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Early Onset Dementia Alberta: EODA.CA

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Ken and char In 2009, my husband Ken was diagnosed with Early Onset Alzheimers at the age of 56. Our 3 children are now aged 28, 21 and 19 years old. Prior to diagnosis, Ken was employed as an Engineer within the oil industry and was advised to go on stress leave because he was “missing things” at work. He has never returned to the career that he loved and was highly respected for. He is now living in a memory care unit of a private assisted living facility. It has been a very difficult 5 years for our entire family. When diagnosed, all we were told by the doctor was to get our affairs in order. What did that mean? It has been a very long, tiresome and heartbreaking process. This road we are on will continue to be a very difficult one with very little support for my husband and our family. The incredible stress that comes along with this devastating disease spreads farther than just the person diagnosed. When younger people are afflicted with EOD any government supports that are available are just not suitable. Our age group is of such a different dynamic than what has historically been associated with dementia. Not only have I had to support our family financially & emotionally, I have had the responsibility for my elderly parents (my father passed away last Nov) my mother has since had a heart attack and a mild stroke. Our 2 youngest children are in university and have lived with losing their dad during their teen years. I placed my husband in care this past April as I just could not cope with him at home any longer. He is in a private facility with elderly residents, which was the best care available, however inappropriate. My husband is still physically active, can contribute and have a purposeful life, of which he deserves. Issues: Appropriate programs and care facilities for our young population diagnosed with dementias.

UPDATE (March 2016): Ken has been in hospital since July 2015 as two facility placements have been unable to care for him. He is still #6 on the waiting list for the one facility that is willing to take him. Ken is either in bed or in a chair. Ken is “chair ridden” and suffers bed sores. His ability to walk is declining because he is up walking only when family attends and gets him up even though he is mobile.

Wouter and PatriciaMy husband, Dr. Wouter Dehaeck, was diagnosed with Early Onset Alzheimer’s at age 55 in 2010.  He worked for 25 years as a family physician in Grimshaw and was loved by the community for his good service. Everyone was sad to see him retire so early in life.  He is an avid sportsman and still enjoys running, skiing and hiking. We now live in Calgary and belong to an Early Onset Dementia support group which initiated an adult day program for young people with dementia.  The day program is a pilot program and still needs a lot of fine tuning to accommodate our specific needs. We were all surprised that there was nothing in place to help us.  I still work and support our children at University, care for our parents and added to the full plate, now my spouse. My biggest fear is that in the future, I may have to hand over the care of my husband to strangers.  We have been married for 32 years and from care partner I will be reduced to visitor with no rights.  I fear he will be locked up in a facility on the third floor with no access to the outdoors. As our Minister of Health, could you please commit to giving us a national dementia plan?  Also, commit to establish a Czorny Alzheimer Centre as was done in Abbotsford, BC by Fraser Health. We need it in Alberta … a home-like environment with gardens, where family and volunteers are part of decision making.

Issues: Appropriate programs and care facilities for our young population diagnosed with dementias.

Gwyn and Marty
Gwyn was diagnosed with Early Onset Alzheimer's disease in late 2012 at the age of 54. She is still a young woman but a lot of her is missing.  She is no longer the vibrant, creative, independent woman that I married thirty-seven years ago.  Looking back, our first indication of trouble was five years ago when she suddenly announced that she was quitting her job. She said that everyone was giving her too much information at once and that she could not remember it all when returned to her desk...frustrated. I figured it was just stress; but, by early 2011, our daughter and I took her for assessment. The good doctors, certain that it was anything but dementia, first prescribed estrogen and later prescribed anti-depressants. After exhausting all other possibilities she was diagnosed as having 'probable' Alzheimer's. It has been downhill since. Gwyn has lost her independence and no longer drives.  She cannot even sign her own name. Old routines are difficult to repeat and everything new is an unsolvable puzzle. I was lucky to be able to retire early a year ago (at age 63) so that I can look after my wonderful Gwyn. Our children are independent, so far we are financially stable, but when things get worse, and they will, the stress will likely increase. Other families with loved ones suffering early onset dementia are often not as fortunate. They are not eligible for early retirement. They may still be raising children. Early onset dementia is a serious hardship for too many people. Our needs are different, and we need your help.  Issues:  Diagnosis, medical services and appropriate programs.

