Time Marches On

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My Dad and I sometime in the 80’s

UPDATE

On December 24, 2015 my Mother was moved from the South Calgary Hospital to CareWest Colonel Belcher Long Term Care facility and was reunited with her husband. In May 2016 my Father passed away.  While we will miss our Father forever the ONLY thing that made those last few months bearable was the fact that my parents were together. They lived in different wings of the building but my Mom was able to zoom to my Fathers room in her scooter anytime she wanted day or night.  I can say without a doubt in my mind that in the end,  for my Father, quality of life was holding his wife’s hand and having her by his side. They even had a few laughs.

I have been remiss in updating this blog. There is so much more to write about in regards to seniors care and personal dignity.  Since going through these various ‘episodes’ with my parents I have found it difficult to find the time and concentration to put ‘pen to paper’ so to speak.

In the meantime the crisis with seniors care and housing continues to tear families apart, destroy hope and impact the most vulnerable among us.  This week an almost identical situation hit the news about a couple in British Columbia.  http://www.cbc.ca/news/canada/british-columbia/seniors-care-home-surrey-1.3735013    I encourage people to share the story about this couple in BC far and wide.  It just might help.

 

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Opinion: Who Cares? Nursing Associates and safe staffing. Jane Ball

clahrcwessexnews

IMG_0190 Jane Ball is a Principal Research Fellow based in the School of Health Sciences at the University of Southampton

We have a shortage of registered nurses, hence nursing is once again on the occupational shortage list. With insufficient ‘home-grown’ registered nurses available, Trusts have had to resort to other measures: use bank and agency, recruit ‘ready-made’ RNs from other countries, run services with a high vacancy rate and try and ‘stretch’ the existing resource to cover the gaps.

The solutions are far from perfect – each bearing a financial cost and increasing pressure on existing staff, to manage temporary staff, accommodate staff from other countries, or bear the brunt of staffing shortages themselves. Increased pressure leads to sickness, absence, higher burnout, and staff leaving. Leading to more vacancies and more pressure. A downward spiral fuelled by too few RNs.

In December 2015, Health Education England published the national workforce investment…

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THE RIGHT KIND OF ATTENTION

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In my previous post I shared the update that after 4 months of being stuck living in the South Calgary Hospital in Calgary my Mother was finally transferred to Carewest Colonel Belcher, the same Long Term Care facility my Father lives in.  We got the call from Alberta Health Services and within 48 hours she was relocated.  This was such  welcome news for my parents and our family.  The move happened 2 days before Christmas to boot. Hurrah!

At that time I wrote about how going public, sharing stories and being a vocal advocate was a good tactic for affecting change.  In our case this blog brought my Mother’s situation to the attention of Alberta Health Services and Alberta Health management.  The AHS staff that reached out to us were very clear that they could only work within policy and they were equally clear that some crucial steps had been missed in assessing my Mother’s priority level for a compassionate transfer to be with her ailing husband.  Though it still seemed to drag on for a long time, once the higher level folks in AHS got involved, a plan to get my Mother out of the hospital finally started in earnest.  In particular a Transition Services Manager stepped in and took a leadership role. Her combination of genuine concern and empathy for and about my Mother’s situation, her understanding of the intent and application of current health care policy and authority to direct the local hospital staff made all the difference in the world.  Furthermore the same Transition Services Manager took the time to interview me about our experiences in dealing with the health care system with an eye to identifying knowledge gaps and training needs for staff. In our particular case speaking up and attracting attention was helpful in getting my Mother into a facility that was more able to address her care needs and in reuniting my parents.

This past weekend I received an email from a family in Edmonton who has been going thru a protracted, stressful and extremely challenging breakdown in communications with multiple entities in the Alberta Health Care system including: a not for profit charity that operates a Long Term Care facility, a Community Hospital, Alberta Health and Alberta Health Services. The family feels that their actions as advocates on behalf of their daughter/sister Rebecca has resulted in a negative backlash by the Long Term Care provider. Rebecca was sent to the hospital and refused re-admission to the LTC facility.  The family’s appeals about the seemingly punitive retaliation has fallen on deaf ears.

