Today is my husband, Rich's 64th birthday. We've been on this journey for 6 years since dx (probably 2 or 3 before that) and over the past 12 months he's gone through so much and has lost so much. Unlike last year, this year he didn't know it was his birthday, much less how old he is. The bouquet of balloons which he always enjoys were the enemy this year...to be punched, beat and destroyed (popped).
A year ago he could speak clearly, walk 2 miles a day with the aide, had only very occasional incidents of urinary incontinence (never bowel incontinence), could answer questions or respond to statements appropriately. He was quite functional given he was in mid to late stage 6. Now he is doubly incontinent, cannot speak clearly and struggles with words even though he tries to participate in conversations, His ability to walk has been compromised by the broken knee cap, but he can still walk, but doesn't get enough exercise he needs (IMHO).
Today he struggled to sing "Happy Birthday", never fully recognized it was "his" day and that we were celebrating him. Intellectually I know this is the journey we're on and believe me I am grateful he's at home with me, but there's no denying that this year's birthday is markedly different from last years. As each and everyone of you know, this decline is so difficult to witness. As another person posted in a different thread "I still love him, but it's a heartbroken love." How very true.
Today is my DH birthday. We have been on this journey for at at least 14 years. He has been in LTC for a year, been the hospital last week for 4 days last week with pneumonia. We now have hospice, he has very lucid moments. Today was very tired, yet when alone we think he got out of bed. Yesterday, after being with him for over 6 hours they called me within an hour to say he was on the floor. This part is T0UGH.
LFL, I decided a couple of years ago that we would not celebrate any holidays with all family there. Anything out of his normal routine agitates him. The real pain for me was seeing Our DD heartbroken and crying because her dad would not hold a wrapped gift and had no clue about opening it. I decided we were not helping him but only punishing ourselves. We now visit separately and take a needed article of clothing and hang it in his closet or take a favorite dessert and feed it to him. We feel like we did something for him and he is not agitated and overwhelmed by too many strangers (family) at once. Another heartbreak for us and no clue for them. So sad.
In your time zone, Rich's birthday must have been yesterday. What a poignant and heartfelt message you posted. It makes me realize that common words like "congratulations" or "sympathy" don't really apply here. "Bittersweet", or as you said, "brokenhearted" are the closest I can come.
Around this time of year, probably within a week or two of today's date, my husband's research neurologist showed me the last MRI, a Tesla? She pointed out what it demonstrated, and I know when it comes to FTD, you know what I knew. My husband sat there, dressed in a suit (because to him all appointments were business), showing no interest.
She then said that the previous night, she had watched the film "Philadelphia"; it made her think of my husband and brought her to tears. I can't tell you what I did when we got home except to say it was an explosion of grief.
LFL, my meltdown on another topic here was because of my grief, it was not because of you. I share in the other posters opinions of you.
I had just found out that my husband's father was dx with AD. The family who cursed me and said I did not know what I was talking about because "there are no brain problems in our family" (their words), now think I might know one thing or another.
On top of that I have a physical injury for which the rx is rest-like for weeks.
I tried to rescue the email address where we once communicated and it is now null. I would like to write to you: the address I have is : your first name_your last name@your domain.com.
I will try to send something to you and understand if you don't want to accept it.
In the meantime, my thoughts and wishes are with you, as well as my respect and admiration.
Now, I must send this before I panic and delete- which I have done on this forum.
Thanks Charlotte, AliM and Abby*...your support always means the world to me, and as you can tell by my post, it is very much needed right now. Yes Abby*, bittersweet is a perfect word. It goes without saying that we are all brokenhearted, whether we're just beginning the journey, already on it for some time, at the end or after our caregiving has ended. No one who is a caregiver for a spouse with AD or other dementia remains who they were "before". The disease destroys your spouse, you, your marriage and your family; there's no escaping that. But each of us must, like a phoenix, rise from the ashes and be reborn if we are to survive. With the hope that the "new" us will be better because we have faced the enemy and survived such a horrible fate.
maryd, happy belated birthday to your husband as well. I am so sorry that yesterday was difficult for you both. (((HUGS)))
Abby*, yes that's still my email and I will always welcome hearing from you.
LFL and everyone else. we know well the grief and sadness that comes with the unstoppable demise our spouses are going thru. here too we have gone thru birthdays, anniversaries, and everything that used bring happiness and importance to our lives. my DH has also shown significant losses now. hes been late end stage 7E! for a couple years now. its just incredible how he seems to endure. many times we think they are on the last legs then rebound. like you all I want to keep him with me as long as possible while hes in no pain or duress. that's my line in the sand. every other line I have tried to oversee even if I thought I couldn't as have many of you. there is no denying when we witness the loss, we who see or live with them on a daily basis, know them so well as if they are part of ourselves. I guess the only thing we can do is try to be grateful and celebrate the added time we have with them. we all know its the one thing that later we will cherish and save in that special memory bank. so much to store for future retrievals. hugs to everyone, this is some of the hardest times. no one else understands the pain. divvi
LFL my heart goes out to you. I read your posting. It is so sad that what should be a happy occasion makes one feel so sad and helpless. I hate this disease and what it does to people. I wish there were a magic wand that could be waved even if it were just for your hubby's birthday, to make his, the special day it should be. Thinking of you.