The caregivers are often just as afraid, if not more, as we are. They see the pain and frustration we are feeling and yet they cannot do anything. I am going to link a couple site I found thoughtful and maybe some excerpts.
Some of report’s conclusions: some of the results are mixed. Children engaged in caregiving are not usually doing it alone and are participating in the same educational and social activities as their noncaregiving peers. There are indications, however, that some children are experiencing distress that is manifested in behavioral and school problems and feelings of isolation and sadness. Boys in particular seem to have more difficulties than girls. Children in minority households with lower incomes are under particular stress and report receiving less help in carrying out their tasks.
Suggested solutions are more general in nature and include ideas about creating services to assist child caregivers. The report ends with an extensive bibliography of related resources.
Caregiver Tip: It isn’t possible in every situation because family life is different for each of us and because life is harder for some than for others. However, to the best of your ability, avoid placing children in caregiving roles. http://www.mscaregiver.com/children-as-caregivers/
Caregiver Tip: Children who have family members with MS will wonder if they will get the disease. Be honest with children in a way that normalizes their concerns without giving them reason to worry. How to be honest while minimizing worry is something each parent must determine based on their knowledge of their child, his or her personality, and the child’s tendency to worry. http://www.mscaregiver.com/daddy-will-i-get-ms/
But I’ve dreaded this day.
I’ve dreaded the day when she would ask the question of her own accord because it means she is worrying about MS for herself. As we mature we lose a little innocence day by day about the world around us. The same thing happens when a child grows up with a family member who has a chronic disease. One loses innocence through exposure.
I wish she were still MS-innocent. But she’s not. Fortunately, she’s not a worrier.
The statistics are available and easy to report. According to The Multiple Sclerosis Gateway (created by Bayer Schering Pharma), “Children where one parent has MS have about a 3% risk of developing MS later in life.” The risk is 20-40% greater than the risk for the general population who have no parents with MS. On the bright side, that means there’s a 97% chance my daughters will never have the disease.
Stats are easy to report. What isn’t easy is the small dread that will always be a part of her life. Even if she doesn’t spend time worrying about it, it’s there hiding in the dark of negative possibilities. It’s something I think of everyday for both my daughters.
How did I respond to her question?
“You don’t catch MS like you do a cold when someone sneezes on you. You know you won’t get it from hugging or kissing Mommy. It’s not like that. I can’t say you’ll never have MS, but I can say it’s something you don’t need to worry about. The chances are so small. There’s a very tiny possibility but it’s certainly not probable. The chances are very great that you never will.”
I hate even having to think about this but I worry about my daughter, and sons and if I have cursed them to the life I live.
10 tips for caregivers
Caregiving for someone with multiple sclerosis (MS) can provide an opportunity to demonstrate your love and commitment to that person in his or her greatest times of need, but it can also be challenging, exhausting, and stressful. All too often, caregivers — whether they’re looking after someone with multiple sclerosis, cancer, diabetes, or another chronic illness — put their own needs on the back burner, which can lead to feelings of depression, resentment, and isolation. But there is another way.
If you’re caring for someone with MS, pay attention to these steps suggested by the National Family Caregivers Association and the National Multiple Sclerosis Society. You need to take care of yourself as you care for someone else:
The more you know about MS, the more you’ll feel ready to face the challenges multiple sclerosis can pose. Learning as much as you can about the illness and the available treatment options can empower you to help your loved one make decisions regarding his or her care.
2. Connect With Others
Caregivers can feel as if they’re on their own, and that others just can’t or won’t understand what they’re going through. Networking with other caregivers, either in a support group or through online message boards and chats, can help prevent the guilt and turmoil that can arise when negative emotions surface. Talking with others can also help you see the situation from another point of view, brainstorm new solutions for coping with MS-related issues, or just feel that you’re not so alone.
3. Say Yes to Help
Thinking you have to do it all is a common mistake of caregivers. Instead of turning down offers of help or not following up on them, say yes and be ready to explain the specifics. Do you need someone to stay with your loved one while you go shopping once a week? Could you use help with transport to and from the doctor’s? A casserole or other ready-to-eat item for days when cooking seems out of the question? Whatever it is, don’t be afraid to ask. People often want to help but don’t know how.
4. Get a Guide
There’s no need to feel as though you’re sailing into uncharted water as a caregiver for someone with MS. Whether your MS caregiving question is small or big, the National Multiple Sclerosis Society has established a toll-free hotline — 1-800-344-4867 — staffed with MS Navigators who can help steer you toward the information or resources you need.
5. Give Yourself a Break
Caregiving is a big job. And like any job, it’s one you need a vacation from once in a while. Make a point of lining up occasional respite care, either from a professional or from family and friends, so you can take the time you need to rejuvenate.
6. Don’t Let Things Build
If the warning signs of caregiver burnout emerge — you feel hopeless or helpless, you have trouble sleeping, you lose or gain weight, you lose interest in things you once enjoyed, you cry or feel as if you’re on the verge of tears or are simply emotionally or physically exhausted — take immediate action. Getting help for these feelings early can help you avoid more serious problems later.
7. Don’t Deny Your Feelings
Allow yourself to grieve over the losses caused by your loved one’s MS, and also to dream new dreams about the future. If you’re struggling, talk about your feelings with a trusted friend, a member of the clergy, or a therapist. And be sure to speak to a doctor if you think you might be experiencing serious symptoms of depression or anxiety.
8. Take Care of Yourself Too
You’ll feel much more capable of handling the tasks of an MS caregiver if you take excellent care of your own health as well. When you eat a balanced diet, engage in regular exercise, get enough sleep, make time for hobbies or activities you enjoy, and schedule time for relaxation, you’re better able to tackle the stress of caregiving.
9. Promote Independence
Be open to technologies and ideas that allow your loved one to be as independent as possible. Not only will he or she appreciate the freedom to accomplish some things, but you’ll be allowed more time to concentrate on other things.
10. Trust Your Gut
What works for you and your family may be different from what works for someone else in a caregiving situation. Trust your instincts to lead you in the right direction when it comes to decisions about your loved one’s care.
Remember — it’s not selfish to take care of your needs too. Caregiver burnout doesn’t help anyone. By taking these steps, you’ll not only feel better but you’ll be a better caregiver all around. http://www.everydayhealth.com/multiple-sclerosis/multiple-sclerosis-caregiving-tips.aspx
This is a good one for those having a hard time. http://www.caring.com/articles/7-deadly-emotions-of-caregiving
THIS NEEDS TO BE READ BY THE HUSBANDS or other men caring for their wives, just remember we are supposed to ask for help and that means you can too. http://www.caring.com/articles/caregiver-stress-syndrome-different-for-men
Emotions are real and sometimes they hurt, but when we talk about the at least we know where the other is coming from.