Thank you, Sibling and Pauline. I've started paying someone to come in for a few hours on Saturday so I can go for a long walk and recharge. It helps tremendously and it's worth the money. Tried to reduce Mom's Seroquel because she was overly sleepy during the days. The first night she was dreaming loudly. Last night she was up all night. Yeah, going back to the full dose. I do not even know HOW I was up and down with her all night long for 5-1/2 years! I can't do that anymore. Pauline, my mom would be the first to say the kids come first. My kids are grown, through grad school, and starting their careers. I would never think to judge anyone else - believe me! I respect you for making sure she's in the right place for her. I'm sure you miss her, hon. As my mom used to say, we do the best we can with what we have at any given time. You can visit and hug her tight every time, and know that in your heart you're doing what is best for everyone. It takes courage to do that. I have 2 part-time ladies that split the day shift while I'm at work. My mom would never be able to be home alone. With you at work, you need your mom to be safe, and you've done what you could to see that she is safe and well cared for. I hope you can find peace and comfort in that.
Dee, sorry about your mom. My mom is having dementia, the fronto-temporal. She is always having character changes and sometimes one cannot take it. I’m working and also got two kids to take care of, and with my job and kids, I’m not getting time to take care of her at all. She gets hurt after doing something crazy while I’m away and that hurts me more. I had no choice that I had to admit her at Prestige Care (Arizona) for proper care. Don’t judge me on this, I do love her and I’ve took this action only to keep her safe and for proper care for her. Dee you’ve made me miss her, so badly, and making me rethink over my decision. I don’t know, I want to take care of her and hug her tight, but the job and kids, I also afraid to hurt her more. Please give me an option.
Dee, be sure to bring in enough help so that you have some time for you. It is important for your own health to know remember that it is her end of life, and should not result in your end of life. You are a good daughter.
Sunnygirl1 so sorry about your cousin. She is so young! Terrible to lose all that she had so quickly. Puts life in perspective, doesn't it? Brought my mom into the kitchen with me while i made one of her favorite dinners and prepped next day's crock pot dinner. Then I made her favorite cookies and read her favorite book to her. I get really goofy/silly when I get tired, then really crabby after about 30 minutes of that. I was taking mom to bathroom to get changed and ready for bed and was being silly. I said I'm getting whippy, Ma. She said, oh not that again! Haha! Still love igniting that spark she has. Sometimes I tease her when she is sundowning. It seems to redirect her to a happier mood.
Dee, thanks for sharing about your mom. What a sweet lady and what a nice story.
We didn't know my cousin had any strokes until the MRI revealed multiple strokes and white matter lesions. She must have been having them for years due to her intentional refusal to treat her hypertension and diabetes. Plus, it's likely the Alzheimers was also progressing. Within a few months she went from running her household, shopping, paying bills to not being able to do any of that. She went downhill very quickly in a matter of 6 months.
I admire what you and Jeannegibbs have done for your mothers. I can't even imagine it. You will certainly get jewels in your crown one day.
Jeanne, glad he landed safely! Yes, keeping them content and safe is all we can do. Helpful to know we're not alone. Last night mom wanted me to lie down in bed with her because she was scared. She said to me "come on, I'm not going to try anything". I couldn't help it, I started laughing and just gave her the biggest hug. She's such a honey.
