I am trying so hard to to make each day count,to stay in the moment and to enjoy this holiday with my DH. Got up today planning a happy day for us. We loved having beautiful and meaningful decorations in our home. So today we would finish decorating and then enjoy shopping together. After all ,that's what we always did. At breakfast, my DH Looked at me and said "Am I going to get worse?"My stomach sinks as my heart breaks again as I tell him a "fiblet"(a term I first saw on here)? "No on really knows . No one knows the future but we have each other so let's just enjoy our life everyday" I say and he is satisfied. But my happy mood is fading. We start decorating the tree but it is different this year. He doesn't remember to put the breakables on top and the ones the grand kids can touch on the bottom. My suggestions annoy him. I already gave up on the lighting outside our house. He used to spend two days putting up the lights with pride but he didn't care when I said we wouldn't do all that work this year. Long before we finish, he is becoming impatient and frustrated. The many boxes of our Christmas memories are too overwhelming this year.
I now sit sad, drained, scared, disappointed and wonder how I will be able to stay positive in the midst of these daily reminders of what is happening to my DH . I stare at the unfinished decorating and feel unable to do another thing! HELP! How do we survive this constant pain.?
I don't honestly know how we survive. We do though. I'm sorry that the things that are happening are sad and I know how that feels. I wish I still had the ability to communicate with my wife at all and looking back wish I had been able to treasure those moments more then even though they are very hard on us.
I'm sending you some strength Lorrie. I hope it reaches you.
Can you watch some christmas movies together? Or play some christmas music where the two of you can move along in the moments together and he doesn't have to get things right?
Lorrie, you are a wonderful caregiver and you should celebrate that as we all should. Yup, our traditions are changing and it will be painful for those of us who still cherish them. The transition to a simplier tradition is hard and may take a few years to become accustomed to. Like you, DH and I collected very cherished, meaningful christmas ornaments and delighted each year in placing them on the tree and recalling the precious memories of where wE PURCHASED THEM AND THE MEANING THEY HELD FOR US. I held on as long as I could but when I realized dh could no longer understand the meaning of each decoration we so loving chose and purchased and that we wanted to preserve them for our family members to remember us by, I elected to simplify our ChristmaS. We now have an artifical tree (never in my life would I have one...we always enjoyed picking out "the best tree ever" and cutting it down), put on non-breakable ornaments within our collection and although the tree does not quite look the same as in years past, it is beautiful in its simplicity. Less stressful for all of us and still a joy to behold. One year we were only able to just put on lights. If you really look, the beauty is still there and whatever decorating you are able to accomplish celebrates the season, even if it does not match previous years. I have come to cherish what we can do together for the holidays instead of mourning what we've lost. Yes, it took time, but I also know you too are capable of adjusting your expectations and embracing a new tradition. It is heartbreaking but I am grateful to still have dh with me. I can't even imagine what the holidays would be without him, no matter how sick he is. Embrace what is and know you and your husband will be in our hearts this year-it is so very hard to give up one more thing.
Thank you so much Wolf and LFL for responding to me. It helps so much to hear from others who really understand.
I,too am dealing with a spouse who is young at 65. He is diagnosed with moderate AD so I wonder how many more holidays I will share with him.
Wolf, I like your suggestion to do something that doesn't have to be right. I never really took time to just sit and watch Christmas movies before . That might be just the thing we could do now!I do want to appreciate this time .
LFL, I will try to adjust my expectations. I realize that is what is so very hard right now. I am still fighting to have what was. I set myself up for disappointment and more pain.
Unfortunately most of us have experienced the same thing or something similar of what what you are now going through and most of us came to realize that not expecting much leaves less disappointment. Being disappointed because of their lack of ability and/or interest in things of an earlier time are more hurtfull to you then to your spouse, because probably within the hour they have forgotten what happened.
My heart aches for all of you that are just beginning the journey. If I had one speck of advise to give you it would be not to expect much of things past because the heart ache of their failure to understand and/or cooperate will only cause you grief. Some of the most simple things like asking your spouse to go to the garage and bring something inside will be something they won't understand. Because by the time they get to the garage they have forgotten what you asked them to bring into the house. Or, this condition will affect their vision and they won't recognize the object you asked for even if it is right in front of them on their work bench.
For most of us Christmas is the time of sharing and remembering Christmas time of earlier years and the result can be such deep hurt and disappointment. Know that you will be strong enough, you will learn how to cope,you will learn to do many things yourself that your spouse use to do, you will learn...I know you will and you will survive. Someone said..."What doesn't kill you makes you stronger"....you will be amazed at how strong you are...and we all are here to help you through this journey. Hugs...Hugss.
Take care Lorrie, and I hope watching the movies helps. It is true what JudithKB* says, though for me it is really trying now., the first year was in some ways the hardest. I just could NOT accept it. Then, just when I have, the downhill slide is moving fast. This could be his last Christmas, and for sure at home as he is going in to placement soon.
