It wasn’t until my Dad was diagnosed with Early Onset Alzheimer’s at the age of 55 and could no longer be cared for at home by my Mother that I ever thought much about our Long Term Health Care System, and the kind of care those under this plan or system would receive. I am only 31 years old and really, I have time don’t I?
My Dad was first placed in a small farming community nursing home where he was known by the staff and caregivers. The facility was two hours away from our family, older and a bit run down. They had no air conditioning, but used fans that were drilled into the corners of the hallways to try to circulate the air better. The rooms were small and for basic care (which is what my Mom could only afford) and generally required between 4-2 people to a room. My dad was lucky to receive bed in a room with only one other person. He had a curtain for privacy, a small bathroom and one side of a closet, which he shared with his roommate. For meals all the residents were taken down to the main floor for meals via the elevator. This meant the workers had to start about 45 minutes before lunch was served to ensure everyone got down into one of the two elevators the building only had. Once the meals were over, everyone had to pile back into an elevator sometimes only fitting two or three at a time depending if they were in wheelchairs etc, to be taken back up to their floors/rooms. My Dad found this all very disruptive and a rather long process each day. If family came to visit Dad you could take him out to the small garden area that was fenced in during warmer weather or down to the small “library” which contained a small book case of books, two small sofa’s and a TV. Other than that there wasn’t really any place else you could go for privacy to chat and visit with a loved one. They had a small kitchen area you could use if we wanted to eat with Dad. We got one free meal with Dad upon him entering the nursing home and then after that we had to pay to eat with him.
After about a year he was transferred to a newer long-term care facility closer to our family. This place had a new wing built specifically for patients with Dementia and Alzheimer’s. My Dad was lucky to be placed in the new wing of this facility, so I thought. The wing is beautiful hardwood floors, nine foot ceilings, and is brightly painted. Dad was given another basic room which he shares with only one other person. It is huge, has lots of room. They provide a nice reading chair, chest of drawers, a night side table, lamp, a curtain for privacy, a standard issue hospital bed, and a new larger bathroom. He has a lovely window as well. The new kitchen and eating area was now on the same floor and only the patients on his floor (35 patients in total) eat there. They also have a big common room that also has a fenced garden they can go out and sit in the in warmer months of the year. They also have a chapel on sight and nice party type room when groups come into entertain the residences. I thought this was going to be a great change for Dad being in a nice new facility. But was I wrong.
I was told there were 3 PSW’s for 35 patients on Dad’s floor and two nurses on duty for 12 hours shifts. I was surprised one day when I came to visit my Dad and he was sitting alone completely in the dark in his room at 6:45 p.m. in the evening. Because the advancement of Dad’s illness, which has effected his cognitive abilities, he wouldn’t know enough to find the light and turn it on himself. I thought that perhaps a PSW would have come by after dinner to turn on the light in his room since it was dark outside and not near “bedtime”. I have also come and found that patients are just “sitting” around in the hallway doing nothing or often needing some assistance (looking for their room, needed a drink, needing cleaned up) and I think to myself, where is the staff? Do they not have people to come along and just check in on patients to ensure they are okay and need anything and are comfortable for the evening. I was told that there just isn’t the staff to do that all the time. I was surprised to find out that government regulations state that a patient is only allotted 2 hours a day of care by the staff. That is basically getting them up, helping them get dressed, bathing them, maybe getting them one /two snacks a day or taking them to the odd “activity”. Dad is entitled to two baths per week. We were also told that they only supply “Depends” for the “day time” only. Mom actually has to go and buy them for night time!! Are you seriously kidding me?
I think to myself that this is it? Just because someone gets old and they need more help caring for themselves or by a loved one, that this is what they have to look forward to – a room with a bed, maybe a window, and a curtain for privacy, a shared bathroom and closet. Wow does that look like a lovely place to live out the rest of your days? Of course if you are wealthy and have lots of money you can afford private care which would mean modern, beautiful facilities, private rooms that you can make your own etc. But lets be real, for most this is the end of the road - a government run facility that depending on the funding from the government can range from just being “adequate” to “nice”. This is how the government appreciates the elderly. People that have lived their whole lives in Canada, paid their taxes, voted etc and this is how we say thank you. I mean there are beautiful birthing rooms in hospitals around Ontario to be comfortable to bring a new baby into the world, but nothing is done to provide comfortable, adequate, care to the elderly and sick. Things need to change because I do not want to live like this. Would you?

