rescue team.

Clients enrolled in the Project LifeSaverprogram wear a personalized wristbandthat emits a tracking signal.

o nd out if Project LifeSaver is availablewhere you live, visit the websitewww.projectlifesaver.org .


Special programs help nd a personwith dementia.
http://www.nia.nih.gov/Alzheimers/Publications/homesafety.htmhttp://www.nia.nih.gov/Alzheimers/Publications/homesafety.htmhttp://www.nia.nih.gov/Alzheimers/Publications/homesafety.htmhttp://www.nia.nih.gov/Alzheimers/Publications/homesafety.htmhttp://www.nia.nih.gov/Alzheimers/Publications/homesafety.htmhttp://www.nia.nih.gov/Alzheimers/Publications/homesafety.htm

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We all need to nd pleasure in our daily lives.Some of the most important care you givedoesnt have anything to do with medicine,baths, or helping her eat. A laugh or a sharedcup of tea are as important for the carereceivers well-being as any physical care youprovide.Enjoying lifes pleasures doesnt have to endwhen illness or disability strikes. As youcontinue your time as a caregiver, stop andsmell the roses along the way. Dont forget toshare their wonderful aroma with the carereceiver.Good health is more than a healthy body. You both will live better and enjoy life moreif you care for your emotional and spiritualneeds.

The Importance of Social

ConnectionsCaring for another person can dramaticallychange your social life. It may be hard foryou to get out and socialize. Friends mayno longer come to visit or include you intheir activities. You and the care receivermay begin to feel lonely and isolated. Tefollowing ideas will help you both keep upsocial connections with others.

Enhancing Daily Life

Encourage people to visit Getting out to visit friends and family

may be difficult for you. Encourage othersto visit.

Be honest about your limitations. Im just not able to invite you for dinner, butwed love to have you stop by for some icecream later.

If its hard for others to visit, suggest they

send cards or letters, or make short phonecalls. Help put visitors at ease. If friends seem

uncomfortable around the person, explainthe illness if that seems helpful. Jillsillness isnt contagious. It does make hershort of breath, so talking tires her out.

A successful visit doesnt have to revolvearound conversation only. Read aloud,take a walk outside, play cards, or watch

a ball game together. Tese activities areoften more enjoyable for both people.

Senior Centers and Adult DayCentersIf you care for an older person 60 or older,she may enjoy organized activities at asenior center. Senior centers are facilitiesin a community where older people canmeet, share a meal, get care services, and

take part in recreational activities. Justas important, these programs give youregularly scheduled breaks.Look in the yellow pages under Seniors orSenior Services to nd your local seniorcenter or visit www.wsasc.org .


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Adult Day Care and Adult Day HealthCare Centers offer recreational and healthcare services for adults who need moresupervision or care assistance than senior

centers can provide.Senior I & A or Family Caregiver SupportProgram staff can help you nd a center inyour area.

Keeping Your Mind ActiveTe brain is like a muscle it needs regularworkouts. Even if the body is failing, mostpeople can keep a healthy, active mindthroughout life. Here are a few suggestions. Keep up your social life. Engage in plenty of stimulating

conversations. Read a variety of newspapers, magazines,

and books. Play games like Scrabble, cards and chess. ake a class on a subject that interests

you. Begin a new hobby.

Learn a new language. Do crossword puzzles and word games. Write letters. Listen to books on tape. Borrow them

from the library, rent them at video stores, or trade with friends.

If the care receiver has dementia, someof these activities may be frustrating. Ifthey are too difficult or stressful, changeactivities or modify them to make themeasier. Find activities you enjoy, and inviteher to participate in some way.For more information on planningactivities for a person with dementia, visitwww.alz.org (click on Life with ALZ).


Maintain Spiritual PracticesThe search for meaning and spiritualconnection provides a great deal ofsupport and comfort for many peopleexperiencing a health crisis or long-termillness. If religion has been an importantpart of your lives, it is important tocontinue to create opportunities forspiritual connection.The ritual of physically going to church,temple, or attending any other form ofspiritual activity makes it possible to getout into the community and connect withothers. If it is difcult for her to leavehome, you can: Read passages from religious books. Arrange for a member of the clergy, lay

minister, or parish nurse to visit.

Play sacred music on the radio. Watch church services on television. Continue meaningful rituals like prayers

before meals. Pray together. Sing or listen to spiritual music. Use services and liturgies that the

person remembers.

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The Importance of Good NutritionGood eating habits keeps your bodyhealthier and improves how you feel.Making even one improvement in your dietwill be a step toward healthier eating foryou and for the care receiver.To avoid disease, the 2005 DietaryGuidelines for Americans recommend: Eating a diet that includes plenty of

fruits, vegetables, whole grains, andnonfat dairy products.

