Meet fellow Caregivers - Introduce yourself

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let’s use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@IndianaScott

Hi @coloradogirl It is good to have you here with the caregivers group! I read your post as well as your other post and it sure seems like you have your caregiving plate filled to overflowing. It is easy to get overwhelmed with caregiving as you know! I bet you are thankful for your Stephen Ministry training!

While each patient and situation is different, I know from my experiences with my MIL (dementia) and my wife (brain cancer with many dementia-like symptoms), it was always very hard to keep telling myself and believing 'it's the disease talking not the person'.

Also, my wife's neuro doctor told us, very early on in her disease progression, that a person with a brain illness often has their personality and personality quirks magnified a hundred fold. He also said rarely does their personality change, but what they were like before is a beast with brain diseases. It was very true with my wife!

It was interesting to me to read about how your MIL interacts with your FIL. When my dad was dying from congestive heart failure my mom all of a sudden began to constantly nag him to not rest, do more, sleep less, keep going, etc. Her doctor told us it was her way of coping with her fear of losing my dad.

What do you see as your biggest caregiving challenge right now?

Strength, courage, and peace

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I feel so much better hearing that someone else spouse has become kind of mean with sarcoid going to the brain . i get my feeling hurt alot.
thanks for sharing

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@chesneydell1965

I feel so much better hearing that someone else spouse has become kind of mean with sarcoid going to the brain . i get my feeling hurt alot.
thanks for sharing

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@chesneydell1965, so good to hear from you again. I was wondering how you were doing. I see from your short message that you have your hands and heart full with caregiving. I'm sorry to hear that your husband's disease has affected his brain function and causing him to behave negatively. It is hard to separate the actions from the person you knew. As @IndianaScott reminds us "it's the disease talking, not the person."
Do you have someone to help you and give you respite? How are your children?

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@colleenyoung

@chesneydell1965, so good to hear from you again. I was wondering how you were doing. I see from your short message that you have your hands and heart full with caregiving. I'm sorry to hear that your husband's disease has affected his brain function and causing him to behave negatively. It is hard to separate the actions from the person you knew. As @IndianaScott reminds us "it's the disease talking, not the person."
Do you have someone to help you and give you respite? How are your children?

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no I dont get any help , my mother lives with us also and I take care of her also she is a stroke victim.

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@chesneydell1965

I feel so much better hearing that someone else spouse has become kind of mean with sarcoid going to the brain . i get my feeling hurt alot.
thanks for sharing

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@chesneydell1965 ..Heartfelt sadness in what you are experiencing. I no longer care for my husband@home..He is in a Nursing home…his frontolobal dementia seems to manifest itself with him being totally indifferent to me when I visit. It hurts. I get it. It is the disease. I'm grieving the loss of our relationship as partners for 59 yrs, my love my all…every day is a challenge in this journey of Alzheimer's. Praying for you. Glad you came aboard.

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@coloradogirl

Hi all. I didn't want to just come in and drop my baggage so I guess I should introduce myself. I'm from Colorado. I grew up in Iowa and was part of the "caregiving team" and a Stephen Minister at my church for many years so this is not my first go-round with helping folks who are struggling with illness or grief issues. That said, the caregiving has piled on us deep and heavy this summer and we are struggling a bit. After a 6-year battle with breast cancer, my sister-in-law passed away in August and the entire family is in grief. Losing her at 57 was a big loss to all of us, so I'm using my Stephen Ministry skills to help family members navigate their grief process. On top of that, my in-laws live with me. My FIL has significant health issues and my MIL has mental illness and dementia due to a condition called Cerebral Amyloid Angiopathy. Because she's a bully and will literally prevent him from resting and sleeping, we are constantly dealing with drama both from her treatment of him and just her liking to create scenes. Thanks for letting me join the group.

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@coloradogirl – My heart is breaking for you. I can't imagine how difficult this is. My husband has dementia but its just him and me. What you are going thru must be so much more difficult. I've started seeing a counselor. It is a huge help. Are you getting any kind of support for yourself?