I am at a sad moment in this horrible journey. I feel so alone... my siblings don't understand where I am coming from and tonight reading everyone's comments... I feel less alone. I am not the only one who feels this way. Thank you for making me feel less crazy and justified in the love, care and concern I demonstrate for my poor voiceless mother.

My younger sister died recently due to complications with bleeding ulcers, but was an Alzheimer's desease victim. She fought the desease for almost ten years.
At the end her speech was completely slurred and difficult to understand.
But what was amazing was that when her loved ones were gathered during her last two weeks, on request she sang her favourite songs without almost any trouble, but at the end finished by speaking with her usual slurred speech. Everyone was awestruck. Even now when we see the video it is incredible.
I aslo happen to see on TV, a recent incident about a man with Alzheimer's desease. His whole body shakes so much that he is unable to stand up. But when some researchers made him ride a bike, he did so without any trouble.
So I am interested in any research into the fact that the brain has different cells for, the different activities, such as above,

And lastly, is there anything we could have done in this regard to help my sister, and ofcourse thousands of other victims of this awful desease.

Any comments ?

My parents have declined considerably in the past 2 years. Mom has had Parkinsons for about 13 years, she did very well managing the illness and kept very active (she could out walk me). Four and a half years ago our eldest son was married and on that day we were thrilled to have his Grandparents present, the picture sits in our kitchen of our son his bride and their Grandparents on both sides. It was such a happy day, one we will all treasure forever. Mom told me while she was visiting that she could feel a difference in the strength of her legs and that things were changing. I didn't want to believe that my little but fiesty Mom was beginning to decline. In the past two years there has been a huge change in Mom, she now has Lewy Body Disease (dementia) my understanding is that due to the Parkinsons she was at greater risk of developing this. I live in another province, my two siblings live close by Mom and Dad. My oldest brother has taken on most of the responsibility along with his partner for our Mom and Dad. My younger brother was born late in our parents life so he is young and has his young family to raise. Last spring we were told that our Father too has dementia early to moderate stage. My parents are in their late 70s, still living in their own home. Mom has psychotic dillusions and hears voices from all over and everywhere, the radio, the tv, the other houses in the neighborhood. She often believes that one of her children has been in an accident and that she must get to them. My very responsible Mom believes that she still has children that she is responsible for in her home and/or at the school and wants to shop for them or pick them up. She has been found wandering in the back alley. (a bracelet has been ordered from Alzheimers Society) I could go on and on as to the strange behaviours she exibits.It is so sad and unfair that she is so afraid at times, angry, paranoid. Not like the Mom we all know. We are all trying to adjust and as you can well imagine, it is a greiving process. Dad is watching over her and he does a very good job but he is only human and also has his own dementia difficulties. Myself and my brother's partner have tried to advocate for them and in the past Dad wouldn't have anything to do with home support (Mom had some willingness then), but after an assessment was done and things were set up Homecare called my parent's home and Dad said they were doing fine and didn't need any help. As their children we were all frustrated and fearful for them. Several months later now though, Dad has said he is willing but Mom is now saying she is not. In November of 2009 the geriatric specialist saw my Mom and he expressed concern for her safety. I felt optimistic that with a Social Worker assigned something had to happen to make things better for Mom and Dad and all of us. The Social Worker met with as many family members as could attend and a while later she called me to say that the home care people had been contacted and they would go in BUT, get this, only if my Mom committed to on-going weekly scheduled home care. My Mom who has very bad dementia, and may say yes at 10 AM and no at 10:30 AM and they expect this poor soul to sign up! I left a message for the social worker and asked her if there is some kind of provision for folks with dementia, a gentle perhaps gradual entry so that my Mom could get to know the care person and possibly feel a comfort over time, couldn't they give a trial period? I asked aren't they trained in this with so many people having some form of dementia? Shouldn't they know more than us? I didn't hear back from the Social Worker and so I just don't know what to do anymore. I was travelling to my parents home (they live in Alberta) quite often but in the past several months I have had to go less. I'm in the sandwich generation, I work 3/4 time in a responsible postition, am a
Grandma myself and have a husband with health problems. I feel guilty at times like so many of us can and do. I'll keep working on things. I don't give up easy but at the moment I've had to take a bit of a break from it all, I have a list of tasks that I'll be starting on in the next week to look at options. Thanks for reading this.

