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Relationships and Guilt
Posted: Sunday, December 25, 2016 12:32 PM
Joined: 12/25/2016
Posts: 21

Hello. I have been with my boyfriend for 4, almost 5, years. I absolutely love him.

Last summer, however, I made the decision to move to Virginia to be closer to my parents. My boyfriend would not be joining me as he was not out to his family and while living at home, was unsure what to tell them. This was all before my diagnosis.

He came out for Thanksgiving. It was awesome! He got to experience what it was like to be out to family here. He loved every bit of it. Two days before he left I learned that they did not think my memory loss was due to a brain injury and thus were looking into other things. My baby left me a bit depressed but chose to be optimistic.

Then, on December 16th I learned that I have dementia. I was hard to swallow, and even harder to share with Jorge. He was angry and hurt and scared and lost... He took nearly 24 hours to deal with the news but decided amidst tears that he did not want to lose me, nor did he want me to take this on alone. He decided that he will be moving here in 3 months to to be my care giver and my partner. So then, why do I feel so guilty? Why am I struggling so much?

He is reading a lot, and he seems to be aware of the many stages, but I feel like I am sentencing him to some type of punishment. Has anyone else felt this way? Am I the only one?

Please share if you have experienced this too.

Mimi S.
Posted: Sunday, December 25, 2016 5:14 PM
Joined: 11/29/2011
Posts: 7027

Hi again,

Hopefully you will get some responses here since there are others on the site. 

Adjusting, regardless of situational response, is different for each coupe and family.

We care.

Posted: Tuesday, December 27, 2016 8:19 PM
Joined: 7/6/2014
Posts: 1350

Guilt is such an inescapable part of this whole process, no matter if you are a caregiver or a person with early onset of dementia. We all suffer from it, and there are no easy answers.  There are so many things to overcome and deal with, it makes your brain feel like it will explode. 

Your Partner is on the right path to educate himself about what he can expect and what may happen to the one he loves. He may or may not be able to cope with it all, what is extrodinary is the fact that he loves you and is willing to try. 

Hugs, Cynthia (Dahlke)

Posted: Friday, December 30, 2016 6:27 AM
Joined: 12/25/2016
Posts: 21

Thank you Mimi and Dahlke for responding. I honestly had hoped for my shared experiences or affirmations as I see that I have over 100 views. Good or bad, I do want to hear what others have to say. Thanks.

~ John-Richard ~ 

Posted: Friday, December 30, 2016 1:48 PM
Joined: 7/24/2015
Posts: 3020

I am so glad you family embraced you and him.  It nice when you scare do something and brave it be shot down for! 

There a film out...or coming out, making all the film fest circuits...Alzheimer's A Love Story, by a friend mine, Michael (no on this forum), and his partner Gregory who passed away last Christmas Alzheimer's.  I can no wait until I can see might be out now (I just a bit confused all this stuff internet these days and how figure that out).

Michael one my best caregiver friends when I was active in talk about how bridge the worlds caregivers and us dementia....try make a better care model for us, that work both us. 


Posted: Saturday, December 31, 2016 7:01 AM
Joined: 12/25/2016
Posts: 21

Thank you so much again. I will share this with my BF.

~ John-Richard ~

Posted: Monday, January 23, 2017 3:55 PM
Joined: 11/18/2016
Posts: 451

Hi JR, nice to see you again! How did things go with the doctor? Relationships, of any kind are  difficult, and the added bonus of dementia makes life even more complicated. My wife is a geriatric nurse and she still has a hard time with this. She goes to the extreme, not talking about it at all, and that causes all sorts of confusion and emotion in me. I felt that same type of guilt too- in fact, I even told her that "when it's time"- whatever that means, I want to just go away and live in  a nursing home. I went so far as to say that I wanted to just disappear from everyone so they wouldn't have to deal with this. She did not sign up for this as your BF didn't either, but they are grown adults, they can make their own decisions, no one is forcing them to stay with us. My wife said that it was not fair  for me to decide if she wants to take care of me- that I was taking away that decision from her. When she put it the other way around, that if the same were happening to her, what would I do, the answer was obvious.  There's no doubt that  if she were the one with dementia, I would take care of her, hands down.

Soooo, it's a tough road we're on- downright sucks at times and adds a whole array of emotions to our package- but no doubt, JR, he loves you and he does not see this as a punishment but just wants to be with you...end of story- however you are. My wife says she'll take me whichever way I come and I believe her because I would do the same.

In sickness and in health...

Good luck, JR

Posted: Friday, October 13, 2017 11:55 PM
Joined: 10/13/2017
Posts: 4

JRPagan wrote:

Thank you so much again. I will share this with my BF.

~ John-Richard ~

You are so lucky you got someone who loves you unconditionally.

Jo C.
Posted: Saturday, October 14, 2017 6:27 AM
Joined: 12/9/2011
Posts: 12882

Hello gloomysurprised and a very warm welcome to you.   This particular thread is from December of last year, but the dynamics certainly are similar to many others traveling on this journey.

I noticed by your Profile that you are a friend of someone with dementia; I hope that you will find much information and support.

This particular Forum is not as active as others, so if you wish to ask for input and have questions about various topics, or just want to share or vent, you are absolutely welcome to also post on the Caregiver's or Spousal/Partner Forums where there is more activity.   Many of us post on several Forums; everyone is welcomed with open arms no matter where they choose to post.

I also want to give you the contact number for the Alzheimer's Assn. Helpline at (800) 272-3900.   There are no fees for their services.   If you call, ask to speak to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and various dynamics as it relates to the challenges of this disease.   They have much information, educational material, resource referral information and best of all; they are marvelously supportive and if one just needs to talk or vent, it is a good place to go.

Please feel free to post as often as you wish and anywhere you wish; we are all here in support of one another and that now includes you too.