Sunnygirl1 Mom started with dementia shortly after her stroke (vascular) - she was only able to walk with a platform walker and 1-2 people helping her. Her knees are so arthritic she can only stand for a quick transfer now and sometimes I have to do most of the lifting. She has left side hemi-paresis so she can't use left hand/arm and is weak on left leg, also has visual field block. At first she would see a little boy or girl, sometimes sitting on the ceiling fan or whatever, always the same 2 kids - we called them her guardian angels. About a year in that got worse and now she sees some really bizarre stuff. Her decline is strange. She'd reach a new plateau, then would get really sick and be in the hospital. She had a 2nd smaller stroke, then she was at a new level for a while, until she had another illness/hospitalization. Each time she came home worse with a new "normal". This new decline has happened pretty quickly really, over the course of one year. She's 75 now, almost 76. She had her stroke at 69. My Gram, her mom, had Alzheimer's. I suspect my mom has mixed dementia - primarily the vascular but also possibly AZ. She can't read, write or do anything for herself except can eat pretty well still. I read James Herriotts' books to her (All Creatures, Great and Small, etc.) because she grew up on a farm (one of 14 kids) and it was the best time of her life. She loves the stories. Sometimes though she will mix up what she's been read or hears on tv or someone says and it becomes reality to her and gets so wildly outrageous. Only thing I can do is make her feel like I have whatever she's worried about taken care of and then redirect her. Sometimes, though, she's having none of it and gets really upset, thinks I'm trying to pull something over on her. It's frustrating but fascinating how her mind mixes things up. The only way I can describe it to people is like this - imagine all the little flakes in a snow globe are her memories - when you shake it everything gets mixed up and the flakes never fall back into place. I try to do the things she likes (reading, etc.). Some day I know I will wish she was around to bang on the table and ask me to make her favorite cookies. Has your cousin had a stroke or Parkinson's? Mom had her first BM accident on Christmas Day, and another a couple of days later. Stopped letting her eat all the candy and stuff everyone gave her and it hasn't happened again (knock on wood!). I was really worried that would be the next level and I don't do well with that. We don't get to pick and choose, though. She's incontinent with urine. If it comes to bowel incontinence I don't know how I'll handle that. Sigh.
Dee, Seroquel saved my sanity and allowed me to keep my husband home with me. (He took it -- not me.) The ability to sleep through the night is absolutely crucial. I'm glad the new doctor recognizes that.
The decline through dementia is heartbreaking. No doubt about it. But the ability to provide some comfort and reassurance is extremely meaningful. I wouldn't wish for this caretaking journey, but it was/is rewarding in many ways.
My mom will say she can't remember if she's had lunch while the dirty dishes are still on the table in front of her! We tell her, "It is OK if you don't remember about your meals, Ma. There are lots of helpers here who will remember for you. You never miss a meal and it is almost always something you like. You had to think about meals for many, many years. Now you can just let others take care of that."
Her short-term memory is getting worse, which I didn't think possible. Still, she enjoys her meals, getting her hair done, her magazines and the daily paper and visits from her daughters (even if she doesn't remember the visits within the hour.) She is content.
You can't hope to fix your mother or your cousin, but you can try to help them feel content. It is the best we can do, but it is a lot.
(Dee, once my husband thought he was an airplane. "You're on an airplane?" "No. I AM an airplaine." Sigh. He finally came in for a landing and all was well. And he once asked me, a bit sheepishly, if I was his first or second wife. Mostly his delusions were amusing and harmless. I am sorry that your mother has some scary ones!)
Dee, my cousin has Vascular Dementia mixed with Alzheimers. When did your mom become significantly affected? When did she lose her ability to walk? I'm just curious.
Dee, this is just heartbreaking. I'm so sorry she's progressing this way. It's difficult to understand and accept. I see it with my cousin. She's not not my mother, but still, I'm all she has now. It's heartbreaking to see her this way. I would never have expected it. She's only 63 years old!
My cousin was always a tv fan, but now, she can't give it 5 seconds of attention. She can't recall what she had for lunch as she wheels out of the dining room. We are fortunate that she is not disruptive and seems content and cheerful most of the time. But still, I can see the decline in her abilities. Her decline has been fast. I expect her to not know who I am soon. She doesn't have the patience to do much or watch anything except for music. She likes that a lot.
