I'm sorry, I have not posted in a very long time; I went back to my first introduction post and was disheartened to see the pages of introductions since then. I've been reading books about caregiving and Dr. Graboys' book to help support my dad but interacting on here and reading stories directly makes it hard to breathe sometimes so I've stayed away. It's shameful but I'm doing my best not to have my heart completely broken and to be happy with my life because I know that's what she would always want me to do. Plus I'm planning a wedding and working full time and trying to reconcile the start of my life with my soon-to-be husband with the decline of my mother's. We live far away and visit as much as possible and are trying to move closer but of course that decision lies with the Air Force so we'll see what happens.

My mom either forgot my birthday or she can no longer figure out how to call me. And I’m so sad and angry about it. Not for me, no, but for my mom who can’t communicate as I’m sure she’d want to. It’s awful, awful, awful. Dad called me the night before my birthday and texted me the next day. I texted him back and asked him if she had forgotten. He called me and gave her the phone and I talked to her for a little bit. She asked if I got her message but my phone never rang and she can’t text (not that she did much of that before). So I’m not sure if she was trying to cover up or if she can’t work a phone anymore. Either way it’s sucks. Another trademark of this hateful disease. Her short term memory isn’t obviously good at all and now she’s losing long term things. I’m 29 years old and for 28 years I talked to her, hugged her, something on my birthday. It only took one year for her to either lose my birthday or nearly 56ish years of using a telephone.

The thing is - am I supposed to be grateful I can still talk to her? Am I supposed to be grateful that our conversations follow no logical path and I can’t understand her half the time and most of the time she laughs instead of replying? Am I actually supposed to be happy for this in anticipation of the day where she no longer responds at all?

I know the answer is yes but I have too much anger in me right now to be able to yield to a solemn acceptance of this. Right now it just pisses me off.

I am never angry with my mom, she always seems happy to see me and talk to me, but how do you deal with your own anger at this disease? Going running or hugging my dog or fiance helps but I feel like there is always an underlying sense of injustice at what's happening to my mom and I don't know how to fix it. I don't know if I'll always feel angry about this. Even if it one day means that someone will need to hold the phone to my mom's ear I'll never stop calling to tell her that I love her, is that the best I can do? It doesn't ever seem like enough.

How is your father holding up? I guess my main concern would be for him. Caregiving for someone with LBD is very difficult and men, in particular, are reluctant to admit it and ask for help. Anger at the disease is normal but, obviously, it doesn't get us anywhere.

Jamie,

Sometimes just venting to someone who understands is the best thing you can do, just as you did in your most recent post. We on the forum understand exactly what you are dealing with. At least I have found this to be a big comfort, and I can honestly say that I don't think that I could have managed for the last year without this kind and compassionate group. LBD is a cruel disease, and you are very young to have your mother essentially taken from you, at least the mother that you have known for almost all of your life. I am very sorry for that.

And sadly, yes, I suggest that you try to be happy that you can talk with her at all, and that she can respond in some manner (and remember, she may understand more than she can express), because likely the day will come when she doesn't respond at all, and eventually she won't be there at all. It sounds kind of corny to suggest that you make the most of today, but that is the best we can do.

Julianne

Jamie,

Congratulations on your impending nuptials!

I know you've got a lot going on but can you see a counselor or therapist about the loss of your mother's love and attention, and acceptance that you are indeed doing all you can?

Robin

mockturtle, he's actually doing pretty well, amazingly. We vent to each other and I think that's been helpful for him. We talk about the things we'll need to do once this all gets worse and he has amassed a small collection of names and numbers of those he can reach out to for help when the time comes. Right now, he's just getting by as best he can.

He takes care of my mom, my 93 year old grandma, his business, everything to do with the house, and I don't know how he does it. His sense of humor has gotten somewhat darker since this all went down but he is optimistic that we'll all get through it. My mom is, for now, easy to care for and doesn't complain about anything ever. She seems fairly happy go lucky for the time being. She is always happy to see me and hugs me more now than she did before this disease. I sometimes wonder if she's afraid but I think mostly we miss each other and she can't communicate verbally as well anymore so a hug is even better. We just keep moving forward because there is no choice, it seems there never is in life.

I've been working on getting resources together so I can help him figure things out as time goes on but for now I'm just emotional support and a person for him to vent to. I like to think that helps him, at least a little.

Thanks, Robin! I'm excited about the wedding and it gives us all something positive to look forward to.

I did see a great therapist for awhile but that I stopped going several months before my mom's diagnosis and have since moved away. For now I think I'm mostly okay, if that makes sense. 95% of the time I accept that we're all doing our best, even me (a perfectionist streak is a terrible thing in this case!), but every once in awhile I think I must feel guilty because I live far away right now. Then again, my older brother lives 15 minutes away from them and I think he's afraid of visiting my parents often because he can't separate his strong emotions from the situation to see the bigger picture. He makes excuses that he's too busy and that he has his own family. It just frustrates me because I want to shake him and make him understand that we may not have a ton of quality time left. I'm just hoping that the Air Force throws some compassion our way and that my fiance gets stationed close to where they live. My dad is convinced that I wouldn't be able to help as much as I think I could but I would at least be able to try!

