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TheRealJuliane
Guest
Thank you, James. You are the one who understands the best. She’s still up and I am trying really hard not to break down in tears.
- Status
J
JRKH
Guest
T
TheRealJuliane
Guest
It helps a lot just to post here and know I’m not alone. Her friend has really gone through the tough times, but it hurts to see her like this and know she’s not the person she used to be. She’s the only grandparent on my side that my kids have known - my dad died when my older son was 3 and the younger one was only 1. They don’t remember him. She’s been such a dear woman and although she’s old enough to be my grandmother, she’s been like a mom to me in so many ways. She always said she didn’t want to get Alzheimer’s and end up in a nursing home…
Whatever this is, even if it’s not Alzheimer’s, I’m sure there’s no curing it and that it will continue to progress, as it has over the last 5 or so years.
J
JRKH
Guest
Yes - it’s good to have others that one can talk with. :hug3:
I’m with your mom…I would not want to wind up in a nursing home either (even though I know I probably will someday). I also know I would do everything I could to keep my loved one out of a nursing home if at all possible - especially now that I know the great spiritual benefits of being a caregiver to such a loved one. I’m sure that you feel this same way.
Unfortunately it is not always possible to do this - even when we love someone with all our heart. It’s a question of making the very best and most loving decision we can for everyone involved.
Anyway - I hope that you and she had a restful night and can enjoy a nice memorial day together.
Peace
James
I’m with your mom…I would not want to wind up in a nursing home either (even though I know I probably will someday). I also know I would do everything I could to keep my loved one out of a nursing home if at all possible - especially now that I know the great spiritual benefits of being a caregiver to such a loved one. I’m sure that you feel this same way.
Unfortunately it is not always possible to do this - even when we love someone with all our heart. It’s a question of making the very best and most loving decision we can for everyone involved.
Anyway - I hope that you and she had a restful night and can enjoy a nice memorial day together.
Peace
James
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TheRealJuliane
Guest
Since I worked for a short time with very disabled children, I do know the spiritual benefits of working with people who cannot communicate or interact normally. I could detach from their history since I didn’t know them other than working with them. It’s harder to be detached since I have known Mom for over 20 years. I am grieving for the person she used to be, and trying to understand the person she is now.
J
JRKH
Guest
Yes - it is very different. I don’t have the experience that you had but I watched my mom and dad together while dad had ALZ and even that connection was more “detached” than what I am dealing with now with my spouse (and love of my life).
I once asked the question here if a person can grieve over something that hasn’t happened yet.
Not a lot of replies but some good ones that might help you…I would especially call your attention to the last post (mine). You might find my comments on the Sorrowful mysteries to be interesting and maybe helpful…
Anyway - Yes it is a struggle to come to grips with the loss of someone - especially when they are still there, alive, in front of you.
I can still remember the first time my wife looked at me and said - “Who are you?”:bighanky: I knew it had to happen sooner or later, but nothing quite prepares you for that moment…
Your mom is very blessed to have such people as yourself and her longtime friend to look out for her.
Peace
James
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TheRealJuliane
Guest
Wow, James. Thanks for sharing that with me. Your last post about the Sorrowful Mysteries needs to be shared with a wider audience. I think you could probably write a book about what you’ve gone through with your dear lady. That is a very profound understanding of the sorrowing/grieving process.
I did have a bit of a cry after she finally went to bed last night. It helped a little but I could easily break down again, just thinking about it. She is sitting in the living room listening to the voices from the heating vents…
J
JRKH
Guest
Well - I don’t know about a book…a pamphlet maybe…
Having a good cry is a great help but just remember that so is laughter if it can be managed.I did have a bit of a cry after she finally went to bed last night. It helped a little but I could easily break down again, just thinking about it. She is sitting in the living room listening to the voices from the heating vents…
One of the things that helped us tremendously was keeping a sense of humor about the whole thing. Of course this got harder as time went on - and you are sort of jumping in the middle - but even now my great joy is to see her smile and hear her laugh.
On the crying front…I remember the time when, after months of stressful behavior, we had to put her in the hospital because she was totally out of control. I came home, curled up in my recliner (not easy as I am 6 feet tall), and just bawled…I said one prayer…“Dear God, I can’t hold on anymore. Just don’t you let go of me”.
