From Friday, August 29, 2014, reposted here from my old blog. Its been one year or so, give or take a few weeks. I could hardly read this without all of the moments and flooding of tears hitting me all at once.
The Next Phase.
It has been probably the most difficult and stressful summer, besides the summer of 2008. (we all know what was going on in Sara's world back then.)
After my mom got sick the first week of July, spent a week at HCGH, then about a month at Encore for therapy, she was discharged home to us. Oh.my.God.
Let me preface this all by saying a few things. I love my mother more then anything on this planet. She is my flesh and blood, she birthed me, raised me, and cared for me like any wonderful mother would. She didn't know she would someday end up with one of the most challenging diseases out there. She lived her life and loved her family. She tried to be a good person, she spoke the truth, and she took care of me as best as she could. And knowing that she needed me more then ever, I was able to get through the most difficult 2 weeks of my life.
The reason it was so hard is because my poor mother with late stages of Alzheimer's needed 24/7 care. Couldn't leave her alone, had to do everything for her or with her. And being a registered nurse you would think this would be easy for me. WRONG. I knew what to do, I knew mostly how to do it, but finding the strength and the energy and time to do it all with 100% was the challenge. Its even more difficult taking care of your own mother; when it's a stranger and you can leave after 12 hours it's a different ball game.
It started off with just me watching her; then Travis had to help because, I had to sleep...so we took turns staying with her downstairs. My 2 sisters didn't do anything to help in the home--Kelly would come by afterwork for a couple hours if that and just sit with her and basically be annoyed that she had to do it. My other sister didn't even come out to visit until I had to tell her I needed help. After all, I got FMLA granted for me to excuse me from work while I took care of her. I was out of work most of August. Without pay after a certain point. MAJOR sacrifice. We also had to cancel our week long vacation to Williamsburg that we set up back in January; we didn't get any money back from that. Meanwhile both of brothers were able to go on their summer vacations mind you...
I had a huge fight with my dad about this, because he didn't seem to get it that it was exhausting me mentally and physically after 36 hours of doing it, and we needed help from our friends at Visiting Angels. He took his usual stubborn stance of not wanting to pay money for help; he seemed to have this idea in his head that a caretaker would be $50 an hour. Its obviously not, its $21/hour. And the V.A. pays for 10 hours a week free. He seemed to think I would only need a 10 hour break every week...for however many weeks this would go on. Well thats another ball game right there. Long story short--we were able to convince him it wouldn't kill his bank account to get me some help. We were able to set that up; was it worth the horrible fight in which I let him (verbally) have it? No, not at all. I regret saying some of things I said; he said a lot of hurtful shit too. But we survived, got through it, and it should literally be the last fight we'll ever have. There's no reason to yell at each other like that at his age. My brother Mark was extremely helpful and got me to calm down and see it from his point of view. Thank God for that.
So meanwhile, my mom is being herself; lots of repetitive questions--usually the same 10 over and over....
"Where are my shoes?"
"Where is my bed?"
"When are we going home?"
"What do we do now?"
"My legs are cold!"
"What are you going to do?"
"How do I turn the TV off/on?"
"Where is Bob?"
"Where's the dog?"
"Where's my address book?"
"This isn't my home!"
"When are we going to get home?"
This would go on the entire time she was awake. These ideas and topics were very worrisome to her, she just couldn't help it. Although sometimes I know she did it just to have something to talk about and get attention for. She can't help it, I know. But, for the past 3-5 years, these questions were generally asked multiple times during any interaction I had with her. So yes, it gets really fucking old hearing it over and over and over and over again. It tries your patience. You can't get anything done when you leave the room because she will sit in her recliner and scream these questions until you answer. A normal human being wouldn't mind answering these questions a few times, but after awhile, your answers aren't good enough because they aren't being remembered due to the obvious short term memory loss. So as a caretaker, it was the biggest challenge of all.
