August 7, 2012
So I know my brother and I only brought our father to live at the assisted living facility on Saturday, but the guilt just won't go away. Maybe it's because when I called to talk to him on Sunday, he said he had just been sitting around next to some guy who was sleeping (I'm beginning to think that none of the residents even talk to each other at this place). Or maybe it's because he thought he was coming home with me when I visited yesterday. Or maybe it's because when I spoke to him today, he told me that "this place just makes me nervous." Or maybe it's because he was STILL dressed in the SAME shirt when I visited yesterday, as when we dropped him off there on Saturday (WTF?!?). It is not okay to pay a facility over $6,000/month (yes, you read that right) and not have your clothes changed on a daily basis, and it wouldn't hurt to have a little deodorant slapped on too. Grrrr. Anyway, the "maybe it's because..." list could go on and on and on.
I took today off from visiting so I could get some packing done around my house, as we close on a new house in 10 days! But I visited yesterday, as well as the day before. He definitely wants out of the place. He mentioned how he wished that he was "at the other place," which I assumed to mean his own house. I'm pretty sure he doesn't grasp the fact that we will be selling his home in order to have money to pay this facility. That fact alone makes me feel like I could throw up. He also kept asking me if he brought his bikes there. I believe he was thinking that they could help him escape if he had them. One thing that made me feel a *tiny* bit better is that he was out of his room each time I came to visit. The program director told me that he had participated in the sing along (which I'm sure he was more than horrified to do-he is definitely a shy guy and still knows what is going on while he's doing it). Of course, when I asked him if he had been signing with everybody, he said no. It's hard to tell what he is doing when I'm not there because every time I ask him what he has been up to, his response is, "I don't know." I wish I could be a fly on the wall.
I wonder what he is doing right now. If he were at home, he would probably be veggin' out, watching TV. The unfortunate thing is that we were told not many residents have TV's, due to the fact that they like the residents to be out of their rooms and socializing, instead of isolating themselves. Makes sense. But when you are one of VERY few people who are not in a wheelchair or don't use a walker, of course you want to isolate yourself because you don't fit in. He's a very young guy in a place full of elderly folks. My poor Dad. Anyway, I think one of the first things on our to-do list is to get him a flat screen TV. Socializing will come with time, for right now, I'd just like to make sure he's comfortable. And at least when he's watching TV, he's not bored..like when he's sitting in a room full of people who don't speak. One other thing that made me feel again just a *tiny* bit better, was the fact that when I was about to leave, I was talking to another resident (I guess when you bring a super adorable child in..aka my son, they finally find their voices) who said to my father that she has a TV in her room that she never uses. She said he was more than welcome to use it anytime she was not in her room, and then she brought us into the room to showed it to us. That really meant a lot to me that she did that. Not that either of them will remember.
I plan on visiting tomorrow so I hope that his anxiety has lessened a bit, that he's made a few friends, and that he's wearing a different shirt...
Tuesday, August 7, 2012
Sunday, August 5, 2012
The hardest thing I've done in my life..
August 5, 2012
Well, I've never blogged before so bare with me here...
Let me take a minute to introduce myself. My name is Katie and I am currently a stay-at-home mom to a beautiful and very fun 18 month old boy. I was born and raised on Cape Cod and currently reside here with my husband, son, and many other family members. I am the daughter of 2 loving parents who divorced when I was 14 or so (they separated a few years before they divorced). Now 27, I have long since gotten over their divorce but I am still dealing with a HUGE family issue- at age 62, my father has alcohol induced dementia.
I struggle with where to begin on this crazy topic which has consumed my life many times over the past few years. I suppose I'll start here: My father is and was always the nicest guy you could ever meet. He just had nothing but absolutely admiration for his 3 kids and would do anything in the world for us. I don't think there's a single person that he has ever come across that could think of a bad thing to say about him. He's a sweetheart. And an alcoholic.
Since I was little, I can recall my Dad drinking-just beer, nothing hardcore. His drinking never seemed to be a problem, he just liked to have a beer while watching TV or whatever. It wasn't until after my parents separated (when I was in middle school) that I think he began drinking more and more..but it was hard for any of us family members to tell because my dad has ALWAYS been an in-the-closet drinker. He was good at hiding it-he never drank in excess around us kids and he hid his empties pretty well (or kind of well..until one of us looked under the couch for something..). In high school I was definitely naive about his drinking. I still don't quite know if I was in denial about it or if I really didn't think he was an alcoholic (because again, I hardly ever saw him drinking-although at this point, I often saw beer cans). Instead of saying, "Hmm..maybe my dad has a drinking problem considering he's always passed out around 8pm," I was saying "Everybody come over to my house because once my dad passes out, we can drink in my room." I guess it's just the typical high school mentality, but God, I could kick myself in the ass now for thinking like that.
