Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and discussion is warranted given the challenges dementia can present to caregivers.

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.

Indiana Scott, I can’t find where to post a question about pain reception in someone with dementia. So I thought I’d just ask you and maybe you know how to post it for other opinions. Or just answer me. My problem is that my sister with mild dementia has terrible pain in her hip or knee or shoulder and sometimes more than one place. I get her prescribed medicine out for her. Twenty minutes later she is walking without a limp and pain free. Her med is still sitting on the counter. She had never taken it and was pain free. Other times she is bent over and with a limp that inhibits walking and says she has no pain at all. I beg her to take the pain med and watch her take it and the pain continues the rest of the day. I can’t tell when she has pain or doesn’t and her description of pain does not make sense. I have her on (with doctor’s knowledge) 660 mg of Aleve twice a day. Do you think she has break through pain but can’t tell me where it is coming from? Or has pain that gets treated but she doesn’t remember she took anything for it and so remembers the pain for the rest of the day I spite of things I do to alleviate it for her? I don’t want her to suffer. What do you think?

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@sallysue

Indiana Scott, I can’t find where to post a question about pain reception in someone with dementia. So I thought I’d just ask you and maybe you know how to post it for other opinions. Or just answer me. My problem is that my sister with mild dementia has terrible pain in her hip or knee or shoulder and sometimes more than one place. I get her prescribed medicine out for her. Twenty minutes later she is walking without a limp and pain free. Her med is still sitting on the counter. She had never taken it and was pain free. Other times she is bent over and with a limp that inhibits walking and says she has no pain at all. I beg her to take the pain med and watch her take it and the pain continues the rest of the day. I can’t tell when she has pain or doesn’t and her description of pain does not make sense. I have her on (with doctor’s knowledge) 660 mg of Aleve twice a day. Do you think she has break through pain but can’t tell me where it is coming from? Or has pain that gets treated but she doesn’t remember she took anything for it and so remembers the pain for the rest of the day I spite of things I do to alleviate it for her? I don’t want her to suffer. What do you think?

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Hi @sallysue I am glad you posted here and you raise a very interesting dementia related issue for sure!

Unfortunately I am not a medical professional so I cannot answer your question. I do know in the later stages of my wife’s neurodegenerative disease she often had a difficult time accurately describing her pain, the level, origin, etc. of it as well.

I will see if someone with a medical background can give us some help on this.

Thanks again!

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@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Thank you so much kdawn32! It’s nice to know someone else has the same problem with their loved one. I am her primary care giver. We have a physical scheduled for later this month. I thought it might be me. It is probably a problem between the pain source and their brains. Thank you for replying. You have encouraged me to keep working with our communication.

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I’m pretty sure that my mom’s dementia started when she was in her 60’s and ended when she was 86. It was also hard for us to find someone to diagnose her (siblings in denial as well) as well as her HATING any doctor that she saw. My journey has somewhat ended except that now my father needs support and guidance. He’s 91. I’m beginning a caregiver program within our church zone (7 churches) as well as getting more involved with our local Alzheimer’s group.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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“nerve racking”, oh yes can I relate to that. How do we not get upset about the continuous questions

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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I thought about it a long time, whether to tell my mom she had dementia. But she kept saying how “stupid” she was and I wanted to let her know it was a disease that she had no control over. I started my telling she had a severe memory problem, she came back with, “well, you forget things too.” I finally mentioned dementia, but she still keeps calling herself “stupid” and get mad when she is corrected about a memory or inability to do a task

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@michiganstressedlady

Ok, I wish everyone well, but I have to go to bed just to save my sanity ….I just gave him a shower and being 520 lbs he decided to get on his knee’s which I told him not to do that , and he wont listen , so he got stuck on his knees in front of shower and couldn’t get up ! He flailed around until I could get him to listen to me , which would have been better if he would have from the beginning but finally using his cane and the counter and the toilet seat I got him to follow direction s and got him up …. What an ordeal , … Then to top it off he told me he better get his things in order now and get life insurance so he can leave his brother something and his nephew , and now that he is getting bad he said he figured it was worth it, Am I not worth it ? Then he said he didn’t want to marry me because he figured out… why should he, and then he said he might want to cause he might want to have help in the future…. what the **** …. I have been with this man for 12 yrs , taken care of him for all of that time , doing lawn work, house work ,laundry ,cooking , and everything sense I love him and taken care of him as he has been in the hospital and bedridden a majority of this time and he has never been able to do anything for the past 5 yrs. and he has said all these nasty , rude and totally mean things to me that have made me feel just awful and angry , and I feel like crying but also like I have done everything for nothing , no love back ;( …. is it the disease or him ? idk ,,,, I honestly don’t know what to do , do I let him stay because I still love him and take care of him because its the right thing to do ,,,,or do I say go to a home , because I would feel awful if it was the disease talking and not him , if I go one way , and on the other, can I live with such disrespect with this disease he has for another ? how many years ? Totally confused and upset right now , hope tomorrow bring s a better me , and maybe sleeping will give him some time to process what he has said . I sure hope so , or praying tonight to ask God to give me the answers in all this . I know he has no one else , so believe God gave this to me to handle , no one else would be able to do this for him as he is so aggressive and I know his family wont help….not unless money is involved , then they will come out of the woodwork.( only after he has passed , they wont help him now while he is alive and needs it ) He has had very little money for yrs now , and we live off of very little , The man I knew is gone , and I guess I am grieving in a way . is that it ? I just don’t understand this at all . I hate bvFTD ! So sorry to you all , my apologies, as I had to vent or explode, Off to bed now and hoping and praying you all are having a better day and night then I am , Blessing s to you all

