So I am apparently one of the lucky ones who has a DH that is sweet, responds with whatever I ask him to do, not violent ever, and the perfect patient always. I read so many posts, and kneel and give thanks for my good fortune in that aspect. Yet here I am, so many years later, encompassing so many new downward symptoms, comparing them to those I hear of, and counting my blessings, all the while, wondering how I can possibly endure this for so long. Doesn't seem to me like I deserve any 'poor me' blessings. No major bumps in the road, only one heart attack, a hernia surgery, and the expected roller coaster ride on his daily downfall. I am 60 and he is 73, and we have had a wonderful life. He is wonderful, or at least has been in our life together. So here I am, feeling like I just don't understand how he can still be surviving this horrible illness. Dr.s said he would have succumbed by now. That was two years ago. False expectations are something to be avoided. I have finally arranged for three hours on Thursdays for myself through a wonderful agency in my area. That in itself takes some getting used to. On the way home, I cry, knowing I need to go back to my situation. That three hours seems like one, and takes so much effort, not worth it. He is upset for the remainder of the day, and I just don't know what to do with the three hours anyway. I cared for my Momma and Aunt for 18 years, and now my DH, and I honestly don't know what do do with myself. I often wonder just who I am. Always the caregiver? How selfish I feel. I'm not looking for props here, just saying that those of us not going through the trauma and awful experiences we are reading about, are also feeling despair!! Lots and lots of despair!!! Just know that there are others like us that need to keep communicating too. We go through all the daily trials, etc., and are also in need of a caring ear.
Janny, I, too, know how you feel. DH is mostly sweet, compliant, not ever violent, etc., and I am so thankful for that. I, too, take him to an ALZ Center 2-3 days a week, for 3 hours at a time - and I don't know what to do with my time either! I do go into my part time (I can work whenever I want to) job for an hour or so; and at least get to talk to 'normal' people! I grocery shop since it's getting harder to take him to the stores. I hate shopping - so no malls! I usually just come on home, sign onto my computer - and that's bout it!
You have had many,many years of caregiving. Bless you - you deserve some respite time and I hope you can figure out what to do with it!
Coco, can't imagine what you have been through, and yet you send me a sincere hug, of all people. I am grateful, and don't know why I'm again crying. My prayers and thoughts are with you so much. All that you have shared have helped me to realize how fortunate I am. Just want those like me to share and know that they are also not forgotten, and we understand the trials that are so difficult for all. Thanks again.
((((((Big Hugs))))) Janny. I am one of the lucky ones now. My life is easy right now, compared to so may others. Yet we are far from a normal life. I understand. For many years my DH was so unkind to me. Now he is so lost and so in need of me to help. How can I get mad, not at him. Just sad at what is.
Earlier today I was thinking. Now that I have quit work to take care of him. I have all the time in the world and no longer have someone I can share it with. So sad. I understand your tears. You are not alone.
janny thank you and I am coasting a bit better today.
blue you are always on my heart, as I think of your precious paper route job you had to give up. Lucky seems a funny word for you to use, but they are YOUR words. I see you as blessed with such a wonderful spirit.
I too have a very sweet caring HB. So kind; does dishes after every meal, one of the very few things he does on his own other than bringing in firewood in the winter months. He has always been pretty much this way, so hoping anger and other such things like that that others here have to expereince don't happen. We have been on this journey for a # of years but DX was in '09. I am only able to leave him for a short time. Some days, a few minutes to him seems like hours and he gets upset with me. Of course that only lasts for a few minutes and the memory of it is gone. Helping me move furniture yesterday to clean carpets, he couldn't remember where the chairs ect. went. We have lived here over thirty years lol !! I, too have the same feelings,janny. But we all know "it is what it is"
janny, dear, consider yourself ((HUGED)). You wrote that you are one of the lucky ones. NO! No caregiver here is lucky in any aspect of the word. You said that you were lucky because your DH isn't violent, he is sweet & compliant. Sometimes I wonder if that isn't almost worse. It almost gives the false hope that........well maybe it's not that bad. I am angry & with my DH's aggression I have something to direct my anger at. (It's not really at him, but it's at his aggression & the whole disease). You on the other hand are probably also angry, but it's hard to be angry at someone who is sweet & compliant. We all have this journey we didn't ask for. (but we unknowingly did sigh up for it when we said “for better or for worse or is that in sickness & in health.” I think both fit here!) I was hoping to keep my DH home for as long as possible & hopefully to the end. Well I've hit “as long as possible” & the wheels are in motion for him to be placed in our local Veterans Home. More (((HUGS))) to you janny!
janny, sending you a hug, my dh also is good-natured ...he even giggles sometimes (which I am sorry but is sort of creepy and unnerving) but I also cry and feel the loss of an equal partner.
janny, my Dh is going on 13yrs soon with this dread disease and me caring for him 24/7. hes been smiley and good natured with exception of a time in the early stages when a med caused him to be prediabetic and sugar levels off. since then hes been such a sweetheart to care for and even as he is 90% bedridden and unable to turn or move his upper body, he smiles and wants to hold my hand and rub my arm. that doesnt alleviate my own heartaches of lonliness for my spouse and a normal way of life. so yes while others have terrible issues with violence or aggressive spouses, those of us with easy going ones, suffer just as much in different ways. we all have lost our emotional, physical, and love counterparts that was part of the union. now its a one sided love affair and not many rewards. sending you (((HUGS)) and to everyone who is feeling the need for human contact, which is all of us. :(
You are all so sweet to post your thoughts. I receive hugs and shoulder pats from family and friends, but your comments touch me so deeply. Maybe because I know you have 'been there, done that', and I feel you are all sincere and really do understand. Somehow it helps me to not feel so alone. Thanks so. Hugs to all of you too.
janny, I know exactly how you feel. We've been on this journey almost 5 years since diagnosis and 8 years since first symptoms. I cry a lot, especially when someone feels sorry for me and tries to help in some way. 13 years....Oh Divvi! Another, I think it's Sandy, spent 20 years on this journey. Without Joan's site, I would think I was all alone. Thank you all for being here.