February 26, 2017

Caring for Elderly Dementia: Communication Culture Shock

Grandma complaining to dad about her things being stolen

Caring for an elderly dementia patient is nothing like we have ever experienced before, even for mum and dad who have brought up 2 of their own kids and is now in the process of coaching my nephew and niece. With our limited exposure during her hospital stay, we initially thought that she will be her usual self, except for a few messed up names and places. Little did we realize that we have to totally change the way we communicate with her and there is no hard and fast rule on how that is to be achieved. As every dementia patient is different, we often have to use trial and error to see what works best for her and any judgement lapse in communication will lead to a very uncooperative grandma or even suicide attempts, which pushes the family to the brink of break-down. Here are some of the lessons we learnt during that first few weeks.

Logic doesn't work.

"Ati (Helper) tries to steal my dentures!"

Wrong Answer

"Why will Ati try to steal your dentures? It's not valuable and she has no use for it!"

"Who says she has no use of it! Who says! Who says! You rather believe her than believe me? She is your second mum izzit? Go go go! You don't need me! You are one family! I am useless! Let me die!

Correct Answer

"I will ask Ati why she wants to steal your denture! I will scold her and make sure it doesn't happens again!"

A few days later, she will forget that hers claims of her denture being stolen.


They cannot be disciplined
When grandma was discharged, the doctor emphasized that routine and cleanliness are very important when it comes to taking care of dementia elderly. We took the advice too literally...

The doctor advise us to let grandma wear diapers before she goes to bed in order to ensure her hygiene is taken care of in the middle of the night, just in case she cannot control her bladder. The act of putting on diapers have lead to many cat fights between grandma and the rest of the family. Dad tries to employ the methods of discipline which he will use on my nephew, such as hitting her bum bum and speaking to her sternly. Imagine the chaos in the tight constraint of a toilet as Grandma is struggling against the diaper, dad is holding on to her and smacking her bum bum, mum yelling at dad and helper trying to avoid grandma's failing arms while trying to strap the diaper onto her.

Pure chaos and unspeakable stress.

We thought that after a week or so, she will resign to her fate to wearing diapers. One week became two and two weeks became three. We than realize that what every coaxing, logic, reasoning or punishment we dish out to make her comply, she will simply forget about it after a few days later.

The idea of discipline is simple, the person being disciplined will remember the pain or pleasure as a result of their actions, and they will modify their behavior to perform pleasurable actions and avoid painful actions. The problem with a dementia patient is that they will simply forget about all the coaxing and yelling we done to her and continue to perform as usual. At the end of the day, we decided that the nightly 1 hour worth of diaper struggle is not worth the effort and we gave up. We choose to train ourselves to be more efficient in changing her soiled PJs and bed sheet whenever that happens. This simple act of giving up without all the nightly diaper drama made grandma happier and improved the mood of the family tremendously.


You have no answers for their delusions
Grand has this delusion that she has another male grandson, the son my mother always wanted but restrained by the government's two child policy, and my phantom brother. She will often come to my room and ask, where is Wen Song? Where is your brother who is sleeping in the same room as me.

I will often reply, "I am Wen Song. I have no brother!"

"Do not lie to me! You are called "Ah Wen" Did you chase him away while I am at the hospital?"

"We never have a brother! Look! This is our family photo!"

"Why did you take a photo without your brother inside? Show me a picture with his photo now!"

..fustrated...

"Look, I never have a brother! There is only me and sister!"

"Your poor brother!" She wails," What have you done to him? He is only thirteen and you all chase him out of the house! Ask him to come back or I will haunt you when I become a ghost!"

...................... and she rages on throughout the day wailing about my poor brother. Family stress goes up.

Our Solution?

We have a cousin that seldom visits grandma and visits only during Chinese New Year. He became our scrape goat whenever grandma asks about my "brother" by lying to her that our cousin is my brother. I mean, we are "brothers" in some sense right? So we told her that my "brother" lives with uncle and he visits irregularly. We had a picture on standby in our phone in which he is shown to be talking to grandma. Very often, grandma will remark, "How come I don't remember him talking to me?" But she will quietly accept the fact that my "brother" is staying with our uncle and the raging incidents died down as a result.

This is of course not the only delusion she has but it illustrates on the creativity needed to handle them.


The picture of cousin, wife and son which we used to convince that "brother" is no longer 13 years old and has moved out


They can erupt at a drop of a pin
Last weekend, we brought grandma to Sentosa. When she got back home, she searched her pocket and suddenly shouted, "Where's my purse! Who stole my purse!" Of course she did not bring out a purse in the first place. My mum did the wrong thing by trying to logic with her, "You did not bring a purse in the first place!"

We can see the signs of an impending volcanic eruption!

Luckily, Dad came to the rescue. He took out a ten dollars note from his wallet and waved it in front of Grandma. "You did not bring a purse but you brought along $10! You passed it to me for safekeeping! Here, you can have it back."

Grandma gratefully accepted the note.

This event passed peacefully, but during the earlier days, we have a volcanic eruption almost every everyday due to our inability to cope and answer to her sudden illogical outbursts. Over the months, we learn to lie, to cheat and to wrongly blame someone else, in order to keep grandma emotionally stable.

If you think doing sales is a tough job, try working as a caregiver to a dementia patient. It's much harder persuade them to behave in a certain manner than getting someone to purchase an insurance policy.

  2 comments:

  1. Thanks for sharing your experiences and possible solutions. My mum is also going through dementia and it's hard to be caught offguard to questions she may have. The hardest though is trying to hear her talk because her voice is very faint and sometimes all you hear is mumbles. We know she's trying to tell us something but we can't decipher what it is. SHe also couldn't use her hands to write so communication is really challenging.

    Sometimes, it's also good to tell stories. It doesn't matter if you tell the same stories again and again or if she's listening or not. It's giving her the attention and time which she may treasure even if she may not understand or remember everything you're telling her.

    Ultimately, patience is a real virtue that needs to be practiced when dealing with our loved ones who suffer from old age symptoms.

    Hope your mum is in good spirits.

    ReplyDelete
    Replies
    1. My grandma is very loud and vocal. I am not sure if that's a blessing or a curse. However, she is hard of hearing which explains all the shouting when we are trying to communicate with her. I agree that patience is the key when dealing with dementia patients. Thanks for your sharing!

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