1. < Caregivers: Dementia

Alzheimers: When should someone not be left alone?

Posted by suerc @suerc, May 19, 2019

I have a neighbor who just got a Dx of alzheimer. My mom passed away from this in Feb so I know what is all about. We could see him in the past or starting to repeat himself. My question for you is his wife travels to see her elderly dad out of state about every other weekend. Should we be worried about him at this point. He has taken care of our pets for weekends at a time but lately we have to write everything down and he has still. Even calling us asking us what to do.

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rmftucker | @rmftucker | May 23, 2019
In reply to @debrat1 "Aww, so cute! I just hate it when people are so callous and decide to throw..." + (show)
@debrat1

Aww, so cute! I just hate it when people are so callous and decide to throw away an animal like trash. If your not going to be responsible then don’t get one. I agree. Ill tag you @gingerw to keep in loop. I kept telling mom that something was up with dad and she wouldn’t accept it. It even took me awhile. It’s strange looking back. Daddy was such an easy going, beloved and fun person who seldom lost his temper or said anything against others. There were several instances that I thought wow that is so unlike my dad. I remember exactly though when I realized something was definitely wrong though. He and mom were at my house and we, my mother and I, were discussing something about his mothers cooking being so good when I was small. When I say there was an explosion I’m not exaggerating. Out of the blue he exploded and jumped up screaming at me not to ever talk about his mother again and kept telling my mother to come on because he was leaving. I was dumbfounded. He went out the door. I told mom to wait and went after him. He was standing by the porch and I asked him what was wrong and if he’d sit down with me for a minute. I believe he was as confused as I was. He did sit and I asked him what was wrong and he said something about his mom again. I told him no one was talking bad and how much we all loved her. Then it was over. He came in and they stayed until the visit was over when it originally was going to be. I took mom aside and asked her about it. She aid he’d been doing strange things more often. That’s when I told her he has to see and doctor and can’t let it continue without knowing. I lost him a piece at a time after that. Long, slow and painful. One night my mom called me around 1:00am and says daddy has lost it and shoving her. I could hear him through the phone ranting. So not my father, he was gentle and my mother and him were best friends. I never heard a real argument between them. I live about two hours away from home there. I told her to tell daddy I wanted to talk to him. She told him and he got on the phone mad. He’s shouting she wouldn’t let him have the keys to the car. I was able to talk him down until he was calm and back to normal. He gave my mom the phone and I asked if she thought I should go over. She said no she thinks he’ll be fine now. I called the next morning and we discussed it. I explained that she can’t have him be physically combative towards you. He doesn’t mean it but that she could be hurt. It happened again in the middle of one night and we went through the same scenario. I told her after that, if it happens again she has to accept we will need to do something about it. My whole family are law enforcement officers and I’m well aware of something called a Baker Act. I’m sure everyone is aware too. I told her we were going to have to get him to the hospital and get him expedited help for not only her safety but his. A month or so later I drove over at 3:00 am in the rain after talking him down again. I got there and told daddy I wasn’t well and needed to go to the hospital and needed his help to go. I wanted this calm. When we got there I asked him to sit with mom a minute. Let me say this was not anything she wanted. I can’t explain how difficult it was for me. My daddy and I were very very close. I was his standing for a son. The oldest of two girls but a big tomboy. Daddy took me fishing, taught me basketball, took me to the place where the guys played pool and everywhere else I wanted with him. We were buddies. Anyway, I went in and explained the situation so they could have a heads up in case it went south. He was very calm and accepting. I think he understood.
This has gone on longer than I realized. I’ll finish in a later post but just wanted you to hear about my experience. Thanks!

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This is so similar to what I experienced with my husband and was directed by the social worker at VA Clinic to take him to Senior Behavioral Unit at the local hospital for evaluation. I wondered how we were going to get him to go, but he had complained of some chest pain a short while ago so I said the Dr. wanted him to go have it checked out. Worked and he willingly went. I was able to take to the Dr. before he went into exam room and fill him in on why we had brought him in. I was hardest thing I ever did to have him placed in a Care center, but the best for everyone. I couldn't care for him at home any longer.

