Support group

Welcome SpiralStylz. Would it help you to understand about anosognosia? This means that when your DH (dear husband) ignores or brushes off his failings, it is because he truly doesn't see an issue. This is not denial, but a characteristic of dementia. There is no way to overcome anosognosia. Even if he will admit to having some memory difficulties, he will not comprehend the totality of the meaning of having dementia. You will have to learn new ways of communicating with him. The members will show you work-arounds that they use. Please keep posting and members will help you.

Iris

It might help to know that each person with dementia is different. Your loved one might never exhibit some of the symptoms that another person with dementia does. Being here helps you prepare in case these behaviors come up on your situation.
As to your family and friends, they could be in denial of the situation. Or they just don’t understand dementia. People don’t realize that it’s more than memory loss until they are exposed to it on a very frequent basis.

I think we can all relate to how you feel. When I first came to this site after my HWD (husband with dementia) was newly diagnosed I was absolutely horrified and very depressed. I didn't return for at least six months. Now, after several years, I realize that he really does have an incurable disease and that he will have some of the symptoms that others have, but not all, as everyone is different. But…when he does display something new and unexpected, I can always find someone else who has already experienced it who has some good tips and kind words to help me cope. Good luck to you…come back when you are ready…

Dear Spirial, It sounds like you are feeling pretty much like I felt when my DH was first diagnosed. DH seemed so normal to everyone else. I felt helpless, I grieved, lost and alone. Gradually, those feelings gave way to just doing the best that I could. Everyone will tell you to get your legal work in place…POA, Medical POA , read The 36 Hour Day, read everything you can so that you can be prepared. You can get through this. Try to love him for who he has been, for the years that you have had together, for all the good things about him. He will change, you can be his anchor. To be a caretaker for someone with dementia is to be self-sacrificing. It is very important that you find a way to do some things that you enjoy doing…that is to say, take care of yourself, mentally and physically. Hang in there. This is great community where you can be honest and where you can find emotional support. See a therapist if you need to.

Spiralstylz I was in the same frame of mind in the beginning. Scared, lost, frightened, a bit of disbelief, beyond overwhelmed, hopeless and clueless. I wanted to fix him, believing he wouldn't progress. I was scared for our new normal, what our future would hold, worried how I would survive, how to pay for memory care. ..just all of it! It scared me so much, especially those who are farther along on this journey, I did not return to the site fir a while. I did return and just read posts until I felt comfortable to ask about things I didn't know, feared, etc. Those who are dealing with this understand your emotions. This place is the best to find info the drs don't tell you. You can vent, discuss anything, no judgment, just support, understanding and knowledge. It is a long journey for our loved ones and also ourselves. It took me years to get to acceptance, a better place to be. You will in time accept this is reality. We don't like it, wish it wasn't so, wish we could change the outcome or the timeline but we can't. All of us here are in the same boat, different rate or journey, slightly different course. We are here to support each other. We understand what you are going through! Reach out.

One thing about this forum is people will not lie to you here. This disease is just as ugly and horrible as you read about, and nobody here is going to tell you how it helps you love your spouse more or that it's a blessing. The sooner you understand that it really is hopeless, there is no treatment that's going to help, and live in its reality, the better off you'll be.

We have people come here who swear they will never leave, swear they married for "better or worse" and vow to take care of their spouse until their last breath. Now, that's the lie. Those people are fooling themselves and have a lack of understanding of just how exhausting and hopeless being a caregiver for someone with one of the dementias is.

I tell myself the things I need to hear to make it through the day. Sometimes the things I tell myself at 10am are in contradiction with the things I tell myself at 4pm.

Hello and welcome to the group no one ever wants to join. I was scared as all hell reading this forum at first, even though I had supported my DW in caring for both of her parents with dementia. Being on the front, front line is no joke.

You mention having nothing to hold onto — I fight this feeling daily and have finally, after 7 years on this 24/7 caregiver road, realized that I am worth holding onto. I refuse to go down myself as my DW steps further into Stage 6. I matter too and I hold tight to that. I get respite for myself as often as I can to keep me going, though who I am has changed so much through this. The loving marriage we had for 21 years, matters. I remember it, even as I've lost it in the most heartbreaking way every minute of every day. I hold onto how important it is for me to know I nurtured and cared for the love of my life, even as difficult as it is. I really had to seek those things out for myself or I would have lost my mind to the meanness of this disease and the heartbreak it brings.

I'm way further down this road than you are and never thought I'd make it this far. I never thought I'd discover a well of patience and grace I didn't know I had or that I could find a way to keep me alive while keeping my DW safe, loved and protected. We are care warriors, Spiral, and you are one now too. Hang in there and know we support and care without judgement. Vent, cry, rage here. We understand.