UPDATE 17 March 2016

It is almost two years since I posted our story. We have finished our travels. Gwyn needs stability and routine more than ever. She now goes to an adult day program three afternoons a week and enjoys her new friends there.

Gwyn's decline over the past two years is noticeable. Compared to just two years ago, she now needs help to groom and dress herself. Speech is difficult, so describing her needs and concerns is a guessing or show and tell type of game. Going up and down stairs is a slow process. Staying focused on a television show is iffy; even a Calgary Flames hockey game may lose her attention. But she is very aware of what is happening to her and struggles hard to fight depression. At this rate, two years from now I may not be able to care for her at home any more. Placing her in a long term care facility will be the hardest move we will ever have to make.

 Dalyce and Glenn July 2014My husband, Glenn practiced as an anaesthesiologist in Edmonton and Calgary for over 30 years. We were happily married, working hard and living well until a diagnosis of early onset Alzheimer's disease just as Glenn turned 55 turned our world upside down. His medical license was pulled the same day and the cash tap turned OFF. A terrifying whirlwind ensued: we sold our Brentwood dream home and relocated to a small bungalow in the walkable MacKenzie Towne community; the long, paperwork intensive process of applying to collect on disability policies began (we liquidated most of our sellable assets to get us through the interim); we met with multiple specialists and heard over and over that they had very little to offer for treatment and Glenn started taking Aricept. We struggled to make sense of what was happening and both of us entered a period of significant fear and depression. We cried until there were no tears left. Glenn spoke several times of ending his life because he clearly understood the long term implications of his diagnosis. I had managed Glenn's practice and our busy lives for the past many years, but after distressing and worrisome meetings with a financial planner I began at 54 to search for full-time employment. Shortly thereafter Glenn had to surrender his driving license. As his increasing dependence put great strain on both our relationship and health so the search for practical support and emotional counselling began in earnest. We were immensely fortunate to find an early-onset support group where we found our struggles were far from unique. Everyone’s' efforts hit a similar wall: support services, day programs, counselling - everything was geared toward SENIORS. My young and otherwise physically healthy partner revolted at being lumped in with 70 and 80 year olds. Being bored or condescended to makes his every negative behaviour so much worse. Now as symptoms worsen so does the disconnect between what is needed and what is available. So with others I write and call and plead with everyone and anyone who will listen: to keep my husband at home and out of institutional care for as long as possible. I have hired care aids but he needs day programming that is appropriate and supportive and that takes into account the fact that I am working 40 hours a week; somebody has to pay the bills. And somehow I have to look after my beloved husband who poured years of his life into health care for Albertans. I'm losing him. A piece at a time. My former physician husband, the bright, funny, kind and hard-working love of my life, is now a very much simpler man. He needs support to be as independent as he can be for as long as he can be.

Update: 2016
In the last six years a pattern developed: a period of decline, some levelling off for a while, then another period of decline, but each time he leveled off it was at a lower level of functioning. Until you've actually witnessed it, it's hard to picture just how much loss of short-term memory impacts a person's ability to function. As Glenn's disease progressed, his need for support increased: first Home Care - someone to come in and spend time with him and help with simple activities like making lunch, doing laundry and getting out in the community biking or walking. When home care was no longer sufficient we switched to a program called Self-Managed Care in which AHS essentially subsidized the cost of hiring private caregivers. I continued working full time and needed to feel like Glenn was safe and well looked after so I could focus on my job. That led to contracting with a care agency who could manage staffing. A company called Granddaughters Personal Care, Inc. did a spectacular job of sourcing just the right caregivers for Glenn and worked with me as his needs increased. By Fall of 2015 he could no longer be left alone, ever, and while he was still continent and otherwise healthy, he needed cueing and supervision for every activity. Paid caregivers were scheduled with him ten hours a day while I worked and whenever I wasn't working, I looked after Glenn. We packed a lot of living into those six years. Lots of adjustments and accommodations were needed and many activities were not what they would once have been, but I did the best I could… until I just couldn't any more. December 4th Glenn moved into long-term care. It's been a positive transition for us. The facility meets all our needs: it's brand new and looks like a nice hotel, Glenn has a large private room with a big window, it's only ten minutes from my house and it's easy to stop in on my way home from work. The caregivers have been kind and accommodating, and the food is good!  Glenn is completely accepting of this new arrangement which makes things so very much easier for me. I sometimes wonder if it is the physician in him that just "gets" that this is where he needs to be now. He has never once blamed me, or given me grief about the decision to place him in residential care. I think he has periods of awareness that he is continuing to decline. It's sad and it's frustrating for both of us. While we see each other often, the harsh reality that "I can't fix this for him" is my daily heartache. After years of wishing I could just get "a couple of hours to myself," now I am home alone. And being home with Glenn away is very different from being home, alone, and knowing he is never coming back.

