Archive for July, 2011
Mariam got hit. Extreme anger is part of the psychotic episode mom goes through. She becomes very agitated and behaves in a manner that is not consistent with her “normal” personality. During this time, she would call names, yell, shout and get so irritated that at times would even hit the person. Now, dad has gone through this many times and gotten hit few times. But it was a first for Mariam. She called me at work, and I told her to stop her hand.
Now this was not a random decision of self defense, the thing is that when a person dominates (not harshly but politely and sternly), she tends to calm down. Because during this events her anxiety level is extremely high and if she is let to dominate because of her yelling and all, it creates chaos which makes the situation way worse. Everyone gathering around her, to see whats happening doesn’t help either. This is best handled by couple of people, of which one dominates.
The couple of days have been somewhat okay. She has been missing and reminiscing about better days. She missed her dad, recalled Asfu and our life in Sultangunj. Not all is lot, I guess.. not yet.
Once in a golden hour
I cast to earth a seed.
Up there came a flower,
The people said, a weed.
To and fro they went
Thro’ my garden bower,
And muttering discontent
Cursed me and my flower.
Then it grew so tall
It wore a crown of light,
But thieves from o’er the wall
Stole the seed by night.
Sow’d it far and wide
By every town and tower,
Till all the people cried,
“Splendid is the flower!”
Read my little fable:
He that runs may read.
Most can raise the flowers now,
For all have got the seed.
And some are pretty enough,
And some are poor indeed;
And now again the people
Call it but a weed.
By : Alfred Lord Tennyson
Mom recites the first two lines of this poem often. It’s quite something to forget the language but remember a couplet in it.
Mohammad Rafi was an Indian singer, who sang many many songs for the movies and all. He is still thought to be the best singer India has ever produced for his voice. He has since passed away but keeps on helping us out. I have tried this few time and it has worked. Every time I feel the anxiety attack coming, I play some old Mohammad Rafi songs, and mom calms down. The general hospital in Baghdad back in 1000 AD used music as a means of calming patients down.
Mom had visitors yesterday, her younger sister and her husband, and her younger brother came to visit her from San Diego. They had a first hand experience of dementia. The psychotic episodes usually happen in the early part of the day when I am at work. They were all visiting her then and saw the anger and anxiety. My uncle who visited is her favorite brother. And being the favorite always helps. He was able to feed her lunch when she refused to eat it by herself or anyone else.
All these episodes everyday take a big toll on dad. He loses it at times too. But its okay, I and Mariam understand that it is the toughest on him. Being the primary care giver is extremely difficult. And tougher is to keep a positive attitude. People visiting and calling, small breaks like going to the movies help, so do walks but it’s still tough. There is a concept in Islam called ” Ar- Rida” . This loosely means to be content with your condition. To not complain or feel dejected because of hardship but take it as this has been ordained by Allah. And though we might not see the good in it, understand that the Mercy of Allah is everlasting and Allah alone knows whats best for you. Ar- Rida is said to be the key to happiness irrespective of your situation.
Easier said than done.. right… but can it not be done?
Every passing day now shows something new. The deterioration is becoming faster I think. And it all takes a toll. This morning I got a message on phone from Mariam while at work. It said ” and the day has started, crying, anxiety, agitation , anger”. I had a long day at work today, just another busy day. Mom was better and eating dinner by the time I came home.
Mom went for a walk with dad later, just a bit before maghrib prayers. When she came back in I went to help her out in coming in the house… I hugged her and it was a moment of silence and she started praying for me and crying while praying.. I couldn’t hold it in today. I couldn’t be the strong guy today.
Remember how I said in the last post, mom’s last psychotic attack was not triggered by agitation and anger, well this one was. It involved anger, yelling, calling names and more. She has gotten very sensitive to pain. An example would be that a small pinch, or gastric pain for her would be too much. She would ask us to remove the pain. And since we can’t “physically” remove the pain, that makes her angry and starts to feel that we are not doing anything for her.
