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Moderator

Meet fellow Caregivers - Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Aug 27, 2016

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?

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

macbeth | @macbeth | Sep 14, 2016
In reply to @macbeth "I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years..." + (show)
@macbeth

I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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@IndianaScott

Oh my gosh! That IS rough! No, you didn't deserve that, and yes, you'd think they would have appreciated being kept in the loop. Gosh - "family!". You may not see it, but they may find themselves feeling your pain some day, in some other situation, with someone they love. Not to wish it on anyone else. I'm sure we don't do that. But, life is about learning. Karma! In the mean time, as I have noted previously, I feel it, too, from family and friends - the lack of caring, lack of communication, lack of help, the disappearing act. I also feel that this has been given to me for a number of reasons - because I am strong enough, even if I don't always feel it, and to set a good example, as you did in caring for your wife, and as my mother did, in caring so well, and so long, for my father.

Right now, once again, I am not feeling a lot of love from my husband's doctors for either my husband or for me. I know I can be a rather tough old bird, so I try to handle them with kid gloves so they don't take any possible negative feelings toward me, out on him, or so they don't just want to get us out of their offices, which, as we grow older, is the overwhelming feeling I get from them. I am very aware of the fact that we are all going to "die". I am not asking them to try to prolong things. I will die, my husband will die, the doctors will die, in some order of which we are not aware. What I don't understand is the seeming lack of consideration for quality of life between this point and that. We just received test results that could warrant further testing and treatment for my husband; however the doctor, citing only one of my husband's many symptoms, stated that he was not concerned about these results. I will, nicely, point out the rest of his symptoms, and, hopefully, not be considered a pest for doing so, and see if he still thinks it is not worth further testing on my husband, and, WHY it is not worth it!

The other thing that irks me, is that the two studies, testing new medications, that I have tried to get my husband into, determined that his dementia is too advanced for their studies. I understand that they need to set parameters to determine the efficacy of the medications they are testing, but when a condition has no cure, and the treatments are few and quite temporary, why not try new treatments at all stages? Why not try them on several groups of patients at different stages? Wouldn't that give even more information? This is all so frustrating!

O. K. Many thanks for this site and for this opportunity to get things off my chest, and, maybe, receive information or suggestions from others.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 15, 2016
In reply to @macbeth "I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years..." + (show)
@macbeth

I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

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Thank you for the kind words, @hopeful33250. I had a couple of guiding principles, which helped me out. First, I pledged to myself I would not do anything to begin "World War III" with family while my wife was alive and second when attitudes got especially bad, I would reread some passage from Siddhartha. Just a line or two to try and re-center in my own universe.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 15, 2016
In reply to @macbeth "I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years..." + (show)
@macbeth

I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

Jump to this post

Good morning @macbeth. I hope your day is dawning with sun and perhaps even a moment of comfort.

Your note hit another chord with me. Doctors and their attitudes. WOW can they be a trying bunch. I often repeated one of my favorite quotes when dealing with them. I mean no disrespect but it was "You know the difference between God and a Doctor? God doesn't think he's a doctor." It helped me manage my emotions with them 🙂 I still believe many doctors are in over their heads with some patients, but simply will not acknowledge that nor worse, suggest alternative physicians to use.

Tuesday I began my personal journey with a new GP. I had refused to continue to see the GP my wife and I had been seeing for over 14 years during my wife's journey with her cancer and my journey with caregiving. It became evident to me this doctor actually had no interest in really understanding my wife and her needs and certainly didn't care to try and understand my situation as a full time, high demand caregiver. We stayed with her for far too long, but also we just did not have the energy to undertake the move to a new Doc until much later, during hospice. Even then she put up a fight! She constantly complained of the work load she had because of my wife's medication regimen. She acted as if her goal was to get my wife medication free and back into society rather than managing terminal, Stage IV brain cancer. It drove me nuts!

On the issue of allowing your husband into studies, I can add a small insight. I know it will not offer any help nor solace, but trials have to be tightly controlled or the outcomes can be suspect. Therefore, before they begin them the doctors must outline who will be in them, who will be control groups, disease stage, etc.. Then they must follow that established protocol to a 'T'. Funding, peer review, valid results, and much more factor in. Not fair I know.

Peace strength and thanks!

REPLY
Kathryn S Wilbur | @kwilbur | Sep 15, 2016

So true. We live with our bodies every day but see doctors periodically. I see now that being diagnosed is not a fixed "grade" like in school , managing our own bodies through forums where we learn through the experiences of others is the way to progress.

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nanax2 | @nanax2 | Sep 15, 2016
In reply to @colleenyoung "Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott..." + (show)
@colleenyoung

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

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I am the primary caregiver for my mom who has Alzheimer's and has been bedridden since January. Mom is 76 and before she was diagnosed had hardly been ill a day in her life. She is also the first in the family to have this awful disease (that we know of). Mom moved in with us almost 3 years ago and I would say that she is in the late middle/early late stage of the disease, though it certainly fluctuates. I hope to encourage and be encouraged through participation in this group.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 15, 2016
In reply to @colleenyoung "Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott..." + (show)
@colleenyoung

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

@nanax2 Welcome to Mayo Connect. You certainly have a big responsibility for your mom. The caregiver group is very active and supportive. I'm sure you will find encouragement for yourself and your family! Best wishes

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 15, 2016
In reply to @colleenyoung "Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott..." + (show)
@colleenyoung

