No Respite for the Weary

It is no secret we live in a growing and challenging aging population. While many age sharp and in good health thanks to advancements in health care, including the ability to diagnose and treat chronic illnesses early, there is still no cure for Alzheimer’s disease and other related forms of dementia. Trust me, it is a devastating reality for so many families; how to care for that loved one becomes an all-consuming task that is left either to the professionals in an assisted living or nursing home environment, or to family members.

Recently the state began offering incentives for home care to families who embrace the challenge. It was a great step forward — but it just got kicked in the teeth. Here is why.

My mother was diagnosed with Alzheimer’s in 2008. Our family chose to keep her home and do the best we could for as long as we could. When I left my job four years ago to become Mom’s primary caregiver, I had no idea how long she would survive, how long I would be able to physically take care of her, or how long I would be able to financially remain underemployed — all questions that remain to be answered. But help did come in the form of a state-funded stipend for caregivers trained and supported by agencies to oversee the care of those elderly and chronically ill who are eligible for MassHealth.

Mom was eligible, and I was accepted into a program administered through Caregiver Homes nearly three years ago. I have come to depend on the stipend to supplement my part-time work as a freelance writer. It helps me to sustain my home and keep Mom in it for what I hope is the remainder of her life.

And how does it help Massachusetts? Well, the math is pretty simple. My mother’s cognitive decline is such that I could not continue to have her at home if I were working a full-time job, so she would more than likely be in a nursing home at an average cost of $345 per day. My stipend is less than $50 a day.

In 2012 the Massachusetts Alzheimer’s Disease and Related Disorders State Plan estimated that in 2010 family members were delivering in excess of 360 million uncompensated caregiver hours to loved ones with an economic value of over $4 billion. It is simply fiscally smart to offer incentives through agencies like Caregiver Homes that also provide guidance and support proven to reduce unnecessary doctor and hospital visits, as well as the ultimate need for nursing home admissions. It has the potential to save millions in health care costs even after paying agencies to oversee the caregivers.

So you might think the state would support it more.

Well, guess what: We caregivers just got served the ultimate insult. A critical benefit of the state’s MassHealth-funded caregiver program is the ability to take up to 14 days of respite each year, during which an approved alternative caregiver is paid to look after the loved one, and the caregiver does not forgo the stipend.

I say critical because, as noted in the state’s 2012 report, 33 percent of family members caring for people with Alzheimer’s suffer from depression, and 61 percent of dementia caregivers report that emotional stress is high to very high. The stipend, support and guaranteed respite time improve the overall physical and emotional well-being of the caregiver. And still the state is paying far less than institutional care.

Last month I got a call from Caregiver Homes telling me that MassHealth will no longer pay the caregiver on days when an alternative caregiver is engaged. In other words, there will be no rest for the weary, no break for some of the most committed and hardest-working people caring for our elderly and needy citizens. Because, truth be known, many of them, including me, can’t afford to walk away and tend to their own needs without the financial security of the stipend.

Not only did the state take the respite away, it was done retroactively. So I was told on April 24 that six respite days I took earlier in the month would be unpaid.

“Really?!” I said to the woman in disbelief. “Did the state really just decide for me that I won’t pay my gas bill this month?”

I’m not sure how this is fair, but anyone who knows me knows I won’t walk away from a fight — and this is a good one.

Ironically, only a few days before getting the news about the respite rug being tugged out from under me, I had been talking to the Caregiver Homes case manager and nurse about what happens to people like me who give up careers to care for loved ones until they die. It is not lost on me that the day will come when Mom will be gone and, along with my grief, I will endure the burden that comes from a significant source of income suddenly disappearing with her. Because no taxes are drawn on the stipend, I won’t be able to collect unemployment. Also, because I have not been actively employed in some time, finding a position in a new job market where I am competing with Generation Z will be next to impossible. There simply is no safety net.

The nurse gave me a sad smile and said, “That happens more than you know.”

*Published in the Cape Cod Times, May 9, 2015