1. People. As in any fight, it takes a team. It’s hard work. Not only being a caregiver, but getting used to all the new things that your loved one will be doing, saying and acting out. You need a team of great people who love you and them for what you are. Warts and all. Not some fair-weather friend who flakes on you at the last minute. You and your FTD’er need a reliable group of people who will absorb you and do whatever it takes to make life run as smoothly as possible. Friends, sitters, doctors, nurses, social workers, attorneys, family, support groups. The more people you can get in your corner the better. Because there will be many, many rough days.
2. Patience. Even if you don’t have to deal with anger, aggression, violence or verbal abuse, you may (probably) have wandering, getting lost, incontinence, pure stubbornness, inappropriate social behaviors and garbled speech or total silence to deal with. Or a combination of any or all of the above. You may not usually be the most patient person in the world. (I’m definitely not). It may take an act of supreme strength to hone the skill until you can be entirely selfless and do what needs to be done. And then you can’t feel like a martyr.
3. Flexibility. To handle everything that is happening to you both. Go with the flow. Accept the inevitable. We’ve talked about this before. Pick your battles. Don’t waste your energy fighting “IT”. You can’t fight FTD per se. No matter how much you believe in mind over matter. It doesn’t matter to FTD what you have in mind. Being flexible will help you deal with everyday changes. Your routine may only last a few days before you have to change it again. Or it may last months. Who knows. You just have to be able to change your plans without notice.
4. Humor. A highly developed sense of one too. You will see the honor in the most horrible situations. Macabre almost. Sick even. Sometimes things are so ridiculously outrageous you just have to laugh. At yourself. At the things FTD makes your loved one do. At the reactions you get from people who are so wrapped up in their own “Glee-like” dramas. Humor in unpleasant things. Humor in things you’ve never even considered before. Ignoring that your house needs cleaning when it looks like a tornado went through. Even your kids didn’t make this much mess. And being ok with that. Or conversely, having to tell your loved one “I live here too you know!” when they are obsessively cleaning and tidying behind you everywhere. Humor in going to buy a bicycle pump even when you know he isn’t going to ride the bike anymore. But doing it anyway.
5. Love. Always love. Love the harsh words and sounds. Love the seemingly unloving behavior. Love what is left of them. Love yourself. Love the treasured memories.
Love every minute until there are no minutes left. Ding! Ding! Go to your corner please.
Never let your guard down. Ok I suppose that’s six strategies. But I mean it. Just because you have known and loved someone for forty years, does not mean they will not turn on you. It’s not ‘them’ anymore remember?
Put up your dukes and fight the good fight. Not physically. Metaphorically. Heroically. Fight for them. Fight for you. Give it your best shot. It will make you feel better. And get your team onboard too.
FTD is a fearsome contender. Advocacy is a fantastic defense.
But don’t make yourself your own worst enemy. Go with the flow. Relax.
Love! Love! Love! It will be over sooner than you would like.
That’s the old one-two. The sucker punch.
You want it to be over. Ding! Ding!
But wait, you don’t want it to be over.
Over is painful in a different way.
- Eight things you can do when your spouse has FTD (deborahthelwell.wordpress.com)
- Walters Times Three – a Match for FTD! Seven Pointers for Getting Your Way by Bending the Truth (deborahthelwell.wordpress.com)
- Watertown aims to become first dementia-friendly community (host.madison.com)
- Medical Advocacy and Support and Dementias and Alzheimer’s Disease (goinggentleintothatgoodnight.com)
- I’ve been looking forward to this day! (lwveney.wordpress.com)
- Family and Health: Caring about the carers (examiner.co.uk)
- November is Family Caregivers Month and a time to reexamine the role of the caregiver (savvyconsumer.wordpress.com)