wings and things

Parkinson’s Disease Dementia and FEAR

on May 9, 2014

I don’t think many people recognize, and acknowledge, the kind of fear that a person with any kind of dementia can experience. Anthony has PDD but can still vocalize his fears, especially after the sun goes down (Sundowner’s syndrome).

About 15 minutes ago, I rang him on his new phone and he actually picked up (doesn’t always remember how) and he was frightened and utterly delusional, thinking that he was at his brother’s house and that a storm had destroyed it, and asking me to come and rescue him. His words were garbled and frantic. I tried to calm him down, then told him I would ring the nurse but he said I wouldn’t be able to get hold of a nurse because of all the workmen were around and it was dangerous.

So then I rang the nurse and told her and she said she would go and check on him and get back to me. There is now an anti-anxiety drug that has been prescribed for these occasions so I reminded her of that.

Now I am waiting for her phone-call. As I wait, I think, with great distress, about how, from time to time, Anthony becomes absolutely terrified at night. PDD and, paradoxically, some of the medications used to treat it, can cause hallucinations, paranoia, confusion of space and time, and fear.

Anthony’s bouts of terror usually only last about half an hour which is the same amount of time it would take me to drive into town and ‘rescue’ him.

When is scared like this, he becomes more articulate despite the fact that what he describes isn’t real. Very soon, I think, he will not be able to talk at all, so it is very important for me that I understand his fear, and try to reassure him. I was in this afternoon, seeing him, and there was no indication he might have one of these ‘episodes’ despite the fact that he was very confused.

I am not just spilling my guts here – I am also saying that if your loved one has dementia but has ceased to speak, they might have the FEAR thing too so your voice on a phone, your visit, your touch, a hug, a cake, a blanket or a cup of tea might just alleviate that.

My heart breaks for those suffering this kind of fear in silence. I just spoke to the nurse and Anthony is apparently okay again and he is being put to bed but what if he is still really afraid? I am so worried, but I won’t be able to see Ants until tomorrow morning by which time he may have forgotten the fear. Oh I hope so.

He is, and always will be, my hero.

[ps. not keeping up with other blogs atm – sorry]

27 responses to “Parkinson’s Disease Dementia and FEAR

  1. Oh Julie, I know exactly what you’re talking about I’m sorry to say. It’s an awful feeling of helplessness. Listening to that very real panic in my father’s voice was awful. You, however, are my hero and I’m sure Ants’ as well. Lots of love to you.

  2. How heartbreaking at those moments, if Anthony frogets these episodes of terror then that has to be a blessing, but the constant worrying on your part has got to wear you down. I am sending my usual Big Hugs over to you Jules.

  3. HUGS for you AND Ants!
    Diana xo

  4. susanpoozan says:

    What a very difficult time for both of you, all I can send, alas, is sympathy.

    • jmgoyder says:

      Thank you for your kindness, Susan. Your brother has been an incredible strength to me via our blog relationship and his allowing me to confide him occasionally via email. One day I hope to meet your lovely family. J

  5. It’s so heartbreaking to encounter this with someone you love and to think of all those suffering alone. Your point about why you wrote this post, why you continue to share difficult times, is helpful and important. Wishing you all a calm weekend.

    • jmgoyder says:

      Thanks Paulette. When I go into the nursing home, I see so many people who look like they are nearly dead but might fidget or raise a finger or try to speak and I wonder if they are terrified and can’t express it. So haunting. I know you will understand this because of your wonderful book even though it isn’t about the same issue/situation. Jxxx

  6. Judy says:

    I was also wondering about your hands, Julie. Any relief with your condition yet? I am sorry for what you are going through with Anthony’s dementia. It is a tough road and you are handling this with every ounce of your being. Dementia is a demon that swallows a person alive and takes the family, too. Wish I could be with you right now to give you a big hug.

    • jmgoyder says:

      Hands nearly healed, heart broken – but friends like you bring the light in, Judy. Julie xxx

      • Judy says:

        Broken hearts can be reassembled – just like broken glass can create beautiful works of art. All of your pain will turn into something someday; trust me. In the meantime, nourish your body and soul in order to keep your health up. So often, our bodies fail us during these stressful times. I’m very happy to hear your hands are healing and I’m glad to be your friend. 🙂

  7. My mom was like this quite often, but since the Dr prescribed an anti anxiety pill to be taken every day, she doesn’t seem to get afraid any more, but is so confused a lot of the time.

  8. Trisha says:

    This is so heartbreaking. It also makes me angry that someone can’t come up with medications that don’t make symptoms like this worse. I hope today is a better day for you both.

  9. FlaHam says:

    Julie, I don’t have the words to decribe how proud I am of you and how your strength gives me strength. I can only imagine the love you and Ants share. But I do know that I don’t have the imagination to even come close to understanding the turmoil your’s, Ming’s and Ant’s lifes. The three of you are very special. Take care, Bill

  10. Julie, you are not spilling your guts, but educating the rest of us. I have a couple of patients with PD and I have found what you say invaluable. Thank you

  11. It’s got to be so distressing for you and for Ants… One of our members at church has a relative with PD and he is at the stage where he is verbally abusive to those closest to him.. I don’t know at what point PD is at ..that it happens but there is just so much with this disease that is heart-breaking … I’m glad he settles down soon after this fear grips him … Diane

  12. bluebee says:

    Such a lot of suffering to endure 😔

  13. It is hard not to feel the same fear and anxiety as our loved ones. It makes the suffering for us greater as we have our own suffering. I hope that Anthony may be OK by the morning.

  14. ksbeth says:

    hugs and more hugs

  15. Vicki says:

    It must be heartbreaking to hear or see this terror Anthony is experiencing.

    But worse when it gets to the stage of him (or anyone else with PD or similar) not being able to communicate this fear. You can’t be in their shoes, or imagine what they are experiencing unless you’ve been through it yourself.

    I guess the only consolation at this stage (and ‘consolation’ is a lousy word to use) is that it is over and forgotten (later) at this time. I guess the nurses (and family) really need a sixth sense to understand this very real terror that their patients/loved ones go through. And, it must be hard to know when to administer the appropriate drugs to deal with this.

    I do so hope he (and others) are checked on frequently to see if they’re awake in the night.

    It must take a very special nurse (or carer) with great powers of observation (or experience) in these situations.

    My heart goes out to you in your fear and suffering, because it’s often the family who suffer the most when their loved ones get to this stage.


  16. Reading about his fears it upsetting for me, it must be so hard for you to hear him so scared and confused

  17. It’s so heartbreaking to read posts like this one. WordPress (and Facebook) need a couple more buttons to take the place of LIKE buttons in cases like this. Sending you positive thoughts and good vibrations from San Diego.

  18. Such hard stuff. Dad’s Parkinson’s did not result in severe dementia before he died, but Mom is progressing downhill in that regard. She doesn’t seem as fearful as she is obsessed and depressed. 😦

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