Due to her fall risk and being on Coumadin, we wouldn't let her ambulate on her own, hence the need to watch her 24/7. Travis invested in a really nice video cam so we could keep an eye on her while we left the room and she was alone. Most of the time she was good; she'd attempt to stand up and successfully did it twice without falling, but we'd usually dash into the room and tell her to stop. Also, while she was sleeping we could watch her, I could go upstairs and shower or rest or do stuff in the kitchen and keep an eye on her---it was viewable on a website, so I watched her on my phone and on our laptops. Brilliant idea. We'll just keep the camera for when we have babies.
The second challenge was the foley catheter she had in since she was at HCGH. (It was the third or fourth one.) Supposedly the Rehab nurses did "voiding trials" and she wouldn't/couldn't pee. So the cath stayed in. Brought her home with it; no one wanted to empty it but me. My sister acted like it was poison and that irritated me because she knew it pissed me off that she didn't even try to empty it and she didn't really care. So at least the first 10 days or so we didn't have to run to the potty all the time, and I could monitor her output. The Flomax must have helped, she'd been put on that at the hospital.
We had home healthcare from Hopkins following her and my dad, so they came to the house frequently; PT, OT, drew her blood for the lab work, SW, etc. It was helpful. Sophia the RN was excellent and thank God for people like her that do that job. (During all of this, my dad had her as well because he had a Pleurex Cath installed in his right rib area to drain the fluid build up and help his pleural space close up more. So he got a lot of attention at the same time.) Within a week of her being home my brother convinced my dad that Assisted Living was the ONLY option for my mom, so my job was to find one. I pulled out the books that a case manager at HCGH gave me and started picking AL places with Alz care out and calling them. Most of the time the residential homes are the best options because they are more intimate, better quality, and cheaper. I lucked out by finding Carolyn Caswell at Country Gardens Assisted Living in Highland, MD. She had 2 or 3 beds open; Travis and I went 2 days later to visit. (We visited another one but it clearly wasn't for us.) So I got the paperwork, had Terri, Mike and Kelly visit it a few days later and my dad agreed and signed the contract. In order to get her in, we had to get some stuff filled out by her PCP; I had to get a MOLST form done. Another seriously painful thing to do, picking what options she would have if she went into cardiac arrest, etc. I got through that meeting with Dr. Gibbons without crying, so I'm proud of myself. I cried and sobbed quite a bit during my baby-sitting time; so many emotions and memories and thoughts.
Before she moved in, she had to see the eye doctor since it had been forever; come to find out she has bilateral cataracts. (OH lovely!) The next day I took her foley out and prayed that she would pee on her own. Sophia ordered straight cath kids just in case; I wasn't thrilled about the possibility of cathing her, I did it once as a practice and its as easy; I of course had made it into a big deal that it really wasn't. After a night of diarrhea, she was able to pee in the potty without issue. Halleluyer. The bedside commode was the best invention ever too, btw.
Sunday August 25, 2014 we packed my mom up and set out for Highland, which is 15 minutes door to door. The saddest part was when we were getting ready to walk out the door and my mom looks at me and says "Where are we going?" Innocent enough question.
It literally knocked the wind out of me to hear this; she had no idea where we were going and why. Knowing that she is so vulnerable and dependent on me/us is incredibly hard. I had to walk out the door and get in the car and let Terri take it from there. The house she lived in for 43 years would no longer be her only home--now she would go to Ms. Carolyn's house and live there. Its so lonely here without her; when I stop to think about it I usually tear up.