The greatest peace came over me and I felt that I was curled up on His lap with His arms around me.
All I can say is that when we are completely exhausted and empty - when we least expect it - that is when we are most open to Him.
Hope you have a great day with your mom.
Peace
James
P.S. I know she is your step-mom but somehow for you two that just doesn’t sound right. I hope you don’t mind my referring to her as your mom.
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TheRealJuliane
Guest
It was a fair day today. My cousin and his wife came over and spent a good part of the day here, and ate lunch with us. She did talk a little bit about her delusions but my cousin over-talked her most of the time, so 
she didn’t go into a lot of detail. Both my cousin and his wife went through this with their own mothers. It was great to see them - it’s been 2 years since I saw them. Mom didn’t get a nap today so I gave her her pill early and she’s in bed now. I had to tell her over and over that I would make sure the doors are locked…
My sister is coming tomorrow. So another day of distraction and keeping her busy. I also will call the doctor and tell him how this pill is working. I have a lot of questions for him, I hope he has time to talk to me. I’d like to meet him in person but after a long holiday weekend, he may not have any open appointments.
We looked at some photographs tonight, and while she didn’t get any laughter out of them, she did have to think about old times and remember names, etc. so I think that helps overcome the voices in her head. I ask her all sorts of questions about the people in the photos, who is this one, who is that one, what happened to him, etc. and she can sometimes tell me something about them. She used to know every one of them with certainty.
I’m afraid I spoke harshly to her earlier… When she wanted to keep the dog inside, and kept going on and on…I told her that she’s safe here and no one wants to hurt her, no one has ill intentions and that she should try to think happy thoughts instead of these bad thoughts all the time. Of course it did not one bit of good…Just made me feel rotten about it. So I hug her hard at bedtime and tuck her in and tell her I love her very much. I hope she remembers that instead of me raising my voice at her. She’s quite childlike in many ways, except children grow in reasoning and she’s going the other direction.
I only have 3 more days here, I leave on Friday. I will be doing some planning with her friend between now and then.
p.s. I call her Mom and have for years. Sometimes I tell people she’s my step-mother, who married my dad when I was already grown and out of the house, because I still love my mother who died when I was 10. I don’t want her to be put aside, as it were. But this wonderful, sweet, happy woman made my Dad so happy in his retirement years. And she is grandma to my kids. So, Mom it is. I love her as much as I would my own mother.
she didn’t go into a lot of detail. Both my cousin and his wife went through this with their own mothers. It was great to see them - it’s been 2 years since I saw them. Mom didn’t get a nap today so I gave her her pill early and she’s in bed now. I had to tell her over and over that I would make sure the doors are locked…My sister is coming tomorrow. So another day of distraction and keeping her busy. I also will call the doctor and tell him how this pill is working. I have a lot of questions for him, I hope he has time to talk to me. I’d like to meet him in person but after a long holiday weekend, he may not have any open appointments.
We looked at some photographs tonight, and while she didn’t get any laughter out of them, she did have to think about old times and remember names, etc. so I think that helps overcome the voices in her head. I ask her all sorts of questions about the people in the photos, who is this one, who is that one, what happened to him, etc. and she can sometimes tell me something about them. She used to know every one of them with certainty.
I’m afraid I spoke harshly to her earlier…
When she wanted to keep the dog inside, and kept going on and on…I told her that she’s safe here and no one wants to hurt her, no one has ill intentions and that she should try to think happy thoughts instead of these bad thoughts all the time. Of course it did not one bit of good…Just made me feel rotten about it. So I hug her hard at bedtime and tuck her in and tell her I love her very much. I hope she remembers that instead of me raising my voice at her. She’s quite childlike in many ways, except children grow in reasoning and she’s going the other direction. I only have 3 more days here, I leave on Friday. I will be doing some planning with her friend between now and then.
p.s. I call her Mom and have for years. Sometimes I tell people she’s my step-mother, who married my dad when I was already grown and out of the house, because I still love my mother who died when I was 10. I don’t want her to be put aside, as it were. But this wonderful, sweet, happy woman made my Dad so happy in his retirement years. And she is grandma to my kids. So, Mom it is. I love her as much as I would my own mother.
