Hello to all. Am beginning my seventh year of caregiving to my wife. (ALZ) Just wanted to get something out and felt this might be a good topic for us to vent:
I'm short, irritable, burdened, aggrivated, remorseful, resentful, ashamed, and so terribly lonely. I know full well that these adjectives have not and will not always describe the peron I am. I'm hopeful that one sad day, these descriptors will fall away and that I will return to that rather normal, generally happy and hopeful person I once was and yet I fear there will be new adjectives, perhaps relieved or broken, who can know? I truly realize this journey is not about me but rather my poor BJ who is slowly drifting away. I write this because not a day goes by where I'm not in conflict. Once I was balanced and capable and steady. For all the reasons we know this is not the case now and when I'm reacting poorly with daily events or even poorly with people, I say silently, "I'm not myself." It's my way of just trying to ease up a bit for I'm suffering somewhat quietly and have troubles I never once had.
I enjoy reading all of you out there and your posts. Hope some will chime in and share.
I cannot speak for anyone else but myself - I totally agree with you. I am not myself, nor have I been for at least 5 years. A couple of years ago, I wrote a blog about it - will look it up later and give you the link. A few years ago, I received an e-mail from a previous colleague of mine. In it, he congratulated me on the website and said that he always remembered me as full of laughter, joy, devotion to my husband, and love of my work. Who the heck was he talking about? Now, everyone who sees me says that I look tired, worn out, in need of a rest, and one person told me how nice it was to see me smile when she said something amusing. She said I never smile.
So, yes, this is what being an Alzheimer Spouse does to us. When it is over, I don't think we will return to who we were.We will be different. Our experience will have changed us into stronger, more capable men and women, but I could not continue this caregiving gig if I did not believe that we will also know joy and laughter again.
In the meantime, we need to find some respite that will allow us to breathe and refresh ourselves, even if for only a few hours a week.
This thread couldn't come at a better time for me. I spent the whole morning feeling all the things you describe. Here I am married to a husband I love and I am lonely. Although my dh is in perhaps late stage 5 or early 6, I have no real companionship anymore. We can't discuss a thing. I hold all our memories. DH doesn't know the children, our past lives. All we share is the home we live in. I am not to the point of being physically worn out yet but my personality has disappeared. I seem to be a shell of my former self. I guess you could call all us caregivers "The Real Transformers."
Although I am only going in to the second year of caregiving, this "I am not the same" has hit me already.
I did just what you did Soolow, only, I did not say it silent like you.
When the visitors arrived next door, a few weeks ago, I told them, "I am not the same person, right now, and I am just letting you know"
They tried to joke me out of it, and to disagree, but, I said well that is the facts. You will not see the same Patty, and will have to just do your best to try to understand, until or if any of this changes.
As you can tell if you read my other posts, they have NOT been supportive. That does not change the fact of all those things you said above, yes all of them, including a surprising loneliness, one I thought I would never know.
This place of refuge satisfies that loneliness quite a bit.
Shirley, it sounds like your DH is around the same stage as mine. We can’t discuss anything either. I’m sure you are like me & you almost start to tell him something that happened, but catch yourself because you know he won’t even understand what you are talking about. My DH doesn’t know his children anymore either & he doesn’t remember our past life. I’m not physically worn out yet either, but a lot of the time I feel weary & lonely. I don’t think friends, relatives or children know how lonely we get. Coco, thank you for the warm thoughts!
i am at the point after 12yrs+ of handson caregiving that i just keep on talking to DH like i would otherwise. whether he understands or not,-and its mainly not in stage 7C-D. it gives me peace to talk even if its to myself. some sort of normalcy within the sanity, if that makes sense. dont give up talking to them. just dont expect conversation or understanding back and its good therapy. like a monologue to yourself. i am quite surprised at times, i do get an unexpected reply even if its a yes or a smile. i like to think hes understanding even if i know the reality. not denial so to speak as there is so much we dont know about how their brain functions that it may very well be possible they are comprehending but unable to respond in logic. being physically worn out -well the only way to not get there is having a bit of respite however possible. even if its reading a book or a hot bath alone and away from AD for 30min. like coco, i find alot of satisfaction in overcoming the lonliness by visiting this site and reading your posts. its very comforting to know within our sad state we are not alone. in a way i am glad i am not the same person anymore. i think we will be better in the after. nobody can come thru this without personal and internal changes. its up to us to stay positive and try to avoid the negativity around us. divvi
soolow and everyone--You are correct. You are no longer the "self" you were before Dementia(all kinds) entered your life. You are being tempered in the fires of Caregiving what I believe to be the most horrendous group of diseases to exist. Their entire effort is to destroy our LOs--mind, body, and spirit. We set ourselves against them, knowing we can't win all the battles, but we can get our LOs through the war with dignity and love, and we've seen prooofs they knew it. Small flashes of lucidity at or near the end. We are no longer the original "self" we knew. We are a "self" in transition, being tested, strengthened, beaten down, weakened, and rebuilt in the daily,hourly, minutely changing fires of Caregiving. And we cry, rage, plod, and sometimes even manage a grin as we get through it. Eventually, we will enter our 3rd incarnation of "self", when caregiving is done, once we have said our Good-byes to our LOs and begun the healing process of our grief. From what I've read from those who have earned their *s and what some have told me, they find they are a new "self" and it is good. Each becomes a better self in some ways,than they were before. So, as I see it, from my nearly 23 3/4 years total Caregiving for DH(first with Schizo-Affective Disorder and then VaD) we have chosen this extremely difficult job because we care for our LO; because we will see them through. We will endure, and it will be worth it. It isn't about us at all, but we will be winners because of it. Remember, coal becomes diamonds under pressure, in time. We are just in the rough right now.