REPLY
1 reply
rmftucker | @rmftucker | May 23, 2019
In reply to @sallysue "Thank you for the first half of the story. Was he diagnosed with Alzheimer’s? Do these..." + (show)
@sallysue

Thank you for the first half of the story. Was he diagnosed with Alzheimer’s? Do these outbursts happen to most Alzheimer’s people? This scares me. So far my sister is quiet and compliant. She has had dementia for about 7 years. Is this something my husband and I need to watch and prepare for? Sallysue

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Personality changes are common and may be short episodes or more lengthy. As dementia increases the changes become more permanent and noticeable

REPLY
providence1960 | @providence1960 | May 23, 2019
In reply to @rmftucker "This is so similar to what I experienced with my husband and was directed by the..." + (show)
@rmftucker

This is so similar to what I experienced with my husband and was directed by the social worker at VA Clinic to take him to Senior Behavioral Unit at the local hospital for evaluation. I wondered how we were going to get him to go, but he had complained of some chest pain a short while ago so I said the Dr. wanted him to go have it checked out. Worked and he willingly went. I was able to take to the Dr. before he went into exam room and fill him in on why we had brought him in. I was hardest thing I ever did to have him placed in a Care center, but the best for everyone. I couldn't care for him at home any longer.

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I know I am facing that down the road...even with caregiver assistance it is often overwhelming. We caregivers need to take care of us too...it’s a hard decision for us to make but the best for all .

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | May 23, 2019
In reply to @providence1960 "I know I am facing that down the road...even with caregiver assistance it is often overwhelming...." + (show)
@providence1960

I know I am facing that down the road...even with caregiver assistance it is often overwhelming. We caregivers need to take care of us too...it’s a hard decision for us to make but the best for all .

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I agree @providence1960 and @rmftucker Caregiving is filled with times of overload, being overwhelmed, and misunderstood. Decisions regarding care are often challenging beyond anything we could have previously imagined.

As I have said more than once 'superheros only exist in the comics and not in caregivers'. Each one of us can only do what we are able to as we focus on what care our loved ones need -- at any specific time. Then be ready to see it all change up in an instant and the demands and our abilities to meet them likewise change. Knowing we are making the best care decision can soothe our hearts, but rarely, if ever, make the decisions easy or easier.

Strength, courage, and peace

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Mentor
Scott, Volunteer Mentor | @IndianaScott | May 29, 2019

Thinking about you today @suerc I hope things are going OK for you these days. Also hope your furry friends are all well, too!

Any changes with your neighbor?

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leeandpat | @leeandpat | Jun 21, 2019

My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz. meds for about 4 years and we saw no significant improvement so decided to stop. I basically tried to follow the recommendation of good diet, exercise, and socialization. At age 74 he finally stopped skiing with his 84 year old buddy this past season but they still ride their bikes together occasionally-about 15 miles last month. He's able to walk our dog around the neighborhood as long as he stays on the same path; and many of our neighbors know him.

He's now in Stage 2 and is requiring more help with ADL's such as dressing and personal hygiene. He occasionally needs reminders about table manners, but so far we can still go out to eat with our friends. I can leave him alone for about 3 hrs. and he's content to stay home and watch TV. However, he can't read, write or tell me or our sons what our names are. If the phone rings he'll answer if if the caller ID says it's me, but then he can't remember how to hang up. He's having more and more trouble following directions, remembering which room is the bathroom, completing sentences, etc. He loves "talking" to people and especially kids. He has a wonderful sense of humor and people used to say that it was hard to believe he has Alz. My goal has been to keep him home with hired caregivers as long as possible (but not yet) and then admit him to the new VA home about 1 1/2 hrs. away where it would be really difficult for me to visit him, especially in the winter because we live in the Sierra Mts. of California. One of our sons lives only 10 mins. away but his family and job keep him really busy so I don't like to bother them for help too much-yet! I am so grateful for the support of caring friends.

