How to Begin Advocating for Your Parents' Health Before and During Nursing Home Care
Why YOU Have to Assert Yourself in Becoming Your Parents' Advocate
After my Mom had her stroke 11 years ago, my Dad became her advocate and nurse and main caregiver. Although Mom lived less than a year, I was grateful we didn’t have to place her in a care facility. This experience, however, took its toll on my Dad’s health. One month after Mom passed away, Dad was diagnosed with prostrate cancer. Grief stricken, he ultimately received treatment and the cancer was reached in time. Dad also had kidney disease and in time, the only alternative he had for a solution was to start dialysis. He would travel to the hospital three times a week and sit in a chair for four hours for treatment. Once he had his routine down and he began attending grief counseling, I was certain his situation was finally absent unnecessary stress. I felt as long as his medication was being monitored and family was checking on him, there would be continued improvement.
In 2008, it became harder to get a hold of my Dad. His phone stopped working and he didn’t use a cell phone. I drove over to his house and that’s when I was aware something was terribly wrong. There was debris all over the house and unopened mail and newspapers everywhere. My Dad was a very meticulous man and a perfectionist on top of that! Then, I began to notice just in conversation that he was repeating himself a lot. I began to research dementia and made more frequent trips to the house. I asked him if he was taking his medication and he indicated he was. I asked him if he was going to his dialysis treatment and he said he was. Little did I know, at the time, was medications were being overlooked and he was missing some of his treatments. One afternoon, I received a call from a hospital informing me Dad was in ICU after having driven his SUV into a pole in the middle of the night (he fell asleep). He was disoriented and at best, he thought he was going for a dialysis treatment. In reality, though, he did not know where he was going. That’s where my lesson began.
Dad was never allowed to drive again and he never got to see his house again. He was transported directly to a care center from the hospital. I moved out of my apartment and moved in with my son and his family since they were five minutes from the care center. My dad’s kidneys were failing and he was in the early stages of dementia.
When your parent becomes very ill, if there is not a healthy spouse to help as a caregiver, it falls to the children and it is usually the oldest daughter who begins to manage the care. This management, though, is so necessary. Since this was my first experience with this type of situation, I had to make a checklist. I had to know all the medication Dad was on, what insurance he had including his Medicare information. If your parent(s) are still in good health, in preparation for the time when they become challenged with health issues, I suggest you perform the following:
- Go to a free consultation with a lawyer who specializes with elder care.
- Bring up the subject of healthcare with your parents. This doesn’t have to mean you talk about the subject of death because a lot of people have fear of this subject. Communicate your willingness to help when that situation arises.
- Have your lawyer draw up a Durable Power of Attorney that includes your ability to make decisions regarding finances and medical decisions. Also have a Living Will prepared. Sometimes hospitals will have a general form of a Power of Attorney as well as a notary on staff if you are not prepared. I would urge anyone I know to obtain the Durable Power of Attorney because it covers many subjects such as financial institutions, real estate, and medically related subjects.
- If your parent (like my Dad) was retired from the military, then you will need to fax a copy of your Durable Power of Attorney to TRICARE which is the entity resource for military medical benefits.
- When you have the Power of Attorney, a faxed copy will also need to be provided to every medical provider in order for you to secure medical information. Likewise, a copy needs to be faxed to the Social Security Administration if you are taking care of your parent’s finances.
- Although, I did not have the fortune of knowing what my Dad’s wishes were—death was a subject neither of my parents ever wanted to discuss—I was able to secure my Dad’s signature on a Living Will. Once he was placed in a care center, I told him I would be with him every step of the way to ensure he was not forgetting any detail, that his medications were being monitored and that he received appropriate transportation to the dialysis clinic.
Here are some additional documents you will want to know are accessible. The best thing to do is to make copies:
- If your parent owns the house lived in, make sure you have any paperwork relating to the mortgage.
- Make sure you have a list of bills such as credit card statements.
- Know where your parent's Income tax records are kept.
