and alone. Not sure where I belong anymore. DH firmly planted in stage 5 w/both feet. Lost a child, added a new granddaughter. So many new folks here, glad for that. Been away for a while because I haven't felt comfortable, not sure it's time for me to come back. Just wanted to say I miss you all. Much love...
Diane, I know how you feel, I lost my dH in Feb . of this year and still have not found a place for me with my family and friends. However, you can feel comf ortable here as we understand how Alzheimer's destroys your old life and you have to rebuild a new one. I try to live one day at a time with little expectation for the future, I am just allowing it to unfold as it will. LIfe is precious, so try to enjoy each precious moment.
Diane V, I'm glad to see you post again. I think it's so important to be able spend a little time with others who truly understand. Please do stay with us, at least to lurk if not to post. Getting and giving support is therapeutic. Have a welcome back ((((hug)))).
Diane V, I think in some way we all feel disconnected. I don't have the daily pressure of caring for Jim now, but I am still a full time caregiver to my Mom and Grandsons. I miss Jim so much that at times I can't stand the pain. Then I see him and cry all the way home. What a way to live. We are not widows/widowers, we are not husbands/wives in the true sence of the word. We are Caregivers and that is HARD! At least once a day I wish that this wonderful family that we have been blessed with thanks to Joan, could live in our virtual community. How wonderful it would be to have you next door. What a gift that would be. I really think that Disconnected = Caregiver. Feel my arms around you, my friend. Stay close, we need you too.
Good to see you post, Di. It's true..we are disconnected, which is why we have to all stick together in spirit so we know we are not alone. We also have to make sure we get connected even in the smallest way, with the 'real' world of people that have no idea of what we are going through. But until this nightmare ends, we have each other to come home to.
I used to wonder when other people said they were lonely. I never was. But, in the last few months I do feel lonely, even though I have a wonderful family and friends. As I wrote in my journal, "Everyone says they want to help, then why do I feel so alone?"
I feel lonely to even though my husband gets along pretty well. But, there is no conversation. He says okay to pretty much everything. When I do talk to people, I know I tend to talk, talk, talk. I used to be the quiet one. Now if there is someone around to hold an intelligent conversation with, it's hard to shut me up.
I, too, am feeling lonely. I noticed it in the past few months, in fact, since dh went on Seroquel. He's withdrawn more into himself now, since the med. But if that's what it takes to keep the raging at bay, so be it, and I accept it. I talk to a lot of neighborhood people when I go out walking my dog. That helps.
I sometimes wish I had a dog. The last dog I had seemed to know when I was feeling troubled or sad and would give me comfort. But, after she died I vowed not to get another. Maybe I was wrong..... I do feel disconnected from people though. When my husband was first diagnosed with this awful thing I didn't feel as bad about it as I do now. I wasn't lonely then. I had everyone (in my family) offering to do their share. But, in truth, they all have so much on their plates, with small children, work, etc., that all of that has fallen by the wayside. Oh, they do help. For instance, I did ask one of my daughters to sit with DH tomorrow so I can get my hair done, and on Sunday night another one will stay with him while I go to a function for a special friend. But, having to count on someone everytime you have to go somewhere is so confining that even when friends ask me to go somewhere with them, I can't, because I cannot leave him alone. I have finally agreed to get someone in to help with that.
Feeling disconnected. Lonely. all of the above. What really sucks is having to 'put on' the happy face a pretend all is right with the world for my children. My oldest (11) knows what is going on with dad, but the two youngest (3 and 5) have no idea. It wears me down. A lot. My oldest is pretty keyed in and these past few days have been hell, and she has been so sweet, hugging me, and asking if I need extra help doing things (and then doing them!).
I miss being able to discuss things with DH. I miss adult conversation. I miss my best friend. I miss my lover. I miss my marriage.
We mourn, and yet there is still a physical person hanging around.
dsm, I cannot imagine having small children and a husband with a disease such as this. We older people have it hard, but after reading your comments I'm thankful we had a long life together before dementia hit. It will make me think twice when I feel overwhelmed or sad. You said it perfectly when you said "We mourn, yet there is still a physical person around." What do you tell your little girl? I have a 10-year-old granddaughter who is confused with what is happening to Papa. The lovely little book by Maria Shriver explaining AD helped her understand it somewhat. But, she doesn't have to see it every day like your daughter does. I am so struck by what you are going through and what you will be facing. Jean said it all about your little girl. To have such insight in what her mom is going through is wonderful. God bless.
babozek - it has been almost 3 years since we lost our 'puppy' of 16 years. I think I am really ready for another one. The last couple months I have had at least 3 dreams with our puppies in it. Last night was the two we had our first 14 years of marriage. It was 5 years before we got the next dog. Why I am dreaming about them I don't know. I just know they are happy dreams of playing and having fun.