If Doctors would only check Men and Women for their Blood IODINE they would be able to see if it is too low and build it up - Blood Iodine is the oil for the brain and when it is too low then the disease starts to set in.
When you have a BLOOD TEST HAVE YOUR DOCTOR INCLUDE THE READING OF YOUR BLOOD IODINE
If it is low - start to build it up fast.

You loose track of time once a parent is in the 'system'...you try to fight for the rights of that parent & you are worn out. It happens fast....the parent looses 'everything'....you see them deteriorate as time passes...there really is nothing stimulating in the wards & staff just aren't trained in the area of Alzheimer's. The stress we faced as a family the first 2 years aged us all & although we are still 'dealing' with things....the 'craziness' has lessened, to some degree. We all want the best for our loved ones...placing mom was one of the most difficult things we have had to do...we have lost the lovely person that she was....strong, independant, kind...there are the occasional glimpses of that person...less & less as the disease takes control. We are thankful to still have mom but we all feel she certainly deserves better. The quality of life she has in a nursing home is less than what we hoped for & I certainly do not want to end up in a care home when my time comes. There has to be a better solution.

I as a daughter have been traveling from Squamish to Langley since 2006 when it became evident that dad could no longer care for mom (with alzheimers) in his home, but would not let us have any help come in. I work full time and spent many weekends sorting out many problems. In 2006 my dad had a stroke and my mom could not remember the number for 911, so it was a few hours before my mom got hold of my brother who finally called the ambulance. A casemanager finally came into the home in October 2006 and my mom was at 13/30 in a mini mental test with still no help allowed by my parents. We finally talked my dad into letting someone come in for 4 hours a week to wash my mom's hair. A housekeeper was not allowed, so I would clean the house in the middle of the night. It was a crazy time. After my mom had a stroke and started wandering, and I happened to be there one weekend to phone the ambulance, she was not allowed to go back home. I have never seen my dad cry but he broke down when the case manager told him mom needed to be placed in a home. After three weeks in a hospital, she was placed. In the home she was placed in she lived in a geriatric chair I thought just during the daytime. I found out that she was not put into her bed at nighttime, she was kept in the geriatric chair for 24 hours a day with straps put around her so she did not fall out. As an advocate I had this changed and she was put into bed at nighttime. When I would visit, I would remove the straps so she could move her legs. It was awful to see my mom in this state and I became a friend to her. She did not reconize me as her daughter anymore. My dad visited everyday and sat with her all day, even if mom did not reconize him. She called him the old man or dad. At the time, our family was so focussed on the care for mom, we did not realize how dad's health was deteriorating. He had a cathetor as he had surgery on his prostrate, so now home support was involved with dad. The cathetor was causing a lot of problems, lots of trips to the hospital for bypassing, lots of infections and this went on for 10 months. Mom passed away in August 2007 in an acute care ward in a hospital. I stayed with her for a month every day giving her the care she needed as hospitals are not equipped to deal with alzheimers patients. After mom passed away in the hospital in Aug. 2007, we started to realize that dad was not taking his medication properly and he was now forgetting lots of things. Dad still had his drivers license and in October 2007, drove me, his dog and himself off a mountain and we went down 200ft. rolling over a lot of times before stopping on a small rock. Dad broke his back in two places and I and the dog walked away from the accident with nothing wrong. We were very lucky. Now besides everything else we had to deal with, we now had to deal with insurance claims as well as caring for dad who we still did not have a diagnosis on. My brothers and I took turns when dad was released from the hospital sleeping overnight at dad's as we felt he needed this support. He was referred to geriatrics mental health who diagnosed dad with dementia. A family decision to keep dad in his house (as that is his wish) has caused lots of stress between the siblings.