It was irritating to me in these past years how many people would say to me, "You need to look after yourself. I hope you're looking after yourself."  Whaaat? What does that look like - exactly? I "managed" very well for six years of looking after Glenn.  I put one foot in front of the other, I got things done, and I took very good care of him. What I didn't understand is that there's a difference between 'managing,' and 'coping.' I managed very well, but I didn't cope well at all… because my entire focus was on caring for Glenn and for me that meant denying or burying every emotion of my own. I just became numb. So I got brittle and one day I just imploded. Nothing big or dramatic; I just got to the end of my rope and I knew I needed some help. I have no idea what the process of reconnecting with my emotions is going to look like but now I'm meeting with a grief counsellor. I hope it helps.

Stu and Petra 2
My husband was diagnosed with Early Onset Alzheimer’s at the age of 61. We have an 18 year old son at home who is having a very difficult time with dealing with his father’s illness but he is also trying to help me the best he can.  I have turned into the breadwinner for our family which is a huge burden on my shoulders.  This creates a situation where Stu spends a lot of time at home by himself.  He is registered for a Day Program twice a week but the rest of the time he spends sitting at home watching golf or the weather Channel on TV.  His only real highlight of his day is taking the dog for a walk around the park. Considering that he used to be a pilot and the Operation’s Manager for Westair in the 90’s that flew the air ambulance out of Vancouver, it is a very sad life now in my opinion.  He used to enjoy woodworking but I am concerned about his use of the tools anymore, especially if he is alone.  He also had an interest in playing golf.  But now all his friends have gone away and he spends a lot of time alone.  We have homecare coming in but they are limited in what they can do and they only come for an hour or two.  It is a bit of socialization but not much, they make sure he has eaten and dressed himself appropriately.  He needs to get out and do things and be stimulated mentally.  He is still physically healthy and active if given the opportunity, it is just his memory and speech that he is having problems with.  I wish I could stay home with him and get him more active but I can’t afford not to work, someone has to pay the bills.  We still have a mortgage, debts, etc.  Then I look at what my husband has to look forward to when I have to place him into care and that scares me even more.  It seems to me he would end up on a locked floor with a lot of old people without any access to the outdoors.  It is like putting him into Jail for no crime committed except that he has Alzheimer’s.  I just can’t see it happen.  This is just not humane; we treat our sick animals better.  There has to be a better way.

