I'm writing this as it happens. Today is not a good day. Those of you that know me well, may say that I never have "good days" .... that there is always something happening that makes it "not a good day". But that is wrong. I try to make every day, a good day.
One of our bigger high lites during the day is the Ellen Degeneres show. Marjorie loves it. Ellen makes her laugh. Marjorie thinks she's "naughty", and seems to relate to her sense of humour. I'll be honest, I do too.
I PVR Ellen everyday, so that I can have her on demand for Marjorie. Today, we have watched Ellen a total of two times. Number two is on right now. Even Ellen isn't working tonight. Normally our banter consists of Marjorie asking about Ellen's "partner".... Portia. I tell Mum her name, and no she is not part of the show, but she does make appearances occasionally. Marjorie asks if they are a couple, and then I explain, not only are they a couple... they are married too! Which then launches us into a whole conversation about same sex marriages and how they are mainstream now, but not recognized. If they are not recognized, they should be. Its a good banter.
but not today.
Ellen, Ellen, Ellen....... storm warnings during your show? Really? There are warnings running across the TV right now. You are speaking about Michelle Obama, and all Marjorie can speak about are the warnings running across the screen. The warnings are for regions not even REMOTELY close to us... but this cannot be explained.
Sit back, turn off Ellen, and switch to something that does not have a storm warning. I tried this, and Marjorie wailed to have Ellen back on the TV. The lessors of the evils was this.
So here I sit, watching Ellen, and trying to enjoy (for the second time), as I field constant questions about storm warnings, do we have candles, will the storm hit........ etc.
Sigh. Ellen: you failed me today.
Tuesday, October 26, 2010
To believe, or not to believe.... that is today's question.
Meg left yesterday. We had a great week. Well, at least I did. She's a great kid, as I said last time, but somewhere along the lines of this week, I seemed to forget that she is only 21... and that I'm 42. I kept pace with her, in what I thought was a pretty good clip, but I have to admit, Sunday I was close to death. Tired, hungover, and just plain burnt out from our visit. That's why I never posted any new entries over the weekend... because I had only enough brain cells functioning to get me through the basic tasks of the day... like waking up, sitting on the couch and operating the remote control.
So here we are, and it's Tuesday now. To believe or not to believe. I'll let you be the judge.
I took Marjorie to her day program. I'm feeling like today's situation was a result of two possibly different scenarios. The first one, being an "ironic" outcome. As I picked her up, I was gently pulled aside by one of the coordinators and "informed" that Marjorie was not smelling very pretty today. More than one of the volunteers had made comments to her in regards to the way she was smelling, and that she had most likely had an accident. This morning, I made sure to equip her for her day out. Mum is still quite conscious of the way she appears (most days), to other people, but I do admit that equipping her with incontinence products is quite difficult. So we left the house today, fresh as a daisy, and looking forward to her day program. That itself, had me on high alert. Marjorie NEVER looks forward to her day program. This is where the ironic part comes into play. Marjorie has hated this program for three, long years. Earlier on, when she had more mental capabilities, she made note of the program on her calendar, and as the day rolled around, she just refused to attend. Many times, I resorted to lying about our destination. Once we pulled into the parking lot, I'd have many different reactions, some angry, some sad, illness' would appear, arguing ensued and it was an all-around unpleasant experience. :Lately, however, she has been much less opposed to the day program, with less arguing, less resistance and actually saying that she has enjoyed her day when I pick her up. Ironic, isn't it, that I finally get her to this point, and she is now on the brink of being expelled due to her incontinence.
My second theory, is that I'm full of shit, or that she is. (not literally... don't think I'm making a funny on the whole incontinence issue). That she hasn't warmed up to the program at all, but rather she's found the ultimate out. Realized that there are rules and regulations in order for her to qualify for this......a large one being that the attendees must be fully capable of caring for themselves for that four hours, in terms of bathroom breaks. And that all this sudden "calmness" surrounding the day program is actually a big act, and Marjorie realizes that it's only a matter of time before they kick her out. Fill the depends, create a distinct smell of urine and/or feces, and you receive a "get out of jail free" card..... no questions asked.
This is a tough one, because if I try to bring up the fact that she may be having accidents, Marjorie denies there is any problem. Should I point out the fact that she now wears "protection", she insists that it is her time of the month and that all women HAVE to wear these feminine hygiene products. I guess it would be human nature to deny the fact that you have lost control of your bodily functions..... I know I probably would. If I don't try to talk to her, I risk her being let go from the program, which ultimately, has been Marjorie's goal all along. If I explain to her the reasons WHY she will be let go from the program, a small part of me believes that she will utilize this to her advantage, and ultimately will get what she has wanted all along... no never return to the program in the first place.
So there we have it, my quandary for the day. Now while most people would look at this and think that I am so far off base, that it has nothing to do with Marjorie being sneaky or conniving...that I'm crazy to think an 80 yr old woman with dementia could possibly engineer this whole scenario and that it's nothing more than her age, combined with her disease, and the HUGE fact that she is slowly losing control of her bodily functions.... I have to say I am leaning towards the engineering and execution of the perfect plan. Marjorie, I'm onto you, and honestly? Quite thoroughly impressed with this ingenious plan of yours. Cudos to you Mum.......
I am a believer.
:)
Friday, October 22, 2010
It's just stuff.....
What a beautiful fall day today. I am sitting in my dining room, typing this, and looking at the beautiful fall colors in my back yard. I would sit in my living room and type, but as it stands, the blinds on our living room picture window, are no longer in service. Now they've been out of service numerous times, but Gray has always been able to fix them, when the cord was pulled clean out of the mechanism. This time, I doubt it. Not only has the cord been pulled CLEAN out of the mechanism, but the cord has disappeared altogether. So that makes for a difficult fixing task.
When I inquired as to HOW this happened, and WHERE the cord might be, Marjorie immediately whispered that Meg had broken the blind and hidden the cord, with the hope that I would not find out.
Ahhhh. Meghan. That is my niece. She is visiting from Charlottetown, PEI, to spend time with her G'ma. Nice girl. Took the blame in stride. If we find the cord, the blind will be ONCE again, operational. Sad, cause it's such a beautiful view.
Marjorie is unloading the dishwasher. It makes her feel like she is helping. Small tasks. These are important for a person suffering from dementia. Make them feel like they are needed. It is probably one of the most important services that a caregiver can provide for the patient. Granted, I just watched my dinner plates get put in the pot cupboard, but that is easily rectified, now isn't it?
As my title states, it's just stuff. A very wise, very useful mantra that my sister taught me.
It can all be replaced, it can all be fixed. Or you can realize that you never actually needed the stuff in the first place.
Off to spend some more time with my niece. She is a whopping 21 yrs old and is a pilot, already. Flies planes. I find that highly impressive, considering what I was doing at that age. One person I feel that would have been so proud of her is my Dad (her G'pa). He loved to fly, and secretly, I think that he was the most proud of my brother... and the fact that he did become a pilot. I wish he had been alive to see this. But hopefully he's watching over her as she flies her plane, that apparently has a makeshift rudder formed from tinfoil, and a strut that has been duct-taped BACK onto the wing!!!! (the plane is old...circa 1968)... take note Dad.. :)
I hope you all have a fabulous weekend.
When I inquired as to HOW this happened, and WHERE the cord might be, Marjorie immediately whispered that Meg had broken the blind and hidden the cord, with the hope that I would not find out.
Ahhhh. Meghan. That is my niece. She is visiting from Charlottetown, PEI, to spend time with her G'ma. Nice girl. Took the blame in stride. If we find the cord, the blind will be ONCE again, operational. Sad, cause it's such a beautiful view.
Marjorie is unloading the dishwasher. It makes her feel like she is helping. Small tasks. These are important for a person suffering from dementia. Make them feel like they are needed. It is probably one of the most important services that a caregiver can provide for the patient. Granted, I just watched my dinner plates get put in the pot cupboard, but that is easily rectified, now isn't it?
As my title states, it's just stuff. A very wise, very useful mantra that my sister taught me.
It can all be replaced, it can all be fixed. Or you can realize that you never actually needed the stuff in the first place.
Off to spend some more time with my niece. She is a whopping 21 yrs old and is a pilot, already. Flies planes. I find that highly impressive, considering what I was doing at that age. One person I feel that would have been so proud of her is my Dad (her G'pa). He loved to fly, and secretly, I think that he was the most proud of my brother... and the fact that he did become a pilot. I wish he had been alive to see this. But hopefully he's watching over her as she flies her plane, that apparently has a makeshift rudder formed from tinfoil, and a strut that has been duct-taped BACK onto the wing!!!! (the plane is old...circa 1968)... take note Dad.. :)
I hope you all have a fabulous weekend.
