H & D Thinking Out loud

Harriet’s Thoughts:

I have been reading this amazing book and it is so helpful in understanding Alzheimer’s Dementia (AD) and Frontotemporal Dementia (FTD). The title is “What if it’s not Alzheimer’s? A caregiver’s guide to dementia.” Features the latest information on Frontotemporal Degeneration.” Edited by Gary Radin and Lisa Radin. Gary is Lisa’s son and together they cared for, father & husband, Neil Radin in their home for four years.

FTD was known as Frontotemporal Dementia, but now is known as Degeneration. There can be a lot of confusion over Alzheimer’s and all the different dementias.  The aforementioned book is a real gem for helping us to understanding differences.

I think it is important to know what dementia is. Dementia is a clinical syndrome or a group of symptoms that show that something isn’t working right in the brain. There are multiple types of dementia and each has a set of symptoms to show where the damage may be happening in the brain. I can’t say that I know where they all break down. I don’t have a medical degree, but I’ve known many people with different types of dementia, such as, AD, & FTD. I know what I have and how it started with mild cognitive impairment. I’ll talk more about that later.

This is the best illustration I’ve ever seen about dementia

We didn’t know what was happening with my health. I went into menopause early and the doctor I went to, blamed every problem I had on that, or the stress in my life. I really slept so poorly, and she had me take different drugs. I know now, that the one I took the longest, was terrible for me! Ambien was absolutely the worse drug possible for me! From what I’m reading now, no one with dementia, should take it ever!

FTD causes me a varying range of problems. It’s called FTD because of the 3 lobes that are affected, the frontal lobe and the two side temporal lobes. The degree I am affected shows how much my brain is damaged. I had to quit my library job early, at 62. I couldn’t remember newly taught tasks. They just didn’t get into my long-term memory. Now, I can’t easily plan or make, big family meals. Something I used to love to do. But now, it takes so much more work.  

If I try to speak to People about my Dementia they often respond that they have the same problems. They think they are being supportive, but to me, it feels like, I’m being dismissed.  It feels like I’m being told, “Just Shut up about it. We don’t want to listen to anything you have to say about this.”  Well, I don’t think they have the same problems in type or degree. I go shopping and sometimes I can’t figure out how to pay for it. My sister-in-law Cindy is willing to go anytime I need her to go and I really appreciate it! She never makes fun of me or makes me nervous.

Another issue is my speech. Sometimes I have problems with speaking. I will try and I stutter, or I use the wrong word. I might start talking and not be able finish because I can’t remember what I was saying. It is so exhausting, Dave is really good about checking with me to see if I’m ok, or if I need to leave a party and go home. It can it be really difficult to function in a big group: too much noise, conversations going on too fast, too many people to focus. It is really stressful to try to navigate something like that.

FTD causes me to have problems with decision making. I used to be so good at this. Now it is so hard. I’ve read that this is common. Dave has learned to give me no more than, two choices. He will ask, “Do you want to go to Big Boy’s or Pañera’s.”  When he’s trying to be funny, he will give me two choices that I would NEVER choose. “Do you want to go to White Castle or Taco Bell?” If I want another choice, I can always ask for it. He will say, “Do you want taco Bell or Big Boy?” I answer, “Not really, what else were you thinking of?” I feel a bit like a child, but we deal with it.

Writing this blog really tires me out. I meant to say a lot more about the book but got sidetracked. Next Friday I will do a complete book report. If you want to understand Frontotemporal Dementia get a copy of “What if it’s not Alzheimer’s? Edited by Gary Radin and Lisa Radin. When you’re finished, you’ll know more than some doctor’s I’ve seen.

Thank you for your continued prayer support and for following our blog.

Love, peace, and joy,

Harriet

FROM DAVE:

Everything here is about the same. I’m still on this emotional roller coaster. It’s almost like being a teenager again. Happy laughing, something, anything goes wrong, Mad as hell, flowing profanity. Or feeling quite good watching television, some sappy commercial comes on, weeping like a _______ (Fill in the blank. If I do some group will be upset with me.) The thing is, I don’t yell, curse or scream at the dog or Harriet, yet both are very unhappy/angry when I lose my temper. In fact, it used to be that when I would come home Daisy would run out to greet me. Now she hides in the bedroom until she sees what kind of mood I’m in and what snack I brought her. 

