ACP, LPA, AMD and the last Will and Testament

This post is helpful in sorting out various legal situations people face when dealing with care. Please check if they are applicable in your area.

Dementia, Caregiving and Life in General

This post is about death, disability, disease and decision-making.

There comes a time when someone is ill or dying, and decisions have to be made about treatment and whether or not to prolong life, or suffering, as the case may be. Who makes the decisions? When? How? Singaporean not only love acronyms, they like things neat and orderly. And so several laws and programs have been put in place to help people do things properly.

Unfortunately, the introduction of these new programs have been muddled up with rules, details and legal jargon. Let me try to demystify it a bit…

Last will and testament

This is obvious. This is a legal document determining how to distribute one’s worldly possessions upon death.

Example – Aunty Helen died, and in her last will and testament, left her house to her son, her jewellery to her daughter, her bank account to her chauffeur and…

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Caregivers: Crisis Situations–Work, Employment Insurance, & Housing.

The call came midday.  My grandson, Cody, had been in a serious motor vehicle accident.  He had a broken back among other injuries and was in critical condition.

In the harrowing days that followed, I was reminded that as well as being ever present for the critical patient, the caregiver has a life of their own which must be managed even while giving much of their energy to the support of the person in crisis.

What to do about Work, and time missed due to caregiving?

The social worker at the hospital advised Bev to apply for Compassionate Care E.I.  This Employment insurance benefit is available to people who will be unable to work for a period of time while they are providing support for a critically ill loved one.  The benefit, for those who qualify, can be paid for up to 26 weeks.  To qualify you will need:

  1. A doctor’s certificate.  The form can be downloaded from the E.I. website, and we simply took the form to the ICU where the doctor signed it for us.
  2. An ROE from your human resource or payroll department.
  3. An online application.  We learned that VGH has a computer room available to patients and their families.  As well as providing computers, the centre facilitates faxes, printing and copying forms.
  4. My daughter took the forms to a local Services Canada office and left the Doctor’s certificates for reference with her file. Remember to have these forms photocopied so that you have copies in case the official ones go astray.
  5. To learn more or start your own application go to:  https://www.canada.ca/en/services/benefits/ei/ei-compassionate.html

There was also the travel factor; Bev lived about 300 miles from VGH.  What options are available to families who live long distances from the hospital?

  1. Staying with a friend or relative who lives in the area:  Fortunately, I live less than 30 miles from the facility so Bev could stay with me.  And the transit system is excellent. Although it took an hour and a half by bus and sky train to get within two blocks of the hospital, the stress of driving in and the horrific cost of hospital parking made the transit option preferable.
  2.  Ronald MacDonald Houses are highly lauded if available in the area of the hospital, and if your child qualifies.  RMHC houses have an age limit of 21 years in some cases, and 18 years and under in others, in which case Cody being 24 years, his mom would not have qualified for a room.  These accommodations have rules and small costs associated with them, and a doctor’s certificate is necessary if you need to stay overnight.  See more at the website of the Ronald MacDonald House in your area.  Costs are minimal and no one is excluded for an inability to pay.
  3. Check housing available in the various universities.  While they may not be particularly close to the hospitals, they all have excellent bus service to and from the downtown area.  Some universities have very reasonable dorm rates in the summer when most students are off campus.

There are many other concerns, of course.  But hopefully the info I’ve provided on these two issues is helpful.

As for Cody?  He has a strong spirit and a great deal of loving support as well as a wonderful attitude of gratitude.  He is healing far better than anticipated.

 

Stress: A Caregivers Brief Guide to De-Stressing.

Monique Lanoix writes that caregivers face serious issues including loss of work, poor health and poverty, while at the same time performing a much-needed civic duty that saves the government millions in health-care funding. The caregiving act also allows the recipient of care to remain at home, which is preferred.

In other words, everyone seems to benefit but the caregiver.  While most people decide to be care givers and are happy to do so, the stress factors still exist.

Here are five ways to cope with, if not reduce the stress associated with caregiving.

  1. Check your posture. “Really?”  you say.  “Honestly, I’d expected something better than that!” But the reality is, correct posture with your shoulders back and down, your chest up and your head up, allow all of your organs to sit in proper alignment and therefore function efficiently.  Proper posture also opens up your lungs, allowing for better and healthier circulation, intake of air and circulation of oxygen through your system.

  1. Breathing deeply in and holding that breath, and then slowly breathing out again, is one of the best ways to relax and to send the message to your own body that you still know it’s there.  It is so easy to ignore our own bodies when we’re feeling exhausted from the challenges of giving constant care to someone else.  But you need this body, and you need it to be well.  So bathe your lungs in oxygen.