Well, things gradually got worse and worse over time. Dad was becoming increasingly forgetful (due to his drinking) and sadly, I was pretty embarrassed by some of the things he would do. He'd forget where I spent the night and would call somebody else's house looking for me or he would tell people I wasn't home when I was (he truly thought I wasn't though). One of the breaking points for me was when he showed up late to my cousin's wedding and strolled in right as the bride was supposed to walk down the aisle. Everyone is so excited to see the beautiful bride and who walks in but "Buzzy" (that's his nickname). ::Sigh:: As my own wedding was approaching, I was scared to death that my Dad would be walking me down the aisle completely wasted. It got to a point where my whole family felt that if things didn't change, Dad wouldn't be living for more than a couple more years, so we set up an intervention (yes, a real one like the TV show).
The intervention was terrifying, but my Dad agreed to go to Gosnold (for those of you who may not know, that is a rehab facility). He spent about a week there detoxing and went on to spend a little more time at Gosnold in Cataumet. It wasn't easy but we thought he might come to his senses..especially after hearing all of our letters that we wrote to him. After he got out, nobody wanted to leave him home alone at his house for fear that he would drink (at this point he was living alone because all of his children had moved out). It wasn't long until we started finding empty cans again...and our hearts were completely ripped out and stomped on. Once he started drinking again after detoxing, his brain was crazy messed up. We had been told by workers at Gosnold that if you drink for many years and then detox, then start drinking again, it can leave you worse than how you started..and they weren't joking. My dad was a mess.
I'm not sure if it was at this point or later when the diagnosis came about. I can tell you that my Dad was probably only 60 when he was diagnosed with alcohol induced dementia. Over the past few years, there have been multiple episodes that have landed my father in the hospital. When it came time to leave at the end of every stay, the doctors who were discharging him never felt comfortable having him go live at his house alone. They didn't want him cooking (with his forgetfulness..luckily the doctor took away his license a while back) or being a hazard to himself in any way. We were advised that he would be released only if there were people to look after him. This meant that between my brothers and myself, and my father's sisters and brother, we would have to take turns spending time with Dad day and night. Can you imagine how hard it is getting back from your honeymoon and having to share a 2 bedroom house (mind you, one room was an office without a bed in it) with your father (or father-in-law, in my husband's case) for over a month?? It wasn't easy. Not in the least.
The most recent hospital episode happened this summer at the end of June 2012. My father had been frequenting the Senior Center in one of the towns on the Cape and they had become increasingly concerned about his mental health. They had asked my brother to come get him and my brother brought him to the ER to make sure he hadn't had any mini strokes. The cat scans showed no strokes. They kept him in the hospital for a few days (thanks to my brother) so we could have some time to figure out where to go from there. Again, the doctor's felt that he needed 24 hour care when he got out. So we all sucked it up and took turns shuffling him from house to house and couch to couch again for the past month. I could not fathom a worse time to be doing this, as I am currently pregnant and looking after my 1.5 year old, in the process of buying a new house and renting ours out, and trying to find a job. I love my Dad to death, but taking care of him can be a full-time job, and when your plate is already more than full, that's not okay, so we did our best to find a good solution to help our Dad.
The truth is: there are no good solutions. My dad is so young (only 62) that he falls into this funky category of not being old enough to qualify for much help and not being considered for certain state-aided senior residences. We tried to find a live-in companion to live rent free and help take care of him, but we soon realized the extent of his dementia and knew it wouldn't work without paying that individual. Mind you, my father has VERY (I can't stress that word enough) limited income, as he was forced into early retirement. He is not on Medicare yet, but we are in the process of getting that done). We decided that assisted living was the way to go, even though they are private pay and at most, my Dad will probably only get to live somewhere for 2 years.
We settled on an assisted living facility on Cape. They have a memory care unit where the residents are locked in for their safety. Yesterday we moved my dad in. I can tell you that I have never in my life felt the guilt that I felt when I walked out of that building. He shouldn't be there. He's only 62 years old. The next youngest person is 76-a 14 year difference. I'd say there are about 3 other people in the unit who do not use a walker or wheelchair. Everybody looks ancient compared to this man who is in wonderful physical shape but is slowly losing his brain. It killed me. Absolutely killed me to leave him there. It was the hardest thing I've ever done in my life. I bawled my eyes out when I walked out of the building. Upon getting in my car in the parking lot, I immediately called my brother who felt the exact same way. Luckily the contract is only 30 days so if need be, we can pull him and try to find availability at another facility if it's really not working out. And family is allowed to take him out of the facility at any time and bring him to the beach, or to dinner, or whatever. It's comforting to know this, but I'm scared to death to do it for fear that when we pull back in, he will freak out and tell me he is NOT going back there. We toured another facility where we would have liked to have seen him go, but it is over $1500 more a month. I think that my brother and I feel that that would have been a better choice for him though, regardless of cost.
