The ever-changing landscape of what FTD looks like today in your house. It is temporary. It changes day-to-day, sometimes minute-to-minute.
The impending New Year brings uncertainty, other than that phases will come and go. Each one is completely different to the last. Sometimes, behaviors from one phase carry over to the next, sometimes disappear completely.
The ebb and flow of FTD is like the ocean. The tide brings in all kinds of flotsam and jetsam.
Then takes some of it away again. Permanently.
To be prepared for such drastic change, you need to protect yourself and family from the feelings of helplessness and frustration.
1. Accept. Accept that the changes are inevitable. Accept that they may be here today, gone tomorrow. Accept that there is nothing you can do to alter the course of the disease, only your attitude towards it. Acceptance of “It is what it is” will really help you to handle inappropriate and strange behaviors.
2. Don’t argue. Arguing with a person with absolutely no logic or reasoning is fruitless and frustrating. Going back to (1) above, you have to accept that your loved one has no insight or sense of reason anymore. Sometimes however, I have to admit that arguing feels good, even though you know it’s useless. It helps get out your frustration. Your loved one will look at you as if you have two heads because to them, you are the unreasonable one.
3. Be kind to yourself. When it’s all over, no-one ever says “I wish I’d waited longer to get help”. Or “I wish I had not taken a respite break when I had the chance”. If it is at all possible for you to get away for a few days, do it. Or even just a pedicure, dinner out with friends or day at the beach. You can’t go back and redo it. In my experience, being afraid to do something of which you think your loved one would not approve or want you to do (leave them for a day) is purely one-sided. a) They won’t even know what it is that you’re doing and b) you don’t actually have to tell them. See item 4) below.
4. Therapeutic fibbing. This tactic may be the single most valuable tool in your arsenal throughout the course of FTD. You have to remember that your loved one, after a certain point, has no concept of time, place (other than your familiar home maybe) or situation. Sometime, they will just be argumentative because that is the phase of the disease they are in. I once asked a member of my support group why she was so concerned about telling her husband that she was going away for the weekend with a friend. She replied that he would not like it. I asked her “What will he do?”. She replied that he would be grumpy and disapproving”. I said “So what?”. She was leaving him with a carer with whom he was very familiar. So she knew he would be safe and well-cared for. She told him she was going to see a sick friend, went on the trip and he was just fine. The carer said that he never even asked about her. When she returned he just said “Hi” and carried on with what he was doing. Like she had never left.
5. The voice of reason. You will probably give your loved one way too much credit for understanding what is going on. Because that is how it has always been. Each being deferential and respectful of the other’s needs. Other than keeping them safe, comfortable and loved, there is little else you can do. You cannot defer or appeal to their prior intellectual status. Not that you should treat them like an idiot of course, but don’t give them credit for making good choices or decisions. They can’t. Not anymore. You are now in the parental role of making all their decisions for them. That’s not to say you should dismiss what they say (or try to) but merely agree and then do whatever you were going to do anyway. Agreeing is one of the tools.
This year will certainly bring new behaviors.
New choices. New fears. New decisions.
For some of you, it will bring new status. Perhaps this is your loved one’s last year. Perhaps 2014 will bring the last stage.
I’m not trying to be morbid or scary. Just realistic.
You will know if it’s the last year. You will know what you need to do.
You won’t need a list of tips.
You will need all the love you can muster. But you will know that you have done everything you can do to ease the passage to the next phase.
Whatever that is.
I wish you inner peace, love and serenity for 2014.
- Holiday from FTD? Not Bloody Likely! Top Ten Tips for Handling the Holidays (deborahthelwell.wordpress.com)
- FTD – Planning for Hope: Living with Frontotemporal Disease (deborahthelwell.wordpress.com)
- “It’s stupid, but…” (whisperedthings.wordpress.com)
- Home for the Holidays (atapestryoflove.com)