Watching calories to prevent weight gain. Limiting alcohol, and cutting back on

foods high in salt, saturated fat, trans fat,cholesterol, and added sugar.

Te importance of waterGetting enough uids each day is one ofthe most important dietary additions formost people. Dehydration is a real dangerfor people who are ill or disabled, and itcan easily be avoided. Dehydration is theleading cause of afternoon fatigue.

Adults need at least 6 to 8 glasses of uideach day (unless otherwise instructed by ahealth care provider). Fluids can be takenin many forms, such as water, fruits andvegetables, juice, milk, broth, or soups.

Offer drinks frequently throughout theday. It is also a good idea to keep a glass ofwater by his chair or bed.

Be aware that some medications can

dehydrate a person and an older personskidneys may need more uid to functionproperly.

Some caregivers believe that cuttingback on liquids will reduce incontinence(accidents). In fact, too little liquid causesstrong urine which can irritate thebladder and cause a urinary infection.

If it is di cult for him to swallow water orclear liquids, slightly thicker liquids likenectars, cream soups, or milkshakes maybe easier. Commercial thickening agentslike Tickit are available.

Your local Family Caregiver SupportProgram staff can talk to you aboutthe variety of nutrition services andinformation they offer.When you contact them, also ask aboutthe Senior Farmers Market Program. Tis

program provides fresh fruit/vegetablebaskets semi-monthly to home-boundor low income seniors in many countiesthroughout Washington State.


Most adults need at least 6 to 8glasses of liquid each day.

Additional ResourcesFor more nutrition information, visit theAmerican Dietetic Associations website atwww.eatright.org and the Administrationon Agings site at www.aoa.gov (underelders and families).

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The Importance of Physical Activity Many people with some level of disability orchronic illness assume it is too late to makechanges. By age 75, one in two women andone in three men get no physical activity atall!However, there is strong, scientic evidencethat it is rarely too late for healthy life-stylechoices to positively, and often greatly,impact a persons physical, emotional, andmental health. As a caregiver, help the care receiver remainas physically active as possible. Tis can

mean: Having a good understanding yourselfabout the key benets of remainingactive.

Serving as a role model by making healthychoices and being physically active.

Encouraging her to talk with her doctorabout this issue and steps she can take tostay or become more physically active.

The Importance ofPhysical Activity For YouMany people think being physically activemeans playing sports or going to a gym andgetting hot and sweaty. When in reality,there is now strong scientic evidence thatmoderate physical activity like taking abrisk walk for thirty minutes each day mostdays of the week is enough to see realhealth benets and prevent certain diseases.

Staying Physically ActiveStaying active works best when you:

Match your interests and needs to theactivity. Choose an activity you enjoy enough

to do enthusiastically. Alternate new activities with old favorites to

keep things fresh.

Get a family member or friend to do theactivity with you.

Put physical activity on your calendar as youwould any other important activity.

Remember that something is better thannothing. Shoot for shorter, more frequentsessions rather than the occasionalprolonged session.

Make use of everyday routines. Take thestairs instead of the elevator, use a rakerather than a leaf blower, walk or bike tothe corner store instead of driving, or dostretching exercises while watching TV.

Additional ResourcesExercise & Physical Activitiy: Your EverydayGuide from the NIA is a free booklet

that gives examples and illustrations onstrengthening, endurance, balance, andexibility exercises. Read it online at:http://

newcart.niapublications.org/ (click onExercise and Physical Activity) or by calling1-800-222-2225.

Visitwww.altsa.dshs.wa.gov (clickon Services and Information) for moreinformation and internet links on this subject.

http://newcart.niapublications.org/http://newcart.niapublications.org/http://newcart.niapublications.org/http://newcart.niapublications.org/

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Caring for others is lled with many mixedand varied emotions such as feelingsof love, loss, anger, affection, sadness,frustration, and guilt.Its not uncommon for family caregiversto feel lonely and isolated. It takes a lot ofphysical, mental, spiritual, and emotional energy to care for someone else Youve probably heard it before you needto take care of yourself! Tat can seemoverwhelming and often requires energyand support to help make some changes.

The Emotional Challenges of Caregiving

The Importance ofEmotional SupportIts important for you to feel emotionallysupported. Current research is clear that thosewho get emotional support while caregivingfare far better and provide care longer thanthose who dont.Family and friends, while a valuable emotionalsupport system for some, may not always be

available or particularly helpful now. Tis isnot unusual. Changing family roles, unresolvedpast family dynamics, and stress brought on bythe care receivers health, can strain even thebest of support systems and relationships.