- Do your parents have any trusts?
- Lastly, if your parent was in the military, you will either need his or her marriage license or divorce paperwork.
Once you have your parents’ information related to insurance, medications, health history, and powers of attorney, safeguard this information because you will need it. That way, too, if you have any emergency arise such as I did, you will be prepared to answer questions like, “What medications does your Dad take?”
Research your parent's health issues
In my case, I became more educated with dementia and kidney disease and I asked many questions. I also kept a log of this information, so I could keep up with communications with all medical staff including doctors who were involved with Dad's care. Once my Dad was in the care center, I most definitely monitored everything. I would show up when not expected; I would routinely visit.
If your parent doesn't know what questions to ask, then that becomes your necessary role. And then there are the follow-up questions. Your role becomes two-fold in a sense. In one hand, you are the advocate for your parent and in the other, you become their voice. Do not be afraid to ask questions.
Keep monitoring your parent's progress or write in your log any new or unordinary symptom you see that you didn't notice before. My Dad had three falls and one of them is still questionable as to how it occurred because there was no nurse with him at the time and there should have been.
- Elder Care - Overcoming the challenges of long term elder care
Elder Care - First Steps: A walk through the first steps of your journey through elder care. It is intended as a primer ... a source of both information and comfort.
Medicare, Medicaid & Home Health Care
Become familiar with your state's different types of home health agencies and if they are certified by Medicare because they can then provide services to you under Medicare and Medicaid. And you will learn fast enough how complicated all the paperwork is and services or items not provided or covered when it makes more than perfect sense that such items should be. For instance, a wheelchair is not covered if you are in a care center in the rehabilitiation department. I never could understand this measure when it was obvious my Dad could no longer walk.
When Dad was caring for Mom, there were several services that were covered such as a speech therapist and an occupational therapist, both of which could visit the house two to three times a week. Once they determine the patient has reached full capacity, or the best condition reached, the treatment and house care ends. Since Mom had a stroke, a lot of the home health expenses were covered. It was conditional, however, because Mom was unable to leave the house independently and she qualified for Medicare benefits and she was under doctor's care. If a doctor writes a script indicating a service or equipment is necessary, this aids in the process.
For more information about Medicare, see www.medicare.gov which is the main source for Medicare.
Long Term Care
If your parent does not have long term care insurance, then retirement pay goes to the care center and you will want to see as soon as possible if your parent qualifies for Medicaid which will help pay for the cost (coupled with the retirement pay) because there is a two-month waiting period. Part of the criteria involves assets. This is why parents start moving their assets over to their children. Anything that is transferred five years prior to applying for Medicaid, it is not considered an asset. What I always found interesting was how would one be able to determine when that five years should start? Finding a facility that accepts Medicaid, however, is challenging. In an average care center, both Medicare and Medicaid is accepted. The bonus is if your parent has an additional policy of health insurance that is sister to Medicare.
Information related to Medicare and payment directed to nursing homes (I prefer calling them care centers, sounds more dignified)
- Medicare.gov - Paying for Nursing Home Care
Gives basic information about Medicare, Medicaid, and Long Term Care Insurance as they pertain to Nursing Home Care.
Center for Medicare and Medicaid Services (CMS)
- Medicaid Information for States, Providers, and certain Low-Income Individuals and Families
Navigational home for Medicaid-related topics in the CMS program, including links to Coding, Enrollment & Coverage, Eligibility, Fraud & Abuse, Medicaid Initiatives, and other important topics.
I hope this information helps someone who is having a health related experience with their parent. After helping my Dad for two years until his passing in 2010, I have also learned that you need to lean on those who are willing to provide you emotional support. We were blessed to have Dad entered into a local hospice house. They were angels on Earth. It is an emotional and challenging experience to care or monitor care for a parent. At the end of the day, though, you will not have one single regret and it will ease in the pain of losing a parent or loved one. Just remember that you also need to take care of yourself too.