Jeannegibbs I have discussed with new doctor and he prescribed the Seroquel. It helps a lot at night, now. I'm afraid her dementia is progressing as I've noticed other things as well - can't see her water bottle right next to her hand, has to be reminded to finish eating, etc. The decline is scary sometimes. Sometimes she thinks she is in the army overseas (never been on a plane or near an army base), a professional ballplayer, or won the lottery. A couple of times she thought she was a man, or often thinks I'm her elder sister (she's one of 14). Guess this is just another thing to grin and bear. Sigh.
Sunnygirl1 - Mom's on an anti-depressant and Seroquel at bedtime. It helps her fall asleep and stay asleep (most) nights for 6 hours. She just started the Seroquel a month ago. Before that, it was up and down all night long, every 2 hours and oftentimes more. I don't even know HOW I managed that almost every night for over 5 1/2 years, then getting up for work the next morning. The past 3-4 months I've become less patient and that saddens me. So glad her new doc started her on Seroquel. 6-8 straight hours of sleep most nights is sooooo welcome to me. She had a stroke 6 years ago so she can't wander or get into stuff. I try to remember just how vulnerable she must feel, and that's what's spurring the behavior. TV becomes reality to her, so maybe I'll just turn on some calm music and have her sit with me while I make her homemade bread or her favorite cookies. She's always been my best friend - I miss that.
Dee, I take it that your mom is in her 70s. Mine is in her 90s. She, too, raised 7 of us. When she spent weekends with me she was mobile with a walker. Now she is in a wheelchair and is a two-person transfer. She is living in a nursing home and gets family visits nearly everyday. She went through a period of screaming for help frequently (can't remember to use her button) and then not needing anything except to know she is not alone. I am glad to report she has gotten through that phase, is confident she is being cared for and is not alone, and is content.
I hope that your dear mother, too, can somehow gain more confidence about her safety and can relax a bit.
Have you discussed her symptoms in detail with her doctor?
jeannegibbs my Ma does that, too! Where have you been? Uh, in the bathroom, Ma. Well, I was calling and calling for you. Ok, Ma I'm here, what do you want? Oh, I'm sorry, I didn't think anyone heard me. I've been calling for 20 minutes! (She hadn't been).
Love that your Ma had a sense of humor about it. I just wondered if anyone else had experienced this. She uses anything she can get her hands on to bang on the table. Gets louder and louder until I go in there. It's really annoying but I try to remember that she is scared and that's where it's coming from. Must be horrible for her, poor Ma. She raised 7 kids by herself and was the strongest, bravest woman I've ever known. This is sad that this is how she ended up. Sometimes I look at her and this surge of compassion and love makes me tear up. I love her so much it hurts. I always say this is harder on her than it is on me. And I truly believe that.
It is really sad, Dee. And it is so good you are there for her.
Would it be less annoying for you if she had a bell or some other noisemaker to use to summon you? Or is the constantly being summoned that is so hard? (Both, probably.)
My mother always wanted me within sight when she spent weekends with me. She'd holler and holler and when I appeared she'd say in a scolding tone, "Well where have you been?" It didn't help that she'd lost her sense of time, and didn't really know how long I'd been "gone." I told her repeatedly, "Ma, I will ALWAYS be in the house when you are here. If I have to go to the store I will tell you, I will write it down, and I will tell you who else is in the house. I'll never leave you alone." Of course she'd forget this, but it helped for a while.
One day we made a joke out of it. Every time I walked past her I told her exactly where I was going. "I'm on my way to the kitchen, Ma, to peel onions for dinner." "I'm going downstairs to bring up a load of laundry." "I'm going into the bathroom to pee now, Ma." Pretty soon we laughed at every announcement.
I don't know of any way to "cure" this behavior, Dee. Do what you can to make it less annoying for you. Be there for this poor dear woman whose world has become a scary place for her.
Well, you're doing all you can really. What if you make a recording talking to her calmly? Will soothing music help?
I would likely see if her doctor could prescribe something for her. I'm no expert, but maybe your doctor could recommend something. Cymbalta worked for my cousin. It's for depression and pain. It changed her mood and she appears quite calm and cheerful most of the time. Of course, it varies by person.