I do appreciate the support, it would probably do me some good to post here more often. At least I know you all understand; I was upset last night and trying to explain to my fiance how alone it feels because none of my friends can possibly understand. Not that I want them to!

Jamie, you are doing the best you can. No one can ask more. To be angry at this disease is perfectly normal and venting here is a good way to release some of that anger. Here we ALL get it. And here we have ALL been in your shoes. Sometimes the despair becomes overwhelming. And that perfectionist trait you wrote about....well that just makes things more difficult. A really good perfectionist has to win, solve, cross all tees, etc. And there is no winning this game or solving this problem or crossing the tees. There is no winning with Lewy. The end is already written. You can just make the journey more comfortable.

Best wishes on your wedding. Your Mother will live to see you married and happy. That is a good thing. Smiles, Nan

Jamie, I hope your father at least has a support group of some kind. It is SO typical of men, particularly, to tell everyone that 'everything's under control'. If I may show a slight sexual bias, that's the way guys are. More power to him for all he is doing and I wish you the best for your upcoming marriage. Let the rest go for now and just enjoy your celebration! Nothing you do will change the outcome one little bit. God bless!

Jamie - I know how things like a forgotten birthday can just bring out the frustration, despair, depression, anger, etc. in us. It is so difficult to try to deal with this disease, see our LOs going downhill, and when something like the missed birthday happens it triggers a lot of negative emotions. At least it did for me too. My dad forgot my 59th birthday. He forgot my son's 20th birthday a couple of months later. It made me very depressed and sad for him. He also laughed at inappropriate times (before we knew he had dementia) and I couldn't understand it. He would get almost hysterical when I'd tell him my friend and I were going kayaking, like it was the most ludicrous thing in the world.
If you aren't familiar with the stages of grief, I'd suggest you Google the phrase and read about the stages. Anger is one of the earlier stages, and we've all been there, done that. You do get to another place after the anger.
I'm glad you feel comfortable posting on this forum. We really do know what you are going through, although your parents and you are a lot younger than many of us on here.
I wish you all the best with your wedding plans. I'm sure you'd prefer to have your mom helping with the wedding, and you are probably grieving over that too. I know I would be if I were in your place right now.
When my dad first moved to the ALF he'd call me all day (and night) and after the 3rd or 4th call within a few hours it was so annoying much of the time. He was often angry, had no sense of time, expected me to drive either from my house (500 mi. away) or his house (40 mi. away) to pick up the tv remote, take him to the bathroom, change his diapers, etc. Then he got to the point where he couldn't dial the phone, then he couldn't hold the phone, then he didn't want to talk on the phone. So, whatever things your mom can do now, be grateful for them because they will most likely change, and not for the better.
Just do the best you can do every day to try to take care of yourself. Sacrificing your own health will not make your mom any better. It will just make YOU sick eventually. Sending a giant hug, Lynn

Jamie,
Sadly Anger is part of frustration with these type of illnesses, its sad but we too have losses with it !

I would try speaking with someone that can help you past this anger and hopefully into exceptance of it !

I do hope you can concentrate on your up-coming wedding plans, it might help with so much of the emotions!

I do wish you well and yes we all understand !

Jamie,
Fact is..there is not one blessed thing you can do to stop any of this. You will be angry. If you were not angry, there would be a problem. The only things I know is how I have dealt it.

It is unjust. I accept that and embrace the fact that Chris, myself and the whole family are victims.

I am angry. I accept that anger and use it to teach others about LBD, speaking out to educate all around me, the drs and the caregivers.

I mourn. I am supposed to mourn. This is a devestating loss for us all. I don't believe I will ever get over it. I don't think I am supposed to get over it. I think I am supposed to accept it. It is supposed to change me.

I miss my husband..everything about him has changed. I can be self-centered when I want to be, but it is short-lived due to what it must be like to be "in his head."

My husband is no longer in control. I am in control. He cannot give me a single gift or a card, or remember my birthday...or our wedding anniversary. He cannot remember he is married, he is not sure of my name...but I CAN. Today, I AM HIS MEMORY.

Acceptance is the key. I pray for all the LBD families on this list everyday. I see us all as fellow soldiers in a losing battle. We will not win, we know it...but we will stand together until the last man falls.

thank you, Debra. That was beautifully phrased, and so true.

Debra, what beautiful insight. Thank you.

I know I am angry…
my wife is angry…

if we can channel the anger…
I don't think we can skip it…
I don't think it is wise to suppress it…

the anger is a natural response that summons up a tremendous amount of energy that has to be spent with a target to consume it….

that energy has to go somewhere...

Paintball, maybe?

paintball?….as long as scooters are available…
there might be a business model here...