I Know Crazy http://blog.iknowcrazy.net Young Family Living with Dementia Sun, 16 Oct 2016 13:24:06 -0400 en-US hourly 1 https://wordpress.org/?v=5.3 My Best Friend http://blog.iknowcrazy.net/?p=132 http://blog.iknowcrazy.net/?p=132#respond Sun, 16 Oct 2016 13:24:06 +0000 http://blog.iknowcrazy.net/?p=132 Papa does not engage much in conversation and has extreme difficulty expressing his thoughts. It is comforting that he still has a sense of humor and because of short term memory loss I don’t need to come up with new material very often. The girls and Francine have their own shticks and we are able to keep him in the game as much as possible. Recently Papa friends from his youth have found him through FB. The stories that have been told and the feelings expressed have been so nice to hear and I can’t get enough. As a child, teenager and young man I would listen to him tell those stories and be totally captivated by them, he had that Irish gift for story telling. I remember most, but because of my own issues with memory, some have faded and it is so nice to hear them again. Below is an excellent article on communication and Alzheimer’s. Also make sure to go to the Facebook page I know Crazy for pictures, videos and conversations
http://www.alz.org/cacentralcoast/documents/3-Communicating_with_people_w_dementia.pdf

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Struggling with Assistance http://blog.iknowcrazy.net/?p=129 http://blog.iknowcrazy.net/?p=129#respond Fri, 07 Oct 2016 01:03:23 +0000 http://blog.iknowcrazy.net/?p=129 Since coming back from summer vacation getting consistency from home health aides has been an issue. We are now on third aide and things are working well, fingers crossed. It has been explained that many agencies have a high turn over rate and this is a normal problem.

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It has been Hard to watch http://blog.iknowcrazy.net/?p=124 http://blog.iknowcrazy.net/?p=124#respond Sat, 09 Jan 2016 16:12:11 +0000 http://blog.iknowcrazy.net/?p=124 Been a long while since updating my fathers (Papa) journey. Running around with the kids and Papa has kept us quite “crazy” around here. We have been able to lower his medication for delusions down to the minimum. He is no longer getting agitated and does not look to wander out of house. Unfortunately the dementia has taken his verbal skills away along with bladder control and eating solid foods. We have forged a new routine that is working and we try our best to keep him engaged in the world. As you can imagine watching the man you idolized reduced to this is very hard to accept. But with God’s help and our family and friends we are staying strong.

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Just one of the Pack http://blog.iknowcrazy.net/?p=77 http://blog.iknowcrazy.net/?p=77#comments Wed, 20 May 2015 23:51:15 +0000 http://blog.iknowcrazy.net/?p=77 One of the first things we did after moving in to our new home and life with Papa was to buy a dog. My father loved owning a dog, and I mean loved. We were in a pet shop and saw the cutest boxer, and he had the same birthday as me. Fate we thought! So we purchased the boxer and named him after my childhood pitbull, Mugsy. Mugsy right away would become my father’s favorite. Mugsy being a few month’s would learn real quick that my father was a big softy and would end up taking full advantage of him. He would run out of yard if my father opened gate the slightest. We spent the money and had him leashed trained , which would cut down on the running around neighborhood, but not on him suckering my father. For the first few years my father was pretty independent but as his dementia worsened we had to purchase cameras to see what was going on when we were not around. We soon found that Mugsy had become an negative issue. My father would interpret every move the dog made. If the dog got up he needed to go out, so every five minutes the door would open the dog would go out, this would effect the heating bill. He would walk around the yard and step in Mugsy droppings and not even be aware of it tracking it all over the house. If my father was eating, the dog ate half of his food, this explained my father being always hungry and why he would constantly be scavenging for food. This unfortunate routine continued until Mugsy passing from cancer last year. Knowing that a dog was a good companion there was thought to getting a new puppy, but we decided that it would just be to much. In doing research on dogs I did find that their are companion dogs for Alzheimer’s patients that would have been perfect in the earlier stages for my father. see article below https://www.psychologytoday.com/blog/canine-corner/201401/assistance-dogs-alzheimers-and-dementia-patients