Another difficult aspect of Alzheimer's is seeing your loved one mentally decline and deteriorate back to almost an infant in some cases. Your mom, the one who was your boss, your rock, your advice-giver, your first love, was now gone, even though her body stood before me. I still have a really hard time remembering what she was like mentally before she got diagnosed. I was young and naive back on 2004; I didn't realize the severity of her illness and what road we had ahead of us. If there is one thing I could do over again is I would have spent more time with her and really tried to live in the moment with her. Now that I'm 34, getting married (sometime soon I hope), thinking about babies, wanting to do other thing in life---you know, things you would want to discuss with your mom. Get her advice, her opinions, hear what she went through, share the excitement with her, etc. That is one thing I will never get to experience. I'm sad for this, and mad that this fucking horrid disease has done this to us. My siblings all got to experience this stuff; the last really great memories I have of her and I being together was when we painted my purple bedroom and decorated it in the summer of 2000. I remember when she would take great pride in ironing my nursing uniforms (those hideous white tops!) and all of the awesome things she took the time to pick out and buy me from QVC. I still have some of them; she was trying to prepare me for the day when I would move out on my own. Thats what mothers do, they help their kids with that...they take pride in guiding their kids through those phases in young adulthood. For that I will be forever grateful I have a few memories, its better then nothing at all. I just wish she was still "here" to help me right now. I know she would really enjoy Travis, and I know she would really enjoy hearing about where I work and what I do. I just wish I could pick up the phone and call her in the evening and say "look at the Cook's Essentials on QVC right now! I'm going to order one of those..." or "look at that pretty Diamonique necklace!" I would love to cook with her, back with her. Pick out a wedding dress, pick out baby names. Tell her about my patients from work; tell her about the books I read; anything. Anything besides the answers to "Where are my shoes?" So to me the cruelest part of Alz is the tease of having them physically with you, but almost a total shell of the worst possible form of their former self. Even from the start of the diagnosis, you have that fear and in the back of your head that something bad is going to happen, you just don't know when and how. And thats sort of how this disease has gone--didn't expect earlier this year that this summer would be so rough for her. I did the whole "I should have done this...should have done that...should have known" game; I have a lot of guilt for not helping her more then I did. I had a lot of anger towards my siblings for not caring or not doing as much of the grunt work as I was doing. Its easy to come up for 2 hours and take her to dinner; try bathing her, putting her to bed, taking her to an appointment, helping her just get on the bus to go to the Senior Center. Giving her medications to her, picking out her food, cutting it up, hoping she will eat it, etc. Those are the things I did a lot of. Cleaning her house, that she once cleaned and took care of. Keeping her safe and out of trouble, keeping her occupied. Helping her stay calm and happy. The type of stuff that is difficult to do on a daily basis; I just needed some help with that. Support. Moral support, anything. I felt alone a lot of times. Like when my sister would have the task of bathing her on a Sunday because Monday she would go out with her Visiting Angel's companion Louise, and then Winter Growth on Tuesday's, etc. and she would just not do it, not call me, not tell me, and I'd find out at the last minute before I was driving to work that it didn't get done. That was the most frustrating thing ever, and having it repeatedly happen and no one correcting it, and then getting pissed at me...that was the last straw for me. Fortunately this is all in the past. I don't have to do a lot of that stuff with them anymore; working with 2 disorganized and irresponsible people is hard for me. If I know something has to be done and I can't do it, I make a plan b. I don't just let it go and pretend it's not happening. So that being a thing of the past I can at least put that energy into myself once again.
I'm not saying that my sister didn't help and didn't try to do the best she could do; I really don't know if she did the best she could, but at least she was there and could help lighten the load at times. Some people have no one. I think people that have a hard time taking care of themselves that are thrown into something like being a caretaker for a loved one is a lot harder then for someone like me who is a nurse, who is relatively organized, and relatively able to plan a week ahead of time. One thing I would do over again is get Visiting Angels in sooner to help. Regardless of what my dad thought, we needed it a few years ago. Now I know that my brother is the key to getting stuff like that accomplished. But that is also in the past.
So from hear on out, it's the next phase. Is it the last phase? I don't know. Is there more then one phase ahead of us? I don't know. But one thing I can do now is try to reclaim some of my free time to help myself so that I don't end up with early onset dementia/Alz.
That and getting married, buying a house, having babies, changing careers, keeping my dad alive, etc. Those are the things on my plate now that I'm free from caretaker daughter.
Since I am planning to have bariatric surgery again early next year, I have to really focus on that. Which means following the program, exercising, etc etc. If I can't get my weight down and start becoming a healthier person, I won't be able to get pregnant and have babies and carry on in my life. I am very interested in disease prevention--not curing--all of the horrible stuff that happens to us as we age and if we are overweight. I don't even want to go down the high blood pressure road; the type 2 diabetes world; the arthritis road, and especially the dementia road.
