My Mom, My Hero Presentation for Alzheimer Society Annual Provincial Conference Tuesday, Sept. 29, 2009 2:45-3:30PM Good afternoon. First of all I would like to say thank-you to the Alzheimer’s Society for asking me to speak today. Thank-you in advance for listening to my story – I have to tell you I have not done a lot of public speaking so please be patient with me. I will promise, however, not to talk too long. I want to tell you about my mother, Oda McKay. Oda was born in 1925 and was raised on a Saskatchewan farm with six siblings. Mom trained as a registered nurse following in her two older sister’s footsteps. She nursed for a time and then married my father and began raising a family of 4 – three boys and me, the baby. At the age of 32 my father died and Mom was left with four children – I was only a couple of months at the time. Mom continued to farm with her in-laws and raise her family while nursing part-time. She then moved her young family to Saskatoon for a year where she took a health-care administration program. In 1965 we moved to Watrous where Mom was the director of nursing for 25 years. She worked through nursing and support worker strikes the building of a new hospital and by all accounts was a firm but fair administrator and a good nurse. Mom is intelligent and witty, with a wry sense of humour. She loved poetry and could recite any number of verses. SHE is actually the public speaker in the family and was called upon on many occasions to be the master of ceremonies for community events. If you needed a poem or skit to be created for a local event – call Oda. She enjoyed watching all sorts of sports (especially following her children & grand children) and playing softball (into her 50’s) and curling. She was active in her church and served on many community boards. She was given the honour of Citizen of the Year for Watrous a few years ago. Mom was physically strong, hard-working and dare I say stubborn. She was fun, lively and loved entertaining. She is a wise and proud person. The other day I told her I would be speaking at this conference and asked her what she thought I should say about her – should I tell you what a good job she had done raising her 4 wonderful children? She got a twinkle in her eye and smirk on her face and said, “let’s not get into that!” Mom retired from her job in 1990. She had a heart attack a few years later, but seemed to recover very well and enjoyed an active retirement. For the past 2 years Mom has been a resident of the special care home where I have been the Recreation Co-ordinator for the past – get this- 31 years. I’m always kind of embarrassed to tell people I’ve been doing the same job for that many years. After high school graduation I attended the University of Saskatchewan where I received my Bachelor of Arts, majoring in sociology. I had intended to go into social work, but got married instead. I took the part-time job at the nursing home until I could find a “Real Full time job.” I still love my job and think I have the best job in the building. I have always worked half time allowing me time to raise 3 children and follow other interests. I hoped never to have my Mom in any nursing home, but feel priviledged that I can be close to my Mom even while I’m working. My Mom has not been diagnosed with Alzheimer’s Disease and I’m pretty sure she does not suffer from Alzheimer’s. As I mentioned she had a heart attack some years ago and most likely has vascular dementia. Call it what you will; the causes may be different, but in the end, the results are much the same. Mom probably started having some typical age-related memory loss 10 or so years ago. Mom lived alone in a beautiful, big old house that was her pride and joy. She loved to entertain and host all the family celebrations – Christmas, Easter, baptisms, family reunions – she hoped to die in her house. Gradually her memory loss became more apparent and she showed slight changes in her personality – she seemed not to have patience with her grandchildren who she doted on and was so proud of. Over time Mom began to forget appointments, but still functioned fairly well on her own. However, the typical things started happening – I would come over and find a burner left on the stove – she was still smoking so that was always a concern. She started receiving home-care the last couple of years that she was at home. She did not readily accept the idea so we started out slowly with meals on wheels and an evening visit to remind her to take her pills. Being the type of person she was, self-sufficient, proud and independent, she didn’t always have much use for her home care aides and sent them packing on more than a couple of occasions. Mom lived only a block from my family so it was easy for me to keep an eye on her – I could watch her walk home from my house after a visit and know she would be safe. As time went on, she became more dependent on me for most everything including looking after her financial and household affairs. Her social contacts began to shrink due to her memory failure and behavior changes. Fortunately Mom was still able get around quite well so we could attend most of the social functions that small towns have to offer. During this time we were a typical busy family with 3 children involved in many activities, my husband in his business and me working part time. Though I may have felt a bit stretched between the kid’s activities and keeping an eye on Mom things seemed to work out ok. She usually just came along to ball and hockey games or dance recitals. My husband was a pretty good sport and Mom really liked him so that was a help, too. Mom stayed in her home probably longer than a lot of people might have in her situation and longer than some people thought she should have. But living in a small town made it somewhat easier – neighbours would keep an eye on her. People would call to say Mom was out and looked a bit disoriented so they had taken her home. Our family knew she was living at risk but she was adamant about staying in her own home. It became a sort of balancing act weighing the risks of independence versus her safety. Mom had an episode with the microwave that caused serious smoke damage to the house – this while my family was away on holidays and 2 of my brothers were staying with her. Apart from the dementia, Mom was having problems with osteoarthritis. Even though she was beginning to have trouble getting around, she still managed to get upstairs to bed every night. In June 2006 my husband was diagnosed with stage 4 colon cancer. A month later Mom lost her youngest son; the brother who was closest in age to me. By this time Mom had the maximum amount of homecare hours allowed. That summer and fall, friends