Do's and Don'ts (for caregivers)
Here are a few observations for now. I seem to be changing each day. One day I move forward and one day I move back. Feel free to add your own for your fellow caregivers. We are all in this together.
Forgive yourself. You know for what. We are all guilty. We have all done the best we could at that very moment in time. It is easier to look back and know with such clear 20/20 vision what you should have done and how you should have done it and to tell yourself over and over again that you could have done it for such a short amount of time. No. You couldn’t. If you could have, you would have. And if it was that easy, well, none of us would have the same feelings of guilt you are carrying around like an extra sack of flour with you everywhere. Let it go.
Hold grudges. Just because you were living in your nightmare doesn’t mean your co-workers, friends, neighbors or relatives were. Every person has to experience this nightmare themselves to get it. Otherwise they just won’t. It isn’t their fault.
Take videos. Take pictures. If your person you are caring for can, have them write stuff. Anything. You will want their handwriting to stare at later. You will want to listen to their voice message over and over again. If you are in the earlier stages, sit with them and video them answering your questions about their life, their dreams, their wishes. As they progress, keep going. When they are gone, you will need these to remind you it was time for them to go.
Wallow in self pity. It’s ok to sit and have a good cry. It is ok to confide to your closest friends that you don’t know if you can do this one second longer. It is ok to question your sanity. But it is not ok to park yourself in self destruction and stay there for eternity. We only have one life. For some reason, part of your life is meant to be caring for someone who needs you. Then you will be able to start again or move on or whatever it is you are meant to do next. For now, be sad, be angry, but pull yourself out of that mindset and find something, however small, to appreciate and be grateful for.
Ask for help. You cannot do this alone. Do not even try. People want to help. They can’t save your husband or your Mom or your sibling. But they can save you and that is what you need. It is what they need. Makes people feel good about themselves. Let them. When they ask what they can do, have a list ready. That is right. Make a list and when you are asked, you will have an answer. Because when they ask you will not be able to recall the hundred things that you need help with.
Alienate your friends. It is so easy to shut down. Collapse into your own dark, depressing world. Fight. Fight hard for you. It is not easy and it may take some time, but do what you have to do. Stay as social as possible. Turn down invites as you need to, but if possible, have someone come stay with your charge while you go to get coffee, go to a movie, go to dinner. Join that book club or garden club or just go for a quick bite with friends. Make it a specific day and time, EVERY WEEK. Don’t make excuses why you can’t do it. Your friends are your lifeline. Even though they may not understand each and every sordid detail of how awful your life is, they care. And that is enough. Go have a glass of wine, try to talk about something other than the huge mess you just had to clean up and the missing car keys and the loneliness that surrounds you. Smile on the outside and it will cause you to smile on the inside.
Plan. Meet with your attorney. Make arrangements with your chosen funeral home. Start the obituary (you will not believe how difficult this is to write). If you are going to do any kind of donations (brain or body) get that started immediately. (this must be done while the patient is still able to travel) However much you do now will only make it easier later. Discuss options and what is wanted. I recommend reading the book Being Mortal by Atul Gawande. This is not easy, but putting it off doesn’t make the need go away. Eventually you will have to make decisions and do these things. If you don’t have power of attorneys and end of life directives, no better time to get started than now.
Most of all, be the best you can at that very moment and love yourself through it all. Being a caregiver for a dementia patient is one of the most difficult tasks in the world. I liken it to Post Traumatic Stress. Symptoms and the mental anguish are all there. There is a world that surrounds you with love, let them. And be sure to love yourself too.