What stage are we at?

Posted by lost55 @lost55, Sep 17 11:05am

Hi loss55 here,
Over the past couple of weeks my wife has become exceedingly accusatory and paranoid. I am it seems, the cause of all her problems and am purposely trying to drive her crazy by taking all her things and hiding them or using them. It used to be the morning was good, afternoon better and from sundown on it got bad. Now she is waking up “bad”.
The meds no longer seem to be of much help.
Anyone have this experience and is this a sign of late middle stage?
B

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Profile picture for ret2tus @ret2tus

@mariebrown4338 I have the same hard decision to make with a twist. That is, we live in a CCRC and the whole reason that we moved here is that memory care would be readily available when it became evident that my husband should move from our independent living apartment. I think he is between stage 4 and 5 right now, and I am feeling overloaded, taking care of everything regarding our household and him to a certain extent. He has not yet developed any issues where I have to care for him physically although hygeine has declined. His memory and executive function abilities are really shot. Any ideas as to what would be the deciding factor to move him to memory care, which is actually in the same complex as our apartment and where I could easily visit.

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@ret2tus
I am wondering the same thing. My husband is stage 5 and I have a place in mind for him that we toured and he said he liked. I have not yet completed the intent application because so far I am managing fairly well alone (not always well).
I guess I will know when it truly is always overwhelming (right now it is occasionally overwhelming).
Hugs 💮

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Profile picture for judimahoney @judimahoney

@ret2tus
I am wondering the same thing. My husband is stage 5 and I have a place in mind for him that we toured and he said he liked. I have not yet completed the intent application because so far I am managing fairly well alone (not always well).
I guess I will know when it truly is always overwhelming (right now it is occasionally overwhelming).
Hugs 💮

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@judimahoney I like that "occasionally overwhelming" and can relate to that 😄

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Profile picture for lost55 @lost55

@judimahoney
Yes PC is tuned in. About the only thing left is Rexulti which carries too many risks for her age and disease stage. Already taking the 3 major drugs for Alzheimer’s plus an SSRI.

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@lost55 What are the three major drugs for Alzheimer's, what SSRI is being taken already?

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Profile picture for bill2001 @bill2001

Greetings,
I use the 7-stage model for dementia, but keep in mind it is sometimes easier to gauge stages in hindsight rather than while you are in the arena. Sounds a bit like Stage 4 or even 5, which for me as a caregiver was the most difficult transition. Perhaps because at this time our loved one has progressed beyond the simpler "I forgot your birthday" stages.

For reference, here is a very simplified explanation of the 7-Stage Model for Alzheimer’s and Dementia.
Stage 1: All is well. No dementia.
Stage 2: You notice something is “off” with your loved one, but no one else does. Very mild cognitive decline. You may notice, but doctors, loved ones, and friends do not.
Stage 3: You know something is wrong, and others sense something is “off.” Mild cognitive decline. Loved ones begin to notice, decreased performance at work.
Stage 4: Everyone notices. You enter panic mode and begin seeking help from doctors. This is your transition from spouse to caregiver. Early-stage dementia, moderate cognitive decline. Difficulty socializing, concentrating, forgets recent events, trouble with finances. Day/date/time difficulties. Caregiver(s) becoming more involved in managing tasks for the patient.
Stage 5: Your loved one can no longer manage alone. Mid-stage dementia. Needs assistance with all activities of daily living. No short-term memory. Confusion and forgetfulness. Urinary incontinence may begin. Caregivers seek hands-on help. This is when caregivers seem to discover this forum, many of them already desperate and exhausted.
Stage 6: Speech makes no sense, personality and memories are completely gone. Mid-to-late-stage dementia. Does not know anyone’s name. Communication difficulties, both in speaking and understanding the spoken word, inappropriate behavior, may be agitated, wandering, no longer recalls personal history, address, or phone number. Double incontinent. Must be supervised and managed 24/7. Caregiver(s) require help now.
Stage 7: Can no longer walk unassisted, nor eat or drink without assistance. May be bedridden. Late-stage dementia: Difficulty eating and swallowing, angry outbursts, loss of speech. Must be supervised and managed 24/7. This is the final stage before death.

I hope you find this helpful, and I am sorry you are on this awful journey with us.
Love Bill2001

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@bill2001
Hello!
Thank you for the description of the stages of cognitive decline. I would just like to point out that much like the stages of grief, the symptoms can move back and forth sort of like on a sliding scale I guess between stages. Sometimes I think my husband is at stage 3 but then he will exhibit symptoms of stage four also. It gets kind of confusing doesn't it? I think we are all kind of desperate to pinpoint what exactly is going on with our loved one, but sometimes there's a bit of a gray area too. Sometimes I just don't know what to do because I think maybe he's getting worse and then I think well we had a good day so maybe he's not. Feedback is always welcome! Thank you thank you

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Profile picture for 1learningalot23 @1learningalot23

@lost55 What are the three major drugs for Alzheimer's, what SSRI is being taken already?