Have you created a circle of support by maintaining familyrelationships and friendships? Yes q Sometimes q No q

Do you say no to requests for your help if you cantrealistically accomplish them? Yes q Sometimes q No q

Do you ask for help from family or friends when you need it? Yes q Sometimes q No q

Are you open to using community resources or services for

yourself and/or the care receiver? Yesq

Sometimesq

Noq

Are you taking breaks from your caregiving duties? Yes q Sometimes q No q

Are you eating well? Yes q Sometimes q No q

Are you getting enough sleep? Yes q Sometimes q No q

Do you relax each day? Yes q Sometimes q No q

Have you laughed today? Yes q Sometimes q No q

How well are you taking care of yourself?Take a few moments and honestly assess how you are doing in the following areas of self-care.If you answer sometimes or no to several of the questions, you may need to look at how well youare taking care of yourself.

*excerpted from Minnesota Board on Aging


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Its important to pace yourself. Its oftendifficult to know how long youll needto provide care or if your caregiving willbecome more demanding over time. Tis job

doesnt come with a job description!aking care of yourself is about meeting

your needs so that you are physically,emotionally, and spiritually ready to meetthe needs of the care receiver. Caring foryour own needs is as important as takingcare of the other person. If you are sick orbecome physically or mentally exhausted,you cant care for someone else.

What Is Good Self Care?Tere are no rules about good self-careexcept it should help you to feel replenished,comforted, and relaxed. Tere are a varietyof positive ways people use to relax, de-stress, and refuel their mind/body/spirit.

Schedule time away on a regular basis.o maintain your own emotional and

physical health it is absolutely necessaryto get relief from your caregiving role.

Stay socially connected and involvedwith activities and people that bring youpleasure.

Keep yourself physically and mentallyhealthy.

Make sure you eat a healthy diet and getsome form of exercise as often as possible.

Protect your health. Make sure tomake and keep medical and dentalappointments for yourself.

Be kind to yourself. Give yourself creditfor the things you do well. reat yourselfto a small reward when youre feeling low.Tis can be as simple as taking the timefor a long, hot bath.

Be honest with friends and family aboutyour needs.

Tips for Finding or MakingTime for Good Self Care Change when you do favorite things. Your

former daily routines are often changed bycaregiving needs. You may need to pick anew time or day to do your favorite activity.

Change where you do favorite things. Beforeyou give up your lunch with friends, thinkabout having your friends bring lunch to yourhome. If possible, arrange to have someonesit with the care receiver.

Change the length of your favorite thing. Aquick walk around the block will never replacethe long walks you once enjoyed. However,that quick walk can help give you enough ofa break to come back feeling recharged.


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Managing StressStress is a normal part of every day life. Although small amounts of stress can keepyou alert, too much stress for long periodsof time is hard on your body, mind, andspirit.Under stress, your body goes on high alert.Essential body functions, like respirationand heart rate, speed up. Less essentialfunctions, such as the immune system,shut down. Tis puts you at greater risk forinfections, certain diseases, depression, oranxiety.

Caregivers often experience a higher rate ofstress, anxiety, and depression than thosewho arent caregivers.

Symptoms to Watch For

You may be experiencing too much caregiver stress if you notice any of the following symptoms listed below.

q Sleeping problems - sleeping too much ortoo little.

q Change in eating habits - resulting inweight gain or loss.

q Feeling tired or without energy most ofthe time.

q Loss of interest in activities you used toenjoy such as going out with friends,walking, or reading.

q Easily irritated, angered, or saddened.q Frequent headaches, stomach aches, or

other physical problems.Source: National Womens Health Information Center,www.WomensHealth.gov

ips for reducing stress Ask for and accept help. (See Asking for

Help from Family and Friends, page 41.) Set limits and let others know what they

are. Make sure you have realistic goals and

expectations of yourself and others. Dont expect to keep a perfect house or

entertain the way you did before youtook on a caregiving role. Holidays mayneed to be simplied and you can divideup responsibilities between other familymembers.

Humor is often the best medicine. Rent amovie or watch a V program that makesyou laugh. Read a funny book. Humor canwork wonders for relieving stress.

Find support through understandingfriends, support groups, or a professionalcounselor.

Avoid difficult people, for example, overly

critical friends. Practice deep breathing exercises, yoga, ormeditation.

Write in a journal. ry closing your eyes and imagining

yourself in a beautiful place surroundedby your favorite things.

Make a list of your own stress relievers.Keep it in a handy place and use it!


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DepressionIf you suspect you or the care receiver maybe depressed, look at the checklist below.Check the signs that apply to you or thecare receiver.

Signs of DepressionPhysical Signsq Aches, pains, or other physical

complaints that seem to have no physicalbasis.

q Marked change in appetite (or weight lossor gain).

q Change in sleep patterns (insomnia, earlymorning waking, sleeping more thanusual).

q Fatigue, lack of energy, being sloweddown.

