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Should have known better
Andrew60
Posted: Friday, August 31, 2018 9:38 PM
Joined: 7/17/2017
Posts: 342


I need to put a reminder on my IPAD to never, ever visit the caregivers section again. Some of the thoughts, and topics I read  sent my stress through the roof. And yes, I understand the caregivers need a place to vent, and feed off each others ideas, but dang. I will hopefully soon forget most of what I just read.

For the record, I cant possibly imagine how hard it is to be a caregiver, and the personal sacrifices they make over the many years they have spent caring for their loved one. I cant think of a harder challenge that anyone could ever face. I just cant read about it anymore from their perspective. My knowledge will continue to primarily come from those with cognitive impairments.

I will try not to make that mistake again. I really wish there were separate forums.


dolor
Posted: Friday, August 31, 2018 9:57 PM
Joined: 11/9/2017
Posts: 308


It is the land of the broken hearted.
jfkoc
Posted: Sunday, September 2, 2018 9:43 AM
Joined: 12/4/2011
Posts: 17560


Andrew....there were some real cringe worthy posts recently. They were hard for me to read. They left me with a feeling of great sadness. Sadness for how they view their lives as well as how they view the life of their loved one.

Please know  that the overwhelming majority of us who post here do not harbor the feelings that were expressed. Responses were written and reports were made.

 


MissHer
Posted: Sunday, September 2, 2018 10:27 AM
Joined: 11/13/2014
Posts: 2186


Heartbroken, deep sorrow, and helplessness.
Andrew60
Posted: Sunday, September 2, 2018 10:33 AM
Joined: 7/17/2017
Posts: 342


Thanks for the supportive comments.

What really hits home is I dont want my wife to have to go through what many of you are currently living through. I dont worry as much about myself, but with her MS and daily battles with extreme fatigue, Im afraid the physical toll of caregiving will make her condition far worse. We are both strong in faith, and our prayers are for her to be given more endurance if needed.


llee08032
Posted: Sunday, September 2, 2018 10:45 AM
Joined: 5/20/2014
Posts: 4406


Andrew, It sounds like a lesson well learned. Some of us including myself have made the same mistake. I don't want to be a burden to anyone nor do I want to break anyone's heart (through no fault of my own). I try to find comfort in the fact that no one except the PWD themselves knows how it feels on the inside to live with dementia. I choose to believe that dementia looks much worse on the outside then it feels on the inside.
jfkoc
Posted: Sunday, September 2, 2018 11:51 AM
Joined: 12/4/2011
Posts: 17560


I guess we were not talking about the same thing, Andrew.

There are many things that will make this journey that you take with your wife easier. I would say that the most important is education.

So often I read here and come away dismayed at what I perceive as a lack of preparedness for the future. Specifically preparedness of the person who is going to take on more and more responsibility and is really not aware of what knowledge is available. I have hesitated to post anything about this but seems today is the day.

I think now is the time to learn. Learn about the disease, legal matters. financial matters, medical treatment, non-medical treatment (there are online caregivers courses). Learn about facilities, resources that will be available. Too often "caregivers" are in denial.

Learning on a need to know basis is not the way to go. Understanding of what is happening and how to address this disease has got to be a better route. 

And Andrew, while this trip never seems to be one of smooth sailing, many of us have been able to make it pretty well albeit with times of frustration, some anger and yes, sadness.

It is an intimate journey...a challenging one but one made easier for some with faith and for all with knowledge.

 


Andrew60
Posted: Sunday, September 2, 2018 2:14 PM
Joined: 7/17/2017
Posts: 342


JFKOC - No, we were talking about the same thing, I just changed my comments in another direction. The comments I read on the caregivers section seemed really callous and mean spirited. Of course thats easy for me to say without having walked in their shoes for many days, months, or years.

My wife has been educating herself since I was first diagnossed with MCI 2 years ago. She has read hundreds of posts on this forum, plus belongs to a FB group of caregivers, watches Teepa Snow, purchased AZ books such as the 36 hour day, and has consulted with an attorney, and with the Veterans Administration for info on what they will help with.

Neither of us will walk this journey without being as prepared as possible.


jfkoc
Posted: Sunday, September 2, 2018 3:30 PM
Joined: 12/4/2011
Posts: 17560


Much relieved with that news...........maybe I have been worrying about nothing.
Andrew60
Posted: Monday, September 3, 2018 11:03 AM
Joined: 7/17/2017
Posts: 342


JFKOC - Thanks for the worrying part. I always read your posts as you have been there, done that, and now share that which you have learned.

Thanks llee for your comments, as I see we feel the same way.