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Hi Michiganstressedlady, I realise your post was from fe. and I hope things have improved. I could relate to the feeling of everything coming down at once. At one point in my husbands illness, I felt it very appropriate to remind him and his family that the cost of a full time carer would be no less than 50k perineum, here in Australia. I am an American ex pat. At that time, I had been caring for him for 2 years. (I do still care for him). I proceeded to inform him and them that the amount owing me, if they wanted to look at in a monetary way, was 100k. That quieted everyone. To get to that point of me saying that, took me going through pain, heartache and being used. Until I did some research on carers and the cost of. I also reminded them, that I had not included holidays or overtime. Suddenly, the subject was dropped. I learned a big lesson that day: that looking at caring from a financial point of view, not to mention the re skilling that a carer may need once the patient has passed or improved, was important and that my care, even under the umbrella of love, had that aspect to it. I also began learning that I will not have may husband back the way he was before the illness returned. When he was diagnosed as terminal, I started to lose even more of him, as his personality began to change. My grieving started then and 2 years later , its continues like a passing wave. Sometimes I get moments or glimpses of his old self but that passes and I am reminded to keep letting of him and my expectations of him. That things were changing and I would be in more heartbreak if I didn’t accept that. It is a very lonely aspect of caring. Watching the person leave you before they are gone. When I share this personality change, the docs wondered if it was the disease as well. He’s on anti depressants which get adjusted from time to time and also diazepam when he starts to get real round up. I have even had to go so far as to say to him , in front of his doctor, and palliative care nurse that if his anger outbursts continue, to where I don’t feel safe, I am calling the police and they will take you to jail or to a hospital. There is no excuse for abuse, emotional, mental , or the threat of physical. This is where we hit our rock bottom. It has since improved. He has not handled his terminal illness well mentally and emotionally. We still argue at time and I find myself having to get tough very fast. I can’t get hurt or overwhelmed as it just gets worse. I get tough then I leave the room or leave the house, sometimes for hours or a couple days, still keeping in touch. He struggles with the ounce of spirituality that he has and is very ego and pride driven, he wasn’t so before the illness.
The nurses tell me that becoming very self absorbed and trying to control all things possible is normal for a terminal ill patient who feels he now has no longer over his life and his future. A faith would bring him the peace he seeks. I continue to try to grow mine through this. May you have a gentle day of self care, mnina

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@michiganstressedlady

Ok, I wish everyone well, but I have to go to bed just to save my sanity ….I just gave him a shower and being 520 lbs he decided to get on his knee’s which I told him not to do that , and he wont listen , so he got stuck on his knees in front of shower and couldn’t get up ! He flailed around until I could get him to listen to me , which would have been better if he would have from the beginning but finally using his cane and the counter and the toilet seat I got him to follow direction s and got him up …. What an ordeal , … Then to top it off he told me he better get his things in order now and get life insurance so he can leave his brother something and his nephew , and now that he is getting bad he said he figured it was worth it, Am I not worth it ? Then he said he didn’t want to marry me because he figured out… why should he, and then he said he might want to cause he might want to have help in the future…. what the **** …. I have been with this man for 12 yrs , taken care of him for all of that time , doing lawn work, house work ,laundry ,cooking , and everything sense I love him and taken care of him as he has been in the hospital and bedridden a majority of this time and he has never been able to do anything for the past 5 yrs. and he has said all these nasty , rude and totally mean things to me that have made me feel just awful and angry , and I feel like crying but also like I have done everything for nothing , no love back ;( …. is it the disease or him ? idk ,,,, I honestly don’t know what to do , do I let him stay because I still love him and take care of him because its the right thing to do ,,,,or do I say go to a home , because I would feel awful if it was the disease talking and not him , if I go one way , and on the other, can I live with such disrespect with this disease he has for another ? how many years ? Totally confused and upset right now , hope tomorrow bring s a better me , and maybe sleeping will give him some time to process what he has said . I sure hope so , or praying tonight to ask God to give me the answers in all this . I know he has no one else , so believe God gave this to me to handle , no one else would be able to do this for him as he is so aggressive and I know his family wont help….not unless money is involved , then they will come out of the woodwork.( only after he has passed , they wont help him now while he is alive and needs it ) He has had very little money for yrs now , and we live off of very little , The man I knew is gone , and I guess I am grieving in a way . is that it ? I just don’t understand this at all . I hate bvFTD ! So sorry to you all , my apologies, as I had to vent or explode, Off to bed now and hoping and praying you all are having a better day and night then I am , Blessing s to you all

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Hi @mnina You bring up some very valid points here again!

