So happy you enjoyed your outing, Joan. It does take time for us to get back on track. I don't mind going out - in fact I need and want to go out every day - but just haven't found what I want to do with the rest of my life! I have so much time on my hands now, put my house up for sale, sold most of my furniture, house is clean and ready to show- and don't know what to do now!
I can tell you are making progress and I do hope you will continue to feel better with more energy.
I think I will have my children read your blog,maybe it will help them understand where I am right now. I know they mean well, but still pushing a little too much.Thanks ,Joan, for a great blog.
I guess I was expecting to much of me. Your blog helped me see me in a new light. Maybe now I can just let things happen as they will and stop trying to orchestrate my life when I am just not ready, and accept the fact that my best friend and lover is gone where I can't go and just love him where he is.
I am so happy for you. You have conquered a huge hurdle. Although you still have lots to do and many concerns as his advocate....it sounds as if you are reaching a much healthier place for YOU. You will be better able to do whatever tasks you have to do if you take care of you too!
Joan et al: From my post on "March 14 Marches On" I took a moment and ran a search looking back at the comments I posted between March '13 to March '14 "It was truly a mind boggling experience. My personal evolution ranged from the lowest depths of this disease we caregivers experience, to DW's horrific suffering at the end stage and finally to the death of the love of your life, to say nothing of emotions of grieving intensely over her loss AND THEN through a series of unrelated events. I began my life anew. All within one year! I could never have conceived of this happening to me, I'll use the hackneyed phrase "I never thought I'd ever feel this way again" yet here I am with a smile. I think the best indicator is what took place during a regular check up with my PCP. He walked into the examine room took one look d said, " OK what's going on? I've know you for 11 years and never saw you looking so happy and never with a spring in your step! If anyone deserves it, you do! He went on to say his wife cried the entire night when he brought home a copy of the poem " I'm Free" Sue had stashed in my Tux. They both thought it the most unique gesture of true love that they had ever witnessed.
Joan your emphasis on each at his/her own pace is paramount. We have no idea how our psyche's will react and when we will respond. No planning can account for it we all have difference experiences and circumstances to cope wit.
Joan, this is an excellent blog. You have developed such insight & wisdom, although I realize you've been through hell to reach that point. You are an inspiration & example for all of us. By the way - 60 pounds - woo hoo!!!!
Jazzy, I really like the way you put it - they've gone to a place where we can't go, & just love them where they are. The last part isn't always easy for me, but I'm trying.
Marty, I don't think I've read the poem "I'm Free". Where can I find it?
MIM Mim Here is the poem and the story that makes it so special to me. Several months after Sue's passing I went to the closet to pull out my tux for an up coming event. just to check size, style, if it needed pressing and cleaning it had be years since I had worn it As pulled it out of the closet to try it on inside the storage bag was an envelope with some touching loving thoughts of our marriage and also contained within this poem torn from ?? When it was placed there who knows, but I'm sure Sue knew that I wouldn't be wearing my tux while she was still alive. She knew I'd read it after she had passed away. The last Mini Mental exam she had was in 06 and she couldn't write a word let alone the sentences contained with all her love notes and the poem. Her mother had AD, we cared for her until her passing Sue had no illusions of what the future held for her. Several yrs ago she was Dx with cancer - she was still quite lucid and declined chemo a brave move to speed up her passing. A very unique lady!
I'M FREE Don't grieve for me, for now I'm free I'm following the path G-d laid for me I too His hand when I heard him call I could not stay another day.
'To laugh, to love to work or play Tasks left undone must stay that way: I found that place at the close of day If my parting has left a void, then fill it with remembered joy
A friendship shared, a laugh, a kiss; Ah yes, these things, I too will miss, Be not burdened with times of sorrow, I wish you sunshine of tomorrow.
My life has been full, I savored much Good friends, good time, a loved one's touch
Perhaps my time seemed all too brief; Don't lengthen it now with undue grief.