Thursday, October 21, 2010
The Opposite of Everything
Hi Folks:
To write about this makes me a little sad, so I will do my best to spike it with some of my best humour. Warning though, please do not be offended or disgusted in any way by my weird, off-beat sense of humour. That's all it is, and most times, it's all I've got to keep sane.
Earlier, I wrote about the manicure. This is just one of the many examples of my "opposite of everything" hypothesis. First let me talk about Mum, and I mean MY MUM.... the woman who raised me, fed me, clothed me, took care of me, put up with me... all that stuff.
Marjorie was a wonderful Mum. She had her quirks, and she wasn't perfect, but nobody is. In terms of motherhood, Marjorie was pretty close. As the youngest of five children, I believe that I got the best of her. I also believe as the youngest I got the worst. This made for a good combination though, as I can honestly say that I had an awesome childhood. I hear stories from other people, horror stories, sad stories, mediocre stories making up their childhood as a decent, an "OK", or a terrible experience. I had a great experience, but I also had my sister too.
Marjorie was an unconventional mother, to say the least. My Brother and Sister and I often laugh and tell the stories about when we lived in NW ONT. Mum would turf us out the door to play outside. She always yelled after us "don't forget your orange hats! It's hunting season, and I don't want you to get shot!!!" We all laugh, each time we tell or hear that (true) story.
I didn't have many rules, hardly any responsibilities, which made for a very sweet life as a child and even sweeter as a teenager. I felt that I could talk to Mum about anything and everything. If I had an issue, I didn't tell my best friend, I told my Mum. She taught me that most friends (not all) come and go from our lives, but your family, your blood, they are with you always. I remember laughing with my Mum, alot. I remember crying on her shoulder, alot. I remember fighting with her, alot. I was a very spirited teenager, but she never gave up on me. We drifted apart for a couple of years at the end of my high school career, but once I moved away to University, I could not go a full day without talking to her on the phone. We talked about everything. She guided me through that first year, when I was so homesick that I almost quit school. I think that is what I miss most about my Mum. Our chats. The way we used to talk about anything and everything. She helped me, guided me, steered me through all the major events in my life. Break-ups, school, more break-ups, marriage, babies..... and then it ended. After my daughter was born, it all changed. If I look back, I know I saw the difference in her, the changes..... but I just didn't acknowledge them, I guess. That is the short version of my relationship with my Mum.
Now Marjorie? Well now.... Marjorie is a different story. I refer to her as Marjorie now, because the woman that I care for, she looks like my Mum. She sounds like my Mum. But that woman is NOT my Mum. Dementia is a very complex, very unforgiving disease. Mum spent her whole life caring for everyone. Her kids, her husband, her parents, stray friends that had bad home lives, stray animals that had no home, friends who had problems..... she took care of all. Now, it's the complete opposite. Marjorie does not want to care for anyone/anything. She just wants taken care of. And you know what? So she should be. I mean, if you look at it, she deserves it. Approximately 50 years of her life she spent catering to others.... so why shouldn't she be completely catered TO now? And that's why I'm here. Again, dementia is complex. But in caring for Marjorie, and also hearing other stories, I realize that in some way, when a person gets Alzheimer's, they become the complete polar opposite of the person they once were. A caring, nurturing, giving person turns into a selfish narcissist. An angry, volatile person turns into a quiet and calm person. A quiet and calm person turns into an angry and volatile person.... and so on... and so on. Mum was always pristeenly dressed and presentable. Her hair always done nicely, clothes always beautiful, clean, ready to take on whatever the day would throw her. Marjorie wouldn't shower ever again, if she wasn't forced. Nor would she change her undies, socks and/or clothes. Marjorie would just wear the same outfit over and over again, and fall into a deep pit of unhygienic filth, if she was not prompted, then forced to take a shower twice per week. Complete opposite of Mum. Now that Marjorie has discovered depends, she has figured out that she doesn't ALWAYS have to go to the bathroom, that she can just let go in her depends and be good for another hour or so, till I catch wind of her and take her into her bathroom and make her change. This would have horrified Mum, so I am very glad she is not here to see it.
Marjorie argues with everything, from what socks to wear, to what she wants to eat for lunch. Its a tough situation for me, and the family, but we play it out with humour as best as we can.
I guess the point of this long, drawn out entry is that what it's come down to is the opposite of everything. I have made this observation after three solid years of caring for Marjorie, and have adjusted my techniques of caring accordingly. I see it as a last attempt, on her behalf, to maintain control over what is happening to her. It mush be terrifying to be aware that you are losing your memory, your mind and there is nothing you can do about it. So exercising a little control by demanding the opposite of everything that is suggested to her makes sense to me, finally.
That being said, I haven't seen Mum in quite a while. Almost two weeks to be exact. We sat on the front porch with a glass of wine, and she turned to me and asked me when Dad died. I told her, and then we went on to discuss his illness, the bad winter and how she just knew he wasn't coming home with us. she knew he was going to die in that hospital bed. And then proceeded on saying that she knew she was being sentence to at LEAST another 2 months minimum of the hospital cafeteria food. Although she did enjoy the fries and gravy. :) We also briefly touched on her other children, I gave her an update. She asked me if they all knew about her condition, and that she was losing her mind, and I told her yes. And as quick as she came..... My Mum was gone again.
I miss her terribly. And Marjorie is very gracious and appreciative of the work I do for her, but she is also very callous in the respect that she comments on my weight and harps me everyday, to drop 20 lbs.
That concludes today's post. I may get on again after I see how the day goes. Meg, my neice is here staying and I am really enjoying her visit. We are taking Marjorie shopping this afternoon, so here's hoping she doesn't shop life anything (another trait that Mum never had, but Marjorie seems quite fond of!!!!!!
To write about this makes me a little sad, so I will do my best to spike it with some of my best humour. Warning though, please do not be offended or disgusted in any way by my weird, off-beat sense of humour. That's all it is, and most times, it's all I've got to keep sane.
Earlier, I wrote about the manicure. This is just one of the many examples of my "opposite of everything" hypothesis. First let me talk about Mum, and I mean MY MUM.... the woman who raised me, fed me, clothed me, took care of me, put up with me... all that stuff.
Marjorie was a wonderful Mum. She had her quirks, and she wasn't perfect, but nobody is. In terms of motherhood, Marjorie was pretty close. As the youngest of five children, I believe that I got the best of her. I also believe as the youngest I got the worst. This made for a good combination though, as I can honestly say that I had an awesome childhood. I hear stories from other people, horror stories, sad stories, mediocre stories making up their childhood as a decent, an "OK", or a terrible experience. I had a great experience, but I also had my sister too.
Marjorie was an unconventional mother, to say the least. My Brother and Sister and I often laugh and tell the stories about when we lived in NW ONT. Mum would turf us out the door to play outside. She always yelled after us "don't forget your orange hats! It's hunting season, and I don't want you to get shot!!!" We all laugh, each time we tell or hear that (true) story.
I didn't have many rules, hardly any responsibilities, which made for a very sweet life as a child and even sweeter as a teenager. I felt that I could talk to Mum about anything and everything. If I had an issue, I didn't tell my best friend, I told my Mum. She taught me that most friends (not all) come and go from our lives, but your family, your blood, they are with you always. I remember laughing with my Mum, alot. I remember crying on her shoulder, alot. I remember fighting with her, alot. I was a very spirited teenager, but she never gave up on me. We drifted apart for a couple of years at the end of my high school career, but once I moved away to University, I could not go a full day without talking to her on the phone. We talked about everything. She guided me through that first year, when I was so homesick that I almost quit school. I think that is what I miss most about my Mum. Our chats. The way we used to talk about anything and everything. She helped me, guided me, steered me through all the major events in my life. Break-ups, school, more break-ups, marriage, babies..... and then it ended. After my daughter was born, it all changed. If I look back, I know I saw the difference in her, the changes..... but I just didn't acknowledge them, I guess. That is the short version of my relationship with my Mum.
