Blog #15

Recently a wife caring for her husband with dementia honestly asked, “How will I know when it is time to consider memory care for my husband?” 

I think such a question is brave and courageous. She may not have realized it when she asked the question, but in doing so, she subconsciously started to acknowledge the reality of dementia being a one-direction disease. While she is currently able to leave him at home for short times and it appears her husband is in the early stages, her brave question also accepted that there may be a change in the future and she may not easily recognize when she hits the next level of care. I admire her for asking. 

While the conversation could go several different directions, I want to focus on two: her health and his safety. One could also make the argument that we want a focus on her safety and his health. Fair enough. Let’s consider the health and safety of both the caregiver and the one being cared for. 

It may not be obvious to a first-time caregiver that the stress of caregiving can very quickly affect the health of a fully-functioning adult. While I never want to use fear to persuade anyone to take action, there is a worthy cause in being very realistic about the physical and emotional toll caregiving takes. I dare say I don’t have to quote statistics and research to convince anyone of this. I think we all know that feeling of being stressed out or exhausted, which is often followed by the realization that we are not the best version of ourselves or that we are behaving in ways that we would not typically behave. We also know when we're not getting our good sleep or enjoying life like we once did. We may start noticing that we don’t laugh as much as we used to. 

What else do I mean when I refer to the safety of the caregiver? Unfortunately I mean just that. In some cases, the behaviors of a person with dementia can become physically harmful or dangerous. Challenging behaviors is a blog for another day but for now we must admit that if caregivers are feeling weak, intimidated, scared, or not-strong-enough to physically handle caregiving, it may be time for a hard conversation about what is next. 

Change in health and safety for someone with dementia is demanding and difficult. Even something as simple as taking routine medications can become an act of heroism and creativity. Stepping into the role as personal care assistant becomes a challenge soon to become a full time job in between mealtimes, which is also its own part time job. 

So often we forget the simple luxury we take for granted in our youth and health, our safety. Unfortunately, dementia often robs us of our ability to think logically. One of the first warning signs is not remembering that 911 is the number to call in case of an emergency. 

I know of several examples of when a neurologist asked a patient “What would you do if there was a fire in your kitchen?” The patient could not recall the number 911, but would also not be able to express the concept or idea of getting out of the home as soon as possible. This is very concerning for the safety of both parties. 

Dementia also has an unkind way of making its victims think they belong somewhere other than their home, at all times of the 24-hour day and in all types of weather, including extreme heat and extreme cold. Again, not wanting to use fear as a motivator, it is important to realize that it is typically these safety concerns that lead to a crisis, that leads to a serious consideration, if not a move into a memory care community. 

We have all heard of beautiful stories of loved ones never having to leave the comfort of their homes as they age into their final stages of life. They went on hospice and, the way the story is told, “passed peacefully with friends and family around them.” Perhaps this dreamy story is true, but I also want to suggest that it leaves out all the messy parts like caregivers not showing up, having to tend to a loved one like you never thought you would, having to change one’s entire life to make this happen, etc. Perhaps it works out for some, but I want to be honest, it may not be as rose-colored as the story-tellers suggest. Hindsight forgets the gross, smelly, and challenging parts. 

Please follow along for part II of this conversation.