Sometimes, the weight of all that I cannot speak, all that I cannot share, and all that shames me, explodes into pain that cannot be soothed, cannot be contained, and brings me to my knees with uncontrollable tears.
I know that I am loved, yet I feel alone. I know that there are answers, yet I cannot find them. I know that I need help, yet I cannot ask.
Thursday, February 26, 2015
Sunday, February 22, 2015
Catch up time...
I'm not going to lie and say that things have been going smoothly. Mom's still home everyday with me since her last battle with pneumonia. We are having new challenges and old ones are worsening.
-My dear cousin loaned us a lightweight wheelchair. Mom hasn't regained her strength from the first bout of pneumonia and was having a difficult time walking even short distances. It was a challenge to do something as simple as running to the grocery store. So, the use of the wheelchair was a good solution. Or it should have been. While rolling Mom around the store helped with the mobility problem, it did not help with the attitude problem. We tried 3 different times to shop this way and left the store in frustration each time due to Mom's loud screaming. If we stopped pushing she began yelling. Loudly. At us. At strangers. At shelves. At products. You get the idea. So, we will move on and find another way.
-Mom's eating is getting worse. She demands food practically non-stop. She screams at me that she is "hunner" while she has food in her mouth. I won't say that she isn't eating. We get food into her. She just doesn't realize that she has eaten. And the yelling and negativity are taking a toll on me.
-I hesitate to type this one. Each time that I talk about her sleeping habits, we have a horrible night. But, she really has been sleeping well. If I have one piece of advice to share with other Alzheimer's caregivers it would be this: Make sure your loved one is in bed within 10-15 minutes of giving them their sleep medications. Dementia patients will fight the effects of sleeping pills to the point that their bodies don't even recognize that they are in their system. It's crucial that they are in bed when the pills begin to take effect. (Thank you to the lady in my support group for sharing this info. You've made my life so much easier.)
-This one is difficult to talk about, but I promised myself that I would share it all on this blog, no matter how painful it is to discuss. In the past year, I have realized that the unspoken, embarrassing, and most difficult part of being a caregiver isn't in the giving of care. It is the financial toll that falls upon so many caregivers. My savings are gone. The only money I have coming to me is through my mom and her care. And it isn't much. Take her out of the picture and I have no income. And no guarantee of a job to replace this one. I went into this as the sole provider for my family. I have to come out of it the same way.
I am sharing this to explain why we haven't placed Mom in a permanent home. I know people have wondered. I find myself in a Catch-22. I can't place her until I have a job. I can't find a job until she is placed. It's just that simple. And that complicated. So, until I find a solution she will be here, yelling at strangers, screaming for food, and sleeping better than she has in years.
-My dear cousin loaned us a lightweight wheelchair. Mom hasn't regained her strength from the first bout of pneumonia and was having a difficult time walking even short distances. It was a challenge to do something as simple as running to the grocery store. So, the use of the wheelchair was a good solution. Or it should have been. While rolling Mom around the store helped with the mobility problem, it did not help with the attitude problem. We tried 3 different times to shop this way and left the store in frustration each time due to Mom's loud screaming. If we stopped pushing she began yelling. Loudly. At us. At strangers. At shelves. At products. You get the idea. So, we will move on and find another way.
-Mom's eating is getting worse. She demands food practically non-stop. She screams at me that she is "hunner" while she has food in her mouth. I won't say that she isn't eating. We get food into her. She just doesn't realize that she has eaten. And the yelling and negativity are taking a toll on me.
-I hesitate to type this one. Each time that I talk about her sleeping habits, we have a horrible night. But, she really has been sleeping well. If I have one piece of advice to share with other Alzheimer's caregivers it would be this: Make sure your loved one is in bed within 10-15 minutes of giving them their sleep medications. Dementia patients will fight the effects of sleeping pills to the point that their bodies don't even recognize that they are in their system. It's crucial that they are in bed when the pills begin to take effect. (Thank you to the lady in my support group for sharing this info. You've made my life so much easier.)
-This one is difficult to talk about, but I promised myself that I would share it all on this blog, no matter how painful it is to discuss. In the past year, I have realized that the unspoken, embarrassing, and most difficult part of being a caregiver isn't in the giving of care. It is the financial toll that falls upon so many caregivers. My savings are gone. The only money I have coming to me is through my mom and her care. And it isn't much. Take her out of the picture and I have no income. And no guarantee of a job to replace this one. I went into this as the sole provider for my family. I have to come out of it the same way.
