Friday was my Birthday (56th) and it was a very sad feeling day for me. My DH had no inkling that it was a special day and never acknowledged it. My best friend forgot to call me and, when she realized, called today to apologize. She told me what an awful life I have and this set me thinking...My life has not been awful! I married my soulmate 31 years age and we had a wonderful life which included 2 amazing kids, fun and exciting experiences and good relationships with family and friends. Now. with the alz monster in the picture, my relationship with my DH is slipping away. It has made my life very, very sad and, although I sometimes feel my life is awful, I don't really believe that to be true. I have learned who my true friends are and what that really means to me. I have had the privilege of meeting new people I take the liberty of calling my friends who face each day with courage and strength that awes me on a regular basis. (I have found you guys on this site who keep me going every day with your caring, love and humor!). Awful, not today. Different, yes. Difficult, yes. Sad, often. I had a plan, a script for my life with my husband. Somebody set it on fire and it is lost. I will get through this 'act' and hopefully have time to figure out a new script for life in the future.
It's been 2 years without a birthday card or recognition for me. Our 45th anniversay will be this June, but although our lives are now much different with each passing month ... and most definitely NOT the script we had expected ... we can still enjoy going out to a restaurant before going to our Tuesday support group meetings and then take in a movie afterwards. We continue to enjoy the lunch and movie exerience together, even though by Tuesday night my wife will not remember where we ate, what we ate, nor what movie we saw. But awful, no. A you said, different, difficult ... and, way too often, sad. Very sad.
Susan, Thank you so much for posting your thoughts. I've been feeling sorry for myself as I turned 54 on January 1st and our 25th wedding anniversary was on January 25th.......Naturally, DH didn't remember either......It is a lonely feeling. No calls or cards......It is sad, but after reading your post, I'm ready to start again!
susanB a happy belated birthday to you. yes its very sad to now not have the other half of our lives share the important dates with us. its gone forever and we must keep the memories alive to help sustain us and tolerate the loneliness. like you my DH was my soulmate and my 'cheatsheet' for life. he always knew the answers to any question and was one of the most brilliant persons i ever met. i counted on him to guide and educate me as he was older and i admired his wisdom from life. now those answers i could count on are no more, and i am left with the void of finding the answers for myself. not knowing whether its the right or best answer but doing the best we can. hang in there with the rest of us, who are going thru the same emotions you are. we understand how you are feeling. divvi
I could also have written that post. So many milestones we were unable to share as DH progressed down this terrible path. Kenny just passed last Monday and last night and this morning was the first time I've actually felt completely alone. He was bedridden or I lifted him into a chair for quite a while. Would I want him back like that? Not for a minute. Was I ever angry at the illness? you bet I was... But, now I treasure the touch of his hand, the look of recognition when I came in the room. He didn't lose that till the last week. Just take it one day at a time and know that if he could remember, he would. Every night we'd say Goodnight, I love you, until 10 days before he left. I will cherish those words always.
Just hang in there, hang on to this site and know we understand and feel your pain, which most of us are sharing, and never be ashamed of your feelings, we're human. God Bless
It's heart warming to read all of the posts. Thank you! Nancy, my heart breaks for you and your loss. I hear the love you shared with Kenny and that will live on forever. Much Peace.
I am glad I have do not put a lot of hope in others remembering my birthday. I use to send cards to all my siblings (there are 7 of us) but they never returned. I have on sil that use to send me cards but then she turned it over to my brother and that was the end. My hb would sometimes remember my birthday and it was usually because I would be calling my mom on her's which was the day before mine. As for our anniversary - I tried in the early years to make it a big deal, special, but got tired of fighting his apathy. So, there is no longer a let down if no one contacts me. Last year I received birthday wishes from my FB friends and those here who are also on FB because it will let friends know.
I was not expecting anything at my birthday this year which is right after Christmas...as in 4 days...but when flowers arrived from the kids, DH dug up a paper and made a card and put a check ( yes he is good with the numbers and does not control the bills or check book..he just asked to see it) and voila...I had a little gift...so I selected something and pretend he chose it all by himself..he did for Christmas cuz a friend took him out one day.