Now Marjorie? Well now.... Marjorie is a different story. I refer to her as Marjorie now, because the woman that I care for, she looks like my Mum. She sounds like my Mum. But that woman is NOT my Mum. Dementia is a very complex, very unforgiving disease. Mum spent her whole life caring for everyone. Her kids, her husband, her parents, stray friends that had bad home lives, stray animals that had no home, friends who had problems..... she took care of all. Now, it's the complete opposite. Marjorie does not want to care for anyone/anything. She just wants taken care of. And you know what? So she should be. I mean, if you look at it, she deserves it. Approximately 50 years of her life she spent catering to others.... so why shouldn't she be completely catered TO now? And that's why I'm here. Again, dementia is complex. But in caring for Marjorie, and also hearing other stories, I realize that in some way, when a person gets Alzheimer's, they become the complete polar opposite of the person they once were. A caring, nurturing, giving person turns into a selfish narcissist. An angry, volatile person turns into a quiet and calm person. A quiet and calm person turns into an angry and volatile person.... and so on... and so on. Mum was always pristeenly dressed and presentable. Her hair always done nicely, clothes always beautiful, clean, ready to take on whatever the day would throw her. Marjorie wouldn't shower ever again, if she wasn't forced. Nor would she change her undies, socks and/or clothes. Marjorie would just wear the same outfit over and over again, and fall into a deep pit of unhygienic filth, if she was not prompted, then forced to take a shower twice per week. Complete opposite of Mum. Now that Marjorie has discovered depends, she has figured out that she doesn't ALWAYS have to go to the bathroom, that she can just let go in her depends and be good for another hour or so, till I catch wind of her and take her into her bathroom and make her change. This would have horrified Mum, so I am very glad she is not here to see it.
Marjorie argues with everything, from what socks to wear, to what she wants to eat for lunch. Its a tough situation for me, and the family, but we play it out with humour as best as we can.
I guess the point of this long, drawn out entry is that what it's come down to is the opposite of everything. I have made this observation after three solid years of caring for Marjorie, and have adjusted my techniques of caring accordingly. I see it as a last attempt, on her behalf, to maintain control over what is happening to her. It mush be terrifying to be aware that you are losing your memory, your mind and there is nothing you can do about it. So exercising a little control by demanding the opposite of everything that is suggested to her makes sense to me, finally.
That being said, I haven't seen Mum in quite a while. Almost two weeks to be exact. We sat on the front porch with a glass of wine, and she turned to me and asked me when Dad died. I told her, and then we went on to discuss his illness, the bad winter and how she just knew he wasn't coming home with us. she knew he was going to die in that hospital bed. And then proceeded on saying that she knew she was being sentence to at LEAST another 2 months minimum of the hospital cafeteria food. Although she did enjoy the fries and gravy. :) We also briefly touched on her other children, I gave her an update. She asked me if they all knew about her condition, and that she was losing her mind, and I told her yes. And as quick as she came..... My Mum was gone again.
I miss her terribly. And Marjorie is very gracious and appreciative of the work I do for her, but she is also very callous in the respect that she comments on my weight and harps me everyday, to drop 20 lbs.
That concludes today's post. I may get on again after I see how the day goes. Meg, my neice is here staying and I am really enjoying her visit. We are taking Marjorie shopping this afternoon, so here's hoping she doesn't shop life anything (another trait that Mum never had, but Marjorie seems quite fond of!!!!!!
Tuesday, October 19, 2010
The Adult Day Program
Good morning Folks;
This morning, I dropped Marjorie at her day program. This is a service provided by the local community centre in your area, and funded by the Alzheimer's society. If you are not aware of this program, then you should be. Contact your case worker (Community Care Access Centre nearest you), to set up an appointment to discuss placing your loved one here, in the program once or twice per week.
This program is geared specifically towards dementia patients. They gather @9am, and the day revolves around tasks, topics, games, exercises (both mental and physical), all activities to keep our loved ones with AD active and involved for the 5.5 hours they attend. It is a marvelous program, receiving two thumbs up from me.
Now it's not always easy to get Marjorie to go there. Part of her dementia manifests itself as withdrawal from society, unknown places or people. She is finding it increasingly difficult to function in an unfamiliar place, as she feels unsafe. I can understand and respect this, and it was very rough, at first to take her and leave her there. I felt guilty. But once they allowed me to observe, and see that she was actually taking part and participating, I felt much better. The volunteers and the Women who run the program are absolutely amazing. It is 5.5 hours of complete and utter devotion to the people who attend. Marjorie thrives under these conditions. She loves to be doted on, and during the drive home, she is always in a chipper mood as she tells me she is never going back there!!! Apparently, all the people are really old!
No as well as being an important part of Marjorie's treatment, the day program provides me with a much needed "day off". Today I have four hours to myself, as the kids are at school, husband is working and it's just me and my lovely dog Ozzie. The house is quiet, and I am able to recharge and feel fresh and relaxed by the time I'm due to pick her up @2:30.
Once again, it is called the Adult Day Program and more information on this can be found through the Alzheimer's.ca website, or through your CCAC case worker.
I'm now off to enjoy my downtime.
This morning, I dropped Marjorie at her day program. This is a service provided by the local community centre in your area, and funded by the Alzheimer's society. If you are not aware of this program, then you should be. Contact your case worker (Community Care Access Centre nearest you), to set up an appointment to discuss placing your loved one here, in the program once or twice per week.
This program is geared specifically towards dementia patients. They gather @9am, and the day revolves around tasks, topics, games, exercises (both mental and physical), all activities to keep our loved ones with AD active and involved for the 5.5 hours they attend. It is a marvelous program, receiving two thumbs up from me.
Now it's not always easy to get Marjorie to go there. Part of her dementia manifests itself as withdrawal from society, unknown places or people. She is finding it increasingly difficult to function in an unfamiliar place, as she feels unsafe. I can understand and respect this, and it was very rough, at first to take her and leave her there. I felt guilty. But once they allowed me to observe, and see that she was actually taking part and participating, I felt much better. The volunteers and the Women who run the program are absolutely amazing. It is 5.5 hours of complete and utter devotion to the people who attend. Marjorie thrives under these conditions. She loves to be doted on, and during the drive home, she is always in a chipper mood as she tells me she is never going back there!!! Apparently, all the people are really old!
No as well as being an important part of Marjorie's treatment, the day program provides me with a much needed "day off". Today I have four hours to myself, as the kids are at school, husband is working and it's just me and my lovely dog Ozzie. The house is quiet, and I am able to recharge and feel fresh and relaxed by the time I'm due to pick her up @2:30.
Once again, it is called the Adult Day Program and more information on this can be found through the Alzheimer's.ca website, or through your CCAC case worker.
I'm now off to enjoy my downtime.
Monday, October 18, 2010
"WINNERS" (the chain store) provided years of free training for me.....
Who knew? I have spent many a lunch hour whipping through your store's racks, looking for that perfect blouse, pair of jeans, winter jacket, kids sizes etc. Now in my early 40``S, I can honestly say I`m a pro at it.... have it down to a science....
Get in, peruse at hyper speed, seeing everything, missing nothing. Sometimes I was known to get in and out in as little as 15 minutes, round store trip.
Well all that hard work and training has not gone by the wayside. Tonight, I pulled (what I now affectionately call) my ``winner`s rounds``. Yup....you are dying to know what I mean by that phrase ``winner`s rounds``...I know you are.
In a nutshell, I head into Marjorie`s closet. Its a large closet, housing a decent amount of clothing for a 79 yr old woman with dementia. There is no law stating that just because you are losing you mind, you must also lose your fashion sense. Back to the closet... I peruse, through all the pants, the sweaters, the blouses aaaand BINGO! There it is, a pair of panties with a depends still stuck to them. Hidden under a cami and a pyjama shirt. I throw it to the floor and continue..... OOH... here we go, we have the purse. (OK, the purse is just an entire blog entry of it`s own... coming soon). And finally, multiple pairs of my husbands underpants, all neatly hung over the hanger, but in a bunch, and camouflaged by a yoga jacket. Marjorie hides his undies all the time. She thinks they are Dad`s, and you cannot tell her otherwise.
So tonight`s ``Winner`s rounds`` paid of in spades. My husband knows I am writing about this in my blog tonight. Secretly, I think he`s now thankful for all those trips I made to Winners. Now that he has a full drawer of undies. :)
Get in, peruse at hyper speed, seeing everything, missing nothing. Sometimes I was known to get in and out in as little as 15 minutes, round store trip.
Well all that hard work and training has not gone by the wayside. Tonight, I pulled (what I now affectionately call) my ``winner`s rounds``. Yup....you are dying to know what I mean by that phrase ``winner`s rounds``...I know you are.