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Failure to Prepare is Preparing to Fail http://blog.iknowcrazy.net/?p=111 http://blog.iknowcrazy.net/?p=111#respond Tue, 28 Apr 2015 00:02:40 +0000 http://blog.iknowcrazy.net/?p=111 In life being prepared is essential, but when care-giving for a person with dementia it is do or fail. If he is hungry, for example, it is difficult to keep him from getting overly agitated if you have to start on the fly. Preparing came natural to me but after living with dementia and the crazy turns it could present made planning go to a new level, especially when you add young children. I first began by always preparing a weeks worth of medication/vitamins for my father on Sunday and soon graduated to preparing a month in advance (two months to cover summer). Meals would always have to be ready to go, so weekends become cook for the week. As time would go on my fathers meals would become more difficult so meals had to be specific for his diet; low fat, low carbs and easy to chew. Having a food-saver is a must and has allowed us to prepare meals so during the week it is grab and heat up. As you can imagine, with running kids to after school activities during the week can become quite hectic so it is prepare or go crazy trying to do it on the fly.

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Keep Him Engaged http://blog.iknowcrazy.net/?p=107 http://blog.iknowcrazy.net/?p=107#respond Wed, 22 Apr 2015 00:39:29 +0000 http://blog.iknowcrazy.net/?p=107 During our first few years my father was very eager to pitch in around the house. This kept him engaged and gave him a feeling of worth. The key was to find tasks that he would be capable of handling. We would leave dishes in the sink, even though we had a dishwasher, leave baskets of clean laundry to fold and when he would wander upon them he would jump into the task. For almost 7 years this system worked until he started slipping into different stages of dementia. The first sign that he was starting to slip would be when one day he was out raking leaves during the fall, a chore he had happily done for years, when he stormed into the house yelling at me that he did not come here to work. I couldn’t help but laugh, which got him frustrated even more. I was able to redirect his anger and after explaining was not visiting but in fact has lived with us for many years we were both able to laugh. We began then to approach tasks for him much differently, shorter and monitored activities were now all he could handle. Any amount of time alone sent the mind spinning off.

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Got to Have a Carrot on a Stick http://blog.iknowcrazy.net/?p=100 http://blog.iknowcrazy.net/?p=100#respond Thu, 16 Apr 2015 23:55:40 +0000 http://blog.iknowcrazy.net/?p=100 After learning that reasoning with my father was pretty futile, he would argue the most simple requests, change clothes, take a shower, etc.. My father always had a sweet tooth and I learned that if I threw a “after you take a shower dessert will be served” or “after you change I have some candy for you”. This worked like a charm. I would have stashes of sugar free ice cream or candy ready to go. Most of the time he would forget that I had said that after he had done the task. It also came in very handy if he was getting agitated with the children playing or if he was caught in a question loop. Having a distraction ready to go for him is essential in dealing with those moments. He could be extremely upset that the baby was listening to his instruction, within five minutes of me distracting him with a treat he would forget what he was frustrated with. The only problem was that I had to then deal with little kids saying “what about me”. Not wanting them to learn that negative behavior was rewarded with candy was a bit difficult but we were very consistent with explaining that their Papa sometimes gets confused and that the candy helps. Raising kids in the house has been a bit challenging. My father is very found of children but is more like an older sibling that a grandfather. They have grown to understand and are our little helpers and as they have grown older and he has slipped more they have been able to assist even beter.

