I don’t know day to day

Bhopper

Some days I maintain hope things will stabilize and we will be able to continue our unsettled but no small life. And then the next day I feel as if I will barely survive the day the constant need of reassurance or trying to communicate with what equates to an eight-year-old I even forget myself that my discussions with her passed the first 4 to 6 words become level and I can see it in her eyes but then there still those moments in time where things are somewhat clear it’s fleeting and begins to be less every week I try to tell myself to hold on and then the day comes that I know it’s more than I will be able to handle. It’s an awful thing whether someone is young like my wife 61 or 81 it makes no difference to watch your loved one disappear a piece at a time and the stress it puts on you feeling like you have to be Superman or super woman to keep things rolling my wife’s biggest fear in life was Alzheimer’s due to the fact of losing her dad 20 years ago to the same ugly disease . I hate this and I hate What has happened to her and over the last five yearsI hate this and I hate what is done to her and over the last five years I have grieved the relationship we had to add the happiness and feel so cheated of the time we were supposed to get together after all the hard work we put in together. I realize it seems like a pity party when you all are going through the same thing but sometimes I feel like it would be easier if I was the one to be put in a facility. And run and hide from the reality of what is still to come I fear I have made a mistake by keeping several of the diagnosis from her when she was more aware I have tried to explain her illness without using the term of Alzheimer’s as it would still break her heart. Just been a really abnormally crappy day

CStrope

BHopper don't feel bad about voicing your feelings, we all feel that same way at times.  I agree....I'm 58 and I never imagined this was where my DH and I would be at this point in our lives.  We both worked so hard (I still am), had so many ideas about what we'd do in our retirement years, and now feel like we've been robbed.

ButterflyWings

Same. 

No real words of comfort or wisdom right now, though my heart goes out to you. Especially because I know EXACTLY how you feel. I'm thinking right now of the advice that says, when you get to the end of your rope...tie a knot and hold on. That's where I am these days.

Ed1937

This is a terrible disease, and nobody should feel bad for expressing their feelings, no matter how long their post is. People here "Get it".

Bhopper wrote: I fear I have made a mistake by keeping several of the diagnosis from her when she was more aware 

This is only my opinion, but I don't think you've made a mistake at all. My wife never heard the diagnosis when it was read, but I did, and I knew what it meant because I was a member of this forum for a few months before it was diagnosed. For the last 3 years the diagnosis has been kept from her by our family and friends. She still does not know, and I hope she never finds out the truth about what's happening to her.

White Crane

Caring for someone with Alzheimer's day in and day out is wearing and we all feel worn out by the end of the day.  Some days are discouraging but know we are all here with you.  We are all in this boat together.  I know how hard it is; I'm right there with you.  Like Butterfly Wings said, when we get to the end of our rope, we tie a know and hang on.  Hang in.  My heart is hugging you.

karwiy

Same on this end. This forum has been a godsend for support and information. There's no way to put positive spin on this disease. Remember to take care of yourself and celebrate  the little wins. 

LadyTexan

Hello bhopper.

I can relate so easily to what you wrote. Thank you for sharing your heartfelt words. I am so sorry for what you and all the other care giver heroes here go through every day.

The dementia journey is so very, very hard. I hate this disease. DH knows he has Alzheimer's disease. The road to diagnosis (dx) was:

• long (to rule out everything else) and 
• painful (Lumbar puncture) and 
• expensive (for example a PET scan not covered by insurance). 

In our experience, it was a relief for both of us to know that a specific disease was causing the decline in DH's abilities. But I can certainly understand the preference for not sharing the Alzheimer's dx with a loved one. An Alzheimer's dx is devastating in every way. 

In the beginning, I knew so little about Alz. Then I learned it was terminal. I began to understand that it wasn't just losing the keys or the cell phone. When I understood more about the disease I was hit with a severe depression about the hopelessness of what we are facing. Then I learned from the caregiver heroes here that yep it sucks, but there will be joyful moments during this hellish journey. What keeps me going is looking forward to the next joyful moment and being by my DH's side as he walks this awful path. Knowing that others are trudging this hellish journey allows me to feel less alone, although I am sincerely sorry that any of us is in this horrific situation.

Again, thank you for sharing and putting into words what I often think and feel.

KatieKat1

Bhopper... It is heartbreaking and stressful and we often  have felt and feel as you do. This is a great forum with so many kind words from others and a place we can share our feelings. My  DH has had this dreaded disease for several years and he has no reasoning or awareness.  He also has Primary Progressive Aphasia... He cannot form words and that came on in the first year of this disease.  I don't even know what he understands when I speak to him.  Some Alzheimer patients have similar issues, and others have different ones.. like my husband with PAA.  His dad had Picks Disease and his brother had dementia and Parkinson's... So we know it may be hereditary.

I know how you feel since I have experienced sadness, stress, anxiety with what this disease has done to my DH and myself.

Please know we are all in this together and can share our feelings, ask questions, and even share those difficult days that we experience as caregivers.