Lift up your heart and share with me: G-d wanted me now. He Set ME Free
Today I had one of those "moments" that are so difficult to deal with. I decided to try to find an online radio station, so I could listen to the music I like—quietly, while I work on the computer. There are no longer any local radio stations that carry this music.
I found a station and clicked on it. The room filled with beautiful music—and my eyes filled with tears. For just a minute I remembered how I felt back when DH was still my husband, and I was still me, and life was normal. My heart broke all over again, because the magnitude of the loss truly did flash before my eyes in an instant. It's funny how music can transport you to another time and place. After all this time, I didn't think anything could take me back to those other memories, but this music did.
This is one of those countless little(?) stages that nobody sees but us. But they pile up, one after another. And yes, it takes us time to come to terms with all the changes we are living through. I think this one is going to take me a little more time than usual.
As far as accepting it, and getting on with my life… It would be a lot easier to accept if I felt like I still had a life to get on with. What we were together pretty much was my life. It's hard to start over from scratch when you're getting on in years and caregiving has all but chewed you up and spit you out.
Joan, this was a very insightful blog. I'm going to save it for the next time somebody tells me to "just get on" with my life. Maybe it will save me from poking them in the eye for such a remark.
JanK yes those moments just seem to pop up out of nowhere sometimes, just now I thought I was fine, and then a thought of him came up and my heart broke yet again.
Joan I loved this blog. And of course this applies in all life situations, we need OUR time to deal with things.
Jank - you can often find medleys in YouTube. I also use Spotify because I can set up my own collection. I do free and the selecton is great. Another one is "live365.com". They have tons of radio stations of every genre you could want. They have free where you have commercials or subscribe -I do free.
Joan--this was the most positive blog I can remember you writing since I joined in 2008. It is encouraging that although you call yourself a "slow learner" in acceptance, you are clearly making progress. And congrats on the weight loss--I'm sure your doctor will be thrilled.
Joan Thank you for this blog. It comes at a time when I am trying to move on with decisions. For some reason I am having anxiety about making decisions. I have always been able to make them with confidence. Recently I applied for help from the LTC policy I have. They sent me the paper work and I had 30 days from receipt of the letter to fill out paper work to get the claim going. I am just bringing in someone 2 days a week for 4 hours each day. That will ease Dh into having someone around. It will also give me much needed time. I needed to get the paper work to them by March 14th. I ended up calling and asking for more time. She said I had none and could fax it. I ended up emailing it on March 13th. I still wonder if I am doing the right thing. I think from your blog, it is a matter of if I am ready to move on. I am, and think I really can't wait until I can. Then when the time comes to make those decisions, I cannot.
I know from my health issues right now it is the right thing to do. I am not in denial. I guess that when you start taking these steps, it does become a true reality. Sorry, I am just not sure of myself and my decisions. I know it has to do with guilt and the loss of my DH (he is still here in body). Then I start thinking is he really that bad that I cannot handle this. I know the answer to that. Just cannot help asking myself. Maybe, because he has had a few good days. But then last night he sits straight up in the bed reaching for something in the air. I know it is time.
I will be moving on with this decision. I will be getting help. Just needed to write this and see how I really am doing the right thing.
Vickie*, I knew you must be up to something because you hadn't posted as often as you usually do. What a tremendous job you've done - no joke selling furniture and getting ready to sell your house and move. I'm glad you let us know - I was beginning to wonder where, and how, you were.
I always say that I never know which of my blogs are going to resonate with my members. I just write what I feel and hope that my soul bearing and insights help others cope. I am so pleased that this one seems to have helped so many of you.
And always remember that this journey of ours is not a straight line. Two steps forward; one step back; a detour: a few more steps forward; a few steps back until, eventually we come out of the tunnel a whole lot wiser. I hope.