  1. Indulge in Music: Music is one of the greatest de-stressors of all time.  If you like to sing, then hum or sing while you load the dishwasher, change the laundry loads, cook a meal or take a shower.  Likewise, if you just like to listen, turn on the tunes and indulge in a little “kitchen dancing” while you prepare meals, do dishes, or prepare meds.  While the care-recipient is taking a nap, lie down in a separate room, if possible, and snooze with a soothing song or sonata playing in the background.  Focus on the music.  You’ll find your mood uplifted.

  1. Keep a Journal. As a Caregiver you may have plenty of complaints, stresses, concerns and just plain worries. Journalling is a neutral outlet that allows you to vent ad infinitum.  For some people, just writing down the flood of negative thoughts and emotions allows for more positive energy to re-enter the body and mind.  Once you see your rants on the page, you are more likely to be able deal with them objectively.

  1. Maintain a healthy diet: If you are what you eat, then surely this is the time to indulge in foods that protect your health and energize your cells.  Keep up with daily vitamins, especially C and D.  Eat organic or at least fresh, raw vegetables.  Try setting up a plate of cucumber, zucchini and carrot sticks, grape tomatoes, broccoli florets and apple slices early in the day and keep it in the forefront of the fridge.

For meal prep remember that lightly steamed vegetables or salad are fresh, loaded with vitamins and have the advantage of being much quicker to make, serve and eat.     Yogurt with its probiotics will help with digestive tract issues like indigestion, gas, and constipation which can occur when you must sit a lot, as many caretakers must.

Like many of your cohorts, you are probably primarily responsible for those in your care.  So keep in mind that it is as vital to them as it is to you, that you keep yourself healthy and in a good frame of mind.

For more on Monique Lanoix’s article see:

https://impactethics.ca/2014/01/14/family-caregivers-in-canada-prognosis-poor/

Compassionate Care Givers: The Precious Gift of Time.

Being a caregiver is demanding.  Sometimes overwhelming. And sometimes?  Extremely gratifying.

It can be an emotional roller coaster.  For instance, one woman described it as being in “Dementia Prison” with her mother. Another, who cared for a husband whose condition demanded 24 hour care told me, “but I love him so much.”

Many people who are dealing with their loved one’s condition alone often feel drained and exhausted. Being constantly tired and depleted of positive energy can lead to chronic depression.

So, you may ask, what are the positive aspects of this care giving journey?

Consider this: This week, my friend’s only child, her thirty-four year old son, Shaun, died suddenly and unexpectedly.

He had a stellar career in Ottawa, working with the Prime Minister and cabinet members.  His portfolios included the Yukon and the three territories.  People who knew and worked with him describe him as a gentle, incredibly knowledgeable, go-to guy if you had questions, or needed assistance.

At this young age, he had run campaigns for MPs and provided research for political speech makers.  He made and kept his friends: those from university, from campaigning, from his work in Ottawa and from his home in Vancouver, on the West Coast.

This brilliant, considerate and loving young man is no longer with us. Because his passing was completely unanticipated, there was no time to say goodbye, to make a final connection, to reach out to him, or for him to reach out to others.  In an instant he was gone, and with him, that cherished light in his mother’s life.

Yes, care giving is demanding; sometimes depressing, sometimes exasperating while at other times hopeful and surprisingly rewarding. But above all, attending to our loved ones, and on occasion our not-so-loved-ones, affords us the time to reflect, and upon reflection the possibility of re-configuring our relationships.

The gift of time is precious. It allows us to say goodbye. It is an opportunity for closure for both ourselves and our loved ones.

Advocating For Your Loved One: Eight Practical Suggestions.

How often have you noticed something that needs to be addressed in order for your loved one to have the best care? Probably almost as often you have felt mentally, emotionally and physically exhausted.   

The key to dealing with these situations is to be prepared, to be as informed as possible. Armed with the relevant information you will feel empowered and confident. 

These eight practical suggestions will ensure quick access to the records you need to be effective in your dealings with medical professionals and bureaucrats when issues arise.

1.  At every appointment, take notes and always date them.   

  • Be sure to include a list of all participants. At meetings with medical practitioners ensure that you record key terminology and associated terms, and any recommendations that are made. This applies not only to specific medical concerns but also to diagnosis and treatment options.  I kept these notes in one notebook making it easy for me to quickly locate relevant information. This helps immensely if you should decide to question a medical decision.

 2. Get copies.  

Always insist that you receive any report that is generated concerning your patient.  I found that doctors were usually willing to have an assistant photocopy documents for me. I even received ECG printouts when I asked for them. 