J
JRKH
Guest
Juliane,
Sounds like a very nice day.
Don’t worry about the “speaking harshly”. It happens. Odds are that she won’t remember at all. She is in her own little world and each day is a whole new start.
Heck - sometimes it’s like each moment is a whole new start…
What is more important to them is the overall sense they get fro us. The soft voice, the joke, the hug, the hand holding, the special treat you make “just for them” (even if it’s something quite common) and - as you know - the tucking in, the kisses etc. In short the love we have for them - and they for us - will be what sticks with them.
Glad to see that there are other family members in the area. Do these other family members live near your mom? It would be good if they can become involved more fully in her care. That way no one person is overwhelmed and your mom is kept safe while the family works on making more permanent arrangements.
Though be warned that these kinds of situations can bring out all sorts of conflicts among family members. I have heard some “horror stories”. Hopefully this such will not be the case for you.
Hope you can have a good conversation with the doc today, though I’m afraid you might be right about him being busy this week.
May God bless and Keep you and your mom as you “fill up on” hugs over the next couple of days.
Peace
James
Sounds like a very nice day.
Don’t worry about the “speaking harshly”. It happens. Odds are that she won’t remember at all. She is in her own little world and each day is a whole new start.
Heck - sometimes it’s like each moment is a whole new start…
What is more important to them is the overall sense they get fro us. The soft voice, the joke, the hug, the hand holding, the special treat you make “just for them” (even if it’s something quite common) and - as you know - the tucking in, the kisses etc. In short the love we have for them - and they for us - will be what sticks with them.
Glad to see that there are other family members in the area. Do these other family members live near your mom? It would be good if they can become involved more fully in her care. That way no one person is overwhelmed and your mom is kept safe while the family works on making more permanent arrangements.
Though be warned that these kinds of situations can bring out all sorts of conflicts among family members. I have heard some “horror stories”. Hopefully this such will not be the case for you.
Hope you can have a good conversation with the doc today, though I’m afraid you might be right about him being busy this week.
May God bless and Keep you and your mom as you “fill up on” hugs over the next couple of days.
Peace
James
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TheRealJuliane
Guest
No, unfortunately, the cousins who were here yesterday live 2 hours away and my sister lives about 2.5 hours away. My sister is not in good health herself, or she would volunteer to take care of Mom. Mom’s friend is 73, my sister is 59 but Mom’s friend is in better health overall than my sister. Mom still has a brother living but he’s 40 minutes away, blind and disabled himself. So he’s no help. She’s outlived most of her friends, or they are in nursing homes now. The neighbors don’t even interact with her.
Mom’s friend has arranged for some respite care by another friend who helped when my dad got ill and passed away, so that gives Mom a little variety and her friend gets at least a little break. As you know, it’s risky hiring a stranger to care for someone who does not really have a grasp on reality, so I’m glad this lady was able to agree to sit with Mom.
I’ll see if I can help in any other way, such as doing Mom’s bills on line, or making phone calls to doctors, etc. If something happened to Mom’s friend, it would be on me and no one else, I’m afraid, to figure out what to do. I’d bring her down to TX but she’s lived here all of her life, in his one county, and I can’t imagine she’d be happy anywhere else. But then again, as you say, she may get to a point where she doesn’t know where she is anyway, so…
One day at a time.
Mom still has a brother living but he’s 40 minutes away, blind and disabled himself. So he’s no help. She’s outlived most of her friends, or they are in nursing homes now. The neighbors don’t even interact with her.Mom’s friend has arranged for some respite care by another friend who helped when my dad got ill and passed away, so that gives Mom a little variety and her friend gets at least a little break. As you know, it’s risky hiring a stranger to care for someone who does not really have a grasp on reality, so I’m glad this lady was able to agree to sit with Mom.
I’ll see if I can help in any other way, such as doing Mom’s bills on line, or making phone calls to doctors, etc. If something happened to Mom’s friend, it would be on me and no one else, I’m afraid, to figure out what to do. I’d bring her down to TX but she’s lived here all of her life, in his one county, and I can’t imagine she’d be happy anywhere else. But then again, as you say, she may get to a point where she doesn’t know where she is anyway, so…
One day at a time.
