Feeling down..could use a hug, or some encouragement

Status
Not open for further replies.
M

Mary_Gail_36

New member
Hi all. Some of you have followed my post about my mother. It’s on the Back Fence called “Tall Tales and Confabulations”

Well, she’s in a nursing home because of her dementia and it’s coupled with psychosis.

Her house has been sold, and the funds will go to paying the nursing home costs etc.

My house is filled with her things right now. Dishes and glasses. Some clothing that I’ll bring her. Her wedding dress. Pictures. Cards my dad gave her.

We didn’t keep any of her furniture. We donated much of it.

My sister and I were focused on getting her help. Now she’s safe. She couldn’t live home alone. My sister and I live far from where she lived. She’s close to my home now.

But, it’s hit me now that she’s not going to get any better. She barely recognizes me. She is mad at my dad. She’s happy to have seen her sons lately. She has twin sons now. Her Dad visits. Her mom doesn’t ever visit. She is often mad and she can get aggressive. 😦 (none of these things are true. she doesn’t have twins, her parents died decades ago)

I’m feeling sad. I miss her. I used to talk to her every day on the phone. Now when I see her, she doesn’t know me. About a month or so ago, I was able to have lunch with her, quietly in her room. She gave me her cookies. She was hugging and affectionate. Now she’s faded into her psychosis that’s progressed more so than the dementia.

The other day, she was asking me if Joe (my dad) had gone off with Mr. Pooh.
“Have you seen Joe, did he go off with Mr. Pooh.” I asked her who she meant. “Mr. Pooh. Mr Pooh!” I said “Winnie the Pooh?” And she replied, “Not the bear! Mr. Pooh.”

I don’t understand how she can’t remember me, or my kids, or that my dad has died, but she can remember that Winnie the Pooh is a bear.

Thanks for reading,
 
I’m so sorry you are going through this. Dementia, to me, is like a prolonged death. In some ways, our loved one has left us the moment they stop being themselves. What is left behind is a shell.

We are going through something similar with an elderly great uncle who was recently placed in a nursing home after living with my mother for years with a home health aide. Dementia only gets worse, though there might be some good days sprinkled in between.

Correcting your mom will just make her upset, so just be there with her.

I’m reminded of a colleague whose mother became severely demented and did not remember any of her 7 children or her husband of over 60 years. What she did remember was Gio, the boyfriend she had in Italy when she was 16. So, her daughter would come visit with “Letters from Gio” and read these fictional love letters to her mother. It made her happy. It made them both happy, I think.
 
I went to a class for the caretakers of patients with dementia, and it was very helpful. If a local hospital or memory care unit offers one, I’d highly recommend taking one. Also, Mary Pipher, the author of Reviving Ophelia, wrote a book titled, Another Country: Navigating the Emotional Terrain of Our Elders.

The most helpful advice I got was this: go past the nonsensical thing your elder is saying and look for what her concerns are. For instance, one time my mom was concerned because she was supposed to pick up her mom (who had been dead since before I was born). I said, “Oh, I wouldn’t worry. Your older sister will have taken care of that.” Her sister was already dead, too, but her sister was very responsible and it calmed the concern. I was talking to another relative with dementia who was on the phone trying to call her dead husband. Well, what you don’t tell her is that he’s dead, of course. It would be shattering news to her. So I just said, “Oh, he’s not near a phone right now.” “How do you know that?” she asked. “Well, when he left he certainly didn’t expect he’d have cell phone service there, I know that. We’ll just talk for now while you wait, don’t worry about it.” She was OK with that.

Distraction is your friend. For instance, if your mom asks about your dad, you can say, “Joe? I’m not sure what he’s up to. I’m here to see you. Someone else can worry about what Joe is up to. We can have a nice talk without him here right now, don’t you think?”

That is the key–what are we going to do and talk about right now. Unpleasant things can often be dished off to a “better” time off in the future. Forgetfulness is a fact of life, now; you may as well use it to your advantage.

It also helped me to consider that I was talking to Mom in the middle of having a dream. Not a daydream, but a real thoughts-in-the-blender dream. It was really her, just not in her right mind, but I was having a conversation with and making the day better for my real mom, not a stranger.

