We meet wonderful, dedicated people at caregiver support groups. We always learn something. Maybe it is how to move a person easier, or where the best care for a particular ailment is in our area. But often it is that caregivers are ferociously determined to give their loved ones the best treatment possible. And that they want to do this at home. And that they prefer to do it alone. We hear of their struggles—the falls, and the difficulty getting a loved one into and out of a chair; the difficulty getting him to the doctor or for regular tests. We hear of combativeness and see the bruises. We hear the stories about the caregivers bad backs, and shoulders, and hearts and other illnesses.
Especially, we hear over and over that no caregiver wants to place their loved one in a long term care facility. NONE of those places are good enough. NONE of them will give him the care the caregiver has been giving him. NONE of them will take the time for his various needs. Or if there is one that will do all of this, they haven’t found it yet, or it is too expensive, or…. As for in-home help, caregivers worry about having a stranger in their home. Who can be trusted? Or the loved one doesn't respond well to hired caregivers--strangers who don't know his special needs and quirks.
The bottom line is that placing this person that they feel totally responsible for into someone else’s hands is terrifying. The what ifs make it an awfully difficult task—often an impossible task. What if they give him a medication he shouldn’t have? What if he needs help and they don’t respond quickly? What if they can’t understand what he wants? What if ……? The list goes on and on in their head. “No, I can’t do it,” the caregiver thinks. “I can carry on alone for a while longer.”
But can she? Over and over, the statistics show that all caregivers are highly susceptible to debilitating illnesses, illnesses that will eventually take away their ability to care for their loved one. Even worse, an elderly caregiver is 60% more likely to die than a non-caregiver of the same age. SIXTY PERCENT! Over half. Then, the loved one is likely to go into a long term care facility because there are no other choices. And it will be without the all important caregiver’s support.
We’ve come to believe that the issue is much more than that of finding adequate, caring help, or a Lewy-friendly long term care facility, or even finances. We don’t discount those problems. However, many caregivers can attest that good, trustworthy help and facilities are out there if you look for them. Finances can be a major roadblock, but assistance is there also. There has to be something more, like the emotional attachment to the job, and of course to the loved one.
There is a lot of emotion invested in caregiving. There’s that terror of handing over a loved one to someone else is one I mentioned earlier, as well as many other strong feelings that surround the wish for a loved one’s well-being.
But we believe there’s more—and it often has more to do with the caregiver than the loved one. To ask for help may seem like failing, or like letting a loved one down, or even like letting oneself down. The loved one becomes a caregiver’s most valuable, most protected possession, and the job becomes her identity. How can she give this up, or even share it?
Years ago, I lived and worked in another state and visited my elderly parents a few times a year. My mother was already in a nursing home when my stepfather became ill and had to join her. My widowed sister, who was their primary caregiver, kept this a secret from me. Later, she said she was afraid I'd try to take over her job. I couldn't understand that then. Why would I, who could only visit occasionally, want to take over a job my sister was doing so well? The caregivers in the support groups we've visited have helped me to understand. My sister had been a caregiver for years, first of her husband, then of our mother and finally, of our stepfather. What I saw then as irrational behavior was fueled by fears she probably didn't even recognize--including the fear of losing her identity as a caregiver.
For a spouse, is sharing the intimacies of caregiving like sharing a marriage? Does it feel wrong, somehow to expose her loved one’s vulnerabilities to someone else? True, she believes that no one else can do as good a job as she can. She’s probably right—as long as she can do it. But what would happen if she were wrong? What if someone else could do a better job? Then, what is she? Chopped liver?
These are just ideas thrown out to explore. Do you relate with any of them? Or do you find yourself adamantly resisting any of these suggestions? If you do, think again—that may be the one that fits when you take the time to be really honest with yourself. Future blogs will be about how to know when it is time to get help—and what kinds are available.
Find more about LBD caregiving in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.