It is not unusual for families to be separated by long distances. We keep in touch with phone calls, Facetime, and various other electronic media between visits. While not as easy as living in the same area, it is the only option for many families today.
But what happens if your parent or loved one develops dementia? How will you monitor them for safety and health? How will you assist with caregiving? Dementia is progressive, so there will be different needs depending on what stage your family member is in. Their needs will change with the progression of the disease. In other words, you must continuously adjust your caregiving to meet their changing status.
In the early stages of dementia, you might not even recognize the signs. Your loved one may be aware that they are changing but not understand why. They may be embarrassed that they are making “mistakes” or forgetting things, so they don’t tell you.
Watch for things like changes in the appearance of the home, changes in hygiene and grooming, lack of participation in activities that were important to your loved one, and social isolation. When you talk on the phone is it a one-sided conversation? Is your parent talking about their life in simple general terms or can they relate specifics about activities they attended or projects they are working on?
If you have concerns, when you visit next, check things like the supply of healthy food in the house. Check for spoiled food. Check the upkeep of the home. It should be reasonably clean and the yard should be in order. If there are concerns in any of these areas, you will have to determine if the cause is because it is too much for them physically or if they are unaware of a problem and this is an early start of dementia.
If your elderly parent does have the beginning of dementia, these are some things you can do to help:
- Arrange to take your loved one to meet with their primary physician. You and your parent can discuss your concerns and you will be able to start a relationship with the physician. Have your parent sign a release form to allow the doctor to share information with you. Discuss what your loved one’s wishes are regarding prolonging life. Do they want to change their medical status to exclude CPR?
- Meet with other family members and close friends in the area to discuss care of your loved one. Find out how much help they are prepared to give. At this stage, you may just want more frequent checks on your family member, or an occasional meal prepared. It may be that they can help by providing transportation to appointments to the doctor or dentist, or for haircuts, etc. You will need to have this information so that you know how much outside help will be needed now and in the future.
- Have your loved one take you to a destination they are familiar with and have them drive. This will give you an idea of how safe they are behind the wheel. Evaluate if they are still able to get to their destination without getting confused, and if they are driving safely. Determine if they should continue to drive at this time.
- Evaluate the home for safety. Make sure the stairs have railings, and that there are grab bars in the bathroom. Check for working smoke detectors. Consider employing a medical alert service, which is a device worn by your family member at all times, to get help in an emergency by simply pressing the button.
- Have yourself or another trusted family member added to your parent’s financial information. Meet with their bank or financial advisor to allow you access. You may also want to meet with the lawyer to make sure all is in order for when your loved one is no longer competent to handle their own affairs.
- Consider professional dementia caregiver help. Depending on how much family support is available, and if it is the goal to keep your loved one in their own home, you will need outside help eventually. You may only need respite for the primary family caregiver, or you may have to rely on professional dementia care assistance from the beginning. Whichever the case, the sooner you start the better.
If you have a dementia caregiver early, it gives your loved one an opportunity to adjust to having someone assisting them and to develop a relationship with the caregiver. Another advantage is they will have a care manager evaluate your loved one to help determine what level of help that is needed and how often.
- Arrange to have regular scheduled updates from caregivers, both family and professional. Have a listing of all phone numbers for emergencies. Let neighbors know what is happening with your loved one and give them your phone number so they can contact you with any concerns. Ask for their number, as well, so you can contact them.
When your loved one reaches the middle to late stages of dementia care, it will no longer be safe for them to be alone. They will need 24/7 around the clock care. Hopefully, you have determined whether that care will continue to be provided in the home or if they will be moved to a nursing home environment.
If you arranged for a dementia caregiver through an agency, they can continue to care for your loved one in the home. If the primary caregiver is a family member, try to provide as much respite for the caregiver as possible. It is very stressful to care for someone with dementia. The dementia caregiver is at a high risk of burnout. Give as much support as possible to the family caregiver by providing days off each week and a vacation schedule.
The diagnosis of dementia is the start of a journey for the person afflicted and for all their friends and family. Each person will be affected in different ways and at different rates of progression. Prepare for the bad days. Be ready to take care of your loved one in every aspect of their lives. Cherish the good days.