Thank you, dear readers, for the condolences and feedback on my recent column about my father’s death.
It is a comfort to know I am not the only one grieving a loved one lost to dementia and that I was not the only one to struggle through such a difficult chapter. Caring for a vulnerable family member is the hardest thing I’ve ever done. And, like you, I bear the scars.
The heartbreak of dementia is compounded by an oxymoronic health care system that can quite effectively keep a person alive in body but do little to stop the erosion of their independence, life savings and joy.
If you are already caring for a loved one, you know this. It is for those on the precipice of this journey that I write this follow-up column.
As you enter this chaotic, complex world, be ready to gather as much information as you can. You must remain vigilant. That means whatever route you take — homecare, assisted living, supportive living, skilled nursing — you will still need to pay attention, be there and follow through on concerns and complaints on behalf of your loved one. Dementia is not a reason to disregard a person’s narrative or quality of life.
The first step, of course, is to assess your loved one’s needs, finances and comfort zone. Be sure to fill out the latest version of powers of attorney forms for both property and health care. We had a lawyer help us. Also, make sure your loved one’s last wishes are known and documented through Do Not Resuscitate forms and/or a living will, such as Five Wishes (www.FiveWishes.org).
Once you determine your path, find the help you need.
The Illinois Department of Public Health handles licensing and inspections for skilled nursing homes and assisted living facilities in Illinois. For information, go to dph.illinois.gov/topics-services/health-care-regulation/nursing-homes/selection.html.
Medicare also provides basic information and recent ratings on both facilities and home health care at www.medicare.gov.
For low-income individuals, supportive living facilities may be a choice because they offer transition to Medicaid. For more information on the Department of Healthcare and Family Services, which inspects and oversees supportive living facilities in Illinois, go to hfs.illinois.gov/medicalprograms/slf.html.
Caregiving is tough physically and emotionally. You may be abandoned by certain family members who cannot or will not help. Don’t waste your energy. You will find support from veteran caregivers. Their stories will be sobering but their problem-solving skills will be inspiring.
Eldercare is a maddening world that will at times leaves you feeling alone, afraid and demoralized that you didn’t know something or that you believed a bald-faced lie.
Before you choose a facility, ask a million questions. Is the staff qualified to provide the services they promise? Is there enough staff? What kind of safety precautions are in place? Be very specific about your loved one’s needs. And be sure to ask what happens if those needs change.
Facilities have been known to send residents whose needs increase to a hospital emergency department, and then decline to take them back. My father was basically kicked out of his home because his needs increased. Yes, there are state regulations regarding the level of services different facilities can provide but do you know how heartbreaking it is for a compromised older person to find out at the hospital that he cannot return to the place he calls home?
Communication is not a strong point at many places. Just because you are his power of attorney does not mean staff will inform you when he is sick, not eating or refusing a vaccination simply because “no” is his default when asked a question.
Label everything, including cans of diet Coke and pairs of socks. It seems petty. What kind of person complains about missing soda or socks? Then again, what kind of person takes an old man’s soda or socks?
Costs can escalate quickly. We started paying $5,100 a month for two small rooms, and in less than two years were looking at $15,000 a month for a bed and portable closet. Yes, my father’s needs increased, but what older person’s needs don’t? To a man who drove a truck for a living, the thought of paying $180,000 a year would have put him in the grave, if other things hadn’t gotten him first.
As depressing a world as eldercare can be, there are pockets of warmth and comfort. There are staffers who truly care. Hospice is amazing. Befriend the kind ones and try to overlook those who are simply watching the clock.
It was a monumental effort to bring my dad to a restaurant or even my house. It took two adults to transport him. Still, we did it on many occasions. He enjoyed the outings and I am enjoying the memory of those outings.
Tend to yourself. Caring for someone else can seem like a thankless job. Your loved one may yell at you or call you names. You will watch him decline, shrink, withdraw. It is a humbling, helpless thing to witness. Exercise helped me relieve stress. I also put together a playlist called “Leaving Dad’s.” Blasting commiserative music can give you the resolve of a 16-year-old again. That can be cathartic.
When the book closes, you will be left with a thousand what-ifs. Take comfort in knowing you were there through the best and the worst, and that you stayed to the very end. Being there is often the least, and sometimes the most, you can do.
The work is difficult. The system is complicated and unfair. But know you are not alone. After my recent column, I received dozens of emails and messages from people who are in the same situation. Comfort and advise others who are just beginning the journey.
And remember, you can do this. Because someone desperately needs you to do this.
Donna Vickroy is an award-winning reporter, editor and columnist who worked for the Daily Southtown for 38 years.