In a nutshell, I head into Marjorie`s closet. Its a large closet, housing a decent amount of clothing for a 79 yr old woman with dementia. There is no law stating that just because you are losing you mind, you must also lose your fashion sense. Back to the closet... I peruse, through all the pants, the sweaters, the blouses aaaand BINGO! There it is, a pair of panties with a depends still stuck to them. Hidden under a cami and a pyjama shirt. I throw it to the floor and continue..... OOH... here we go, we have the purse. (OK, the purse is just an entire blog entry of it`s own... coming soon). And finally, multiple pairs of my husbands underpants, all neatly hung over the hanger, but in a bunch, and camouflaged by a yoga jacket. Marjorie hides his undies all the time. She thinks they are Dad`s, and you cannot tell her otherwise.
So tonight`s ``Winner`s rounds`` paid of in spades. My husband knows I am writing about this in my blog tonight. Secretly, I think he`s now thankful for all those trips I made to Winners. Now that he has a full drawer of undies. :)
Timeouts.
I'm taking one.... right now.
I have placed a pile of clean laundry beside Marjorie, put Dancing with the stars on the telly, and I'm taking a time out.
As I told you in my last post, sleep is not something I have had alot of over the last day or two. I haven't actually showered in almost three days. My fault, as we are just coming off a weekend, and my husband could've easily have watched over stuff while I did, but I didn't. I'm cranky, pretty sure I smell funky, and my patience is at zero.
Pushing me over the edge right now is the constant repetition. Marjorie just had a pedi/mani. Nails are beautiful, toenails and feet are lovely. I have this amazing woman that actually comes to the house and does it.
Well, the polish isn't the right color. She's now asked me at LEAST 20 times who did her nails, and why did they use such a vile color on her. (that vile color being the one SHE insisted on). Finally, I agree with her. "Yes Mum, that color is terrible, you are right". I thought by agreeing with her, she would stop the festering. Instead, I made it worse. Sometimes I just never learn. $25 manicure, and I just removed all the nail polish completely, leaving her with naked, natural nails. Marjorie was quiet for a moment and says...."Why did you take off my nail polish? It was so pretty and I like having my nails painted!!! Will you paint my nails this pretty color?"
This is a part of dementia. The part where the person who is suffering from it, feels the need to project their disease onto you in such a fashion that is causes temporary craziness (or permanent craziness, as in my case). Sometimes little situations like this one, push me to the edge. I (honestly) feel sometimes that she is doing this on purpose. I know that its the dementia, I KNOW this, but it would be freaking impossible (humanely) not to think that this woman harped me for 25 minutes, begging me to remove the nail polish, only to turn around and ask for it back once I finally removed it. I tell myself its the disease.... I do. I must tell myself that 100 times per day, but geeeeeeeesh. It makes me wonder sometimes.
Instead of letting my head explode, I choose to take a step back. A "timeout", so to speak. But it's difficult, because I have a huge pot of turkey soup simmering on the stove and god KNOWS what sort of mischief she'd get into if I actually went upstairs. So here I am, retreating into my blog for a much needed "time-out".
In the background, as I type, I am aware of the constant question being fired at me. "what IS IT you do on that little box. Is it a TV.....can I see....
time outs. ya.... necessity.
I have placed a pile of clean laundry beside Marjorie, put Dancing with the stars on the telly, and I'm taking a time out.
As I told you in my last post, sleep is not something I have had alot of over the last day or two. I haven't actually showered in almost three days. My fault, as we are just coming off a weekend, and my husband could've easily have watched over stuff while I did, but I didn't. I'm cranky, pretty sure I smell funky, and my patience is at zero.
Pushing me over the edge right now is the constant repetition. Marjorie just had a pedi/mani. Nails are beautiful, toenails and feet are lovely. I have this amazing woman that actually comes to the house and does it.
Well, the polish isn't the right color. She's now asked me at LEAST 20 times who did her nails, and why did they use such a vile color on her. (that vile color being the one SHE insisted on). Finally, I agree with her. "Yes Mum, that color is terrible, you are right". I thought by agreeing with her, she would stop the festering. Instead, I made it worse. Sometimes I just never learn. $25 manicure, and I just removed all the nail polish completely, leaving her with naked, natural nails. Marjorie was quiet for a moment and says...."Why did you take off my nail polish? It was so pretty and I like having my nails painted!!! Will you paint my nails this pretty color?"
This is a part of dementia. The part where the person who is suffering from it, feels the need to project their disease onto you in such a fashion that is causes temporary craziness (or permanent craziness, as in my case). Sometimes little situations like this one, push me to the edge. I (honestly) feel sometimes that she is doing this on purpose. I know that its the dementia, I KNOW this, but it would be freaking impossible (humanely) not to think that this woman harped me for 25 minutes, begging me to remove the nail polish, only to turn around and ask for it back once I finally removed it. I tell myself its the disease.... I do. I must tell myself that 100 times per day, but geeeeeeeesh. It makes me wonder sometimes.
Instead of letting my head explode, I choose to take a step back. A "timeout", so to speak. But it's difficult, because I have a huge pot of turkey soup simmering on the stove and god KNOWS what sort of mischief she'd get into if I actually went upstairs. So here I am, retreating into my blog for a much needed "time-out".
In the background, as I type, I am aware of the constant question being fired at me. "what IS IT you do on that little box. Is it a TV.....can I see....
time outs. ya.... necessity.
The Show Must Go On
Hello folks:
Last nite I wrote about sundowning and it's effects. This morning, I am a ragged, jumpy and cranky specimen. Not an optimal state for a caregiver to provide her best to the patient, but a state that I'm sure almost every caregiver finds him/herself in more often than not. It started with the sundowning and progressed into what was a very restless, very confused evening. Marjorie would not settle down, not for anything. We started the bedtime routine around 9pm. This followed a nice dinner, and some television watching. A hot cup of tea and a cookie. These are all comfort tools that I like to use to "wind the day down". Marjorie kept asking for wine, kept wanting to get up and get her own wine, relentlessly, until I gave in and poured her a "nightcap". I really thought that was going to do it. "Nightcap" was something that Mum and Dad had frequently in their day, leading to bed. I thought it would trigger a response for the bedtime ritual, and it did help for a short time, but was definitely not the answer I was looking for.
By 10 pm, I had her cozied into her favourite flannel pj's, bed warmer on, Dancing with the stars on her telly, and she was as snug as a bug in a rug. I kissed her goodnight, told her I loved her and I shut her door. After setting the alarm, I turned around to find her standing behind me and asking me what we were having for dinner. And it started AAALLL over again. Back to her bed, this time with a small snack that she quickly packed away and it seemed to satisfy her. Once again, I kissed her goodnight, tucked her in and left her for the what I thought was the entire evening. Not so.
Fast forward to 3 am. I finally broke down, as her main focus seemed to be dinner. Marjorie was adamant that she was out and missed our dinner earlier. She was "somewhere else" and could not stand her tummy growling anymore. She needed to eat dinner. I made soup and a sandwich. She ate all her soup, half her sandwich and a full glass of milk. (although she made it perfectly clear that she would have preferred wine). Once again, we performed the bedtime ritual. Teeth brushed, personal hygiene and bathroom visit, kiss, tuck in and the I love yous...... by this time, it's 4am. And guess what? She finally went to sleep.
I crawled upstairs, lay down, closed my eyes and exactly 45 minutes later, my alarm went off and I was out of bed and downstairs making my hubby's lunch, and coffee. I'll admit, I was not the chirpiest wifey this morning, but that's one of my greatest challenges.... I'm not just caring for Mum... but also two other kids, three if you include my husband.. As cheerfully as I could muster.... I sent the hubby off to work and set off to get my son out of bed. He is the next to get going and out of the house. Thank GAWD Marjorie will be tired and sleeping through this part of the morning routine. Thank GAWD.
We are now roughly @ 7am. Graham is still not dressed, still hasn't gotten his school supplies packed... well he hasnt' even managed to brush his teeth or hair. That chirpiness I was referring to earlier? Ya.... it's gone now.
With the help of my daughter (who is up by now, with all the noise) we manage to get Graham off to the bus. Now I turn to Emma's needs. Breakfast, lunch, signing agenda, notes, tests etc. This has brought us to 8:30. I look at the clock and I think "oh, I may have an hour or two to catch some Zzz, after Emma leaves. Marjorie won't POSSIBLY be up till 10 or so this morning, after that terrible nite. WRONG!!!!!
As I hustle Emma out the door, drive her to school, return home to what I think is going to be an hour of "me time", I am greeted by Marjorie. She's hungry. She didn't have any dinner last nite and she is ravenous.
Today is going to be a long day. But as they say, the show must go on.
