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.

@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?

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@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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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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@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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@colleenyoung

@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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Not yet. Hopefully will see the MD this week and talk with him re whole situation. thanks

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@colleenyoung

@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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Yes. I have made several close friends and family members aware oft my concerns and need to do a better job of making sure we are both getting enough rest and freedom from unnecessary demands. I may need to ask my son to spend more time with him and arrange for more help with odd jobs around the house. As a retired physical therapist, I know how difficult the rehab is following a total knee replacement and am dreading it. I've begun to see what family and friends will be available to help for the first few weeks. I will need extra patience and understanding of my husband's inability to give me help when I need it.

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@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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Hi @leeandpat – I can really relate to the issues you are having. As @colleenyoung mentioned – I'm facing several of the same ones myself. I will share some of the things that have been helpful to me.

This year I joined a Caregivers Support Group at our local Council on Aging. I learned that one of the services our local hospice offers is grief counseling for caregivers. The patient does not have to be end-stage. At least here in North FL, hospice provides support for any dementia cases that are referred to them. I learned that you CANNOT do this alone. My advice would be to seek out a therapist/counselor, start looking at the care facilities in your area – even if you won't need them for awhile, and find out what hospice can do for you. All of these things brought me tremendous peace of mind.

In regard to your husband's anger issues, I know every case is different. For me, its important to remember that anger and fear are very close cousins. I find that when my husband is anxious or afraid about anything going on in our lives, he either tends to get very weepy or else have an angry outburst – but the anger is more like a child's tantrum. It's not something that causes me – or family members – to fear for my safety. Anyway, I have learned that when I have medical issues, it is VERY scary for him so it's better if I downplay them and have a friend or relative take me. If I were you, I would consider letting your husband stay with a relative while you have your knee surgery. Also, you might ask your surgeon about the possibility of going into rehab yourself for the first week or two after knee replacement so you can really concentrate on your own recovery. I had a friend who did that and she said it was the best decision she ever made!

Is there someone you could talk to -I would say outside the family – to get some constructive suggestions on your husband's anger issues as well as how you might plan and schedule your knee surgery in a way that keeps both you and your husband safe and in a good frame of mind? Maybe a counselor or therapist?

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Thanks, Debra. There's no room for either of us in our local son's home. But I am searching for respite care for my husband somewhere but we live up in the mts. of northern CA so facilities are limited. The only option I've found so far is to hire a part-time licensed caregiver to supplement help by "willing and available" friends and family. Medicare will usually not pay for in house Rehab/Nursing facilities unless you're in the hospital for at least 3 days and need skilled nursing or therapy. It's probable that I'll be discharged from the hospital the next day. I've started attending a Caregiver Support Group at our hospital and may be able to get some direction from the social worker who facilitates it. I'm also in touch with the HHS office in our county. One of my closest friends is also a licensed counselor and is a good sounding board. Tomorrow i have my first appointment with the surgeon I think will be doing my surgery if necessary. I'm hoping to get more answers and guidance from him.

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@leeandpat

Thanks, Debra. There's no room for either of us in our local son's home. But I am searching for respite care for my husband somewhere but we live up in the mts. of northern CA so facilities are limited. The only option I've found so far is to hire a part-time licensed caregiver to supplement help by "willing and available" friends and family. Medicare will usually not pay for in house Rehab/Nursing facilities unless you're in the hospital for at least 3 days and need skilled nursing or therapy. It's probable that I'll be discharged from the hospital the next day. I've started attending a Caregiver Support Group at our hospital and may be able to get some direction from the social worker who facilitates it. I'm also in touch with the HHS office in our county. One of my closest friends is also a licensed counselor and is a good sounding board. Tomorrow i have my first appointment with the surgeon I think will be doing my surgery if necessary. I'm hoping to get more answers and guidance from him.

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Hi @leeandpat – I know what a challenge you are facing. But check with your social worker friend about Medicare in relation to respite care. The social worker that facilitates our Care Givers Support Group told us that Medicare will pay for respite care so the caregiver can get away as long as the "patient" is in a medicare-approved facility for the duration of the time. And one of our group members has used this option – getting away for a vacation herself each year while her husband is cared for in the facility. Good luck with your surgeon's appointment. Can you check with your Caregivers group and your friend to see if respite care is handled the same way there in CA?

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@debbraw

Hi @leeandpat – I know what a challenge you are facing. But check with your social worker friend about Medicare in relation to respite care. The social worker that facilitates our Care Givers Support Group told us that Medicare will pay for respite care so the caregiver can get away as long as the "patient" is in a medicare-approved facility for the duration of the time. And one of our group members has used this option – getting away for a vacation herself each year while her husband is cared for in the facility. Good luck with your surgeon's appointment. Can you check with your Caregivers group and your friend to see if respite care is handled the same way there in CA?

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Thanks, Debbra. I already have an application for respite care. Would probably use it only for a caregiver at home. Here they pay $1000/year. Not sure if it's for more than one year only. Pat

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Yes. It's so helpful to hear about others' struggles, tho so sad. When my now 75 year old husband who was officially diagnosed with Alz. in 2013, and I were house shopping, we were able to find a rancher with a fenced in back yard. I know that pet therapy is so beneficial for mentally and physically handicapped people so we got a rescue puppy. What a great decision! My husband loves to walk her around our neighborhood and play with her. She makes us both laugh which is good therapy for us both. I now have to be the one to clean up the dog deposits but am glad I can still do that. I will probably be getting a knee replacement this summer, so I'll use that activity for my rehab. 🙂 Thankfully, Lee still has a great sense of humor. She is a wonderful companion when I have to leave him alone for a couple of hours too. So far, so good. I'm trying to be grateful for how things are going most of the time as I know it's going to be getting a lot harder in the future. I know the need for caregiver at home is coming sooner than I had "planned". 🙁

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@leeandpat

Yes. It's so helpful to hear about others' struggles, tho so sad. When my now 75 year old husband who was officially diagnosed with Alz. in 2013, and I were house shopping, we were able to find a rancher with a fenced in back yard. I know that pet therapy is so beneficial for mentally and physically handicapped people so we got a rescue puppy. What a great decision! My husband loves to walk her around our neighborhood and play with her. She makes us both laugh which is good therapy for us both. I now have to be the one to clean up the dog deposits but am glad I can still do that. I will probably be getting a knee replacement this summer, so I'll use that activity for my rehab. 🙂 Thankfully, Lee still has a great sense of humor. She is a wonderful companion when I have to leave him alone for a couple of hours too. So far, so good. I'm trying to be grateful for how things are going most of the time as I know it's going to be getting a lot harder in the future. I know the need for caregiver at home is coming sooner than I had "planned". 🙁

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@leeandpat – First, it IS sad. Terribly sad. I know the feeling of trying to be grateful since we know things are going to get worse. It's heart-breaking. My husband was an aeronautical engineer and to see him struggle with making a phone call on a flip phone just rips my heart.

Second, you may want to join the Joint Replacement group on Connect. I've had two knee replacements (all went beautifully) and it was nice to have a place to ask questions and express concerns. Here is the link:
https://connect.mayoclinic.org/group/joint-replacements/
Second, I want to check on you when you have your surgery. Will you post when you are going to have your knee replacement?

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