My biggest concerns now is that in spite of how hard I try be patient, I sometimes get frustrated which makes him frustrated too. Recently he's had some bad temper outbursts that could have physically hurt me or my other son. I have A. Fib and a pace maker and expect to get a knee replacement soon. I know I need to take care of myself or I cant take care of him, but I am most concerned about these moments of rage even tho they are over in a few secs. and only happen a couple times a month-usually when we are over-tired and stressed. My family and friends are starting to be concerned about my safety.
It breaks my heart to think about having him have to go to a home sooner that I had "planned'. I'd appreciate any words of wisdom. I'm trusting the Lord to help me make good decisions, but know that He uses other people to give me good advice. Thanks!!

REPLY
4 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 21, 2019
In reply to @leeandpat "My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz...." + (show)
@leeandpat

My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz. meds for about 4 years and we saw no significant improvement so decided to stop. I basically tried to follow the recommendation of good diet, exercise, and socialization. At age 74 he finally stopped skiing with his 84 year old buddy this past season but they still ride their bikes together occasionally-about 15 miles last month. He's able to walk our dog around the neighborhood as long as he stays on the same path; and many of our neighbors know him.

He's now in Stage 2 and is requiring more help with ADL's such as dressing and personal hygiene. He occasionally needs reminders about table manners, but so far we can still go out to eat with our friends. I can leave him alone for about 3 hrs. and he's content to stay home and watch TV. However, he can't read, write or tell me or our sons what our names are. If the phone rings he'll answer if if the caller ID says it's me, but then he can't remember how to hang up. He's having more and more trouble following directions, remembering which room is the bathroom, completing sentences, etc. He loves "talking" to people and especially kids. He has a wonderful sense of humor and people used to say that it was hard to believe he has Alz. My goal has been to keep him home with hired caregivers as long as possible (but not yet) and then admit him to the new VA home about 1 1/2 hrs. away where it would be really difficult for me to visit him, especially in the winter because we live in the Sierra Mts. of California. One of our sons lives only 10 mins. away but his family and job keep him really busy so I don't like to bother them for help too much-yet! I am so grateful for the support of caring friends.

My biggest concerns now is that in spite of how hard I try be patient, I sometimes get frustrated which makes him frustrated too. Recently he's had some bad temper outbursts that could have physically hurt me or my other son. I have A. Fib and a pace maker and expect to get a knee replacement soon. I know I need to take care of myself or I cant take care of him, but I am most concerned about these moments of rage even tho they are over in a few secs. and only happen a couple times a month-usually when we are over-tired and stressed. My family and friends are starting to be concerned about my safety.
It breaks my heart to think about having him have to go to a home sooner that I had "planned'. I'd appreciate any words of wisdom. I'm trusting the Lord to help me make good decisions, but know that He uses other people to give me good advice. Thanks!!

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Hello @leeandpat I'm sorry to read to your husband's journey with dementia. My name is Scott and among other things would like to welcome you to Mayo Connect! We have a robust community here with lots of folks who can offer suggestions, share advice based on their experiences, and lend a willing ear to listen, especially when the times get tougher than usual.

I am not any kind of medical professional so I speak only from my experiences. My MIL had dementia, I worked for the Alzheimer's Association for some years, and cared for my wife, who had many dementia-like symptoms as she fought brain cancer for over 14 years.

Every caregiver's patience gets tested often during our work! Don't be too hard on yourself for that. One thing I did learn is that as mental capacity declines so does our loved one's abiltiy to be logical and cope as their confusion gains on them. Corrections, etc. become more and more difficult since as they are confused to begin with, a correction often times makes their confusion grow worse.

