I sit here, on April 2, writing this week’s Caregiver’s Survival Blog. On January 2, just three short months ago, I wrote the blog, You Say You Want a Resolution. I wrote about how I was going to get in shape through diet and exercise. I resolved to go from 220 pounds to 190. In the past three months I’ve gone from 220 down to 214, back up to 228, and down to 215. My exercise schedule is mostly non-existent. One week I will exercise two days in a row, following week nothing, the week after that once, and so on. Change, real permanent change, is so difficult as to be almost impossible.
Through the years I have seen people make real, substantial, life altering, and permanent change. So, why can’t I? I think it’s because I don’t really believe that the change is imperative. My friend was a smoker who woke up, every morning with a cough so bad you would think his lungs were coming out. However, as soon as the coughing spasm was over, he would light up his first cigarette of the day. He would ignore everything that said, the cigarettes are killing him. Be the time he realized what smoking was doing to his body it was too late. He went to his doctor to get his test results. The doctor says, “I’ve got terrible news, you’re going to die in ten,” “TEN!” He screamed, “Ten what? days, months, years???” the doctor went on, “nine, eight, seven…”
In the Book, A Christmas Carol, the miser Ebenezer Scrooge meets the ghosts of Christmas past, present, and future. Scrooge has his eyes open to what a miserable, self-indulgent man he has been and then is given a little death therapy which causes real, lasting change. By the end of the book old Ebenezer is one of the most generous, joyful, and loving men in London. In the movie, What About Bob? Bill Murry plays the terribly clinging patient Bob Wiley who stalks his doctor who is on vacation. Dr. Leo Marvin decides the only way to be free of Bob is to kill him. Bob doesn’t die and thinks the entire thing has been death therapy. Bob tells Dr. Leo, “Your death therapy cured me, you Genius!!!” These stories have some truth behind them. The people I have seen stop smoking, stop drinking, lose hundreds of pounds, etc. are people whose doctors have said, “Unless you make this change, you’ll be dead in a matter of weeks.
I don’t think I need to be morbid, or obsessive about it, but I do think I need to accept the fact that Dementia is killing Harriet. I also need to believe, with all my heart, that unless I make some real substantial changes, her disease will kill me too. I need to know that I know, that Harriet is never going to get better, only worse. The woman I love will need me more and more, and unless I make these changes, I will fail her completely. This is my death therapy.
So far, we have discussed the need to stand together against Dementia’s plan for our lives. Which of course, is to kill all Caregivers, so that their LOWD will live and die alone. My commitment is to cheat this disease out of as many Caregivers as I can, starting with myself.
I’ve been thinking about Caregiver Survival and what you and I can do to live on until this terrible time is over. I have a bad habit in that, I will plan, think, read, and write about how to proceed and do nothing except plan, think, read, and write some more. If I really want to live long and prosper, I will need to become a person who walks out the plan and does the necessary things to improve my life.
You may recall that the first step is training and education. Before Harriet was diagnosed, I didn’t even know FTD existed. I am still reading everything I can find about FTD and watching all the You Tube presentations I come across. I just purchased, the booklet, Frontotemporal Disorders, Information for Patients, Families, and Caregivers. This 31-page booklet is published by the National Institute of Health and is a good introduction to FTD. This education has lowered my stress, grief, and anger because I now know that much of the behavior that I hate, is the disease, not Harriet.
However, it’s not just enough to know about the disease, I also need training on how to minister to Harriet as well as I can. There are wonderful You Tube Videos, Seminars, and conferences to help us in this quest. I love Teepa Snow’s presentations and learn a lot from her. I also love Dr. Natalie in the Care Blazers series. Wow, such great teaching on You Tube. Best of all, It’s Free! I continue to get educated and trained because I need all the help I can get.
One of the things I keep reading, and hearing, is, don’t try to do this by yourself. You’ve probably heard this advice a hundred times. Don’t be a lone Ranger, get help. This is vitally important because, you cannot do the one thing to guarantee your survival by yourself. Which is, Take care of yourself.
