Caring for & Living with Dementia: Tips & Resources

Plan Way in Advance Clearly to Reduce Family Feud like the Lee Saga

The unfolding of the Oxley Road saga since mid June 2017 has impacted each and every one of us in some manner. For me, it’s heart-breaking for me to think from PM Lee’s perspective, while he is trying to do his best for our tiny country in a turbulent era like this, he still has to deal with his family saga in public. The saga brought to our attention the importance of a trusted legal guardian who will execute our will and wishes for us in the manner that we want. Have you thought about who (the person or persons) you will appoint as your voice when you are no longer able to speak your mind? Many of us may say that I do not have much wealth or estate which will give trouble to my family upon my passing, what about before your passing, when you are no longer able to speak for yourself? Do you have someone who will advocate and execute your wishes and will for you in the manner that you wanted? None of us wish to have the Lee saga replicated in our families – conflicts arising between siblings because not everyone in the family know clearly what the incapacitated really want. Therefore, it is of paramount importance that each and every one of us (regardless of your age / health condition) has our Advance Care Plan (ACP) in place – a plan for our future health care as well as personal care matters when an unexpected event happens causing us no longer able to speak for ourselves. ACP is a plan to explore how your beliefs and values affect your future care preferences in difficult medical situations, including preferences about:

  • CPR (cardiopulmonary resuscitation)
  • Use of a ventilator
  • Tube feeding and drips
  • Comfort care.

Dementia is a disease that not only robs the person of his/her memory, but also the executive functions of his/her brain, including the person’s ability to perceive accurately, verbalise and talk, and make (informed) decision(s). In 2016, the National Neuroscience Institute (NNI) Neuroscience Clinic (Tan Tock Seng Hospital Campus) saw about a five times increase in patients with young-onset dementia (aged 65 and below) as compared to 2011. Many of these patients may still be working, some of them may still have young families. The long-term economic burdens are high for such families. In addition to increasing young onset of dementia, the world becoming a more dangerous place to live in with more disastrous events and accidents (natural and man-made) happening every now and then, you really never know when you will be unable to decide and speak for yourself. Don’t burden your loved ones with heavy responsibilities of having to second-guess what you want and at times even having to fight among themselves when they are unable to see eye-to-eye.

To relieve my family of such burdens, I have completed my Advanced Medical Directive (AMD) and my ACP. I remember my family doctor asking me “Are you sure you want to do your AMD at this young age?” when I asked her to file my AMD for me back then. I answered her with a definite Yes, as we can never to be too young to take responsibility for our own life. My goal for 2017 is to complete my Lasting Power of Attorney (LPA) and my will. Why? The administrative fee for completing Part 1 of the LPA is free until second quarter 2018, so I don’t want to miss this great opportunity! ;-P     As for my will, although I have much wealth or estate at all but having a will will make life easier for my only son upon my passing. I remember the troubles my aunt had to go through and the time she had to spend going to CPF Board (several times), finding a lawyer, appointing an affordable lawyer before we could close my late-grandmother’s CPF account and withdraw all remaining fund some 1.5 years upon my late-grandmother’s passing. She had dementia for years before her passing and she did not have any of the above-mentioned documents in place before her dementia advanced. I appeal to all of you who are reading this, while your minds are still clear and capable of rationalising and making informed decisions, to start doing the following because we never know when will be the day that we become unable to:

  • LPA
  • Will
  • AMD
  • ACP

While LPA, will and AMD are legal documents which have to be done with a lawyer/ doctor; ACP is not a legal document and can be done by yourself and shared with your loved ones, especially the one(s) who will be your voice so that every one in the family is clear about your beliefs, values, wishes and preferences, hence, reducing unnecessary guessing and conflicts among your loved ones. You can ask more than one person to be your voice. To be fair to them, you must discuss your beliefs, values, wishes and preferences with them in advance. According to Livingmatters.sg, the following are some deciding factors on who to appoint as your voice:

  • Is the person willing?
  • Does the person know your goals, preferences, values?
  • Is the person willing to follow your known care wishes as much as possible in making decisions about your care matters?
  • Is the person able to make decisions under stress?

 

I had an interesting debate with the participants from one of my recent class about ACP. As usual, there were some of us who were for ACP while others against it for a variety of reasons. Some learners misunderstood ACP for AMD. They shared that choosing comfort care and Do-Not-Resuscitate (DNR) as a violation of their religious beliefs, while others raised concerns that ‘such premature ending of our lives’ are likely to cause great distress and deprivation to our loved ones who may otherwise still be able to see us, talk to us, hold and touch us despite our being in a non-responsive state or even vegetative state. They furthered their discourse adding that since we would be in a vegetative state or non-responsive state, we probably would not be in much pain or agony, hence, we should be kept alive as long as it is possible so that our loved ones can still enjoy our presence in their lives. So it is not really about the one who is in coma or ill, is it? It’s more about them, the ones who are well and will otherwise be grieving over their loss if the former is to choose comfort care and DNR. Is this not being selfish to the one who is sick? Medical science has advanced so much that humans can be kept alive artificially with the aid of machines and tubes for quite some time. What is the meaning of life if one is so ill that needs to depend on machines and tubes to be kept alive?