Yes, Mary75*, I have been up to something! A lot! Signed up yesterday for an exercise class two mornings a week, too. Went to the KY GreenFair today. I stop by the ALZ Center where DH went and talk to the friends we made there. Since all our "so-called" friends disappeared a long time ago, I just go and do by myself. I read here everyday - just haven't posted much. This site was my lifeline the last several years - couldn't have made it without you all.
Joan, you're an inspiration to all of us and I agree, you just know the right thing to say at the right time. I will be eternally grateful to you and this site...it has gotten me through almost 6 years of this journey.
Jank and others...our situation is a bit different and I want to share some of it to give you another perspective and perhaps make you more comfortable when considering your choices.
DH signed up for LTC and 10 months later we found that we needed it (who knew?), Perhaps because of my own physical disabilities. If I did not get in-home help (for my protection and to do whatever care was needed) the psychiatric hospital would not release him to home. So in a way we had no other choice other than institutionalizing him (ALF. NH or psych hosp) I knew from the beginning I would need help caring for him because of my limitations, so I never agonized over getting in home help. Even though we've had in-home help from the beginning, it has not been easy because my husband has been and continues to have difficult behaviors with personal care and sleeping. But I have never second guessed the decision to bring in help, particularly since his LTC coverage paid for it. Perhaps because he came home after being in a psych hospital for 3 months, but I know I could never have given him the quality of life he's had for the past 6 years without the help and I know a facility could not have either. My husband has FTD and all the raging behaviors associated with that type of dementia. I would encourage each and everyone who has LTC insurance to use it when they need it...you're doing the best for both of you. And what if you die? If s/he has never had to accept care from someone other than you, how do you think that will go? And you won't be there to advocate for your spouse.
Good for you Joan!! I am SO thrilled for you! Getting out and enjoying yourself! I am also so grateful for the content on our own time. It has been 2 years since my husband went to live in a facility and I get frustrated with myself I am not stronger. As others have mentioned things often come in cycles. Thank for the reminder to be compassionate with ourselves and know we are all doing the best with can with a horrid disease.
Joan, congrats on the weight loss - just sorry they way it came about. Thank you for this article you always bring something for me no matter what. I am going this week to Frank's army reunion. A trip I never thought I'd make after he died but friends have invited me to stay with them at their condo so I'm going. We had been going to this reunion since 1995 and always enjoyed but I just couldn't think of going alone. I am looking forward to the trip. It has been almost 18 months since he passed and some times tears come over the least thing that reminds me of something we did, said, enjoyed, etc. No predicting grief or the length of grieving.
Once again, thank you for the kind words. I appreciate that you share with us during good times and bad. Even though I have not been visiting as much as I used to, it is a me problem not a problem with your blog. After my initial shock of having to deal with so many problems, dh's health, shutting down the business, taking on all the mental, physical and emotional etc etc stuff of life alone, I have just hibernated in sorrow. My children are very supportive, although young themselves, but there is nothing like other spouses that "get it". Sometimes I would come on here and read messages and just feel that it can be worse and will be and I couldn't look any more. But you and others here show me that we can get through this and will, probably.
Hi Joan, You have captured all the emotions I have been feeling. I put my dear husband into a memory care facility a month ago and I am still quite bereft and sad most of the time. When I visit him we have nothing in common to talk about anymore and sometimes he doesn't even know I am his wife. I still visit every day but wonder if this is wise as I am so sad and grief stricken after seeing him. I just seem to cry all the time. I have gone out with my friends and am planning some trips away but there is no joy in it, no joy in my life. I sometimes wonder if I will ever know happiness and joy again. This disease is so terrible. My husband dies a bit more every day and a piece of me dies with him. It has only been a month but sometimes I wonder if I will make it through this very difficult and heart wrenching journey. Thanks for listening and all the best to you, Jenny
Joan, finally got around to reading the two blogs: In Our Own Way and On Our Own Timetable.
Thank you so much. I've printed both blogs for my friends in the hopes that this will help them understand where I am with my husband's AD. It's only been four months and I'm going through every emotion you describe yet have been unable to express my feelings to friends and relatives.