This “dream” state, this “thoughts-in-the-blender” state of dementia is not the realm where going along with whatever she says and just directing things to a place where she’s more content is a deception. I tried to stick with things that were true, strictly speaking, but in reality you can’t deceive someone who isn’t coherent by just going along in a conversation. A quick application of the “do unto others principle” demonstrates that. You wouldn’t consider the things someone says to you when they know you’re dreaming and just spewing weirdness to be a lie. Getting you to sign real estate papers and pretending you were financially capable when you did it–that would be a lie and a deception. Refraining from saying “Your mother is dead” or even “This IS your home now” to someone who would be devastated to hear it is not a deception. It is true to say, “Your mother isn’t here right now, is there something I can do for you until you can see her?” or “We can’t get you to your house right now, but they do have a nice dining room here where where we can have dinner in the meantime.”

Treating her as an adult in a dream state will also help with the frustration of having her act like a two-year old. An adult with dementia knows they are not two years old. Things go a lot better when they’re talked to with the respect due to an adult.

It is also OK to express sympathy. “Yes, I know. I like my own cooking better, too. I remember the mashed potatoes your mom used to make, too. Wow, those were great, you’re right. It can’t be helped right now, though. We’ll try to be nice to our hosts and just eat what they have here for us today. I’m sure they’re doing the best they can.”

Another example of identifying what the concern was involved a woman whose mom couldn’t settle down unless she was doing something. Her daughter bought two laundry baskets and loaded one with identical white towels and the other with identical socks. When her mom got agitated, she’d ask her if she wanted to fold a basket of towels. When those were done, her mom would do the socks. The daughter would go stir up the towels. When the socks were done or got to be an irritation, she could bring the towels back, take the socks away, un-mate them, and have something for her mom to “accomplish” all ready to go. (Notice that the socks were all identical, because her mom was not with it enough to find mates for socks without getting frustrated.)

I was also helped by the suggestion to use “soap opera dialogue.” I don’t know if you’ve ever watched a soap opera, but the dialogue is written to help viewers who have missed a few episodes to catch up. There is a lot of background information snuck in the conversations in a “casual” way, without bluntly looking at the screen, looking at the viewer who can’t keep up, and explaining things. This way of talking helps alleviate the anxiety that demented persons can have that they don’t know what the conversation is about or who any of the people are who are being talked about are. It is also helpful to excuse any uncertainty from the demented person: “Oh, you probably don’t recognize me, because my hair is a lot different than it used to be. I never used to have grey hair. That would throw anyone off.” You can backtrack, too, and keep the peace: “You don’t say? Well, if you say so, I’ll have to believe you. I thought that X, but sometimes I’m wrong.” You can also say, “Don’t worry about it. I hate it when I can’t remember a name, too. It will come to you later, just keep going…”
 
continued…

I feel for you. My mom went through this. Even when her dementia was relatively moderate, she didn’t know who I was or thought I was my cousin for several years. Then one day towards the end, when she was in the hospital, I walked in and she said: “Well, EasterJoy! Good to see you! What brings you here?” I don’t know if that was exactly what she said, but the crux of it was she didn’t know where she was or why, but she did put my name with my face one time when I thought it was never going to happen again. It was nice to know my face was loosely connected with my name, rattling around in there her memory somewhere.

When you visit her, you’re putting a bright spot into her day, and she is your mom. You’re doing a good thing for her, and since she did good things for you when you didn’t know who anybody was, it is OK for it to go both ways. She’s just dreaming, just has her thoughts in a blender. It is hard to watch, but all these things end. We have hope in life everlasting, so we can afford to treat this like her personal passion. Join your suffering to the suffering of Christ and especially the suffering of Our Lady during His Passion, she who loved him so much and could do nothing to stop what was being done to him, putting him beyond recognition: “Even as many were amazed at him - so marred was his look beyond that of man, and his appearance beyond that of mortals…” (Is 52:14) Your mom is going beyond the point of recognition, but through Christ we have hope that we shall all see each other again and share great joy that will not end. And truly, what you do for her now, when she can do absolutely nothing for you, you do for Christ.

