Where to start. I’ve been reading here every day, crying with you, sharing your pain. Sad to read about the younger spouses with young families going through this.
It’s been a very emotional up and down few months. I know it’s getting worse and will until there’s no more, then what! Cried many tears, some days life seems too hard. I’m struggling to make decisions, just on everyday things; small things seem to throw me off.
DH Reno is now totally incontinent, for a while he was having trouble eating, now is struggling to walk…and now can barely put two words together. Lost a lot of weight. He has been in the NH for 14 months now, is very calm and settled now, the meds are finally right. I find that blank empty spaced out stare in his eyes hard, it's like a pleading look for help, and I can't help him.
The trouble eating was because his top partial denture plate was missing, no one noticed until I took him to the dentist for a checkup and only one the bottom denture came out of his mouth…it suddenly dawned on me the top one was missing. Well after a stressful time getting another plate made, he is enjoying whole food again. Walking is now a very slow shuffle, he has a tendency to step backwards throwing himself off balance and then has a fall. One fall could have been very serious as he fell back onto a big glass window; there was a week when I got calls of him falling every day. Loves the weekly concert, even tries to sing along, but just cries with emotion when he hears the songs we both loved.
A dear old lady has taken a ( I think motherly ) attachment to Reno....I'm finding it a bit upsetting as she now pushes me out of the way so she can sit with him holding and stroking his hands, helping him walk and hugging him ....he's looking at me now as if to say "who are you". I know she probably means well, looking after him...but... I had to say something to the staff, so they are trying to keep them separated.
Sorry this is so long… EDIT to add...yesterday being a long weekend holiday here in the west down under..family came down for a visit, he was so happy, couldn't stop smiling, DD always daddy's girl helped him eat lunch, told us he loved us...♥
Julia, I hear you. Mine has only been placed for 6 weeks but has already fallen 4 times. He too is walking with a very very slow shuffle. He can still talk but most of the time he makes no sense. Hoping by Nov 1 Medicaid will kick in and he will get more comprehensive care. My husband still knows me but cannot remember when I visit and always asks where I have been. He has that blank look which you refer to. I am working very hard each day to keep my thoughts positive so that I do not sink into that deep pit that we all know about. So far it has worked.
I am focusing on doing some things in the house and realizing that I need more socializing. I have not quite figured that out yet. I have friends but they all seem busy with their families and some do not live close by. I feel like now I have no purpose because when he was home taking care of him was my purpose.
I really hate being in a transition stage wondering what each day will bring and feeling like there is no stability to anything. At times I hope the Good Lord will take him sooner rather than later as this is certainly no life for him or me. Tonight when they called to tell me he had fallen again I was proud of myself and did not allow myself to get overly agitated. Again positive and happy thoughts are what I focus on now. Take care.
That was a very sad update.It seems that you have overcome one hurdle after another but now,at least,your DH is reaping the rewards of your incredible efforts. You are one very strong woman now Julia, are you amazed some days, that you are still standing? Best wishes to you.