Our anniversary is in June..and our grandson is being confirmed in Iceland on the 12th our date is the 11th..on skype he was all pumped to go saying I have got to get there for this...Well I went on line and to my surprise Icelandair is now flying from LAX and SF so that would be a long flight or we could go to DC and then out of Dulles a day or so later...when I told him, he said I don't want to go it is too hard ( which it is for him with his walking so slowly etc) and he meant for me to go..but the kids have heard something different...maybe now they will start to get this travelling thing as more difficult than just using a wheel chair in the airport.
Sounds like most of us could have written it. I identify greatly. I have trouble wallowing in the mire utterly, even though I guess it's an option! I'd rather look at the overall picture and see my life as pretty good, with a major very sad aspect.
I think the AD detour in life is a time to reflect on what is truly important. We all have the option of getting Divorced and saying we could no longer take it. The lack of support from famliy would make that easy. Instead we have the opportunity to demonstrate what is important in life. I have had many a person say to me, I do not understand how you are able to do this. I tell them that I have no choice but to, the other options are not real options, you have to live with yourself at the end of the day. It is not the life I would have chosen, but it was the hand that life dealt me. We are not in control, we are along for the ride. Enjoy the little things that make life good, and try not to worry about the future. Do what you can to make things better, little good has come from dwelling on what would or should have been. We are on the rollercoaster of life, some are just on the kiddy train.
People are always saying how bad my life is but I always tell them that it is different and that everyone has problems and trials and this just happens to be ours. Appreciate their prayers but they can keep their sympathy. Happy Birthday to all who missed hearing their spouses say it and Happy ANniversary to all of you who have hung in their to be true to your vows!
Wow Susan, what an incredible outlook you have. You are truly one of our most inspirational spouses. All of you who have posted here have terrific attitudes, bless you all.
Awww, MarilyinMd, she didn't mean anything but that she thinks that the disease has made changes in my life that she considers terrible. It was just a tiny part of our conversation but it started me thinking. But thanks for your concern.
Happy Birthday, Susan! I, like you, believe I've had a very good life. There may be a few obstacles in my life now and those obstacles will grow, but I thank God for my life and all the blessings I have. I count my blessings often, maybe not every day, because some days are difficult to get through and on those days I wonder how I'll get through the difficult times ahead, but when I look back at my life, I feel very blessed indeed. Thanks for giving us something to think about.
Last year my DH forgot our anniversary all together. I wish I could say that I had a really long marriage like yours but we have only been married for 14 years and when we got married he was impotent(he neglected to tell me that little gem) and eventually would not go anywhere with me or do anything with me so I don't have any good memories except for our wedding day. I guess we weren't married long enough. Anyway, maybe this is not a good place to talk about this because I am being a party pooper but this has not been a good day. I feel very obligated to take care of him so I don't think that leaving is a option either. I promised to love, honor, and respect and as long as I don't think about what I need or want I am alright. How long can I do that without losing my mind? Sorry, that is how I feel. I am very sad and depressed tonight.
Birthday cards an anniversery cards have no meaning for me anymore that life is gone,thats why when I visit LO at ALF I always greet her with a smile an hug an kiss her an tell her I love her,she may forget five minutes later but I won't,to see her smile gets me thru til the next time we meet,she asked the last time if I would take her home just to drive by an see the house one more time,when I told her no she asked if I could come live at "her" house?These long drives get longer everytime....an sadder
Happy Birthday, Susan. Wish I had your outlook, more forward-looking than regretful. Last night I talked my daughter's ear off. (yes, she's learning to listen, now that she's begun her internship in councelling!). Her last question to me was, "Mommy, what is it that you want me to DO?" Nothing, just be willing to listen. Went to Church yesterday, in an effort to get out, meet people. Just sat there and cried. I knew that would happen, so most likely won't go back for a long long time. An old friend (gal) took me out to lunch afterward. Very, very heavy hearted, understanding more every day how bad a situation I've been left in. To know I was never thought much of from the beginning. "Someone set my life on fire". Yes, it feels just like that. One of my mother's friends suggested I sell my home and everything in it. She says she has a friend that lives in a studio apartment (reads, ONE ROOM), on Medicaid, sleeps on a cot, only owns a cell phone and an old car. She house-sits for an old couple in Maine twice a year. She was described to me as "Godly" and "Happy". I say, probably NOT. My remark was that if that's what my future looks like........... "CHECK, PLEASE!"
With SusanB's permission, I am going to use her inspiring words as part of a blog about our lives as Alzheimer Spouses. Since my life is so "BUSY", as opposed to "AWFUL", it won't be written until this evening. I hope you will stay tuned to read it.
