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.

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

@debrat1

Aww, I have a Staffy mix who’s name is Gabby. She’s a rescue as all my others have been. She is the one one the right. I was reading through this because my father suffered this ghastly disease. His mother and two brothers were also diagnosed before death. I tested positive for the APEO 4 gene. Scary, although I know it’s not a promise that I’ll suffer also. The most frightening thing is that I’m so aware of the early signs now since we were able to have hindsight on Daddy’s, I am recognizing signs in myself. I have a girlfriend who talks with me and acknowledges that she has seen them too. I can’t get my family to agree and take it seriously.

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@debrat1 Welcome to Mayo Clinic Connect! We're glad you're here. I guess it can be both intimidating and enlightening to know that you have that gene. And that it might or might not cause you problems in the future to a greater degree than what you already recognized can be scary, am I right? Like @IndianaScott said, it's so important that family recognizes the issues. For my mother, she and my dad lived quite a distance away and I rarely saw them. On the times that I did I could really see what was going on. Please come back here and let us know more about yourself and let us know how we can help you.
Ginger

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@IndianaScott

Hello @debrat1 Love your pups! I have a rescue Lab and our daughter will be getting a rescue this Friday! I got Napa when a family got a pup as a 'gift' and then tired of her.

I wish you the best and agree that the future is never known to any of us.

On the topic of family recognizing, acknowledging, etc. our health journeys I am reminded of the fact we can not change those things that are out of our control. Throughout my wife's 14+ year journey there were those who consistently thought she was not 'really' ill or that I was just an alarmist when they'd ask 'how is she doing?' and I would answer honestly.

Glad you have your pups! I love their love!

Strength, courage, and peace

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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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@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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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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@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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Thanks for your sharing, @debrat1 I find it interesting and appreciate being able to read this post.

The first inclination I had with my MIL was when she visited our home. One floor, two bedrooms. She kept getting lost and not being able to find the bedroom, which was visible everywhere in the house. Plus that trip she always had to have her overcoat in view.

Thanks again! Looking forward to 'the rest of the story' as Paul Harvey used to say!

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@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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Hi @sallysue I am no expert on dementia at all, but I did work for years as a fundraiser for the national Alzheimer's Association and their medical research program. The disease can be quite different in each person. I think this is true of how most brain diseases act on folks. I know my wife reacted very differently to her brain cancer than anyone else I've met.

My MIL never experienced any hostility in all the years she fought it, but it is a fairly common symptom of the disease. On the other hand my daughter-in-law's father had quite a few months of hostile activity, which then stopped as suddenly as it started.

These types of things are so very painful to discuss, but if I learned one thing from my wife it was to talk and make decisions as soon as you can. As incredibly sad and uncomfortable as many of our discussions were, it made the journey a bit less rugged knowing I was able to follow what she wanted and our adult children and I never had to play the 'what would Mom have wanted' game.

Strength, courage, and peace!

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Thank you. That is very helpful. It just sends me into panic mode to think of the future of my sister who is very healthy. We did manage to have the driving talk with her and she admitted that she didn’t need the car since we go everywhere together. My husband talked to her from the financial aspect that it was an 11 year old car and she would never get a better price on it than now while it was in good shape. Our niece was looking for a car and offered the Bluebook price for it and my sister jumped on it to help her out! It was all legitimate but slightly staged by having the whole thing worked out before we started the talks. She was sad to have it pull away from the house but she was genuinely relieved that she didn’t have the upkeep on it to worry about and had all this money in her bank account. God was in it ALL. So I guess if she becomes confrontational or violent we shall depend on Him again. Plan B is to sell the house, split the money and get her in somewhere nearby where my husband and I can live separately from her. The only new thing with her is that she sleeps SO much. Thanks for talking with me. I feel so much better and calmer telling you the car story and remembering that it may all work out to the positive too. Thank you.

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@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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@sallysue As @IndianaScott said, there is a whole host of manifestations! For my mother, there was no hostility, basically she just shut down. She had a combination of Alzheimer's and Dementia and became pretty much mute for the last several years of her life. She stopped driving about 8 yrs before her death. She would sometimes eat if you put food in front of her otherwise you had to feed her. She slept a lot. She would sit in a chair and just look out at things; it was one of those "lights are on but nobody's home" type of expressions on her face. [A sad story here. My mother was a lifelong smoker, even though she supposedly tried to quit several times. My father continued to light cigarettes and give them to her. Some little remote corner of her mind knew to smoke those cigarettes. A year after she had passed, as he was moving out of their house, he found several cigarettes that had been lit but slipped out of her hand and apparently rolled under the couch. In his grief and sorrow his comment was, "I never knew about these. I wonder if God told me it wasn't time yet and he let them burn out rather them starting a fire." My heart just had to break for him at that comment.
Ginger

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@sallysue

Thank you. That is very helpful. It just sends me into panic mode to think of the future of my sister who is very healthy. We did manage to have the driving talk with her and she admitted that she didn’t need the car since we go everywhere together. My husband talked to her from the financial aspect that it was an 11 year old car and she would never get a better price on it than now while it was in good shape. Our niece was looking for a car and offered the Bluebook price for it and my sister jumped on it to help her out! It was all legitimate but slightly staged by having the whole thing worked out before we started the talks. She was sad to have it pull away from the house but she was genuinely relieved that she didn’t have the upkeep on it to worry about and had all this money in her bank account. God was in it ALL. So I guess if she becomes confrontational or violent we shall depend on Him again. Plan B is to sell the house, split the money and get her in somewhere nearby where my husband and I can live separately from her. The only new thing with her is that she sleeps SO much. Thanks for talking with me. I feel so much better and calmer telling you the car story and remembering that it may all work out to the positive too. Thank you.

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My favorite thing about Connect is the sharing @sallysue That is a great outcome for your sister with driving. It was one of the more difficult early potholes we hit with my wife. Luckily she had an appointment at Mayo and her neuro-oncologist was able to get her a test on their driving simulator. She was sad she failed, but he was so good at explaining and ultimately he was the one who said 'no more driving' and since it was the doctor she accepted it more readily than she would have from me.

Sounds like you have some solid plans in place! Things change, but always wise to be prepared! I remember my wife and I once laughing over the time she said to me "Gee, Scott, what is this? Are we on about 'Plan Double Z' now?

I hope the sun is shining wherever you are today!

Strength, courage, and peace!

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@IndianaScott

Hi @providence1960 'horrible disease' for sure! In so many ways! You are right about the stress of something as simple as your phone ringing! Great to read you have some help -- what a difference that can make!

Strength, courage, and peace

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My mom is on a roller coaster...she told me if her caregiver ever comes again she will throw her out! That’s what she tells me but than she tells the caregiver not to leave until I’m back home. I know there is humor in there somewhere! I’m so comforted by this group.

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@providence1960

My mom is on a roller coaster...she told me if her caregiver ever comes again she will throw her out! That’s what she tells me but than she tells the caregiver not to leave until I’m back home. I know there is humor in there somewhere! I’m so comforted by this group.

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Good afternoon, @providence1960 I recall those same feelings being exhibited by my wife. Hated having help, but inside very afraid to be alone or without help. Your 'roller coaster' analogy is perfect! Now that you say that I can even feel it again! In the beginning the big hills to climb and the huge drops, repeat, and repeat....then as the disease progressed it was more of those dang little ones -- up, down, up, down, up, down.

We can all keep looking for that humor!

I am very pleased to hear you find some comfort in this group! Caregiving can be such an intense, isolating experience!

Continued strength, courage, and peace!

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