Emotional Signsq Pervasive sadness, anxiety, or empty

mood.q Apathy (lack of feeling anything at all).q Decreased pleasure or enjoyment.q Crying for no apparent reason, with no

relief.q Indi erence to others.

Changes in Toughtsq Feelings of hopelessness, pessimism.q Feelings of worthlessness, inadequacy,

helplessness.q Inappropriate or excessive guilt.q Not able to concentrate, slowed or

disorganized thinking.q Forgetfulness, problems with memory.q Indecision, unable to make decisions or

take action.q Recurring thoughts of death or suicide.

Changes in Behaviorq Loss of interest or pleasure in activities

previously enjoyed, including sex.q Neglect of personal appearance, hygiene,

home, or responsibilities.q Di culty performing daily tasks

ordinary tasks are overwhelming.q Withdrawal from people and usual

activities, wanting to be alone.q Increased use of alcohol and drugs.q Increased irritability, arguing, or

hostility.q Greater agitation, pacing, restlessness,

hand wringing.q Suicide attempts or talking about suicide.

If you or the care receiver show several ofthese signs of depression for more thantwo weeks, see a doctor. Te rst step isa complete physical examination to ruleout any medical problems. A doctor mayalso prescribe medication that can help.Sometimes counseling with a therapist isuseful by itself, or in combination withmedication.If the care receiver is depressed andrefuses to get help, you can visit atherapist yourself. Tis can help you betterunderstand depression and ways to help inthe recovery process.


Call your local FamilyCaregiver SupportProgram for supportor referrals.

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SuicideFactors that put a depressed person at highrisk for suicide are: Severe personal loss, can be their own

health or of someone or somethingsignicant in their lives.

Feelings of hopelessness and helplessness. Living in social isolation. A prior suicide attempt. Alcohol or drug abuse. Expressions of worthlessness, everyone

would be better o if Im gone. A detailed suicide plan. A readily available lethal weapon,

especially a gun.

If you feel you or the care receiver is atserious risk of suicide, get professional helpimmediately through a local crisis line, amental health clinic, a hospital emergencyroom, or the police or other emergencyservice.

Grief and LossIt is common for caregivers to experienceloss not only for yourself but the carereceiver. Losses can include things like theloss of physical abilities, relationships andsocial activities, income, nancial security,feelings of purpose and meaning, privacy,control, and independence.Grief is a normal reaction to loss. Griefis a process. Grief does not proceed in axed order any more than life itself does.Many and varying degrees of emotionsand reactions appear, disappear, only toreappear again.

Grief is not limited to just your emotions.Grief can also impact your thoughts,physical body, relationships, and createspiritual turmoil.When moving through the grieving process,acknowledge, feel, and express all of theemotions and reactions brought on by theloss(es) you have had or are experiencing.Be a good listener to yourself. Let yourselffeel your emotions. What you feel is

valuable information. ry to understandwhat your feelings are telling you. Bepatient. Everyone grieves in her own wayand time. Good self care is essential duringthis time.Te following chart from the AmericanSociety on Aging provides some helpfulinformation.


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Shock/Numbness

This is natures way ofprotecting you, or helping youto cushion your mind and heartuntil you are ready to face theemotions of grief.

Anger This natural reaction may be

directed at ourselves, others, theperson you lost, or God.

GuiltThese feelings are natural,although not always realistic.

Relief A sense of natural relief canfollow the death of someoneyou cared for.

Anxiety/Panic Some anxiety is normal, but ifanxiety persists and affects yourfunctioning, seek care from aprofessional.

What you hear What you feel What may help

Im on automatic pilot. It seems like a baddream.

I feel as if Im walkingin a fog. It cant really be true.

Why me?

Why her?

Why now?

How dare they do that?

If only ...

Did I do the right thing?

I wish I had

At last it is over

Im glad he is no longersuffering

I dont have to worrynow

Am I going crazy?

Will I ever feel better?

How can I function?

Like a robot

Bewildered withno destination Numb, with frozenemotions

Irritable

Overreactive to smallthings

Others are to blame

Out of control

Responsible for some-thing that you didnt do

Remorseful

Ashamed

Lighter

More free

Like a weight is liftedfrom your shoulders

Afraid to be alone

Worry about the future

Fear something elsewill happen

Immobilized

Losing control

Approach shock by:

Taking care of yourselfEating nutritious meals,even if only a smallportion Walking, gardening,exercising

Release anger by:Walking, swimming,

exercisingCleaning, washingthe car

Screaming into a pillow

Work with guilt by:Talking over feelingswith someone whowill listen

Respond to relief:With acceptancenot guilt

Address anxiety by:Talking about feelings

Engaging in physicalactivity

Common Grief Responses


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Depression Some depression is a verynormal part of grief and should

lessen over time.If depression continuesand interferes with dailyliving, or if you are seriouslyconsidering ending your life,seek professional care atonce.