Jen, I wish you could arrange to meet and talk with your Rector regularly. You mentioned you went to church to get out and and meet people. That will happen, but do not stop going to church because that didn't happen. Church can be uplifting, joyful, and should make you feel better. It's not (FIRST) a meet and greet place to be. It should be a safe place of refuge where you feel unconditional love and forgiveness. I like myself better when I'm anywhere on my church campus. Does that make sense. I volunteer in the office once a week, belong to other groups within the church.where I DO meet people...and we have a great time. I don't go there hoping to meet a new MAN, but I cannot forget that it was at my church that I met Foster 22 years ago. Miracles can happen. I was known to my priest and he asked me to be the Hostess at a older/Singles Thanksgiving Dinner (sit down w/silver and crystal vs a buffet with paper plates and football games) at the home of another parishioner. Guess who that was???? Become a part of that community and it will become a part of you. Yes, I cried the first few months - grew less and less.. tears came back at Christmas Candlelight a year later...because I still miss him. But it's getting better. Get to know the women in the church,... you need them. They will be there for you when you need friends the most. Remember, Everyone Has A Story!... ask about theirs.
I don't remember when I last got a birthday, anniversary, Christmas or Valentines card but it doesn't bother me. Sometimes I think I am just numb to so many things and wonder if I will get the feelings back. Or maybe it's better if I don't!
I think, now that the smoke has cleared, that back then...before he got sick, he would ask ME what I wanted to do on my birthday, anniversary and Valentine's Day. I'd pick out a place to go, or a restaurant, and we'd go and have a great time. I didn't think about the fact that even then, I WOULD CHOOSE. Only when he COULDN'T chose, did I think "this is so unfair, he didn't make a plan for MY DAY!" So I do understand. We asked for so little, and we missed the days when he had at least remembered the day and ASKED me what I wanted to do.
I remember the year when he could no longer shop or even care! about holidays... (several years before he died) that I showed him a lovely robe I had bought myself for Christmas. It was from Neiman Marcus, and frankly cost much too much! I said, "Look what you bought me for Christmas!!!" and he replied, "Wow! I really went overboard on that one, didn't I!" and we both laughed.
You do what you have to do. The robe was wrapped in Christmas wrap and placed beneath the tree, so everyone could ooh and ahhhh over it when I unwrapped it on Christmas morning. He was so happy that he had a gift for me beneath the tree and loved all the compliments he got for choosing such a wonderful gift. Nancy B*
I did much the same thing this year. DH is in an ALF and I bought him a few small gifts. His life has dwindled to so little...he's content with a few clothes, a candy bar, a bed... Anyway, I bought myself a scarf, wrapped it and took it with me. I handed it to him and told him to hand it back to me, that it was a gift he'd bought for me. He knew he'd done no such thing, but laughed and handed it back to me. It was a tiny piece of Christmas joy for both of us.
jean21, if you are anything like me you may want to hold off on trying to get those feelings back because (for me anyway) it is just torture when I try to have a normal life when I should know better, right now it is not possible and it just makes me feel worse when I try to MAKE it possible. I too, hope that eventually I can feel free to have those feelings again. I actually wish I was a little more numb, it would help me to deal better.
Years ago my daughter mailed a wrapped gift to my husband's facility so he could give it to me for my birthday. Great thinking on her part. She now works for the country's largest ALF company and is working exclusively on therapeutic activities for dementia patients.
NancyB* I have done the same gift trick at Christmas and my birthday just in case...so far tho he has managed thanks to all the Zales ads during Christmas to go shop for a little treat for me. That said, I would not want him to be embarrassed at having not gone on his shopping trip. I usually get my skin cream that I am out of or a fragrance that is about gone..
