What's my identity tonight?

MarDel0917

I love my BF like no other. (45yo eoa) But I freaking HATE this disease. Normally I'm beautiful and he lo lo lo lo loves me (gotta love speech aphasia). But a few weeks ago when I was trying to get him settled for bed. I picked my battle as he was trying to remove the sheet and comforter from the bed i got up and came to the couch. Covered myself up and he came and tried yanking the pillow out from under me and that time I was a "bi**h". Tonight after making a lazy dinner (top Ramen and grilled cheese) I'm an "as*h*le". I dont take it personally but I truely whole heartedly (as I'm sure many others do) miss my love. I miss him rubbing my back before I go to sleep. I miss me just saying that my feet hurt and the next thing I know he has the bottle of lotion in his hand massaging my feet and legs. I miss his conversation and sitting and watching the shows we used to and him not getting up to help the people on TV or talk to them. I miss going grocery shopping or even to Marshalls and Ross and him not having to hug every person or greet them and me having to detour him. I drive myself crazy wondering why him? Why him who is 45 years young, why must he have this horrible disease. He made his mistakes and he did his time. Why??? Why anybody? WHY!!???!!!!! JUST FREAKING WHY???

We are all in this together 💜

LilySue

“WHY” is the great question with no answer, and with your BF at 45 years old, it would be remarkable if you DIDN’T ask why.

It’s been almost two years since my precious husband breathed his last after 11 years of total aphasia and worsening dementia. I thankfully came to the conclusion many years ago that life on this planet is random, so I was able to accept that good people are not necessarily rewarded, and really bad people can live in mansions and drive a Rolls Royce. Life is not fair, it’s random and unpredictable and the news is full of those stories every day. I am constantly amazed that my life has been as easy as it has been considering the millions of people living through war and famine and terrible crimes against mankind. But through my thankfulness I still sob thinking of the years my husband was declining and suffering with no hope for any kind of improvement. Just because I believe that life is random doesn’t mean I understand the harder questions of why, but it does mean I don’t feel singled out. Strokes and dementia occur every day because our bodies are fragile, some more than others, and things can go terribly wrong to the very best of us.

If I say I found peace in this, I certainly don’t mean I’m at all happy about it. I’ve screamed and cried, but knowing these things happen without regard to race, religion, social status, citizenship, etc. helps me accept, and I think that’s about the best we can do.

I am very sorry you’re experiencing this so early in life, it’s terribly unfair, but much of life is just that: UNFAIR. I was an educator for decades, and I remember one kindergarten teacher who would consistently tell her students, “You get what you get and you don’t throw a fit!” This is teaching our youngest students not to expect life to be fair, it never has been and never will be. But I’m sure we can agree that it’s easier talking about it than EXPERIENCING it! Life is HARD, and much harder for some than for others.

annie51

I think LilySue just said it all! We all ask why, knowing there are no answers. So sorry MarDel0917 that you must deal with this at such a young age. This is a great place to get things off your chest and realize you’re not alone.

BPS

Bad things happen to good people and we all ask why. Keep coming back here and expressing your feeling that we all have and ask questions. The people hear don't have all the answers but they care and are supportive and do have a lot of experience.

SDianeL

I read a book called “When Bad Things Happen to Good People by Rabbi Kushner when my sister in law was killed by a drunk driver and my brother permanently disabled. It helped me. Hugs.

Cindy9519

Making peace with the reality of this disease affecting your loved one is hard. I’m so sorry it has affected your family at such a young age.

Biggles

https://alzconnected.org/discussion/71556/whats-my-identity-tonight

I’ve just read your post I was in tears at the finish I agree with you why, why, why. I hate this disease and what it’s rob from us. I so love my DH who also has Aphasia so communication is getting harder and harder. This disease is always robbing us.

Biggles

Victoriaredux

I'm sorry you are having to watch your beloved BF go through this — have you made plans for when he needs 24/7 oversight and maybe placement if he has incontinence , wandering, aggression & they get to be too much for you to handle alone and keep your job and your safety ?