Advice for Chapel Hill Caregivers: What to Expect When You Become a Dementia Caregiver

November 29, 2016 | By Lorenzo Mejia

Many caregivers are not sure what to expect when it comes to caring for a loved one with dementia. Whether you are a spouse or a family member, there can be challenges to providing the best care for your loved one. The best way is to educate yourself and find a support group to help you because you will need it. Here are 10 tips for caregivers.

  1. Ignore those people who say it is harder on you. People with dementia know what is happening to them and are aware that they are dying, but cannot communicate this. Often dementia patients do not die peacefully, but asphyxiate because they forget to breath or have pneumonia.
  2. Become an expert at Social Security, Medicare and Medicaid. Being educated about benefits and programs to help your loved one will help both of you. It will help you prepare if you are audited to account for your loved one’s medical, housing and other expenses.
  3. Paperwork. You will have tons of paperwork due to tip #2. Be prepared to open all of it and learn about the rules, regulations and expenditure tracking required for care.
  4. Lawyer up. This is important for power of attorney to make decisions like not to resuscitate or donate a body to science.
  5. Expect support in the beginning. People will rally and help during a time of crisis, but since this disease can go on for years, people will stop helping as often. It is also hard to witness the decline in health of your loved one.
  6. Don’t expect royal treatment. Nursing homes will not provide the loving care like you would. Expect mediocre food, social inattention and lackluster hygiene.
  7. Don’t blame the staff. Most health aides and CNA’s are underpaid and overworked. The aides will do the best they can, but the nursing home is about profit and there is high turnover and burnout.
  8. Detach yourself. There will be times when you want to run away, take a break or just wish the person would die. Take a day off when you need it.
  9. Become less sensitive to odor. Your loved one will eventually forget to brush his or her teeth and as a result will have severe halitosis. It is part of the disease.
  10. You are not alone. You will feel sad, angry, lonely, lost and depressed. You will do your best to take care of your loved one, but these feelings will come up. Reach out to your support group and friends to help you get by.

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