We know what is happening, but just can’t bring ourselves to say it out loud. We know it is a ‘Stroke’. How bad is it? Will they be O.K.? There is nothing we can do, but wait.
This is very probably the most frustrating, mind boggling, heart wrenching time for us. We know what has happened; we know the good side and the bad side. However, no one is coming to talk to us about what has happened. Do we call family? And what do we tell them, we don’t know anything yet. Here comes someone, no they just went to talk to the other people sitting over there.
We have been here for what seems like hours and still no news. This is so hard. Don’t they realize how difficult it is to just sit here? Why can’t we be together? Oh no, did they die and we are waiting for a chaplain. Maybe they are dying and the doctors and nursing don’t know we want to be together.
Here comes the doctor. He is sitting down and tells me there will be no news for 24 to 48 hours. Life sustaining drug therapy was introduced in time, but it is no guarantee. He suggests we go home and get some rest as our best friend in the whole world is medically induced to sleep for a while. Can we see him first? Yes, but only for a few minutes, they don’t want him disturbed.
This is how most people experience stroke, within their family. Fear, no one to help or talk to, not knowing what to do first, and being afraid of what the news will be even when it comes; all these emotions and more go through a person’s mind and heart. Calling other relatives is an admission of the fear and possibly more. Guilt and the unknown are tremendous barriers to cross. And for a spouse it is the worst, because their life is all bound up in the outcome.
Yes there are new drugs on the market which will help reverse the effect of the stroke event. They must be given within a very specific time line. However, even with these, stroke is a life changing event for the whole family. With the drugs people sometimes sustain life altering changes in lifestyle and at best will need to be monitored for another stroke for the rest of their life. They will live with the uncertainty of when if ever the next one will occur. Without the drugs people will sustain paralysis and possible coma only to die without returning to the life they had lead, without saying goodbye or ‘I love you’ one last time. Without the drug they live out their lives in a shell unable to perform even the most basic of self-care.
For families this can stretch the fabric of lives beyond natural boundaries, although a stroke has stricken one person, the whole family is changed for the rest of their lives. The natural order of things is changed for all time and we must now regroup and find a way to move forward. For spouses or significant others this event brings us to the awareness that we will not be together forever as has been our plan from the time we first decided to form our lives around each other. The adult children of this union now must be the catalyst for moving the family forward. The adult child must begin to formulate the questions and in some cases the answers to propel this family unit forward. While at the same time they have now taken on the role of mom or dad. They must work together to make this entire situation the best that it can be for mom and dad, without taking over their lives. For the grandchildren this is very possibly the first brush with death. They are, both, frightened and in awe of the situation. These are sides to family members they have never seen before. Wow. Families brought together by divorce and remarriage this can be an extremely stressful time, especially if this is a recent marriage. The only thing we can use to guide us through this new world is that Mom or Dad had found some peace and happiness, thus wanting us to carry through their wishes. Put the hurt feelings aside and remember this is about a parent in a life threatening situation. The anger and sorrow of a divorce simply has no place at this table. Later there will be time to air all issues.
The next few days will go by in lightning speed. Now we are faced with decisions, some we had thought of and others we had not. Many families have done some planning over the years to help move this along. There have been discussions about medical procedures they want and some they don’t want. There is knowledge of insurance that can help pay for Skilled Nursing Home care or In Home Services. Some families will look at this event and faced it head on, to the point of delegating who will take care of finances; who is to help make care decisions; who is to be called, and one or two members are to be told of where all the legal documents are kept.
However, as we settle into our respective roles we must ask ‘what happens when we leave’? This is a family meeting that should happen after our parent is either in a nursing home or at home with help. And it should happen at least a week after the event, just giving everyone a chance to clear their heads and hearts for the hard work that is next to come. The only wrong decisions are the ones at the fringes of the linear planning line. Taking away all decision from the individual who has had a stroke is like pulling the rug out from under them again. Guiding them to their best choices (for them, not us) is where we should be and certainly deciding that the spouse has little or no say is asking for problems. Everyone needs to be respectful and bring what they see as answers to the decision table and all decisions need to be considered. We must not leave out the spouse but include them even if they don’t want to be there. Even if all they do is to sit and possible listen, this is a good first step for someone who has just been devastated by what they see as the loss of their best friend and possibly their own life.
Today is the beginning of a new role for everyone in this family and we will all need to be respectful and ready to do our part. When it is harder for one family member to move forward, others will need to help this person, but do not take their role from them, just help past the bump in the road. This will make a stronger and happier family although at this time that is difficult to fathom.