Sadness/Loneliness The initial visitors have goneand returned to their daily lives.Naturally, the feelings of facinggrief alone arise.

Confusion/ DifcultyConcentrating Your energy is focused on your

heart, not your head. This stagewill pass.

Grieving Behaviors All of this is a natural part of thegrief process. You are not going

crazy.

Respond todepression by:Talking it over with

othersDoing somethingspecial for yourself oranother

Walking, swimming,gardening

Attend toloneliness by: Going to a supportgroup to share thepain and learn newways to cope

Treat yourconfusion by:Being gentle with

yourselfMaking lists

Asking others toremind you of impor-tant dates and times

Respond by:Accepting yourselfand where you

are today but ifyou continue toexperience difcultieswith eating orsleeping or areseriously consideringending your life, seekprofessional care atonce

What you hear What you feel What may help

Whats the use?

How can I go on?

Life is the pitsIts all hopeless

Im exhausted

The house seems soempty

Nights are the hardest

I feel like I am losing mymind

I just cant rememberthings

People say things to meand I dont understandthem

I keep losing my keys

Behaviors can include:Talking to your lovedone as you go about

your day

Finding yourself repeat-edly reviewing theevents leading up to thedeath

Hearing your lovedones voice

Hurt, sad, empty, helpless

No desire to eat

Unable to sleep or sleepmore than usual

Headache, backache,upset stomach

Unable to concentrate

Unable to enjoyothers/no interest inpast pleasures

Overwhelming sadnessand emptiness

Isolated

DisorganizedAbsent-minded

Frustrated

Inability to follow aconversation

Behaviors can include:Visiting the cemeteryoften or refusing to go

at all

Dreaming about yourloved one or becomingupset that you dontdream of her/him


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Hospice CareHospice care involves a team of professionalsand volunteers who provide medical,psychological, and spiritual care for peoplenear the end of life and their families.Te goal of hospice care is to help make surethe persons last days are spent with dignityand quality, surrounded by the people sheloves.Hospice care can be given in a persons home,a hospital, adult family home, boardinghome, nursing home, or a private hospicefacility. A doctors referral is needed. Hospice

care providers are listed in the yellow pagesor check with your local Senior Informationand Assistance office (see page 45).

Additional ResourceVisit the Washington State Hospice &Palliative Care Organizations website atwww.wshpco.org to learn more abouthospice or nd a listing of local hospiceorganizations.

When You May NeedProfessional HelpTere are some occasions where the stressof caregiving puts you at risk of harmingyourself or your loved one. Danger signalsmay be:

Using excessive amounts of alcohol ormedications like sleeping pills.

Loss of appetite or eating too much. Depression, loss of hope, feelings of

alienation. Toughts of suicide. Losing control physically or emotionally. reating the other person roughly or

neglecting her.

If you experience any of these symptoms,you are carrying too great a burden.Consider professional counseling or talkto your doctor about your feelings. Your

doctor may recommend a counselor, or youcan contact your local hospital, ask trustedfriends if they know of someone, or lookin the yellow pages to nd a psychologist,social worker, counselor, or other mentalhealth professional. Your local Family Caregiver SupportProgram staff can be a good resource forinformation or referrals.

Adult AbuseIf you have any concern that you may hurtthe person you are caring for, get helpimmediately. Tere are many resourcesalready discussed in this booklet that canhelp.If you suspect someone else is hurting avulnerable adult, report it. It is estimatedthat 4 out of 5 times abuse or neglect of avulnerable adult goes unreported.To report abuse, call 1-866-ENDHARM(1-866-363-4276). If the person is inimmediate danger, call 911.


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Asking For Help FromFamily And Friends Although its hard to ask for help, its evenharder to provide care alone! Its not a signof weakness to ask for help. Instead, itsan important step in making sure the carereceiver gets the help he needs.Sometimes caregivers feel like theyrecarrying the whole load and others arent

doing their share. If you feel this way, itspossible that you may have refused helpat an earlier point when the job was lessdemanding. It is also possible that otherpeople in your life: Tink you have the job under control. Dont know what to do. People arent

mind readers, but most say yes whenasked.

Are afraid or uncomfortable aroundillness or disability. Offer informationabout the condition to make it lessfrightening. Its not contagious, or Billcant carry on a conversation anymore,but he loves to have someone read orsing to him for people who are afraidor uncomfortable around illness ordisability.

Where to Turn When You Need Help

How to Ask For HelpLike anything new, it may feeluncomfortable to ask for help. Te followingideas will help you get started.

Make a list Figure out what help is needed. Make sure

you think about everything you coulduse help with, not just direct caregiving jobs. Other people may nd it easier todo yard work, home repairs, laundry, orpreparing meals than to provide directcare. Anything that will lighten your loadis important.