I briefly visited with him today and things seemed a tiny bit better. I was able to leave without crying, but I can't stop thinking about what he's doing right now. I just hope his anxiety calms down quickly and he gets into a routine and makes friends soon (perhaps ones that talk? These people don't seem like a very lively bunch). I want him to feel comfortable and to know that he can call and talk to us at any time. I want him to know that his family loves him so much and we only want him there for his own safety. I wish more than anything that it wasn't too hard for us all to take him in, but at this point in our lives, we all have young families and it is too much. We did what we thought was right, but we still feel like we completely failed. I am constantly trying to remember this: "Sometimes the hardest thing and the right thing are the same." I know this will get easier....eventually.
My hope with starting this blog is to find others out there dealing with the same situation. I know there must be others out there who have had a parent or someone they love diagnosed with early onset dementia. Where are all the resources for people who are diagnosed at such a young age?? I want to connect with others on this topic and maybe someday in the future, I can even help guide somebody through this EXTREMELY difficult time.
Well, I've never blogged before so bare with me here...
Let me take a minute to introduce myself. My name is Katie and I am currently a stay-at-home mom to a beautiful and very fun 18 month old boy. I was born and raised on Cape Cod and currently reside here with my husband, son, and many other family members. I am the daughter of 2 loving parents who divorced when I was 14 or so (they separated a few years before they divorced). Now 27, I have long since gotten over their divorce but I am still dealing with a HUGE family issue- at age 62, my father has alcohol induced dementia.
I struggle with where to begin on this crazy topic which has consumed my life many times over the past few years. I suppose I'll start here: My father is and was always the nicest guy you could ever meet. He just had nothing but absolutely admiration for his 3 kids and would do anything in the world for us. I don't think there's a single person that he has ever come across that could think of a bad thing to say about him. He's a sweetheart. And an alcoholic.
Since I was little, I can recall my Dad drinking-just beer, nothing hardcore. His drinking never seemed to be a problem, he just liked to have a beer while watching TV or whatever. It wasn't until after my parents separated (when I was in middle school) that I think he began drinking more and more..but it was hard for any of us family members to tell because my dad has ALWAYS been an in-the-closet drinker. He was good at hiding it-he never drank in excess around us kids and he hid his empties pretty well (or kind of well..until one of us looked under the couch for something..). In high school I was definitely naive about his drinking. I still don't quite know if I was in denial about it or if I really didn't think he was an alcoholic (because again, I hardly ever saw him drinking-although at this point, I often saw beer cans). Instead of saying, "Hmm..maybe my dad has a drinking problem considering he's always passed out around 8pm," I was saying "Everybody come over to my house because once my dad passes out, we can drink in my room." I guess it's just the typical high school mentality, but God, I could kick myself in the ass now for thinking like that.
Well, things gradually got worse and worse over time. Dad was becoming increasingly forgetful (due to his drinking) and sadly, I was pretty embarrassed by some of the things he would do. He'd forget where I spent the night and would call somebody else's house looking for me or he would tell people I wasn't home when I was (he truly thought I wasn't though). One of the breaking points for me was when he showed up late to my cousin's wedding and strolled in right as the bride was supposed to walk down the aisle. Everyone is so excited to see the beautiful bride and who walks in but "Buzzy" (that's his nickname). ::Sigh:: As my own wedding was approaching, I was scared to death that my Dad would be walking me down the aisle completely wasted. It got to a point where my whole family felt that if things didn't change, Dad wouldn't be living for more than a couple more years, so we set up an intervention (yes, a real one like the TV show).
The intervention was terrifying, but my Dad agreed to go to Gosnold (for those of you who may not know, that is a rehab facility). He spent about a week there detoxing and went on to spend a little more time at Gosnold in Cataumet. It wasn't easy but we thought he might come to his senses..especially after hearing all of our letters that we wrote to him. After he got out, nobody wanted to leave him home alone at his house for fear that he would drink (at this point he was living alone because all of his children had moved out). It wasn't long until we started finding empty cans again...and our hearts were completely ripped out and stomped on. Once he started drinking again after detoxing, his brain was crazy messed up. We had been told by workers at Gosnold that if you drink for many years and then detox, then start drinking again, it can leave you worse than how you started..and they weren't joking. My dad was a mess.