Rebecca is 51 years old. She has complex health care needs. For most of her life she lived with her parents who were her primary care givers. Inevitably her elderly parents were faced with the reality that they could not sustain their care giving role for ever. Rebecca moved into a long term care facility where she resided for 5 years. With good intentions Rebecca’s sisters flagged concerns they had about the quality of care Rebecca was receiving. Instead of responding as ‘partners in the care plan,’ which is how most health care providers describe the relationship with the patients loved ones, the family asserts that Rebecca was expelled from the facility for no good reason and permanently refused re-entry. Rebecca has been living in an Edmonton hospital since February 2015.

Public Interest Alberta wrote about Rebecca in March 2015. Please take a moment to read their brief article and in particular listen to the voice-mail message informing the family that Rebecca has been sent to the hospital. Woman Evicted From Care Home due to family raising public concerns.

Regardless of the complexities of Rebecca’s health care needs and/or the interactions between the facility and her family as advocates, what does this style of ‘eviction notice’ say about the state of health care for the most vulnerable in the province of Alberta? That hackneyed refrain of ‘patient centred care’ rings particularly hollow in this case.

For the past 11 month’s Rebecca has been stuck living in the hospital while her family try’s to no avail to have her moved back into the long term care facility she called home for 5 years. Most recently the hospital has reassessed Rebecca and have down graded her care need requirements from long term care to assisted living level 4. The family disagrees with this change in status and have grave concerns that this is a convenient way for the hospital to transfer the ‘problem’ of what to do with Rebecca to another facility. In the words of the family “Grey Nuns plans to evict R to an unsuitable SL4 facility, geared to more independent residents. For example, they have never cared for a Bipap patient before, let alone a complex care one, there is no registered nurse working the floor, there is only 1 trained nursing staffer for 150 residents at night (an LPN), there is only 1 AHS respiratory therapist for ALL Supportive Living sites and group homes so good luck trying to access Respiratory services, and there is no front desk supervision at night or weekends to monitor if she wanders…Many things seem manipulated about the situation, most notably the assessment process that barred family input and ignored previous health history and the inaccurate info on the housing form used to match residents to site. But even the transfer process limited housing choice to one site – with Grey Nuns using high pressure tactics to try to force acceptance. According to hospital records obtained at great effort, Grey Nuns even explored taking over Public Guardianship of R, despite a supportive family, in order to “facilitate transfer!” Rebecca is scheduled to move to an assisted living facility this week despite her families wishes.

Since reading about Rebecca’s situation I have come across an alarming number of posts from loved one’s advocates and ‘patients’ themselves who have had similar experiences of being ‘punished’ for speaking up. Clearly these are dire situations that signal a lack of ovesight and the need for Alberta Health to step in and take a leadership role to  deliver on their Mission Statement of Albertans receiving “the right health care services, at the right time, in the right place, provided by the right health care providers and teams” including for those in long term care.  It is deeply troubling that the lived experiences of so many in this province have been the exact opposite. How many more tears need to be shed, lives lost and dollars spent before Alberta Health hears the wake up call of the most vulnerable in this province?  Why are feelings of fear, intimidation and retaliation so common?  

In the provincial budget released in October 2015, the NDP added $816 million to the health-care budget.  The government failed to honour a pledge to increase spending on long-term care and home care by $70 million annually.

Meanwhile Rebecca’s family is refusing to be intimidated and are continuing with their public campaign.  They want to bring attention to their situation so they can stop the transfer of Rebecca to a facility they feel is unsuitable for her needs. They also want the opportunity to engage in a fair and transparent appeal process with Alberta Health Care that will result in a positive and sustainable long term residential care plan. As for the here and now I will end this posting with the following text written by Rebecca’s sister Sue Ali whom you can contact at this address.  ali.longtermcare@gmail.com

So how can you help? Please pass Rebecca’s story on to others. Then email or call the health officials listed below …and maybe even call or visit your MLA.

SAMPLE EMAIL

“Dear _________,

I ask that you as the health officials involved in overseeing, monitoring and working with the continuing care residents intervene to 1) reverse the care status downgrade of Rebecca Ali and 2) stop her imminent eviction from Grey Nuns Hospital. It is unsafe and unfair to penalize and to place at risk, a vulnerable patient for the sake of bureaucratic expedience. Rebecca deserves better; Albertans deserve better.