The only thing I can say about some of the Alzheimer's drugs I know is that they aren't intended to make a patient better, rather they delay the onset of future symptoms. In my MILs case, her doctor told us her meds could help her stay on her current plateau for longer than without them and hopefully delay, but not prevent, future declines. You may want to check that with your husband's doctor.

While my mother-in-law never had bouts of combativeness during her years of illness, our daughter-in-law's father had those fits of anger. They quickly escalated and resulted in him needing a safer environment so he entered a facility. It was a hard decision, but it was the only right decision for both him and his wife, who was increasingly concerned for her safety and ability to manage him.

Often times, while careing for my wife, I failed to see the forest for the trees and it took our daughter or son to tell me some of the changes, etc. they were seeing in their Mom that I was missing. I would suggest you listen to your family's and friends' concerns for your safety. If tney are telling it to you, they must be sincerely believing it to be true. I remember when my MIL could no longer recall which room in the house was her bedroom. That was the tipping point for my wife to go home to work with her dad to get a caregiver in the house to protect her Mom from accidents and prevent any undo anxiety from her being alone and confused in her own home.

As to planning, all I can say is that disease follows its own plan, not ours. It progresses on its own path and timeline no matter what we may wish. We can only react as best we can as things change, often right before our eyes. I know I was nowhere near ready when my wife's doctor prescribed hospice care for my wife when he did. Luckily, well before that we had done all our advance planning we needed to do such as our wills, estate planning, power of attorney, medical directives, HIPPA, final arrangement decisions, etc. That was not only very helpful to me, but really helpful to our children.

Again, I am glad you are here! What questions do you have that most often creep into your caregiving thoughts?

REPLY
gznqk5 | @gznqk5 | Jun 21, 2019
In reply to @leeandpat "My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz...." + (show)
@leeandpat

My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz. meds for about 4 years and we saw no significant improvement so decided to stop. I basically tried to follow the recommendation of good diet, exercise, and socialization. At age 74 he finally stopped skiing with his 84 year old buddy this past season but they still ride their bikes together occasionally-about 15 miles last month. He's able to walk our dog around the neighborhood as long as he stays on the same path; and many of our neighbors know him.

He's now in Stage 2 and is requiring more help with ADL's such as dressing and personal hygiene. He occasionally needs reminders about table manners, but so far we can still go out to eat with our friends. I can leave him alone for about 3 hrs. and he's content to stay home and watch TV. However, he can't read, write or tell me or our sons what our names are. If the phone rings he'll answer if if the caller ID says it's me, but then he can't remember how to hang up. He's having more and more trouble following directions, remembering which room is the bathroom, completing sentences, etc. He loves "talking" to people and especially kids. He has a wonderful sense of humor and people used to say that it was hard to believe he has Alz. My goal has been to keep him home with hired caregivers as long as possible (but not yet) and then admit him to the new VA home about 1 1/2 hrs. away where it would be really difficult for me to visit him, especially in the winter because we live in the Sierra Mts. of California. One of our sons lives only 10 mins. away but his family and job keep him really busy so I don't like to bother them for help too much-yet! I am so grateful for the support of caring friends.

My biggest concerns now is that in spite of how hard I try be patient, I sometimes get frustrated which makes him frustrated too. Recently he's had some bad temper outbursts that could have physically hurt me or my other son. I have A. Fib and a pace maker and expect to get a knee replacement soon. I know I need to take care of myself or I cant take care of him, but I am most concerned about these moments of rage even tho they are over in a few secs. and only happen a couple times a month-usually when we are over-tired and stressed. My family and friends are starting to be concerned about my safety.
It breaks my heart to think about having him have to go to a home sooner that I had "planned'. I'd appreciate any words of wisdom. I'm trusting the Lord to help me make good decisions, but know that He uses other people to give me good advice. Thanks!!

