This is for Coco and others that may need it. It has been a while since we have had to need a rope but I think it is need now. It has lots of knots for people to hold onto.
I am grabbing on. Oh Charlotte thank you for that. I can't believe how many tears there are in the human body. What is it about your offering this rope that hits home so hard....deep, sad, terrible, and beautiful. My faith in humanity is brighter than it has been ever.
Coco - you always bring a smile to my face with your comments. I'd love to have some of your candy and will pass up the margarita. We visited your beautiful state right after retirement and it was wonderful. We have regrets that our stay was not longer. Always planned to go back - just shows don't put off anything you just never know what is around the next bend.
Coco - let us know what the VA says. My husband is not that bad meaning he doesn't fight me on anything (yet), so I have not had to use the VA social worker. I did talk to her about placement, where it was, etc., but not much else.
Oh Charlotte thank you. No return call from the Va yet. I may be barking up the wrong tree at this time. They told me that the small amount of respite and any caregiver help is when he is really incapable.
For anyone reading this, especially if this is new in your lives, though I am still very new in the game, (about 1 year), I think I may have taken a first hurdle.
At the risk of sounding like a platitude....well, ACCEPTANCE has been the word of the week for me.
I hope that you can handle it better than me, the so called strong one. This week I have HAD to realize that no PERSON or PEOPLE can give you all the comfort you need, and I have possibly driven some away with my freaking out.
I am working on getting help with medication for ME< and counseling, but my loved ones can only do so much.
This board is truly invaluable, I am coming to love the men and women here. You are the ONLY ones who know.
Others on the outside just don't GET IT..that it is not like a "regular" illness, though oh how hard I know it is to have any illness in your life, I am not downplaying that.
It is the personality changes in myself, the anger, the deep grief, the over the top sobbing, that took my by surprise.
I am determined there has got to be a way, for us. to survive better. Hopefully I can have something more helpful to offer.
Coco - acceptance is not just once, but as they enter new stages there is another level of acceptance needed.
Also, there are many others here that only this place for support. They either live out in the country too far for support groups and/or have been abandoned by family and friends. That is why this place is so special and we have a rope for everyone to grab when needed.
Coco, acceptance is an on going thing and like charlotte said the new stages require new acceptance. I am one of those that have no family or friends that will help and this support group is my rope and I hang on for dear life. The last two weeks my computer hasn't been working and I have been a wreck. I have my rope back so that is good.
Yeap I am there too Coco- I am certainly not the same person I was before this devil of a disease came to live at our house. I am either upset to the point of crying or mad enough to tear the house down around us. I see no signs of the person I once was. And as I loose more of DH--I also loose more of myself.I do not know what will be left(if anything) when this is over. Hugs to all and hold on tightly to the rope of lve offered here
Dear friends-trust me-you are still you. Life after will be different, not as you once planned. Being "single" after a good 51 yr. marriage was frightening-but also challenging and that is a good thing.
Yep, I am still me....a new and improved me! I chose to survive just like I choose to thrive. I had a wonderful marriage to a kind and thoughtful man....but now I am embracing a new wonderful life.
I've read that we're more likely to get AD when we've cared for a spouse with it. I guess it's the stress and isolation. I'm trying desperately to stay me. Bluedaze and Sandi, your posts are encouraging.
Gailn , bak, and Dazed, big hugs to you, I wish we could go shopping and eating and to the beach together.
deb42657, yes, this niggling thought came to me, that it may be just for NOW I am accepting, I noticed when I awoke this morning I really did not want to face the day, this person that always would leap out of bed ready for my Kona coffee and my crafty day.
I have not been calling my sister or anyone to talk, or sending them emails. It is too much for them.
I'm reaching out for the rope all the way across the big pond...I feel I'm losing me! I'm reading and taking in all encourgement given out. Thank you ladies
You aren't actually losing yourself. You are just putting yourself on a shelf like I am doing. That is the only way I am staying sane. One of these days it will be our turn to enjoy life again. Now we are "enduring" it. We are doing what has to be done and it is selfless work taking care of our spouses. No room for ME.
Thank you Shirley got it! hanging on for dear life! I'm a quilter and lose myself in my sewing, but I do miss not meeting up with my quilting friends,that's all that's keeping me sane...
Hello ladies, I am glad others are grabbing the rope, and yet, it is sad too.
