Looking for advice regarding wife's progression (10 years)

Posted by DanL @tunared, Jan 28 2:08pm

My wife has been diagnosed with dementia and it has been ongoing for almost 10 years. However, last night was new to me. she went to bed about 15 minutes before me, then when I arrived and tried to go to sleep, it all started for the next 4 hours. everything from divorce, to we have no relationship, to we never talk, to who are you?, to where are we and when will we go home (we were home), to whose house is this. She eventually went to sleep and didn't remember anything about last night. I called her PCP and was called back by assistant told to go to an urgent care clinic and get her tested for a UTI. I'll take her there when she get's back from her daily trip to the gym (60-90 minutes on a treadmill and I drive her).
my mind was going all night about what she was talking about. I tried to calm her down last night but she was just wound up and sometimes I couldn't get a word in. I'm not sure how to handle this and I'm looking for advice from someone who has gone through this. Is this another step in her progression? what should I look out for? any help/suggestions would be greatly appreciated. There is no one I can talk to in this situation. I'm really down now

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

@windyshores

@elsmore do you have a support group? Can you afford respite? Have you considered a hospice evaluation? My mother qualified for hospice and had those services for 3 years, off and on. We got an aide 5 days a week, a nurse, social worker, volunteer, and chaplain. Too many people think hospice is for imminent death! Hospices vary on who qualifies but it is worth a try.

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the relationship between a mother and daughter is totally different than a husband and wife of 55 years. A 50 year old daughter/son can tell their mother to do something and she will do it. a 75+ year wife will not do anything her husband says unless he is good a persuasion.

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@tunared

So what do you do when she refuses to go to urgent care for a UTI test and refuses to take an over the counter UTI test, insisting that she does not have a UTI. After 55 years of marriage, it's tough to make your partner do anything she doesn't want to.

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Resistance to care is incredibly frustrating. It’s actually the most challenging part of caregiving for me. Bith if my parents are resistant. I learned to just do the best I can. I might offer bribes of a favorite treat or special movie. Some suggest that you say the doctor appointment is for yourself and ask them to accompany them. Once there, the nurses may have more luck with convincing her to give a sample. Ot doctor may treat with a maintenance dose.

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@tunared

So what do you do when she refuses to go to urgent care for a UTI test and refuses to take an over the counter UTI test, insisting that she does not have a UTI. After 55 years of marriage, it's tough to make your partner do anything she doesn't want to.

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Whenever my husband (Alzheimer's - at least 8 years in) doesn't want to do something, like take a pill, etc. I tell him he could die if he doesn't. It works. He doesn't want to die. If he doesn't want to shower, I tell him he could get a bad infection. It works.
Re UTI, if she has one, she will eventually feel pretty bad pain and may become cooperative.
Would the doctor prescribe an antibiotic to be on the safe side?

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Hi @tunared, Do you think it would have helped to remove yourself and go to another room? As long as you were there, there was a target for her anger.

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@tsc

Hi @tunared, Do you think it would have helped to remove yourself and go to another room? As long as you were there, there was a target for her anger.

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I did just that and it worked for awhile. 4 hours later she came and started in again but not as vicious as before. the next day, she did not remember anything. Thanks for your suggestion.

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Any sudden change in status or behavior should raise the question of what might be the cause. A fever or infection (even without other symptoms) could do this. An OTC (over the counter) medication, such as an antihistamine could do this (common ingredient in OTC sleep aids). There is a condition called "sundowning" that is common in moderate to advanced dementia, where early evening and nighttime restlessness and agitation may occur. Old people (in general) and dementia patients (specifically) tolerate any medication less well than younger people, and even when a medication is needed, it is likely to be at a much lower dose, so medication adjustment might be indicated. Any drugs used to treat agitation and restlessness have the potential to actually make the condition worse (use at low dose, if at all). So any sudden change in condition should tell you, something is going on.

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@wctdoc1943

Any sudden change in status or behavior should raise the question of what might be the cause. A fever or infection (even without other symptoms) could do this. An OTC (over the counter) medication, such as an antihistamine could do this (common ingredient in OTC sleep aids). There is a condition called "sundowning" that is common in moderate to advanced dementia, where early evening and nighttime restlessness and agitation may occur. Old people (in general) and dementia patients (specifically) tolerate any medication less well than younger people, and even when a medication is needed, it is likely to be at a much lower dose, so medication adjustment might be indicated. Any drugs used to treat agitation and restlessness have the potential to actually make the condition worse (use at low dose, if at all). So any sudden change in condition should tell you, something is going on.

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Thanks for your comments. the only drugs she has been on have been long term with no changes is dosage. I'm guessing it's another step in her progression.
Her mother has Alzheimers and lived with us for 18 years, so even though I know what to expect, I'm still scared & sad to see where my partner of over 55 years is heading.

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@tunared

I did just that and it worked for awhile. 4 hours later she came and started in again but not as vicious as before. the next day, she did not remember anything. Thanks for your suggestion.

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Just remember, @tunared, her brain is broken and there's no rhyme or reason to her behavior. It's evidence, and the result of of her disease.

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@tunared

thank you (and this website) knowing I'm not alone in this trip. I keep feeling like I'm losing it.
Thank You

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@tunared I've gone thru alot of emotions with my hubby and feeling like i'm gonna lose it has been one of them. This platform has helped with sharing my struggles and listening to what others have to say and knowing I'm not alone, even tho I have felt alone. Do you attend any in-support groups? I find it helps with putting a face to a name to share...but this is great as well.
I told myself for the longest time, that "i got this" not realizing that I would eventually need support and I am SO glad that i finally got the support because it has made such a big difference. The strategies and tips on how to handle certain situations has been invaluable because it could be things that I wouldn't have thought. Know that you ARE NOT alone!!!

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@tunared

Thanks for your comments. the only drugs she has been on have been long term with no changes is dosage. I'm guessing it's another step in her progression.
Her mother has Alzheimers and lived with us for 18 years, so even though I know what to expect, I'm still scared & sad to see where my partner of over 55 years is heading.

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I understand. Every patient is different (with a lot of overlap). It was the suddenness of her change that made me think there could be another cause (I'm a retired physician). But it certainly could be just natural progression. Unless it resolves quickly, it is usually worth checking with her physician. It isn't my intent to offer medical advice as I've been retired a long time and I'm now a caregiver with a medical background.

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