It sounds like her dementia is quite advanced. I don't know how you care for her in your home, even with part-time help. I can't imagine the stress. The behavior you describe makes me very anxious and I consider myself a patient person. I hope you find something to help though. Let us know how it turns out.
Thank you, Sunnygirl1. She can't see well at all. She just wants to know there is someone there. If she wakes at night she just keeps banging until I go in there. Scares me half to death sometimes. At times I'll be sitting in the living room with her and she can't see me, so she'll yell and give me quite a start. I'd like to rearrange the living room so she can see the whole room from her sofa, where she spends her entire day. Sometimes she doesn't know me and gets scared when I tell her it's me - like she knows something's wrong with her. Really sad. I'm there for her, though.
Sometimes odd behavior is difficult to figure out in dementia patients. It seems clear she wants you near her. Still, that can be draining if you're home from work and need to get things done and can't be in her field of vision.
What if you put a large photo of you and her together in front of her to look at? Or what if you made a video of you walking around the house, the yard, talking to her. You could sit it up on a portable player and let her watch it. It couldn't hurt. See if she will look at it and your photo so you can get out of her sight for awhile each evening.
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Pauline, my mom would be the first to say the kids come first. My kids are grown, through grad school, and starting their careers. I would never think to judge anyone else - believe me! I respect you for making sure she's in the right place for her. I'm sure you miss her, hon. As my mom used to say, we do the best we can with what we have at any given time. You can visit and hug her tight every time, and know that in your heart you're doing what is best for everyone. It takes courage to do that. I have 2 part-time ladies that split the day shift while I'm at work. My mom would never be able to be home alone. With you at work, you need your mom to be safe, and you've done what you could to see that she is safe and well cared for. I hope you can find peace and comfort in that.
Dee you’ve made me miss her, so badly, and making me rethink over my decision. I don’t know, I want to take care of her and hug her tight, but the job and kids, I also afraid to hurt her more. Please give me an option.
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We didn't know my cousin had any strokes until the MRI revealed multiple strokes and white matter lesions. She must have been having them for years due to her intentional refusal to treat her hypertension and diabetes. Plus, it's likely the Alzheimers was also progressing. Within a few months she went from running her household, shopping, paying bills to not being able to do any of that. She went downhill very quickly in a matter of 6 months.
I admire what you and Jeannegibbs have done for your mothers. I can't even imagine it. You will certainly get jewels in your crown one day.
My Gram, her mom, had Alzheimer's. I suspect my mom has mixed dementia - primarily the vascular but also possibly AZ. She can't read, write or do anything for herself except can eat pretty well still. I read James Herriotts' books to her (All Creatures, Great and Small, etc.) because she grew up on a farm (one of 14 kids) and it was the best time of her life. She loves the stories. Sometimes though she will mix up what she's been read or hears on tv or someone says and it becomes reality to her and gets so wildly outrageous. Only thing I can do is make her feel like I have whatever she's worried about taken care of and then redirect her. Sometimes, though, she's having none of it and gets really upset, thinks I'm trying to pull something over on her.
It's frustrating but fascinating how her mind mixes things up. The only way I can describe it to people is like this - imagine all the little flakes in a snow globe are her memories - when you shake it everything gets mixed up and the flakes never fall back into place. I try to do the things she likes (reading, etc.). Some day I know I will wish she was around to bang on the table and ask me to make her favorite cookies.
Has your cousin had a stroke or Parkinson's? Mom had her first BM accident on Christmas Day, and another a couple of days later. Stopped letting her eat all the candy and stuff everyone gave her and it hasn't happened again (knock on wood!). I was really worried that would be the next level and I don't do well with that. We don't get to pick and choose, though. She's incontinent with urine. If it comes to bowel incontinence I don't know how I'll handle that. Sigh.
