Wednesday, March 30, 2011
A Fine Line
I was outside the other day, when a brightly colored cardinal landed in our large cedar tree. It was a beautiful spring day and what had begun as a breeze had picked up and turned into a kite-crashing wind. The cedar branches rocked to and fro; sometimes pitching forward and down and then up and backward. Never once repeating the same pattern. All the while this red bird rode out the waves. There's a fine line between determination and stubbornness. Whichever his was I do not know, but I admired his resolve to remain steadfast whatever his reasoning.
Monday, March 21, 2011
If You Can Only Think of One Thing, Then Write About That..........
Most of you know my mother is sick. She has Alzheimer's. Without going into too many details, January 31st we turned another corner. There was no warning nor any rhyme or reason, no skipped medication, just a corner turned and a different avenue. One I was not prepared for. One I had skipped over in my plan. I started crying that day and haven't stopped. Because that was an avenue in the other direction and I lost a little more of her that day.
The next three weeks were a time of an emotional pyramid. Just when you thought you couldn't possibly feel anything new another one would arrive and land on top. So the pile just kept growing. I couldn't concentrate on the most simplest of tasks. I would repeat questions I had asked only minutes before. I was so preoccupied that I would put things in the wrong place. I caught myself walking in circles. Pacing. There were no more bad sections of a day, only bad days as a whole. On her first full bad day I cooked. I cooked, washed dishes, and repeated. Constantly. I did that all day on Friday, February 4th. I realized the reason for it later. Cooking involves steps or recipes to follow. I could follow the directions and I knew the next step was to clean up the mess but anything outside of a list I couldn't do.
It became apparent we were going to need help. There were things she wouldn't let me assist her in and we had waited for home health for going on three weeks with a promise of next week each time. No one showed up.
We called and set up an appointment with the nursing home. This is the same facility my mother worked in since I was sixteen until she retired. That's one of the reasons we chose it. She loved the work there and the people; not just co-workers but the residents also.
We went for the appointment and seen the renovations and changes they had made. The room we sat in while talking to the administrative coordinator is burned in my mind. I can tell you the wall paper pattern and color. I can tell you the flooring and where they covered a seam with medium brown caulk to seal it. A gray haired lady that walked by the window wore a pink and white striped shirt. I can tell you all these things yet I can not tell you the administrator's eye color. I couldn't look her in the eye. I tried but every time I did I felt like crying so in that event I pulled out my distraction technique. The one where I count things or study patterns and details. The whole thing felt surreal. I couldn't believe what I was doing. Other people have to do this but not me. You never expect to do that.
So I made it out the door and into the truck before I broke down. I'd failed her. I uprooted her and moved her with me to keep her out of the nursing home I just walked out of. I had failed her.
The next step was for the administrator to come out and evaluate her. That was to take place in the next few days and I was dying inside. I figured on my own home turf I was doomed. I'd be this blubbering puddle in front of her and God and everybody but didn't care. The day came and this calm came over me. I couldn't explain it. Charlie called me about every hour from work to check on me. I'd caught him watching me for days as if he expected me to fall apart into a million pieces any minute. But I told him I was alright. I couldn't explain the calmness but I embraced it. It was the first calm I had experienced in weeks. I figured it was exhaustion from lack of sleep but I embraced it nonetheless.
After the evaluation it was clear not only to us but now to the faculty that she was a candidate for the nursing home. So the papers were filed and again we waited; this time for state approval.
It was during this waiting period I watched her deteriorating. Not eating, becoming paranoid. Not sleeping, pacing. The pacing causing her feet to swell. She hallucinated and was easily agitated; that resulted in her breaking things. During this time I didn't want to go bed. I didn't want to sleep because then I'd dream. The dreams were always the same ones. In some, she was well and would let me hug her. In others I would beg her to tell me what to do. Help me make these decisions. Tell me what to do to fix it. I always woke up before she answered.
I started to become bitter and angry. I was angry at this disease from the start. I was angry at God for allowing her to have it. For what possible good could come of this. What could she have done in her life that was so bad that she deserved this. I was angry at my father for divorcing her so that I had to face this alone. I was angry at her for having me. I didn't ask to be born. I didn't ask for this hole in my heart. Anger is the easiest emotion. It takes some of the pressure off one's self. Replacing guilt or sadness with anger toward someone else is rewarding for a little while but it's just as draining and short lived.
Before we heard from the state another turning point occurred and she was admitted to the hospital.
This was rehab.
This was the rehab I was wanting to avoid.
