In the United States, approximately 80% of care for the elderly is performed by family members, including spouses and adult children. One out of every four household provides some form of senior home health care, a number that is continuously expanding.
Many of our client families come us in distress after attempting to provide adequate senior care to an aging parent or loved one directly and finding it unsustainable. While we are happy to assist, our foremost concern is the safety and wellbeing of our neighbors. If you or a family member are caring for an elderly relative, below are a few tips that will help create a more successful outcome:
Tips for Providing the Best Care
- Study up on your loved one’s specific condition and specialized care recommendations. Get familiar with medical terms, medication names, treatments (including potential side effects) and the likely trajectory, including any warning signs of deterioration. This will help you when speaking with doctors and other medical personnel. The 36 Hour Day and Passages in Caregiving are excellent resources for a new caregiver of someone with cognitive impairment, dementia, Alzheimer’s or Parkinson’s Disease.
- Learn faster by attending a Caregiver Support Group. The Alzheimer’s Association, Senior Community Services organizations, Adult Day Care Centers, and Assisted Living Facilities can all provide information on local options. Some support groups are for both the caregiver and the care recipient, which can help both parties navigate the new relationship.
Besides practical information on how to manage eldercare, support groups for primary caregivers can help you understand your own complicated feelings about the situation. Many of the best suggestions in support groups come not from the facilitator but from listening to the experiences – what has worked and what hasn’t – of other participants.
Tips for Staying Organized
- Make a list, including phone numbers, of your aging family member’s doctors, pharmacy and medications. Create another file with all important documentation and information about your loved one, including but not limited to: their date of birth, Medicare and Social Security numbers, Living Wills or Advanced Medical Directives/Surrogates, financial planners, power of attorney holders, eldercare lawyers, insurance companies and policy numbers. Having their information in one file will be very helpful every time it is needed and will save you time and aggravation.
- Try to use as many non-mental tools as possible. Use a calendar for medical and other appointments. Make a list or two of what you need to do or buy or organize. It is vital that you reduce the stress of care giving by putting in systems in place that allow you to have to actively juggle less in your head.
Tips for Ensuring Safety
- Ensure that you have the right equipment on hand. Many of these are Medicare-reimbursable expenses with a physician’s prescriptions. Depending on your loved one’s needs, these items might include (note: links included for illustrative purposes, not as an endorsement of any retailer): a Toilet-to-Tub Transfer Sliding Bench, an Adjustable Bed, Seat Cushions and Mattress Pads and a Fully Stocked First Aid Kit.
- Begin the process of organizing your parents’ home. We all know how it’s easy to accumulate a garage or attic full of stuff over a couple of years, so it’s not hard to image the amount of “stuff” that may be in our parents’ homes. You can start removing the clutter from their home by discarding expired food, newspapers, clothes and linen they don’t use, items in the kitchen and garage, etc. Start on the top floor and work your way down to the basement. Tidying up like this is not only an activity your loved one can assist in and may stimulate interesting conversations, but – more importantly – it will likely help make the home safer for your loved ones.
- Trust yourself. You know the person best and have the most invested in their care. Follow up on your intuition with their doctor if you feel something is amiss. Get other opinions if you feel adequate attention and care isn’t being provided by the professionals.
Tips for Maintaining Agency
- Motivate the person in your care. There are likely things they can still do for themselves. Let them make the choices for themselves that they can. Remember, a person with a disability may need some help but can probably do things for themselves, as well. Responsibility is tied to capacity or ability. It can be hard, but try to find the balance of letting them do what they can for themselves and not expecting them to do what they no longer can accomplish due to their disease progression.
- Find an opportunity to discuss your parents’ wishes and desires for circumstances under which they become unable to communicate those preferences. A program like Five Wishes can help. It’s important to keep the family involved in this process so everyone can be aware of the wishes of their elder loved ones and understand the role they play in the process, in the event that anything happens. This can also help strengthen family bonds and avoid discord arising from assumptions that the caregiver is driving the decisions.
Tips for Staying Sane
- Get out of the house daily. Even the most gorgeous home becomes oppressive if you never leave. You do not need to have all day marathons of activity but do one thing outside of the house a day. It might be daunting to take your charge out daily but if it is physically possible it is good for you both. Visit the Library or grocery shop or go to a social club. Consider an Adult Day Care Center as a respite option that your relative might look forward to.
- Take care of yourself. Eat nutritious meals. Don’t give in to stress-driven urges for sweets or overindulge with alcohol. Get enough sleep. If you wake at night, try napping during the day. Get regular medical checkups. Exercise, even if it means finding someone else to provide care while you walk or go to the gym. If you experience symptoms of depression—extreme sadness, trouble concentrating, apathy, hopelessness, thoughts about death—it could be an illness requiring treatment. See a doctor right away.
Take time every day for yourself. When your parent is safe and occupied, take a few minutes minutes to leave. Even if you can’t go too far, a walk around the block or enjoying a few pages of a book will help relieve frustration and stress. Try as hard as you can not to multitask. If you worry about losing track of time, set a timer so that your brain can go “off the clock”.
- Seek out help to share the responsibility among other family members and arrange time off for yourself. (As an aside, if sharing the responsibility among family members is not an option, consider discussing a fee paid by family members for your overrepresentation in caregiving, which can serve as a form of recognition and stave off resentment.)
Create a list of your “caregiver support team”. Before you can ask for help, you need to know who you can ask, and by planning out a list before you even need to utilize it, you will avoid the stress that arises in trying to scramble in response to emergencies.
There are also many community resources that you wouldn’t know about until you look. These may include modes of transportation, volunteers who can provide respite services, and nutritional support to which your aging relative may be entitled. Get referrals to such resources from your parents’ doctor.
- Keep your social life. Just like getting married or having a baby, becoming a caregiver is one of those times in life that people tend to disappear from friendships. Make time to see your friends and fill in the gaps with phone calls or Facebook. It is important to have people to talk to about your problems – and, frankly, to talk to about any but those problems. Be open to new friendships with people around you whom you wouldn’t have otherwise met – in a caregiver support group, or in hospital waiting areas, for example.
- Acknowledge that you cannot do it all yourself, and keep reaffirming as much to yourself. Family caregivers are very often at more risk of their own health than the person they are caring for due to stress and exhaustion. No matter how strong and well-meaning you are, you have limits. If you burn out and collapse, there will be two people requiring help. Accept your limits and care for yourself.
Once you have been in the role of the caregiver for a little while, you will be more attuned to what the position demands and what you can and cannot do well. Do not be afraid to pivot, reshuffle roles or otherwise create a more sustainable routine.
Share your triumphs and failures with those who love you. Every caregiver needs their own support network.
- Understand that at some point in the future, more care may be needed. This is simply a fact of degenerative diseases. Your loved one may need a team of people to care for them rather than a family member. Familiarize yourself with the professional options available, ranging from geriatric care management to respite care, from a few hours a day to assist with household chores to the potential need for an assisted living environment.
If your loved one lives in South Florida, do not hesitate to reach out for further guidance on resources that are available for family caregivers or general information on providing home health care. For additional tips and suggestions, visit the bottom of our home page and subscribe to our newsletter.