I am sharing this to explain why we haven't placed Mom in a permanent home. I know people have wondered. I find myself in a Catch-22. I can't place her until I have a job. I can't find a job until she is placed. It's just that simple. And that complicated. So, until I find a solution she will be here, yelling at strangers, screaming for food, and sleeping better than she has in years.
Monday, February 16, 2015
Whoda thunk...
I was just thinking...
All of those years ago when I was born into a family of all of those boys, who would have thought that I would be the one with the cojones to do what needed to be done.
All of those years ago when I was born into a family of all of those boys, who would have thought that I would be the one with the cojones to do what needed to be done.
Saturday, January 31, 2015
The hard choices...
Mom is sick again. We have been careful to keep the yuckies that are everywhere this time of year from her. Apparently, the yuckies are more clever. This time she brought them home to us. Not wanting to put her through another month long hospital ordeal like the last time she got sick, I was at urgent care the second day of her cold. But, it was already too late. It had already turned into pneumonia.
The doctor we saw was wonderful. He listened to me when I told him of the experience in November when they basically strapped her down for a month in order to treat her for pneumonia. He then allowed me to make the choice of whether to treat her at home or to send her to the hospital. He politely, and tactfully, spoke about reaching a point that going through heroic measures in cases like Mom's is not always merciful or in her best interest. I am so grateful for his compassion and understanding. I asked whether I could be held legally accountable for not admitting her to the hospital if she ended up worsening. His response was that he, as her attending physician, at this time, did not see the benefit of hospitalization for someone with Alzheimer's that is as advanced as Mom's. He added that restraining someone who has a terminal disease and has no ability to understand why she is being restrained, just to treat her for a secondary condition, was cruel. He made notes in her chart in support of my decision to treat her at home. As long as she is comfortable and doesn't worsen, she will be at home.
Mom has advanced Alzheimer's. She is terminal. I don't want her to die. I truly don't. But, I don't want her to live the way she is living. Scratch that. She isn't living. She is existing. What little dignity that Alzheimer's has left her will soon be a memory. There is no hope of a cure. There won't be in her lifetime. But, I do want my mother to find peace. And if that means that I won't do everything in my power to "save" her, then so be it.
The doctor we saw was wonderful. He listened to me when I told him of the experience in November when they basically strapped her down for a month in order to treat her for pneumonia. He then allowed me to make the choice of whether to treat her at home or to send her to the hospital. He politely, and tactfully, spoke about reaching a point that going through heroic measures in cases like Mom's is not always merciful or in her best interest. I am so grateful for his compassion and understanding. I asked whether I could be held legally accountable for not admitting her to the hospital if she ended up worsening. His response was that he, as her attending physician, at this time, did not see the benefit of hospitalization for someone with Alzheimer's that is as advanced as Mom's. He added that restraining someone who has a terminal disease and has no ability to understand why she is being restrained, just to treat her for a secondary condition, was cruel. He made notes in her chart in support of my decision to treat her at home. As long as she is comfortable and doesn't worsen, she will be at home.
Mom has advanced Alzheimer's. She is terminal. I don't want her to die. I truly don't. But, I don't want her to live the way she is living. Scratch that. She isn't living. She is existing. What little dignity that Alzheimer's has left her will soon be a memory. There is no hope of a cure. There won't be in her lifetime. But, I do want my mother to find peace. And if that means that I won't do everything in my power to "save" her, then so be it.
Thursday, January 8, 2015
A fun evening...
It's been a fun evening. No, really.
-I heard a quiet whooshing sound a little bit ago. It lasted about 6 seconds. Silence. Whooshing. Silence. Whooshing. I got up to see where it was coming from and found Mom in the hall. She had her mouth next to the switch and was blowing on it. I guess she was trying to "turn it on".
-While I was sitting in my usual spot on the love seat, blocking Mom's escape route, she pointed at my arm and said, "Excuse me. Would you mind if I broke your right wing? I'd really like to crush it."
-Awhile later she was sitting "quietly" across from me, looked up and said, "I can't wait until I get my fingers all over you." After the incident in the hall, I let that one pass.
-And, finally, while Katie and I were playing fetch with the dog, she yelled, "Stop it! We don't use animals for sex!"
I'm glad she remembers important things.
-I heard a quiet whooshing sound a little bit ago. It lasted about 6 seconds. Silence. Whooshing. Silence. Whooshing. I got up to see where it was coming from and found Mom in the hall. She had her mouth next to the switch and was blowing on it. I guess she was trying to "turn it on".
-While I was sitting in my usual spot on the love seat, blocking Mom's escape route, she pointed at my arm and said, "Excuse me. Would you mind if I broke your right wing? I'd really like to crush it."