Oh boy, yes, put ourselves on the shelf. My "revelation" this week was it was either do or die, and to decide what was most important. At least for now, I have to take care of him. If I break down like I did earlier this week, I will not make it.
I have to put him first, and as long as I can handle second, then do.
I KNOW there will be more hard days, but I HAVE TO not go as crazy as I have been . I can't bear it it is too hard.
Today in my fantasy, I told him, "Instead of us talking about your losing memory etc.....let's just say you are getting better!" He agreed wholehearted.
Do you sense the denial, or is it so blatant... lol.. I almost convinced myself he did not have it. Just because his symptoms were very slightly better today.
Even the regular customers at my weekly Farmers Market are asking me what's wrong, and why does he walk like that?
HOWEVER...I am still hanging on the rope, it sure is a strong one. I picture it, instead of being some miracle fiber that does not break, it is a string of men and women going through the same things, knotted together with love, and rooting for each other.
In Aug '06 I joined another alz support group and it was my great honor they chose to use the first poem i ever wrote on their Welcome Home Page. it remains there today -
"The Rope of Hope"
Loving words a weeping heart, Such is a caregivers world apart.
Holding strong we face our day, We watch our Loved Ones slipping away.
For those in need and deep despair, A helping hand appears by air.
The "Rope" is thrown, the grasp is tight, Caring Souls sending rays of light.
A warm embrace and Special Prayers, To each a hug from one who cares.
Divvi/Aug '06 copyright for newcomers and those who need 'support' from the rope:)
Julia...I too am a quilter. Before I found this site when things got out of hand I would try telling myself as I was dealing with my DH of 65+ years that if I could quilt I must be okay but that didn't always work. This site has been a lifesaving Godsend for me and now I have someone to quilt with too...how good can it get! Hugs to all. Ro
Lovely to know there's another quilter among us...stitch by stitch we'll get through this ro1928. I have a blog too, that helps me to lose myself in it at times too, though it does up too much time, but that's me time!
I did do quilting, have not really worked on anything in awhile. I enjoy putting quilt tops together, I have a quilt top that my grandmother made, never finished. Guess it runs in the family. I like to do wall hanging and such also. I have a nice sewing room that does not get much use now. I need to get back in there. Still have some fabric too. Gave a lot away as it was just sitting and felt it needed to go to a good home to be made into something nice.
How nice to know there are quilters among us. I have a nice sewing room and I could go in there and spend the day - at least I'd love to. I've been working on a t-shirt quilt for one of my sons who is (or was in younger days) an ultra-runner. I think if I can just sew a little each day (doesn't always happen) then I can pretend things are normal for awhile. This sewing room was planned and accomplished by hb and it means so much to me. I too have more fabric than I can ever use. Hb built cabinets in the sewing room and fitted the shelves so they pull out and they are crammed with fabric. He also being the tidy person he is bought plastic boxes so I could Organize! Well I'm not the organized kind to that extent so I kindly invited him to allow me to take care of my room. "Oh those were the days my friend - we thought they'd never end" to quote a song that keeps going through my mind. Divi - the poem is so nice I keep reading and re-reading it.
I quilt, sew and crochet. At least I use to do that, but haven't done much in the last couple of years. I have a nice sewing room with a regular sewing machine and my wonderful embroidery machine. I have decided I am going to get back to doing some sewing and quilting. Since I can't leave my dh alone...I will at least go into my sewing room alone.
Lovely poem divvi.. I sew everyday...keeps me sane, DH is happy watching TV, so I sit and sew in the same room, so I can be with him...we need to keep busy and not think too much, this is my way.
Boy, I needed the rope last night. DH has problems with his sisters and mother. he refers to them as "the girls." I can handle pretty much anything that comes out of his mouth except for when he refers to them and me in the same group as "you girls ..." Boy I lost it. I was so angry. He was upset that people didn't understand how hard it is for him. He was trying to figure something out and I guess I was not being attentive enought. He said "you girls just don't care how I feel." I came at him with "both barrels." Boy I was mad. He then said, "you will wish you had been nicer to me when I am gone." Again, both barrels.
This morning, I got him a cup of coffee and sat down next to him on the couch like we do every morning before I go to work. He asked me what was so different between this morning and last night. He asked if I had forgotten how mean I was to him. I told him that I had chosen to forget and he better be glad that I forget these kinds of things.