Iris L.
Posted: Wednesday, September 5, 2018 5:39 PM
Joined: 12/15/2011
Posts: 16199


Hi, Andrew.  The caregivers indeed do have a different perspective from those of us who post on this board.  I have had my own share of cringe-worthy moments and times that I vanished from the boards in mental anguish.  But I came back.  The wisdom on these boards is just too great not to be here.  But I have to filter what I read.  I learned from another program to "take what I like and leave the rest."


I don't have a natural care partner, so I have had to learn what to do by reading from other members so that I can take care of myself.  They do have a lot of great advice.  We have to become like Scouts and be prepared.  A lot will be happening, and trying to get things done after a crisis is not a good way to handle things.    Unlike for other disease processes, planning for a life with dementia takes detailed long term planning.  Planning is not what we do best, due to impaired executive functions.  But I'm doing this, step by step.


Iris L.

 


Andrew60
Posted: Wednesday, September 5, 2018 6:08 PM
Joined: 7/17/2017
Posts: 342


Thanks for the comments Iris. You indeed are brave for going it alone.

Yes, there is a lot of wisdom on the caregivers board, and many times when I conduct a search for a quetion I have, it took me to their section for answers.

For me, self control is not always a given, and I read another thread on their site today. I appreciate the need for them to post unfiltered, and to air whatever issues they have while remaining guilt free. Some of the topics are areas I dont want to think about, such as “do you still love the PWD”. Some good comments, and some comments are cringeworthy. But, I will shake off what I read, and concentrate on the here and now, and focus on the love my wife and I have for each other.


jfkoc
Posted: Thursday, September 6, 2018 9:28 AM
Joined: 12/4/2011
Posts: 17560


If you have a question of caregivers I hope you will  go ahead and ask it either here or on a caregivers forum instead of having to search for it
Andrew60
Posted: Thursday, September 6, 2018 12:23 PM
Joined: 7/17/2017
Posts: 342


jfkoc wrote:
If you have a question of caregivers I hope you will  go ahead and ask it either here or on a caregivers forum instead of having to search for it

 

I have posed some questions here and recieved many great answers. Other times, I like to research various topics, and thats when this sites search engine will take me to all the different sections.
 
On a side note - On the thread I referenced on my previous post, I did see your positive comment, but that caused one person to somewhat attack you. Fun times for all..lol


jfkoc
Posted: Thursday, September 6, 2018 3:05 PM
Joined: 12/4/2011
Posts: 17560


My husband always reminded me that when being attacked to consider the source. Pretty good advice.
Iris L.
Posted: Thursday, September 6, 2018 4:41 PM
Joined: 12/15/2011
Posts: 16199


What's true for others does not have to be true for us.  That's why I call us Dementia Pioneers.  We are the first generation of patients who are making our own pathways and making our own decisions.  We can't control the outcome, and we can't control much of what happens to us.  But there are some things that we can control.  It is up to us to figure out what is important to us, and to focus on that.  For those who are married, focusing on their vows and relationship can be a blessing.  For those of us who are single, finding strength in our independence can be a blessing.  This is what I am focusing on, because I have always been independent.  I want independence to be my legacy.  


I learn from other members, what to do and what not to do.  I also learn the possible pitfalls.  One of my first and biggest lessons that I learned is that it is common, and actually, inevitable, that your friends and family will abandon you.  This is the reality of living with dementia.  We can't change that.  But we can learn to deal with it with whatever spiritual and psychological foundations we have developed throughout our lives.  


Abandonment in its various facets is a common theme on these boards.  Abandonment is painful.  For the most part, there are few answers.  We have to figure this our for ourselves.  Even on the Caregiver board, it is a common topic, although presented in different ways.  


My first few years on this board were spent bemoaning my abandonment by my friends, and how miserable I felt.  It took a long, long time before I was able to come to terms with this desperate feeling.  But I have.  Part of how I cope is that I limit what I disclose to others about myself.  I don't disclose anything about dementia or significant memory loss.  I have learned that other people cannot handle dementia, and that I cannot handle their not handling it.  


It's not a good feeling to have to hide such a major part of my life, but so be it.  This is what I have to do.  This is why I have to learn how to manage on my own as much as I can, because I know I can't rely on the people I know.  This is also why the members of these message boards are so important to me, because I value their wisdom and support.  I know they all know what they are talking about from their own experience.  If their experience is raw, I want to know, because I want to be prepared.  


So although I cringe at times, I want all members to be as open and as authentic as they feel comfortable with, because their experience can help all of us.  This is the only place to learn what we need to know.  The professionals can't help us in the day-to-day living with dementia.


Iris L.