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

Welcome @nanax2. You are certainly among people who understand, and are here to support you if only virtually.
Scott started a discussion forum here specifically for caregivers caring for someone with Alzheimer's or dementia. Will you also join us here: https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

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rmftucker | @rmftucker | Sep 15, 2016

I am the primary caretaker for my 86-year-old husband. We have been married 61 years. I plan to care for him at home as long as I am able with the help of Respite workers and our family. He was officially diagnosed with Alzheimer's Disease with Vascular dementia in late July although we had been going through testing, etc, since April when I decided we needed more information and help. I had suspected it a couple years ago, when he began irrational behavior and personality changes. He has a family history of late in life dementia (mother, grandmother, maternal aunt) so I was well aware of various symptoms.
He has been using the local VA clinic as his primary medical care for the past 12 years so we began with his yearly checkup and was connected with various specialists through them. He had gone from using a cane in April to needing a wheelchair by July. We did get excellent help from them, and after the diagnosis was determined, a social worker called in just a few days to ask if we needed hospital bed, wheelchair, etc and offered to help set up respite care, day care, etc. It took a while but we now have help two days a week in our home, as well as physical therapy sessions locally 2 days a week.
He is still able to go out to eat and visit with people although he does get very tired, but we go as much as we are able.
He has been on Aricept since July and I think it is helping, as his therapist said his leg strength was better this past week. His attention span has been so short that anything would distract him, and I think that is improving.
I've been researching this disease and am so thankful for My HealtheVet for Dr. reports, appointments, etc. so I can take my time and refer to the Dr's reports repeatedly to help me understand what I can expect and need to watch for.
I know this will be a journey we are in together, and we just enjoy as much daily as possible.

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 15, 2016
In reply to @colleenyoung "Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott..." + (show)
@colleenyoung

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

Hello and welcome @nanax2. Wonderful to e-meet you here. I am Scott and I was my wife's primary caregiver for 14 years while she battled brain cancer. I was also one of the support caregivers for my mother-in-law who suffered from fontal-temporal dementia.

I, too, hope you find encouragement here. I certainly have and I try my best to encourage as well. It is a nonjudgmental, sharing community and one that has helped me both as a caregiver and in my healing processes.

Yes, dementia is an awful disease and I send you all the peace, strength and courage I can.

The demands of caregiving won't decrease because you are here, but I hope it lessens the isolation and doubts that accompany caregiving as it has for me.

REPLY
macbeth | @macbeth | Sep 15, 2016
In reply to @macbeth "I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years..." + (show)
@macbeth

I am the caregiver for my husband, who was diagnosed with 'probably' vascular dementia four years ago, then with Alzheimer's, by a neurologist, then with vascular dementia by a memory clinic PA, then, 'maybe' Alzheimers by a different neurologist. I had to stop working two years ago, at the age of 59, because my husband could no longer be safely left at home alone. We have been together 24/7/365 since then. Looking back, I saw the signs at least two to four years before the original diagnosis, but thought it was due to a medication (statin) he was taking. He is not on any dementia-related drugs. With the average extended period of clarity being, on average, rather short-term, and the possible side effects being ravaging, I can't see them as being a good trade-off. Besides, it seems that, as he ages, if there are bad side effects to a drug, he will have one. If he has a stroke or begins to experience seizure activity due to a 'helpful' drug, it will only make matters worse. With no cure for this diagnosis, and very limited treatment options, temporary in nature, I have decided, at this point, to let nature take it's course while I do my best to protect him and help him through this. My greatest concern, at this time, is that he started having frequent, severe headaches several months ago, which have become a daily occurance, usually all day. The first neurologist said to cut out caffeine (he only has one cup of coffee a day, and otherwise drinks water), the headaches have only continued and become worse. The second physician tried verapamil, but his urine turned very dark - almost orange - so that was discontinued. The doctor then attacked it from the allergy/sinus perspective, with Claritin, but that didn't work, either. He was then referred, on my request, to a neurologist in that clinic system, who has had him on prednisone for a couple of weeks, with a return appointment to see the neurologist's PA this week. So far, that has not worked, either, and there are only two pills left. They will do a CT scan at his next appointment. They can't do an MRI, due to his pacemaker. His pacemaker hasn't paced in over a year. His heart has been working on its own. I would like the pacemaker removed so we can see what's going on in his head, but no one seems to think that is a good idea. And, by the way, I agree with those who have posted on this site, that many doctors show neither the experience, the respect, nor the empathy needed to deal with dementia patients or their caregivers.

Jump to this post

@indiana Scott
Man! You nailed it with "What's the difference between God and a doctor?". Right on the head! Thank you! I, too, understand staying with a dr. way too long because it is daunting to start all over again, and then, what if you end up with someone with the same attitude after all that anyway? Ugh!

I understand about the parameters for testing. My point was that they could do separate tests for different stages, instead of, seemingly, working only on early stages. But that's o.k. I'm just clarifying.

Thanks for your support on the doctor "thing". There really has often been an aire of arrogance, and even petulance, that seems to attempt to warn a person to "know your place", that both angers and disheartens me, and worries me that I really must keep "my place" in mind, just in case the doctor is snarky enough to neglect my husband just to show us, or me, who really has the power. It is very difficult to maintain patience and civility sometimes, but so necessary for the benefit of one's loved one. But, again, thank you. It's nice to know I'm not alone in this.

Strength and peace to you and all of the other caretakers, too.

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