For the last several months, Dad has needed help with medication and toileting during the night most of the time. Some nights he only needs help once, other nights it is several times. Surgery to remove his bladder tumor did not help with the incontinence. A new medication has improved the problem, but not eliminated it.
Last night was one of the more difficult nights with Dad getting me up every 2 hours for a 6 hour stretch. Needless to say, I’m a bit of a zombie today. I have been invited to a Halloween party this evening with a few friends, and I hope to be able to attend. I’m considering dressing as a zombie.
When Dad doesn’t get enough sleep he has difficulty during the day. His Parkinson’s disease symptoms are made worse, and he also has daytime somnolence. No surprise there. However, when he is struggling, he requires more hands-on care and this contributes to fatigue for the entire family because my husband attempts to assist me. Based on conversations I have had with other former caregivers, this is not an uncommon problem.
Social workers, physicians, and guides on caregiving stress the importance of getting enough rest. They suggest respite care to prevent caregiver burnout. Most suggestions center on hiring respite care or asking family and friends for support. While experts are correct about the link between sleep and good health, their well-intended suggestions fall short of reality.
Most Americans do not save enough money during their working years to pay for their infirmity, although there is some evidence that this is due more to an overly expensive for-profit infirmity industry than lack of thrift. The US also does not have a very comprehensive social support system. The result is that seniors can burn through their retirement savings fairly quickly enjoying retirement and paying medical bills. When this happens, they rely on Social Security to cover living expenses, which typically is not enough to cover the cost of professional care facilities. This point is when parents move in with their children and the caregiving cycle with its domino effect on the family begins.
With professional respite care costing $25 per hour, most families and seniors are not in a position to purchase much of it. Relying on family and friends is difficult because they may be working when you need help, or sleeping at the same time you wish to do. In a large country like the US, family and friends are often spread out over large geographic distances. While I have family who might be willing to help, most of them live out-of-state and it simply isn’t practical to ask them for assistance. Also, it seems a bit much to ask others to help change soiled undergarments in the middle of the night for free while I sleep.
We are fortunate to receive 6 hours of sliding scale respite care per week provided by Senior Services and Washington State. We elected to use that on Sunday afternoons so my husband and I can have time off together. This relieves some of the stress on our marriage. Dad is also generously provided 20 hours of respite care per year by the American Parkinson’s Disease Association. These services are very welcome, but cannot hope to provide the amount of relief necessary to prevent sleep deprivation.
Moving an elderly relative to a facility that can offer them the 24 hour care they require ends up being the only realistic option over time. However, this is horribly expensive. Assisted living facilities run $3500 per month and nursing homes cost $7500 per month in the Seattle area. Medicaid ends up being the only option for care, which limits the number of facilities a family can choose from to place their parent. In addition, as the number of Medicaid recipients rise, the available slots in nursing homes decrease. In some areas, the wait list for a nursing home slot is 1-2 years. This means that even if a family needs to move an elderly relative, it won’t happen for an extended period of time.
Medicare will pay for 60 days’ worth of nursing home care if the patient is transferred directly from a hospital for rehabilitation. But again, many of these slots are also filled. The result in this situation is that hospitals “board” the patients for a month or two, sometimes in corridors due to space restrictions.
In every instance, providing care for the indigent elderly is a challenging problem. States that provide Medicaid nursing home care are struggling with cash problems, and are apt to be resistant to moving the elderly to care facilities. As one social worker told me, “our mandate is to keep people out of nursing homes. That’s why we place people with family whenever possible”.
The federal government is heavily in debt. Entitlement programs like Social Security and Medicare already eat up 20% of the federal budget and will continue to rise in the future, squeezing out other federal budget money. These programs are also set to go bankrupt in the near future without Congressional intervention to overhaul the federal budget and rescue the entitlement programs. With a current Congress that excels at stalemates, it seems an unlikely bet that the entitlement programs will be addressed until the last possible minute and possible only with a band aid approach.
Despite the gloomy predictions, I do not believe that the problems are intractable. What society needs is a reassessment and reworking of existing strategies. Policy makers, welfare experts, and taxpayers are reluctant to try new approaches because they fear of expending precious monies on an uncertain outcome. In such a case, it might be better to try a series of pilot studies to determine strategies that will work for the long term benefit of the country. Here’s a few ideas that lend themselves to pilot studies:
- Develop respite care coops similar to preschool coops
- Retrain long term unemployed workers to work as respite care givers
- Test out AI and robotic technologies that can relieve caregivers for short periods
- Set up caregiver education programs in developing countries, and provide 5 year visas to graduates to provide care in the US