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@becsbuddy

@kw1904861 Have you started any therapy yet? How is it going? Been thinking of you

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He starts therapy monday. Hopefully he goes.. Hes on a new med now too.. So we will seee… And i also made an appt to see my therapist,… Thank u for asking… ❤

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@IndianaScott

Hi @coloradogirl It is good to have you here with the caregivers group! I read your post as well as your other post and it sure seems like you have your caregiving plate filled to overflowing. It is easy to get overwhelmed with caregiving as you know! I bet you are thankful for your Stephen Ministry training!

While each patient and situation is different, I know from my experiences with my MIL (dementia) and my wife (brain cancer with many dementia-like symptoms), it was always very hard to keep telling myself and believing 'it's the disease talking not the person'.

Also, my wife's neuro doctor told us, very early on in her disease progression, that a person with a brain illness often has their personality and personality quirks magnified a hundred fold. He also said rarely does their personality change, but what they were like before is a beast with brain diseases. It was very true with my wife!

It was interesting to me to read about how your MIL interacts with your FIL. When my dad was dying from congestive heart failure my mom all of a sudden began to constantly nag him to not rest, do more, sleep less, keep going, etc. Her doctor told us it was her way of coping with her fear of losing my dad.

What do you see as your biggest caregiving challenge right now?

Strength, courage, and peace

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@IndianaScott , what a thoughtful question! I saw this last night and spent some time thinking about it because it really helped me clarify the situation. I think we have three big challenges at the moment:

1) Staying positive while living with someone who is very negative. My mother-in-law has always been a negative person but she's also not handling the aging process well, and the constant complaining takes a toll.

2) Controlling our reactions when they do things that don't make sense and damage our home or cause safety concerns. This has been a frequent problem since they moved in, such as storing flammable foodstuffs on the stove.

3) Related to the first item, managing her expectations about independence, driving, needing help, etc. She has always been a very independent person (which I can respect, being one myself). However, she refuses help and continues to insist that she should be allowed to drive, go places by herself, etc., when her heath care team (OT, PT, etc.) is very clear that she cannot do this safely and probably never will again. When she doesn't get her way, she will shout, throw things and generally be difficult to manage. I think we're in a transition stage about this, where eventually (hopefully) she will accept that she can no longer do those things but right now it's like living with a teenager railing against authority, except that she also has issues with disinhibition and anger management thanks to the brain issues.

Thanks again for asking such a thoughtful question.

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@debbraw

@coloradogirl – My heart is breaking for you. I can't imagine how difficult this is. My husband has dementia but its just him and me. What you are going thru must be so much more difficult. I've started seeing a counselor. It is a huge help. Are you getting any kind of support for yourself?

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I appreciate your concerns but fundamentally, I'm okay, just stressed and a bit overwhelmed. I have considered returning to therapy but honestly I am not sure that it would be that big a benefit and it adds another weekly commitment that I don't have time or energy for right now. I spent years in therapy addressing child trauma / PTSD issues and at this point, I have good coping skills and a strong network of people that I can reach out to when I need support. Thanks again for your concerns and I hope that your counseling relationship continues to bring benefit to you.

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@kw1904861

He starts therapy monday. Hopefully he goes.. Hes on a new med now too.. So we will seee… And i also made an appt to see my therapist,… Thank u for asking… ❤

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He just punched me in my jaw… I cant call the police.. He wanted his car keys… Things are getting worse around here… No one is listening… It seems…

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@coloradogirl

@IndianaScott , what a thoughtful question! I saw this last night and spent some time thinking about it because it really helped me clarify the situation. I think we have three big challenges at the moment:

1) Staying positive while living with someone who is very negative. My mother-in-law has always been a negative person but she's also not handling the aging process well, and the constant complaining takes a toll.

2) Controlling our reactions when they do things that don't make sense and damage our home or cause safety concerns. This has been a frequent problem since they moved in, such as storing flammable foodstuffs on the stove.