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One More Round http://blog.iknowcrazy.net/?p=92 http://blog.iknowcrazy.net/?p=92#respond Wed, 15 Apr 2015 01:23:05 +0000 http://blog.iknowcrazy.net/?p=92 “Fight one more round. When your feet are so tired that you have to shuffle back to the center of the ring, fight one more round. When your arms are so tired that you can hardly lift your hands to come on guard, fight one more round. When your nose is bleeding and your eyes are black and you are so tired that you wish that your opponent would crack you one on the jaw and put you to sleep, fight one more round — remembering that the man who always fights one more round is never whipped.” Gentleman Jim-James J. Corbett

Now the circumstances that make our situation unique is the age my father became disabled, 62 years old. When we began our care-giving of my father we had one child, a 2 year old daughter. Two years later we added another daughter and six years later our third daughter. When explaining my situation with my father to people I often get a how can you do that with children. Juggling little kids, my father and our jobs, which are both an hour from our home, is most challenging and quite frankly a bit crazy, but I know of no other way. As I stated in the MY Dad page, he dealt with a lot during his life and I can not imagine any other way because of his example. No matter how hard or crazy his life got he was always there and always took care of his family. I can not envision him being in a home and I want to show my daughters, by example like my father did, that you take care of your family. I know that the day may come when I can do no more for him and it becomes necessary for all that the next step be taken, but until then we will fight one more round.

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A New Routine http://blog.iknowcrazy.net/?p=86 http://blog.iknowcrazy.net/?p=86#comments Sun, 12 Apr 2015 18:51:59 +0000 http://blog.iknowcrazy.net/?p=86 It was clear that being home alone all day while we were at work was not the best thing for him. He would not be able to regulate his own diet and lack of human interaction, we felt, was the worse thing for him. I would come home and he would be confused and not his happy go lucky self. Not knowing what was available I went to the town Department of Aging. This was the best move yet. The help and guidance they provided would be invaluable. Since he was still very sociable we found a Senior Center in a nearby town that would feed him lunch for a small fee. We also found that the state would provide transport to and from. Perfect! Now to get him into a routine. We had to make signs that would tell him what was gong on and when to expect bus. The bus would pick him up and drop him off about an hour before I would get home. The first few years everything went smoothly. We would visit the center a few times a year and meet the people he was with during the day. As is the norm, most would be ladies in there eighties, who would look after my father, who was still relatively young for such a place at only 64. He would be his funny social self, asking the same questions everyday or saying the same funny quip with them. After a few years the routine would become so ingrain in him that when we would be on vacation during the year or away at our summer home in Maine he would be always be looking to get on a bus. We would be in the middle of the woods and he would be looking to wait for a bus. This is when he started to get a bit more aggressive and delusional. He would not let it go. We had to put signs up to try and shortcut him looking for a bus and sometimes he refused to believe there was no bus. We found that the best way to deal with this would be to quickly try and get him onto other things, let’s go for a walk, play cards, go outside watch grand-kids, play with the dog. This would be the best way to deal with many of his quirks, just needed to get him on another track. It does require pre-planning and quick thinking but is the best tact when dealing with this type of behavior.

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Got A Question http://blog.iknowcrazy.net/?p=80 http://blog.iknowcrazy.net/?p=80#respond Thu, 09 Apr 2015 22:51:12 +0000 http://blog.iknowcrazy.net/?p=80 During the first year the first thing that we had to address was the asking of same questions over and over. Patience could go so far and it would sometimes overcome us. We started writing out answers on a piece of paper. He would ask we would say just read the paper. We next purchased a laminator so we could put signs up with the answers of his most asked questions. This also helped greatly with times he was alone. We would strategically place them around the house. Put one by the front window with times we would be back from work, our phone numbers by the phone, the dogs feeding schedule by the dogs bowl, a hand drawn map of the neighborhood, one in the bathroom about where he was living etc… Again, he was still pretty good socially at this point and would be happy staying home with the dog relaxing. I would come home answer the same questions about what I did for a living and where I worked. I was determined to get him into shape so I would even send him to the store for something almost everyday with a simple map to and from. He would be more than happy to help rake leaves, mow lawn or shovel snow and after the first year his weight and diabetes were in check. For years our house and car were full of laminated signs and as time would pass we had to make bigger signs until it got to the point where stopping and looking at signs, no matter how big they were, no longer registered with him anymore.

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