J
JRKH
Guest
Juliane…
Yes it sounds like a lot is falling on her friend - and now on you. Glad to hear that a third person is getting involved to give your mom’s friend a break.
By the sounds of things it won’t be long and your mom will have be moved somewhere - or someone will have to move in with her permanently…
Keeping you in my thoughts and prayers…
While out this morning (My respite time) I stopped at our local Catholic book store. They had a book there that I thought would be of help to you. It’s called:
“When Someone You Love No Longer Remembers” by Cecil Murphy.
It’s a very small book with brief stories touching on a lot of what goes on with dementia patients and caregivers.
If you’s like to order it, you can get it directly from Amazon…or you could go through HERE and support the local bookstore.
Of course if you have a Catholic bookstore near where you live you can go ahead and give them the business…
Anyway - I thought I’d mention it.
Peace
James
Yes it sounds like a lot is falling on her friend - and now on you. Glad to hear that a third person is getting involved to give your mom’s friend a break.
By the sounds of things it won’t be long and your mom will have be moved somewhere - or someone will have to move in with her permanently…
Keeping you in my thoughts and prayers…
While out this morning (My respite time) I stopped at our local Catholic book store. They had a book there that I thought would be of help to you. It’s called:
“When Someone You Love No Longer Remembers” by Cecil Murphy.
It’s a very small book with brief stories touching on a lot of what goes on with dementia patients and caregivers.
If you’s like to order it, you can get it directly from Amazon…or you could go through HERE and support the local bookstore.
Of course if you have a Catholic bookstore near where you live you can go ahead and give them the business…
Anyway - I thought I’d mention it.
Peace
James
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TheRealJuliane
Guest
Sounds perfect, James, thanks.
It was an up-and-down day today. I got a few hours tonight where it was like old times, she was like herself again. What a blessing that was! Earlier, she was pretty squirrely.
She’s talking about getting a gun now.
NO WAY MA’AM! I told her that she can’t get a gun at her age. She’s never shot a real gun in her life, believe it or not, not even a .22! Well, that was today, next week maybe she’ll want a motorcycle! LOL
It was an up-and-down day today. I got a few hours tonight where it was like old times, she was like herself again. What a blessing that was! Earlier, she was pretty squirrely.
She’s talking about getting a gun now.
NO WAY MA’AM! I told her that she can’t get a gun at her age. She’s never shot a real gun in her life, believe it or not, not even a .22! Well, that was today, next week maybe she’ll want a motorcycle! LOL
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TheRealJuliane
Guest
Another day of ups and downs. She woke up OK but quickly started listening to the voices in the baseboards. She was quiet but preoccupied with the voices. I took her out at lunch to McDonald’s and we happened to run into someone she knew years ago when they both worked in a local factory. The woman knew Mom but Mom didn’t remember her. Anyway that was about 45 minutes out of the house.
Later in the afternoon, things seemed to change with the voices telling her that the men who were going to burn her house had all been caught and were in custody. She was happy and even relaxed and I was hoping that would be the end of this saga…We went out for dinner and had a nice time, and she ate very well. Just 3 years ago, she looked really bad and wouldn’t eat more than a few mouthfuls at any meal. So now her appetite is great but her mind is going!
Anyway, then, shortly after we returned back home things went awry again. Now there were either other men who had bad intentions, or the originals had been let out (I lost track of all the stories) and she got agitated and anxious. I got her pill and gave it to her but it still took almost an hour to really work.
We will go and see her new doctor tomorrow and I hope he will have some answers for us.
Anyway that was about 45 minutes out of the house.Later in the afternoon, things seemed to change with the voices telling her that the men who were going to burn her house had all been caught and were in custody. She was happy and even relaxed and I was hoping that would be the end of this saga…We went out for dinner and had a nice time, and she ate very well. Just 3 years ago, she looked really bad and wouldn’t eat more than a few mouthfuls at any meal. So now her appetite is great but her mind is going!
Anyway, then, shortly after we returned back home things went awry again. Now there were either other men who had bad intentions, or the originals had been let out (I lost track of all the stories) and she got agitated and anxious. I got her pill and gave it to her but it still took almost an hour to really work.