So here's to the Next Phase in life, may it be better than the last and make progress towards my goals.
After my mom got sick the first week of July, spent a week at HCGH, then about a month at Encore for therapy, she was discharged home to us. Oh.my.God.
Let me preface this all by saying a few things. I love my mother more then anything on this planet. She is my flesh and blood, she birthed me, raised me, and cared for me like any wonderful mother would. She didn't know she would someday end up with one of the most challenging diseases out there. She lived her life and loved her family. She tried to be a good person, she spoke the truth, and she took care of me as best as she could. And knowing that she needed me more then ever, I was able to get through the most difficult 2 weeks of my life.
The reason it was so hard is because my poor mother with late stages of Alzheimer's needed 24/7 care. Couldn't leave her alone, had to do everything for her or with her. And being a registered nurse you would think this would be easy for me. WRONG. I knew what to do, I knew mostly how to do it, but finding the strength and the energy and time to do it all with 100% was the challenge. Its even more difficult taking care of your own mother; when it's a stranger and you can leave after 12 hours it's a different ball game.
It started off with just me watching her; then Travis had to help because, I had to sleep...so we took turns staying with her downstairs. My 2 sisters didn't do anything to help in the home--Kelly would come by afterwork for a couple hours if that and just sit with her and basically be annoyed that she had to do it. My other sister didn't even come out to visit until I had to tell her I needed help. After all, I got FMLA granted for me to excuse me from work while I took care of her. I was out of work most of August. Without pay after a certain point. MAJOR sacrifice. We also had to cancel our week long vacation to Williamsburg that we set up back in January; we didn't get any money back from that. Meanwhile both of brothers were able to go on their summer vacations mind you...
I had a huge fight with my dad about this, because he didn't seem to get it that it was exhausting me mentally and physically after 36 hours of doing it, and we needed help from our friends at Visiting Angels. He took his usual stubborn stance of not wanting to pay money for help; he seemed to have this idea in his head that a caretaker would be $50 an hour. Its obviously not, its $21/hour. And the V.A. pays for 10 hours a week free. He seemed to think I would only need a 10 hour break every week...for however many weeks this would go on. Well thats another ball game right there. Long story short--we were able to convince him it wouldn't kill his bank account to get me some help. We were able to set that up; was it worth the horrible fight in which I let him (verbally) have it? No, not at all. I regret saying some of things I said; he said a lot of hurtful shit too. But we survived, got through it, and it should literally be the last fight we'll ever have. There's no reason to yell at each other like that at his age. My brother Mark was extremely helpful and got me to calm down and see it from his point of view. Thank God for that.
So meanwhile, my mom is being herself; lots of repetitive questions--usually the same 10 over and over....
"Where are my shoes?"
"Where is my bed?"
"When are we going home?"
"What do we do now?"
"My legs are cold!"
"What are you going to do?"
"How do I turn the TV off/on?"
"Where is Bob?"
"Where's the dog?"
"Where's my address book?"
"This isn't my home!"
"When are we going to get home?"
This would go on the entire time she was awake. These ideas and topics were very worrisome to her, she just couldn't help it. Although sometimes I know she did it just to have something to talk about and get attention for. She can't help it, I know. But, for the past 3-5 years, these questions were generally asked multiple times during any interaction I had with her. So yes, it gets really fucking old hearing it over and over and over and over again. It tries your patience. You can't get anything done when you leave the room because she will sit in her recliner and scream these questions until you answer. A normal human being wouldn't mind answering these questions a few times, but after awhile, your answers aren't good enough because they aren't being remembered due to the obvious short term memory loss. So as a caretaker, it was the biggest challenge of all.
Due to her fall risk and being on Coumadin, we wouldn't let her ambulate on her own, hence the need to watch her 24/7. Travis invested in a really nice video cam so we could keep an eye on her while we left the room and she was alone. Most of the time she was good; she'd attempt to stand up and successfully did it twice without falling, but we'd usually dash into the room and tell her to stop. Also, while she was sleeping we could watch her, I could go upstairs and shower or rest or do stuff in the kitchen and keep an eye on her---it was viewable on a website, so I watched her on my phone and on our laptops. Brilliant idea. We'll just keep the camera for when we have babies.
