Note: This post is a part of a series detailing my family's fight with dementia and elder abuse.
Your loved one is finally safe. Whether they are with you at home, or they’re in a skilled memory care facility built to handle their needs, you have handled the most traumatic portions of their care, and you have a roadmap to ensure they are cared for until you have to say goodbye forever. Along the way, it is incredibly likely that you have neglected your own needs while seeing to those of your partner, parent, or trusting friend. This is an account of the curve balls dementia threw at us, and what I did to ensure dementia didn’t rob me of the pride and confidence I should have after handling such heartbreaking circumstances. And it’s a log of all the ways I get to say goodbye one last time.
I’ll start with self-doubt because it hits the hardest and earliest. There was suspicion that something wasn’t right almost with my grandfather five years before he entered memory care. The doubt started with me questioning who my grandfather was after my grandmother died. When he let transients destroy his house and fought their eviction, was it him under all the erratic behavior, or was he actually sick? This cut me, as a caregiver, to my core. How could I have been a good grandson when I let this happen? Was I too busy with my own life to see the signs? But the objective truth was that my brother and I did what we could as soon as we could, and our efforts were neither insufficient nor did they overstep boundaries.
When I look back, the diagnosis and financial control that finally got him the totality of services he needed was not some decisive lightning stroke but instead a culmination of almost twenty years of care and guidance. It started when Trust papers were drawn up by my grandfather before I’d even gone to college. It continued through evictions and wellness checks that didn’t go our way, and it is still running as my brother and I navigate his life in memory care amid his declining health and our own personal challenges.
I fought doubt by remembering that just being there for him was more than most people could handle. The anxious calls from neighbors and extended family were helpful, but we were the ones that had to file eviction paperwork and wait for the constable to arrive. We had to deal with lawyers and detectives, doctors and nurses, to make sure all his needs were taken care of. And he would not be where he is today without our help. The reward from this exercise was a quiet affirmation in your own memory of how you helped when they needed it most. Something that would outlast their forgetfulness.
The second challenge is exhaustion. You can only do so much for your loved-one. It is OK to pause your attention for a moment, an afternoon, a weekend, to ensure you are not overwhelmed. Dementia has no cure. It is a progressive disease. Abusers may attempt to weaponize your absence, dementia may drive your loved one to fall apart as soon as you step away, and every call from the staff at the home will put your heart back into your throat. The fight is long, and your loved one will not fare better if you end up at the end of your rope. Take some time for sleep, food, and general decompression after dealing with dementia issues for an extended period of time. Reading about dementia can be helpful, but put down the research and pick up a fun fiction book once in a while. Write poetry, sing in the car, or find affirmations to recite when you get down. We’re in a journal and set milestones on your path to help you measure how much you have contributed to improving their quality of life. Taking stock in a quiet time, even if you have to use ear plugs to make it, will keep you supplied with enough spoons for the bigger challenges.
While I don’t have experience living with a loved one with dementia in my own home, memory care has presented its own unique set of challenges to my self-image as a caregiver. Separation made me feel neglectful for placing them in 24hr care. Worse, Covid hit less than a year after entering care, and they were in quarantine for much longer than anyone thought. I felt like I had to say goodbye without the assurance that I would ever see him again. This idea that only inattentive people send relatives to care homes could not have been further from the truth. Getting them into care cause an immediate jump in their stability. Better still, it was a huge weight off the shoulders of our family. My grandfather was admitted to memory care over the Thanksgiving holiday, and he was acclimated and forgetting his abusers by Christmas. Animosity towards family members took longer to ebb, but the staff played a huge role in redirecting his attention.
In general, rely on the staff and their assessment of the needs of your loved one. You might visit or call periodically, but they’re there every day, all day. And there are plenty of opportunities to see to the needs of your charge. Each facility is different, but you may need to arrange hair cuts, outside doctor visits, and prescription refills. You may be able to pick up your loved one for lunch. Trust the judgement of the staff, and take the time they give you to regain the energy you need to work for yourself. Despite the tragic accounts you hear on the news of abusive caregivers, most care facilities are not bad places. Trust the research you did before admission. Trust the doctors and nurses on staff, and trust your own instincts when talking or visiting. While your care and attentiveness are just as vital now as before, being on guard every moment is not helpful. Relying on other providers to be there in the case of a fall, a bout of dementia-caused depression or confusion, or an afternoon meal means you get to choose to help without becoming resentful.
I have a family and career that means I cannot devote all my time to handling the needs of my grandfather. Even if I did have the time, it is not healthy to spend it all in their service. If you are not able to find or afford a care home, be sure to spread out your obligations to your loved one through adult day care, other family members, or even their old friends and family of similar age. It takes a village to handle the needs of your loved one. Don’t close yourself off to help out of stigma or a sense of martyrdom.
The cynic in me wants to be melancholic about how we treat people with dementia. At worst, I am confronted with a feeling that we are warehousing our loved ones. At prohibitive cost, we may be draining generational wealth to, at-best, ensure a minimal quality of life or stave off a progressive disease in a single person. The broader existential questions raised by dementia healthcare and similar chronic and debilitating conditions should never overshadow the real care you provide for your loved one day after day. You are moving mountains. You are providing loving care. And they can feel your love even if they can no longer express it in words.
Having a loved one with dementia means that you get to say the longest goodbye. They may have lost the ability to express their feelings in the same way, but they can feel your calm and care every time you visit with them for just a bit longer.
This is not a comprehensive log of all struggles you may face by any means. But I hope these personal accounts can help you overcome what dementia throws at you. And I hope it can give you the strength to withstand those challenges to see a better day when we know more and can do more to help the ones we love.