To figure out what meds work and what meds don't, measures have to be taken in dementia patients and one of those is sedation. When we left her there I knew it was just a matter of time before that would be required. When dementia patients are agitated and violent they posed a danger to themselves and others. Others being employees and other patients. So injections are required and sometimes IVs. If an IV is required then a restraint has to be used to keep the patient from pulling out the IV. I knew all this, so rehab in my mind was not the end-all-be-all. But it was now not an option but a requirement.
Leaving her there was the worst feeling. It was the first day of kindergarten. I worried if they would be nice to her. I worried about her being lonely. I worried about her feeling abandoned; thinking we wouldn't return for her.
This was the first time I'd let someone else care for her. I wasn't used to this. As far back as I can remember I've protected her. Protected her from Daddy when his temper flared. Going up to see her when something arrived in the mail that she didn't understand. Mowing her yard, taking her to the store, taking her to the doctor. Taking care of her was just a part of my life and now I was giving that up to someone else. Now I had a new fear and a new emotion added to the growing mound of them I had collected in the last month.
She stayed one day shy of two weeks at the behavioral center and then she went to the nursing home. We picked her up at the hospital that morning, offered to take her to eat but she refused. So we drove down to the river and let her look at the water then proceeded to the nursing home.
At this point I'm still telling myself this is just a trial. That I can take her home with me at any point. I have the room. I have the desire to keep taking care of her. And with the medication she is on I can provide care for her. Meaning that she would allow me to care for her and assist her. I was still in denial. She's been there almost two weeks and that whole wing has a difficult time with her. Getting her to eat, getting her to sleep at night. So I now see it would have been wrong to have brought her home and failed yet again and then uproot her again to the nursing home. It was the right thing to do, the way we did it and I finally realize. I still don't like it but I see it. When would I have slept if she didn't sleep and when would I have taught my son during the day without sleep or with disruptions?
The problem of late has been how to answer people when they ask if you are handling it well. There seems to be no right answer for that question. You can't say "fine, I just put my mother in the nursing home so I'm doing just fine." You can't say " this is the hardest thing I've ever done." Because doesn't that just sound selfish? " Well you aren't the one in the nursing home now are you?" I imagine them saying. It takes too long to say I don't want to go to bed at night but yet don't want to get out of bed in the mornings. Because what right do I have to go on about my day when she is there? What right do I have to go on with my life when she wants to go home? Doing ordinary household chores brings such guilt that I find myself just sitting. I have to make myself wash dishes and sweep the floor but not with the joy I used to have at nesting. All of that is just too exhausting to say. So you smile and say "ok I guess" or "better". Because most of the time you can see them expectant and hoping you'll say fine. Because they don't want to hear about any sadness. It's just pleasantries. It's just good manners to ask so they do.
I go see her every day but it's still going to take her time and me time to adjust. I look forward to seeing her each day and always stay longer than I mean to. It's always hard to leave. She's still my mom. She has been for thirty-three years and just because she's there and I'm here doesn't mean that has changed. Neither one of us has resigned from our positions of mother-daughter employment.
I tell you this story because I don't share how I feel very often with anyone on the outside. I distract or laugh and joke all the while inside I'm dying. But I hope that by sharing these feelings that someone else going through something similar doesn't have to feel alone. Or feel ashamed about the different emotions that you are experiencing or have experienced. The truth is most of the doubt or the questions that anyone could have posed to me about my decisions need not have worried. I had already asked them to myself. I second guessed myself the whole way and still do. There is no manual with this disease. While there are simularities in cases, each person reacts differently. And each family has different circumstances. So second guessing is natural. It would be so much easier with a basic set of rules to follow.
As for the emotions, I hope that by sharing this it will help me to sort through them. Resolve the ones I can. Discard the ones I can. Use the ones I can and live with the rest.
By being more aware of my emotions and their causes and effects I hope to encourage others. You don't always get to pick and choose how to feel but you don't have to feel alone in them either.
I thank my husband who has been a sounding board, a punching bag, and a crying shoulder these last two months. My son for being the strongest person I know. I learn so much from him. Thanks to Daddy for saying it right not once but twice. Donnie and Francis for being there when I couldn't be and for the encouragment I needed. Wendy for calling on a weekend. And to my mom for that kiss good-bye that sustains me until the next time.
I in no way intend to take away from the ordeal my mother is going through nor the emotions she, herself, is experienceing. I can only account for my own...
Kristi
The next three weeks were a time of an emotional pyramid. Just when you thought you couldn't possibly feel anything new another one would arrive and land on top. So the pile just kept growing. I couldn't concentrate on the most simplest of tasks. I would repeat questions I had asked only minutes before. I was so preoccupied that I would put things in the wrong place. I caught myself walking in circles. Pacing. There were no more bad sections of a day, only bad days as a whole. On her first full bad day I cooked. I cooked, washed dishes, and repeated. Constantly. I did that all day on Friday, February 4th. I realized the reason for it later. Cooking involves steps or recipes to follow. I could follow the directions and I knew the next step was to clean up the mess but anything outside of a list I couldn't do.
