Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

Welcome to Connect, @grandmabus I'm glad your husband was able to attend daycare yesterday. Has he adjusted to the medication?
You can talk to your doctor about hospice to be prepared for the time when it comes.

REPLY
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

He was able to attend daycare on Friday for the first time this past week and seemed to do okay there, however he is not adjusting to the medicine so I did not give it to him before going to daycare, he really is better without the new medicine.

REPLY

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

REPLY
@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

Jump to this post

My mother thought people were stealing from her, but it wasn't true. Instead, my mother was misplacing things. She also lost the ability to differentiate an item, such as her black boots, from black clothing. To keep your mother calm, you may have to to hire someone else to help her.

REPLY
@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

Jump to this post

thank you Harriet for your response. And how did you manage her paranoia? were you able to find out a way to calm her suspiciousness of other people in her house?

REPLY

Distraction worked for a while. Many older people, myself included, don't drink enough water. I would offer my mother a cold drink, cup of coffee, or tea--also a distraction. Saying "I love you" also worked until her dementia became worse. On a frigid winter night, when the temperature was 32 below zero, and the wind chill frightening, my mother called to tell me she was going back home to New York. I called her physician immediately and he ordered her to nursing care, where she died a couple of years later.

REPLY
@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

Jump to this post

Hello @juani Wonderful to meet you here on Connect. I am sorry to learn of the challenges you are experiencing with your mother. I know it is of little comfort, but this is a fairly common occurrence with many individuals suffering from dementia. My mother-in-law suffered from dementia and she had this same problem. As the brain struggles more and more with outside stimuli, the more often it can get muddle and mixed up. Often this includes increasing paranoia regarding those close to the patient as they struggle with issues of memory loss and conflicting memories that come in bits and pieces rather than a smooth flow as they do for most of us.

Sometimes these times of difficulty can change and stop as quickly as they appeared. Unfortunately at times they stay around longer. While I know of no magic suggestion to help, I would suggest you talk with your mom's helper and explain the problem is with the disease and not necessarily with your mother herself. Again, with my mother-in-law for a certain period of time she would confuse the UPS deliveryman with her husband. When we explained he was much better able to deal with it.

On the other hand, given the prior bad acts of the helper, you may want to consider an inexpensive camera in the home so you can watch when you are not there. They are falling in price all the time and may be less expensive right now with the holiday sales going on.

I also certainly understand your feelings of being overwhelmed by this situation and caregiving. I was my wife's primary caregiver while she battled brain cancer for over 14 years and she exhibited many dementia-like symptoms. All I could do was to continue to tell myself my wife needed me more than anyone else in her world at the time and no matter what she needed me to be there to help her, make some of her decisions easier (later to make them for her as her guardian). I, too, often felt like fleeing, but then realized I simply had to stay and help her.

I doubt I have helped much, so feel free if you have more questions! Connect is a great place for caregivers to share and get support!

Strength, Courage, and Peace!

REPLY
@harriethodgson1

Distraction worked for a while. Many older people, myself included, don't drink enough water. I would offer my mother a cold drink, cup of coffee, or tea--also a distraction. Saying "I love you" also worked until her dementia became worse. On a frigid winter night, when the temperature was 32 below zero, and the wind chill frightening, my mother called to tell me she was going back home to New York. I called her physician immediately and he ordered her to nursing care, where she died a couple of years later.

Jump to this post

Dear Harriet, I am sorry about your loss.

REPLY
@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

Jump to this post

Dear @IndianaScott thank you so much for your response. I would try the camera idea. That's something really helpful. Also, you know, after thinking over the fleeing feeling....I believe it was helpful to think that I did had the option. And that staying for her is my decision. It helps with the"no end street" feeling and helps me to be empowered.. It was weird, and I might be in a similar place in a couple of weeks. But....by now I am back.
Thank you so much for sharing without judgement. My challenge is nothing as compared with yours or that of so many which struggle for several years, even decades. And I am fleeing after a couple of months! Not a lot of courage. But it is ok.
Love and compasion.

REPLY

Thank you for your kindness.

REPLY
Please sign in or register to post a reply.