We will go and see her new doctor tomorrow and I hope he will have some answers for us.
J
JRKH
Guest
There is a thing with dementia patients called “sundowning”. As the name suggests it is a worsening of symptoms in the late afternoon / early evening. I’ve never really heard any “official” explanation for why this occurs - but most likely it has to do with getting tired, their minds becoming overloaded and being unable to process all of the (name removed by moderator)ut.
Didn’t mean to hit you with another term……Just wanted you to know that late afternoon agitation is not an uncommon issue.
Glad to hear you are going in to see the Doc today. I suspect that the Doc visit will be a double edged sword with some good answers, but not really enough…It’s like that when what we want is to make things better and the doctors just can’t do that.
Sorry - I don’t mean to be a downer. But I’ve been to these kinds of visits and they are usually helpful…but not enough…if you know what I mean.
At this point I’m a bit worried about you. Given the state that she is in mentally, it’s going to be awfully hard on you to leave and to be so far away…
Thinking of you daily…
Peace
James
Didn’t mean to hit you with another term…
…Just wanted you to know that late afternoon agitation is not an uncommon issue.Glad to hear you are going in to see the Doc today. I suspect that the Doc visit will be a double edged sword with some good answers, but not really enough…It’s like that when what we want is to make things better and the doctors just can’t do that.
Sorry - I don’t mean to be a downer. But I’ve been to these kinds of visits and they are usually helpful…but not enough…if you know what I mean.
At this point I’m a bit worried about you. Given the state that she is in mentally, it’s going to be awfully hard on you to leave and to be so far away…
Thinking of you daily…
Peace
James
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TheRealJuliane
Guest
I do know about “sundowning,” but I thought it was only part of Alzheimer’s and no one has said that is what she definitively has. She even will say she has a disease, and call it “Sundowner Syndrome.” One of her imaginary people told her she has that. I guess they can be helpful at times.
I’ll be OK. I have a lot of good memories of her in happier times that will sustain me. And as you know, at times you can still see a glimmer of the person your loved one used to be. She’s still mobile, she has a good appetite, and I can still sometimes make her laugh. I do wish I could be here all the time - her friend and I could alternate days and nights and then maybe neither of us would burn out. But her friend is very pragmatic, and has cared for many people like Mom over the years, so she understands what is happening and what will happen. For me, it’s all new. My people have all died of cancer before they got to her age. My dad was 83 when he died and he had no dementia at all. My cousin said that when you get as old as Mom, one year is like 10.
Well, for some reason she is up already so I will talk to you later.
One of her imaginary people told her she has that. I guess they can be helpful at times.I’ll be OK. I have a lot of good memories of her in happier times that will sustain me. And as you know, at times you can still see a glimmer of the person your loved one used to be. She’s still mobile, she has a good appetite, and I can still sometimes make her laugh. I do wish I could be here all the time - her friend and I could alternate days and nights and then maybe neither of us would burn out. But her friend is very pragmatic, and has cared for many people like Mom over the years, so she understands what is happening and what will happen. For me, it’s all new. My people have all died of cancer before they got to her age. My dad was 83 when he died and he had no dementia at all. My cousin said that when you get as old as Mom, one year is like 10.
Well, for some reason she is up already
so I will talk to you later.
T
TheRealJuliane
Guest
As a “fun” conclusion to my visit, early Friday morning the town tornado sirens went off at 12:30 a.m. I had only been asleep for maybe an hour. Mom was sound asleep having taken her night time pill at 9 p.m. She slept through the whole storm. I called her friend who is used to these things, and she told me not to panic but to get in the bathtub. Now, the thing is, Mom’s house is just half a step up from a mobile home; it’s not well-constructed and there is no “interior room,” since all of the rooms are either on one side of the house or the other. I did wonder if I should wake Mom up, but then when I talked to her friend, she said it would not only likely be impossible, but then she would be alarmed, probably for nothing at all. So I sat in the bathtub and prayed the rosary. The storm passed with just high winds, rain, and lots of lightning. I finally got back to bed, and said another entire rosary before falling back to sleep. Mom never heard any of it.
