By Ellen Lenox Smith, Co-director, Medical Cannabis Advocacy

Remember when you were young and never thought about life not lasting forever? The future was awaiting you to choose your path but the thought that life was at some time near the end, just wasn’t in your vocabulary. But as we age, those emotions start to creep in and you try to justify they are still in the distance.  But then life happens and you are confronted with the reality that you are now the oldest in the family – and your time is coming closer to closing.  

It’s not a fun process for anyone to tackle but at some point, we have to look at our lives and decide where we want to be settled; that will include safety and comfort. Should you continue to live in the location you have enjoyed for years, move to independent living, a smaller home, or even consider moving in with another for support?  Then, for most of us that have to add chronic medical issues, difficult choices as to how to handle this stage of life become more complicated. 

With both my husband and I coping now with incurable progressive conditions, we have had to face reality and look and act on what might be the best solution. Since I live with Ehlers-Danlos Syndrome which has meant twenty-six surgeries to be able to move forward and has included four years in a wheelchair, the reality is that l will not be able to safely help my husband that has now been diagnosed with Parkinson’s, as his condition eventually progresses.

So, the process of preparing begins with the main focus for us to not become a burden on our four sons. I watched my sister become so burned out caring for my two parents in their last years and I just don’t want those to be the lingering memories that were created for her, to happen to our sons, too.

So here are some of the tasks we are taking on to prepare for this stage of progression of life:

  • We are beginning by preparing the house for safety. We started by converting the bathtub into a walk-in shower since so many in the aging process fall due to lifting into the tub.
  • We hired a lawyer to make sure all is in order including our wills, Health Care Powers of Attorney Living Wills, and Financial Powers.
  • We have hired a woman to come to the house to begin to help us with the cleaning which is becoming tough since it includes lifting the arms up and applying pressure at times. These movements can be so damaging to my condition.
  • We are calling the VA since my husband is a veteran to see what services and coverage will be available both while still in the home and eventually to apply towards assisted living.
  • We will continue to be careful to keep ourselves as safe as possible by exercising, eating safe foods, and getting proper rest. 
  • We find that extra stress is so difficult to take on with aging so we are trying to stay up on the news while not watching and listening too long. We read the morning papers and watch the evening news briefly and have cut out any more than that.
  • We have made a pledge to try to avoid confrontations that are not necessary and walk away from moments that create more stress.
  • We are presently touring a number of assisted living facilities to find a few we can put on a list to put on the back burner. We want to find ones that we can see ourselves living in if this is needed in the future. Trust me, taking this time is so worth it since there is a huge difference in prices, sizes of rooms, what is included, the atmosphere, etc. We want to find two to three we could learn to adjust to living at so when the time becomes necessary, we will have a chance of finding an opening. In fact, a few are more than willing to put us on their list for what we are looking for, and when it becomes available, they will call us and if we are still not ready to transition then, they will just put us back on the list.
  • We are making sure we locate places that will allow us to continue to have our small rescue dog and my service dog when I get rematched.
  • We are thinking ahead of how we will attend doctor and PT appointments when we get to the point of not being able to drive. Some facilities include transportation so be sure to ask about this!
  • We are making sure we find a facility that will allow me to cook when I am still able. I may not be able to eat their food safely for EDS means many food sensitivities to take on and cheating on food just means more pain and subluxations.
  • We have switched from our PCP’s we both adored to Brown Geriatrics so we will be cared for by those specializing in this age range and educated on the latest procedures, medication, and even trials.
  • We are preparing how to possibly handle Hospice in case that becomes necessary for me. I am not able to use opioids so there needs to be a plan on how they would take me on.  EDS’ers are not always able to use the certain medications used in their program such as morphine.
  • We are focusing on how to continue to have passion and hope in life despite our incurable conditions and the aging stage we are now experiencing. We find keeping the body, mind, and spirit active is very positive in helping us cope.
  • We, as all hitting this stage of life, are even talking about the horror of knowing that one of us will be left behind when one of us loses our life first. My husband has been taught to do PT on me each AM to put the shoulders back into position, reposition the hip that subluxes frequently along with correcting up-slips. So there is actually a feeling of panic when I picture if I am the one left behind. The thought of no longer getting this daily help that allows quality of life for each day is truly frightening to imagine.
  • We are both now involved with support groups to help us be able to ask for suggestions and feel the support for not being alone.

There is a lot to think about and prepare for as we approach this stage of life. It’s not fun to take this scenario on and especially after some negative experiences with some of our visits to assisted living facilities. We have had to struggle to put our emotions back into a better place. But, we are determined to make as many choices for ourselves now while we are still sound of mind. We are glad we are going through this preparation but will meanwhile attempt to live life to the end with the most dignity possible.

May life be kind to you,

Ellen Lenox Smith

Co-Director for Cannabis Advocacy for the US Pain Foundation