Are you or someone you know giving daily care to a spouse or loved one with dementia, physical infirmities, or both? If so, sooner or later you will most likely experience some form of caregiver stress. “Hear me?” “Hear me?” “Hear me?” That repetition of words was annoying for you to read. And annoying for me to write. But if you have a spouse with dementia that follows you around all day and repeats everything over and over, the stress creeps up on you.
When asked if they feel stress, most spouses and other caregivers will say, “Oh no. I can handle it.” Most spouses are going above and beyond what they can be expected to do, but they will deny it is too much for them. One client finally admitted she could no longer be the sole caregiver for her husband after she tried to stop him from falling down the stairs and he fell down on top of her breaking her leg and arm and sending her to the hospital. Another sat in my office after losing more than 20 pounds, developing colitis, and losing concentration on doing simple tasks. It didn’t take a doctor to figure out the problem. She had caregiver burnout. The simple truth is that two sick spouses are far worse than one, because then the really sick one may end up in the nursing home.
Signs of caregiver stress are anxiety, depression, exhaustion, irritability, lack of concentration and stress related health problems. The key is to seek a solution early. And that means finding and accepting, some outside help. Getting help earlier, rather than later, goes a long way to prevent the buildup of stress. There are numerous companies and associations that offer either advice, or help, or both.
For example, the Alzheimer’s Association has informative literature on how to be a healthy caregiver. Key tips are: find out what resources are available; be realistic; do legal and financial planning; give yourself credit, not guilt; and get help. Even if that help is only one or two hours a day, that can be the caregiver’s needed relief from the incessant demands of a spouse with Alzheimer’s.
Getting help has two aspects. Finding the right kind of care, and figuring out how to pay for it. Does your loved one simply need a companion for safety, or more significant help with bathing, dressing, toileting or taking medications? Companions are caregivers who do not give physical help. They can cost from $9 to $12 per hour. Home health aides give physical help, and can cost from $18 to $23 per hour. And nurses are significantly more. Having someone come in the home is an intrusion on your personal space, so that is also a consideration. It becomes a serious issue when the caregiving spouse knows outside care is needed, but the sick spouse refuses to have a stranger in the house.
Figuring out how to pay for the care is where comprehensive advice is critical, because there are at least three main programs for home care under the Connecticut Home Care Program for Elders, the highest level being Medicaid (Title 19) which can pay up to $5,598 per month, and a Veterans Administration program called Aid and Attendance which can pay up to $1,949 per month.
The qualification requirements for these programs can be difficult, and may conflict with each other, but with proper planning and accurate applications it is often possible to get significant care at home and avoid caregiver burnout. A blog with useful information can be found at TALKELDERCARE.COM, which is presented by the Life Care Planning Law Firm Association. It deals with elder care issues. Another is the Alzheimer’s Association website at www.alz.org, which deals with Alzheimer’s and dementia related issues. Still another is the National Care Planning Council website at www.planforcare.org.
So be informed and take care of yourself. Your loved one and your sanity depend on it.