Hugs, good wishes, prayers for some joy for you and yours.
I work to not dwell on what will never be. True, our dream was to travel in our RV working as we go. We still live in our RV but only I work. It bothers him that he can't work and sometimes I am able to make his day by asking for him help - like last week I had to collate papers to send to customers. Since he spent his lifetime as a printer, it is second nature (still) to him. He collated, folded and stuffed the envelopes and was happy as he did it. There is a one workamper that will get him to help haul the 20gal propane tanks back to be filled.
My hb just turned 65 diagnosed at 59, I just turned 60. You commented that you don't know how many more Christmas's you may have. That we don't know. Some go fast like Coco's husband, others go slowly. Wish we did know cause that would make it much easier.
Even though we have to plan for their future and ours, I think we all get through by just living in the moment like they do. Even though I know this might be the last job, having to hang up the MH keys by next fall, I plan where to settle but it is like in the abstract cause I live in the moment. Make sense?
About the only thing I can add is that, once diagnosed with Alzheimer's, if you have expectations you will have disappointments. But if you can let go of your expectations, you will have more enjoyment out of things as they do happen.
Thank you all for our comments. I totally relate to everyone's stories and suggestions. I took DH out shopping. Just got in and couldn't wait to see if I had more comments. You are all a lifeline right now.
I take strength from Judith's words. It's been 5 months now since my Dh went into placement. I am doing things around the house I never dreamed I could do myself. It's true you will learn to cope and survive...I am only just now accepting and coming to term with our Alz journey, and trying as best I can to look after myself and keeping in touch with friends. Ive put a tree up and a few santas around the house.....
My DD said to me something that made me think...."Mum you can choose to be miserable, or you can choose to make an effort to have some joy in your life, it is what it is." I'm hosting a sit and sew day for my patchwork friends next week...gives me something to plan and get ready for. Perhaps, with time, there will be life after Alz.
Julia, I am proud of you. Your daughter gave you good advise. Nobody can say it is easy to get on with your life but staying busy has helped me and knowing at 84 I didn't have a lot of years left I decided I would try to find some joy in life. Boy, that was a long sentence.
Lorrie ... to this and your other post on moderate stage, I can't add much to what others have already written so well. So I'll only add that by coming to this site, I have learned more than most doctors can begin to know, and I find that by just reading posts and comments by others, that alone somehow helps me get through my worst days. I visit this site daily, mostly just to read comments and posts of others. You have come to a wonderful place with people who are or have been living with what you are living with, who were or are coping with what you are coping with, and we all draw strength from each other. You should not second guess yourself about major decisions because there is no magical right answer. Each of us must do what we can do as loving caregivers, and there is no one "right time" for calling in companions or home health aides or making ALF or NH placements. As you work through what it happening, you will need to make these decisions when you feel it is right to do so and you should not let yourself be guilted into doing otherwise. So draw strength from others who are or have walking down a similar if not identical road, join a good weekly support group just for spouses if you can find one, and just hang in there as best you can.
Oh Lorrie, I feel so sad for you and me and all of us, especially around this time of year. One of the hardest things for me was realizing that I was now entirely responsible for any happiness I might have. What that means is that if I love Christmas lights, then I put them up. For me. If I love baking holiday cookies, then I do it. For me. If Jim wants to help, sure! But if it causes any stress for him or deeper heartbreak for me, then I don't do it. It's a terrible rift that I have learned to straddle -- keeping Jim close enough in my heart that I can lovingly care for him, but letting go of hopes and expectations enough so I can have some life and happiness of my own in the midst of this tragedy.
One last thing. It helps to have help. I've hired a 14-year old boy who comes and helps me with everything from cleaning the basement to decorating for the holidays, to walking the dog, to taking out the garbage cans--all the honeydo stuff. I pay him well (for his age!) and it's worth every penny. I never realized how much help I needed until I had some and it helps lower the resentment factor quite a bit.
It's been one year and seven months since Jim's dx. He is 57 and I am 56. Peace and love to you on your journey.
These have been excellent posts - I'm nodding in agreement & choking up a little. It's becoming a very difficult time of year for me - I used to love the Christmas season, the decorating, the baking. Unfortunately, I've kind of developed a "what for" attitude, and that's probably not very healthy for me. I went to a table top tree (NEVER thought I'd do that!). I took time & care with it and it really does look pretty, if I do say so myself! Much easier for me to handle by myself. Simpler mantle decorations, simple outdoor dec, but I've decided that it's just fine. I guess I vacillate between "what for" and "do something"!
I have a four foot tree that I put on top of a table. Like you, Mim, it's easy for me to handle. It's also pre-lit (colored lights) I have all my favorite ornaments on it. Most are from trips we've gone on.
Yes, Carolyn, I think "easy does it" is going to be the best way to handle things. Simplify! Still kind of sad, but this is the way life is now (well, don't I just sound positive & strong! NOT!). Paraphrasing a quote from somewhere - "God gives us memories, so that we might have roses in December".