by Kathy Rogers
Some of the most difficult and heart wrenching decisions to make when facing the progression of young-onset dementia (YOD) in a loved one are if, when, and how to consider additional levels of care as an option. A diagnosis of YOD is immediately overwhelming, which is why so many of us put off the harder questions until the reality of what is to come sinks in. That is completely normal and honestly, to be expected. There is only so much you can grasp in the beginning.
To complicate things further, if your spouse is anything like mine, they are not necessarily in agreement with the diagnosis. Denial is a very understandable and relatively common first reaction to a YOD diagnosis. All this plays into our initial response of avoidance. But eventually, the question of what to do next will raise its ugly head and you will be faced with making some hard decisions. As someone who has walked the path of a YOD diagnosis and all that entails, I encourage you to start thinking, exploring, and researching options for levels of care sooner rather than later. Part of what we do in our YES! network is to share our experiences and lessons learned to help you make the best decisions you can make given the circumstances. You are not alone.
Some of the indicators to be watching for that will push you to the precipice of making a move to increasing the level of care, including placement are:
- You find medical procedures have become too involved
- You are feeling overwhelmed with anxiety, depression, anger or frustration
- You find your reactions are becoming irrational
- You are feeling isolated
- You have stopped doing things you enjoy
- You find you are not eating or sleeping properly
- You never have time to relax or time to yourself
- You want to reestablish yourself as spouse/child/partner
It is likely that you, like most families, look at what would be your breaking point. What would it take to force you to make a plan? Incontinence is often a hurdle no one feels ready to face. The inability of the affected partner to be left alone is an issue for working spouses (which many of us are). Lack of appropriate activities and stimulation also plays a role. But above and beyond all of these – and they are all perfectly acceptable reasons to consider long-term care – is safety. The safety of your loved one, your own safety and the safety of other family members, even pets, trumps all other reasons to consider an additional level of care.
Dementia is immensely unpredictable! Many of our loved ones’ declines are not straight lines, rarely even curvy ones. It is like falling off a cliff. What will I wake up to tomorrow? What more can my spouse lose? Will they recognize me, be able to dress themselves, get lost… the list goes on. This is the reason safety has become such a huge issue. We can’t accurately answer these questions from one day to the next let alone from one month to another. Therefore, planning becomes more important and more stressful the longer you wait. The last thing you want to handle when life hits a crisis breaking point is the question of how to handle the additional level of care needs, especially if that includes placement outside the home.
As hard as it is, this decision, or at least the exploration of options, needs to happen sooner rather than later. Because of the unpredictability and degenerative nature of this disease, doing your research and visiting placement options becomes less and less feasible as time passes. If you have visited long-term or memory care facilities, spoken with in-home care options, and discussed receiving help from family and friends, then when the crisis happens, and it will, you will have a game plan from which to make your play. There is no way to know exactly how this disease will manifest itself in the later stages. Knowing your options, having a plan, and being open to long term care makes life more bearable at the present time. Once these issues have been tackled, push these decisions to the back of your mind and find whatever enjoyment you can in each and every day. And most importantly of all, stay safe.