Make a list of what needs to be done. Check off what you can reasonably do. Decide whats realistic for family and

friends to do. Find out if there are any services,

programs, and resources available in thecommunity to help (see page 44).


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Ask for helpKeep your list handy so that youre preparedto suggest tasks if people call or ask if theycan help. If you dont need their help rightaway, thank the person and ask if you canget back to them when you need help in thefuture. Be speci c. I need someone to take

Sarah to her doctors appointments everyWednesday.

Be positive. Its a big help when someoneelse does the grocery shopping.

Offer choices. Could you pick up theprescriptions at the pharmacy tomorrow

or stay here with Armando while I go?

Remember. It may take awhile to feelcomfortable asking for help. But take therst step. Come up with a plan and try itout. Chances are youll nd that it getseasier with time.

Hold a family conferenceCaregiving can bring families together,especially when everyone feels they havean important role to play. Even out-of-townfamily members can help by managing thebills, or helping with household repairswhen they visit.Holding a family conference is a good wayto get everyone in the same room and comeup with a plan.It may take more than one conversation

to gure out what to do. Many small stepsare better then one huge leap that leaveseveryone upset and more confused.Some family members may want to dosomething nice for you because of all you dofor the care receiver. Dont feel o ended orpatronized. Accept it for what it is, a thank-you for all you do.

Family CaregiverSupport Program (FCSP)In the Family Caregiver Support Program,experienced caregiver specialists oradvocates offer you practical advice andemotional support. Either in person or byphone, these professionals listen to yourquestions and concerns and understand thechallenges you face.Washington uses the ailored Caregiver Assessment and Referral ( CARE) processto tailor support and services to yourunique needs.

Te following are some of the many waysthe Family Caregiver Support Program maybe of help to you. It only takes a phone call!

Caregiver Counseling orConsultation A counselor or consultant can help youlearn to cope more effectively with theemotional demands, or even depression,that can result from caregiving. Tey canhelp you work through feelings of grief andloss, problem solve difficult relationshipsor behavioral symptoms, and work throughstress, anger, and guilt related to caregiving.

Help is a

phone callaway!


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Caregiver TrainingPowerful Tools for Caregiving is anexample of one educational series developedspecically for family members caringfor someone with a chronic illness. Youwill learn a variety of self-care toolsand strategies to reduce your stress,communicate more effectively with familyand healthcare providers, deal with difficultfeelings, and make tough caregivingdecisions.

Caregiver Support Groups A caregiver support group is a tremendoussource of information and support.Learning from others who have been insimilar situations to yours will give you newideas to cope with trying times. Knowledgethat youre not alone and that others havegone through what youre going throughbrings comfort to many people.For many caregivers, support groups offer achance to share feelings honestly, withouthaving to be strong or put up a brave frontfor the family. No one understands as wellas a fellow caregiver.

Even if youve never belonged to a supportgroup before, consider nding a supportgroup for caregivers or one that is specicto your situation. For instance, there are

groups for people who are caring for aperson who has had a stroke, Alzheimersdisease, cancer, AIDS and many others.

Respite CareRespite care is a service where anothertrained person or staff at a facility provideshort-term care for a few hours to a fewdays for your loved one giving you sometime away from caregiving.

Respite care can be in your home, throughan adult day center, or at a residential carefacility.

Information About ServicesTere are so many services, programs, andresources available that it can be hard toknow where to start or how to get them.Staff at your local Family Caregiver SupportProgram are well acquainted with whatservices are available where you live.

Contact Your Local Family CaregiverSupport ProgramIf any of the caregiver support servicessound interesting to you, call your localFamily Caregiver Support Program.


To nd the number foryour local Family CaregiverSupport Program, call toll-free 1-800-422-3263 or ndthem online at:www.altsa.dshs.wa.gov(click on Find Local Services)

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Working With Your EmployerIt is estimated that half of all caregivers areemployed full time. If you are an employedcaregiver, you may be struggling to balanceyour time and energy between work and home. In addition to all of the other suggestionsfound in this section for important self-care,the following are some suggestions on how towork with your employer.

If you think you will need to leave worktemporarily to provide full-time care,learn about the Family and MedicalLeave Act (FMLA). FMLA provides job

protection for employees who must leavetheir jobs for family medical concerns,such as providing care for a critically illfamily member.

Additional ResourcesMore information about the Family andMedical Leave Act is available on-line atwww.dol.gov/whd/fmla/ .Washington States Family Care Act addsto these rights by giving workers the choiceto use sick leave or other paid time off, ifthey have it, when a covered family memberhas a serious health condition. For moreinformation talk to your supervisor or go towww.lni.wa.gov/WorkplaceRights/ .Long-Term Care Insurance may be availablthrough your employer that could coversome care for your parents - ask yourpersonnel representative. For moreinformation about long-term care insurancesee page 49.