The process that we have developed in handling these situations depends on whether I am home or not. If this happens when I am not there, then dad and Mariam would basically try to calm her down by talking to her smoothly and not getting angered themselves. This is not easy especially for my father. He is the primary care giver whose job all day and night is to take care of mom and he does a darn good job of it. Now if I am home, what I do is play good cop bad cop. I talk to her sternly but calmly to do it and her anger changes direction and moves towards me, while then she sees dad as the good guy at that point. Which means she would take the medicine from him and eat the food he brings. Sometimes it works wonders other times, we just wait for the medication to take effect and it all to pass.
Mornings are always the worst. She wakes up and complains about massive headache. This is multiplied by the fact that she took sleep medication the night before and might still be under its effect. Another theory, which is the underlying cause of her disease, is that she has “silent strokes” . You can read about it more here. Microscopic strokes are usually silent strokes.
If any of the readers have dealt with Vascular Dementia patients and have some ideas on how to handle the episodes, please do leave comments. I am sure we can learn something from your experience. Also, please do forward this blog to your friends., any ideas are welcome. We are for sure running out of them.
Dementia patients go through psychotic attacks, and yesterday my mom had one. It’s not always agitated or anger based but usually is. Hers was triggered by her missing her daughter. She cried like a baby for almost 4 hours until she fell asleep. Mariam fed her during this time too! I have idea how she pulled that off. During this “phase” its extremely hard to communicate to her. All you can do is, try to be near her and wait for her to get tired or the medicine to start working which by the way does not always do what its supposed to do.
Mom does not understand that talking on phone is not the same thing as the person visiting. She kept on asking for my sister who was already in her home some 2000 miles away. She missed her dearly. For the few days, when she was here, mom hardly had any episodes. It was a calm time. One day after she leaves, she got another attack. I am usually able to calm her down when I call from work. Yesterday, she wouldn’t talk to me on phone.
By the time I came home, the storm had passed. Dad was all praises from Mariam, for the help and support she provides. He was emotional. We prayed Marghrib (Sunset prayer) and mom prayed with us. After words she just sat on the chair talking to me and praying for everyone like old times, sent blessings to her children especially to her daughter.
Much of the chatter is gone with the kids. My sister returned home today and mom has been missing her a lot. It was a different day today, she laughed, was in great mood all day and seemed to be at ease most of the time. Its a first in a long time and very welcome one. Dad felt at ease and I think a bit too optimistic. I had to back track his optimism, it hurts more when you expect more. We were almost gonna take her to the park today but it was too hot. Maybe tomorrow, she can go with on one of his walks in the neighborhood.
We don’t really know what made the difference today, but a friend sent out this article about dementia patients on BBC. It says that agitation, which a common symptom of dementia might be calmed by pain medication. Mom takes some. You can read the article here .
I really appreciate the support that I get from a lot of you. I want to make sure that we all understand the purpose of this blog. The purpose is that I document what my mother is going through for others to compare and to look for clues if they have some one who might be suffering from this disease. There is no cure for it yet, the only way we can know more about it is by case studies and sharing them. The other reason is for my friends and relatives to be in tune with whats going on, they are spread all over the world but that does not mean they are not close …. It is their right.
When we were leaving my parents house in Patna, India to go to the airport for our journey back to US, it was a tough goodbye. Relatives, friends, neighbors, the apartment workers everyone was there to say good-bye to their “baji” or “bhabi” or madam what ever they called my mother. It was a scene out a tragic Indian movie, everyone was crying and trying to touch her or kiss her hands, just somehow trying to keep a part of her with them. Somehow mom knew this might just be the last time she was seeing them too. She kept asking me give money as a gift to everyone who came.
Mom is talking to my sister who is leaving tomorrow after visiting with her family last few days. She called my sister to her room to say good byes as they have to leave super early for the airport . Once again, she knows, she understands that her only daughter is leaving tomorrow. I walked out of the room. I am not good with goodbyes. I hate them, to tell you the truth. Mariam is in there with them. I am sure she is not smiling either. She is too soft, her heart melts fast.
Moments like these are bitter-sweet. They are sad, but give hope.. Mom can still understand somethings… sometimes.