....I feel that I have to tell you a little story. For the last two years of my dear wife's life she never recognized me as her husband. She would ask me what my name was and I would tell her I'm George. Then she would say, "You're not George". Then I would have to say, "I'm the other George", and she would be OK with that. ....She would ask me questions like "Where do you live?, Are you married?, do you have children?, Do you have a car?, How did you get into this house?" Also she would sometimes ask " Where is George?". I would always give her an appropriate answer. I found that we could spend a nice evening together, holding hands and watching TV with me playing the part of the other George. ....In bed at night, she would say things like, "I'm not supposed to be sleeping with you", and "What if George finds out about us?". Sometimes she would tell me about the good times she and George had together, And other times she would tell about times when George was mean to her. ....Through it all, if I was trying to force her to do something, I was the real George, the mean George, but if things were going smoothly, I was always the other George. ....For her last eight months, I couldn't care for her at home anymore and I had to place her in a nursing home. and though I visited her about three hours every day and would hold her hand and talk to her, I was still the other George. I think she enjoyed my visits but she also enjoyed being close to other men. Either other clients or the staff that worked there. ....At the stage she was in, there was not much for her to be happy about, and when as she sat in her wheelchair in the hallway and would reach out to the janitor as he was walking by, and he would stop and talk to her and give her a little hug, I could see happiness in her face and it made me happy also. No matter what the situation, I still loved her and above everything, I wanted her to be happy even though it was another man that made her happy. ....I've learned that for a dementia caregiver and spouse, Happiness is very difficult to find........I wholeheartedly welcomed whatever I could get. ............................................................GeorgieBoy
CO2...Placement has to be the hardest thing we ever have to do. Even after 14 months, I still struggle with it. We must keep positive or we'll go under. I have learnt to repair and fix things round the house, watching and helping Reno all those year stood me well now. I belong to a quilting and embroidery group, these girls have been a great support to me. I too have prayed for him to go in his sleep one night, and not suffer anymore. Keep busy, and one day there will be a purpose for us in life, for now, it's seeing our Dh's are well cared for.
Bak...Thank you..♥
Cassie* I am amazed how I got through this far. Coming here, has helped me, sharing and knowing I can come here has been a blessing...I read more than post, but I'm here every day. Thank you .
Goergieboy*...what a beautiful story, thank you for sharing that with me. Your love, devotion and caring for your wife shows in your commitment to her...you are a very special man...I'm sure she knew that. The real George or the other George, whatever made her happy, that's all that matters...and I'm sure to see her happy, made you happy too. I truly believe now, it's what ever it takes that makes them happy, I will remember that when the lady resident reaches out to my DH...
Oh Julia, my heart is hurting for you. I know EXACTLY how you feel. This Saturday marks one year since I placed Tom. In that year he has gone from walking, talking & feeding himself to being in a wheel chair that reclines because he still wants to get up. He has to be fed & his food is pureed because he can't remember how to chew. He talks but doesn't make any sense. He still recognizes me (most of the time) & he has lost about 50 pounds. I go in most everyday & I go in at lunch time or dinner time to feed him. The staff at the Veterans Home take very good care of him & they treat me like family (some of them even call me Mom!) How do I cope? When I am there with him I sit with him & talk to him & stroke his face & hands & kiss him (that's when he recognizes me!) & I look lovingly into his eyes & tell him that I love him & a lot of times he will say it back to me. Then when I leave the building & get into my van I leave him there. I come home & stay busy doing things so I don't dwell on the fact that he is there & I am here. Does that mean that I never think about him or shed tears for him or us? No, I shed lots of tears, but I choose not to think about him & what could have been. We all have to cope in our own way. It isn't easy for any of us. Julia, I'm sending (((HUGS))) to you & to everyone here who needs a HUG!
"A dear old lady has taken a ( I think motherly ) attachment to Reno....I'm finding it a bit upsetting as she now pushes me out of the way so she can sit with him holding and stroking his hands, helping him walk and hugging him ....he's looking at me now as if to say "who are you"."
Sheesh- sometimes I will be reading here and a post just snaps for me and I remember something I thought I had forgotten. This, from Julia, was one.
At rehab my husband seemed to age quickly, partially due to weight loss and partially to an unflattering haircut he was given. Anyway, I was visiting my husband. A man rolls up in his wheelchair and positions himself between my husband and me. He somewhat "scolds" me for tiring my FATHER out; that it is time for me to go because "the game" will be on tv soon and retired Navy men need to stick together.
I am older than my husband and he was never in the Navy.
The strength and kindness shown here is amazing- sending prayers to all.
ElainH..Thank you for the hugs. I remember back then at placement time we were pretty much at the same level with our DH's, but it seems now your Dh is that little bit further along. Reno is so calm now, doesn't put up the fight to get out of there like he did, that does make it a little easier for me. A few times he has called out to me "Jul" as he used to call me, and I think he still knows me! Yes, we have to cope however we can, just some days it's so hard to walk away and leave him there and then it's tears all the way home. Time to give those big girl panties another tug up and carry on. Sending hugs from down under...I'm coming to the states one day, it's on my bucket list, hopefully meet up with some of the family here.
