The last 3 years have been eye-opening. Dad had planned well. The plan was to live in their own home and bring in help as needed. However, things have not gone according to plan. The first year was extremely difficult. We sought information and advice from places we thought would be able to provide it. Instead, we were provided with resources but were left on our own in trying to figure out how they could help us.
Finally, after a desperate phone call by my Dad during Mom’s third hospital and extended stay, he was transferred to a social worker who had been following his case. Because Mom would become disoriented and begin hallucinating, she became a harm not only to herself but also to Dad. Several times emergency services had to be called in order to take her to the hospital for medical care. We still are not sure why the social worker didn’t reach out (DFACS policies?) but he knew of the situation and history. He was excellent in helping Dad place Mom in a memory care facility where they could ensure that she was safe, took her medications, and could monitor any potential changes in her condition. He also helped guide us through the process of guardianship for Mom since there had not been any power of attorneys established.
Toward the end of that first year I knew we had to do something to move them nearer to me. After visiting one particular place, the representative, who had worked as a social worker, shared with us some things we should do as soon as possible. We knew my parents had wills. However, there were no healthcare directives nor financial protections. She told us to find an eldercare lawyer to help advise us. We wasted no time. Although Dad didn’t completely understand the Medicaid 5 year or the VA 3 year look back into finances nor the urgency with which we moved, he allowed us to help him literally get his estate in order to not only protect Mom but also himself. Now, 2 years later, he is beginning to appreciate having done it…even if he still doesn’t understand all the intricacies.
Not long after that Dad began an 18 month battle with his own health issues (3 surgeries for 3 different issues) which has significantly affected his stamina. This is a man who had never had health issues or been in the hospital prior to the first surgery; he was 80 years old. Which has brought us to now. Thankfully, we have found a community nearer to us for my parents to live (Dad’s choice) and we are in the process of making that transition happen.
The hardest part of all of this was in determining when to have them move. Mom was already in a facility. Dad was trying to manage their large home and yard on his own. It was too much, especially with the addition of the health issues. As your parents and grandparents age you may be faced with these same questions. When do you broach the subject about downsizing? When should you become concerned enough to push for moving to a retirement or healthcare community?
One thing we have found as we have talked to people who have faced these decisions is that family members who either live with the declining loved one or see them regularly each week often are the ones who don’t notice the decline. They can excuse behavior changes away. They may not know what symptoms, actions, or issues to watch for or monitor. They may also be in denial themselves not wanting to admit there is a problem. Those born before 1945 tend to be very independent, stubborn, and excuse issues as being minor. They rarely advocate for themselves with healthcare personnel accepting their treatment with full faith in the professional. Sometimes they ignore issues simply because they do not know that minor issues or symptoms may in fact be something more serious. Older Baby Boomers may fall into the same pattern as the Silent generation although younger Baby Boomers are beginning to be proactive in their healthcare.
It is often the family members who do not see their loved ones regularly who notice the changes first. We have had people tell us of extended family or high school friends who have called to inform them that their parent has had several falls or that they had to help them find their way home because of confusion while running errands. Unfortunately, when they bring up the subject with the caregivers closest to the one exhibiting signs of trouble, they are often ignored at best or scorned at worst. Denial is the worst thing for your loved one. Early intervention could help prolong the life of your loved one and prevent harm to them or someone else.
So, what do you look for when trying to determine the next steps of care for your loved ones? Long term care communities usually ask that your loved one be assessed on their activities of daily living (ADLs); most communities require at least 2 areas in which your loved ones need assistance in order to be placed in an assisted living facility. These areas include bathing/dressing, feeding, toileting/continence, and transferring. A doctor or other medical personnel needs to fill out a form (the name may vary by state) for entrance into the facility. However, you may also review these areas yourself to help you judge when you need to step in and advocate for your loved one.
A secondary set of assessments, known as instrumental activities of daily living (IADLs), also needs to be considered in determining when to intervene in your loved one’s care. The IADLs are not as personal as the ADLs, however, they are important for managing their lives in an orderly and comfortable manner. The IADL areas include: housekeeping/maintenance, meal preparation and clean up, care of others (choosing providers, child or pet care, etc.), shopping and community mobility, financial management, healthcare management and advocacy, communication management (telephone, mail, and computer usage), and safety procedures and emergency responses.
While your loved one may not yet need assistance in the activities of daily living, they may show signs of needing assistance in the instrumental activities of daily living. Are they struggling to manage their checkbook? Are bills going unpaid? Is the house and yard being kept to the usual standards? Are they preparing nutritious meals? Are they turning off appliances such as the stove and unplugging a coffee pot? Do they have difficulty caring for their pets? If they help care for grandchildren, even for a short time by themselves, are they able to pick up infants or toddlers to transfer them safely or meet their needs? Can they keep up with running children in order to keep them safe? Are they able to manage an emergency situation by phoning for help? Can they keep their home and others safe on their own? Have they had a fall or multiple falls? Are they able to go grocery or clothes shopping? Do they become confused when traveling or driving outside their normal area? Have they become confused while driving in their regular surroundings? Do they communicate health issues to their doctor or do they simply excuse things away? Are they managing their medications such as picking up prescriptions and taking as prescribed?
The following resources and articles will aid you in understanding the assessment process.
IDL/ADL Checklist (pdf)
Understanding ADLs/IADLs will also help to alert you to issues that may be the beginning signs of dementia. Alzheimer’s is only one of 50 different types of dementia. Symptoms of dementia generally include impaired memory and communication as well as a decline in everyday living activities. Additional symptoms also include cognitive abilities, behavioral, mood and psychological changes, and muscle coordination. Some forms of dementia can be reversed because they may have been caused by malnutrition, vitamin deficiencies, other illnesses, and medication reactions. This is why it is imperative that as soon as symptoms become apparent the caregiver begin advocating with healthcare professionals on behalf of their loved one to have them evaluated and tested. Often the one suffering from the symptoms is unaware of any problems.
I hope that this series has proved helpful to you to begin a difficult yet needful discussion with loved ones. There is much information and many resources available. Often researching one area can lead to a new resource. The information provided here is not all encompassing. In fact, I have only scratched the surface. The series was intended to be a springboard from which to facilitate conversation within your family. Each family and individual situation will be different. Planning for the care of our loved ones is the kindest, most loving act we do. Don’t delay. Begin The Talk today.