Have you seen the headlines about the negative effects of caring for loved ones? Here are just a few of the headlines I’ve seen in the past few weeks: Dementia Caregivers are at an increased risk for developing dementia. Older Caregivers at higher risk of early death. Study shows 65% of Caregivers will die before the person they are caring for. Caregivers face daily stress causing many negative health issues.
I already have a hatred for all types of dementia, but articles like these make me fighting mad. Don’t get me wrong, I’m not mad at the people who write these articles. I’m angry at Frontotemporal Dementia, and every other type of dementia. It’s almost like dementia is the personification of evil. Not content with destroying one life it sneaks into our lives to kill both Harriet and me. Therefore, I have resolved to study, learn, and put into practice anything that will make it so that I will be around to take care of Harriet until the Lord calls her home. I hope you will join me and together we will stand against this disease.
One of the first things that must be done, if we hope to beat dementia’s plan for our lives, is to accept the new reality. We must go way beyond the kind of acceptance that says, “Yes, I know my husband has Alzheimer’s and that he is dying.” That is a good beginning but unless you take the next step, and begin to relate to your husband in an appropriate manner, your life will be filled with grief, anger, and stress, and those negative emotions will be the death of you.
If you read the series on decluttering your life, you may recall in part three that I went into much detail about the death of our sex life. I guess I wasn’t as clear as I hoped I would be, because some people completely missed what that article was all about. I was attempting to show my complete misunderstanding of what was happening in my marriage. Harriet hadn’t yet been diagnosed with dementia, nor in fact was the idea of dementia on our radar. When she became totally indifferent, or hostile about anything romantic, I thought, her behavior proved that she no longer loved me. This was a completely wrong interpretation of what was going on. She wasn’t a frigid Ice Queen, nor had she fallen in love with someone else. The problem was that her brain was dying. Dementia slowly kills the sick person’s brain. If you don’t really understand this, and act appropriately, you may be the next victim of Caregiver mortality,
This is why we must get training on not only what this disease is but how to care for our Spouses. I was watching Teepa Snow doing a presentation in Naples, Florida entitled, Making Visits Valuable. Her presentation is free on You tube, (I put a link on my blog site to the presentation), but her insights are priceless. She said that often the troubles and problems we have with those we care for are of our own making. That while they are the ones with dementia, we behave like we have the brain damage. She asked the question, “How would you treat someone with congestive heart failure?” Would you go up to them and start yelling, “You’re not breathing right again!! Didn’t I tell you to take deep breaths? What’s wrong with you, pull it, together will you?” Or what about someone in acute kidney failure? Would you walk up behind them and, addressing the kidneys start scolding, “Look, your output is totally inadequate, it’s pathetic. You’ve got one job to do, filter the urine before it poisons the rest of the body. That’s what you’ve been created to do. So, would you please do your job?” If you don’t think demanding, yelling, and scolding will help with any other organ failure why do we think it will when it is the brain that is failing? Why do we agree that our loved one has dementia and then get angry, frustrated, and sad when they act like it?
When indifference and hostility became Harriet’s response to my romantic gestures, I didn’t know what to think. Harriet is the first, and only, person I’ve ever had sex with, so I don’t have any experience to draw on when it comes to rejection. You can understand why I was upset and continued to be upset by this development. However, now that I know that Frontotemporal Dementia is destroying her brain, and from all reports, romance is one of the first areas destroyed, how should I respond to her indifference? I can either agree that FTD is killing her brain and accept both the fact of it and the consequences. Or I can agree that her brain is dying and continue to be angry, upset, frustrated, and stressed out because we no longer make love. The first choice leads to life, the second will take me to an early grave.
This is one more reason why I hate this disease. I am sad and grieve the loss of something very precious and beautiful to me. That’s a normal response to a loss. But now that I have really come to understand and believe that FTD is destroying her brain, the death of our love life is easier to live with.
Now that I know, agree with, and accept that FTD is destroying Harriet’s brain there are many other things to watch out for. As more and more of her brain is destroyed, she will lose more and more abilities. Therefore, I must take care to protect her from herself.
In the blog, Baby you Can’t Drive My Car, I spoke of our disagreements about her driving. At this time, she can drive short distances, but only during daylight hours. Even this is dangerous, but it is a compromise for now. We both know, the day is coming when she will never be able to drive again.
Have you gotten phone calls, emails, or Facebook messages from people trying to scam you out of your hard-earned money? A while back Harriet got a Facebook message from one of my cousins who was celebrating a huge windfall. It seems that my cousin had won a contest and had gotten a check in the mail for $150,000. Harriet responded appropriately with congratulations and best wishes. My cousin went on to say that she had seen a list with Harriet’s name on it and that we were about to win big too. Harriet said she hadn’t heard anything about it. My cousin gave her a phone number to the contest headquarters so that she could check it out herself. You can imagine that Harriet was thrilled because she knew and trusted my cousin and we could use the money. I wasn’t home at the time and the more Harriet learned the more excited she got. I walked in the door to see her happier than she had been in quite some time and she began telling me about the contest. It sounded good until she got to the part where she had to wire them $1,000 to cover processing and taxes. Before FTD Harriet would have read them, the riot act and hung up on those crooks so fast their ears would ring for a week. Sadly, she wanted to go for it. I told her it was a scam, she said, “How do you know? Besides, it’s only $1,000.” I quickly called my cousin who assured us that she hadn’t won anything, nor did she send Harriet a message on Facebook.
How did I respond to Harriet almost being scammed out of all that money? Since I know she has brain damage I was very patient with her. There is no point in getting upset, yelling, screaming, saying DON’T YOU KNOW BETTER THAN TO SEND MONEY TO CROOKS!!? Because, she doesn’t know what she used to know.
My job as caregiver is to protect, be patient with, and care for Harriet. When she is illogical, angry, negative or indifferent towards me, I must try to take it in stride. She has brain damage which is getting worse by the day. It is foolish to get upset if she is rude or thoughtless. I’m not always successful at remaining calm and peaceful, but it really does help to know that all the negative changes are because of her sickness. If she didn’t have FTD she wouldn’t be acting this way.
Please, get training. Learn how to be the best caregiver you can be. It will make this hell you’re going through more bearable. Don’t let FTD, or any other Dementia, destroy both your loved one and you. You’re in the fight of your life! No soldier goes to battle without training. Don’t think you can do this without training or by yourself. Let’s stand strong together! May God bless you.
A Caregiver's Journal 