In the last post I spoke about the computers that make sure jetliners go from point A to point B without a glitch. This is done by means of mid-course corrections, small incremental corrections in the flight path. I went on to talk about how we too, as caregivers must make mid-course corrections in response to the changes in our Loved One’s health, behavior, and outlook. The last blog was about taking care of the person with dementia. Today I would like to write about taking care of ourselves.
I recall a time when I was a passenger on a jet that flew from Ft. Myers, Florida to Detroit, Michigan and we went right through a thunderstorm, instead of skirting around it. There were a bunch of children, in the seats, behind me. The ride was starting to feel like we were on a roller coaster, not a jet. I thought the children would be afraid, but every time that jet started bouncing around, they would laugh and yell WEEEEEE! Most of the adults were not quite so joyful. In a situation like that I always keep an eye on the flight attendants. If they seem afraid then I figure we could be in real trouble. I wasn’t too concerned on this flight until the captain told the flight attendants to get into the jump seats, fasten their seatbelts and hang on.
Have you ever felt like things were going well, just to run into a thunderstorm of contention? Don’t you hate it when you get in the middle of a power struggle, with anger, yelling, name calling and resentment? What can you do when your loved one is being completely unreasonable, illogical, and just down right stubborn? At a time like that you need to make a real quick midcourse correction, using all the wisdom, patience, and training you’ve had to calm things down.
Right now, you might be saying, “??WHAT?? Hold on!! I haven’t had any training.” With what lies ahead of us, we need all the help we can get. The first thing to do is to get training, so you’re not constantly being hit with one negative surprise after another.
A caregiver without training is like a pilot who turns off the computer and says, “I’ll take care of all the midcourse corrections from now on!! I can fly this baby by the seat of my pants.” If the pilot is going from Chicago to Detroit, there probably won’t be a problem. However, if he is flying from London to Tahiti, he, and everyone depending on him, is in a world of hurt. The Pacific Ocean is huge, and Tahiti is very small and easy to miss. Ask Amelia Earhart, you don’t want to get lost while flying across the Pacific Ocean. The thing is, being a caregiver for someone with dementia, is more like flying from London to Tahiti than from Chicago to Detroit. We’re in this for the long haul and there are some potentially huge thunderstorms ahead.
These thunderstorms cause much stress, taking a mental and physical toll on the care giver. I think the lack of training is why so many caregivers will not live to attend their Loved one’s funeral. Isn’t it sad that so many people will work themselves to death because they think, “if I don’t take care of her who will?” About a year ago 60 Minutes told the story of Mike and Carol Daily. Mike has been Carol’s caregiver for over ten years. He thought he should do everything himself and wouldn’t ask others for help. He came to the place where he knew it was killing him. Mike had to ask himself, who will take care of Carol after I’ve died because I did not take care of myself? There is a link to a report about them above this article.
If you haven’t gotten any education about dementia, caring for people with dementia, or how to take care of yourself, consider this the first midcourse correction. DO NOT go another day without taking the first step in getting educated. The wonderful thing about living in the 21st Century is, you don’t have to leave home or pay any money to get all the education you need. You can get free training on line. Go to You Tube and look up Care blazers. Dr. Natalie gives wonderful lessons that are easy to follow. Her approach is one on one: that is, she is sitting behind a desk speaking right to you. A bonus is, she offers a free, Careblazer Survivors Guide that you can download. The other You Tube presentation that I have found to be so helpful is, Teepa Snow’s, Positive Approach to Care. Teepa is funny, insightful, and teaches in a way that helps you remember the lesson. Most of her videos are of group training sessions with play acting.
As I mentioned above, selfcare is vitally important, which is something I’m not very good at. You may remember that in the article, You Say You Want a Resolution, I said I was going to exercise and lose weight. So far, I think I exercised once in January and once in February, at least, I know I’ve exercised twice so far this year. My weight went from 224 down to 214 and back up to 228. However, I still don’t think getting in shape is an optional thing for me. Today is March 2 and Lent starts on Wednesday. Therefore, I’m joining with some other people from my church to do a 90-day perpetual fast/exercise program. (I’ll let you know how I’m doing after Easter Sunday, which is about the halfway mark.)
I’m sure you’ve heard or read about how important a good night’s sleep is for your health. This is the first time in my life where I haven’t been sleeping well. I would like to go to sleep around 10:30-11:00 O’ Clock and get up around 6:00. I’ve always been a morning person and do my best work in the early part of the day. However, as I write this it is 5:45 am and I haven’t been able to go to sleep yet. Some nights I don’t sleep more than 4 or 5 hours and experts say everyone should aim for a minimum of seven. The 90-day program, I spoke of above, requires the participants to get seven hours of sleep a night. My midcourse correction will be to turn off all computers, lap tops, and phones at 9:00 p.m. My phone will be plugged in somewhere else than my bedroom. I will attempt to retrain myself about getting to sleep. This is because the long-term consequences of sleep deprivation are really bad for us.
