My original plan for this part of the series was to call it “Guess who’s coming to dinner” as a motivation to get people talking to family and others about their estate plans including end of life decisions. However, in light of recent events in my own family, I decided to amend the title to add the “not”. The personal example is far more poignant than a general discussion.
On or about March 19, 2015 my mother suffered what was thought to be a mini stroke, but ultimately was a brain tumour. The incident resulted in a range of problems including dementia-like symptoms as well as a host of cognitive issues that were, for a time, diagnosed as stemming from a recent trauma. Literally overnight my mom went from being herself to a person I do not fully recognize and someone in need of ongoing assistance. Even worse, there have been moments when my mother did not know me.
My mother’s legal affairs are in order, which should be the case having a trusts and estates specialist for a daughter. This has definitely helped but it does not prepare you for such a terrifying event. You can completely forget whatever you thought your life was about at this point. There is no time to dwell on it and it would only drain the last remnants of energy if you tried.
To give you a little perspective on what you might face in a similar situation, here’s a summary of the last several weeks of my life. Imagine yourself in a similar situation and try to figure out how you would take care of the day to day never mind any extra load.
Day 1 (Friday) – Take mom to hospital where she remains from about 10:30 am to 5 pm. Arrange with a colleague to cover your will signing appointment with clients already en route from Toronto, complete with interpreter, in case you cannot get away from the hospital. Escape from hospital to cover your appointment only to return and find your mother tried to leave on her own because she is confused. On the way home, have your mother ask how she will get her car back from the hospital, thinking she drove herself there. This is interesting given that she gave up her car and driving three years ago.
Day 2 – Stay at home and monitor mother closely who basically sleeps all day and must be prompted for things such as food, water and toileting. Decide she cannot be left alone for more than very short periods and try to work out a plan so you can go to the office occasionally and run errands. Conclude that a respite stay at a retirement home is the best option and make emergency plans to get her admitted before you have to be in Toronto for meetings in a couple of days.
Day 3 – Stay at home most of the day and try to rest in between packing for mom’s respite stay and taking her back to the hospital for an ultrasound on her arteries. Try to figure out how many meetings and projects of your own will have to be cancelled or delayed in the next week or two (or more).
Day 4 – Regular caregiver comes in the morning to assist with showering as needed with respect to a previous injury but is not recognized by mom and almost not let in the house. Have a quiet lunch with mom and remind her again about the respite stay only to be asked if her daughter (you) knows she is going. Try very hard not to completely lose it.
Day 5 – Take train to Toronto for meetings as driving would be an extremely bad idea under the circumstances.
Day 6 – Visit mom at respite stay. She thinks it is Tuesday and you start to realize she might be measuring days based on the gap since she last saw you. Contemplate why she is wearing the same clothes as when you checked her in to respite. Reach out to local government care coordinating agency to start the tedious process of arranging services and a long term care application.
Day 7 – Take mom for blood work as ordered by hospital now that you have an actual requisition. For unknown reasons, mom was sent home from the hospital with a signed but otherwise blank requisition for blood work. Stop in a doctor’s office while mom gets blood work to request an appointment for her only to spend 10 minutes arguing with staff about why she needs the appointment even though they know about the mini stroke.
Day 8 – Initial conversation with intake person from government care agency does not go well. Take mom to GP appointment which doctor confirms was necessary. Follow up call with intake person from government agency. It does not go much better and essentially the request to start a long term application is refused, at least until more than a month later after a speciality medical appointment. Become “annoyed” as there is no such legal discretion to refuse to start the application.
Day 9 and 10 – Thank heavens it is the weekend, not that you can tell the difference anymore. Time and days just run together as you look after the house, yourself and your law practice, that you run alone, whenever you can fit time around medical appointments and total exhaustion.
Day 11 – Go to the office and try to work rather than thinking about how your mother may never be herself again and how on earth you will look after her.
