This post is about my father who was diagnosed with a rare neurodegenerative disease in his late 40's and his transition into long term care when he was 55. I was 22. There is quite a backstory that I won't get in to but we went through common stages of In Home Care --> Assisted Living --> Nursing home and then he passed away in 2009 at 62. My hope is that my story and lessons learned will inspire a reader to prepare ahead of time and perhaps make the transition easier for them in doing so. This story isn't entirely unique and many people have had this experience in their lives and so perhaps this story will also inspire them to have a conversation with their loved ones and share it. Much can be learned and prepared for but having conversations ahead of time can make a real positive difference.
Why does this transition have to happen?
There are a host of specific reasons someone might have to move into long term care but here are some general ones:
- You and/or your support network are no longer capable in some way of caring for them
- Their health needs require specialized care by qualified health professionals.
- They require long term care that may not change (6 months or more).
Why is this transition so hard?
In lieu of laying out all the details of my experience and then extracting generalities, I think the theory of Self-Determination is one lens through which one could view the struggles associated with this transition. I am not a mental health professional and do not play one on the internet but having first hand experience of this transition as well as being naturally curious, I've come to connect some dots here that may help understand why it can be so traumatic. It might even be obvious after I describe it. Self-Determination Theory suggests that humans are motivated by the needs for Autonomy (involves self-initiation and self regulation of one's own behavior), Competence (ability to interact proficiently or effectively with the environment), and Relatedness (feelings of closeness and belonging in a social group). When someone transitions into a long term care facility, a whole host of things effect autonomy, competence, and relatedness. For starters, a primary reason for this transition is one or both of physical or mental ailments, so autonomy is dramatically effected. It's nearly lost completely really. A new resident to a long term care situation has now found themselves in a foreign environment that is DRAMATICALLY smaller or more constrained than their previous living situation was and so they are left with little experienced competence on how to function in this new environment. Socially, from a relatedness perspective, they are removed from their previous social sphere for the most part and now have care takers as well as the co-residents who are more than likely strangers . They more than likely won't feel close nor that they really belong there. As a loved one witnessing this transition of someone into a long term care facility, all sorts of similar reactions of feelings can happen. Some are empathy or sympathy related but there are pretty traumatic effects to their own Autonomy, Competence, and Relatedness as well. If the theory is reasonably accurate in its thesis and framework (and it seems to make sense to me!) then much of what can be done ahead of time can relate to reducing the potential negative impacts on these fundamental needs. More plainly, you and your loved ones are going through trauma on a scale probably never experienced!
Like I said before, there are a huge number of lessons to be learned from going through this experience and I didn't have all of them in my own experience. I welcome anyone commenting and sharing more and getting more of a conversation going here!
Before we start there are a couple of realities to consider:
- Long term care facilities are space constrained. There may only be a bed, side table, and walls that can be called "yours". Better case is a private room.
- Personal items are lost, misplaced, damaged, or stolen (yes, stolen) often in these facilities. If it can't be replaced or you don't want to lose it, don't take it or find a proxy.
- These facilities, like many hospitals, are notoriously understaffed and the care takers are overworked. Help them out and partner for improved quality of life for everyone.
- Only take things that are easy to operate, that the new resident can take care of on their own.
- The accommodations may have much to be improved on (lighting, cleanliness, food, etc.)
- There is a mountain of paperwork and documentation associated with this transition and even throughout the care.
Lesson 1: Document your loved ones and your wishes ahead of time. This isn't just the regular Estate Planning. I'm talking about simpler things like what kinds of things from home would they like: favorite linens, blankets, pillows, art, decorations, etc.
Lesson 2: Prepare legally and financially ahead of time. Powers of Attorney and Medical Powers of Attorney are a must here, so seek legal help and sign these documents while everyone is healthy and able. A sudden transition into long term care can be devastating on a families finances so get professional financial and accounting help to structure your finances ahead of time and understand how things need to change near a transition and after.
Lesson 3: Decisions will be hard and will continue to be so. The decision to transition someone into long term care can be hard in and of itself and sometimes has to be made FOR the loved one. Talk about it ahead of time, maybe write a short speech to yourself about what you'd like someone to say to you if you could no longer make the decision on your own. Base this in core values and personality traits as well as how you care about your loved ones. These avenues may be the best case you have to communicating what needs to happen. Also, the hard decisions don't stop. There are plenty of ongoing needs that will come up if you have primary responsibility so make it easy on yourself by making systems, decision processes and/or criteria, or cultivating a trusted advisor to help you. These can help improve the speed of decisions as well as the emotional/mental toll they could take. Make space for these decisions and perhaps even schedule optimal times (when at all possible) and batch them together to move through more quickly and efficiently. It may seem mechanical but this could help with the challenges associated with these tough and ongoing decisions.
.Lesson 4: Cultivate self-care skills throughout life. This is for you, whether you're the one that has to transition or you have to help a loved one make the transition. There are many resources out there, Zen Hospice Project being one, that have courses in mindful caregiving and self-care development. These skillsets are CRITICAL for caregivers to get so they stay healthy and can be the best care takers they can be but they're also extremely beneficial on a personal level. I knew some meditation techniques before my dad's experience but I also took about amateur boxing in my garage as another outlet. Find yours, find balance, get the wisdom of the ages in on it, and do it early!
Lesson 5: Most critical lesson of all: express love and gratitude often. This is just plain and simple good human character but in some ways it was lost in my experience to continuously share these feelings and express them to my dad, mom, brother, pretty much everyone I did care for. You can feel like you're drowning in sadness and hardship and so there is no obvious space for other emotions. Even the smallest expressions can mean a great deal to your loved one in the transition or other loved ones involved, but if practiced on a regular basis, can become a dominant way of being before, during, and after this transition. Do this in life in general but its really REALLY important under these circumstances. I didn't enough and while I have no true regrets in life, this is top of my list for "what would I do differently?".
This kind of life transition is unfortunately all too familiar in our world in the U.S.. What's common here to many life and business transitions is the criticality of planning, having meaningful conversations, getting informed and educated, and documenting all of these things ahead of time. Think of the preparation as a scenario plan that you hope never has to come to be used. Even the resulting "Long Term Care Plan" is half a page long, that's more than most people I think prepare, I know we didn't and lived it daily. The need for a strong support network will be key as well. We had our family, my brother, my mom, myself, and my dad's brother, who all were closely supporting his needs before, during, and after his transition. We each had our own support networks as well as spouses, close friends, and trusted advisors. There are lessons here that I apply to my work at Next Callings, both to my client life and business transitions. I hope it's benefited you.
Dedicated to my father: Bill Prestin