The second challenge was the foley catheter she had in since she was at HCGH. (It was the third or fourth one.) Supposedly the Rehab nurses did "voiding trials" and she wouldn't/couldn't pee. So the cath stayed in. Brought her home with it; no one wanted to empty it but me. My sister acted like it was poison and that irritated me because she knew it pissed me off that she didn't even try to empty it and she didn't really care. So at least the first 10 days or so we didn't have to run to the potty all the time, and I could monitor her output. The Flomax must have helped, she'd been put on that at the hospital.
We had home healthcare from Hopkins following her and my dad, so they came to the house frequently; PT, OT, drew her blood for the lab work, SW, etc. It was helpful. Sophia the RN was excellent and thank God for people like her that do that job. (During all of this, my dad had her as well because he had a Pleurex Cath installed in his right rib area to drain the fluid build up and help his pleural space close up more. So he got a lot of attention at the same time.) Within a week of her being home my brother convinced my dad that Assisted Living was the ONLY option for my mom, so my job was to find one. I pulled out the books that a case manager at HCGH gave me and started picking AL places with Alz care out and calling them. Most of the time the residential homes are the best options because they are more intimate, better quality, and cheaper. I lucked out by finding Carolyn Caswell at Country Gardens Assisted Living in Highland, MD. She had 2 or 3 beds open; Travis and I went 2 days later to visit. (We visited another one but it clearly wasn't for us.) So I got the paperwork, had Terri, Mike and Kelly visit it a few days later and my dad agreed and signed the contract. In order to get her in, we had to get some stuff filled out by her PCP; I had to get a MOLST form done. Another seriously painful thing to do, picking what options she would have if she went into cardiac arrest, etc. I got through that meeting with Dr. Gibbons without crying, so I'm proud of myself. I cried and sobbed quite a bit during my baby-sitting time; so many emotions and memories and thoughts.
Before she moved in, she had to see the eye doctor since it had been forever; come to find out she has bilateral cataracts. (OH lovely!) The next day I took her foley out and prayed that she would pee on her own. Sophia ordered straight cath kids just in case; I wasn't thrilled about the possibility of cathing her, I did it once as a practice and its as easy; I of course had made it into a big deal that it really wasn't. After a night of diarrhea, she was able to pee in the potty without issue. Halleluyer. The bedside commode was the best invention ever too, btw.
Sunday August 25, 2014 we packed my mom up and set out for Highland, which is 15 minutes door to door. The saddest part was when we were getting ready to walk out the door and my mom looks at me and says "Where are we going?" Innocent enough question.
It literally knocked the wind out of me to hear this; she had no idea where we were going and why. Knowing that she is so vulnerable and dependent on me/us is incredibly hard. I had to walk out the door and get in the car and let Terri take it from there. The house she lived in for 43 years would no longer be her only home--now she would go to Ms. Carolyn's house and live there. Its so lonely here without her; when I stop to think about it I usually tear up.