When I left later in the morning, to return home, she cried a little bit. I told her I would come back as soon as possible. So hard to leave…
Her friend said she had a good day once she moved her out to the farm. One weird aspect to her condition is that when she talks on the phone, she can somehow access what’s left of her rational mind and sound completely normal and like her old self.
When I left later in the morning, to return home, she cried a little bit. I told her I would come back as soon as possible. So hard to leave…
Her friend said she had a good day once she moved her out to the farm.
One weird aspect to her condition is that when she talks on the phone, she can somehow access what’s left of her rational mind and sound completely normal and like her old self.
J
JRKH
Guest
BEEN THERE DONE THAT!!! :bigyikes:
When dangerous conditions are in the area about all I can do is to pray to the Lord to protect us, but if it be his will…to take us both. Then I just stay by my lady.
:hug3:When I left later in the morning, to return home, she cried a little bit. I told her I would come back as soon as possible. So hard to leave…
Yes it’s funny how they can seem so normal for short periods…It’s only when you are around the 24 - 7 for a time that the real picture emerges. Glad to hear that she is (hopefully) settling back into a routine.Her friend said she had a good day once she moved her out to the farm.
How went the doctor’s visit?
Peace
James
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TheRealJuliane
Guest
It was good, but you were right, we didn’t get any answers. He did say when I asked him out in the hallway, that the term “Alzheimer’s” is over-used or over-diagnosed, and what she has seems more like a young adult’s schizophrenia, which is true. The main part of the visit was spent trying to figure out what medication to try next. I’m worried that she may have Lewy Body Dementia and if she does, she will react badly to anti-psychotics, and in fact, she has already reacted very badly to Risperidol. But her friend is keep track of her reactions as well as all the meds they’ve tried so far. The doctor phoned in a trial of Mellaril, which neither of us wanted to start as long as things are working on the Xanax.
I tell you, I did panic for a few minutes because I thought that a tornado warning meant that one had been spotted in the area.
All kinds of things ran through my head - do I get her up, and if so, where should we go? The bathtubs she has aren’t big enough for two of us to be in at the same time, and there is no safe place in her house. I had no idea where there was a shelter in town, or if I could make it there in time (doubtful since I’d have had to wake her up, get her to the car, and drive somewhere). She was absolutely fast asleep, slept through all of the siren cycles (about 6) as well as the all-clear. I told her the next morning that she had missed all the excitement! When it was all clear, I was so glad that I hadn’t tried to wake her up. She’d have been frightened and confused for nothing. And she wouldn’t have left her dog in the house in any case.
E
EasterJoy
Guest
A geriatric nurse once told me that Alzheimer’s patients do not get that their logic is out of whack. In the early stages, they can get that they have Alzheimer’s, they can get that something must be behind all the weird stuff happening, but they don’t see the error in their own thinking. My mom had vascular dementia, not Alzheimer’s, but if she had told me a story like your mom’s, my mom would never in a million years have believed that her experience wasn’t real. She was always convinced that the rest of us were nuts, and it made her very angry when we argued with her. If there was physical evidence in our favor, that made her even more angry. As I’ve often said, there was a stretch (when she could still attempt cooking and could still remember that nobody believed her all day) when her life seemed like every day was a Monday, and not in a good way.
I think you’re totally right about this being something else, and so I think that your mom’s symptoms probably won’t have a typical Alzheimer’s progression. I’m not trying to be a Pollyanna, but these may even be delusions that could go away, if whatever is wrong is fixed. That does happen with geriatric psych problems; they aren’t all chronic and progressive.
Wow, give yourself lots of room to rest. There was nothing more exhausting to me than being with my mom when she had started getting unpredictable, and that was even when she had a pretty good day. The combination of being on the look-out for what she might unexpectedly do and the grief of missing what she had been and seeing what she had lost was a huge piece of work. I was always exhausted afterwards. My siblings and I would call each other to “de-brief” after we had been with Mom, just to talk to someone who knew Mom and knew what we had experienced while with her. That was very helpful.
It’s especially hard that she’s so far from specialists, although even with specialists, there is a lot of trial and error to figuring these things out. I hope your mom’s doctors can find something to help her out, so she can stay at home for as long as possible.
- Status