Help from Community Servicesand Programs for the CareReceiverTere are many community programs andservices available that can help the carereceiver with things like: Physical care such as getting dressed,

preparing meals, help with medications,personal hygiene, or getting in or out ofthe bed, tub, toilet, or the house.

aking care of the house or apartmentsuch as light housekeeping, shopping, orlaundry.

ransportation.


ake advantage of workplace policiesand benets Ask about exible and reduced hours, work

at home, or telecommuting. Employee assistance programs (referral to

counseling, community services). Family and Medical Leave Act (allows time

off for caregiving responsibilities). Dependent Care Assistance Programs

that allow employees to set aside before-tax dollars to pay for eldercare/caregivingservices.

alk with your supervisor about your

caregiving issues. Openly and honestlydescribe the situation before it becomes aproblem. Its better for your employer tounderstand what is happening than drawher own conclusions.

Keep as clear of boundaries as you canbetween work and home. For example, setlimits on non-emergency phone calls fromhome. Schedule regular times when you willcall and check in during breaks or lunchtime.

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Finding Local ServicesGetting started nding local services canfeel overwhelming. Te solution is to ndknowledgeable people who know what isavailable where you live. Te organizationslisted below can help. You can also contact your local FamilyCaregiver Support Program staff. Teyare valuable resources in gaining access toservices for both you and the care receiver.

Senior Information & Assistance (I & A)I & A is a free information and referralservice for adults age 60 and older and forfamily and friends helping care for the olderadult.I & A is part of your local Area Agency on Aging (AAA). AAAs were established underthe Federal Older Americans Act in 1973to help older adults (60 or older) remain intheir home. AAAs are located throughoutthe United States and are available in everycounty within Washington State.

Local offices throughout Washington canhelp you: Plan, nd and get more care, services,

or programs (e.g. transportation, meals,housekeeping, personal care).

Explore options for paying for long termcare and review eligibility for benets.

Figure out health care insurance andprescription drug options.

Get a listing of local adult housing andassisted living. Sort through legal issues (e.g. setting up

advance directives, living wills) or makereferrals for legal advice.

Some counties in Washington offer freelong-term care information, referral, andassistance for people of all ages through Aging and Disability Resource Centers .In these counties, the Aging and Disability

Resource Center includes the informationand resources outlined above for I & A. Visit www.agingwashington.org andclick on local AAAs. You can also look inyour phone book under seniors or seniorservices, or call 1-800-422-3263 andask the receptionist to give you the localnumber.

Home and Community Services (HCS)HCS is part of the Aging and Long- ermSupport Administration (AL SA), anadministration within the Departmentof Health and Social Services (DSHS).HCS offices are a tremendous resourceand the best place to start for an adultwho may need help paying for long termcare (Medicaid). Look on the back of thisbooklet for contact information. For moreinformation on Medicaid, see page 48.

Benets CheckupBenets Checkup (BCU) is a comprehensiveonline service to screen for federal, state,and some local public and private benetsfor adults ages 55 and over. BCU can helpyou connect to programs that help pay forprescription drugs, health care, utilities, andother needs. BCU also provides a detaileddescription of the programs, contacts foradditional information, and materials tohelp successfully apply for each. Visit theirwebsite at www.benetscheckup.org .


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Residential care is a term used to describe ahome or facility where an adult can live andget help with care in a community setting.Residential care may be the right decision if: Te care receiver has care needs that can

no longer be safely met at home. Te caregiver is emotionally and

physically exhausted and family andcommunity resources are not enough.

Be prepared Although the person you care for may notneed residential care now, its wise to preparefor that possibility. Plan ahead and knowwhat your options are before a crisis. Manyresidential care facilities have waiting lists. Visiting a facility doesnt mean you have tochoose or decide now. Putting your name ona waiting list isnt an obligation either.

Adult Family Homes and AssistedLiving Facilities An adult family home (AFH) is licensed toprovide housing and care services for upto six adults in a regular house located in aresidential neighborhood. Te AFH may berun by a family, single person, or businesspartners. Te AFH may also hire otheremployees. Some AFHs allow pets. In some

homes, multiple languages are spoken. Assisted Living Facilities (ALFs) are licensedto provide housing and care services toseven or more people in a home or facilitylocated in a residential neighborhood. All AFHs and ALFs provide housing andmeals (room and board) and assume generalresponsibility for the care receivers safetyand care.

Choosing Residential Care: WhenCare at Home is No Longer Possible

What additional services are offered isdifferent for each home and may include: Help with personal care. A nurse available on a part-time basis. Help with or administering of medications.