:)
Last nite I wrote about sundowning and it's effects. This morning, I am a ragged, jumpy and cranky specimen. Not an optimal state for a caregiver to provide her best to the patient, but a state that I'm sure almost every caregiver finds him/herself in more often than not. It started with the sundowning and progressed into what was a very restless, very confused evening. Marjorie would not settle down, not for anything. We started the bedtime routine around 9pm. This followed a nice dinner, and some television watching. A hot cup of tea and a cookie. These are all comfort tools that I like to use to "wind the day down". Marjorie kept asking for wine, kept wanting to get up and get her own wine, relentlessly, until I gave in and poured her a "nightcap". I really thought that was going to do it. "Nightcap" was something that Mum and Dad had frequently in their day, leading to bed. I thought it would trigger a response for the bedtime ritual, and it did help for a short time, but was definitely not the answer I was looking for.
By 10 pm, I had her cozied into her favourite flannel pj's, bed warmer on, Dancing with the stars on her telly, and she was as snug as a bug in a rug. I kissed her goodnight, told her I loved her and I shut her door. After setting the alarm, I turned around to find her standing behind me and asking me what we were having for dinner. And it started AAALLL over again. Back to her bed, this time with a small snack that she quickly packed away and it seemed to satisfy her. Once again, I kissed her goodnight, tucked her in and left her for the what I thought was the entire evening. Not so.
Fast forward to 3 am. I finally broke down, as her main focus seemed to be dinner. Marjorie was adamant that she was out and missed our dinner earlier. She was "somewhere else" and could not stand her tummy growling anymore. She needed to eat dinner. I made soup and a sandwich. She ate all her soup, half her sandwich and a full glass of milk. (although she made it perfectly clear that she would have preferred wine). Once again, we performed the bedtime ritual. Teeth brushed, personal hygiene and bathroom visit, kiss, tuck in and the I love yous...... by this time, it's 4am. And guess what? She finally went to sleep.
I crawled upstairs, lay down, closed my eyes and exactly 45 minutes later, my alarm went off and I was out of bed and downstairs making my hubby's lunch, and coffee. I'll admit, I was not the chirpiest wifey this morning, but that's one of my greatest challenges.... I'm not just caring for Mum... but also two other kids, three if you include my husband.. As cheerfully as I could muster.... I sent the hubby off to work and set off to get my son out of bed. He is the next to get going and out of the house. Thank GAWD Marjorie will be tired and sleeping through this part of the morning routine. Thank GAWD.
We are now roughly @ 7am. Graham is still not dressed, still hasn't gotten his school supplies packed... well he hasnt' even managed to brush his teeth or hair. That chirpiness I was referring to earlier? Ya.... it's gone now.
With the help of my daughter (who is up by now, with all the noise) we manage to get Graham off to the bus. Now I turn to Emma's needs. Breakfast, lunch, signing agenda, notes, tests etc. This has brought us to 8:30. I look at the clock and I think "oh, I may have an hour or two to catch some Zzz, after Emma leaves. Marjorie won't POSSIBLY be up till 10 or so this morning, after that terrible nite. WRONG!!!!!
As I hustle Emma out the door, drive her to school, return home to what I think is going to be an hour of "me time", I am greeted by Marjorie. She's hungry. She didn't have any dinner last nite and she is ravenous.
Today is going to be a long day. But as they say, the show must go on.
:)
Sunday, October 17, 2010
Smooth Jazz and wine.....
Round and around and around it goes....where it'll stop, nobody knows.
The sundowning is a killer for me. What, you may ask, is "sundowing?" Please read the following definition, courtesy of Wikipeidia:.
In medicine, sundowning, also known as sundown syndrome, is a syndrome involving the occurrence or increase of one or more abnormal behaviors in a circadian rhythm.[1] Sundowning typically occurs during the late afternoon, evening, and night, hence the name. It occurs in persons with certain forms of dementia and psychosis, such as seen in Alzheimer's disease. Although not widely surveyed, sundowning is estimated to occur in 45% of persons diagnosed with Alzheimer's disease.[2] A person who is sundowning may exhibit mood swings, become abnormally demanding, suspicious, upset or disoriented, and see or hear things that are not there in the late afternoon and evening. After wandering, sundowning is the second most common type of disruptive behavior in institutionalized persons with dementia.[3] Sundowning often co-occurs with wandering, and the combination of these two syndromes is an important contributing factor to an emergency situation: elopement at night. The cause of sundowning is unknown, but may be related to disturbed circadian rhythm[1] Contributing factors may include medications that can cause agitation or confusion,[4] and sleep disorders.
It all seems simple and clinical when described in the paragraph above, but if you witness it, live it, deal with it on a daily basis, you begin to realize that those horrible nursing homes just may be onto something.
Sundowning is the only thing, so far, that has me agreeing with the mass sedation of dementia patients that I am convinced, goes on in long term care institutions. When I toured them, (and I toured a lot of them) the one thing that struck me was the state of most of the patients in the Alzheimer's ward. They all seemed to be highly sedated and sleepy. Some residents were slumped over, strapped into chairs. Other's were just asleep in their rooms or in front of the television in the common room. This played a large role in my decision to care for Marjorie at home. I didn't want her drugged and left to live her life out in a semi-conscious state, in a strange place. Locked in and sedated. That's what I called it.
Tonight was a one of many, but one of the more "intense" periods of sundowning. It's like Marjorie cannot manage the change from day to nite. She might experience the same in the morning, but she's sleeping through the change from nite to day, so it doesn't affect her. Like clockwork, close to 4pm, she begins to become restless. She is not longer happy to sit with a cup of tea, a cookie, watching her favourite show or folding laundry. Suddenly, she needs to be roaming, on the move and touching almost everything in her path. Questioning every little specimen she comes across. Car keys, chapstiks, blackberry's, anything that she can lay her hands on. Blinds must be drawn, lights turned on, lights turned off, blinds pulled up again. She circles the living room, kitchen, and dining room, without fail, for up to two hours.
I find that music helps. Music and a big glass of wine. (ok, it's not real wine, but Mum loves to drink her wine, so we've switched it off for non-alcoholic). But as her dementia progress', these great savers are proving less effective. I can remember a few yrs ago, some smooth jazz, a glass of wine, and a small task like peeling potatoes, or making a salad would settle her into a happy, adjusted mood. I was adamant that I didn't need to place Mum on any sedatives. That I could manage the agitation with environmental adjustments. It used to be like that. But now, I realize that maybe the nursing homes may actually know what they are doing.
.25 mg of respirodone is now what Marjorie takes, twice daily. But even that doesn't seem to be calming this latest surge of sundowning. I am attributing it to the change of seasons (fall-winter) combined with the change from day to nite. I think it's just too much for her to absorb in such a short period.
Ok. Ok. Ok. I have just re-read this entry, and yes, it's dry. Dry and boring. But I may have lost you on the description, but I hope that I left you with some wisdom, or insight or something new for you to try in your situation, whatever that may be. Smooth Jazz and some wine. Sometimes that can't even cure it all. Maybe I owe those nursing homes an apology for all those terrible things I spouted about them. :)
The sundowning is a killer for me. What, you may ask, is "sundowing?" Please read the following definition, courtesy of Wikipeidia:.
In medicine, sundowning, also known as sundown syndrome, is a syndrome involving the occurrence or increase of one or more abnormal behaviors in a circadian rhythm.[1] Sundowning typically occurs during the late afternoon, evening, and night, hence the name. It occurs in persons with certain forms of dementia and psychosis, such as seen in Alzheimer's disease. Although not widely surveyed, sundowning is estimated to occur in 45% of persons diagnosed with Alzheimer's disease.[2] A person who is sundowning may exhibit mood swings, become abnormally demanding, suspicious, upset or disoriented, and see or hear things that are not there in the late afternoon and evening. After wandering, sundowning is the second most common type of disruptive behavior in institutionalized persons with dementia.[3] Sundowning often co-occurs with wandering, and the combination of these two syndromes is an important contributing factor to an emergency situation: elopement at night. The cause of sundowning is unknown, but may be related to disturbed circadian rhythm[1] Contributing factors may include medications that can cause agitation or confusion,[4] and sleep disorders.
It all seems simple and clinical when described in the paragraph above, but if you witness it, live it, deal with it on a daily basis, you begin to realize that those horrible nursing homes just may be onto something.
Sundowning is the only thing, so far, that has me agreeing with the mass sedation of dementia patients that I am convinced, goes on in long term care institutions. When I toured them, (and I toured a lot of them) the one thing that struck me was the state of most of the patients in the Alzheimer's ward. They all seemed to be highly sedated and sleepy. Some residents were slumped over, strapped into chairs. Other's were just asleep in their rooms or in front of the television in the common room. This played a large role in my decision to care for Marjorie at home. I didn't want her drugged and left to live her life out in a semi-conscious state, in a strange place. Locked in and sedated. That's what I called it.