June and Larry 1 sized

June’s disease began to show symptoms at about fifty two years old. She was an intelligent, highly independent, resourceful career oriented woman. Everything she did she strived for perfection, highly disciplined, organized and an all-around athlete. (Won the Calgary City Championship in Racquetball) She did everything right… didn’t smoke, didn’t drink, ate exceedingly healthy (gave the rest of us lectures for eating hamburgers and hot dogs) and did crossword puzzles all her life. There is no history of dementia in her family…. She just got plain unlucky. June’ doctor was a family friend; June had curled with her, but she was reluctant to acknowledge the disease. My daughter tried for three years to convince her there was something seriously wrong. Doctors see their patients for a short appointment and the Alzheimer’s patients get really clever at hiding the disease. Most people have the impression Alzheimer’s is just a forgetful disease, myself included. When she first started having trouble I thought, no problem, she is with me and I can be her memory. This disease is both mentally and physically disabling. After struggling for twelve years, by the time June passed away (June 3, 2014) she could no longer walk or talk and had been confined to a wheelchair for a year. This Early Onset disease is a particularly crippling disease because if affects the whole family. You lose a bread winner and partner but you also inherit a childlike person who needs fulltime babysitting. In the meantime you have to work to support your partner and finish raising a family. They are particularly hard to handle because they have been independent, maybe even a supervisor, and now have the mental capability of a three or four year old. They are still convinced they are completely capable even though they can no longer dress, feed, operate TVs, microwaves, phones or vehicles. They are also, in some cases, highly indignant about home care workers in the home or going to Adult Day Care Programs. We were lucky with June, because of her highly independent nature, she was placed in the Centennial Centre at Ponoka and spent many productive hours building bird houses and kitchen stools in the woodworking shop. They have the facilities to keep the Early Onset type patients occupied instead of just sitting in a chair or getting into trouble out of boredom and frustration. We need more facilities of this calibre. The staff are excellent caring people. Eight staff from the Centennial Centre in Ponoka travelled to Red Deer to attend June’s funeral service. Two of them spoke and read the 23rd Psalm.

In 2007, at age 57, Bob was diagnosed with Early Onset Alzheimer’s disease. He lost his job and later his driver’s license. For a couple of years he could manage day to day: get groceries, tidy up at the house, a fitness class to start each day. Soon these simple chores became difficult. But the changes were gradual, insidious, like a thief who steals your husband while you are busy living. My hunt for programs, scheduled activities that would interest him began. The Recreational Therapists with AHS were great, but with only 3 for Southern Alberta, the waiting list is long. No program exists for someone who can be actively involved as long as they have some help. Bob needs to be cued for almost every daily living activity, but he is still very active; he loves to walk and ride his bike. Even though his verbal skills have deteriorated to the point where he cannot follow simple directions, and no one really knows what he is talking about, he does love to visit. Bob is still living at home because I have the Home Care support that everyone else I know in EODA needs but are having difficulty getting. But the time is approaching when even this won’t last. And where will I place this warm, funny, gentle and very energetic man?

May 14/15  Four months ago I moved Bob into care.  I  thought my heart would break but I just couldn't do it all any more.  I couldn't be 'on' 24 hours a day anymore and when it came to the point of me or him I did what I felt I had to do.  And already I see the changes, faster now.  He is all about the moment, if the moment is good, he is good.  Extra staffing to get him out in community is very close to the same cost as having him in care.  He still loves to walk, to be with people, to visit, to bowl, to be out for coffee, to go to Walmart!  and I guess that is what we saved for, to take care of us when the time and need came. But we never thought it would be now.  65! Living in care.

UPDATE (March 2016): Bob moved into St Mikes Health Centre in January 2015. I thought my heart would break but I just couldn't do it all any more. I couldn't be 'on' 24 hours a day anymore and when it came to the point of me or him I did what I felt I had to do. A year later people ask how he is doing. They ask because they are our friends, because they care and I have to remember that because I feel like shouting How Do You Think He IS? He can’t dress himself, or clean himself, is totally incontinent. If he was hungry he doesn’t know how to find the fridge, or a cupboard and get a cookie! He just doesn’t get it. Sometimes he instinctively knows “pull up the pants” but could just sit with his pants around his knees. He can’t turn on the tap to get a glass of water. He is all about the moment, if the moment is good, he is good. If people speak kindly, he responds. His world is so small now. He still loves to walk, to be with people, to visit, to bowl, to be out for coffee, to go to Walmart! Extra staffing to get him out in community is very close to the same cost as having him in care. I consider myself lucky I am still working so I can afford to provide that level of care. I guess that is what we saved for, to take care of us when the time and need came. But we never thought it would be now. Bob is 66. I am 60. But what if this goes on for another five years?

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