This is very exhausting work, though. Be sure you give yourself a way to recover from it as you go along. The most important thing for caretakers, after all, is to remember that their care-taking puts them in real need of care, too.

:console::hug3:
 
PhiloMed said:
I’m so sorry you are going through this. Dementia, to me, is like a prolonged death. In some ways, our loved one has left us the moment they stop being themselves. What is left behind is a shell.

We are going through something similar with an elderly great uncle who was recently placed in a nursing home after living with my mother for years with a home health aide. Dementia only gets worse, though there might be some good days sprinkled in between.

Correcting your mom will just make her upset, so just be there with her.

I’m reminded of a colleague whose mother became severely demented and did not remember any of her 7 children or her husband of over 60 years. What she did remember was Gio, the boyfriend she had in Italy when she was 16. So, her daughter would come visit with “Letters from Gio” and read these fictional love letters to her mother. It made her happy. It made them both happy, I think.
Click to expand...
When we put the picture collage together for my mom’s funeral, I took it for my aunt in the memory care unit to look at. She enjoyed looking at the pictures of the two of them as teenagers very much. (When she asked where my mom was, I just said “oh, she couldn’t come, but I thought you’d like to see these.”)

She had a picture book that her daughter gave her; every guy in it was described as “I dated him for awhile.” I’m pretty sure her dating life wasn’t quite that busy, LOL! It was just what she said about any guy in the book who looked very familiar but she couldn’t put a name on him.
 
I have/am facing some similar situations so here’s what I’d wish someone would tell me:

You is kind.

You is smart.

You is important.

And I can even guarantee you are the lighthouse in someone else’s storm sometimes.

So give yourself a hug (yes, actually do it) from me and know that you are not alone, but are loved by a God so amazing we can’t even begin to understand it - and that somehow, it will all be okay. And whatever your feelings - no matter how up / down they go - they are normal, acceptable and perfectly okay to feel - then let them go and rest in the hands of Our Father when you can.

Hugs & Prayers,
CJ
 
CradleJourney said:
I have/am facing some similar situations so here’s what I’d wish someone would tell me:

You is kind.

You is smart.

You is important.

And I can even guarantee you are the lighthouse in someone else’s storm sometimes.

So give yourself a hug (yes, actually do it) from me and know that you are not alone, but are loved by a God so amazing we can’t even begin to understand it - and that somehow, it will all be okay. And whatever your feelings - no matter how up / down they go - they are normal, acceptable and perfectly okay to feel - then let them go and rest in the hands of Our Father when you can.

Hugs & Prayers,
CJ
Click to expand...
There is nothing more Christlike than to be kind to someone you love to pieces who is too out of it to appreciate it and maybe so out of it that they strike out at you while you’re caring for them.

There is also no one like Our Lady who understands having to stand by and watch someone you love go through humiliating suffering that they don’t deserve and you can’t stop.

Yes, OP, actually give yourself a hug for us. There are skills to get through this, there are helps to get through this, but there isn’t an easy way through this. You deserve support and care yourself, and lots of it. All of us who have been anywhere like in your position want to offer you that.
 
I’d hug you, chica, if my arms were long enough .

Remember that the bizarre things you are seeing now are not her, but the illness. And strange things happen to the human mind in extremis.

ICXC NIKA to all concerned.
 
I had same the disturbing experience several years ago. My great-grandmother died after a long period of becoming less and less aware. She had no clue who anybody was and what time in history it was (refering to older people as if they should be children, thinking her parents were still alive, saying her husband, who died in the '80’s, was out to the hardware store, etc.)
 
I am sending up prayers for you, your sister and your mom.

Your mother still exists, and she still loves you very much. You’ll sometimes catch a glimpse of her now and then. You are honoring her and your dad by taking such good care of her. I hope I can do as well if need be one day.

I was told when I was very young that visiting the sick was sometimes the same as visiting the imprisoned. In some ways your mom is both.

I hope you keep a journal during this time.

I wish God’s angels bring you His Peace today. God Bless you!
 