I know some of you find this impossible to do. You get up in the morning and the first thing you get to do is clean the bathroom. Your spouse can’t seem to remember how, or where, to go anymore. So, you wake up to the aroma of urine and crap all over the place. You’ve cleaned the carpet so many times that there’s bald spots in it. What a way to start your day. The idea of self-care is absurd, ridiculous, completely insane. However, much self-care takes just minutes a day. Let me give you an example
One of the easiest things Teepa Snow teaches is that we should take 3 deep cleansing breaths, 5 times a day, (or more if needed). (Breathe in slowly and deeply through your nose, hold it. Now breathe out slowly through your mouth. Do this, 3 times.) Pretty simple, wouldn’t you agree? Studies have shown that most Caregivers are under a terrible amount of stress. This stress causes high cortisol levels in your blood and continued high cortisol levels are very unhealthy for us. If you regularly have high cortisol levels you will develop high blood pressure, high cholesterol levels, high heart rate, and poor blood sugar levels, and weight gain. Sadly, people under continuous stress with high cortisol levels are much more likely to develop dementia. These same studies demonstrated that people with high cortisol levels, who do deep breathing five times a day, bring their cortisol level down to normal. Just knowing this is not enough, we must follow through and do it. Like it says in the Scriptures, “Be a doer of the word and not just a hearer. Don’t deceive yourself.”
Therefore, you must develop your care team. Which means you need to come to the place where you’re willing to ask for and accept help. If someone asks, “What can I do to help?” you can answer, “I have to run some errands this week and it’s so much easier if I can leave my spouse at home. Would you be willing to stop by for two or three hours and stay with them?” Of course, you will need more help than just those times when someone asks you what they can do for you. A weekly schedule should be set up. Your Care team, made up of loved ones, friends, relatives, Respite Care, Hospice, in home care, etc., need to be there to help on a regular basis. This way you have something positive to look forward to and can schedule things in advance.
What can you do when you’ve got three or four days with no one to help you? Ask yourself, “What are some things that bring me pleasure now when I can’t leave home. Usually these are simple things, singing favorite songs, a hot shower, reading, watching television and movies, doing something with arts and crafts, cooking, eating, exercise, etc. You might have to be creative and flexible to do any of the things you enjoy. For example, right now Harriet isn’t sleeping well at night which means that she might not get out of bed before ten or eleven in the morning. I can go in the basement and exercise on the weights, treadmill or stationary bike. (By the way, regular exercise lowers cortisol, decreases depression, and stress, and makes a person much more positive and self-assured.) If she gets out of bed, I can hear her walking around. When I get up early enough, I can pray, read, write, sing, draw, paint, etc. If she needs an afternoon nap that gives me another opportunity to do something I enjoy.
One of the people on our care team is our sister-in-law Cindy. She has offered to come by anytime I need her. Tomorrow, Cindy and Harriet are going on a shopping trip looking for the perfect dress for the mother of the groom. Our son was married a couple of years ago by the County Clerk in Detroit. Later this summer Zach and Gina will have a church wedding. Big plans for a real celebration are being made which, of course, includes the right dress. Again, a good care team is vital.
Finally, if it is going to take some or most of your savings to have helpers come into the home it is a good investment. You might say, “If my 401-K is used up paying for caregivers, what will I do? I need that money for the rest of my retirement.” While it is sad to see money you planned to use in your retirement disappear, what good will that money do you if you develop dementia or are dead? Remember, be wise, live for today. But whatever you do, find a way to take care of yourself. Self-care is not selfish when it is done so that you will be around to take care of your LOWD until the day they die.
Unless God gives us a miraculous answer to prayer, Frontotemporal Dementia will kill Harriet. I cannot afford to let it kill me. Therefore, I resolve, every day, to do all that I can to live my life to the fullest. I will do what I can to continue to be in good health. I will get educated and trained, develop a care team, and do whatever is best for Harriet’s care. I expect these to be some of the worst days of my life. But when it is all over, and dementia has done its worst, I will still be standing. I am not alone, and together we will make it through.