Update now: After two years of having family work parties to get the house in shape again...new roof, landscaping, and trees cut down....we have the house in great shape. We have two wonderful caregivers who care about our dad, take him to the dayprograms during the week and we are still committed to keeping dad in his house for as long as we can. It is an emotional roller coaster with financial strains on everyone, I travelling from squamish to Langley every 2nd weekend, my two brothers (taking dad to appointments) and cutting an acre of grass, but we are trying to make the best of it. Losing one parent to alzheimers and now because dad tried to care for mom, we will be slowly loosing dad to dementia.....

The Issues: Hospitals need to have at least basic care for alzheimers and dementia patients and not have them sit in a chair on display in front of the nursing station.
Home support: Needs a better system to train staff on issues of alzheimers and dementia patient care. We are a family that advocates and fights for appropriate care for our dad, so because of this often find ourselves feeling burnt out. You should not have to fight or supervise home support to provide basic care
Government: Needs to provide a fair system for caregivers (family) that our caring for their parents financially and emotional supports put in place.

My Mom who was the sweetest, most loving woman I've ever known was diagnosed with Alzheimer's in 1998 at the age of 80. My Dad looked after her wonderfully until it got to be just too difficult. He couldn't make the decision to put her in a nursing home and asked my sister, brother and I to look after it. It was the saddest day when we moved her to a nursing home and they were separated for the first time in their 68 years of marriage. I had rarely seen my Dad cry but after they were separated he cried all the time. He missed his sweetheart so much! One of us would pick our Dad up every day and take him to the nursing home where he would spend the day with my Mom and then we'd pick him up and take him home at night. He was so lost without her and wanted to go and live with her there. He said he wanted to reach out at night and get more than just air. We put in an appeal to Home Care on campassionate grounds because he was only panelled at a Level 1. We made a video of our parents, of Dad crying when he talked about how much he missed her and asking whose idea was it to separate them. Then we videotaped Dad walking into the nursing home to visit her and Mom coming running with her arms open saying, "darling" as she threw herself into his arms. The Home Care Coordinator said there wasn't a dry eye in the panelling room. They accepted our appeal and Dad moved into a room with Mom soon after. Unfortunately, she started having seizures then and died 3 weeks later. Dad was devistated! My Mom died on Thanksgiving Day in 2008 and he still misses her terribly. He is 92 and still in the nursing home and he is suffering with dementia and sometimes forgets what happened to his sweetheart. When he asks where she is and we say she died he gets so upset. It breaks our heart every time we go and visit him. Alzheimers has hit our family hard as I know it has hit so many others. I pray that they find a cure soon because it is such a terribly sad disease. We lost our Mom long before she died and now we're slowy losing our Dad.

It is hard to say good bye to my parents. The only thing I can think of doing is to remember her laughter. And continue on what was her avocation. My mother is an incredible person. She was able to survive the war as a teenager.