This is my fourth year of caregiver to my DH. I too am not my real self, everything is too hard, too hard to explain to someone who doesn't understand, too hard to go out and enjoy an outing, with someone who walks around in a fog, places we go to every week is like we've never been there before. The shadowing is really getting me down, I feel like I'm suffocating....the hallucinating, what do I say to him , when he thinks he sees people in the room with us! I miss myself, the fun I had with friends, my craft groups, all out having fun, with out me. The emails going around no mention of how I'm doing.. Is there going to be an "after", will I make it through...I wish I could have some "now" time for me...then I feel selfish for feeling this way.
I will never be my old self...I'm going to come out of this a stronger new self, more self reliant, independant person...watch out anyone that tries to tell me what to do.. and now that I know who my real friends are that have stood by me through all this...the others are just a lost memory!
Carosi, I love what you wrote...Remember, coal becomes diamonds under pressure, in time. We are just in the rough right now. boy, I'm going to be the brightest diamond of all..
I agree with Divvi - a "brilliant" comparison. Coal becomes diamonds under pressure - then we are all going to come out of this as million dollar diamonds.
I also feel the same as Julia - When this is over - NO ONE is going to make me do anything I don't want to do. It's going to be all about ME. Hopefully by then, I won't be dead or demented myself.
I don't have the self-confidence you guys have. I am not sure I will be a better person for all this. This journey we speak of is so long and wearisome and the expectations are whittled down to so little. I am afraid this "diamond" will be very rough around the edges. My mind just can't accept an end to this. Why have WE been singled out for this tortuous life? I pray for the health, strength, courage and all the other good stuff needed. Maybe I will surprise myself.
This is what I have found, nothing is normal in my life right now, which is my normal, so much so that I no longer know what the real normal is....does this make sense?
Make room for me too. I just the other day said to someone " I lost myself. I don't know who I am anymore" I get these sort of creepy feelings when the light shines a sort of certain way that reminds me of places we went in the fall and saw those colors, or just driving down the street remembering my LO showing me the route as a short cut and now he can't figure out where we are.. I resent what this disease is stealing. Here is is Christmas and last year I sort of invented Christmas...this year I have pretend gifts under the tree and a couple real ones for DH..long sleeve polo shirts which have collars...and for me nothing..he said, " You have the check book, get anything you like.." So today I got a little Shark vac cleaner that will get in the small areas..found it at Kmart. Just can't get in the swing of it though I bought a small turkey just in case the 25th doesn't end up just like any other Sunday.
I don't see how anything could be better at the end. My whole life has been a downhill slide and I have no reason to think it will be any different whenever this ends. We are nearing the end of year 4 and unfortunately my thoughts go to: will he die before I can no longer afford his life insurance? Have 3 years and I doubt he will die by then. I see no light after this is over - just more struggles and downhill.
carosi wrote: we have chosen this extremely difficult job because we care for our LO; because we will see them through....
I didn't choose this job and now I've chosen to be hb's caregiver in a different way: he's safe in the "special unit" of a care center. After becoming worn down and frazzled, this seems the safest, but costly in several ways, option. I visit every day, take him out in the community, volunteer to help w/activities in this unit and am an advocate for him and others there. Keeping staff on their toes :) so to speak. I can sleep at night and no longer keep all doors in house as well as fridge and pantry locked. no more pee and potty clean up. It took years to get where I am (not 23 3/4, though) and now I see myself surviving, beaten but not down. Prayers of thanks for those who have shown me a path to survival and prayers for those yet searching for it or seeing no future positives.
We all feel the same way, you are not alone. This is the hardest time in my life and they are supposed to be my golden years, yea right. I feel like I am imprisoned in my own home. I have no life. I don't know if I'll ever be the same again, what ever that is. I never knew I had so many emotion all at one time. I hate this disease and what it has done to all our lives. I get angry at docotors for not working hard enough to find a cure instead of wasting money on some of those stupid studies they come up with. You are not alone dear friend. Just hang in there like the rest of us. Prayers to all of you.