Caregiving for Your Spouse - FAQ

1.    Are spousal caregivers more prone to caregiver fatigue?  Yes, spousal caregivers are especially prone to “burnout” because the significant changes in the marital relationship can sometimes leave the spouse giving the care feeling overwhelmed and stressed. This can also be compounded if the caregiver is also taking over responsibilities that were once handled solely by their ailing spouse, from cooking and doing laundry, to balancing the checkbook and heading up the financial decisions.   There can also be a sense of loss, especially if your spouse suffers from dementia or Alzheimer's disease. Or, if activities that once provided pleasure and deepened a sense of connection may no longer be possible. As a caregiving spouse, you may begin to feel very isolated from friends and feel tremendous guilt about your own unmet needs. Subsequently, you take on this "labor of love" and let your own positive health habits drop off to the side, putting your own health at risk. 

2.    Are spousal caregivers’ mental capabilities at risk?  Yes, in fact, the Journal of American Medical Association reports that if you are a spousal caregiver between the ages of 66 and 96, and are experiencing ongoing mental or emotional strain as a result of your caregiving duties, there's a 63% increased risk of dying over those people in the same age group who are not caring for a spouse. The combination of loss, prolonged stress, the physical demands of caregiving and the health vulnerabilities that simply come with age place an older spousal caregiver in a danger zone.    

3.    What are some of the signs that a spousal caregiver is experiencing burnout?  Spousal caregivers need to know and recognize the symptoms of burnout and how best to cope. It is a state of physical, emotional and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need or if they try to do more than they are able -- either physically or financially. Here are some specific signs:

  1. Missing or delaying your own doctor appointments 
  2. Ignoring your own health problems or symptoms 
  3. Not eating a healthy diet for lack of time 
  4. Overusing tobacco and alcohol when you feel stressed 
  5. Giving up exercise habits for lack of time 
  6. Losing sleep 
  7. Losing connections with friends for lack of time to socialize 
  8. Bottling up feelings of frustration and then being surprised by angry, even violent, outbursts directed at your spouse, other family members, co-workers - even strangers
  9. Feeling sad, down, depressed or hopeless 
  10. Loss of energy 
  11. Lacking interest in things that used to give you (and your spouse) pleasure 
  12. Feeling resentful toward your spouse
  13. Blaming your spouse for the situation 
  14. Feeling that people ask more of you than they should 
  15. Feeling like caregiving has affected family relationships in a negative way 
  16. Feeling annoyed by other family members who don't help out or who criticize your care.

4.    What are some of the long term effects of burn out?  Stress of spousal caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves. Also, spousal caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a spousal caregiver's life.

5.    What is the best way to prevent burnout?  Here are ten tips provided by the Family Caregivers Association:

  1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
  2. Watch out for signs of depression and don’t delay in getting professional help when you need it.
  3. When people offer to help to help, accept the offer and suggest specific things that they can do to help.
  4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
  5. There’s a difference between caring and doing. Be open to ideas that promote your loved one’s independence.
  6. Trust your instincts. Most of the time they’ll lead you in the right direction.
  7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
  8. Grieve for your loss and then allow yourself to dream new dreams.
  9. Seek support from other caregivers. There is great strength in knowing you are not alone.
  10. Stand up for your rights as a caregiver and a citizen.

6.    Why do some spousal caregivers have a hard time asking for help?  Because they feel that asking for help is a sign they aren't handling the situation well. But the truth is…your spouse/partner will be in better hands if you, yourself have some help. It is important to have people to support you, while taking care of someone else.

7.    What are some preparations that a spousal caregiver can make to help ease the pressure?  Get papers and affairs out of the way: This seems to be a common-sense type of thing but it is one that is often put off until it is too late. If the spouse has Alzheimer’s disease and can no longer sign for him/herself matters are dramatically more complex. It is important not to just get a will made and signed, but to take care of all the other paper work. Mortgages and all debts should be caught up. You should consult with an experienced elder lawyer about the disposition of assets while your spouse is still considered legally competent. Make sure that you have other legal documents such as durable Powers of Attorney filled out for both you and your spouse. Without a durable POA you may have to go get a guardianship later in order to speak for your spouse and protect your spouse’s rights.

8.    What are some of the more positive aspects of being a spousal caregiver?  While caregiving can be a very stressful situation for many spousal caregivers, studies also show that there are beneficial effects, including feeling positive about being able to help a disabled spouse, feeling appreciated by the care recipient, and feeling that their relationship with the care recipient had improved.