– Sincerely,_______”

GREY NUNS
Grey Nuns senior operating officer, acute services Karen Macmillan karen.macmillan@covenanthealth.ca

COVENANT HEALTH
CEO Patrick Dumelie    patrick.dumelie@covenanthealth.ca

ALBERTA HEALTH SERVICES
AHS acting CEO Verna Yiu      ahs.corp@albertahealthservices.ca
Phone: 780-342-2000 Toll free: 1-888-342-2471

ALBERTA HEALTH SERVICES BOARD
ahs.board@ahs.ca

ALBERTA HEALTH
Asst to Health Minister Hannah Morton   Hannah.Morton@gov.ab.ca                         Phone: 780 638-9479 or 780- 427-3665
Deputy Health Minister Carl Arheim Health.     Deputy-Minister@gov.ab.ca           Phone: 780 422-0747

FIND YOUR MLA
https://www.assembly.ab.ca/lao/mla/mla_help.htm

HURRAH!

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This is just a very brief update to say that yesterday my Mother was transferred from the hospital to the same care home my Father is living in!  She handled the move swimmingly.  She thinks her room is lovely, the bed comfortable and is happy to be settled before Christmas.  Best of all she spent a nice long afternoon visiting with my Father without any of the stress of worrying about getting to the handi-bus on time,  fitting in with her companion’s schedule, dealing with the half hour cross town commute and Calgary weather and always having to explain why she is saying good-bye.

I will write more over the holidays, but just wanted to say thank you so very much to the ‘community’ of people that read and shared the (all to common) story of my parents experience.  There is no doubt in my mind that if not for the direct advocacy and social media ‘pressure’ that I would not have this good news to share.

Season’s Greetings, Happy Holidays and Merry Christmas.

 

 

 

 

 

PEOPLE ARE SICK OF BROKEN HEALTH-CARE

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The Huffington Post has published another article I wrote based on this blog. Shorter text with a catchier layout!  You can click on this link to read it.

I started this blog a month and a half ago. The level of response it has generated from people of all walks of life speaks to how far and wide the issue involving seniors health care is felt.  While there have been numerous public comments here and in other online forums the majority of feedback I have received to date has been via email.

Many health care professionals who work in Emergency departments have written to to say they see the scenario of the elderly being dumped out of the private assisted living system and left to fend for themselves at the doorstep of the hospital time and time again. Quite a few retired nurses have shared that they have seen first hand how difficult it is for seniors to find appropriate levels of care and places to live and they  are becoming increasingly worried about what the future holds for them as they approach that stage in life.  Individuals battling with their own illness have flagged that seniors health care is not the only domain mired in systemic problems.  They want to share that persons who have complex and chronic health issues can find it equally hard (and expensive) to access specialists and  testing.

The majority of people who have written to me are family members who are doing their level best to support their elderly loved ones.   They want to focus their time and energy on  doing the right thing for their parents or their spouse. Instead they end up spending an inordinate amount of time trying to mitigate the impacts of opaque policies and decision making processes that have profound and lasting impacts on the rest of the lives of their family members. Their level of frustration, burnout and despair is palpable thru the text.

Aging is inevitable and  often times so are the illnesses that go along with it. Having health care policies that do not seem to be working for anyone is not!

 

 

 

WHAT IS WRONG WITH THIS HOSPITAL?

hosp ext-Nothing, as long as you are not forced to call it home.

In August 2015 by her own choice my Mother went to a Walk in Medical Clinic to have her medications looked at.  The Clinic said she was having a drug interaction and she should go to the hospital to have further testing. Less than 24 hours later the Doctor called me to say her medications had been adjusted and she was fine for discharge.  Shortly after that the Doctor called back to inform me that the private assisted living facility my Mother was living in in the SE Calgary neighborhood of McKenzie Towne was refusing to let her back in and they were legally allowed to do so. It has now been almost 4 months since my Mother was unceremoniously informed she no longer had a place to call home.

She has been stuck living at this hospital with no medical reason to be there while she waits for a Long Term Care room to become available. This scenario is so common nowadays that a new category of care had to be defined to describe the status of patients such as my Mother: Alternate Level of Care (ALC).  A patient may be designated as ALC if he or she is occupying an acute care hospital bed but is no longer acutely ill and does not require the intensity of resources and services provided in an acute care setting.  Currently 15% of all Acute Care hospital beds in Canada are occupied by ALC patients who do not need or want to be there.