It became apparent we were going to need help. There were things she wouldn't let me assist her in and we had waited for home health for going on three weeks with a promise of next week each time. No one showed up.
We called and set up an appointment with the nursing home. This is the same facility my mother worked in since I was sixteen until she retired. That's one of the reasons we chose it. She loved the work there and the people; not just co-workers but the residents also.
We went for the appointment and seen the renovations and changes they had made. The room we sat in while talking to the administrative coordinator is burned in my mind. I can tell you the wall paper pattern and color. I can tell you the flooring and where they covered a seam with medium brown caulk to seal it. A gray haired lady that walked by the window wore a pink and white striped shirt. I can tell you all these things yet I can not tell you the administrator's eye color. I couldn't look her in the eye. I tried but every time I did I felt like crying so in that event I pulled out my distraction technique. The one where I count things or study patterns and details. The whole thing felt surreal. I couldn't believe what I was doing. Other people have to do this but not me. You never expect to do that.
So I made it out the door and into the truck before I broke down. I'd failed her. I uprooted her and moved her with me to keep her out of the nursing home I just walked out of. I had failed her.
The next step was for the administrator to come out and evaluate her. That was to take place in the next few days and I was dying inside. I figured on my own home turf I was doomed. I'd be this blubbering puddle in front of her and God and everybody but didn't care. The day came and this calm came over me. I couldn't explain it. Charlie called me about every hour from work to check on me. I'd caught him watching me for days as if he expected me to fall apart into a million pieces any minute. But I told him I was alright. I couldn't explain the calmness but I embraced it. It was the first calm I had experienced in weeks. I figured it was exhaustion from lack of sleep but I embraced it nonetheless.
After the evaluation it was clear not only to us but now to the faculty that she was a candidate for the nursing home. So the papers were filed and again we waited; this time for state approval.
It was during this waiting period I watched her deteriorating. Not eating, becoming paranoid. Not sleeping, pacing. The pacing causing her feet to swell. She hallucinated and was easily agitated; that resulted in her breaking things. During this time I didn't want to go bed. I didn't want to sleep because then I'd dream. The dreams were always the same ones. In some, she was well and would let me hug her. In others I would beg her to tell me what to do. Help me make these decisions. Tell me what to do to fix it. I always woke up before she answered.
I started to become bitter and angry. I was angry at this disease from the start. I was angry at God for allowing her to have it. For what possible good could come of this. What could she have done in her life that was so bad that she deserved this. I was angry at my father for divorcing her so that I had to face this alone. I was angry at her for having me. I didn't ask to be born. I didn't ask for this hole in my heart. Anger is the easiest emotion. It takes some of the pressure off one's self. Replacing guilt or sadness with anger toward someone else is rewarding for a little while but it's just as draining and short lived.
Before we heard from the state another turning point occurred and she was admitted to the hospital.
This was rehab.
This was the rehab I was wanting to avoid.
To figure out what meds work and what meds don't, measures have to be taken in dementia patients and one of those is sedation. When we left her there I knew it was just a matter of time before that would be required. When dementia patients are agitated and violent they posed a danger to themselves and others. Others being employees and other patients. So injections are required and sometimes IVs. If an IV is required then a restraint has to be used to keep the patient from pulling out the IV. I knew all this, so rehab in my mind was not the end-all-be-all. But it was now not an option but a requirement.
Leaving her there was the worst feeling. It was the first day of kindergarten. I worried if they would be nice to her. I worried about her being lonely. I worried about her feeling abandoned; thinking we wouldn't return for her.
This was the first time I'd let someone else care for her. I wasn't used to this. As far back as I can remember I've protected her. Protected her from Daddy when his temper flared. Going up to see her when something arrived in the mail that she didn't understand. Mowing her yard, taking her to the store, taking her to the doctor. Taking care of her was just a part of my life and now I was giving that up to someone else. Now I had a new fear and a new emotion added to the growing mound of them I had collected in the last month.
She stayed one day shy of two weeks at the behavioral center and then she went to the nursing home. We picked her up at the hospital that morning, offered to take her to eat but she refused. So we drove down to the river and let her look at the water then proceeded to the nursing home.
At this point I'm still telling myself this is just a trial. That I can take her home with me at any point. I have the room. I have the desire to keep taking care of her. And with the medication she is on I can provide care for her. Meaning that she would allow me to care for her and assist her. I was still in denial. She's been there almost two weeks and that whole wing has a difficult time with her. Getting her to eat, getting her to sleep at night. So I now see it would have been wrong to have brought her home and failed yet again and then uproot her again to the nursing home. It was the right thing to do, the way we did it and I finally realize. I still don't like it but I see it. When would I have slept if she didn't sleep and when would I have taught my son during the day without sleep or with disruptions?