Tonight was a one of many, but one of the more "intense" periods of sundowning. It's like Marjorie cannot manage the change from day to nite. She might experience the same in the morning, but she's sleeping through the change from nite to day, so it doesn't affect her. Like clockwork, close to 4pm, she begins to become restless. She is not longer happy to sit with a cup of tea, a cookie, watching her favourite show or folding laundry. Suddenly, she needs to be roaming, on the move and touching almost everything in her path. Questioning every little specimen she comes across. Car keys, chapstiks, blackberry's, anything that she can lay her hands on. Blinds must be drawn, lights turned on, lights turned off, blinds pulled up again. She circles the living room, kitchen, and dining room, without fail, for up to two hours.
I find that music helps. Music and a big glass of wine. (ok, it's not real wine, but Mum loves to drink her wine, so we've switched it off for non-alcoholic). But as her dementia progress', these great savers are proving less effective. I can remember a few yrs ago, some smooth jazz, a glass of wine, and a small task like peeling potatoes, or making a salad would settle her into a happy, adjusted mood. I was adamant that I didn't need to place Mum on any sedatives. That I could manage the agitation with environmental adjustments. It used to be like that. But now, I realize that maybe the nursing homes may actually know what they are doing.
.25 mg of respirodone is now what Marjorie takes, twice daily. But even that doesn't seem to be calming this latest surge of sundowning. I am attributing it to the change of seasons (fall-winter) combined with the change from day to nite. I think it's just too much for her to absorb in such a short period.
Ok. Ok. Ok. I have just re-read this entry, and yes, it's dry. Dry and boring. But I may have lost you on the description, but I hope that I left you with some wisdom, or insight or something new for you to try in your situation, whatever that may be. Smooth Jazz and some wine. Sometimes that can't even cure it all. Maybe I owe those nursing homes an apology for all those terrible things I spouted about them. :)
Friday, October 15, 2010
Something wicked this way comes.......
Good Morning:
Today, I would like to rant. Rant about the system. The health care system, the services they have in place for the elderly, especially those with dementia. These are best-described as a huge oxymoron. Like "jumbo-shrimp"
Yesterday I was visited by a social worker that covers my Mum's home care case. The reason for her visit was to discuss the latest changes in "long-term care" She informed me that with the changes, that the waiting time for Mum to get INTO a long term care facility had drastically changed. Prior to these changes, Mum was going to have to wait up to 5 years for a bed in a long-term care facility. This suited our situation, because I do not believe that Mum belongs in one of these facilities....at least not yet. We were quite happy to have her on the "back burner" of the waiting list, with a sort of "wait and see" attitude as to whether or not the day would come that I would feel the need to place her in one.
This is no longer the case. I was explained to yesterday, that with these changes, Mum is now eligible for a room almost any day now. Meaning that we could receive a call any day and she would be offered a room.
I took a few minutes to digest this information, and then asked the question: "what if we are not ready to place her in a long-term care facility?"...... and the reply was not what I wanted to hear. Should we be offered a bed, and refused it, our file would be closed for a minimum period of three months, and then re-opened only to have her placed farther back on the waiting list. In a nutshell, we would be penalized for trying to maintain Mum's care at on our own, in a home setting.
I am no where near ready to place my Mum in a home. I don't think she needs nor deserves to be shipped off to an institution. I also believe that there are many others out there that desperately need a bed in one of these facilities. I say this because my own father died waiting for a bed. He was on the emergency crucial list, and he still didn't get a bed in time. Mum is happy, healthy and comfy here at home with us. She displays little to no aggression/anger (yet), so I feel that I can still manage her care for quite some time.
What pissed me off about yesterday's meeting, is that I felt there were holding a gun to my head to make a decision. Either put her away, or remove her from the waiting list, hence removing any chances of her getting into a home should we need that facility. At the best of times, I do not like being "Bullied into decisions".... so yesterday, when I removed her from the waiting list, and ultimately any immediate chances of her getting a placement, I felt cheated, angry and cornered.
Also, you would think that when someone, such as me, removes her elderly mother from the waiting list, and ultimately from the long-term care system, that they would offer additional support in the home, where the care is taking place. By doing this, I just removed a small percentage of the burden of elder-care in the system... right? So you would assume they would offer a small amount of help to compensate. Not the case. Not the case at all.
So here's to all my kindred caregivers, most of you whom are spouses and not children. I feel for you.
option 1: turf your loved one into a home. Option 2: remove from the list and hang in limbo wondering if you'll ever have the opportunity to place them in long-term care, once the need really arises.
I'm sure there is more to it than what I included in my little rant, but that is how I am feeling today.
Mum has had a tough day today. Her agitation is at an all time high, and she is just circling the kitchen/family room touching and re-arranging things all over the place. So that ends today's boring and negative entry.
Enjoy your weekend all.
:)
Today, I would like to rant. Rant about the system. The health care system, the services they have in place for the elderly, especially those with dementia. These are best-described as a huge oxymoron. Like "jumbo-shrimp"
Yesterday I was visited by a social worker that covers my Mum's home care case. The reason for her visit was to discuss the latest changes in "long-term care" She informed me that with the changes, that the waiting time for Mum to get INTO a long term care facility had drastically changed. Prior to these changes, Mum was going to have to wait up to 5 years for a bed in a long-term care facility. This suited our situation, because I do not believe that Mum belongs in one of these facilities....at least not yet. We were quite happy to have her on the "back burner" of the waiting list, with a sort of "wait and see" attitude as to whether or not the day would come that I would feel the need to place her in one.
This is no longer the case. I was explained to yesterday, that with these changes, Mum is now eligible for a room almost any day now. Meaning that we could receive a call any day and she would be offered a room.
I took a few minutes to digest this information, and then asked the question: "what if we are not ready to place her in a long-term care facility?"...... and the reply was not what I wanted to hear. Should we be offered a bed, and refused it, our file would be closed for a minimum period of three months, and then re-opened only to have her placed farther back on the waiting list. In a nutshell, we would be penalized for trying to maintain Mum's care at on our own, in a home setting.
I am no where near ready to place my Mum in a home. I don't think she needs nor deserves to be shipped off to an institution. I also believe that there are many others out there that desperately need a bed in one of these facilities. I say this because my own father died waiting for a bed. He was on the emergency crucial list, and he still didn't get a bed in time. Mum is happy, healthy and comfy here at home with us. She displays little to no aggression/anger (yet), so I feel that I can still manage her care for quite some time.
What pissed me off about yesterday's meeting, is that I felt there were holding a gun to my head to make a decision. Either put her away, or remove her from the waiting list, hence removing any chances of her getting into a home should we need that facility. At the best of times, I do not like being "Bullied into decisions".... so yesterday, when I removed her from the waiting list, and ultimately any immediate chances of her getting a placement, I felt cheated, angry and cornered.
Also, you would think that when someone, such as me, removes her elderly mother from the waiting list, and ultimately from the long-term care system, that they would offer additional support in the home, where the care is taking place. By doing this, I just removed a small percentage of the burden of elder-care in the system... right? So you would assume they would offer a small amount of help to compensate. Not the case. Not the case at all.
So here's to all my kindred caregivers, most of you whom are spouses and not children. I feel for you.
option 1: turf your loved one into a home. Option 2: remove from the list and hang in limbo wondering if you'll ever have the opportunity to place them in long-term care, once the need really arises.
I'm sure there is more to it than what I included in my little rant, but that is how I am feeling today.
Mum has had a tough day today. Her agitation is at an all time high, and she is just circling the kitchen/family room touching and re-arranging things all over the place. So that ends today's boring and negative entry.
Enjoy your weekend all.
:)
Thursday, October 14, 2010
The Notebook vs Away From Her
Good Morning Folks!
OK, day #2 of my blog. I'm actually proud of myself for returning. After all, this is not the first blog I've started over the years. Maybe this one will stick.
Now for the explanation of my title. I admit to reading the book AND seeing the movie "The Notebook". However, that being said, I saw that movie prior to AD bombing my family. I found it funny, gripping, silly at times, and ultimately may have shed a tear at the end. Not an easy feat for me, as anyone that knows me well will testify to the fact that I am NOT a cryer.... not for anything. Flash forward to After Alzheimer's entered my life, and the only good thing I can muster up about that story, is the fact that they succeeded in showing us a picture of the heroine's life before Alzheimer's, perhaps being the only good thing about the movie. I guess my point in this blog is about knowing my mother. She wasn't always the person that she is today. Marjorie had lead quite a life, and I think that it deserves some mention here, before I start telling you about the present day. Let's learn a little more about my Mother.