Our family continues to advocate to get my Mother out of the hospital and moved into Carewest’s Colonel Belcher building, the same facility  my Father lives in.  (see previous blog posts for details)

Before I continue I would like to make it clear that the hospital itself is a fine facility and no doubt it’s Doctors and Nurses achieve miracles on a daily basis on behalf of the sick and injured.  The staff are friendly and kind to my Mother. Everyone does their best but no amount of smiles and professional check in’s can smooth over the failure of health care policies that have left her stranded here.  Why are private assisted living facilities that are licenced by Alberta Health Services allowed to kick out their residents with little to no oversight or scrutiny?  How is it that a province like Alberta that has experienced many decades of wealth and prosperity has allowed itself to have such a massive deficit of long term care beds?

Speaking personally on the real life consequence of this failure of the seniors care system  I would like to share some observations  about what my Mother has to deal with day after day as she does her best to face the challenges of living her life inside a hospital. It is fair to assume that the 7,500 other Canadians who are also stuck living as ALC patients in hospitals across the country  are faced with similar scenarios.

My Mom is in a shared room with 3 other people. She has mentioned to me numerous times how uncomfortable she feels about sharing the same bathroom with the men in her room.  The people in the other 3 beds come and go as strangers, all of whom are facing their own crises.  Her part of the room has no window and a curtain as the divider between her and the person beside her. The closet is not designed for long term stays. It is narrow and half sized and would be most suitable for night clothes and a dressing gown, but not for a persons wardrobe. Though this may seem like a trivial point, part of what keeps my Mother going is making the effort to look nice.  Like many ladies of her generation she gets her hair set once a week, she keeps up with the style and gets dressed in her nice outfits every day. The day she gives up and decides it is okay to stay in a hospital gown  is the day we start to lose her.

There is no room for a reclining chair in her ‘room’ so she sits in her motorized power chair from morning to night.  When she needs to put her feet up to prevent swelling she has to do so in the bed.  Lights are always on, the room is full of extraneous sound from beeping machines, other residents TV’s, staff sending and receiving pages and overhead announcements. The shared room is always busy with a round the clock stream of Nurses, Doctors, Therapists, LPN’s, Cleaners, Volunteers and visitors.

My Mother says she has to do her ‘book work’ (going through her mail, reviewing bills, writing cheques etc.) by laying her paper work out on her bed. She also says she goes down the hallway to an unoccupied area when she is feeling down because she is embarrassed to have others hear her cry. She eats 3 meals a day, every day in her room as hospitals are not designed for patient interaction. This is the same reason there is no recreation program for her to take part in. She lives between the strange reality of having zero privacy and a high level of social isolation.

I asked my Mom to tell me what her days are like. Her response is that every day is the same, boring with nothing to do. She drives up and down the hallways aimlessly trying to pass the time. Alarmingly at one point she had befriended a using OxyContin addict. Fortunately she stopped talking about that person so I can only assume she was discharged.

These living conditions are starting to take their toll on my Mother. For the first month she was so shocked about her sudden and forced homelessness that she assumed there must be people in charge who would fix things as soon as possible. In the second month she was becoming increasingly nervous and worried that she was being monitored, therefore she and all her family members needed to be on ‘best behaviour’.  By the third month she was fixated on her husband and feeling guilty and frustrated that he was living (with a terminal diagnoses) at Carewest’s Colonel Belcher Long Term Care facility 35km across the city and she was only able to visit him once during the week with the assistance of a paid companion.  (Her routine does improve most weekends when family visits and gets the two of them together and out and about in the city).

Now my Mother is starting to give up hope. She feels helpless with no ability to change her situation, angry at the Assisted Living facility that barred their doors to her  and depressed by the growing realisation that she is stuck living with the consequences of a health care system that does not seem to have any answers. Even though the representatives of Alberta Health Services seem nice and genuinely concerned they do not seem to be able to solve this problem.

None of what I have written so far addresses the most serious consequence of all. Healthy people can get sick in hospitals. They are surrounded by illness and exposed to potentially virulent hospital bugs. Canadian studies have identified that  people like my Mom have a much higher risk of getting seriously ill and dying simply because they are living in a hospital rather than living in a facility that is more appropriate to their needs.   This is somewhat paradoxical considering that the private Assisted Living facility that imposed this move on my Mother justified their decision on the grounds that this was the best thing for her well being and quality of life.