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@1learningalot23
Aricept, Namenda, Mirtazipine
SSRI - Duloxetine

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Profile picture for lost55 @lost55

@1learningalot23
Aricept, Namenda, Mirtazipine
SSRI - Duloxetine

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@lost55 My husband is on the generic forms of Aricept and Namenda, but I'm not really sure what they're supposed to treat or whether they're doing any good. Could you or some other knowledgeable person comment more on the value of the four drugs mentioned? Thank you.

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Profile picture for dianaml @dianaml

@bill2001
Hello!
Thank you for the description of the stages of cognitive decline. I would just like to point out that much like the stages of grief, the symptoms can move back and forth sort of like on a sliding scale I guess between stages. Sometimes I think my husband is at stage 3 but then he will exhibit symptoms of stage four also. It gets kind of confusing doesn't it? I think we are all kind of desperate to pinpoint what exactly is going on with our loved one, but sometimes there's a bit of a gray area too. Sometimes I just don't know what to do because I think maybe he's getting worse and then I think well we had a good day so maybe he's not. Feedback is always welcome! Thank you thank you

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@dianaml There are differences in the way the different types of dementia progress. It is my understanding that progression in Alzheimer's is stair step and that it doesn't reverse stages. However people with Vascular dementia can go back and forth between stages. Some days more alert and capable than others. My husband has Vascular dementia. Last week he was able to stay out of bed for the whole day! This is a significant change from his usual sleeping all day only up out of bed to eat and use the bathroom routine. Wow! I was so happy to have him "back" for just the day. You don't say what type of dementia your husband has been diagnosed with. It sounds like Vascular dementia but the person may have "mixed" dementia. It is nice to know what symptoms to expect but for me I am just taking it one day at a time and dealing with whatever he needs when it comes up. I find that just addressing the issues of the day reduces my stress level.

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Thank you.

I appreciate your input. My husband has been dx with MCI, not even dementia! I dread the day if that happens. It may not..thank you.....

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Profile picture for bill2001 @bill2001

Greetings,
I use the 7-stage model for dementia, but keep in mind it is sometimes easier to gauge stages in hindsight rather than while you are in the arena. Sounds a bit like Stage 4 or even 5, which for me as a caregiver was the most difficult transition. Perhaps because at this time our loved one has progressed beyond the simpler "I forgot your birthday" stages.

For reference, here is a very simplified explanation of the 7-Stage Model for Alzheimer’s and Dementia.
Stage 1: All is well. No dementia.
Stage 2: You notice something is “off” with your loved one, but no one else does. Very mild cognitive decline. You may notice, but doctors, loved ones, and friends do not.
Stage 3: You know something is wrong, and others sense something is “off.” Mild cognitive decline. Loved ones begin to notice, decreased performance at work.
Stage 4: Everyone notices. You enter panic mode and begin seeking help from doctors. This is your transition from spouse to caregiver. Early-stage dementia, moderate cognitive decline. Difficulty socializing, concentrating, forgets recent events, trouble with finances. Day/date/time difficulties. Caregiver(s) becoming more involved in managing tasks for the patient.
Stage 5: Your loved one can no longer manage alone. Mid-stage dementia. Needs assistance with all activities of daily living. No short-term memory. Confusion and forgetfulness. Urinary incontinence may begin. Caregivers seek hands-on help. This is when caregivers seem to discover this forum, many of them already desperate and exhausted.
Stage 6: Speech makes no sense, personality and memories are completely gone. Mid-to-late-stage dementia. Does not know anyone’s name. Communication difficulties, both in speaking and understanding the spoken word, inappropriate behavior, may be agitated, wandering, no longer recalls personal history, address, or phone number. Double incontinent. Must be supervised and managed 24/7. Caregiver(s) require help now.
Stage 7: Can no longer walk unassisted, nor eat or drink without assistance. May be bedridden. Late-stage dementia: Difficulty eating and swallowing, angry outbursts, loss of speech. Must be supervised and managed 24/7. This is the final stage before death.

I hope you find this helpful, and I am sorry you are on this awful journey with us.
Love Bill2001

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@bill2001 This is heartbreaking to read but very helpful. It shows your compassion and experience. Thank you for posting it. My own wife is Stage 4.

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Profile picture for ret2tus @ret2tus

@mariebrown4338 I have the same hard decision to make with a twist. That is, we live in a CCRC and the whole reason that we moved here is that memory care would be readily available when it became evident that my husband should move from our independent living apartment. I think he is between stage 4 and 5 right now, and I am feeling overloaded, taking care of everything regarding our household and him to a certain extent. He has not yet developed any issues where I have to care for him physically although hygeine has declined. His memory and executive function abilities are really shot. Any ideas as to what would be the deciding factor to move him to memory care, which is actually in the same complex as our apartment and where I could easily visit.

Jump to this post

@ret2tus
I am feeling overloaded too. My husband has MCI but has changed enough that I don’t even like him anymore (love, yes). He basically watches tv or phone screen 20 hours a day, does not get out of bed until late afternoon or evening, then straight to chair for more tv. I pursue my own interests but often wish he wasn’t even around. He’s incontinent from prostatectomy 20 years ago but can manage changing his briefs himself. So far does not need physical assistance. Basically I’m living alone most of the time.

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