Marjorie was born on April 21, 1931 in Glasgow, Scotland. Her parents were David and Peggy (Margaret) Gamble and Marjorie was the 10th of a total of 12 children. Yes, they were good catholics. Peggy spent a better part of her life pregnant. Shortly after Marjorie's birth, she was handed over to be adopted by Helen and Anthony of Renfrew, Scotland. Helen was Peggy's younger sister, and was unable to have children of her own. Being the time it was, and the fact that Peggy had hoards of kids, she kindly and selflessly gave one to her little sister. So legally adopted (or as legal as it gets in the 30's.... Mum's name on her birth certificate remained that of her birth parents.), she was raised by Anthony and Helen (affectionately know to all as "Tony and Ellen")
I think Marjorie had a good life growing up as an only child. Ellen spoiled her, as did Tony, both grateful for their blessing, I guess. Mum visited often with her siblings (or cousins, as she knew them), and she grew up loved, clothed, safe and secure, despite the food rations, bomb shelters and other horrific things they endured as a family during the war. Marjorie never speaks much of that, just a story here and there of how they lost their home, and had to run to shelters a few times when the bombs fell. I'm not sure what age Mum found out she was adopted, but I do know that she never, EVER told me until this last few years. Only my sister and my Father knew. It was a deep, dark family secret that she never wanted anyone to know.
Marjorie was a spirited child, well liked, polite and very adventurous. This sat well with Tony, who loved to take her fishing and hiking, but not so well with Helen, who adored her and loved to dress her little girl and do her hair in ringlets. As Marjorie grew older, their relationship deteriorated. Ellen was frequently ill and hospitalized for her Asthma, which also added to the distance between them. Looking back and listening to the stories, my sister and I are convinced that our Grandma (Ellen) suffered from some severe depression or other mental illness. It's sad to think that there was nothing available yet to help her.
Marjorie met Patrick (my Dad) at a fairly young age. He was attending the University of Glasgow, for medicine and Marjorie, by this time had been discovered by a photographer and was beginning a modelling career in London. They had a whirlwind romance, during which time Patrick spent alot of time away with the navy, but finally, he came home from North Korea and married Marjorie on December 17, 1950.
And there began a lifetime of travelling, parties, children, adventures and many more things that I couldn't begin to fit into one blog entry. But I will certainly try to tell you alot of them.
I think one flash-back per blog entry is sufficient. I don't want to lose you in the story, but rather keep your interest. Which is why I titled this the way I did. Both movies succeed in giving a good background of the person with AD, which I think is very important. As the primary care-giver to an AD patient, it is very easy to lose sight of the person you love and want to take care of, because that is not who you end up caring for. AD robs them of their personality, their quirks and traits that made them unique as a human being, along with so many other things. I try desperately to remember Marjorie from when she was actually Marjorie. She was a fantastic Mum (a little unconventional at times) but fantastic. I would bet my last dollar that she would sit down and laugh with me, if I were to tell her some of the things she does now. But I can't. And that is why between the two movies, "Away from her" is hands down, without a doubt the winner in portraying a true picture or experience of what Alzheimer's is like.
OK, day #2 of my blog. I'm actually proud of myself for returning. After all, this is not the first blog I've started over the years. Maybe this one will stick.
Now for the explanation of my title. I admit to reading the book AND seeing the movie "The Notebook". However, that being said, I saw that movie prior to AD bombing my family. I found it funny, gripping, silly at times, and ultimately may have shed a tear at the end. Not an easy feat for me, as anyone that knows me well will testify to the fact that I am NOT a cryer.... not for anything. Flash forward to After Alzheimer's entered my life, and the only good thing I can muster up about that story, is the fact that they succeeded in showing us a picture of the heroine's life before Alzheimer's, perhaps being the only good thing about the movie. I guess my point in this blog is about knowing my mother. She wasn't always the person that she is today. Marjorie had lead quite a life, and I think that it deserves some mention here, before I start telling you about the present day. Let's learn a little more about my Mother.
Marjorie was born on April 21, 1931 in Glasgow, Scotland. Her parents were David and Peggy (Margaret) Gamble and Marjorie was the 10th of a total of 12 children. Yes, they were good catholics. Peggy spent a better part of her life pregnant. Shortly after Marjorie's birth, she was handed over to be adopted by Helen and Anthony of Renfrew, Scotland. Helen was Peggy's younger sister, and was unable to have children of her own. Being the time it was, and the fact that Peggy had hoards of kids, she kindly and selflessly gave one to her little sister. So legally adopted (or as legal as it gets in the 30's.... Mum's name on her birth certificate remained that of her birth parents.), she was raised by Anthony and Helen (affectionately know to all as "Tony and Ellen")
I think Marjorie had a good life growing up as an only child. Ellen spoiled her, as did Tony, both grateful for their blessing, I guess. Mum visited often with her siblings (or cousins, as she knew them), and she grew up loved, clothed, safe and secure, despite the food rations, bomb shelters and other horrific things they endured as a family during the war. Marjorie never speaks much of that, just a story here and there of how they lost their home, and had to run to shelters a few times when the bombs fell. I'm not sure what age Mum found out she was adopted, but I do know that she never, EVER told me until this last few years. Only my sister and my Father knew. It was a deep, dark family secret that she never wanted anyone to know.
Marjorie was a spirited child, well liked, polite and very adventurous. This sat well with Tony, who loved to take her fishing and hiking, but not so well with Helen, who adored her and loved to dress her little girl and do her hair in ringlets. As Marjorie grew older, their relationship deteriorated. Ellen was frequently ill and hospitalized for her Asthma, which also added to the distance between them. Looking back and listening to the stories, my sister and I are convinced that our Grandma (Ellen) suffered from some severe depression or other mental illness. It's sad to think that there was nothing available yet to help her.
Marjorie met Patrick (my Dad) at a fairly young age. He was attending the University of Glasgow, for medicine and Marjorie, by this time had been discovered by a photographer and was beginning a modelling career in London. They had a whirlwind romance, during which time Patrick spent alot of time away with the navy, but finally, he came home from North Korea and married Marjorie on December 17, 1950.
And there began a lifetime of travelling, parties, children, adventures and many more things that I couldn't begin to fit into one blog entry. But I will certainly try to tell you alot of them.
I think one flash-back per blog entry is sufficient. I don't want to lose you in the story, but rather keep your interest. Which is why I titled this the way I did. Both movies succeed in giving a good background of the person with AD, which I think is very important. As the primary care-giver to an AD patient, it is very easy to lose sight of the person you love and want to take care of, because that is not who you end up caring for. AD robs them of their personality, their quirks and traits that made them unique as a human being, along with so many other things. I try desperately to remember Marjorie from when she was actually Marjorie. She was a fantastic Mum (a little unconventional at times) but fantastic. I would bet my last dollar that she would sit down and laugh with me, if I were to tell her some of the things she does now. But I can't. And that is why between the two movies, "Away from her" is hands down, without a doubt the winner in portraying a true picture or experience of what Alzheimer's is like.
Wednesday, October 13, 2010
Lets Get Started....
Good Morning Folks:
Today is the day that I start to really focus on blogging my experience (s) with Alzheimer's Disease.
I am three years into the journey of caring for my elderly mother, diagnosed with AD in Sept 2007. First I must say a special thanks to RIM, and my most fabulous blackberry, because I have managed to document many, if not all of my experiences on my blackberry, which never leaves my side. I will now do my best to transpose those moments, and more, here onto my blog.
If you are looking at this blog for a sad, sentimental, empathetic, softened view of Alzheimer's, then you should probably close the window now. I am a rather dark soul, with a rather dark sense of humour which I hope will show through in my blogging. Sometimes its what gets me through the day, my dark humour and thoughts. Twisted views and visions of what is going on, I find helps with the coping, that and the wine.
With all that being said, allow me to introduce myself. My name is Ali. I am 42 years old, mother of two lovely children , married to the same man for almost 16 years and daughter of Marjorie, 79 yrs old and in mid-moderate stage of Alzheimer's-related dementia. My father's name was Patrick. He died on April 1st, 2007, after a 5 year long, drawn-out and draining illness. I'll be honest. His illness almost killed me, my mother, my sister, my brothers..... it was a horrifying nightmare that, when over, was a huge relief. I miss my Dad terribly, but it was not a good finish to his life.
