No one sees the "little" things that make me so sad
My husband was diagnosed with early onset three years ago at age 57. He is still able to do lots of things (garden, golf, church)...but as empty nesters, I am his sole caregiver.
And that means that I see things others don't. I am the one who has the same conversation three times during a meal. I am the one who has to tell him what he was looking for. I am the one who has to write it all down on a list so he knows what he wanted to do in the garden. I am the one who has to remind him what our pastor just said at church during the service..
And then you go in for a check up and his cognitive tests show he is the same as before. And you know he's not, because you are constantly repeating yourself and are constantly reminding and constantly on edge. And if you hear one more time "Hey, he's doing great!" you might just scream. I see that he is slipping, but only in what others would term "little ways.'
It's not that I don't want him to function out there, it's just that every time someone says that, I want to invite them to come live in my house and see how much he has slipped. His short term memory is at the amnesiac level - there is none.. and every time I have to repeat a conversation or remind him what he was doing it just takes a little piece of my heart and rips it off.
It hurts so much. But you have to stay positive with others and not be the downer and "that depressing wife" and be so happy that he's "doing great" when you know he's not.
I hate being the only one who sees all this firsthand.
Hurts a lot to lose them little by little.
Sending lots of love, light and positive energy your way, @Peward. - Warmly, Donna (team member)
I wanted to circle back and see how things are going for you. Scott (Team Member)
Hi @Elizawesmom, it is hard and heartbreaking to see the changes that others don't - or sometimes won't. It's okay to take some time for yourself so that you can continue taking such good care of your husband. Do you have a local support system?
Please check the resources below, they will help you build a support system local to you, where people do understand what your day to day is like.
Caregiver training and Resources - bit.ly/3HX5q8K
Caregivers Support Group - bit.ly/3z0EobY
Community resources (Alz.org) - bit.ly/38UrL7a
And we, of course, are always here for you. - Warmly, Donna (team member)Omg this is my life at 55 my husband is 59 and diagnosed 2 years ago. I know how you feel. I feel like I wrote this. I feel mad that we can't do what we should be able to at this point. Plus I'm a social worker. I work 50 hrs a week at times and its rough. I leave lists, notes, and call to check in often. Then come home to repeat and repeat. I feel the day wasted 🙃 😪 my heart breaks for him and myself. So I understand you.. hugs to you!!
Hugs right back to you....you really are living the same life as I am.... I stopped work to be home with him because I was doing the same thing you are: calling constantly and always on edge. Plus at one point he was forgetting to eat. Don't you feel as if we are way too young to be doing this????? xo
I am my own caregiver. I live alone and it drives me cucu when people tell me how great I am doing when I can see my decline. There will come a day when I will need a caregiver so I can empathize with you in what you are going thru. I also took care of my partner and my mother who had dementia so I can relate to you on that level as well.
I live by the serenity prayer. Good grant me the serenity to accept the things I cannot change. The courage to change the things I can and the wisdom to know the difference.