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Have you considered an anti-depressant for your husband? During one of our visits to Mayo, we met w/a psychiatrist, & he suggested we try one. First one (can't remember the name) was not good; gave him nightmares. But he's been on Sertraline, generic for Zoloft, for almost five yrs & has never had any outbursts or aggressive behavior. He has always been a Type B-mellow guy in the 50 yrs that I've known him. He's 78 now; diagnosed w/ALZ nine yrs ago. 'Also on Donepezil, Memantine, D3, fish oil, turmeric-curcumin, PreserVision-ARENDS 2 (for macular degeneration). Blood work, excellent; probably in moderate stage. I, too, have a-fib. I hope to care for him at home as long as possible. God bless.

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leeandpat | @leeandpat | Jun 21, 2019

Thank you both for caring and replying to me. Yes, I know that those meds work for many people to slow down the progress of the disease, but his regression made no change with or without the meds. The ads usually say that "they MAY work for a SHORT time". We met with a new neurologist last week who asked if I wanted her to prescribe an anti-depressant. She agreed when I said that I didn't think it was necessary since his episodes seemed to be triggered by immediate stressers which we have to work harder to avoid. I've had experience with anti-depressants and know that they have multiple side-effects including more sleepiness. He's already using his C-pap faithfully for night time and naps and I certainly don't want it to get worse. After a 15 minute nap while watching TV he's alert for a couple more hours. We both take the supplements that you mentioned. I have been going to a local Caregiver support for at least 5 years and attended a new one at our hospital recently started facilitate by a medical social worker. Thanks again.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 23, 2019
In reply to @leeandpat "My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz...." + (show)
@leeandpat

My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz. meds for about 4 years and we saw no significant improvement so decided to stop. I basically tried to follow the recommendation of good diet, exercise, and socialization. At age 74 he finally stopped skiing with his 84 year old buddy this past season but they still ride their bikes together occasionally-about 15 miles last month. He's able to walk our dog around the neighborhood as long as he stays on the same path; and many of our neighbors know him.

He's now in Stage 2 and is requiring more help with ADL's such as dressing and personal hygiene. He occasionally needs reminders about table manners, but so far we can still go out to eat with our friends. I can leave him alone for about 3 hrs. and he's content to stay home and watch TV. However, he can't read, write or tell me or our sons what our names are. If the phone rings he'll answer if if the caller ID says it's me, but then he can't remember how to hang up. He's having more and more trouble following directions, remembering which room is the bathroom, completing sentences, etc. He loves "talking" to people and especially kids. He has a wonderful sense of humor and people used to say that it was hard to believe he has Alz. My goal has been to keep him home with hired caregivers as long as possible (but not yet) and then admit him to the new VA home about 1 1/2 hrs. away where it would be really difficult for me to visit him, especially in the winter because we live in the Sierra Mts. of California. One of our sons lives only 10 mins. away but his family and job keep him really busy so I don't like to bother them for help too much-yet! I am so grateful for the support of caring friends.

My biggest concerns now is that in spite of how hard I try be patient, I sometimes get frustrated which makes him frustrated too. Recently he's had some bad temper outbursts that could have physically hurt me or my other son. I have A. Fib and a pace maker and expect to get a knee replacement soon. I know I need to take care of myself or I cant take care of him, but I am most concerned about these moments of rage even tho they are over in a few secs. and only happen a couple times a month-usually when we are over-tired and stressed. My family and friends are starting to be concerned about my safety.
It breaks my heart to think about having him have to go to a home sooner that I had "planned'. I'd appreciate any words of wisdom. I'm trusting the Lord to help me make good decisions, but know that He uses other people to give me good advice. Thanks!!

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@leeandpat, I also like to bring in @debbraw into this discussion. Her husband has early stage dementia and recently she also had a knee replacement. I bet she will have some insights to share.

You may also be interested in this discussion:
– Dementia Anger Issues – bathing https://connect.mayoclinic.org/discussion/dementia-anger-issues-bathing/

Even though you know the anger is the disease, not the person, you have to know that you are safe. Have you talked with someone about how to stay safe?

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