3.  In the Province of British Columbia you have the right to a printout of any lab test results requested by your doctor.  However you must tell them you want a copy when you submit the requisition to the lab. The lab will then either give you a card with the internet address where you can access the results, or if you prefer, ask to have them mailed to you.

 4.  Ask the pharmacists to photocopy all original prescription requests from your doctor. This allows you to compare the dosages indicated on bottles or vials to what the doctor actually prescribed.  It also enables you to check prescriptions against previous ones.  On rare occasions this additional check helped me to determine, with a pharmacist’s assistance, that the prescription filled was either inaccurate or inadequate.  I found that Costco pharmacy was always willing to go this extra distance to ensure my peace of mind.

 5.  Don’t back down. If you have gathered all the information and know that you are right, don’t yield. Always be calm and courteous, but insistent.  Do your research. If you are lucky enough to have a nurse or doctor in the family or in your circle of friends, discuss the issues with them.  They may put your mind at ease with the medical advice you have been given, or they may indicate possible strategies for intervention.

6.    Phone calls to professionals are most effective when you maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands!  Use phrases like “it seems that this is the case…”, or “is it not the case…?”, or “could you please explain to me…?”, or “it seems to me…” as opposed to “you made a mistake…”, or “you lied…”.

7.   In the case of bureaucratic delays or rejections, where time is crucial to ensuring the well-being and best care of your patient, state that if necessary you are willing, while be it reluctantly,  to go to wider public resources: the local newspaper or TV station.

When writing a letter always copy to your MP or MLA and state that you are doing so.  Assert and reassert the facts.   When you have the evidence to back up your position, you need never back down.

8.  You are your loved one’s lifeline.  Never forget that.  One of a caregiver’s first and foremost endeavour is to advocate for those who are under their care.

Margaret Jean.

Are You A Caregiver? How Do You Know?

In North America it is estimated that the over 65 population will double to 70 million by 2030. In the US alone, the home care provided by family members or other unpaid members of the general public (friends, neighbours) in 2007 was already worth an estimated 370 billion dollars.

So, who is a caregiver?  Are you a caregiver?

According to the American Family Caregiver Alliance you are a caregiver if you provide these services:

  • Buy groceries, cooks, cleans house or does laundry for someone who needs special help doing these things? (This sounds like what I did for every husband I ever had).

  • Help a family member get dressed, take a shower and take medicine?

  • Help with transferring someone in and out of bed, helps with physical therapy, injections, feeding tubes or other medical procedures?

  • Make medical appointments and drives to the doctor and drugstore?

  • Talks with the doctors, care managers and others to understand what needs to be done?

  • Spend time at work handling a care-giving (patient) crisis or making plans to help a family member who is sick?

  • Is the designated “on-call” family member for problems?

Sadly, you are not unique if while performing these types of services, you juggle work and family.  Some of you may find yourselves in the “sandwich” generation, that is, taking care of parents and children at the same time.

All of these factors can be further exacerbated by the type of illness the patient suffers, by availability of facilities and professionals, by cultural approaches and also by livng a long distance away from the person who requires your care.

Want to read more about caregiving?  To find some examples of complaints and kudos and good tips about caregiving and possible resources?  Then go to:

https://www.caregiver.org/caregiving

I hope this helps!

Yours truly,

Margaret Jean.

I Have Alzheimer’s: Michael Ellenbogen

Many of us are caregivers to a person with Alzheimer’s.  But we can never really know what it’s like to BE the person with Alzheimer’s.

To get a glimpse into the mind of a person suffering this condition is a rare insight.

This article was written by a friend for Michael Ellenbogen.  A victim of early onset Alzheimer’s, Ellenbogen speaks out about his illness and how it has changed his life.

So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass, have become frustrating and difficult for me to perform.

I leave things lying around the house – not to be difficult, but because I have forgotten where they go, and I am also afraid that if they do get put away I will not remember where they were put.

I was once a very sociable person, but now I go to a happy affair only to be tortured by the noise and surrounding conversations because I am overwhelmed by the stimulus of sight and sound.

I don’t understand what people are saying; the words run together and they may as well be speaking a foreign language.

I can no longer write or speak like I used to. What you are reading now has been written by a friend of mine who helps me put my words onto paper.

My friends have become distant, and even when in their presence they will address my wife. Even when enquiring after me they rarely direct their questions to me.

This is heart-breaking for me, the fact that they feel they can no longer talk to me really saddens me.

To read the complete article, go to:

http://www.everydayhealth.com/columns/my-health-story/early-onset-alzheimers-disease-michaels-story/

 

This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.