It all started with a few forgotten items and confusion with directions.
On a familiar car trip, Harold turned the wrong way out of a rest area and continued for kilometres, convinced he was going the right way. At the hotel, he locked himself out of the room in the middle of the night.
Those early signs of dementia in her husband would continue to grow as Elizabeth spent the last bits of her physical and emotional health caring for a spouse that gradually turned into someone she no longer recognized.
(Elizabeth and Harold are not their actual names. Black Press has agreed to withhold their names so that members of the family cannot be identified.)
In her mid-70s, the Castlegar senior has health problems of her own, but she put them on the back burner as she struggled to do her best to care for Harold, her spouse of 21 years.
Before long, Harold was not paying attention to conversations. But Elizabeth was in denial about what was happening 害羞草研究所� making excuses, covering up behaviours and trying to compensate for his struggles by altering things around the house and in their lives.
She kept the problems to herself, not even sharing them with her children.
As Harold害羞草研究所檚 dementia continued to progress, Elizabeth gave up much of her social life, including playing golf, a pastime she was passionate about.
害羞草研究所淚 just put on a brave face,害羞草研究所� said Elizabeth.
Harold demanded his food be prepared in precise ways and times. He became obsessed with the house temperature, turning up the heat to 30 degrees at every opportunity. He would pace the floor all night long.
He would leave the water taps running, flooding the bathroom and used the toilet as a garbage can, necessitating the need for continual repairs. He racked up bills in the hundreds to thousands of dollars in pay-per-view movies.
Eventually Harold began to lose control of his bladder and bowels and Elizabeth added daily laundry and bed changes to her list of chores. If the accidents happened in the car, she would have to clean that too.
Yet still Elizabeth trudged on as his sole caregiver.
Harold also became verbally abusive and Elizabeth would wake up to find him standing over her in the middle of the night. She moved out of her bedroom because Harold would unintentionally hit her in the night as he tossed about.
Elizabeth would still take him out to eat and drive him to appointments, but Harold would yell at her while she drove.
害羞草研究所淚t was really dangerous,害羞草研究所� said Elizabeth, who at times would have to pull over and cry before she could continue on.
Elizabeth害羞草研究所檚 son began to notice that she had developed a tremor in her hands, but she claimed it was just from being over tired.
害羞草研究所淪he didn害羞草研究所檛 share these things with us,害羞草研究所� said her son James, who is heartbroken over the hard times his mother has endured.
Meanwhile, Elizabeth says she was actually 害羞草研究所渟haking on the inside and the outside.害羞草研究所�
It wasn害羞草研究所檛 until Elizabeth needed to travel for a medical appointment and James came to spend a night with his step dad that the family began to get a glimpse of what life was like at home for their mom.
害羞草研究所淚 didn害羞草研究所檛 share what was going on, because I thought it was my responsibility to care for him,害羞草研究所� explained Elizabeth. 害羞草研究所淚 couldn害羞草研究所檛 allow myself to think that I couldn害羞草研究所檛 take care of him because I felt like it was my responsibility, regardless of how my health was spiralling downhill.害羞草研究所�
At times Harold was assisted by support workers who would check in on him, but they were there for Harold, not Elizabeth.
James says this is where there was a gap in available support services 害羞草研究所� there wasn害羞草研究所檛 anyone to care for the caregiver.
After seeing what his mom went through, James now encourages family members to take a closer look at how the seniors in their circle are really doing.
害羞草研究所淰isits that are 30-to-60 minutes really don害羞草研究所檛 reveal the truth,害羞草研究所� he says.
The family began to urge Elizabeth to place Harold into a care home. But it would take another year and a half before she would agree.
James feels strongly that more needs to be done to support the caregivers.
害羞草研究所淲hy are we missing the caregiver? Everyone is so concerned about the person who has broken their hip, or who has dementia, but the person that is caring for them needs help too,害羞草研究所� said James.
害羞草研究所淗arold was having all his needs met, but mom was crashing.害羞草研究所�
Personally, he thinks his family could have benefited from workshops or classes regarding the warning signs of dementia and caring for those with the disease, and that those supports should be promoted and available locally.
Recognizing the problem
Castlegar senior害羞草研究所檚 advocate and Project IRIS co-ordinator Sandi McCreight says Elizabeth and Harold害羞草研究所檚 story is all too common.
A by B.C.害羞草研究所檚 seniors advocate Isobel Mackenzie found a 49-per-cent increase in abuse, neglect and self-neglect cases over the last three-to-five years across the province.
害羞草研究所淭he more we understand about elder abuse the better,害羞草研究所� says McCreight.
McCreight says there is a lot of misunderstanding regarding the term elder abuse with many only picturing the worst-case scenario. The term encompasses more than outright physical and mental abuse. It includes self-neglect and systemic abuse or neglect.
She says she has heard from seniors who feel so beaten down by the health care system that they don害羞草研究所檛 think they are worthy of asking for help or telling their stories.
害羞草研究所淭hose people that don害羞草研究所檛 have someone like James in their life 害羞草研究所� those are the ones that struggle the most and it is not until something dire happens that anybody gets involved,害羞草研究所� said McCreight. 害羞草研究所淭hose are the saddest cases.害羞草研究所�
McCreight says some of the most difficult things about reporting elder abuse are the fear of repercussions, shame, embarrassment and the fear of living with it in isolation.
害羞草研究所淚t害羞草研究所檚 easier to abuse someone in isolation, and isolate someone who is being abused,害羞草研究所� explains McCreight.
The difficulties in finding proper care or facility space for seniors can be a huge obstacle for many spouses or families, according to McCreight.