Day 12 – This is Tuesday so it should be a physio appointment for mom in the morning for the tendon tear in her left shoulder but you have to take her to the hospital, again, this time for the secondary stroke clinic. You watch a continuing education webcast in the morning, grab a quick lunch, and then pick mom up from her respite stay. The appointment is not encouraging and you call the government agency back to advise them of the seriousness of the situation, which you already know. Finally the agency “hears” you and they schedule a phone interview for the LTC application on Easter Sunday of course.
Day 13 – Go to the office for meetings and try to carry on like “normal”. Contemplate whether there is such a thing as “normal” and decide it is not a fruitful exercise.
Day 14 – Go to the office for a bit before picking up mom for more lab work, a meeting and dinner out. While driving to pick up mom, the next specialty clinic calls to say she is “prioritized” for April and they can give you the 27th or 28th. That might not be so bad if it were not only April 2nd. You quickly explain the urgency of the situation including the fact that the government care agency in refusing to start a LTC application until after the specialist appointment. Miraculously, it’s no problem and you are moved up two weeks. Interestingly, your contact at the government agency had promised to call on your behalf and get the appointment prioritized but had no luck. It took you less than two minutes and a stern but polite voice.
Day 15 – Pick up mom to bring her home for the Easter weekend and move to a new respite facility the following week as time had run out at the first place. The dreaded phone interview about LTC comes and actually goes quite well other than having to revisit the entire nightmare in painful detail. Finally, someone hears you and seems to understand what is needed. You are assured that the application process has begun and an appropriate case manager will be assigned to help with services at home so mom can get out of the respite stay.
Day 16 – Peace and quiet at home with mom. Help her pack for new respite stay.
Day 17 – Check mom in to new respite facility that you initially believe offers more services relevant to her needs.
Day 18 – Go to office and try to get a little work done. Start receiving voice mail from new respite facility about unspecified issues. When you cannot connect with anyone, you finally call your mom to see how she is doing. From her perspective, all is fine. Unfortunately, you discover that the facility has not taken charge of your mom’s meds and vitamins as promised and she is trying to do things herself without so much as a dosette to aid her. Completely freak out. Drop everything and take control of med situation on interim basis and start looking for someone’s head on a shiny platter.
Day 19 – Office, errands and tidy up the house. Collapse after dinner and stare at the TV. I think it was turned on.
Day 20- Office for first part of the day and then attend at retirement home for mom’s first visit with the occupational therapist who will evaluate her physical needs in that environment. You still have not heard back about the med situation so you go down the hall and pace by the wellness coordinator’s office but she will not get off the phone despite your irate glare. Finally give up and go home as you suddenly feel like you are going to pass out.
Day 21 – Office. Get home late from the office and running errands to find voice mail on the home phone for your mother from the case manager assigned by the government care agency. Try very hard not to explode given that they know your mom is not at home currently and cannot be at home based on doctor recommendations. You are the contact on the file and they have your cell phone number.
Day 22 and 23 – Thank heavens for another weekend but you feel guilty about barely working and start to panic, again.
Day 24 – Office in the morning, I think. Pick up mom after lunch and take her to GP for follow up appointment. Connect with case manager from government care agency who asks you to tell her “your story”. At first you think this surely must be joke after all the time you have spent talking to their office but, sadly, it is not a joke. If your mother was not sitting in the room you would probably melt down and start yelling. Instead, you book an appointment for the following week.
Day 25 – Pick up mom and take her to physio in the morning. Talk to retirement home manager to discuss what happened with the med situation. No real answer is provided and somehow the person tries to blame your mother’s confusion for the problem. Interesting approach to putting someone at extreme risk given the confusion was known and the whole reason for their promise to oversee administration of meds.
Day 26 – Take mom to geriatric specialist clinic for 10 am. Appointment lasts until 12:30 and you take her to her favourite fish and chip restaurant for lunch afterwards. The appointment is difficult. You are advised by the specialist that the mini stroke was too mild to cause the severe problems and they don’t want to call it dementia either. The most reasonable alternative is emotional trauma and the doctor asks what could have happened recently. You tell them about your mother’s horrific problems getting assistance for her injuries after a fall last September which culminated in her bering verbally and physically assaulted in the home by a care worker arranged by the government agency responsible for such things. The doctor says that could do it. Now you have to reconsider your approach to dealing with this agency for additional services and the LTC application. You decide to go back to contacting the agency’s lawyers instead.