Of course, I don’t like being around angry cursing people either. I would run away but I have to take me along. So Wednesday I’m going to see a therapist at Catholic Charities in Adrian. Pray I get someone that is right for me. I’ve known some therapists who went into the field because they needed therapy. Then next Friday I’m going to see my primary care physician for a complete physical. That way we can rule out something like diabetes, or thyroid problems as the cause of my insanity.

Things with Harriet are progressing quite slowly. FTD is a lot like MD in that, someone with MD will have an episode. They will have a difficult time walking and must be in a wheel chair. However, after a week or so, things start coming back and they will regain almost everything they had lost. (This illustration might be completely wrong, I was a pastor not a doctor, but it is what someone who had MD told me.) So, it’s three steps forward and two steps back. FTD has the same step pattern. Last Saturday, at a party, Harriet and I were speaking with some people. Harriet would tell a story, someone else would comment. A few minutes later she would tell the same exact story for the second time. Then I made a few comments. A bit later Harriet told her story for the third time, but added my comments in, as if this were the first time it had been said. I was very unhappy to see her do this. However, she hasn’t done it again, but does seem to have a bit more difficulty speaking. Three steps forward, two steps back.

I had read an article on one blog about the death of romance in couples where one has FTD. The author had interviewed quite a few caregivers about how they dealt with this loss. Most people really enjoy being held, kissed, and making love and feel quite sad about the loss of this type of intimacy. Try to put yourself in their place, what would you do if your spouse suddenly had no interest in lovemaking, and any attempts were met with hostility or indifference. Usually this is one of the first things that happens in a person with FTD. Before the diagnosis, the Caregiver feels rejected, wonders if their spouse has found someone else, and waits to hear the old movie line, “I don’t know if I ever did love you. On top of that, the whole thing become weird. Many Caregiver spoke about how their LO only wanted to make love when they were stoned or drunk. By the time the diagnosis came, sex was a dead issue, and many were thinking about divorce.

However, now that this new behavior has a name, a cause, and a diagnosis, the Caregivers didn’t feel free to leave. After all the vows were, “in sickness and in health, for better or for worse,” and most people, feel bound to those obligations.

The solution that many caregivers came up with was to find, a friend with benefits. The caregivers said, “I promised to remain faithful until death and that part of my LO is totally dead. I will take care of him/her until death, but I cannot live a celibate life.” I want to share a funny story about what happened the day after I read this article. But please, don’t get me wrong, I sympathize with them. I know what it is like to be in this position because I am. Would I like to have a marriage filled with kisses, hugs, cuddling, and love making? Of course. It’s not just about sex, it’s about that special connection that you feel just being hugged and kissed. I cannot judge people who are trying to make the best of a bad situation.

I had read the blog on Friday evening, and was thinking about it. (The beginning of temptation?) I went to church on Saturday afternoon. On the way into church there is a statue of St. Joseph holding the baby Jesus. I looked at that and burst out laughing.  The thought came to me of St. Joseph going up to the Virgin Mary and saying, “Since you’ve got this perpetual virginity thing going on, I’ve decided to find a few friends with benefits,” The reason that thought was so funny to me was, it’s just so absurd. Such a comment wouldn’t have ever come out of St. Joseph’s mouth.

What will I do on Wednesday if I go to the therapist and they say, “In order to get rid of your anger, sadness, and grief, you need to find, a friend with benefits? (Just trying to be funny!!!)

Okay, that’s enough about that subject!!! (Harriet is reading over my shoulder.)

May God bless you in your journey. I will keep you in prayer and I hope you will pray for me.

 Dave

8 thoughts on “H & D Thinking Out loud

  1. I know that what you and Harriet are dealing with is serious business, but I do have to chuckle once in awhile with your turn of a phrase.

    Like

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