Ten Tips for Caregivers to Stroke Survivors
At times you will feel helpless and inept. At other times you will feel like you are your loved one's greatest warrior in a world where you have to fight for therapies, information, understanding, help, payments from the insurance companies, and time to get everything done that needs doing. These are all normal experiences and feelings. Adapting the ten tips below can help you cope and become a more effective caregiver.
(1) Keep good records. Set up a notebook with sections to:
a) Document all your phone calls to doctors, therapists, hospitals, and pharmacies.
b) Document all applications and contacts with places like Social Security Disability, the Veteran Administrations, insurance companies, banks, pension administrations, etc.
c) Document out-patient or home therapies and your loved one's progress and moods
e) Keep a record of all appointments
f) Keep contact information for doctors, hospitals, therapists, pharmacies, facilities, agencies, community and internet resources, etc.
g) Keep notes of all medications given and the effects you see in your loved one when changes are made
(2) All strokes are different depending on the location in the brain and the size of the clot or bleed. All stroke survivors are different depending on their determination, age and inner resources. Research your care recipient's type of stroke. Know what part of the brain was damaged and what that part of the brain controls. The more you know about strokes the better you'll be able to react appropriately to the changes you'll see in your loved one and to become a better caregiver.
(3) Be grateful when extended family or friends pitch in to help and don't let yourself be eaten up with resentment when they don't. It's common for people to rally around in the first month, and then drop off after they think you have settled into your caregiver role. Keep a To-Do list handy for those times when others ask, "Is there anything I can do?" People will response quicker if they are given a specific task rather than a general, "I'll let you know." You can even make a joke of it and say, "Here's my To-Do list. Take your pick."
(4) Develop a sense of humor. It defuses the tension when speech issues come with a stroke, food is spilled or other frustrations and accidents occur. Don't treat them like the elephant in the room that no one talks about.
(5) Find a local or on-line stroke support group. Call your local rehab hospital's social worker to see what might be available locally. On-line you'll find message boards at Empowering Caregivers, The American Stroke Association and The Stroke Network where you can interact with other caregivers.
(6) Be grateful for and celebrate every sign of progress no matter how small, but remember that your stroke survivor might take a step backwards once in a while. Plateaus will also happen; don't get discouraged when they do even though insurance companies will drop coverage for therapies when a plateau lasts too long. Plateaus are sometimes followed by a nice, spontaneous jump forward. If you see positive changes happening after a long plateau ask your doctor if she or he will write you a new prescription for more therapy. If it's a new calendar year, you can often get the insurance companies to agree. Be a strong advocate for your stroke survivor.
(7) When you feel over-whelmed, call an understanding friend to confident in. Ask for, or hire, help if you need to run away from caregiving for a few hours. A movie or a walk in the park can do wonders to recharge your batteries. If you have trouble finding someone to sit with your care recipient, check to see what community resources are available in your area such as adult day care or caregiver respite services through churches or synagogues. Most areas have a 211 telephone system. Start by calling that number for caregiver related referrals. Above all, don't feel guilty if you need a break.
(8) Subscribe to the Stroke Connection Magazine (published by the American Stroke Association) and theStroke Smart Magazine. (published by the National Stroke Association. Both of these magazines are free and can be ordered on-line.
(9)You will make mistakes, loss your temper and/or have feelings of complete helplessness. Don't beat yourself up for this. You are only human and the beginning weeks/months of caregiving are very stressful. Give yourself time to adapt to your new routine and to develop coping skills. Seek professional counseling if you start feeling too trapped, resentful, lost in the shuffle or seriously depressed. Many caregivers as well as stroke survivors need antidepressants in the first six months following the stroke. Remember you can't care for someone else if you don't take care of your own mental and physical health.
(10) If you are caring for a parent, the role reversal of a child taking care of parent---no matter what your ages---is a difficult transition to make for most new caregivers. Much depends of the personality of the care recipient's ability to give themselves over to that care and on the son/daughter's ability to accept the fact that they are TRULY in charge, even if it's only temporary. A caregiver to a parent who has had a stroke must be prepared to make the tough decisions, even if you get no cooperation from their mom or dad. Don't feel guilty if you have to go against their wishes. It's pay-back time for all the times when your parent had to make unpopular decisions for you in YOUR best interest.
Being a caregiver is a job few of us want but most of us will do at one point in our lives. As you take on this new role, remember that you are not alone. Reach out to others who have been there, done that and who will understand how this job can be both the toughest and the most rewarding thing you've ever had to do. ©
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