There are some important details that have to be considered before making the decision to provide care for a loved one on you own or hiring an outside caregiver.  For many of us, foremost in the decision-making process is the cost.  Depending on the number of hours per day required, and the level of care, hiring a caregiver can be very expensive.  Medicare does NOT pay for long-term in-home custodial care.  However, some long-term care insurance policies do pay for custodial care once a diagnosis and doctor’s orders for care have been reviewed and approved by your insurance carrier.  Read through your policy carefully to know under what circumstances your LTC policy will pay for services.

Research has provided us with some sobering statistics about family members assuming the role of primary long-term caregivers for a spouse or other family member.  In over 60% of the cases involving seniors, the family caregiver, usually the spouse, will predecease the patient. That’s correct, the patient outlives the caregiver who actually dies of stress-related illnesses associated with caregiving.  There is also strong research evidence that has shown that after the intense caregiving period is over, within 6 to 18 months, a high majority of caregivers will themselves become very ill – think of this as a post-traumatic stress-related illness, and another cost of caregiving.

So a dilemma comes into to play very quickly.  Can we afford to pay for outside services and if not, can we risk the health of mom or dad as the primary caregiver in a stressful and difficult situation?  Choosing to care for a loved one, while eliminating the cost of an outside care provider has other hidden costs.

With serious chronically ill spouses, the caregiving spouse soon finds that her or his social life – the bridge game, Bunko games, golf, lunch out with friends – soon falls away as the demands to provide the level of full time care begin to mount.  Social isolation is another hidden cost of becoming a caregiver.

Among seniors, some of our friends who used to stop by the house no longer continue to do so, and the reasons are clear. Many patients receiving in-home care don’t want to be seen at what they perceive is their worst.  It takes energy to receive visitors, and many patients just feel they’d rather be left alone.  Older visitors aren’t always comfortable around chronically ill people, and they often don’t wish to be reminded of their own frailties and mortality. And then there’s the stress on the caregiver who has to have the house clean, be showered, dressed and fresh to receive visitors. The caregiver is also responsible for having the patient cleaned up and presentable for visitors, and this aspect of caregiving is also a cost that takes its toll.

The concept of “us,” the feeling of being a couple can also become diminished as one spouse takes on the roll of care provider, and the other assumes the role of care recipient.  Anger, resentment, hostility, and depression are common emotional reactions that are felt by the caregiver towards the patient for having lost the “good” life they led prior to the illness.  While these are “normal” reactions that have to be resolved, they are often followed by feelings of guilt by the caregiver for having these feelings toward a person they love dearly.

These emotional roller coaster feeling can, over time, tear away at the fabric of the loving relationship.  They are also an indicator that even the most physically and emotionally strong caregivers among us requires “me” time and respite to be capable of continuing our duties.  This too is another hidden cost in the price of becoming a caregiver.

There are no easy answers, and for some of us, because of financial limitations, there may be few choices.  There are, however, caregiving strategies and plans, as well as ways to find respite though use of other family members, limited outside services and willingness to accept occasional help from agency and social services organizations in your area.

One suggestion, for those with access to a computer is the website www.caregiver.com.  There you’ll find information and helpful suggestions for caregivers, from caregivers like you. You’re not alone, and accepting assistance isn’t a sign of weakness.

Next time, we’ll talk about the pros and cons of hiring a private caregiver versus using a professional home health agency. Until then, be well and prosper.