If you are exploring adult family homes orboarding homes, a free booklet ChoosingCare in an Adult Family Home or BoardingHome (DSHS 22-707) might be of interestto you. You can read the booklet on the internetat www.altsa.dshs.wa.gov (look underPublications). Tis booklet is available onthe internet in many different languagesincluding Spanish, Russian, Vietnamese,Cambodian, Chinese, and Laotian. A listing of AFHs and ALFs can be found

on the internet at www.altsa.dshs.wa.gov (click on Other Housing Options). Yourlocal I&A o ce can also help with this.


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Nursing Homes (Facilities)Nursing homes provide 24-hour supervisednursing care, personal care, therapy,nutrition management, organized activities,social services, room, board and laundry.

Entering a nursing home no longer meansevery person stays forever. People also goto a nursing home for rehabilitation or forshort-term, intensive nursing care. Oftenpeople get better or decide they want toreturn home and get services there.If your loved one ends up needing short-term nursing home care, plan ahead forwhat types of services and support he mayneed after leaving the facility to returnhome or to another residential care setting.Depending on your situation, talk to ahospital discharge planner, nursing homedischarge planner, sta at your local I & A,or your HCS case manager if the person iseligible or receiving Medicaid.

Retirement Communities/ Independent Living Facilities

Retirement communities and independentliving facilities are housing exclusively foradults (normally 55 or older). Te personis generally healthy and any medical orpersonal care can be provided by visitingnurses or a home health aide. Staff at theretirement community do not take on thegeneral responsibility for the safety andwell-being of the adult.Tere are all kinds of planned retirementcommunities from large scale, single familyhome developments to smaller-scale, seniorhouses or apartments.

Continuing Care RetirementCommunity (CCRC) A Continuing Care Retirement Community(CCRC) is a residential community foradults that offers a range of housing options(normally independent living through nursinghome care) and varying levels of medical andpersonal care services. A CCRC is designed tomeet a residents needs in a familiar setting asshe grows older. People most often move intosuch a community when theyre healthy. A CCRC resident has to sign a long-termcontract that provides for housing, personalcare, housekeeping, yard care and nursing care.Tis contract typically involves either an entryfee or buy-in fee in addition to monthly servicecharges, which may change according to themedical or personal care services required.

Fees vary depending on whether the personowns or rents the living space, its size andlocation, the type of service plan chosen, andthe current risk for needing intensive long-term care. Because the contracts are lifelongand fees vary, it is important to get nancialand legal advice before signing.

o nd local retirement or continuing carecommunities in your area, contact your localI & A o ce.


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Long-term care is often paid for privatelyout-of-pocket (funded through savings planannuities, certain life insurance policies,or reverse mortgages) or with healthinsurance. Often, it is a combination ofboth.

MedicareMedicare is a government health insurance

program for people 65 and over, somepeople under the age of 65 with disabilities,and people of any age living withpermanent kidney failure. It pays for manyhealth care expenses but does not coverthem all.Medicare has limits on the type of care itwill pay for and for how long. For example,Medicare or Medigap policies do not payfor long-term care. Tis includes a stay at anursing home, an assisted living facility, orin-home personal care services.Contact a Social Security Administrationoffice for a Medicare application and moreinformation about the program. Lookin the Federal Government section ofthe phone book under Social Security Administration or visit their website atwww.ssa.gov .

Paying for Services or a Care Facility

Additional Resource You can also nd more information aboutMedicare and a variety of insurance-relatedtopics at the Washington State Office ofthe Insurance Commissioner website atwww.insurance.wa.gov (click on YourInsurance and then Medicare.)

MedicaidMedicaid is a government health insuranceprogram available to people with verylimited income and resources. Medicaid canpay for medical services in your own homeor if you live in a residential care facilitythat takes Medicaid residents.For more information about applying forMedicaid, contact your local HCS office (see

back of booklet for contact info) or visitthe Aging and Disability Administrationwebsite at www.altsa.dshs.wa.gov (click onApply for Medicaid). A free booklet, Medicaid and Options forLong- erm Services for Adults (DSHS 22-619)is also available with detailed informationabout how to apply for Medicaid.

The Statewide Health InsuranceBenets Advisors (SHIBA) HelpLineprovides free help to people of all ageswith questions about health insurance.Call them at 1-800-562-6900.


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You can read the booklet on the websiteat www.altsa.dshs.wa.gov (click onPublications) or ask for a printed copyby calling 1-800-422-3263. is booklet is

available on the internet in many differentlanguages including Spanish, Russian, Vietnamese, Cambodian, Chinese, andLaotian.

Other Insurance ProgramsLong-Term Care InsuranceLong-term care insurance is the primaryinsurance that pays for long-term care and is

a private health insurance plan you pay for.Long-term care insurance covers the costs oflong-term care not covered by other healthinsurance. Premiums are usually based onage, health, length of deductible period,a

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