The problem of late has been how to answer people when they ask if you are handling it well. There seems to be no right answer for that question. You can't say "fine, I just put my mother in the nursing home so I'm doing just fine." You can't say " this is the hardest thing I've ever done." Because doesn't that just sound selfish? " Well you aren't the one in the nursing home now are you?" I imagine them saying. It takes too long to say I don't want to go to bed at night but yet don't want to get out of bed in the mornings. Because what right do I have to go on about my day when she is there? What right do I have to go on with my life when she wants to go home? Doing ordinary household chores brings such guilt that I find myself just sitting. I have to make myself wash dishes and sweep the floor but not with the joy I used to have at nesting. All of that is just too exhausting to say. So you smile and say "ok I guess" or "better". Because most of the time you can see them expectant and hoping you'll say fine. Because they don't want to hear about any sadness. It's just pleasantries. It's just good manners to ask so they do.
I go see her every day but it's still going to take her time and me time to adjust. I look forward to seeing her each day and always stay longer than I mean to. It's always hard to leave. She's still my mom. She has been for thirty-three years and just because she's there and I'm here doesn't mean that has changed. Neither one of us has resigned from our positions of mother-daughter employment.
I tell you this story because I don't share how I feel very often with anyone on the outside. I distract or laugh and joke all the while inside I'm dying. But I hope that by sharing these feelings that someone else going through something similar doesn't have to feel alone. Or feel ashamed about the different emotions that you are experiencing or have experienced. The truth is most of the doubt or the questions that anyone could have posed to me about my decisions need not have worried. I had already asked them to myself. I second guessed myself the whole way and still do. There is no manual with this disease. While there are simularities in cases, each person reacts differently. And each family has different circumstances. So second guessing is natural. It would be so much easier with a basic set of rules to follow.
As for the emotions, I hope that by sharing this it will help me to sort through them. Resolve the ones I can. Discard the ones I can. Use the ones I can and live with the rest.
By being more aware of my emotions and their causes and effects I hope to encourage others. You don't always get to pick and choose how to feel but you don't have to feel alone in them either.
I thank my husband who has been a sounding board, a punching bag, and a crying shoulder these last two months. My son for being the strongest person I know. I learn so much from him. Thanks to Daddy for saying it right not once but twice. Donnie and Francis for being there when I couldn't be and for the encouragment I needed. Wendy for calling on a weekend. And to my mom for that kiss good-bye that sustains me until the next time.
I in no way intend to take away from the ordeal my mother is going through nor the emotions she, herself, is experienceing. I can only account for my own...
Kristi
Friday, March 4, 2011
Tuesday, March 1, 2011
Gratitude
I don't say much about my mother. In fact, I have only a few posts about her. Alzheimer's takes away enough of one's dignity and I didn't want to add to that. I felt it would be disrespectful to her.
But the truth is I get jealous when I see my former classmates out shopping with their moms. Because mom was my shopping buddy; she was the one I would call if I had to make an unexpected run to town or grocery shopping, even yard saleing She was more than my mom, she was my best friend.
One day I spotted a friend of mine in town with her mother and the jealously popped up but I was instantly ashamed. This particular friend of mine was very close to her father and had lost him to cancer only a year or two earlier. They had a very close relationship and his death was almost devastating to her. So I was shamed in my quick reaction. At least I still have my mom; she's still here. She still gives hugs and she still says "I love you". Those are things to be grateful for. She may not always know who I am but she's always glad to make a new friend.
My husband keeps reminding me to stop looking at the big picture and focus on the small snapshots that are in front of me and learn to have gratitude for those.
My year's theme for 2011 was to be more aware; now it includes gratitude.
My Mom:
But the truth is I get jealous when I see my former classmates out shopping with their moms. Because mom was my shopping buddy; she was the one I would call if I had to make an unexpected run to town or grocery shopping, even yard saleing She was more than my mom, she was my best friend.
One day I spotted a friend of mine in town with her mother and the jealously popped up but I was instantly ashamed. This particular friend of mine was very close to her father and had lost him to cancer only a year or two earlier. They had a very close relationship and his death was almost devastating to her. So I was shamed in my quick reaction. At least I still have my mom; she's still here. She still gives hugs and she still says "I love you". Those are things to be grateful for. She may not always know who I am but she's always glad to make a new friend.
My husband keeps reminding me to stop looking at the big picture and focus on the small snapshots that are in front of me and learn to have gratitude for those.
My year's theme for 2011 was to be more aware; now it includes gratitude.
My Mom:
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