I really need to get better at selfcare. My mom died in April of 2017 and my dad, who is now 93, wants to go with her. Losing one parent was difficult enough. I cannot imagine how it would feel to lose both parents really close together. My sisters and I feel so blessed that dad is still around. I can’t help but think of the pain and heartache my kids would have if Harriet and I died around the same time. Think of your children and grandchildren and the heartache they will have if you die before, or shortly after, your Spouse. One midcourse correction you might need, is to see that selfcare is not selfish. You take care of yourself so that you can care for your loved one until the day of their death. You take care of yourself because of the other family members who love you. You take care of yourself because your loved one’s ability to think of others is gone, whereas you still have that ability. It’s not enough to know that this is true we need to walk this out.
One difficult thing, for me, is to realize how much Harriet has changed. The Dementia has been working for quite a while. The weird thing is when it comes to certain things, I act like I know that she has FTD. I will say things like, “Harriet cannot use a computer anymore without a great deal of help,” or “She used to love to put on lavish dinners but now it’s just too much for her”. However, at other times I will act like nothing has changed at all. The other day she was having quite a lot of trouble getting prescriptions refilled. Her Pulmonologist had been contacted and called in the two scripts that he was responsible for. Our primary care doctor was not so accommodating. The pharmacy had called her office asking for refills, Harriet had called last week, and I called on Monday, without any of us getting a response from them. So now we’re down to crunch time; it’s Friday and Harriet has only enough pills to get her through the weekend. The thing is, in the past Harriet would have gotten on the phone and straightened the whole thing out. Instead she sat at the table with all her pill bottles in front of her and saying, “I don’t know what to do! I’m so confused!” I sat down beside her and asked what was going on and she told me about the confusion. So, I tried to be very logical and explain what had happened so far and what needed to be done today. When I was finished, she had the same worried look in her eyes and said, “I don’t know what to do, I’m just so confused.” That was the moment for my midcourse correction. I couldn’t help her by explaining anything, so I asked, “Would you like me to call the doctor and straighten the whole thing out?” She looked relieved and said, “Would you please?”
This is a reoccurring problem for many of us. Harriet and I have been together for fifty years and I know how she thinks. Except, what I think I know isn’t true anymore and, in fact, continues to change as time goes on. We can get so angry and frustrated with our Loved Ones when we explain things and they just look at us. It’s even worse if they have a medical condition called, Anosagnosia, which makes it impossible for them to realize that they have dementia. So, they do something we don’t like, we try to discuss it and wind up feeling like we are being disrespected. This is the place where we can decide to let the thunderstorm rage or live in peace. What do you do when logic doesn’t work, your husband doesn’t even agree that he has dementia, and sees your help as you causing trouble for absolutely no reason? Teepa Snow says, this is where you stop… take a deep breath and let it go. You can either fight every day, which is really bad for your health, or you can pick your battles. If something isn’t dangerous, and won’t lead to a catastrophe, let it go.
Harriet and I do not have a lot of this type of thing yet. If you read Declutter part 4, you know that romance was such an issue for me. When I attempted to talk about it, she would look at me like she couldn’t quite understand what I was saying. When I said something to provoke a response like, “I think you find me completely repulsive,” she would just sit there and not say a word. The more I tried to resolve the issue the angrier and sadder I got and the more frustrated she became. She couldn’t figure out why I kept harassing her about something that was perfectly fine. So, I thought she didn’t love me, and she had no idea what was going on. The more I studied about FTD the more I realized that our love life was the first casualty of this disease. It wasn’t a lack of love, rather FTD was changing her thoughts, desires, and ideas. Do I like this situation? Of course not. Will logic, arguments, yelling, sulking, or anything else I can do change anything. Sadly, no. My choice is to let it go and live in peace or try to get what I want and have one thunderstorm after another.
Before Glen Campbell died of Alzheimer’s he wrote and sang a song about his worsening condition. The words speak to this subject. Some of the lines are; I’m here, but yet I’m gone., I don’t play guitar or sing my songs,…I’m not gonna hold you like I did,…It’s not gonna hurt me when you cry, I’m never gonna know what you go through, all the things I say and do, all the hurt and all the pain, only one selfish thing remains, I’m not gonna miss you.” The song says it all. I’m not the man I was and never will be again. It is no longer possible for me to love, cherish or care for you as I once did.
Do you hate this disease as much as I do? Then don’t let it kill both of you! Please, do whatever it takes for you to get to the end of this in good mental, physical and spiritual shape. Be a survivor, your children, grandchildren, and all who love you will be so happy that you are.
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I’m making a survivor’s declaration/check list/guide book for my self. It’s a work in progress right now. I have a picture, in my mind, of a group of us standing together in defiance against this disease. I want say to FTD, ” I know you want to destroy both Harriet and me. Your plan is to see us both dead. I don’t know what lies ahead. I might be bankrupt, out on the street, with no place to call home. But when you have done your worst, and this terrible time comes to an end, I will still be standing. I will be standing because I am not alone.
When I get this finished I will post it. Will you join me in fighting against the evil plans FTD has for us?