害羞草研究所淭his should not be their problem 害羞草研究所� this should be the health system害羞草研究所檚 problem. You should be able to say, 害羞草研究所業 can not handle this,害羞草研究所� and that should be it.害羞草研究所�
But that isn害羞草研究所檛 the reality. Interior Health currentlyfor care home beds in the Kootenay Boundary region, depending on which facility you are looking at. In other parts of the Interior Health region, wait times can be up to 18 months.
To help solve the problem, McCreight would like to see more funding for seniors supports, more staffing, better training for senior害羞草研究所檚 workers and help phones that are always answered.
She says two of the most important things to be aware of when considering if it is time to move your family member to a care facility are a continued decline in capacity or an increase in aggressive behaviour.
McCreight says it doesn害羞草研究所檛 matter whether the aggressive behaviour has malicious intent or not, it needs to be prevented and addressed before the caregiver is harmed physically or mentally.
She encourages everyone with seniors in their lives to learn how to recognize the signs and symptoms of abuse and neglect. IRIS offers free training sessions for individuals or organizations, and can be reached at 250-608-0706.
Making 害羞草研究所渢he hardest call害羞草研究所�
For Elizabeth, the final straw happened when an overnight care giver was brought in for Harold while she travelled to a medical appointment. During the night, Harold became sexually aggressive towards the caregiver.
She decided it was time to move Harold into a care home. But the family was met with the news of a two-year wait list. The news was devastating and Elizabeth knew she could not continue that long.
The family arranged for Harold to go into respite care for 25 days. They spent those days encouraging Elizabeth to leave Harold there when the time was over.
害羞草研究所淚 was so stressed and under such huge anxiety over the thought of him coming back to the house,害羞草研究所� said Elizabeth.
But she waffled back and forth in the decision. Ten days before the pickup date, the family phoned the care centre to let them know Elizabeth would not be taking Harold back home.
害羞草研究所淭hat is the hardest call I have ever made in my life,害羞草研究所� said Elizabeth.
害羞草研究所淓ven after that, I was so stressed that someone might bring him back.害羞草研究所�
Elizabeth acknowledges the situation caused a disruption for Interior Health, who called her numerous times in the following days to get her to come pick Harold up. She was told she had to pick him up because she had signed an agreement. The calls caused her tremendous anxiety.
Eventually, the family told her not to answer the phone and assured her that Harold would be taken care of and not cast out into the street.
Interior Health found a temporary bed for Harold in a facility in another city, and Elizabeth went to see Harold while he was there. It was the first time in years she faced him, not as his caregiver, but once again as his wife.
害羞草研究所淵ou stop being a partner when you become a caregiver,害羞草研究所� she said.
It was only a matter of weeks before a spot in Castlegar was found.
In the following weeks, Elizabeth continued to struggle with guilt, her own physical needs and her mental health. She visited her family physician and a counsellor.
害羞草研究所淢y doctor told me, 害羞草研究所楾hey can take better care of him than you can.害羞草研究所� But I thought, 害羞草研究所楴o one can take better care of him than I can,害羞草研究所櫤π卟菅芯克鶟 said Elizabeth.
害羞草研究所淏ut, of course, they can 害羞草研究所� they have a full staff on 24-7. I was on 24-7 by myself here. I had no break in three years, with no days off, no nights off.害羞草研究所�
It would take her a while before she could get to the place emotionally to feel good about the decision.
Since Harold has settled in at his new home, Elizabeth has discovered that he doesn害羞草研究所檛 really care who is taking care of him, just that his needs are being met.
害羞草研究所淗e is still my husband 害羞草研究所� he just lives there and I live here.害羞草研究所�
She is also thankful for the front-line workers who care for Harold every day.
害羞草研究所淥ur doctor and the care staff at the facility made us feel like we were their only clients,害羞草研究所� said Elizabeth. 害羞草研究所淲e appreciate them so much. They don害羞草研究所檛 get enough credit. He is always attended to right away. He is happy and comfortable there.害羞草研究所�
Looking back, Elizabeth feels she kept Harold at home for at least two years longer than she should have.
Now, a year and a half after relocating Harold, Elizabeth is still receiving treatment and counselling for her own anxiety and depression and trying to recover emotionally.
Counselling was something that was not offered to Elizabeth throughout her time caring for Harold. It was through her own doctor, after the fact, that she was finally connected to that support.
In retrospect, Elizabeth wishes she had sought help earlier and is telling her story because she wants to help others who may be going through similar situations.
Elizabeth says most visits with Harold now are good, at times they can even play a few card games. He has adjusted well to his new routines and is comfortable in the care centre.
She says it害羞草研究所檚 finally time to dust off her golf clubs, and her face lights up at the thought of returning to the greens.
害羞草研究所淚害羞草研究所檝e already bought my pass. I am going to be out there first thing.害羞草研究所�
How to get help
害羞草研究所� For urgent help, call 9-1-1.
害羞草研究所� Each health authority has a designated agency to report abuse, neglect and self-neglect of vulnerable adults 害羞草研究所� agency responders investigate reports. FOr Interior Health, Call 1-844-870-4754 or on the Interior Health website.
害羞草研究所� The Seniors Abuse and Information Line (SAIL) is a safe, confidential place for older adults and those who care about them to talk to someone about situations where they feel they are being abused or mistreated. Call 1-866-437-1940 (8 a.m. - 8 p.m.)
害羞草研究所� Community Care Licensing Offices investigate complaints about the health, safety or well-being of people in care at licensed community care facilities. Call 1-877-980-5118.
害羞草研究所� 2-1-1 offers information on programs and supports available in your community. Go to the website or call 2-1-1.
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