For years now, I've been traveling the dementia/Alzheimer's journey with loved ones. The journey began when a loved one stopped his car in the middle of the street for no reason and another loved one made cookies without the needed ingredients. Both events were early signs that life was changing for these loved ones. As dementia and Alzheimer's took hold, my loved ones slowly lost their abilities to make decisions, care for themselves, and communicate safely and adequately. I worked with a substantial team of relatives, friends, and caregivers throughout the years to serve my loved ones well. There were definitely some highlights and true challenges along this journey.
High points
The best of the journey was the chance to spend intimate, special times with my loved ones. Together we explored the local environment, enjoyed special meals at home and elsewhere, and talked about good times past and future. We also played games, planned celebrations, watched wonderful movies, attended shows, and completed tasks. Being together and engaged in meaningful tasks were high points of this journey.
Low points
I won't lie, this journey has included many, many low points. The worst of the situation for me is the guilt I feel about not being able to help my loved ones 24-7. Sure, I could devote every moment of my life to them to care for their personal needs and entertain them. If I do that, I will lose the other parts of my life--my family, my health, my interests, and my well being. Few to none of us can devote morning, noon, and night to full-time care of others. If we try to do that, we become unhealthy, disgruntled, and mostly worthless to self and others beyond the loved ones with dementia and Alzheimer's. So what most people do, like me, is try to find a good balance of care for your loved ones with Alzheimer's and dementia, a balance that includes care for yourself, your interests/needs, and others in your life too.
Striking the balance is most difficult at transition points. At first, I devoted a few days a week and a few weekends a month to my loved one's care. Since I was caring for my loved ones with others, my work and their work provided a good balance and schedule of care. As time went on and my loved ones' needs grew, the team had to recreate the schedule and add to the care team in order to keep a good balance of safe, loving care. Those transition points were difficult because they required a lot of coordination and decision making amongst a team that held a variety of view points regarding what spells good living for people with Alzheimer's and dementia.
I am currently finding the latest transition the most difficult because at this point, my loved one cannot live alone and requires substantial personal care support at all hours of the day and night. My loved one would love to live with me or another team member--he would love us to be his personal assistant who cares for his every need. He expresses that desire via words and actions whenever I visit. Yet, after spending 24-7 with him for several days, I realize that I cannot physically provide that care since I can't live without sleep and I don't want to miss out on the relationships and life events occurring with my husband, children, grandchild, friends, and others. Like most people, I want to care for my loved one with dementia while also living a good life too--I want the balance.
Finding the balance
So today, I'm thinking about the balance beginning with my loved one's needs. He needs 24-7 care that includes personal care and engagement. There are a number of ways to provide that. The team could have made a weekly schedule of care that included a commitment by all team members to provide 24-7 care for a few days each week. We could also have hired help for 24-7 care in the home. Further, there are homes that provide that 24-7 care. These are all options that exist.
Coordinated schedule of care
A coordinated schedule of care requires a team with substantial time and a strong cohesive agreement about what that care includes by way of the care location, care activities, and care costs. This approach was impossible for our team mostly due to people's work schedule and commitments--few had 24-7 time each week to provide this care.
Hired help
Hired 24-7 help in the home requires substantial funds and oversight. Not only are you paying for the help, but you are paying for the upkeep of the home too. And, if the family does not live nearby, oversight is very difficult.
Facilities
To find a good facility requires substantial research. In my opinion, it's best to look for a facility early in the disease rather than wait until it's a last minute decision. Facilities are very expensive, and not surprisingly, the care will not be like the care a loved one can provide for another loved one. Care in facilities right now in the USA is typically associated with low pay as well as the tough political decisions related to our current leadership team in the White House. Most facility caregivers are immigrants, and immigrants right now, are facing harsh conditions in the United States. Low pay and harsh conditions do not support the best possible care especially when the care tasks are tough tasks. The caregivers in facilities will likely not be as invested as a family member might be so oversight is still critical to ensure good care.
Next steps
Our team did choose a facility close to one team member--a team member who has the ability to drop in when needed or desired. I helped find the facility, but didn't do the research I wish I had done to find the best possible fit--the current fit is okay, and not perfect. The biggest missing piece is that the others in the facility don't have much in common with my loved one. In hindsight, I believe another nearby facility may have been a better fit.
Also, I didn't anticipate how much dementia and Alzheimer's affects visits. When loved ones lose track of time and have no memory, they don't remember who visited, how long they've been there, or what's realistic in terms of expectations. What they do know is their current needs and desires without much concern of anything else.
So as I move ahead, I'm going to work with the caring staff at the facility to provide a more meaningful experience for my loved one, and I'm going to look for ways to help create that too.
Life journeys are imperfect, and dementia/Alzheimer's journey is no different. The best we can do is to stay informed and use our knowledge to support our loved ones' journey with as much good care as we can reasonably provide. Onward.