Day 27 and 28 – Office and try to cancel mom’s meeting with the case manager. Interestingly, when the case manager learns your mother has suffered significant cognitive changes due to emotional trauma she offers to assess her for the purpose of making recommendations for curative services in the community. You bite your tongue and tell her “no thanks”. She also tries to insist on doing an evaluation to deliver services at the retirement home even though it was made clear previously that no such services are needed there.
Day 29- 30 – Another weekend.
Day 31 – Finally get the snow tires off your car at nearly the end of April.
Day 32 – It’s Tuesday so this means another physio appointment for your mother.
Day 33-35 – I cannot believe it! Three days in the office with no medical or other appointments.
Day 36 and 37 – The weekend.
Day 38 – Office.
Day 39 – Back to phsyio again and have them assess your mother’s right arm which is now bothering her more than the left one which was confirmed to have the full depth tear of the tendon. Find out that the right arm might have an undiagnosed injury and call doctor’s office for appointment to get requisition.
Day 40 – Office.
Day 41 – Meet with personal injury lawyer.
Day 42 – Take mom to GP to get requisition for tests on her right arm.
Day 43 and 44 – The weekend and time to plan for mom coming home from respite for trial period.
Day 45 – Office.
Day 46 – Mom to physio. Drop her back to respite stay, grab lunch and go to the doctor for yourself. Finally confront your exhaustion and get requisition for blood work. You are the only caregiver for your mother and yourself. Unfortunately, when your mother fell last fall you were still trying to recover from a total radical hysterectomy needed because you might have late stage ovarian cancer. Thankfully you did not have cancer but were so sick before surgery the recovery process was crushing and not complete when you mom’s health started to falter never mind the mini stroke.
Day 47 – Send stern letter to legal counsel for government care agency.
Day 48 – Mom home for trial stay.
Day 49 – Work from home, sort of, so you can monitor installation of LifeLine service for mom.
Day 50 and 51 – Quick scramble to pull together materials for publishing commitment.
Day 52 – In home care services are supposed to start but the person calls at 9:15 as you are trying to get out the door and you discover the regular person is on holiday. The replacement is unknown to your mother and wants to come early but after you have left. You check with your mother and she refuses to have the person. Perfect. You thank the person and say you will call the office to sort things out. Now you consider whether you can leave the house for a few hours to go to the office. You take a leap of faith and go to the office but cannot concentrate worrying all day about your mother being alone so you give up at 3 pm, go for groceries and head home to work from there.
Day 53 – It’s Tuesday again and time for more physio for mom. After lunch, you sit down to write this blog to explain what it is really like to have a sudden and life altering health event in a family. You wonder if anyone will actually listen or maybe you should have just worked instead.
Day 54 and beyond – Appointments, appointments, appointments. It feels like you spend more time thinking about working than actually doing it.
I have practiced law for nearly 20 years and consistently preached preparedness to all who would listen and even those who would not. Having your legal and financial affairs in order definitely helps but it is only one part of the overall puzzle. You need to know and understand what a family wants in terms of care and other assistance. Also, you need to personally be able to jump up and take control of a terrible situation possibly at a very difficult time in your own life.
Estate planning is not just about the person making a Will or powers of attorney. It is also about the people who will have to carry out instructions and make time available for appointments. If your family member is confused and cannot provide all relevant information themselves, or even go out alone, somebody has to help. In my family, I’m all there is for my mother and there is no one for me. You can hope all you want this will never happen but it does for some people. The last thing you need on top of it all when you are faced with a loved one who may never be themselves again is having outstanding legal or financial issues.
Do not wait to do proper estate planning including open and honest discussions with all involved. People need to consider how their own lives may be impacted and plan accordingly for leave from work or other options as well as sharing the load. If you wait until the day you are confronted by the possibility of mom never coming to dinner again, as the person she used to be or at all, the strain can set off a round of problems that are unhelpful to the situation.
Join me again soon for the final instalment in this series.