I cannot believe that we started this journey in 1995 when my mother called me to describe a bizarre phone call she had received from my step-son. We were confused but thought it might have been a prank call. Little did we know it was the beginning of a long slow slide into vascular dementia. A year later I had taken over the leadership of a mental health team that works with seniors who have complex mental health and physical health problems. Understanding the symptoms of dementia I began to recognize the problems my mother was having in a new light. When my son-in-law saw my mother driving down the wrong side of the road near her home for the second time he called me. She was also having more and more difficulty paying bills, hearing voices in her mattress, isolating herself from family and neighbours. She became more irritable and had increased difficulty sorting through day to day administrative tasks. She stopped painting and dancing...things she had always loved. She had been single much of her life and very social. Now her world was shrinking daily. I called a colleague who managed the same program I did but in my mothers community. I asked if she might do a home visit to assess my Mum's situation. She thought she was doing quite well but would check back with her next year! Next year came and went without a follow up visit. I called one of the two psychogeriatric physicians in the Okanagan area and asked for a consult. By now, Mum was losing a lot of weight because she "forgot" to eat. She had also had several bouts of 'stomach flu' which occurred after she ate spoiled food....she insisted their was mold in it and that was like penicillin. The consulting physician ordered a CAT Scan and called her in. I had to invite myself because no one called me to go with her to the appointment, a 30 drive from her home. He called me in after talking with my Mum to say, "well, her brain looks pretty good although her carotid arteries are somewhat blocked." I then shared the behavioural changes family members had seen, the difficulty she had paying bills and sorting out anything with the bank, the taxes, the changes in driving in her little town. The physician looked very surprised and said, "oh dear, sounds like there could be some early stages of dementia occurring." He suggested we monitor her at home and come back in 6 months to see him. So much for information and support. Within a year, she could barely function on her own and we moved her closer to us. She did not want to move into an Assisted Living facility and wanted to live on her own. For a year, I went to her new home twice a day. She continued to deteriorate. She was a smoker and during one visit, she lit up a cigarette in the house, which she usually did not do if guests were there. I told her I would take my dog for a short walk and be back in a minute. When I returned there was a cloud of foul smelling stuff in the air of the apt. I started to cough and asked what was in the air. She told me, "just an air freshener, because I know you don't like cigarette smoke." I asked to see the air freshener and she brought me a can of WD40!" She told me she used it all the time. Thank goodness, her propane fireplace did not come on and that she didn't light up another cigarette! I called the Community Care Nursing Program and after her assessment she told me my Mum needed to be in a facility asap. I talked with the family and my Mum and decided to put her name on the wait list. It was six months before there was an opening for her. She had a lovely apartment in an Assisted Living facility. She loved it and I was delighted.....until, the staff found evidence of her smoking in her room. Everything changed. The not for profit group who ran the place insisted on "case conferences" where they would discuss this "problem" in front of my Mum and make her sign a contract saying she wouldn't do this anymore. They put her through this three times as one of the staff said she "thought" Mum might still be smoking in her room. I discussed the process they were using with the Manager as by that time Mother could not understand what it was all about because of her dementia. She only took one message away, "they don't like me or want me here." I tried to tell the Manager that these 'contracts" were not legal as my Mother was not legally capable of signing a document like this and understand what she was signing. However, shortly after I had a phone call from the Manager telling me they had decided to evict my Mother from the premises as they thought she had smoked in her room again. They had no evidence of her smoking in her apartment after the first incident. My Mum was adamant that she did not smoke in her apartment anymore and none of us had found any evidence either (we do not smoke). However, they wanted her out and told us they would give us one day to have her move! I got angry and told them it would take at least two weeks to get movers lined up. They agreed to give me more time to organize the move as I threatened to call the media and my lawyer. Prior to this, I had asked several times to have her family physician and the consulting physician from the geriatric mental health team present at a care conference where we could determine how to deal with this issue in a more thoughtful way. This never happened. No one discussed what other care would be appropriate for my Mother. Complex care was not even mentioned. Not by the Mental Health team, not by the Care Coordinator for the non-profit body, not by the Manager or the Community Care Nurse. We moved my Mother into our home and looked after her for a year a half as we knew that as long as she was a smoker this problem would evolve again. And this long winded story is just the beginning of my journey as her caregiver. I cannot believe how everyone abandoned my mother during that time. She lived with us for a year and a half and cried the day we moved her because she didn't understand "why they don't want me there." She had to say goodbye to all the friends she had made which broke everyone's heart. Later, we found a new physician who was wonderful with her and who actually assisted her to stop smoking at 83 years of age. However, after a year and a half we were worn to a frazzle as Mum had more and more difficulty mixing up reality with paranoid delusions. She fought constant bladder infections with resulting deliriums, was very anxious and agitated during the day and would wake us up at night being confused about where we were. We live in a rural area and only received 4 hrs a week of respite (1 hr. had to be deducted to cover staff travel time). She eventually attended a day program instead which was 25 kms from our home two days a week for 4 hrs a day. Barely enough to time for us to get groceries, have a short lunch, drive back and forth to pick her up. It was very inadequate but we took it. We made the agonizing decision put her on another wait list but for complex care this time. Another six months went by and a bed came up an hour and a half drive from where we live. If we didn't take it, we would likely have to wait another six months. We took it and now drive back and forth once a week and talk to her on the phone at least once a day. While the staff are mostly great with her, I do not see adequate recreation staff or social work back up for behavioural problems and my Mum feels like she is jail. It's the nights I worry most about now as my Mum fell two weeks ago in the middle of the night and was on the floor for two hours with a fractured pelvis. There are two staff on for nights who look after 40 residents. The first thing the nurse checked for when I Mother was brought back to the facility to heal was whether or not the doctor had left an order for Ativan! She is on morphine during the day and they want to use morphine to calm her fears at night. I had to intervene the first night back as they had taken away the controls for the hospital bed, lowered her bed so she couldn't reach a light switch and draped the "call button" cord across her body to pin on the other side and she had already had it wrapped behind her neck. No one wanted to assist me and in fact, I overheard one staff tell another staff, "that crazy daughter is back again!" I almost broke out in tears. I wanted to wrap my Mother up in a blanket and carry her out to my car and take her home. But I can't even do that with her injury. In addition, my husband has had two small strokes since this all began and my fear is that he may be facing the same destiny....who will help us. Our children live a province away, have very busy lives and we are it. Sometimes, I feel like the Velveteen Rabbit....with bald patches and one eye. Worn out by loving and caring for family when they need care and then tossed in the garbage heap.
This country desperately needs a National Dementia Care Policy and Strategy. Many other countries have done this and not gone bankrupt. Why can't we be proactive instead of sitting around blaming the seniors for draining and straining the health care system. We need to focus on creative solutions based upon evidence based research rather than focusing only on the economics of dementia care.

