“Those were the great old days you know? And we was like the Roman Empire.The Corleone family was like the Roman Empire.” – Frank Pentangeli, The Godfather part 2
If you are very lucky, as are we, your family is a loving, caring group. We are not Italian, or criminal or violently crazed pychos (well I am if you get on the wrong side of me). We are individuals tied either by blood or marriage. We are tied by strong emotions rooted in our history together, by our children and their children. We are not a large family so we tend to be quite close and know each other’s business. We are connected – not in the Cosa Nostra way, but we do have ‘Omertà’. An unwritten code that ties us together.
This weekend we are gathered for a celebration and a remembrance. Celebrating a landmark birthday for one of us, fond memories of different times for another. The occasion has made me think about what a special group we are. Some of us are far away and not able to be close to us geographically as we would like. They are still part of our group. Here in spirit.
Your family may be a group of people who are genetically or legally related or a “family” – those closest to you who can be closer than your actual relatives.
Our family dynamics are, like most other people’s, up and down. It is not a fantasy family where everyone gets along all the time of course. Sometimes one or other of us irritates the other. But like any animal pack, herd or group, we tend to close ranks and take care of our own when something goes awry. Our tribe is fiercely protective of any of the others within it.
When we were first told that my husband had a terminal illness, some of us were disbelieving because he seemed so ‘normal’. Some even questioned if he was ‘putting it on” for attention. This hurt me – a lot. But I had to remember that most of our group don’t have my nurse training or my understanding of the terrible disease. Thankfully he was never aware of it. As time went by and my husband became more obviously affected by his illness, we all closed ranks and protected him from every perceived threat.
Because that’s what families, tribes, packs do.
“The Godfather” was a favorite story. The appeal was in the power and strength of a family. Our family is important to all of us. Its strength lies in our ability to ‘cover’ for the weaker members. In the various stages of FTD, we would:
- Fill in the gaps of speech and expression
- Order food that we knew he would like
- Make decisions when he couldn’t. But always, always, deferring respectfully to what we knew he would choose if he could.
- In the later stages, those decisions were not pleasant for us to make, but we made them anyway because that was what he wanted. We had to sit by and respect what he had decided three years before.
- If things didn’t go his way, he would rail and rant and be very unpleasant. We would overlook this and:
- Use tactics to allay or even distract from difficult situations. Food, drink, noise, environment. All can help to change the situation so that ‘outsiders’ are not too upset.
Keeping dignity intact becomes a primary concern. No-one wants their loved one to be the subject of ridicule or derision.
Our family took it all in their stride. We understood that he was fighting desperately with his inner hitman. The hidden assailant that those of us on the outside could not see, feel or understand. But we helped him fight by keeping our family unit tight and loving him unconditionally. I know from fellow caregivers who do not have family support that it is a very lonely existence. Friends are valuable, but not quite the same as family. You may notice some friends disappear. Having a loving supportive family around me was riches indeed. I don’t think I would have made it without them. The FTD movie seems to stretch forever in front of you. But take heed, the last reel of the film will be here before you know it. Your family or “family” will help you to the last frame.