Abby*...yes, some times, some one posts here, and that post just clicks with us. Many times I read something and shed tears for that post. That man being a Navy man himself, must have thought it was his job to look out for your Dh. I remember how much you went through with your Dh, your strength and courage inspires me too The help and kindness shown here, is amazing. I don't know how I would have got this far without being here.
The Other George: I have wondered about my dh. He was dx'd 2 years ago. But most of our 13 years of marriage, he has said What's your name? I have always thought he was playing. I got so tired of saying Bonnie, I started saying Puddin Tane. Lately I have wondered about that. Could this be part of the disease? We had been asking the Dr's for several years if he had az, and was told no, just natural part of aging. He was dx with both az and vascular dementia. Bonnie
Julia how difficult for you to witness his attachment to the lady. it would be devastating for sure. but I think if I could I would want my spouse to feel companionship if I wasn't the one to be able to give it. these folks are not of right mind and their actions are primary. but I know its very hard. its good to hear from you and I hope your dear Reno and you can adjust to the changes. this disease robs us of so very much. hugs. divvi
Divvi, it was hard to see the dear lady get so attached to Reno, but staff are keeping an eye on things, and I'm happy if Reno is happy. Placement is easier somewhat, though still lonely at home....I feel it most on weekends, see other couples out there enjoying what we were out doing most weekends...lunch, shopping, walks along the beach..etc. yes this disease robs us of so much..♥
Julia, it must break your heart to observe Reno and "that woman" but what can you do. As they say, what doesn't kill you makes you stronger. Thinking of you.
Thanks cassie*...it's not like they can really get up to much, but it's still upsetting. As long as i still get to have quality time with him, he is really in his own little world now i'm getting stronger as time goes by. daylight saving there for you next week.
Daylight savings is dreadful! It becomes difficult to be strong all the time when it would be so good to be just held and comforted ourselves. When our Dh's are alive but not as we knew them, that is the heartache. Even worse than the grief of death. Hoping that there will be some joy for you soon Julia.
Julia thank you so much for the update. Did I tell you, Dado's male caregiver is named Reno, short for Renaldo.
When you check off your bucket list on your trip to America, make the stop in Hawaii and I will come and see you. If you can stand a real boring country place, you can stay with me.
Coco, You will be my first call of port if I get over that way. I can't imagine it ever being boring over there, quiet will be nice for a change. I have visions there of palm trees, white sand, sunshine and a lovely easy going laid back life...I could handle that!
Julia, how good to have an update from you! It is all so heartbreaking isn't it.....
But what I glean from your post is that even in the midst of so much suffering, you are still searching out the good things and being grateful for them. That is wonderful Julia!! It is the only way I have survived this as long as I have.....
It is wonderful to hear his swallowing issues have been corrected. Whew! I know that is a huge weight lifted from you!
He called you Jul ♥ How precious I know that is for you! .... never, ever doubt that he DOES still know you Julia. There is the proof right there if you need it. There may come a time when he wont be able to say your name, but even that does not mean he has forgotten you.. it ONLY means he has lost the ability to put voice to his feelings.
I think I mentioned to you before that my sister also lives in Australia. If I ever do make it there to visit I will be sure to look you up!! If you come here first I will try to meet you at Coco's, she is for sure on my "bucket list" :D
Elaine, your post caused a few tears.... I am so glad that you are doing so much better and are having these precious moments to treasure ((Hugs))
Nikki ..thanks so much. Your my inspiration, just like you say, little things, like a smile and saying Jul was precious. I know it's going to get worse and harder as he declines more, but for now I'm grateful for every moment we have together.
I'm on the west coast Nikki...but have family on the east coast in Sydney...That would be so awesome to meet up wherever!