You don’t have to be an expert to know that accidents, illnesses, and unexpected disabilities happen every day. In a single afternoon, one incident or diagnosis can turn a family’s life upside-down. And unfortunately, a tragic accident or diagnosis can transform what was once a fully independent family member into a loved one requiring round-the-clock care and supervision. For 80% of these people needing long-term care, the go-to solution is a family member or friend becoming that person’s unpaid caregiver.1
When you Become a Caregiver for a Disabled Spouse
Caregiving by the numbers
If you’re a caregiver for a loved one or spouse, you’re not alone. According to the National Alliance for Caregiving and AARP, 43.5 million unpaid people provided care to an individual in the last year. On average, these caregivers spent 24 hours per week taking care of their loved ones—but that’s simply the average. One in four caregivers spent over the equivalent of a full-time job providing unpaid care (41 hours) per week.2
A caregiver will spend, on average, this amount of days each month on the following activities:
- 13 days on preparation type tasks (cleaning, laundry, grocery shopping and preparing food, transportation, distributing medication).
- 6 days on direct care for activities of daily living (feeding, dressing, grooming, bathing, helping them get around and use the bathroom).
- .54 days (13 hours) on finances, making doctors appointments, and researching services.
Source: Gallup-Healthways. (2011). Gallup-Healthways Well-Being Index.
Breaking down caregiving demographically, 60% of caregivers are female and 65% of recipients are female.3
Most caregivers (85%) care for a relative or close loved one, and 15% care for a non-relative.
- 49% care for a parent or parent-in-law
- 12% care for a spouse or partner
- 7% care for a grandparent or grandparent-in-law
- 5% care for an adult child
- 5% care for a sibling or sibling-in-law
- 4% Uncle or aunt
- 3% Other relative
- 15% care for a friend, neighbor, or another non-relative
Source: AARP Caregiving in the U.S. 2015 Report
However, these are just the cold facts of caregiving. If you’re currently facing the prospect of becoming a loved one’s caregiver or you’ve recently gone through such an emotional upheaval, you’re likely experiencing some difficulty. Here are some common experiences in this process.
The emotional side of caregiving
You and your care recipient will likely have a variety of intense emotional responses. This is normal.
Your loved one’s radical change, whether it's a spinal cord injury, chronic disease, loss of a limb, or any other number of debilitating circumstances, will undoubtedly test both of you. Anger and bitterness are to be expected, but you should also prepare to feel fear and anxiety that you won’t be able to physically or emotionally be able to handle your new stations in life.
You may mourn the loss of your loved one’s health as you struggle to adapt to the reality of your new future. Isolation is another common symptom, especially during the inevitable quiet times. You may also feel unbalanced because many of your own needs are now going unmet.
Adjusting to your caregiving routine
In the process of becoming a caregiver, keep in mind that adapting to a new routine will take time. As the caregiver, you will probably take over most, if not all, of the chores that keep a household in smooth working order. The division of labor (who does the laundry, cooking, cleaning, and so forth) will most likely fall on you. These added burdens pile on top of new responsibilities that arise from caring for your loved one.
Depending on the severity of their disability, you may also need to undertake personal grooming for them, administer pain medications, change dressings and bedding, and numerous other related tasks. Accept that things will not be easy. You may find it hard, but you will need to accept what has happened and embrace your new set of circumstances.
Considering professional help for the recipient
One of the major decisions you’ll need to make is whether to get a professional caretaker to help on an ongoing basis. Some people find it hard to accept that they can’t do it all, but for many, the sooner they realize just how difficult it can be to do it alone, the better their situation becomes when someone else steps in to ease their burden. You may feel awkward about asking for assistance, but it may be worth pushing through for your own stress relief.
Being a caregiver is taxing, and it can be detrimental to your own health as well. Consider these symptoms as legitimate reasons to seek outside help.
- Not eating due to a lack of time
- Losing sleep
- Getting out of your exercise routine
- Drinking too much alcohol or using drugs to dull your pain
- Feeling depressed or hopeless
- A loss of energy
- An inability to feel joy or happiness with things that you normally do
- Resentment toward your care recipient
- Ignoring your health problems and doctor's appointments
- Not connecting with friends in your social network like you have in the past
Many of these are normal reactions when a loved one becomes ill or disabled. But keep in mind that you are not only their caregiver, you are also your own caregiver. And unfortunately, you can’t be a good caregiver for someone else if you can’t take care of yourself first—so be sure you’re still meeting your own needs too!
Alternative options to help take care of your loved one
If you are currently in this situation and you don’t know what to do, consider hiring someone to help with your caretaking responsibilities. You could even look into long-term care insurance. Or, if you have limited resources, Medicaid may help you pay for a nursing home. You may even be able to get help from your community or church.
No matter what you choose, if you are someone’s primary caretaker, you don’t necessarily have to do it all by yourself.