However, once over, and the dust began to settle, THAT was when we realized that something was not right with Mum. I brought her to live with me and the family, and after only 3 mos of living in close quarters with her, we had her see a specialist and VOILA..... Alzheimer's.
When I used to hear the word Alzheimer's, I would think of Ronald Regan, or our old neighbor on Rosewood. Those were the only two people I actually knew of that had the disease. I knew next to nothing about it, and once I started researching the actual disease, I realized that this was, in fact, a terminal illness. My Mother had just been handed a terminal sentence, with no cure, no hope for recovery. None. No drug therapy treatments, no surgery, no homeopathic solutions. Just the hope that one of the few drugs on the market right now, will help slow the progression of the disease. And if not, buckle up, because you will have a front row seat watching your loved one deteriorate on a daily basis. And there is absolutely NOTHING you can do about it. Nothing.
Once diagnosed, there are instantly, a million decisions to make. Depending on how advanced the diagnosis is, can the person live alone? Are they able to manage day to day activities such as bathing and eating? Are they able to manage their finances? If the answer to any of these questions is "yes", chances are that won't last for long. I made the monumental mistake of thinking that Mum would be able to live "independently", but very near to me. We set her up in a lovely condo less than two minutes away and started our journey towards "independent assisted living". Within a year, she was no where near independent, and the "assisted part" consisted of me running constantly, back and forth between houses for almost two years. Finally, one nite, as I was putting Mum to bed in my daughter's room (it had now been a full month since she had slept at her condo) I started to toy with the option of moving her in with us. A couple of weeks later, she fell in her condo, alone, and couldn't even dial my phone number, or 911, as she just didn't know how. I had left her there shortly after lunch, and returned a couple of hours later to pick her up for dinner. She had fallen in the kitchen and had suffered a major blow to her face. I phoned the real estate agent that evening, to help us start looking for a house big enough to house us all comfortably. My husband supported my decision to care for Mum at home, and not place her in a long-term care facility.
The overwhelming guilt I felt after her fall was quickly overshadowed by this next experience. We immediately took her to see our family doctor who recommended xrays of her face, nose and cheek. When the xray technician asked Marjorie what had happened to her, she replied "My daughter got mad and punched me in the face." What followed that statement was a pile of paperwork, two visits from the local law enforcement, local Adult protective services and a meeting (with my physician) to assure my innocence.
If I ever was to punch her, it would've been after all that!!
Which now brings us here, to the present. We've recently moved into what I like to call my "state of the art Alzheimer's house". We built it to specifically suit our family needs, as well as Mum's ever-shifting needs. And now we all live under one roof. The challenges are enormous, and the daily routine is never dull, but we are trying our best to make it work. As I blog, which I will try to do every day, I will re-cant and talk about the last three years, as well as the present, so as not to lose that whole period of time completely. Mum is physically, very healthy, and I imagine she will be with us for quite some time. I may be naive, but that's how I'm feeling about it today.
Today is laundry day here. I find that laundry is the type of task that Mum can still perform well, and feel good about. Just the folding. She folds the clothes impeccably. Every three or four minutes, she holds up an article of clothing and asks who it belongs to, I tell her and she resumes her duties. Laundry and he cutlery from the dishwasher. Two tasks that are not overwhelming and they can complete. I thank her profusely every time she completes a task and then remind her by thanking her again. It is very important to my Mum to keep busy and feel like she is needed. A small thing, but important for her.
My blogging time is up as Mum is now trying to feed my dog some toast and jam. Tomorrow I will log on again, to provide more historical stories along with the present ones. Maybe tomorrow I'll tell you about the crickets or the hair gel. Until then.... glass half full :)
Today is the day that I start to really focus on blogging my experience (s) with Alzheimer's Disease.
I am three years into the journey of caring for my elderly mother, diagnosed with AD in Sept 2007. First I must say a special thanks to RIM, and my most fabulous blackberry, because I have managed to document many, if not all of my experiences on my blackberry, which never leaves my side. I will now do my best to transpose those moments, and more, here onto my blog.
If you are looking at this blog for a sad, sentimental, empathetic, softened view of Alzheimer's, then you should probably close the window now. I am a rather dark soul, with a rather dark sense of humour which I hope will show through in my blogging. Sometimes its what gets me through the day, my dark humour and thoughts. Twisted views and visions of what is going on, I find helps with the coping, that and the wine.
With all that being said, allow me to introduce myself. My name is Ali. I am 42 years old, mother of two lovely children , married to the same man for almost 16 years and daughter of Marjorie, 79 yrs old and in mid-moderate stage of Alzheimer's-related dementia. My father's name was Patrick. He died on April 1st, 2007, after a 5 year long, drawn-out and draining illness. I'll be honest. His illness almost killed me, my mother, my sister, my brothers..... it was a horrifying nightmare that, when over, was a huge relief. I miss my Dad terribly, but it was not a good finish to his life.
However, once over, and the dust began to settle, THAT was when we realized that something was not right with Mum. I brought her to live with me and the family, and after only 3 mos of living in close quarters with her, we had her see a specialist and VOILA..... Alzheimer's.
When I used to hear the word Alzheimer's, I would think of Ronald Regan, or our old neighbor on Rosewood. Those were the only two people I actually knew of that had the disease. I knew next to nothing about it, and once I started researching the actual disease, I realized that this was, in fact, a terminal illness. My Mother had just been handed a terminal sentence, with no cure, no hope for recovery. None. No drug therapy treatments, no surgery, no homeopathic solutions. Just the hope that one of the few drugs on the market right now, will help slow the progression of the disease. And if not, buckle up, because you will have a front row seat watching your loved one deteriorate on a daily basis. And there is absolutely NOTHING you can do about it. Nothing.
Once diagnosed, there are instantly, a million decisions to make. Depending on how advanced the diagnosis is, can the person live alone? Are they able to manage day to day activities such as bathing and eating? Are they able to manage their finances? If the answer to any of these questions is "yes", chances are that won't last for long. I made the monumental mistake of thinking that Mum would be able to live "independently", but very near to me. We set her up in a lovely condo less than two minutes away and started our journey towards "independent assisted living". Within a year, she was no where near independent, and the "assisted part" consisted of me running constantly, back and forth between houses for almost two years. Finally, one nite, as I was putting Mum to bed in my daughter's room (it had now been a full month since she had slept at her condo) I started to toy with the option of moving her in with us. A couple of weeks later, she fell in her condo, alone, and couldn't even dial my phone number, or 911, as she just didn't know how. I had left her there shortly after lunch, and returned a couple of hours later to pick her up for dinner. She had fallen in the kitchen and had suffered a major blow to her face. I phoned the real estate agent that evening, to help us start looking for a house big enough to house us all comfortably. My husband supported my decision to care for Mum at home, and not place her in a long-term care facility.
The overwhelming guilt I felt after her fall was quickly overshadowed by this next experience. We immediately took her to see our family doctor who recommended xrays of her face, nose and cheek. When the xray technician asked Marjorie what had happened to her, she replied "My daughter got mad and punched me in the face." What followed that statement was a pile of paperwork, two visits from the local law enforcement, local Adult protective services and a meeting (with my physician) to assure my innocence.
If I ever was to punch her, it would've been after all that!!
Which now brings us here, to the present. We've recently moved into what I like to call my "state of the art Alzheimer's house". We built it to specifically suit our family needs, as well as Mum's ever-shifting needs. And now we all live under one roof. The challenges are enormous, and the daily routine is never dull, but we are trying our best to make it work. As I blog, which I will try to do every day, I will re-cant and talk about the last three years, as well as the present, so as not to lose that whole period of time completely. Mum is physically, very healthy, and I imagine she will be with us for quite some time. I may be naive, but that's how I'm feeling about it today.
Today is laundry day here. I find that laundry is the type of task that Mum can still perform well, and feel good about. Just the folding. She folds the clothes impeccably. Every three or four minutes, she holds up an article of clothing and asks who it belongs to, I tell her and she resumes her duties. Laundry and he cutlery from the dishwasher. Two tasks that are not overwhelming and they can complete. I thank her profusely every time she completes a task and then remind her by thanking her again. It is very important to my Mum to keep busy and feel like she is needed. A small thing, but important for her.
My blogging time is up as Mum is now trying to feed my dog some toast and jam. Tomorrow I will log on again, to provide more historical stories along with the present ones. Maybe tomorrow I'll tell you about the crickets or the hair gel. Until then.... glass half full :)
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