3) Related to the first item, managing her expectations about independence, driving, needing help, etc. She has always been a very independent person (which I can respect, being one myself). However, she refuses help and continues to insist that she should be allowed to drive, go places by herself, etc., when her heath care team (OT, PT, etc.) is very clear that she cannot do this safely and probably never will again. When she doesn't get her way, she will shout, throw things and generally be difficult to manage. I think we're in a transition stage about this, where eventually (hopefully) she will accept that she can no longer do those things but right now it's like living with a teenager railing against authority, except that she also has issues with disinhibition and anger management thanks to the brain issues.

Thanks again for asking such a thoughtful question.

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Hi @coloradogirl You present some very challenging issues for caregivers for sure!

Again all the following is based on my experiences and I know everyone is different.

Managing my wife's expectations was always a challenge. This was true right up until she passed away. She was always sure (I interpreted this as 'wanting desperately') to do the things she used to be able to do. I did take to telling her only 'honey, we cannot do that right now'. Don't know how often I repeated that, but it was in the thousands I bet! Luckily, unlike your MIL, she was never violent about them. Being violent was the straw that broke the camel's back with my daughter-in-law's dad. They decided for their own safety they had no choice but to place him in a home.

Controlling our emotions is always difficult and I know more than once my emotions got the best of me and I lashed out. Wish I hadn't, but we are only human. I found it especially difficult when my wife wanted something immediately and some other demand was also just as forceful. Rock and a hard spot kind of thing. I counted to 10 over and over often — and kept an old pillow on the sofa in the living room, which I often used as a punching bag and crying pillow when things got super tough.

Keeping a positive mental attitude went hand-in-hand with my ability to control or not control my emotions. When my emotions ran amok it was super tough to keep my PMA. One thing I did was give myself permission to be down some days. I used the excuse to my wife that I was 'just extra tired' so she wouldn't think I was down due to her or the demands of caregiving. Don't know if that actually worked or not, but it often got us through those days when I felt like I was Joe Btfsplk from Li'l Abner (yep, I'm that old).

Speaking of old comic strips I believe it's important to also remember that caregivers aren't Shmoos either! We cannot grant every wish nor can we perpetually keep our patients happy. We can always do our best to meet their needs, but cannot always provide for all their wants. To help keep my PMA I often recited my mantra of 'I've got the easy job here. She is the one fighting for her life every day.'

Wish I had a magic wand!

Strength, courage, and peace

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@kw1904861

He just punched me in my jaw… I cant call the police.. He wanted his car keys… Things are getting worse around here… No one is listening… It seems…

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Hello @kw1904861 I would call police or 911 immediately for your own protection! You need to do all you can to protect yourself from physical violence!

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@IndianaScott

Hello @kw1904861 I would call police or 911 immediately for your own protection! You need to do all you can to protect yourself from physical violence!

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I know it's hard I cant imagine putting mine in a nursing home. but Scott is right . so if you dont want to do that what about introducing a long term facility

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@kw1904861

He just punched me in my jaw… I cant call the police.. He wanted his car keys… Things are getting worse around here… No one is listening… It seems…

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@kw1904861 You have taken the first important step on the path to safety by telling us that you have been the subject of violence. The next step is to contact experts in abuse. Like Scott said, I urge you to call the police or 911. They know about dealing with these situations. If you can't call the police, I suggest the National Domestic Violence Hotline.

Please visit the National Domestic Violence Hotline website http://www.thehotline.org/ On this website you will find a phone number to call 1-800-799-7233 or you can use the online chat and get help without saying a word. By calling the Hotline, you can work with professionals to find safety and solution that is right for you.

Where is he now? Are you somewhere safe?

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I’m the caregiver for my husband who has Dementia. I need info about devising a plan for him should I die before he does.

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@ltw

I’m the caregiver for my husband who has Dementia. I need info about devising a plan for him should I die before he does.

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Hello @ltw Nice to have you here on Mayo Connect! I am sorry to read about your husband's diagnosis.

I'm not a lawyer, but I know legal issues can vary by state, etc. so I would recommend you consult an attorney to get her/his advice on how to put together a plan for this instance. I know that is what my wife and I did. It was a huge help because these things can be or get very complicated very quickly.

How long have you been caregiving?

Strength, courage, and peace

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