Another difficult aspect of Alzheimer's is seeing your loved one mentally decline and deteriorate back to almost an infant in some cases. Your mom, the one who was your boss, your rock, your advice-giver, your first love, was now gone, even though her body stood before me. I still have a really hard time remembering what she was like mentally before she got diagnosed. I was young and naive back on 2004; I didn't realize the severity of her illness and what road we had ahead of us. If there is one thing I could do over again is I would have spent more time with her and really tried to live in the moment with her. Now that I'm 34, getting married (sometime soon I hope), thinking about babies, wanting to do other thing in life---you know, things you would want to discuss with your mom. Get her advice, her opinions, hear what she went through, share the excitement with her, etc. That is one thing I will never get to experience. I'm sad for this, and mad that this fucking horrid disease has done this to us. My siblings all got to experience this stuff; the last really great memories I have of her and I being together was when we painted my purple bedroom and decorated it in the summer of 2000. I remember when she would take great pride in ironing my nursing uniforms (those hideous white tops!) and all of the awesome things she took the time to pick out and buy me from QVC. I still have some of them; she was trying to prepare me for the day when I would move out on my own. Thats what mothers do, they help their kids with that...they take pride in guiding their kids through those phases in young adulthood. For that I will be forever grateful I have a few memories, its better then nothing at all. I just wish she was still "here" to help me right now. I know she would really enjoy Travis, and I know she would really enjoy hearing about where I work and what I do. I just wish I could pick up the phone and call her in the evening and say "look at the Cook's Essentials on QVC right now! I'm going to order one of those..." or "look at that pretty Diamonique necklace!" I would love to cook with her, back with her. Pick out a wedding dress, pick out baby names. Tell her about my patients from work; tell her about the books I read; anything. Anything besides the answers to "Where are my shoes?" So to me the cruelest part of Alz is the tease of having them physically with you, but almost a total shell of the worst possible form of their former self. Even from the start of the diagnosis, you have that fear and in the back of your head that something bad is going to happen, you just don't know when and how. And thats sort of how this disease has gone--didn't expect earlier this year that this summer would be so rough for her. I did the whole "I should have done this...should have done that...should have known" game; I have a lot of guilt for not helping her more then I did. I had a lot of anger towards my siblings for not caring or not doing as much of the grunt work as I was doing. Its easy to come up for 2 hours and take her to dinner; try bathing her, putting her to bed, taking her to an appointment, helping her just get on the bus to go to the Senior Center. Giving her medications to her, picking out her food, cutting it up, hoping she will eat it, etc. Those are the things I did a lot of. Cleaning her house, that she once cleaned and took care of. Keeping her safe and out of trouble, keeping her occupied. Helping her stay calm and happy. The type of stuff that is difficult to do on a daily basis; I just needed some help with that. Support. Moral support, anything. I felt alone a lot of times. Like when my sister would have the task of bathing her on a Sunday because Monday she would go out with her Visiting Angel's companion Louise, and then Winter Growth on Tuesday's, etc. and she would just not do it, not call me, not tell me, and I'd find out at the last minute before I was driving to work that it didn't get done. That was the most frustrating thing ever, and having it repeatedly happen and no one correcting it, and then getting pissed at me...that was the last straw for me. Fortunately this is all in the past. I don't have to do a lot of that stuff with them anymore; working with 2 disorganized and irresponsible people is hard for me. If I know something has to be done and I can't do it, I make a plan b. I don't just let it go and pretend it's not happening. So that being a thing of the past I can at least put that energy into myself once again.
I'm not saying that my sister didn't help and didn't try to do the best she could do; I really don't know if she did the best she could, but at least she was there and could help lighten the load at times. Some people have no one. I think people that have a hard time taking care of themselves that are thrown into something like being a caretaker for a loved one is a lot harder then for someone like me who is a nurse, who is relatively organized, and relatively able to plan a week ahead of time. One thing I would do over again is get Visiting Angels in sooner to help. Regardless of what my dad thought, we needed it a few years ago. Now I know that my brother is the key to getting stuff like that accomplished. But that is also in the past.
So from hear on out, it's the next phase. Is it the last phase? I don't know. Is there more then one phase ahead of us? I don't know. But one thing I can do now is try to reclaim some of my free time to help myself so that I don't end up with early onset dementia/Alz.
That and getting married, buying a house, having babies, changing careers, keeping my dad alive, etc. Those are the things on my plate now that I'm free from caretaker daughter.
Since I am planning to have bariatric surgery again early next year, I have to really focus on that. Which means following the program, exercising, etc etc. If I can't get my weight down and start becoming a healthier person, I won't be able to get pregnant and have babies and carry on in my life. I am very interested in disease prevention--not curing--all of the horrible stuff that happens to us as we age and if we are overweight. I don't even want to go down the high blood pressure road; the type 2 diabetes world; the arthritis road, and especially the dementia road.
So here's to the Next Phase in life, may it be better than the last and make progress towards my goals.
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