Blue, my youngest girl was here with us just before Thanksgiving and she and I went to my favorite jewelry store to get some costume holiday bracelets for the granddaughters and I needed her help for the colors. While we were there, we saw some Citizen Watches that you don't have to buy batteries for for at least 10 years..and one had a mother of pearl face..and was in two tone silver and gold..nice..I just made an off handed remark that I thought it was pretty. Well said daughter said she needed to go to SLO for some music and too the truck but would be right back..well she was gone longer and I needed to pick something up at that jewelry shop for her for her Christmas..as it turns out, she was back at the store too hiding in the truck ( there is another one just like ours so I thought nothing of it when I left). I had gone to get her gift, a little diamond pendant , heart shaped for her dad to give to her and she went in and to my surprise on Christmas morning she had gone back to get the watch to put out for me from him! Do great minds think alike ot what??!! grin
As I mentioned earlier, because my life is so crazy busy, I did not get a chance to post my blog on this subject until this evening. I invite you to log onto the home page - www.thealzheimerspouse.com- and read it. I am not being "pollyannaish" - My blogs attest to the fact that I can be just as miserable as the next person on this Alzheimer journey, but I do NOT believe that our lives are "awful" if taken in the whole context.
Please post comments here on the "awfulness" or NOT of your life.
My life was NOT awful. Today would have been our 24th wedding anniversary. I sit here tonight remembering all the happy times we had. I had 20 years of the most wonderful life a woman could imagine. The last 4, not so great but not awful. They were sad,stressful, tiring, but not awful. I would not give up my 20 years with him for anything. I wouldn't even give up the last 4.
I agree, my life is not awful, Alzheimer's is awful. I have been married for 35 years, 3 that have been very dificult. I still cherish my wife and would do anything that I can for her. She is so far gone she dosen't know exactly who I am, but she knows who cares for her. As hard as it is I am selfish about placing her in LTC because I don't know what to do without her. We also have years of memories full of better times and 2 grown men that also care for there mom now.
My life with my DH has not been terrible either. Because of him, I did a lot of things and went places I might never have gone or done. He has and still has a dyn o mite sense of humor..we laugh a lot..why just today he said " Remember when I told you that the best tunes were played on older fiddles?" I said "yes" and then he said " well I fooled you!" and we both laughed. Or he might say over his cup of coffee " is there anything else you want to yell at me about?" and I'll say " give me a few minutes to think of something" and then we both laugh.. He is so far pretty easy and pleasant. My stresses do not come from him but from the changes that put more on my shoulders...things like what to fix that he would like to eat..eating is a problem..or maybe having to run all the errands and etc..but get mad at him? NO never...just frustrated at the disease process. I'd choose him all over again even if a crystal ball would tell me we would face this..( but maybe I'd be smarter).
Well said,Phranque.I don't care if my husband forgets my birthday or our anniversary,they are just another day.What I care about is that he gets up smiling and gives me a big hug.He just seems happy to see me.That's enough for me.I know he won't always be this happy but I'll take what I can get
When I went to the ALF yesterday he didn't know I'd just had a birthday the day before, but at one point he looked at me and smiled and said, "You'll always be my sweetie."
Q. Is my life awful? A. No. My life is not awful, just diffent, our life is just not what we had planned. But we are still living it together.
Kathryn was always big on birthdays and loved going out to dinner for them. They have always made her so happy. When my birthday is about a week away I remind her it is coming and we go out for dinner a couple of times for the next week and shopping for my gift together. At some point I help her pick it (I don't pick it) and get it wrapped. On my birthday I place it on my chair in the living room with a card that says to Jimmie, Love Kathryn (which I wrote on it) and go back to bed. When we wake up and have breakfast I wait until she is in the living room and then I ask her is that the birthday gift you got me yesterday? She will say yes and I ask her if she wants me to open it now or wait until my birthday dinner. She says wait until you dinner tonight. I bring the gift and some friend’s go out with us and I bring the gift. At the right time I will ask Kathryn about my gift and she will say ok, if you are a good boy. I open the gift and tell her how much it means to me and she just beams and gets a big smile and is so happy. It’s a great day.
The truth is my gift was not in the box. It was sitting in the chair next to me. Seeing her excited and happy is my gift.
I can claim 2 kinds of "Awfulness" in my life. The BAD "Awfulness" of my disability; of DH's Mental Breakdown and VaD; our Daughter's broken back; and several other big "Awful" things. But there are also many GOOD "Awful" things which have happened--getting married; rustic camping; the birth of our daughter; etc. AWE FILLED events. At least for me the last list is the one that I focus on. The BAD list are things we are faced with and must deal with but they do not have to be allowed to destroy us. There are so many GOOD Awe filled things happening in our lives that we can enjoy and focus on that our lives can be considered blessed. The Boards here are GOOD AWE FILLED sources for all of us. Our day to day lives can be stress filled and sometimes awful, but our lives--at least mine--is muich more Awe Filled.