CradleJourney said:
I have/am facing some similar situations so here’s what I’d wish someone would tell me:

You is kind.

You is smart.

You is important.

And I can even guarantee you are the lighthouse in someone else’s storm sometimes.

So give yourself a hug (yes, actually do it) from me and know that you are not alone, but are loved by a God so amazing we can’t even begin to understand it - and that somehow, it will all be okay. And whatever your feelings - no matter how up / down they go - they are normal, acceptable and perfectly okay to feel - then let them go and rest in the hands of Our Father when you can.

Hugs & Prayers,
CJ
Click to expand...
Thank you. I appreciate it.
 
I can relate. When my grandma got dementia, she was always angry about stuff that hadn’t happened. She call me up to scream at me about why I had left her apartment while she was in the bathroom and I had never actually been there. Even in the nursing home she was convinced people were stealing from her and not where they were supposed to be and all that. She never forgot our names though. Or our telephone numbers. She couldn’t remember where she put her cigarettes (that she hadn’t smoked in decades) but she could remember everyone’s phone numbers in the middle of the night.
 
PhiloMed said:
I’m so sorry you are going through this. Dementia, to me, is like a prolonged death. In some ways, our loved one has left us the moment they stop being themselves. What is left behind is a shell.

We are going through something similar with an elderly great uncle who was recently placed in a nursing home after living with my mother for years with a home health aide. Dementia only gets worse, though there might be some good days sprinkled in between.

Correcting your mom will just make her upset, so just be there with her.

I’m reminded of a colleague whose mother became severely demented and did not remember any of her 7 children or her husband of over 60 years. What she did remember was Gio, the boyfriend she had in Italy when she was 16. So, her daughter would come visit with “Letters from Gio” and read these fictional love letters to her mother. It made her happy. It made them both happy, I think.
Click to expand...
Thanks. One of the first things the social worker said was to just go with what she says. So if my mom asks if I saw Joe or if Joe is coming, I can say I haven’t seen him but I’ll let him know.

She has psychosis on top of the forgetful nature of the dementia. Her meds for that were giving her side effects. If she’s not psychotic she’s very sweet and loving. The hallucinations and altered state make her aggressive . It’s a blancing act of managing the psychosis and the dementia. She was at my home for a bit. Some of the psychotic stuff was scary. She got all upset that someone planted a gun in my home, and it was meant for her. It was a gun for a Playmobil set. It was probably less then an inch long. She was all upset that someone put that in my house as some type of message for her.
 
EasterJoy said:
I went to a class for the caretakers of patients with dementia, and it was very helpful. If a local hospital or memory care unit offers one, I’d highly recommend taking one. Also, Mary Pipher, the author of Reviving Ophelia, wrote a book titled, Another Country: Navigating the Emotional Terrain of Our Elders.

The most helpful advice I got was this: go past the nonsensical thing your elder is saying and look for what her concerns are. For instance, one time my mom was concerned because she was supposed to pick up her mom (who had been dead since before I was born). I said, “Oh, I wouldn’t worry. Your older sister will have taken care of that.” Her sister was already dead, too, but her sister was very responsible and it calmed the concern. I was talking to another relative with dementia who was on the phone trying to call her dead husband. Well, what you don’t tell her is that he’s dead, of course. It would be shattering news to her. So I just said, “Oh, he’s not near a phone right now.” “How do you know that?” she asked. “Well, when he left he certainly didn’t expect he’d have cell phone service there, I know that. We’ll just talk for now while you wait, don’t worry about it.” She was OK with that.

Distraction is your friend. For instance, if your mom asks about your dad, you can say, “Joe? I’m not sure what he’s up to. I’m here to see you. Someone else can worry about what Joe is up to. We can have a nice talk without him here right now, don’t you think?”

That is the key–what are we going to do and talk about right now. Unpleasant things can often be dished off to a “better” time off in the future. Forgetfulness is a fact of life, now; you may as well use it to your advantage.

It also helped me to consider that I was talking to Mom in the middle of having a dream. Not a daydream, but a real thoughts-in-the-blender dream. It was really her, just not in her right mind, but I was having a conversation with and making the day better for my real mom, not a stranger.

