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HomeMy WebLinkAboutThe Times Advocate, 2006-04-05, Page 1212 Exeter Times—Advocate Wednesday, April 5, 2006 Alzheimer's disease and the impact on a family By Sharon Gibson SPECIAL TO THE T -A (Editor's note: The fol- lowing story was written by Sharon Gibson of Centralia, whose mother Violet Knee died March 22 after a battle with Alzheimer's disease. Sharon wrote this story in an effort to help other people understand the disease.) CENTRALIA — Violet was born in Newfoundland Oct. 15, 1939, to Samuel and Lilly Reid of Chapel Arm, Trinity Bay. Violet has five brothers — Harold (Laura), Doug (Eilleen), Wallace (Linda), Sam (Jackie), and Mundon (Glennis) and one sister Audrey (Peter), all of Newfoundland. Violet married Percy Knee Dec. 21, 1956, in Newfoundland and then came to Ontario in 1957. They had four children. Sharon (Larry) , Perry (Nina), Wallace and Darlene (Bill). They have nine grandchildren — Pete, Tina (Christian), Crystal (Ian), Ryan, Justin, Jeremy, Jeffery, Jessica and Jacklyn and one great grandson Merrick. In August 2002, Violet was being treated for some depression as she seemed to cry at the least little thing and had some confusion. Her treatment did not seem to help so in September 2002, we took mom to see her doctor with the meds he had put her on and explained how she was getting worse instead of getting better. We discussed what she was feeling and how she would get confused about a lot of different things and was getting forgetful of where she would put things and was still depressed. It was then that her doctor did a mini mental test and made an appointment for mom to have a CT scan done. It was in October 2002 that we got the diagnosis that mom had Alzheimer's. I will call Alzheimer's (AD) for the rest of this story. I can still remember the reac- tion on her face when the doctor told her she had AD and started her on a drug called Exelon. I think back and know that the hardest thing about all of this is that mom still had her mind and her faculties and because her own mother had been diagnosed with Pick's disease (another form of AD) and died seven years after, at the age of 72, and that mom had seen and remem- bered what her own mother had gone through and realized she too was going to go through the same thing and made her own diagnosis even hard- er. Things were up and down for the first year. Mom would not stay alone and got restless even with someone with her and seemed to get agitated a lot of the time and would cry for no rea- son and just had a hard time accepting she had this disease. In July 2003, mom went to specialist Dr. Borrie in London at Parkwood Hospital, who was com- passionate with his patients and did not rush them through the appointment. He really seemed to care about his patients. It was then that he started mom on a new study he had available. There was a 50 per cent chance mom would either be on an actual drug or a placebo pill. She started this study in September 2003. The study was for one year and included nine study visits in that year where they would do a complete physical exam such as an ECG, respiration and blood pressure, neurolog- ical exam, weight, height, heart rate, blood and urine samples and also special test and question- naires on her behaviour, cognition (attention, con- centration, language, memory, reasoning and motor skills). The study team (Julia Gieger) also provided all of the trial drugs free of charge to mom. Mom did not last the full year. She was good about the first half of the study but seemed to be getting gradually worse as far as the agitation, concentra- tion, language and memo- ry. When we started the study her memory mini test results were 20/30 in July 2003; then in November 2003 they were 23/30 and in March 2004 they were 16/30. The last one in July 2004 was 12/30 and we all noticed a huge decline in mom for that period of the year. Finally mom did not want to go anymore so we stopped the study as she was getting too upset and restless to take anymore. It was around Christmas 2003 that we really noticed a big difference in mom's behaviour. She seemed lost and would pace around her house and ours, having a lot more difficulty with names and a lot more agi- tation. It seemed that she had declined more than previously. There seemed to be a steady decline in mom's condition month after month. She became fearful and forgetful of what and where she was a lot of the time. She forgot how to use the stove and would forget to put soap in the water to wash the dishes. She would forget whether or not she had eaten or taken her medication. She could not use the microwave any more without help. There were so many things she could not comprehend anymore without help and assis- tance, even getting dressed and bathing. We went from October 2004 to January 2005 with bouts of times that mom would get really agi- tated, confused, disorient- ed and even at times near the end she did not know my father, her husband at all at times. She would relate to him as 'the other guy.' S She would eventually click out of it and know who he was and then be upset she had done this. Sometimes it would take a short time for her to snap out of it and then sometimes it would take her a lot longer to snap out of it. No one knows how hard it is to convince someone that they know someone or even that they are married to that person if they can not remember who they are. We had mom attend an adult day centre in Exeter two days a week to get her out of the house and they would pick her up and provide her lunch and bring her home again and to give us a break for a day or two and she real- ly seemed OK with this but it did not last. After about six months it got to where she would make herself sick or just so upset to have to go that we stopped sending mom as it just wasn't worth getting her so upset to go. We also had a volunteer from the Alzheimer Society come in and take mom for a walk one morning a week and again mom