Priorities and Perspective
Your perspective on life is generally formed by the nature and nurture process.
Your outlook changes throughout the various stages of the life cycle.
As in all things FTD, your priorities change from day-to-day, week-to-week, month-to month. Sometimes from minute to minute.
Once a diagnosis (such as there is) evolves, there are certain things that hindsight now tells me that need to be done. Some quickly, some over the early weeks/months. But they need to be done. I have previously written here about the paperwork that you will need as your loved one’s illness progresses. (https://deborahthelwell.wordpress.com/2014/01/22/decisions-frontotemporal-decisions/
That’s all well and good if you know this right at the beginning of the symptoms or diagnosis. Of course, everyone should have a group of Advance Directives. But the reality is that very few do. The one thing I would emphasise here is that somewhere down the road of FTD, you will need some kind of paperwork that let’s you do what you need to do. So, that’s a priority. But here are some other things that you will need to prioritize. They’re not in any particular order. The order will shift as time goes by. One week it will be Advance Directives, the next, how do you explain to your family what’s going on. Choosing a place when you are faced with a decision to have your FTD’er live somewhere else. So, here are some things to think about:
- Legal representation and paperwork. If you don’t have power of attorney of your loved one’s healthcare, mental healthcare and financial (durable) interests, you may have to apply for guardianship. Not a pleasant process. At the moment, “Elder Law” attorneys seem to be the most well-versed on Federal and State Laws around your rights as the spouse/child/partner of a person with any kind of mental incapacity. That’s because they have been dealing with Alzheimer’s patients’ children and family for many years now. They can tell you how you stand as far as assets, liabilities, legal rights, Disability and State healthcare/VA assistance. But shop around. One lawyer told me that I would have to divorce my husband so as not to have my income/assets counted when I applied for State Long Term Care Benefits. This was not true.
- Discuss the long-term effects and outcome of the disease with anyone you love and who loves you and your partner. This will be vital later as you will need all the help and support you can get.
- Tell your employer. Be honest. tell them it’s a terminal illness that may require you to take FMLA or personal time at frequent intervals. They will be much more understanding than if you keep calling in sick.
- Write, tell, or show your spouse/partner/friend/parent how much you love them. It might not mean much to them later, but it does now. It will be something to draw upon later, when they are no longer aware or care.
- Accept. I have said this many times before, but it really is the key to getting through. Accept that they will not be aware. Accept that the disease is terminal. Accept you have to do and deal with the unthinkable. Accept that not everyone you know will understand. You may lose friends. Your family may be in denial. You may feel alone. You’re not. There are millions of us out here, you just have to look for us. Accept the reality and don’t pretend its not true. Oh, it will work for a while, but eventually it will come crashing down around you. That comfy world of “it’s not really happening”. It is. This cruel, indiscriminating bastard of a disease will drag you down if you let it. Don’t let it. Accept.
- Make time for what you want. Well, I know that what you want is for it to go away like it never happened. But that’s not going to happen (see item 5). above). You have to learn to want different things, in addition to your changes in need. You need support. You need him/her back. You want them back. But you can’t have that. So, look for something that will take you away (literally and figuratively) from the storm that your life has become. Even if you have never tried yoga, meditation, pedicures, massage. Whatever it takes to remove your mind and soul from the horror, just do it. (I seem to be quoting Nike a lot just lately, but it’s so appropriate!)
Priorities. They change all the time throughout life. Normal life.
Flexibility is the key to prioritizing in FTD. Be prepared to change your plans in a moment. If you have children, remember what it was like to get ready for a trip or even just a day out when they were small? A military exercise, right? If you don’t have children, think about how you would herd cats. Getting a person with FTD ready for something is much the same. So you have to prioritize. Do all the cats have to go? Do they all have to be ready at the same time? Do you have to take your loved one? Can someone stay with them?
Priorities. Is it absolutely vital that you go on vacation/to a restaurant/ that family wedding? We hold on to these things because we are desperately trying to maintain some semblance of normality. To continue doing what we would have done before FTD came to call. Because, deep down, we resent that our lives have been turned upside down for no apparent reason, other than the universe is conspiring against us having the life we thought we would have. We cling lovingly to the old ways. The old “us”. The old routine. That’s human nature. We desire stability and familiarity. So it’s very scary when those things are chipped away. Piece by piece, our lives as we have come to know them slowly disappear. So the priorities must change too. Now it’s important to savor every minute. Every moment before it is lost forever. Every smile, every kiss, even every grumpy exchange. For those will become precious too.
I will close with the telling of a story given to me in an FTD support group to which I belong. It tells of a breakfast. An egg and bacon breakfast. The chicken gives her egg willingly then walks away, satisfied that she has helped someone with her donation.
The pig is totally committed.
You are the pig.
All of us FTD caregivers are pigs. Totally committed to easing our loved one’s journey. Prioritize both of your needs. Go with the flow. Change on a dime. Love the one you’re with.
Be the pig. Oink! Oink!