Owner of Aden Home Care and dealing with a loved one with dementia.
I am the owner of Aden Home Care and have been dealing with a loved one with dementia. I have been dealing with all of this for 7 years now. My great-aunt is pretty much the matriarch of the family. She's always been looked up to, revered, respected, and very much loved by the whole family. In fact, she is the reason why I got into the businesses. But having been dealing with this for 7 years now, I have come to the realization that you lose them twice. First, mentally, you get to watch them slowly slide down into the darkness of their own mind with small glimpses of hope that every once in awhile get to shine through, of the real them that they used to be. It is extremely heart breaking to watch all of this. Yeah the family members get to see and tell you how much they've declined. Which to their reply is "yeah I know". But for the most part I really don't think they realize how much or how hard it is to see and watch. I have ever so slowly watched her decline now for 7 years to the point where she barely recognizes me except for a few brief moments a week. This absolutely kills me inside at times when the weakness shows through. See to me, as the primary caregiver and POA, I feel I have to separate myself from it all to make sure that she is getting what she wants and needs rather than what I want or need. Like I know what she wants when that time comes and I know what needs to be done. Even though its definitely not what I want I know what needs to be done. Now, I'm also a firefighter and have been on calls where what the family wants and what the loved one wants are alot different sometimes. The loved one wants to have everyone follow the DNR or the "will" or the "MOST" form which you can get at any hospital and it goes into a little more detail, but the family wants them to stay around longer and for everything to be done in order for them to survive. I get it, but as MPOA/ POA and everything else her wishes are her wishes and they need to be followed. But doesn't make it any easier by any means. The other problem I have been facing with all of this is with what I call "the other side of the family". What I mean by this is when my great-aunt and uncle were still married or when he was still alive, he passed in 2008, she would always say that she always had the feeling that when my great-uncle passed, nobody would come and visit her any more. Which, sadly enough, is exactly what happened. My great-uncle passed in 2008 and "the other side of the family" stopped coming around yet accused me of hoarding her. Even though her number never changed, she lived in the same place for approx. 4 more years after his passing, and I even know they drove by which within a 5 mile radius of her house. But yet they never stopped. But accuse me of hoarding her. I get it, people are busy, I'm an extremely busy person myself. I'm a firefighter, own 2 businesses, run a 55 and older luncheon every 2 weeks (even though I'm not 55) and a high school football coach. But I never, ever, went without any long stretch of ever seeing or stopping by to see her. Long stretch to me being more than a week. Now please don't get me wrong, when all of this went down I was accused by "that side of the family" of hoarding her and trying to split the family into us and them. Uhhhhhhhhh no, they just never came around plain and simple. They were after one thing and that which is , the root of all evil. It constantly amazes me how people can do that. But in the end, I know what I'm supposed to do which is what"she" wants done