and family pitched in to help care for Mom and as per usual, Mom herself seemed to summon some inner resources to cope mostly on her own. We lost my husband in November, but somehow we all soldiered on, Mom included. In the following months Mom seemed to become more needful of my time or maybe it was that I was less equipped to care for her and my grieving family. At times I resented the very qualities I had always admired in her – her strength, her single-mindedness, her intelligence, her resourcefulness. At one point we had disconnected the stove to prevent a fire – she wasn’t cooking for herself at that time- and even though she couldn’t remember what day it was or any number of other useful things she was able to phone the local furniture dealer and get him to hook up the breaker box. Fortunately he knew her history and phoned us to see if it was ok. Those qualities that enabled her to go back to school with 4 children and carve out a career and life in a new community as a single Mom were somehow now causing distress to the people providing care for her, including me. Why couldn’t she be like some of those people who meekly went along with things? Of course, that is not the Mother I know and am proud of. She would not “go quietly into the night”. I began to bring Mom to work with me for day care. I said it was to “help me out and volunteer”. Surprising to me, she didn’t seem to mind coming as long as I was there. By this time it was becoming apparent that she was afraid to be alone at home. Still she wasn’t interested in moving, but started to appreciate her home care and respite workers more. After a couple of stints of respite at the Lodge and a hospital stay Mom was admitted to the special care home as a long-term care resident. It nearly killed both of us. I was alternately relieved she had a safe place to be and guiltridden for putting her there. Even though she was hobbled with a hip that needed replacement Mom was able to pry off the screens and escape through windows on a couple of occasions. As I said before, I didn’t ever want to have my Mom in a nursing home. Even though I have worked in a care home for over 30 years and I believe we provide good care, it is not something you wish to happen. What finally allowed me to accept her move was that she wasn’t comfortable in her own home anymore. She would call at night and tell me she was frightened, but she didn’t know why. We have resisted every step of this journey – she and I for as long as we could. In the last couple of months Mom has gone from being able to walk to being confined to a broda chair, wearing open-backed clothing, being dependant on mechanical lifts to move her and being on pain medication which seems to somewhat relieve her near constant pain, but leaves her alternately dopey or frightened. Still she resists this assault of age. I have seen a number of changes in long term care over the span of my career and yet sometimes I think things have not changed enough. The best care we seem to be able to give our frail elderly and dementia care residents doesn’t seem to be good enough. There often seems not to be enough staff to spend quality time with patients. We can’t seem to keep people pain free without having them overmedicated. Should we really be housing our elderly and dementia care people in large or even small care homes as we do now? After having a mother in long term care, I’m not so sure anymore. I have thought about the care my fellow workers and I have provided over the years and for the most part I am proud of the work we do. I believe we show compassion for the people we care for, but it is different when it’s your own family member. When other residents got to difficult times in their life journey I could emotionally withdraw a bit – but there is no withdrawing now. And while I can understand the difficulty my fellow staff have caring for my Mother when she reacts with anger and frustration to their to care for her, I can only advocate her. Right now my most important job is to think of what is best for her, not what may be best for the staff or the facility. At times it is difficult to try to fulfill my roles of health care worker and daughter without shortchanging one or the other. I’m afraid I’m becoming “one of those family members that drives the staff crazy – you know – the demanding ones who are a pain but send the really good chocolates at Christmas. I have to say that my fellow staff members have been very professional and patient with me. In fact, all through this process I can say that the health care professionals we have worked with from doctors, nurses, home-care and long-term care workers, have been compassionate and caring. More than that, they recognized that families need to be involved in care-giving decisions and have been patient and respectful of our wishes. I am thinking now also of the last couple of weeks of my husband’s life in Royal University Hospital. Our family had basically moved into hospital and was anxious to help with Garry’s care. We needed to be there to do whatever we could, but I’m sure we must have been a bit of a menace and a disruption to their normal routine. To their credit, never once did the staff make us feel unwelcome. At some time as a little girl I came to that point where you get a recognition that you might not always have the people you love with you. I remember promising my Mom, “ I will never leave you” – one of those childish promises that tend to be forgotten. Often now my Mom says to me, “please don’t leave me”. There are a couple of things I have come to know about working with dementia care people: They recognize the people who SINCERELY care for and about them. They know the people they are safe with. At one point a neighbour of mine became a resident of our home. She had memory impairment due to a series of strokes she had suffered, but she still remembered me. We had been pretty good family friends over the years. Well, in time she began to call staff members, friends and even her family members “Melanie”. One day after returning from holidays I was introduced to a new staff member. She said, “Oh, you’re the Melanie”. The point is my neighbour may have forgotten many things including time, place and even words, but she remembered a name she equated with friendship, familiarity and safety. Dementia care people know the people who treat them with respect and love. I don’t think I have told you anything you didn’t already know, but I do want to thank-you for the good work you are doing. It is good work so please continue it. Now, my Mom would have a very good quote or something witty to say right about now. I’ll just say thank-you for listening to my story. And Mom, “I’ll never leave you”.