Be Nice

I received this text one afternoon from a friend who was visiting at the hospital:

“His diapers full of shit and no one attend to him! Am I allowed to kick up a big fuss?”

I lay back and thought about getting back to my nap. But my mind buzzed and so I texted back, “Be nice.”

From what I’ve read, it is the same the world over. Quality of care depends on two factors – are there enough staff members around, and do they care enough. If the hospital is understaffed, no point being nasty. Bring it to their attention, and help them out. It will be appreciated.

If it is a case of inconsiderate neglect, no threats will ensure your relative gets better care the next time around, especially if you’re not there all the time to monitor. You want to encourage cooperation, not incite passive aggression.

I first heard the phrase from my boss… as in “There’s been a complaint about you. Be nice.” End of conversation. There was no room for my explanation, and no further discussion. It rankled initially, until I understood.

What mattered was not “being right”, it was “being nice”.

A very nice Ozzie fruit, don’t you think?

Old Age or Dementia?

When I first noticed Mom’s personality changes a few years back, I wondered if there was more to it than just a mellowing with age. There was plenty of news about dementia and its early symptoms, which put me on the alert. In spite of my suspicions, Mom was not officially diagnosed with dementia until last year, when it had become painfully obvious to me and others that her abilities had markedly declined.

Generally speaking, Mom’s symptoms were¬†a change of personality from something else to simple and cheerful. From being particular, she became easygoing. Though at times, she would anxiously call about things being missing, and one of us would have to go and find whatever has been misplaced. It also seemed conversations became much simplified and complex ideas could not be understood. So there was memory loss, personality change and also a loss in ability to manage complex functions.

So for the few years while my suspicion flared off and on, Mom was managing on her own, and in retrospect we might have done better. Mom’s dementia is a combination of Alzheimer’s and vascular dementia, and by the time she was diagnosed, the brain scan showed multiple old strokes. Such strokes might have been reduced had Mom taken her medication for hypertension and high cholesterol regularly. In fact now, one year after her diagnosis, she seems to have stabilised (touch wood) and I attribute this to having regular meals, regular medication and less anxiety overall.

I have an acquaintance whose father had been getting more forgetful for the past 10 years. He would typically repeat his questions, forget where he was and what he had been doing. Nonetheless, the family just put it down to old age and did not seek treatment, believing nothing could be done. Lately, he started having difficulty walking and adding two and two, and so finally a brain scan was done. This showed a shrunken brain with multiple old strokes all over.

I know it is said there is no cure for Alzheimer’s dementia. But Alzheimer’s is not the only type of dementia there is. Sometimes similar symptoms are caused by depression, thyroid problems or other issues in the brain such as strokes. Some of these can be treated and managed.

A year ago, I had believed Mom could only go downhill inexorably. Time has proven me wrong, and I am grateful for all the people around me who have rallied to help me look after Mom.

My point is – if someone is showing early symptoms of dementia, have it looked into. It might be treatable.


Walking with Dementia

It has been noted that persons with dementia show difficulty walking, either slowing down or losing their balance. Many end up with a sort of “dementia shuffle”, a hesitant leaning forward shuffling step. It has also been said that persons with dementia cannot both talk and walk at the same time. So for example, when she is walking to the kitchen and you ask a question, she has to stop walking in order to process the question and answer you.

Mom has been walking quite well, despite the stroke she suffered last year. She walks well enough that a physiotherapist who saw her weeks after the stroke could not tell which side the stroke happened. Nonetheless, we have grown accustomed to her slower speed of doing things, and take as “normal” today what would have been considered “abysmally slow” in the past.

What I’ve also noticed is an uncertainty about walking that I find difficult to explain. If Mom starts leaning and holding on to someone or something to walk, she suddenly seems to lose her ability to walk alone. Or she forgets that she can walk well.

For example, if I gave my arm to Mom to help her down some steps, when we reach the bottom of the steps, she keeps leaning onto my arm as though she would not be able to stand or walk without it. But if I say, no need to hold on now, she can stand straight and walk well. Sometimes, when we enter a lift, she makes for the wall so that she can lean or hold on. Yet, when I say, no need, you’ll be alright – she can immediately recover, stand and turn well without help.

I think there are two reasons for Mom’s difficulty with walking and wanting to reach out for a crutch. The first is probably physical and due to deconditioning and weakness in the legs. I will have to take her for strengthening walks and exercises. The second reason is probably dementia itself, affecting how well her brain is able to control her legs. Most of us walk without thinking about it. Mom has to remember to keep her balance and walk. That’s why she is okay after I remind her that she can, but without this external reminder, she looks for some place to lean.