This “dream” state, this “thoughts-in-the-blender” state of dementia is not the realm where going along with whatever she says and just directing things to a place where she’s more content is a deception. I tried to stick with things that were true, strictly speaking, but in reality you can’t deceive someone who isn’t coherent by just going along in a conversation. A quick application of the “do unto others principle” demonstrates that. You wouldn’t consider the things someone says to you when they know you’re dreaming and just spewing weirdness to be a lie. Getting you to sign real estate papers and pretending you were financially capable when you did it–that would be a lie and a deception. Refraining from saying “Your mother is dead” or even “This IS your home now” to someone who would be devastated to hear it is not a deception. It is true to say, “Your mother isn’t here right now, is there something I can do for you until you can see her?” or “We can’t get you to your house right now, but they do have a nice dining room here where where we can have dinner in the meantime.”

Treating her as an adult in a dream state will also help with the frustration of having her act like a two-year old. An adult with dementia knows they are not two years old. Things go a lot better when they’re talked to with the respect due to an adult.

It is also OK to express sympathy. “Yes, I know. I like my own cooking better, too. I remember the mashed potatoes your mom used to make, too. Wow, those were great, you’re right. It can’t be helped right now, though. We’ll try to be nice to our hosts and just eat what they have here for us today. I’m sure they’re doing the best they can.”

Another example of identifying what the concern was involved a woman whose mom couldn’t settle down unless she was doing something. Her daughter bought two laundry baskets and loaded one with identical white towels and the other with identical socks. When her mom got agitated, she’d ask her if she wanted to fold a basket of towels. When those were done, her mom would do the socks. The daughter would go stir up the towels. When the socks were done or got to be an irritation, she could bring the towels back, take the socks away, un-mate them, and have something for her mom to “accomplish” all ready to go. (Notice that the socks were all identical, because her mom was not with it enough to find mates for socks without getting frustrated.)

I was also helped by the suggestion to use “soap opera dialogue.” I don’t know if you’ve ever watched a soap opera, but the dialogue is written to help viewers who have missed a few episodes to catch up. There is a lot of background information snuck in the conversations in a “casual” way, without bluntly looking at the screen, looking at the viewer who can’t keep up, and explaining things. This way of talking helps alleviate the anxiety that demented persons can have that they don’t know what the conversation is about or who any of the people are who are being talked about are. It is also helpful to excuse any uncertainty from the demented person: “Oh, you probably don’t recognize me, because my hair is a lot different than it used to be. I never used to have grey hair. That would throw anyone off.” You can backtrack, too, and keep the peace: “You don’t say? Well, if you say so, I’ll have to believe you. I thought that X, but sometimes I’m wrong.” You can also say, “Don’t worry about it. I hate it when I can’t remember a name, too. It will come to you later, just keep going…”
Click to expand...
One of the activities she does participate in is clothing folding and sorting. She doesn’t like to participate in anything else. The other morning she was upset and looking for my dad. The other residents were all participating in a game.
 
Allegra said:
I can relate. When my grandma got dementia, she was always angry about stuff that hadn’t happened. She call me up to scream at me about why I had left her apartment while she was in the bathroom and I had never actually been there. Even in the nursing home she was convinced people were stealing from her and not where they were supposed to be and all that. She never forgot our names though. Or our telephone numbers. She couldn’t remember where she put her cigarettes (that she hadn’t smoked in decades) but she could remember everyone’s phone numbers in the middle of the night.
Click to expand...
I’m sort of feeling guilty about an incident from a few years ago. She has a psychotic episode. She called my mother in law upset that the kids were missing. I guess she meant me but mother in law thought my kids were missing. And I was at a doctor’s appointment with one of my kids. By the time my mother in law found me, she thought something had happened. At the time one of her meds had a side effect of hallucinations. We discontinued it, and she was fine following. Her doctor wasn’t concerned.

We did get a couple of middle of the night phone calls to. She’d ask for Joe. My son is Joseph, but in retrospect I think she meant my dad.
 
Status
Not open for further replies.
Back
Top