Caring for a Loved One with HD: Self-Care for Family Caregivers

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1 Caring fr a Lved One with HD: Self-Care fr Family Caregivers HDSA Center f Excellence UC Davis Medical Center Lisa Kjer, LCSW Caring fr a Lved One with HD Caring fr a lved ne with a chrnic illness such as HD can be bth physically and emtinally demanding. The cmbinatin f lss, prlnged stress, the physical demands f caregiving, and the emtinal aspects can place caregivers at risk fr significant health prblems. Caring fr smebdy is never easy and is nt withut challenges and difficulties, but there are strategies and specific actins yu can take t prevent negative cnsequences t yur physical and emtinal health. Caregiving Statistics Abut ne in ten (11%) caregivers reprt that caregiving has caused their physical health t get wrse. 1 23% f family caregivers caring fr a lved ne fr 5 years r mre reprt their health as fair r pr. 2 Specifically HD caregivers als had diminished health related quality f life with 43% reprting that they were dissatisfied with their verall quality f life. 3 Caregivers are less likely t engage in preventive health behavirs. 4 Studies cnsistently reprt higher levels f depressive symptms and mental health prblems amng caregivers than amng nn-caregiving peers. 5 Estimates shw that between 40-70% f caregivers have clinically significant symptms f depressin with apprximately ne quarter t ne half f these caregivers meeting the diagnstic criteria fr majr depressin. 6

2 S e l f - C a r e f r F a m i l y C a r e g i v e r s - P a g e 2 Nw these statistics are nt meant t discurage, but rather demnstrate the negative impacts caregiving can have if yu d nt adequately care fr yurself. Our hpe is this will encurage yu, as a caregiver, t take yur health and well-being seriusly s yu can remain healthy t care fr yur HD lved nes. Impact n Physical and Emtinal Health Physical symptms may include: Emtinal Symptms may include: Health decline (frequently sick r under the weather) Sleep deprivatin Exhaustin Changes in appetite r weight Failure t exercise Putting ff r failing t attend medical appintments Excessive alchl, tbacc, drug use Overwhelming stress Prlnged sadness Depressin Guilt Anger Grief Frustratin Anxiety Scial islatin r withdrawal Taking Care f Yurself When caring fr a lved ne with HD yur ability t care fr yurself is just as imprtant as their care. Identifying and planning fr yur wn self-care can be essential t preventing significant risks t yur health and well-being. Self-Care Strategies 1. Educate and Plan Educate yurself abut HD t understand the disease prcess and hw t realistically plan ahead. Discuss finances and healthcare wishes Identify cmmunity resurces that may assist yu and yur lved ne. Cnsider getting ther family/friends tgether t discuss the care needed and develp caregiving plan. Arrange backup caregiving that is regular and dependable. Get rganized (Keep imprtant paperwrk and resurces rganized fr easy reference.) Keep list f dctrs, medicatin and medical histry up t date and readily available. Always ask questins when yu have them. 2. Stress Management Techniques Recgnize emtinal r physical symptms early and make changes befre they becme verwhelming. Identify areas f stress that yu can change and areas yu cannt change. Fcus energy n changing what yu can.

3 S e l f - C a r e f r F a m i l y C a r e g i v e r s - P a g e 3 Use team apprach t accmplish daily tasks s yu can fcus n ther needs. Ask neighbrs t assist with mwing lawn, transprting children, raking leaves, etc. Regular and cnsistent exercise. Cntinue t participate in enjyable activities that ffer respite. Activities with friends, hbbies, etc Set realistic expectatins and gals given yur situatin. Find reasns t laugh. Rent funny mvies, read cmics, laugh at yurself r even HD. Utilize relaxatin methds Yga Meditatin Deep breathing Sleeping in Reading Bubble baths Any creative utlet (painting, writing, drawing, arts and crafts, scrapbking, etc.) Outdr activities (gardening, walking, etc.) 3. Cmmunicatin Use I statements rather than yu statements t express yur feelings t avid defensiveness r blaming thers. I feel angry instead f yu make me angry Respect the rights and feelings f thers. Avid saying smething t intentinally hurt anther persn s feelings r smething yu will regret later. Allw the ther persn t express his/her feelings as well Be clear and specific abut what yu need r want. Dn t hint r expect the ther persn t guess what yu need t avid frustratin and misunderstandings Actively listen Make sure t listen t ther persns s yu can directly and respectfully address what is being cmmunicated. Be hnest and genuine in yur cmmunicatin with thers. 4. Exercise Exercise can: Imprve sleep Reduce stress and tensin Reduce feelings f depressin Increase energy and alertness Restre endurance, balance, strength and flexibility Participate in regular (daily) exercise fr best results Any exercise will ffer physical and emtinal benefits. Finding the time t exercise can be difficult, hwever walking can be an effective, easy exercise t incrprate int yur daily rutine. Walk arund yur neighbrhd, mall, t the stre r a nearby park