One is the loss of control our patients endure. I look back on all the losses my wife had to endure and it amazes me. I don’t have any idea how I would have coped with them. Not only the loss of control due to having an incurable, deadly disease, but then to lose over and over things in your life we all so take for granted. Early on it was driving, then walking, then her bed for a hospital bed, then diapers, and on and on. She too grasped for anything left in her control that she could possibly control.

You also make a good point of the fact we can only support our patients in their journey, but neither direct it nor force them to make the journey in a way we think they should. It took me a long time to go from thinking ‘well, this is how I would do XXXX’ to ‘I am happy she is deciding to do XXXX her way’. One of the toughest in this area was when she wanted to make some amends with certain family members, but was perfectly content to not do so with some others.

As to the frustration you speak of, I can totally relate! I used to keep an old pillow on the sofa in our living room. There were many, many nights and days when I would collapse on that sofa and beat that pillow unmercifully! It helped relieve my stress, got rid of some weird kind of negative energy I must have been housing, plus I could cry into it and my wife couldn’t hear me. She would get very depressed if she knew I was at one of those ‘at the end of my rope’ days so this helped me mask that for her.

I also hope @michiganstressedlady is doing as well as we can hope!

I wish all caregivers peace, courage, and strength!

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Interesting study on something every caregiver most likely already knows! We, as caregivers, bear a great burden. Plus when you look at the numbers on the value of our services — no wonder average folks cannot afford outside help!

http://www.upi.com/Health_News/2017/08/17/Study-Families-bear-majority-of-dementia-related-costs/8741502973193/?nll=1

Courage, Strength, & Peace

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@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Hi @sallysue and @kdawn32,
I was intrigued by your question regarding pain perception in people with dementia. I have seen this same inconsistent reaction to pain in my uncle. I set out to research for information about it. The research literature revealed a couple articles of note:
– Altered pain processing in patients with cognitive impairment https://www.sciencedaily.com/releases/2015/05/150529131509.htm
– Pain and temperature processing in dementia: a clinical and neuroanatomical analysis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620514/

What caught my attention is that my Google search returned several results for online forums where exactly this topic was discussed among other caregivers who witnessed the same phenomenon. It is obviously a topic that requires further study.

PS: Sallysue – here is how you can start a new discussion on a new topic in the Caregivers group (for future reference):
1. Go to the Caregivers homepage https://connect.mayoclinic.org/group/caregivers/
2. Click START A DISCUSSION.
3. Write a title.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

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@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Thank you SO much. The articles are so helpful. Thank you too for the info on how to start a discussion. You are very very helpful!

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@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Thank you Colleen. I look forward to reading these articles. She also has issues with temperature,

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@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Hi @IndianaScott, @sallysue and @kdawn32,
Because my search returned so few evidence-based research studies and so many caregiver-reported cases, we took the question to a couple of Mayo Clinic neurology experts who specialize in dementia. Drs Nilufer Taner and James Watson wrote:
+++++
“Increased sensitivity or tolerance to pain are not symptoms typically associated with neurodegenerative dementias. Indeed, these dementias (e.g. Alzheimer’s disease, dementia with Lewy bodies etc.) do not involve the peripheral nervous system nor the brain regions involved in pain perception.

That said, people with dementia, particularly those in advanced stages can suffer from a variety of problems that can lead to pain (such as bed sores, musculoskeletal pain due to reduced mobility etc.). Furthermore, their behavioral responses to certain situations can become enhanced or distorted which can conceivably influence their responses to adverse sensations or situations such as pain.

Having said all this, to the best of my knowledge there are no concerted studies investigating pain perception in dementia patients (ideally in the mild stages), so it is possible that we, as physicians and researchers, do not yet know all aspects of a potential pain-dementia relationship.”

“I agree with what my colleague said and add that people with dementia can sometimes perseverate [repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased] on things as well which can influence this sense of those around them that there are periods of more pain issues. The pain issue may not have changed, the patient with dementia’s focus on the pain issue may have changed. Pain medications are challenging in their usage in people with dementia as the medications can further cloud cognition or slow cognitive processing. Distraction and things that keep a patient actively engaged in other things is often useful in these situations.”

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Hope this helps.
Colleen

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@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don’t touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn’t even develop. It’s a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don’t. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn’t forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I’ll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull…..etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think “I need to take my pills” so in that thought going through it goes to “I took my pills” even though they didn’t.
Hang in there @sallysue. It’s a long, long, long, challenging road but you’re not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Thank you @colleenyoung Wonderful to get this information. All in all, a very tough issue for patients, caregivers, and even the medical professionals. Always good to know we are not alone when we are flummoxed by something in caregiving!

Peace

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