And yes, Advance Care Planning is not Advanced Medical Directive, it is not about only choosing DNR and comfort care, in your ACP you can also state the otherwise according to your religious belief and personal preference, meaning not choosing DNR and comfort care. Stating and sharing your choice clearly will significantly reduce the burden on your loved ones to have to make morally difficult decision like to resuscitate or not to on your behalf when you are no longer able to voice your opinion and decision, and also reduce the need for them to have to second-guess your preference. To me, it is important to relieve our loved ones of such immense burden and pain; hence, I have done my ACP and started talking to my ACP conversations with my partner and my only son so that they are clear about my beliefs, values, wishes and preferences for my future health care and personal care matters. I strongly believe that we are the best and only person who know what we want for ourselves, and should therefore take the responsibility of exercising our choice after careful deliberation when we are still healthy and in an excellent state of mind to make the most informed decision. Both my partner and my only son now understand that having quality of life is important to me, hence my choice for comfort care and DNR. From my pragmatic point of view, choosing comfort care and DNR will also reduce unnecessary healthcare expenditure that my family will otherwise have to incur to artificially prolong my life with machines and tubes when clearly I can no longer enjoy living. I have seen families depleting their savings and some even running into debts just to prolong the life of their loved ones who were ill so that the living can still hold and touch the incapacitated.

Advanced Care Planning really is much more than comfort care and DNR. ACP is about clearly stating your definition of a meaningful life, values that are important to you, and how you will like your daily tasks to be performed in a dignified manner and person-centred manner when you are no longer capable of caring for yourself and speak for yourself, like in the case of dementia. ACP facilitates clear knowledge among your loved ones about what is important to you and therefore facilitate and enable your care givers to provide care in a manner and make care decisions that best suit you, enabling you to still feel at peace and dignified even though you can no longer speak for yourself at that point of time. Click here for a free ACP template and start planning today while you are still able to!

With my strong family history of dementia, a few years ago I developed the above-mentioned ACP template to plan it forward for myself as I may be one of those with early-onset dementia! My first ACP conversation with my son was about 3 years ago after visiting my late-grandmother who was in her advanced stage of dementia then. She was slowly losing her ability to swallow without partial choking (coughing) which was affecting her ability to eat and drink normally. I told my son that if I am to be in that state, I do not want to be fed via a feeding tube regardless; as to me eating and drinking is to be able to enjoy the taste of my food and drink in my mouth. My son at his young age then pointed out that I would not survive for a long time without food and would die if I don’t get fed via the feeding tube. I responded “Yes, and that will be a natural way to die like people in ancient society.” At the back of my mind, I had scenes of feeding my patients and performing 2-hourly turning for them when I was doing private nursing many years back, some of these patients survived in that bedridden and non-communicative state for as long as ten years or more. I do not want to burden my only son with the stress of having to juggle between his work, family and time to care for me, and the cost of care as I know that 2 or 3 cans of Ensure milk feed daily for an undefined period of time do not come cheap at all. My ACP conversations with my loved ones are still on-going as I have the luxury of time since I had started early, and I’ll need to update them as and when I make any changes to my plan. I feel that there is a lot of misunderstanding about ACP in Singapore as currently it is done only for people with terminal illness, causing the public to misunderstand the real significance and importance of ACP.

I remember once my mummy called me to complain about my late-grandfather’s refusal to shower for days (he had dementia then). With Singapore being warm and humid, naturally he started to smell unpleasant. She added that his dementia was getting worse as he was increasingly aggressive for those past few days, he would raise and show his fist to my mummy and the helper when they tried to get him to shower. My mummy is very particular about hygiene and cleanliness, while my grandfather had never smelled unpleasantly or looked untidy for as long as I had known him. He had always been well-groomed in his long-sleeved white shirt and pants, and styled his hair with Brylcreem after his shower. He even cut his hair at the Indian barber shop every fortnight until dementia robbed him of his independence. Hence, to me, it was very uncharacteristic of him to not want to shower, even with dementia. I paid them a visit with the aim of sorting this out. I told my late-grandfather that I would like to help him to take a shower and shampoo his hair. I had that conversation with him using words and hand gestures so that he could understand better. He refused by waving his hand. I went on to explain to him that it was unpleasant to smell him. I repeated my request to shower and shampoo for him, and he finally relented and agreed only to shower without any display of fist. Ah, so he did not want to shampoo his hair. Using my knowledge on how the barber would wash his hair after every hair cut, I walked to the sink in the bathroom and demonstrated to him to hold on to the two sides of the sink and bend over the sink while I shampooed his hair just like at the barber shop. And viola, he nodded his head in agreement. So I found out that on her first day of work his new helper had shampooed his hair like washing a car, allowing soap water to flow down from his head into his face, eyes, nose and mouth, and he had disliked that so much that he would show them his fist to indicate his preference not to have his hair washed since he was no longer communicative via words. This incidence showed the importance of indicating how you perform your own care task so that care givers will know how to assist you in performing them in the future in the manner that you are used to and confortable with. If my late-grandfather had completed his ACP back then, this incident on being upset with the way the helper helped him to shampoo his hair would not have happened. Hence, ACP is more than talking about death.

ACP is an organic document, a work-in-progress until you are no longer able to work on it, meaning that you can always change you mind about some of your previous decisions and change them in your ACP. You just have to ensure that you update your loved ones about it. I have made 1 revision to my ACP since I started my ACP journey in 2014. Start working on yours today! Click here for a free ACP template now.