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?

@timerdude

i am member of other groups here, but this seems to be the best choice for me. Scott, one of the members in your group, has invited me to join.
I am a disable vet married to another disable vet. We just moved to Colorado, in Aug. this year from Florida. I told my friends and his family that my husband could get better care from VA here. I convince him of this move, and our only grown child lives here, too. My daughter and I are not close, and she has no time or plans on helping her parents. But the real reason I push my husband for this move is me. I plan to die before him, even if he is in a wheelchair, full time. And he is 54 years and I am 66. I have been his caregiver for over 20 years, I am so burn out mentally (PTSD,too) and physically ( unable to feel my legs , but walk, and high blood pressure, due to stress. I have a painful neck and back , due to helping him off the floor, when he slips and falls, been his wound care nurse, and mental support to keep him going. He denies he needs help to other people, and prides himself to family and friends that he is not depend onone, and cares for his wife all the times(cause he drives, and I can not). My physical health is poor, and my mental health is worse. I feel so alone and just want to live in the streets, to care only about me. My husband does not touch me, only when I help him up off the floor, or care for his wounds. So how I am no a good caregiver, or wife or mom, cause nobody ever ask me what I need or want in life. I feel like workhorse , so to be not even notice when I am gone, just replace by a new wife( my husband said he would find someone, when I die, he needs help). I hope to find a friend here in this group and support.

A caregiver, looking for a caregiver…….

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Thank you….for just being here. As for the knees……I have both replace….10 years apart, because of lack of time, and no to care for me. My hands are now painful and my wrist…….I was told I need a shot on both my wrist……might help for a few months… but have cancel my doctors appt. three times already. Time will tell, if I can on longer. God Bless you, for your big heartfelt reply!

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@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Thank you. I need to be able to share my concerns with people in the same siruation. While we are not married I have been his partner for 30 years and am his ptimary caregiver. Is it better to agree wifth him when he says he has done something in the past or just agree eith him? He can get angry whem I try to explain that something is not possible.

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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My situation is much the same as yours. My husband also had a shunt inserted for hydrocephalus and it did not improve his memory issues either. He is now diagnosed with alzheimers. I see the deterioration and have no idea how to deal with some of the issues we are facing. I am so grateful to have found this group.

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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Hi @traveler17. What can I say? Caregiving is such an incredibly demanding role and one none of us are ready or prepared for. Especially us family member caregivers. Try and remember there are many of us here. We have experienced much in our caregiving roles. We have had good days and bad. We have handled some chores with aplomb, some with little grace and some looking like one of The Three Stooges. But we have had many experiences and can offer ideas, support, and suggestions. No question is too small, insignificant, or irrelevant to ask here! In the 14+ years as my wife’s primary caregiver (brain cancer) I had to deal with a huge variety of issues. Physical, emotional, family, conflict, etc. So know were are here, we do not judge!

Peace, strength, and courage!

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Do neither if neither is true. With my sister we just smile and nod when she says something untrue. If outsiders are in the conversation I say something like “I don’t remember it that way. I remember …” and that usually gets her either quiet or she picks up from what I said. Example; she was telling the story of selling her house on the very first day it was on the market (which she did not do). I said, I don’t remember that but I do remember the man who came up to the door in the middle of the current snow storm to inquire about buying the house. Oh yes, she said and proceeded to say what I said in her own words and then dropped it. Several years ago on this post someone gave the 6 magic words to diffuse the anger of a dementia patient. They are “I was only trying to help”. They have worked every time for me in these past 4 years with my sister.

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Hi traveler17:
Oh how hard some days can be with the memory thing especially when the patient does not realize what is and what isn’t? I have learned over the years not to correct what I know to be true, rather just go on with a conversation that might not be right for you but
is very right for the patient. My energy must be spent doing the care that is necessary and some days I just don’t have the strength
to do anything other than agree with all that is said. In the end, it really doesn’t matter and sometimes trying to explain just doesn’t
work for me or him. Memory is very tricky also, sometimes I think he doesn’t know what I am talking about and then the memory
pops in and I am very surprised that he is thinking about something that I thought had left him long ago, Anyway, it is a challenge
to stay on top of the caring thing with all one has to do. Bless you for your loving spirit. OZYS

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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I do appreciate your support. We are going on a cruise where we will be seated at dinner with people we do not know. Any suggestions on how to handle it when he interrupts and comes up with statements that are simply not true? I dont want him to be embarassed or burt if possible. Any suggestions would be so gratreful.

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Traveler17, how well I can relate to your situation We will make it through this because we love those for whom we are caring so very much. Sometimes I want the world to stop so I can get off ur then I realize how much he needs me or perhaps how much I hope he needs me. Hard to tell sometimes.

REPLY

Hi traveler17,
Last year I took a course through the Alzheimer’s Association for caregivers. They handed out a card to each of us, like a business card, on it was a statement explaining your “love ones” condition, which let other person know that their behavior would be a little “off”. You could write your own on card stock or even printer paper with your computer. The one they passed out says, “My loved one has Alzheimer’s disease (memory loss) and is sometimes confused. Thank you for your patience and understanding.”

Good luck!!

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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@tntredhead This is a difficult situation. Blessings and prayers go out for you!

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Hi traveler17:
What you could do on a cruise is asked for a private table just for the two of you, which would eliminate the need for him to interact with others, of course it limits your ability to be social. I used to go out for a little time in the afternoon while my husband took a nap and that was my social time, also did the exercise time on treadmill and other things that are available on a ship. Good luck and enjoy the good weather, I am stuck up in Northern Michigan and it is snowing right now. God Bless, OZYS

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Hi @traveler17. The following is based only on my personal experiences as a caregiver. While I was a caregiver for my MIL with frontal temporal dementia it was valuable for me to remember I could not apply logic when speaking and dealing with her. A demented brain does not operate logically, so trying to insert logical explanations, such as ‘I am sorry honey, but that was not how I remember it’ or similar only further frustrated and agitated her. I would also caution you about something, which occurred with regularity with my MIL. Whenever she visited or went to someplace outside her home boundaries her agitation, fear, and aggravation all increased. Changes in milieu can be difficult for some folks with dementia. I just say this as a word of advance awareness for you in case it occurs on your cruise.

Peace and strength

REPLY
@colleenyoung

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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I had requested that but they are not available. Hope we are placed with understanding peoplep

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Hi traveler17:
Most people are understanding and since most are older anyway, I think you will find that most will see what is going on with your husband, we just
had a relative diagnosed and the signs are there and people will pick up on those signs. Please know that we do not judge you or your husband because
of health issues. Just relax and take it easy, god knows you need the change of pace which will be great for your morale! Be safe and enjoy your time
away, OZYS

Liked by Debby - @tavi

REPLY

Hi Colleen,

I’m joining the group because my wife and I are caretakers for her mother (my Mother-in-law). She has mid to late stage dementia and has lived with us since May of this year. We both work from home and have a caretaker with her during business hours.

Things have settled into a routine, but the usual stresses are there. Fortunately, she is almost always cheerful – like a happy toddler, but confused.

We’re doing Ok, but it’s always good to be part of a group like this one.

Thanks,
Ed

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