The decline through dementia is heartbreaking. No doubt about it. But the ability to provide some comfort and reassurance is extremely meaningful. I wouldn't wish for this caretaking journey, but it was/is rewarding in many ways.
My mom will say she can't remember if she's had lunch while the dirty dishes are still on the table in front of her! We tell her, "It is OK if you don't remember about your meals, Ma. There are lots of helpers here who will remember for you. You never miss a meal and it is almost always something you like. You had to think about meals for many, many years. Now you can just let others take care of that."
Her short-term memory is getting worse, which I didn't think possible. Still, she enjoys her meals, getting her hair done, her magazines and the daily paper and visits from her daughters (even if she doesn't remember the visits within the hour.) She is content.
You can't hope to fix your mother or your cousin, but you can try to help them feel content. It is the best we can do, but it is a lot.
(Dee, once my husband thought he was an airplane. "You're on an airplane?" "No. I AM an airplaine." Sigh. He finally came in for a landing and all was well. And he once asked me, a bit sheepishly, if I was his first or second wife. Mostly his delusions were amusing and harmless. I am sorry that your mother has some scary ones!)
My cousin was always a tv fan, but now, she can't give it 5 seconds of attention. She can't recall what she had for lunch as she wheels out of the dining room. We are fortunate that she is not disruptive and seems content and cheerful most of the time. But still, I can see the decline in her abilities. Her decline has been fast. I expect her to not know who I am soon. She doesn't have the patience to do much or watch anything except for music. She likes that a lot.
I hope that your dear mother, too, can somehow gain more confidence about her safety and can relax a bit.
Have you discussed her symptoms in detail with her doctor?
Love that your Ma had a sense of humor about it. I just wondered if anyone else had experienced this. She uses anything she can get her hands on to bang on the table. Gets louder and louder until I go in there. It's really annoying but I try to remember that she is scared and that's where it's coming from. Must be horrible for her, poor Ma. She raised 7 kids by herself and was the strongest, bravest woman I've ever known. This is sad that this is how she ended up. Sometimes I look at her and this surge of compassion and love makes me tear up. I love her so much it hurts. I always say this is harder on her than it is on me. And I truly believe that.
Would it be less annoying for you if she had a bell or some other noisemaker to use to summon you? Or is the constantly being summoned that is so hard? (Both, probably.)
My mother always wanted me within sight when she spent weekends with me. She'd holler and holler and when I appeared she'd say in a scolding tone, "Well where have you been?" It didn't help that she'd lost her sense of time, and didn't really know how long I'd been "gone." I told her repeatedly, "Ma, I will ALWAYS be in the house when you are here. If I have to go to the store I will tell you, I will write it down, and I will tell you who else is in the house. I'll never leave you alone." Of course she'd forget this, but it helped for a while.
One day we made a joke out of it. Every time I walked past her I told her exactly where I was going. "I'm on my way to the kitchen, Ma, to peel onions for dinner." "I'm going downstairs to bring up a load of laundry." "I'm going into the bathroom to pee now, Ma." Pretty soon we laughed at every announcement.
I don't know of any way to "cure" this behavior, Dee. Do what you can to make it less annoying for you. Be there for this poor dear woman whose world has become a scary place for her.
I would likely see if her doctor could prescribe something for her. I'm no expert, but maybe your doctor could recommend something. Cymbalta worked for my cousin. It's for depression and pain. It changed her mood and she appears quite calm and cheerful most of the time. Of course, it varies by person.
It sounds like her dementia is quite advanced. I don't know how you care for her in your home, even with part-time help. I can't imagine the stress. The behavior you describe makes me very anxious and I consider myself a patient person. I hope you find something to help though. Let us know how it turns out.
What if you put a large photo of you and her together in front of her to look at? Or what if you made a video of you walking around the house, the yard, talking to her. You could sit it up on a portable player and let her watch it. It couldn't hurt. See if she will look at it and your photo so you can get out of her sight for awhile each evening.