-Awhile later she was sitting "quietly" across from me, looked up and said, "I can't wait until I get my fingers all over you." After the incident in the hall, I let that one pass.
-And, finally, while Katie and I were playing fetch with the dog, she yelled, "Stop it! We don't use animals for sex!"
I'm glad she remembers important things.
Tuesday, January 6, 2015
10 signs...
10 signs that I am a caregiver for an Alzheimer's victim:
1. I keep earplugs on my person at all times. I can still hear, but the yelling and complaining just isn't as mind-numbing.
2. I think that 4 hours of uninterrupted sleep is a good night.
3. I keep the equivalent of a baby diaper bag with me when I go out. Snacks, diapers, wipes, bottles (I enjoy the little cocktail sizes that the airlines serve), etc.
4. People remember us wherever we go.
5. We have places that we can't visit anymore because the people remember us a little too well.
6. We stay at the front of stores because the farther we go the farther it is to come back out when she's having a meltdown.
7. I can tell by how she's breathing whether she's heading for a tantrum.
8. I react politely when told that "You're lucky to still have her."
9. I respectfully accept the same well-meaning advice that I've heard dozens of other times and act like it's the first time I've heard it.
10. I mentally strangle strangers every time someone says, "Oh, isn't she cute!"
1. I keep earplugs on my person at all times. I can still hear, but the yelling and complaining just isn't as mind-numbing.
2. I think that 4 hours of uninterrupted sleep is a good night.
3. I keep the equivalent of a baby diaper bag with me when I go out. Snacks, diapers, wipes, bottles (I enjoy the little cocktail sizes that the airlines serve), etc.
4. People remember us wherever we go.
5. We have places that we can't visit anymore because the people remember us a little too well.
6. We stay at the front of stores because the farther we go the farther it is to come back out when she's having a meltdown.
7. I can tell by how she's breathing whether she's heading for a tantrum.
8. I react politely when told that "You're lucky to still have her."
9. I respectfully accept the same well-meaning advice that I've heard dozens of other times and act like it's the first time I've heard it.
10. I mentally strangle strangers every time someone says, "Oh, isn't she cute!"
Saturday, January 3, 2015
It is time...
It's been quite awhile since I posted. I just don't seem to have much to say. Things are more of the same a few new challenges. In talking to a couple of people, I realized that many thought that Mom was in a facility already. She's not. She's still at home as I try to place her. This time, her Alzheimer's doctor is helping us.
She just started back to day care this last week. In the two months that she was out, no one at the facility told me that she had to have a medical release to return. It makes sense, but it wasn't at the top of my worries at the time, and it would have been nice to have been told. We finally got the release and Mom is going 4 days a week again. I've spoken to a couple of the workers and Mom seems to have calmed down just a bit. One of the aides, who Mom was especially close to, said the Mom seems to be spiraling downward. She doesn't recognize people by sight anymore, including the aide.
I see it in daily activities. She rarely understands basic dialogue anymore. She saw her neurologist and he immediately commented that her language has deteriorated. For the most part, she isn't capable of responding to simple directions. Something as easy as asking her to wash her hands is met with confusion and frustration. She has begun eating with her hands, even something as messy as spaghetti. Her bathroom habits are a constant challenge and that is a major concern. She can't do it all by herself but refuses help.
Overall, there is nothing new that is earth shattering. She's still hungry all of the time and is eating most everything that we put in front of her. But, we are at the point that I can't care for her as she needs anymore. For her sake, and ours, it's time.
She just started back to day care this last week. In the two months that she was out, no one at the facility told me that she had to have a medical release to return. It makes sense, but it wasn't at the top of my worries at the time, and it would have been nice to have been told. We finally got the release and Mom is going 4 days a week again. I've spoken to a couple of the workers and Mom seems to have calmed down just a bit. One of the aides, who Mom was especially close to, said the Mom seems to be spiraling downward. She doesn't recognize people by sight anymore, including the aide.
I see it in daily activities. She rarely understands basic dialogue anymore. She saw her neurologist and he immediately commented that her language has deteriorated. For the most part, she isn't capable of responding to simple directions. Something as easy as asking her to wash her hands is met with confusion and frustration. She has begun eating with her hands, even something as messy as spaghetti. Her bathroom habits are a constant challenge and that is a major concern. She can't do it all by herself but refuses help.
Overall, there is nothing new that is earth shattering. She's still hungry all of the time and is eating most everything that we put in front of her. But, we are at the point that I can't care for her as she needs anymore. For her sake, and ours, it's time.
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