As always I end my posts to this blog where I started.  I want to find a way to reunite my parents and hope that by bringing public attention to their situation and the overall crisis facing seniors throughout the country my Mother can get out of the hospital and move into my Fathers facility.

I also want to join the demands that a National Seniors Strategy be prioritized by the Federal Government. The Canadian Medical Association is advocating for this through their website http://www.demandaplan.ca/    If you have two more minutes take a look at this video rant by Dr. Chris Simpson. He makes a compelling argument that sums up everything I just tried to say.

Even though it feels hopeless at times, my advice to the many thousands of Canadians faced with similar circumstances as my family is to keep on speaking up and keep on keeping on.

http://www.myseniorparents.wordpress.com

@sdkennard

 

HOSPITAL LIVING. TIME TO FIX A BROKEN SYSTEM.

 

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This editorial by Noel Sommerville in the Edmonton Journal is a must read.

http://edmontonjournal.com/opinion/columnists/opinion-shift-continuing-care-to-public-sector

It flags many of the lingering questions family members and advocates have been mulling over in private and publically as they reflect on the oversight Alberta Health Services has on the Long Term Care ‘system’ and the real life situations people are dealing with on a daily basis.

Why is it that seniors care in Alberta has been largely privatised?  Who benefits from the fact that contracts between private/for profit care providers and the government are confidential, “meaning Albertans do not have the right to know how much public money is being doled out or what the terms of the contract are, and whether or not care is the No. 1 priority in these arrangements?”

I for one can tell you that my Mother is still living in a Calgary Hospital for no reason other than the fact that the private assisted living facility she was in dropped her on the door step of a hospital and there is no place for her to go.  She has been stuck in the hospital for close to 4 months now and no one is benefiting from this sad situation. Her spirit, confidence and outlook is continuing to erode, the cost to the tax payer is enormous and the stress on the family continuous.

Most outrageous of all however is that the  impact on the private care provider that decided both of my parents no longer contributed to their profit margin has been zero.  This assisted living facility in the McKenzie Towne neighborhood of Calgary continues to be subsidized by Alberta Health Services, continues to collect a small fortune in monthly rent from residents and continues to be accountable to no one other than their shareholders. The feedback from the residents and families falls on deaf ears and the contract with the province through Alberta Health Services remains unmonitored  with no mechanisms for accountability and transparency.

As Noel Sommerville notes in his editorial “the previous government not only stopped building new public beds, but also unnecessarily closed hundreds of functional public long-term care beds and often funded the construction of replacement beds owned by for-profit corporations. Some of the closed facilities, such as the Valley Park Manor in Red Deer, are currently empty and could still be reopened for public use.” In the meantime healthy persons such as my Mother are stuck living in crowded, yet socially isolated, hospital rooms with no access to recreation programs and no timelines as to when she will finally be able move into LTC.

Should we shift continuing care to the public sector?  By all means yes! Albertans cannot afford not to. Do not let promises of private/public partnerships, attractive chandeliers in the lobby, faux fireplaces in the dining room and compelling sales spiels be a substitute for the real care needs and quality of life priorities your loved ones actually need.  As long as we continue to be duped by private operators and silently tolerate their ‘protocols and standards’ as nonnegotiable,  Alberta Health Services will continue to prop up a system that redirects your tax dollars to massive multinational corporations and exploits the most vulnerable in our society.

Hospital Living  is the outcome when you have no choice at all.

As always I end my posts to this blog where I started.  I want to find a way to reunite my parents and hope that by bringing public attention to their situation and the overall crisis facing seniors throughout the country my Mother can get out of the hospital and move into my Fathers facility. (See previous posts for details).

I also want to demand that a National Seniors Strategy be prioritized by the Federal Government. The Canadian Medical Association is advocating for this through their website http://www.demandaplan.ca/   “The CMA and its campaign partners believe Canada urgently needs to get our health system in shape to meet the growing and evolving needs of our aging population.”

http://www.myseniorparents.wordpress.com

Susan

Follow me on Twitter @sdkennard