Jean21. My daugher is a wonderful young lady, and not a day goes by that I'm not incredibly proud of her. I am so blessed to have my children. They are my life, and some days, they are what keeps me going. . .
Babozek. I remember when I first told my daughter. I made up every excuse in the world not to, and put it off for months for one reason or another, but eventually built up the courage and with prayer, we had a very nice (for lack of a better term . . .) discussion. In the end, I think she was relieved, because there was finally a reason for why daddy was acting the way he was acting. And, I reassured her that if I had to do it all over again, even knowing what I know now, that I would in a heartbeat. Because #1) I love her daddy, and #2) loving her daddy is what gave her to me, and I am so blessed to have three beautiful children.
Thank you all for your thoughts and prayers. they are much needed. The toughest part for me now is dealing with the (harsh) personality changes. To go from having a best friend who is loving, caring, and wouldn't say a mean thing about a mosquito, to having someone who is now short, curt, and angry a lot of the time, and directs that toward us, well, it's just taking some getting used to. My head tells me day in and day out that it is this blasted disease, but my heart often overrides my head and I succumb to the pity-party blues.
I miss my best friend, my lover, my husband. I miss pillow talk. I miss conversation all together.
And, bluedaze--if I actually typed out what I was thinking, then joan would most certainly have to edit something. . . .
so, I just stick with the rated G version of this disease bites.
Dsm, I like "pity-party blues"; you have a way with words. I am sure you must treasure your wonderful daughter. A great blessing, but at the same time what a burden for her to bear. I hope it will make her a strong and resourceful person. My oldest grandson, who just turned 10, understands pretty well but of course can't cope when Opa gets annoyed at the least provocation and yells at him. We haven't seen these kids since May but are going to be staying with them at Christmas time. (I hope it will go better now that he is on Risperdal.) When they were here, their mother talked to them all about what was happening to Opa; they needed an explanation. Then after another incident of Opa getting mad at them, I told them a bedtime story about three kids who lived in Pennsylvania, went to see their grandparents in Holland, etc., etc. and everything that happened. They were fascinated and wanted this story again every night while they were here. Each day, everything that happened got translated into the story.
When we told our 15, then 14-year-old grandson (who is the love of his Papa's life!,) he felt better knowing the truth, because it bothered him to hear Papa constantly asking "which side of the placemat does the knife go on). Just an example, but questions such as this were annoying him (you know how teenagers are!) and he couldnt understand why he had to constantly answer the same questions from Papa. But, the kids do act differently toward grandpa now, they don't know what to expect from him. He acts silly and childish sometimes and you can see the confusion in their eyes. It hurts so bad for me to see this because their Papa was the kind of guy who would go to the ends of the earth for them. He would do anything and go anywhere they wanted. Now, everything is so different and I ache for the way it was and can never be again. I miss those times more than any other time in our lives. The 12 years we had before all of this I can honestly say were the best years of our lives. Being grandparents is absolutely wonderful and I want so bad for him to be able to experience what it once was like. I can go on and on about this, because I want it too. But, I can absolutely count my blessings. And, that's what I choose to do, because we have so many. I will not focus on the bad that's happening now. And you people are so courageous in what all of you are doing, and the humor some of you express in the face of such tragedy is remarkable.
And Charlotte, I still hear my 14-year-old "puppy" pushing my bedroom door open so she can come and sleep with me! She's been gone for about four years but I still see her nose poking into my room from outside the door. A dog would be such a comfort to us, but I just don't know if I can take on another chore right now. I miss that dog though...
We have had company with us this week. My sister and her husband are visiting. DH is usually so quiet and sleeps most of the time. This week there has been no sleeping and he talks all the time. Most of the time he repeats the same things he has already said, but they are patient. It is strange to see the change in him. I am wondering how he will act when they leave.
dsm, i looked at your profile and see that you are relatively new and just joined recently. gosh, having 3 VERY small children at home is so overwhelming on its own much less to add an AD spouse to it all. i am also very proud your little 11yr old steps up and seems to be so mature for her age and understands how you feel. there have been others here EOAD and with small kids at home. i dont know how you are as far as future plans but i hope you are preparing with an elderlaw atty for a time in the future if you need an earlier placement for DH. if they become verbally and physically abusive to you or the kids it may come earlier than planned for the sake of the children. its never easy to plan for futures with AD but as a mother i know the difficult decisions that will have to be made with young kids at home and a spouse moving into latter stages AD. my respects for coping so well with all on your plate. hugs to your little ones, divvi
maryd, i also had an unexpected visit from long lost DH daughter yesterday, and was astounded at the overall gain DH showed during the visit. how strange they can make a comeback even for such short times! divvi