Alzheimers is a devastating disease at any age but if your parents are in their 70's, 80's or 90's it is nothing like the awful impact of one's spouse developing the disease in their 40's or 50's. First of all there is the $ problem. These people have not even reached retirement age yet, let alone been on their pensions for 10 or 20 years. My dear husband was 57yrs. old when diagnosed. He, of course, had to retire from his job, he was a very skilled carpenter, I worked in a Bank and in 2004 when he was 61 and I was 59 I had to retire from work completely to look after him as he could no longer be left alone. I enquired and was told there was no type of funding available to me as he wasn't considered 'terminal' - so tough.
The support group was great and through them I learned a lot from other people and I applied for home support and this helped me a great deal. Also Netcare were fabulous and took care of my husband for a few hours 3 days a week and gave me a little bit of a much needed break. I also took advantage of Respite Care, something I thought I would never do but I had a sick Mum in England and this gave me a chance to visit and see her whenever I could. My Mum passed away at the age of 99 and it really upsets me to say this but she was in better shape mentally than my husband at 66.
We had to use our savings and our RSP's to live on. In Dec.2008 I very reluctantly had to let him go into care of the age of 65 where he was surrounded by so many elderly people and looked so out of place. Again, much more money needed to be spent and I still need a place to live so on top of all this stress you are suddenly supporting 2 homes through no fault of your own. I applied for the Involuntary Separation (whatever) but because I am not 65 yet and have no pension to supplement, it wasn't available to me. The fees are now going up again this month. It never ends. STRESSFUL to say the least. There really should be some kind of $ help for these people who give their all to look after a loved one, a very stressful job I might add, which causes many health problem for the Carer in the long run. My family have been a great help to me, supporting me and their Dad in every way possible but the caring doesn't stop when they enter a home as I (or a family member) go in every single day to feed,shave, groom and generally support my husband as there is never enough staff and they are always glad of your help. Something really needs to be done to help stop this terrible disease. I have made arrangements for my husband to be autopsied and research be done on him at UBC when the time comes - anything to avoid my family and other people going thru what we have all been thru' these past 10 years. It seems to me that the plaques need to be stopped before they start as nothing seems to help after they get a hold - no medication helped my Husband and we tried several different drugs which weren't even covered financially at the time. So here we were both unemployed, a ridiculous price for medications and this was not how we planned to spend our retirement. I really hope my point of view helps to shed some light on this major problem that is affecting so many people. I hope my input helps.