Universal Caregiver Concerns - And What To Do About Them

by Senior Care Society on 07/06/2012 - 01:22 pm

Tag: Caregiver Advice

What do you do when illness lingers for many years? How do you manage the endless and extreme challenges of this unfamiliar life?  Along with everything you did before, you now have caregiving duties for which you weren’t trained, all the duties your sick spouse used to do -- along with household management, finances, sleep, sex/intimacy and the changes in and strains on your marriage -- all while bearing the agony of impending loss.  Although no two situations are alike, certain fears, worries and concerns are common for caregivers. These tend to center on intimacy, hygiene, money, decision making, disrespectful treatment, communication and strong emotions.


Typical Concerns


  • Doing something wrong that will cause your spouse to die.
  • Lacking skills or physical strength for caregiving.
  • Not handling finances and legal issues correctly.
  • Having terrible thoughts and emotions and not knowing what to do about them.
  • Not being able to handle the challenge of communicating effectively with your spouse.
  • Getting, or accepting help, and/or getting husbands to agree to it.
  • Husbands not sharing what’s going on in their heads and being frightened by that.
  • Wondering how can they still have a life if they’re taking care of him, and whether caring for him will be the end of them.


Meet Alice and Alvin


Alice is a real estate agent married to Alvin, a banker, who is dying of emphysema. He insists on his right to smoke, which is the topic of many fights. Alice juggles an unpredictable work schedule and her routine household duties along with caring for Alvin and everything he used to do. She’s getting sick and tired of and from all the work and stress.


Problems without solutions -- or so it seems


Distress doesn’t come from the list of problems, but rather from not knowing how to solve them. Wives avoid discussing difficult issues because they feel guilty, or they're afraid it will upset husbands, they think it won't make any difference anyway, or because they simply don't know how to do it!  But, issues absolutely need to be discussed to avoid damaging the marriage.  With a few simple steps you can create a far better outcome and your life and your marriage will not be over.


Identify and sort out your concerns.  Have a brainstorming session with yourself and write down, for your eyes only, all of your concerns and fears. Next, use a 4-category sorting process to decide which issues you’ll discuss with your spouse.


Alice’s fears and concerns:

  • Income stopping if she isn’t out selling properties.
  • Paying legal expenses so Alvin’s disability coverage won’t end.
  • Lacking skills or physical strength to handle the kind of caregiving Alvin will need as he deteriorates.
  • Handling communications with Alvin because he’s depressed and withdrawn and won’t talk about important end-of-life issues. Concern that he might commit suicide.
  • Alvin prohibiting “strangers” from caring for his personal hygiene, yet requiring Alice to change dressings, tubes and clean up his bodily discharges – while discounting her feelings.


Use easy communication tips. There are easy ways to make your discussions more effective.  Here are a few: reflective listening, where you repeat back to him what he just said, instead of interpreting (If you interpret what he says, it will stop a conversation dead in its tracks); using "I" statements (It’s more accurate, and effective, if you don’t assume he has the same need or problem); and speaking "his" language, which means structuring your statements in the way he will most easily understand them (If he's very reason- and logic-oriented, for example, you might ask him what he "thinks" about something, rather than how he feels.).


Learn how to raise these issues, discuss and create agreements. Set up a “talking date” with your spouse. With mutual respect and compassion, you will have effective discussions and create agreements that will make life easier - and make your life and your marriage work.  These understandings will let you remove the wedge that your concerns and fears placed between the two of you, and let you create a more peaceful and loving life for the time you have left together.



Diana B. Denholm, PhD, LMHC, has been a board-certified psychotherapist for more than 30 years. For 11 years, she was the primary caregiver to her husband during a series of grave illnesses. Her new book, The Caregiving Wife's Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself (Hunter House, www.caregivingwife.com), offers hope, advice, and resources for wives caring for husbands with long-term illnesses.