4 S e l f - C a r e f r F a m i l y C a r e g i v e r s - P a g e 4 Find activities yu enjy Lk fr classes thrugh lcal clleges r parks and recreatin fr ther exercise pprtunities Hiking clubs, tennis lessns, weight lifting, btcamps, running clubs, etc. 5. Scial and Cmmunity Supprt Scial Supprt can cnsist f: Family, friends, neighbrs, church, c-wrkers, ther HD families, etc. Cmmunity Supprt can cnsist f: Health care prfessinals, HD rganizatins, scial service rganizatins, etc. Utilizing bth yur scial supprts and cmmunity supprts will assist with yurself care and care f yur lved ne. Identify yur scial and cmmunity supprt available t yu. Ask fr help and assistance when needed. Participate in supprt grups fr HD and/r caregivers. Utilize any respite and/r Adult day care health prgrams Can be beneficial t bth caregiver & patient Get recmmendatins n available resurces and supprt frm health care prfessinals that yu r yur lved ne may benefit frm. 6. Ask Fr and Accept Help Yu may feel that asking fr help may burden thers r it may admit yu can t handle everything yurself. Nbdy can care fr a lved ne withut help frm family, friends, cmmunity, r health care prfessinals. Reaching ut fr help when yu need it is a sign f persnal strength. Family/friends/neighbrs ften want t help but are unsure f what is needed r mst helpful. Prepare a mental list f ways thers can help Assist with transprtatin Husehld tasks: walking the dg, mwing the lawn, putting ut the trash, preparing meals Assist with cmpleting and/r mailing benefit applicatins r frms Running errands Keeping patient cmpany while yu care fr yurself Cnsider the persn s special abilities and interests If yu need help with preparing meals, ask a friend that enjys cking, etc. Resist asking the same persn repeatedly Make a list f things that need ding Be specific and direct with yur requests I want t g t church n Sunday; wuld yu be available t keep Lisa cmpany frm 8:00 t nn?

5 S e l f - C a r e f r F a m i l y C a r e g i v e r s - P a g e 5 Self-Care Overview Caregiving is a prcess that will invlve a great deal f change in family structure and rles as well as a change in what yu accept as nrmal daily life. Caregiving requires a great deal f patience, strength, flexibility, creativity, and energy. Yu will need curage t ask fr help and accept the situatin yu are in alng with insight and recgnitin f yur limitatins and the limitatins f yur lved ne. Caring fr smene with HD is a lng term cmmitment therefre it is imprtant t remember that is nt selfish t fcus n yur wn well-being and desires. After all, if yu cannt care fr yurself, yu will limit yur ability t successfully care fr yur lve ne. Please seek medical attentin if yu are experiencing any prlnged physical r emtinal symptm interfering with yur health and/r yur ability t care fr yur lved ne. Help and supprt is available, yu just have t ask fr the assistance. Lastly, we knw that caregiving is a challenging and difficult jb, s make sure t reward and praise yurself fr yur cmmitment and effrts t care yur HD lved ne. THANK YOU fr being an HD Caregiver! Please cntact Lisa Kjer, LCSW at lkjer@hdsa.rg r fr mre infrmatin.

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