Introductions: Are you caring for someone with dementia?

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?

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!

@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.

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.

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.

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

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

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

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!

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