I'm not sure if it was at this point or later when the diagnosis came about. I can tell you that my Dad was probably only 60 when he was diagnosed with alcohol induced dementia. Over the past few years, there have been multiple episodes that have landed my father in the hospital. When it came time to leave at the end of every stay, the doctors who were discharging him never felt comfortable having him go live at his house alone. They didn't want him cooking (with his forgetfulness..luckily the doctor took away his license a while back) or being a hazard to himself in any way. We were advised that he would be released only if there were people to look after him. This meant that between my brothers and myself, and my father's sisters and brother, we would have to take turns spending time with Dad day and night. Can you imagine how hard it is getting back from your honeymoon and having to share a 2 bedroom house (mind you, one room was an office without a bed in it) with your father (or father-in-law, in my husband's case) for over a month?? It wasn't easy. Not in the least.
The most recent hospital episode happened this summer at the end of June 2012. My father had been frequenting the Senior Center in one of the towns on the Cape and they had become increasingly concerned about his mental health. They had asked my brother to come get him and my brother brought him to the ER to make sure he hadn't had any mini strokes. The cat scans showed no strokes. They kept him in the hospital for a few days (thanks to my brother) so we could have some time to figure out where to go from there. Again, the doctor's felt that he needed 24 hour care when he got out. So we all sucked it up and took turns shuffling him from house to house and couch to couch again for the past month. I could not fathom a worse time to be doing this, as I am currently pregnant and looking after my 1.5 year old, in the process of buying a new house and renting ours out, and trying to find a job. I love my Dad to death, but taking care of him can be a full-time job, and when your plate is already more than full, that's not okay, so we did our best to find a good solution to help our Dad.
The truth is: there are no good solutions. My dad is so young (only 62) that he falls into this funky category of not being old enough to qualify for much help and not being considered for certain state-aided senior residences. We tried to find a live-in companion to live rent free and help take care of him, but we soon realized the extent of his dementia and knew it wouldn't work without paying that individual. Mind you, my father has VERY (I can't stress that word enough) limited income, as he was forced into early retirement. He is not on Medicare yet, but we are in the process of getting that done). We decided that assisted living was the way to go, even though they are private pay and at most, my Dad will probably only get to live somewhere for 2 years.
We settled on an assisted living facility on Cape. They have a memory care unit where the residents are locked in for their safety. Yesterday we moved my dad in. I can tell you that I have never in my life felt the guilt that I felt when I walked out of that building. He shouldn't be there. He's only 62 years old. The next youngest person is 76-a 14 year difference. I'd say there are about 3 other people in the unit who do not use a walker or wheelchair. Everybody looks ancient compared to this man who is in wonderful physical shape but is slowly losing his brain. It killed me. Absolutely killed me to leave him there. It was the hardest thing I've ever done in my life. I bawled my eyes out when I walked out of the building. Upon getting in my car in the parking lot, I immediately called my brother who felt the exact same way. Luckily the contract is only 30 days so if need be, we can pull him and try to find availability at another facility if it's really not working out. And family is allowed to take him out of the facility at any time and bring him to the beach, or to dinner, or whatever. It's comforting to know this, but I'm scared to death to do it for fear that when we pull back in, he will freak out and tell me he is NOT going back there. We toured another facility where we would have liked to have seen him go, but it is over $1500 more a month. I think that my brother and I feel that that would have been a better choice for him though, regardless of cost.
I briefly visited with him today and things seemed a tiny bit better. I was able to leave without crying, but I can't stop thinking about what he's doing right now. I just hope his anxiety calms down quickly and he gets into a routine and makes friends soon (perhaps ones that talk? These people don't seem like a very lively bunch). I want him to feel comfortable and to know that he can call and talk to us at any time. I want him to know that his family loves him so much and we only want him there for his own safety. I wish more than anything that it wasn't too hard for us all to take him in, but at this point in our lives, we all have young families and it is too much. We did what we thought was right, but we still feel like we completely failed. I am constantly trying to remember this: "Sometimes the hardest thing and the right thing are the same." I know this will get easier....eventually.
My hope with starting this blog is to find others out there dealing with the same situation. I know there must be others out there who have had a parent or someone they love diagnosed with early onset dementia. Where are all the resources for people who are diagnosed at such a young age?? I want to connect with others on this topic and maybe someday in the future, I can even help guide somebody through this EXTREMELY difficult time.
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