really enjoyed the time with her but again this did not last too long. Please know that these programs are avail- able; just contact some- one from the Alzheimer Society and they will assist you with programs and help available for you. Over the past four years we have seen a lot of dif- ferent stages of AD with mom and have had to learn how to deal with each of them in a differ- ent way. You have to remember that the per- son with AD is living in a totally different day and time than we are and you have to be able to try to be a part of that time in their lives even though most of the time we have no idea what they are talking about. In October 2004 we put mom in the nursing home in Ailsa Craig for a 10 -day respite stay as we felt it best for her and to give everyone involved in her care a break. We felt guilty for doing this as we had to admit we just could not give mom the proper care she needed and deserved. After the 10 days we brought mom home in hopes of keeping her "Violet's Crew," a team walking for the late Violet Knee during the Alzheimer Society's Walk for Memories in January, received the Corporate Challenge Plaque for the team who raised the most money, $ I ,476. Presenting the Corporate Challenge Plaque is events co-ordinator Theresa Wilson, left, and Just ForYou vol- unteer Jean Courtice, right, who had weekly visits with Violet. Receiving the plaque are Knee's great grandson Merrick Premont and Knee's daughter Sharon Gibson. (photo/submitted) home but about one week later, we decided it was time to get mom into a permanent facility. Again this was probably the hardest decision we had to make as it meant that we all agreed that mom needed 24-hour care and that we could not provide this for her. It has been a little over a year now since mom went into the Exeter Villa and we have gone through a lot of difficult and very trying times since then and it is not easy to go and leave your loved one there when they cry and want to go with you each time you leave, but you have to remember that they are getting the 24-hour care they need and medica- tions and meals at the right times and that most of all they are safe. Mom has really declined since she went into the Villa. Now she is in a wheelchair all the time with a neck pillow to hold her head straight as she is unable to do this and has to be fed her meals and has to be bathed and dressed by someone each day. Mom does not talk much anymore, just answers yes or no most times. She has lost the ability to walk or even stand on her own now and has to have her food pureed to eat. Mom has even lost most of the abili- ty to use her arms. They say that this is the later part of AD, and she has even stopped eating and drinking for days and then will eat and drink again, which is also another part of this dis- ease. In February of this year we made the decision to take mom off all of the medications she has been on, as there did not seem to be any point in contin- uing with them any more as we felt they were not helping her. We could not see giving her all of these drugs as they seemed to make her slow down even more than she was. This was a tough decision to make especially not knowing if it was the right decision. But so far things are going pretty well and there has been no adverse reaction for doing it. It is now March 22 , and mom has not eaten or drank anything for six days and is slipping away really fast. The only good thing about this is that she is not suffering and is not in any pain, which is a big comfort to me and the rest of the family . We were told today that mom will probably not see this weekend and we are all OK with this but it still does not make it any easi- er. You get yourself pre- pared for this day to come but when it does and no matter how prepared you think you are, it is still hard to try to keep it all together. Today is March 22 and mom has deteriorated very quickly. Mom passed away peacefully at 10 minutes after four this evening with her family by her bedside. She did not suffer and now she will be at peace and we can all be thank- ful for that. Still it is hard on the ones left behind but you have to remem- ber she is in a better place and she is safe. I will say that there will be a lot of times that we have felt that things could be better with her care but I know that the staff that work at these homes try their best to provide that care and it is not the same as if your loved one was still home and you were giving them the care but there comes a time with this disease that this is not physically or men- tally possible for you to do anymore and you have to trust our facilities to pro- vide this for you, for your loved one. Remember to stay informed with the staff about your loved one's care and everyday needs as they change so quickly. To sum this up all I can say is that you are not alone and that there are many others, even in your own community that are battling with this disease. And most important, remember that there is help out there for you and use this help before you get run down and the task of caring for your loved one becomes unbearable as I think this makes it even harder on you to try to bounce back and remember that you will not be any help to your loved one if you get sick. And last but not least, spend what quality time you have with your loved ones because no one knows just how long your loved one will have this quality time and try to make the most of your time with them whether it is five minutes or five hours that you spend with them. I hope that our story will help someone out there to know that they are not alone. Last year was the first time that Violet's family members did the Walk For Memories. This year we did it again as a team and ended up being the top fundraising team. We just wanted to do something back for the Alzheimer Society and hope that some clay there will be a cure for this devastating disease. We know that it is too late for our mom but maybe not for some- one else's mom or loved one.