While we visited about something on the news, he started to say something about "the girls," I let it pass and he changed what he was saying rather quickly. So, I guess my little (very big) out burst must have made an impact on him.
Even "us girls" and the boys who handle everything perfectly and never get mad and always agree can lose it sometimes. We even cry, scream, yell, punch the wall, then we splash water on our face, and crawl into bed with a good cuddle blanket and finally have a good laugh at our behavior. I actually slept good last night.
You're not going to believe this. I don't believe it myself. When I went home for lunch today, DH was pleasant/almost normal. I made us some lunch and commented to him that it looked like he was feeling better today than he did yesterday. He told me that last night, his head was all confused and he kept thinking weird and bad thoughts. He said that he got up during the night and tried to watch TV but the bad thoughts kept coming up. He then knew that he better go to bed and sleep. He told me that when he woke up this morning, that his head seemed clearer and he could think better.
I think that he had a really bad case of Sundowning last night. Thank goodness it doesn't happen every night like it did last night.
That's great Mary...lets hope there are more good days like that. That Sundowning thing wierd...my Dh gets it almost every night..comes out with the wierdest things, I don't know what to say to him at times
Where's my needle and thread...started already..looks like another day of not knowing what to expect.
Crying jag today, I think because of the doctor visit. Also missing him. He is having a real bad day, tripping a lot. Visitors next door are taking a mini cruise to Maui for a few days, good timing I cannot take anymore. How I love and hate them too.
coco from what you have posted of late, it appears that with these particular neighbors, your life will be a constant reflection of 'what was or should be,' i would find that very depressing to be around. i can see why the crying jag,and not just for what you explained but having it flaunted in your face just makes it much harder to digest. like you say, love and hate.
feeling a bit better already divvi. thank goodness the people next door are just visiting. gone early January. The are not "all" bad, as long as we don't discuss MY life
AND I loved your post on the other thread, you are certainly not the odd man out. Just hearing that you can make new friends through this, and drop old ones if need be, is very encouraging to me. I have always been the through thick and thin with friends, now it is just thin and time to move on.
the rope of hope is still here, hanging with lots of knots for anyone who needs to grasp and be lifted out of the dark hole. we used to have a rope of hope made out of helping hands too. maybe its time for another one.
someone grab my hand!! and then another will grab yours and so on and on. support for one another.....show we care! lets see how many hands we can connect??
Wolf - that is a good one and just how I feel. When I woke up this a.m. my first thought was "I don't know how to do this". what? I guess just about anything to do with dementia. I got up to come read some of my dear friends at Joan's Place. I've only been here a few minutes and I hear dh getting up - so my day begins. I so wanted a few more minutes by myself before This weird day begins. oh well ----------------- grab the rope or hand or whatever I can reach.
flo39, YES! Just a few minutes alone in the morning to collect my thoughts & have that first cup of coffee by myself........but no. Oh well. So I am grabbing your hand!
really need that rope today. I have not posted much lately as there are so many other needs here, how I feel for you all! I really do.
It is only 4 days until Dado is discharged from his Adult Foster Home, and I have been awaiting final approval for the move to the Veterans home in our big town. It is all so last minute! I want to tear my hair out! There is a chance there could be a delay and he will come home briefly. Just trying to prepare myself for that, he is so much harder to take care of now. He can't walk, and he is totally incontinent. I don't mind that, but our tub he cannot step over and I cannot lift him. Oh I know it will work out...but...
also, Dad just died last month. This was expected and I went up to Canada for his service. My grief has not been too bad there, not like when sister Dianna died from cancer two years ago.
And Dado just cries like a little child.
NOW! Mom just had a stroke, and is in hospital. She needs surgery to remove some plaque from a blocked artery in her neck. 35 years of nursing Dad, and now she does not get a damn break! We are very close, I AM NOT PREPARED TO LOSE HER NOW TOO, and the next person that tells me "you never know when it is time", is going to get a slap! I mean give me a BREAK!!!!! I know that how stupid do they think I am. Can they not see the painful patterns here? NO one will just let me FEEL how I need to feel. I am alone, no one to talk to, except for our VA social worker that seems to love me.
Holding on the that rope, it is slippery with tears.